One issue, four covers This issue of Positively Aware features four different covers, each one a snapshot taken on A Day with HIV
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Amy Levy and family: “we are an adoptive family and some of our family members are hiV-positive. we choose to live an openly disclosed life, living without shame or fear. we hope to educate others with love and kindness, and hope to receive love, kindness, and acceptance in return.”
10:45 AM: huntington BeACh, CA
Alexander Smith: “Morning yoga on a stand up paddle board. i find balance, strength, and flexibility in the bridge pose. And practice the same principles in life, as i pose with hiV/AiDS.”
on septeMBer 21st, 2013, people in nine countries on four continents took their best shot against hiV. they were different people from different places, united by the fact that they took their photo on a day called
A DAy with hiV
A DAy with hiV
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11:35 AM: outside ChArlottesville, vA
1:15 pM: vAlley streAM, ny
Raymond with daughter Aliyah: “Picking apples has been a family tradition. Picking them together on A Day with hiV is our new tradition.”
A DAy with hiV
Nancy Duncan, hiV-positive since 1985: “i spend my days educating, advocating and mentoring for the cause. i’ll continue this mission until i go to be with God—or better yet, until there is a cure! i am grateful for my family, friends, my son, and my amazing, supportive partner.”
MONDO AND DuANE CRAMER fight stigMA VisuAL AiDs’ gALLERy Of ARtists PLUS
iCAAC uPDAtE
A DAy with hiV
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11:35 AM: outside Charlottesville, VA
Raymond with daughter Aliyah: “Picking apples has been a family tradition. Picking them together on A Day with HIV is our new tradition.”
A Day with HIV
MONDO and DuaNE CRamer fight stigma ViSUAL AIDS’ Gallery of Artists PLUS
ICAAC UpDate
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MONDO and DuaNE CRamer fight stigma ViSUAL AIDS— Gallery of Artists PLUS
ICAAC UpDate
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Alexander Smith: “Morning yoga on a stand up paddle board. I find balance, strength, and flexibility in the bridge pose. And practice the same principles in life, as I pose with HIV/AIDS.”
A Day with HIV
MONDO and DuaNE CRamer fight stigma ViSUAL AIDS’—Gallery of Artists PLUs:
ICAAC UpDate
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11:00 AM: Atlanta
Amy Levy and family: “We are an adoptive family and some of our family members are HIV-positive. We choose to live an openly disclosed life, living without shame or fear. We hope to educate others with love and kindness, and hope to receive love, kindness, and acceptance in return.”
On September 21st, 2013, people in nine countries on four continents took their best shot against HIV. They were different people from different places, united by the fact that they took their photo on a day called
A Day with HIV
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Mondo and DuaNE CRamer Fight stigma ViSUAL AIDS— Gallery of Artists PLUS
ICAAC UpDate
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Nancy Duncan, HIV-positive since 1985: “I spend my days educating, advocating and mentoring for the cause. I’ll continue this mission until I go to be with God—or better yet, until there is a cure! I am grateful for my family, friends, my son, and my amazing, supportive partner.”
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IN B OX
Readers poll In the SEP+OCT issue, we asked
Talk about PrEP
Tell my family.
I read the Summer PrEP issue of Positively Aware cover to cover! We get PA at my work and I like to keep myself up to date on what’s going on. It is a great magazine! This issue actually came out while I was in the decision-making process of whether or not I wanted to start PrEP. It really helped me make an educated decision to start and I am sure I am not the only one! Thank you for the work you do!
The cost of PrEP The “How would I afford it?” question is the one that stumps most of the folks I talk to in my community about PrEP (Summer Special Issue). I still don’t have a good answer for them. Even with Gilead’s Patient Assistance Program, you have to have a prescribing provider willing to both prescribe the medication and complete the pharmaceutical company paperwork. (That’s assuming that these HIV-negative black men have a regular health care provider!) Knowing is half the battle. Folks are starting to understand that PrEP works when it’s used. The next big step is figuring out how folks can/will use it.
Get counseling.
Most important: 39% very important: 9% important: 18% somewhat important: 3% Neutral: 12% Less important: 3% not very important: 12% Least important: 3%
Most important: 31% very important: 25% important: 0% somewhat important: 13% Neutral: 13% Less important: 6% not very important: 0% Least important: 13%
Find a doctor.
— Michael Rubio San Francisco
Rank the following things to do after you test positive:
Some thoughts on living with HIV—Lessons learned by someone living with the virus (Sept.+Oct., p.27): Well expressed, Dan—great tips! Continued good health to you.
Most important: 70% very important: 21% important: 9% somewhat important: 0% Neutral: 0% Less important: 0% not very important: 0% Least important: 0%
Change diet and/or exercise.
Most important: 10% very important: 7% important: 7% somewhat important: 20% Neutral: 20% Less important: 10% not very important: 7% Least important: 20%
—Rob T.
Dan, thanks for your candid insights. So well-written and inspiring! —Jane B.
No small acts Fantastic article (“Microaggression,” Sept.+Oct., p. 32)! The pervasiveness of this issue undoubtedly warrants these kind of explorations. Great work! — Mark Chodron
—Rob Newells
All communications (letters, email, etc.) are treated as letters to the editor unless otherwise instructed. We reserve the right to edit for length, style, or clarity. Let us if know you prefer we not use your name and city. You can also write: Positively Aware 5050 N. Broadway St., Suite 300, Chicago, IL 60640-3016.
Quit smoking.
Get a case manager.
Most important: 15% very important: 6% important: 15% somewhat important: 6% Neutral: 15% Less important: 9% not very important: 18% Least important: 15%
Most important: 16% very important: 16% important: 19% somewhat important: 22% Neutral: 6% Less important: 0% not very important: 16% Least important: 6%
Get on treatment.
Most important: 29% very important: 19% important: 6% somewhat important: 29% Neutral: 3% Less important: 10% not very important: 0% Least important: 3%
Join a support group.
Most important: 16% very important: 3% important: 17% somewhat important: 20% Neutral: 10% Less important: 5% not very important: 16% Least important: 12%
this issue’s poll question
How important are the arts to your quality of life? cast your vote at positivelyaware.com
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POSITIVELY AWARE JOURNALISM. INTEGRITY. HOPE.
Jeff Berry editor- in - Chief
Enid Vázquez a s s o c i at e e d i t o r
Sue Saltmarsh copy Editor
Jason Lancaster proofreader
Joshua Thorne Web Master
Rick Guasco C r e at i v e d i r e c t o r contributing writers
Liz Highleyman Sal Iacopelli Laura Jones Jim Pickett Matt Sharp photogr aphers
SEIZE THE DAY. Select pictures from A Day with HIV are featured in a new book pubished by Positively Aware. Share some of the most compelling images and personal stories from our 2013 anti-stigma project. Limited supply. Order your book for a $20 donation, plus $2 for shipping.
Available at adaywithhiv.com/book
Chris Knight Joshua Thorne M e d i ca l a d v i s o r s
Daniel S. Berger, MD Gary Bucher, MD Michael Cristofano, PA Joel Gallant, MD Swarup Mehta, PharmD
A moving experience After 10 years in Chicago’s Edgewater neighborhood, The offices of Positively Aware (Along with the rest of TPAN), moveD a mile down the street to its new location. The move came during the magazine’s production deadline. From left: Associate Editor Enid Vázquez, copy editor Sue Saltmarsh, and Editor-inchief Jeff Berry sort out their “issues.”
adve rtising inq u irie s
Lorraine Hayes l.hayes@tpan.com Subscription services
Shelby Pollard distribution@tpan.com
5050 N. Broadway St. SUITE 300 Chicago, IL 60640-3016 phone: (773) 989–9400 fax : (773) 989–9494 email : inbox@tpan.com www.positivelyaware.com
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We accept contribution of articles covering medical or personal aspects of HIV/AIDS. We reserve the right to edit or decline submitted articles. When published, the articles become the property of TPAN and its assigns. You may use your actual name or a pseudonym for publication, but please include your name and phone number. Although Positively Aware takes great care to ensure the accuracy of all the information that it presents, Positively Aware staff and volunteers, TPAN, or the institutions and personnel who provide us with information cannot be held responsible for any damages, direct or consequential, that arise from use of this material or due to errors contained herein. Opinions expressed in Positively Aware are not necessarily those of staff or TPAN, its supporters and sponsors, or distributing agencies. Information, resources, and advertising in Positively Aware do not constitute endorsement or recommendation of any medical treatment or product. TPAN recommends that all medical treatments or products be discussed thoroughly and frankly with a licensed and fully HIV-informed medical practitioner, preferably a personal physician. A model, photographer, or author’s HIV status should not be assumed based on their appearance in Positively Aware, association with TPAN, or contributions to this journal.
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photo: rick guasco
POSITIVELY AWARE IS PUBLISHED BY
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one of keith haring’s iconic paintings from 1989 during the height of the aids epidemic. view other artists’ work beginning on page 24.
Departments
F e at u r e s
Online
5 In Box and
17 Renaissance man
Sculpted in song
Readers Poll
Carlton Wilborn is embracing his evolution.
by Sue Saltmarsh
Ricky Ian Gordon’s operatic memoir.
8 Editor’s Note
Every picture tells a story.
Photo © Keith haring foundation
9 BRIEFLY
by Sue Saltmarsh
24 Art and AIDS
Visual AIDS preserves the works for HIV-positive artists.
by Jeff Berry
Hep C treatment. Condoms in prisons. Documentary on positive women.
24 Gallery of AIDS-influenced art
11 CONFERENCE
UPDATE Drug progress at ICAAC.
52 Ask the HIV specialist
53 Salient
positivelyaware.com/ 2013/13_07/memoir.shtml
ICACC update More drug news.
The artists of Visual AIDS.
by Enid Vázquez
positivelyaware.2013/13_07/ icaac.shtml
compiled by Sue Saltmarsh
37 A Day with HIV On Saturday, Sept. 21st, 2013, people around the world, took their best shot against HIV stigma. Here are some of their stories.
44 Mondo and Duane Two artists, one mission.
by Jeff Berry
Ramblings
50 Read these A reading list of noted AIDS literature.
by Sal Iacopelli
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E d ito r ’ s n ot e
Jeff Berry
every Picture Tells a story
I
have found that the times in my life when I am most happy are when I’m being creative. I’ve never thought of myself as much of an artist in the true sense of the word, I can’t draw a picture to save my life, although I’m pretty good at hangman.
We all have gifts, it’s realizing what those gifts are, and how to best use them, that’s sometimes the tricky part.
Take care of yourself, and each other.
Photo: Chris Knight
Follow Jeff: @PAEDITOR
My creative juices were really pumping and at their peak when I was mixing music in the clubs for 15 years, beginning in the late ’70s. To lift up people on a crowded dance floor and take them on a journey, telling a story through music, piecing it together, making it seamless and fluid, building up to a crescendo, and then bringing the crowd back down again, only to take them up once more—it was an art. You can teach someone the specific techniques of deejaying, but the art and the creativity of putting it all together is something that is innate, and can’t be taught—it’s a gift. Another creative outlet for me has been writing. I did it for a while in high school and college, but then let it go for some time and didn’t really pick it back up again until years later after I had tested positive for HIV. Positively Aware and TPAN have given me the unique opportunity and platform to share my story, and my perspective, on this journey through life with HIV, as well as the stories of many others who are taking this journey alongside me. The creative process for me when I write is to step aside and get out of the way, and let the words flow through me—that’s when it feels the best, and when my writing seems to resonate and strike a chord with others. As in music, when I try to force my writing, it becomes stilted and stiff, and has a hollow ring to it, for both me and the reader (or listener). I guess the point I’m trying to make is that we all have gifts, it’s realizing what those gifts are, and how to best use them, that’s sometimes the tricky part.
This issue of Positively Aware takes a look at some of the artists and organizations that use art to raise awareness about HIV and AIDS. You’ll read about Visual AIDS, an organization that works to preserve the legacy and art of HIV-positive artists. The gifted and multi-talented Carlton Wilborn talks about what he’s learned from his experiences in the past to now help others as a life coach. You’ll learn about what fashion designer Mondo Guerra and photographer Duane Cramer are doing to empower others to advocate for their own health care. This issue also includes a look at our fourth annual A Day with HIV anti-stigma campaign, where we ask people, both positive and negative, to take a photo to show what it means to live in a world with HIV. On these pages you’ll see just a few of the powerful images and stories that were submitted—you can view all of the photos online at adaywithhiv.com. It’s important for each of us to find our own way to be creative and share our story. Whether it’s through music, dance, painting, photography, writing—or even just the way you sew a button on a shirt, find a way to express and expose your inner self to the world. It can be scary, just like disclosing your HIV status can instill fear. But it can also be incredibly freeing and empowering, and used as a tool to help show and inform others about the things in life that are most important—truth, integrity, and responsibility.
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Briefly Enid Vázquez @ENIDVAZQUEZPA
CMV helps HIV vaccine
The use of cytomegalovirus (CMV) as a vaccine vector (carrier that takes the vaccine through the body) was found to help rhesus macaques clear SIV (simian immunodeficiency virus). It was thought that the CMV vector generated and maintained T-cells important in controlling SIV, and half of the monkeys that were given it experienced durable control of their SIV. “This latest research suggests that certain immune responses elicited by a new vaccine may also have the ability to comOSHU’s Dr. Picker pletely remove HIV from the body,” said research team leader Louis Picker, MD, associate director of the Oregon Health & Science University Vaccine and Gene Therapy Institute, in a press release. The early data was published online September 12 in Nature.
Photo: Chris Knight | Picker: OHSU.com
All-oral simeprevir and sofosbuvir hep C treatment Hepatitis C patients with advanced liver fibrosis or cirrhosis saw a sustained virologic response (SVR) rate of 96 to 100% with the use of the all-oral, once-daily therapy of simeprevir and sofosbuvir, with or without ribavirin, reported research pharmaceutical company Medivir. “The high SVR rates seen in genotype 1 prior null responders [those who did not respond to previous treatment attempts] and treatment-naïve patients [those on treatment for the first time] with advanced liver disease in the COSMOS study and the safety profile of the combination are highly encouraging. We look forward to the final results of this study in difficult-tocure patients,” said researcher Charlotte Edenius in a company press release. The findings were from interim, 12-week research.
PrEP study for young men Project PrEPare is looking for HIVnegative young men who have sex with men (MSM, including those who do not consider themselves to be gay) ages 15–17 to participate in an HIV prevention study. The study looks at the use of Truvada, a pill which is already on the market
for both HIV treatment and prevention, called PrEP, or pre-exposure prophylaxis. “Despite the FDA’s approval of PrEP, we cannot simply assume that the results of these studies will be the same in other vulnerable populations in the United States,” Project PrEPare reported in a press release. “In the U.S., youth ages 13–29 years accounted for 39% of all new HIV infections in 2009. Over two-thirds (69%) of all new youth infections occurred in MSM and among young black MSM, and new HIV infections increased 48% from 2006–2009. Yet, in the [PrEP] studies, not a single participant was under the age of 18 and only a small proportion of the participants in the United States were between the ages of 18–24. Understanding the safety, acceptability, and feasibility of PrEP in youth is critical, as youth have unique behavioral and biological considerations that are important to understand.” Go to projectprepare.net .
First rapid test for antigen and antibodies In August, the FDA approved the first rapid test to detect both HIV antigen and HIV antibodies. HIV antigen allows for earlier diagnosis of infection than the older tests looking for only antibodies. Both antigen and antibodies form part
of the body’s response to infection. The Alere Determine HIV-1/2 Ag/Ab Combo is available only in health care settings. As seen in its name, the test looks for HIV-1, most common in Europe and North America, as well as HIV-2, most commonly found in Africa and the Caribbean.
20 years of research for positive women The National Institutes of Health reported in August that, “The largest and longestrunning study to investigate the impact of HIV on women in the United States marks its 20th anniversary this month. Findings from the Women’s Interagency HIV Study (WIHS) have helped define how best to treat HIV-infected women in the United States and globally. The National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health, established the WIHS in 1993 in response to a dramatic increase in AIDS cases among women in the United States.”
ViiV Healthcare interactive website ViiV Healthcare, maker of the HIV medications Tivicay, Ziagen, Epivir, and Epzicom, among others, launched a new interactive website for people living with HIV, MyHIVHangUp.com. The website uses online tools and resources to address apprehensions and questions patients may face when starting therapy. This includes the ability to talk openly with medical providers. Site resources include the Treatment Readiness Check, the Doctor Discussion Guide, and the “Myth Buster Quiz.”
Adherence help for PrEP A sub-analysis from the Partners PrEP study, reported in September, found adherence levels of 97 to 99% with intensified adherence counseling. The
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Briefly There’s been a 53% decrease in HIV prevalence among applicants for U.S. military service between 2008 and 2013, according to the Medical Surveillance Monthly Report. Prevalence refers to the number of people living with HIV at a given time, regardless of whether or not they know of their infection. Military screening for HIV began in 1990.
Federal HIV discrimination case settled The Justice Department announced in July that, as part of its Barrier-Free Health Care Initiative, it has reached a settlement with Barix Clinics under the Americans with Disabilities Act (ADA). The settlement resolves allegations that Barix Clinics, which operates bariatric treatment facilities in Michigan and Pennsylvania, violated the ADA by refusing or cancelling surgery for two individuals because they have HIV. Barix Clinics must pay $20,000 to the first complainant and $15,000 to the second, as well as a $10,000 civil penalty.
ADAP Crisis Task Force announces continued pharma support The ADAP Crisis Task Force (ACTF) announced in July that it has reached an agreement with AbbVie, Gilead Sciences, Merck, and ViiV Healthcare to extend the voluntary discounts and rebates, as well as price freezes, available to all 10
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state ADAPs through December 31, 2014. “We thank AbbVie, Gilead Sciences, Merck and ViiV Healthcare for their ongoing commitment to helping ADAPs bridge the gap in providing life-saving medications to people living with HIV,” said Chris Hanson, an ACTF member and manager of the Michigan ADAP.
Injustice: The lives of four women dealing with HIV criminalization in Canada in the documentary, Positive Women.
Condoms in California prisons The California Senate has passed Assembly Bill 999 which would allow condom distribution in state prisons. The proposal, approved in September, then went to the General Assembly for approval. The bill was sponsored by Assemblyman Rob Bonta (D-Oakland). Senator Rod Wright (D-Los Angeles) sponsored the bill in the Senate, saying condoms are cheaper than treatment of disease. An earlier bill to distribute condoms in prison was vetoed by former Governor Arnold Schwarzenegger.
Merck’s positive survey Merck & Co., Inc., maker of the popular HIV drug Isentress, reported results in September from an online survey of more than 300 people living with HIV. The company reported that while nearly all said they are proactive about managing their health, seven out of 10 said they would like to spend more time talking with their doctors. Nearly 80 percent said they prepare for doctors visits using strategies such as preparing a list of questions and talking with others who are also HIVpositive. The survey also looked at such things as whether patients understood the information given by their doctors
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and whether or not they had access to resources beyond their medical care. Read more at www.projectidesign.com.
Canadian documentary looks at HIV criminalization Positive Women: Exposing Injustice is a 45-minute documentary about the criminalization of HIV non-disclosure in Canada. It portrays the personal stories of four women living with HIV in Canada—a Montréal woman who was charged for not telling her partner that she had HIV at the beginning of an ultimately abusive relationship, a young Toronto woman who chose not to pursue charges against the man who infected her, an Aboriginal woman in Saskatoon who has personally faced extreme stigma and threats, and a Latina who describes the challenges of disclosure and intimate relationships for women living with HIV. According to the movie’s website, their stories are “real, raw, and from the heart, and tell the truth about what it’s like to live in a society that all-too-often criminalizes intimate behavior between consenting adults and discriminates against those living with HIV.” You can view the movie online and order high-resolution DVDs (together with discussion guides) from the Canadian HIV/AIDS Legal Network. Go to positivewomenthemovie.org. —From PA E-News
Photo: POSITIVEWOMENTHEMOVIE.ORG
study of more than 2,300 serodiscordant couples (one partner has HIV and the other doesn’t) had an overall adherence level of 80%, with a resulting 75% protection rate against acquiring HIV with the use of Truvada for prevention. While noting the limitations of the sub-analysis, the researchers reported that, “Nevertheless, these findings provide further support for the ability of PrEP to prevent HIV acquisition when taken regularly; they suggest that adherence interventions in the implementation setting should address sexual behavior, risk perception, and heavy alcohol use; and they provide data to guide ethical decisions about resource allocation for prevention and treatment of HIV infection.” Read the study online at the Public Library of Science website, www.plosmedicine.org.
CONFERENCE UPDATE ICAAC 2013 DENVER
New drugs advance as treatment continues to improve By Enid Vazquez
N
early 9,000 attendees gathered to discuss the latest infectious disease research at the 53rd Interscience Conference on Antimicrobial Agents and Chemotherapy (ICAAC), held in Denver in September.
Photo: Thinkstockphotos
Tivicay vs. Prezista There was 48-week data comparing the recently approved Tivicay (dolutegravir) with the powerhouse Prezista (darunavir). In the FLAMINGO Study, Tivicay was found to be superior to Prezista (which must be taken with Norvir). Of the 242 participants in each group, 90 percent had undetectable viral loads (less than 50 copies per mL) on Tivicay compared to 83 percent of those on Prezista. CD4 count increases were the same, about 210 for each medication. The research team estimated that superiority was shown because of a lower rate of drop-outs due to adverse events and “other reasons” with Tivicay, along with greater efficacy for people who started with a baseline viral load of more than 100,000. Three individuals (1%) stopped Tivicay due to adverse events vs.
nine (4%) of those taking Prezista. In clinical studies, other drop-outs are the results of such things as moving away or becoming incarcerated. The open-label design of the study, however, whereby it’s known which medication is being given, could potentially add some bias in that participants or their medical provider tend to be more quick to give up on the established drug—to drop out. They may, for example, be quicker to discontinue due to side effects rather than hanging in there when they don’t know what drug is being given (closed-label) and hence, the side effect profile is not established. Questions from the audience raised this and other concerns about the data. Still, for each group, 25 percent of participants started with a baseline viral load of more than 100,000 (a total of 122 individuals) and in this group, 93 percent achieved undetectable viral loads on
Tivicay compared with 70 percent of those on Prezista. For those who started with less than 100,000 copies, the efficacy was virtually the same, 88% vs. 87%. Two participants had virologic failure (detectable viral load) in each group, but none had developed drug resistance with treatment failure. The most common side effects were diarrhea (17% for Tivicay vs. 29% for Prezista), nausea (16% vs. 18%), and headache (15% vs. 10%). All study participants were treatmentnaïve, meaning that this was their first time on HIV therapy. This group generally has the best response to treatment. In 192-week data with this population in the ARTEMIS study, 70 percent remained undetectable with Prezista. It is one of two protease inhibitors recommended in U.S. treatment guidelines for treatment-naïve individuals. Tivicay is in the integrase inhibitor class of HIV drugs (like Isentress and elvitegravir, currently available only as part of Stribild). Participants took either Truvada or Epzicom along with their primary drug. >>
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CONFERENCE UPDATE ICAAC 2013 DENVER
TAF vs. Viread Tenofovir alafenamide fumarate (TAF), the new and possibly improved version of tenofovir DF, or TDF (brand name Viread, one of the two drugs in the top-selling Truvada and Atripla, also found in Complera and Stribild) continues to show advantages compared to the current formulation. After almost one year of therapy, TDF and TAF were similar in efficacy. In terms of drug resistance, however, TAF continued to outdo TDF. While three individuals in each treatment group experienced virologic failure (their viral load did not get to undetectable or did not stay there), none of the three taking TAF had drug resistance mutations while two of the three on TDF did. Drug resistance can limit future treatment options. Newer, secondgeneration HIV drugs are developed in part to avoid the development of drug resistance. Moreover, TAF showed less evidence of kidney and bone toxicity, which has been of concern with TDF (although not a big problem for this drug, which has been on the market for more than 10 years and is still a preferred nucleoside analog in current treatment guidelines). On the other hand, four of the individuals (3.6%) on TAF discontinued due to an adverse event vs. none of those on TDF. Moreover, nausea was almost twice as common in the TAF arm (21% vs. 12%). There was also a higher rate of increased levels of LDL (“bad” cholesterol), explained by the fact that TDF lowers LDL levels and the lower dose of TAF does not. However, TAF allows for greater drug delivery with a smaller dose (10 mg for TAF vs. 300 mg for TDF). There were 150 individuals in the study, two given TAF for every one person put on TDF. At 48 weeks, TDF was similar to TAF in terms of virologic efficacy, with 88 percent of people taking either drug (along with elvitegravir, cobicistat, and emtricitabine) achieving undetectable viral loads. Both treatments were given in the form of a single tablet regimen, with the TDF combination given as the single tablet regimen 12
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Stribild, which is already commercially available. TAF is still in the developmental stages.
Truvada prescriptions for prevention Gilead Sciences presented information on the prescriptions of their HIV drug Truvada (which contains tenofovir DF and emtricitabine) when used for prevention of HIV infection, called PrEP (pre-exposure prophylaxis). Truvada received FDA approved labeling for use as PrEP in July of 2012. The company reported that people who are prescribed Truvada for PrEP as opposed to those using the drug for HIV treatment are more likely to be: n Treated
by providers not working in infectious disease (3.8 times higher) n Women (1.8 times higher) n Under age 25 (1.4 times higher) n Residents of the southeastern part of the U.S. (1.4 times higher) Between January 2011 and the end of March of this year, 1,774 individuals were prescribed Truvada for PrEP. (Under offlabel prescriptions, Truvada was available for prevention before its FDA approval for this use.) Nearly half (47.7 percent) were women. Youth under 25 who were prescribed PrEP went up from 3 percent in 2011 to 13.6 percent overall, but the average age of PrEP users was 39. In 2011, women made up 28.7 percent of PrEP users. Regionally, 32% of PrEP prescriptions were written in the South, 24% each were in the Northwest and West, and 18% were in the Midwest. PrEP prescriptions were written in approximately 700 cities in 49 states. More than one-third (37 percent) of the prescribing clinicians also wrote prescriptions for Truvada as HIV therapy, so the majority were not routine prescribers of this HIV medication. Six prescriber specialties wrote 75% of prescriptions: n Family
practice (16 percent) medicine (15 percent)
n Internal
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n
Emergency medicine (14 percent) disease (12 percent) n Nurse practitioners (9 percent) n Physician assistants (8 percent) n Infectious
Approximately 750 of the 1,774 prescriptions were written before the approval of Truvada for PrEP, showing that there hasn’t been a great surge in use of the new prevention method.
MK-1439 (doravirine) Early data on the HIV drug MK-1439 (doravirine) in eight HIV-negative men found increased levels of the drug when taken with Norvir (ritonavir). Norvir is commonly used to boost blood levels of HIV medications, allowing for smaller or less frequent doses. The men were also given the widely used HIV med Viread. The research, lasting about two months, showed tolerability when these meds were taken together, as well as the possibility of once-daily dosing for MK-1439. The still-experimental drug is a non-nucleoside reverse transcriptase inhibitor (NNRTI), the same class of drugs as Viramune and Sustiva (most commonly taken in the form of Atripla). It is expected to be effective in the face of resistance to the other medications in this class.
Second and third regimens get more expensive An analysis of medical databases reported that “HIV continues to be a costly disease.” The research summary said more than one out of five people put on therapy switch to a new treatment within two years, and that “real-world data demonstrate that second-line and third-line ARV [antiretroviral] treatments are significantly more expensive [24% and 41%, respectively] than first-line treatments.” For more details, go to natap.org. Go to natap.org and hivandhepatitis.com
for more information from ICAAC. Special thanks to Joel Gallant, MD, for reviewing this Conference Update.
What’s the scoop on the poop? By Patrick G. Clay, PharmD
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iarrhea is not the problem it once was for people on HIV therapy, but it’s still a significant concern, especially when it can impact ART adherence. But even today’s simplified once-daily combination pills still sometimes caused moderate to severe diarrhea in patients during the clinical trials. What are HIV patients and their providers to do? Historically, though never tested in HIV patients, over-the-counter and prescription anti-diarrheals were used. Thankfully, for the majority of patients, this is enough. For the others for whom it didn’t work or side effects (dry mouth, intermittent constipation-diarrhea) were too much, more radical approaches had to be considered. Enter a new option. On New Year’s Eve 2012, a new drug was approved to treat diarrhea in HIV patients taking ART. The drug is crofelemer or Fulyzaq (pronounced ful-ih-zack). Below is a summary of what we learned about the drug learned while conducting the ADVENT study (http://clinicaltrials.gov/ct2/ show?term=crofelemer&rank=1) and importantly, as presented at this year’s ICAAC conference, who will most likely respond well to Fulyzaq.
What is it? First off, it is a botanical. The bark of the Amazon River delta-based Croton lechleri tree is purified and Fulyzaq is obtained. Tribal shamans traditionally have and continue to use the sap from this tree (also known as “dragon’s blood” because of its red color) for various gastrointestinal issues among other maladies.
Photo: Thinkstockphotos
How does it work? Very simplistically, diarrhea is essentially more water in the gut than needed to “move things along.” Water gets into the gut using channels in the intestine. These channels have gates. Some of the gates are controlled by chloride. Fulyzaq is believed to work by blocking two of these chloride gates. Both gates are located on the luminal enterocytes of the intestinal epithelium
[absorbent cells on the inside of the intestinal linling]. In other words, inside the gut.
poop was in a bucket, could you pour it?” (two times more likely to respond). As far as making life more complicated for patients, earlier this year it was shown at the IAPAC conference (Poster 140) that Fulyzaq patients’ adherence was either maintained or improved after it was added to their ART therapy (iapac.org/
AdherenceConference/assets/ADH8_Poster_ Abstracts.pdf ).
Where does it work? Because Fulyzaq isn’t really absorbed, it works directly on the gut from the inside. Because it doesn’t get into the bloodstream, and the drug-interaction poster at ICAAC (A-1577) confirms this, there is no concern about drug interactions. Those patients taking ritonavir-boosted PI or even Atripla regimens had no detrimental changes in any of their drug levels, viral load, or CD4 counts. (So finally, there is a drug that doesn’t make life more complicated for patients and providers alike!)
How is it taken? The 125 mg enteric coated capsules are taken with or without food twice a day.
In summary Importantly, any infectious cause must be ruled out first! Fulyzaq is an option to consider for those with loose stools daily after the non-prescription agents do not satisfy the goals for the patient. It is well tolerated, doesn’t cause drug interactions, and is easily incorporated into existing medication plans. The product website contains full prescribing, as well as patient assistance program information (fulyzaq.com). Patrick Clay, PharmD, is a professor of pharmacotherapy at the University of North Texas System College of Pharmacy in Fort Worth. Email Patrick.Clay@unthsc.edu.
Who is most likely to benefit from Fulyzaq? Data presented at ICAAC (Poster H-1264) showed that the drug appears to have the greatest success in patients with the following four characteristics of their bowel movements: two or more per day (six times more likely to respond), more than two years of loose stools (approximately 2.5 times more likely to respond), use of anti-diarrheal previously (up to 27 times more likely to respond), used an anti-diarrheal within the last four weeks without benefit (six times more likely to respond), and basically “pourable poop.” Yes, that was how we asked the question during the study—”If your POSITIVELY AWA RE
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Individual with HIV
options. y HIV treatment rn more about m lea to y ad re s ose wa I sional and we ch althcare profes he y m to e ok uld sp So I . He told me it co my HIV regimen of rt pa as SS ISENTRE s and lifest yle. may fit my need fight my HIV and time. see you next I can’t wait to
In a clinical study lasting more than 4 years (240 weeks), patients being treated with HIV medication for the first time demonstrated that ISENTRESSÂŽ (raltegravir) plus Truvada:
INDICATION ISENTRESS is a prescription HIV medicine used with other HIV medicines to treat adults with human immunodeficiency virus (HIV) infection. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). The use of other medicines active against HIV in combination with ISENTRESS may increase your ability to fight HIV. ISENTRESS does not cure HIV infection or AIDS. Patients must stay on continuous HIV therapy to control infection and decrease HIV-related illnesses. IMPORTANT RISK INFORMATION Severe, potentially lifethreatening, and fatal skin reactions and allergic reactions have been reported in some patients taking ISENTRESS. If you develop a rash with any of the following symptoms, stop using ISENTRESS and contact your doctor right away: fever, generally ill feeling, extreme tiredness, muscle or joint aches, blisters or sores in mouth, blisters or peeling of skin, redness or swelling of the eyes, swelling of the mouth or face, problems breathing. Sometimes allergic reactions can affect body organs, like the liver. Contact your doctor right away if you have any of the following signs or symptoms of liver problems: yellowing of the skin or whites of the eyes, dark or tea-colored urine,
May reduce viral load to undetectable (less than 50 copies/mL) May significantly increase CD4 cell counts ISENTRESS may not have these effects on all patients Patients had a low rate of these moderate-to-severe common side effects (that interfered with or kept patients from performing daily activities): trouble sleeping (4%), headache (4%), nausea (3%), dizziness (2%), and tiredness (2%).
pale-colored stools/bowel movements, nausea/vomiting, loss of appetite, pain, aching or tenderness on the right side below the ribs. Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your doctor right away if you start having new symptoms after starting your HIV medicine. People taking ISENTRESS may still develop infections or other conditions associated with HIV infections. The most common side effects of ISENTRESS include: dizziness, headache, nausea, tiredness and trouble sleeping. Less common side effects include: allergic reaction, depression, hepatitis, genital herpes, herpes zoster including shingles, kidney failure, kidney stones, stomach pain, suicidal thoughts and actions, vomiting and weakness.
serious muscle problem that can lead to kidney problems. Rash occurred more often in patients taking ISENTRESS and darunavir/ritonavir (Prezista) together, than with either drug separately, but was generally mild. These are not all the possible side effects of ISENTRESS. For more information, ask your doctor or pharmacist. Tell your doctor if you have any side effect that bothers you or that does not go away. Tell your doctor about all your medical conditions, including if you have any allergies, are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed. ISENTRESS is not recommended for use during pregnancy. Women with HIV should not breastfeed because their babies could be infected with HIV through their breast milk. Tell your doctor about all the medicines you take, including: prescription medicines like rifampin (a medicine commonly used to treat tuberculosis), non-prescription medicines, vitamins, and herbal supplements.
Tell your doctor before beginning ISENTRESS if you have a history of muscle disorders (rhabdomyolysis or myopathy) or increased creatine kinase or if you are taking medications known to cause these conditions such as statins, fenofibrate, gemfibrozil or zidovudine.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call FDA at 1-800-FDA-1088.
Tell your doctor right away if you get unexplained muscle pain, tenderness, or weakness while taking ISENTRESS. This may be a sign of a rare but
Please read the Patient Information on the adjacent page for more detailed information.
Need help paying for ISENTRESS? Call 1-866-350-9232 Talk to your healthcare professional about ISENTRESS and visit isentress.com Brands mentioned are the trademarks of their respective owners. Copyright Š 2013 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. INFC-1049069-0009 08/13
Patient Information ISENTRESS ® (eye sen tris) (raltegravir) Film-Coated Tablets Read this Patient Information before you start taking ISENTRESS and each time you get a refill. There may be new information. This information does not take the place of talking with your doctor about your medical condition or your treatment. What is ISENTRESS? ISENTRESS is a prescription HIV medicine used with other HIV medicines to treat adults with human immunodeficiency virus (HIV-1) infection. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). When used with other HIV medicines, ISENTRESS may reduce the amount of HIV in your blood (called “viral load”). ISENTRESS may also help to increase the number of CD4 (T) cells in your blood which help fight off other infections. Reducing the amount of HIV and increasing the CD4 (T) cell count may improve your immune system. This may reduce your risk of death or infections that can happen when your immune system is weak (opportunistic infections). ISENTRESS does not cure HIV infection or AIDS. People taking ISENTRESS may still develop infections or other conditions associated with HIV infection. Some of these conditions are pneumonia, herpes virus infections, and Mycobacterium avium complex (MAC) infections. Patients must stay on continuous HIV therapy to control infection and decrease HIV-related illnesses. Avoid doing things that can spread HIV-1 infection to others: • Do not share needles or other injection equipment. • Do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades. • Do not have any kind of sex without protection. Always practice safe sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. Ask your doctor if you have any questions on how to prevent passing HIV to other people. What should I tell my doctor before taking ISENTRESS? Before taking ISENTRESS, tell your doctor if you: • have liver problems. • have any other medical conditions. • are pregnant or plan to become pregnant. It is not known if ISENTRESS can harm your unborn baby. Pregnancy Registry: You and your doctor will need to decide if taking ISENTRESS is right for you. If you take ISENTRESS while you are pregnant, talk to your doctor about how you can be included in the Antiretroviral Pregnancy Registry. The purpose of the registry is to follow the health of you and your baby. • are breastfeeding or plan to breastfeed. - Do not breastfeed if you are taking ISENTRESS. You should not breastfeed if you have HIV because of the risk of passing HIV to your baby. - Talk with your doctor about the best way to feed your baby. Tell your doctor about all the medicines you take, including: prescription and nonprescription medicines, vitamins, and herbal supplements. Taking ISENTRESS and certain other medicines may affect each other causing serious side effects. ISENTRESS may affect the way other medicines work and other medicines may affect how ISENTRESS works. Especially tell your doctor if you take: • rifampin (Rifadin, Rifamate, Rifater, Rimactane), a medicine commonly used to treat tuberculosis. Ask your doctor or pharmacist if you are not sure whether any of your medicines are included in the list above. Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine. Do not start any new medicines while you are taking ISENTRESS without first talking with your doctor. How should I take ISENTRESS? • Take ISENTRESS exactly as prescribed by your doctor. • You should stay under the care of your doctor while taking ISENTRESS. • Do not change your dose of ISENTRESS or stop your treatment without talking with your doctor first. • Take ISENTRESS by mouth, with or without food. • ISENTRESS Film-Coated Tablets must be swallowed whole. • If you miss a dose, take it as soon as you remember. If you do not remember until it is time for your next dose, skip the missed dose and go back to your regular schedule. Do not double your next dose or take more than your prescribed dose. • If you take too much ISENTRESS, call your doctor or go to the nearest emergency room right away. • Do not run out of ISENTRESS. Get your ISENTRESS refilled from your doctor or pharmacy before you run out. What are the possible side effects of ISENTRESS? ISENTRESS can cause serious side effects including: • Serious skin reactions and allergic reactions. Severe, potentially life-threatening and fatal skin reactions and allergic reactions have been reported in some patients taking ISENTRESS. If you develop a rash with any of the following symptoms, stop using ISENTRESS and contact your doctor right away: ° fever ° muscle or joint aches ° redness or swelling of the eyes ° generally ill feeling ° blisters or sores in mouth ° swelling of the mouth or face ° extreme tiredness ° blisters or peeling of the skin ° problems breathing Sometimes allergic reactions can affect body organs, like the liver. Contact your doctor right away if you have any of the following signs or symptoms of liver problems: ° yellowing of the skin or whites of the eyes ° dark or tea colored urine ° pale colored stools/bowel movements ° nausea/vomiting
° loss of appetite ° pain, aching or tenderness on the right side below the ribs • Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your doctor right away if you start having new symptoms after starting your HIV medicine. The most common side effects of ISENTRESS include: • dizziness • tiredness • headache • trouble sleeping • nausea Less common side effects include: • allergic reaction • kidney failure • depression • kidney stones • genital herpes • stomach pain • hepatitis • suicidal thoughts and actions • herpes zoster • vomiting including shingles • weakness Tell your doctor before beginning ISENTRESS if you have a history of muscle disorders (rhabdomyolysis or myopathy) or increased creatine kinase or if you are taking medications known to cause these conditions such as statins, fenofibrate, gemfibrozil or zidovudine. Tell your doctor right away if you get unexplained muscle pain, tenderness, or weakness while taking ISENTRESS. This may be a sign of a rare but serious muscle problem that can lead to kidney problems. Rash occurred more often in patients taking ISENTRESS and darunavir/ritonavir together than with either drug separately, but was generally mild. Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of ISENTRESS. For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. How should I store ISENTRESS? Film-Coated Tablets: • Store ISENTRESS Film-Coated Tablets at room temperature between 68°F to 77°F (20°C to 25°C). Keep ISENTRESS and all medicines out of the reach of children. General information about ISENTRESS Medicines are sometimes prescribed for conditions that are not mentioned in Patient Information Leaflets. Do not use ISENTRESS for a condition for which it was not prescribed. Do not give ISENTRESS to other people, even if they have the same symptoms you have. It may harm them. This leaflet gives you the most important information about ISENTRESS. If you would like to know more, talk with your doctor. You can ask your doctor or pharmacist for information about ISENTRESS that is written for health professionals. For more information go to www.ISENTRESS.com or call 1-800-622-4477. What are the ingredients in ISENTRESS? ISENTRESS Film-Coated Tablets: Active ingredient: raltegravir Inactive ingredients: microcrystalline cellulose, lactose monohydrate, calcium phosphate dibasic anhydrous, hypromellose 2208, poloxamer 407 (contains 0.01% butylated hydroxytoluene as antioxidant), sodium stearyl fumarate, magnesium stearate. The film coating contains: polyvinyl alcohol, titanium dioxide, polyethylene glycol 3350, talc, red iron oxide and black iron oxide. This Patient Information has been approved by the U.S. Food and Drug Administration. Distributed by: Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. Whitehouse Station, NJ 08889, USA Revised August 2013 USPPI-0518-T-1308R023 Copyright © 2007, 2009, 2011 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. INFC-1049069-0009 08/13 U.S. Patent Nos. US 7,169,780
T:10.5”
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Renaissance Man Carlton wilborn is embracing his evolution By Sue Saltmarsh | Photography by cheryl Mann
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arlton Wilborn has come a long way since I first met him in 1983 when we both worked for Hubbard Street Dance Chicago (HSDC), he as a dancer, I as their first wardrobe supervisor. It was in part an HSDC anniversary celebration that brought him to town and allowed us to sit down and talk about what he’s been doing since he left the company in 1987. He has danced with Madonna and Janet Jackson, appeared on TV and in movies, choreographed, written a couple books, become a life coach, ventured into movie producing and directing, and now has started a foundation to help kids with HIV who‘ve been sexually abused, as he was himself.
It seemed the only thing missing from his Renaissance Man resumé was a bit of painting or sculpting, but he’s not counting that out just yet and I have no doubt it would be another triumph. A word about objectivity—I can’t really be objective about Carlton. He was part of my daily life for almost a decade. I dyed his shoes and washed his costumes, laughed and cried with him, watched him grow up before my eyes, and was honored by his trust and friendship. But this isn’t about
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me, so from now on, I’ll try to take the “I”s out of it as much as possible, because, believe me, Carlton doesn’t need a narrator. One of the things that’s always been true about Carlton is that he doesn’t dwell on the negative. Perhaps it was experiencing abuse as a child and choosing not to give in to victimhood that set the foundation for his tendency to look beyond things that would stop other people in their tracks. Or maybe it was decades of auditions, some good, some bad, that taught him how to accept defeat as a temporary thing and use it as motivation for success. Whatever it was, it helped him in 1985 when he found out that he was HIV-positive. “I remember being back in the studio at home, taking a ballet class. I remember myself at the barre and the resolve that came over me that this fucking thing was not going to take me down! And, I kid you not, to this day, that has been one of the best ballet classes I’ve ever had!” he says. He credits the strength of conviction behind that resolve with enabling him to be here and healthy today. He has an interesting approach to his status. He prefers to say he is “HIV-diagnosed” rather than HIVpositive, feeling the latter gives the disease too much power. “It doesn’t feel right to me. I get that HIV-positive is one thing I am, but I’m also bigger than that,” he says, some of that original defiant resolve in his voice. Since his diagnosis, he’s gone through phases of resisting Western medicine 18
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and trying alternative treatments, getting thinner and weaker (he had as few as 30 T-cells), trying several drugs due to having developed lots of resistance, and finally today, thanks to maintaining a good relationship with his doctor (who respected Carlton’s choices and worked through them with him), he’s on a regimen that works. As is the case with many HIV-diagnosed people, Carlton says his life is better today because of his diagnosis. “It’s changed how I care for myself, how I care for other people, how I perceive life,” he says. “It has put me into ‘cause’ mode, which I’m very grateful for.” The issue of disclosure, however, has been a sticky one for Carlton. While his HIV status has been disclosed to the world through his books and other interviews, he kept it a secret for years when he was first diagnosed. “No one in my family knew until after my Mom passed in 1996, so I was living this very twisted, dodge-and-dart, manipulation kind of game,” he said, pausing as if to look back at those days. “That part of the journey of being HIV-positive was very… sad for me. That I had a view of myself that couldn’t allow me to trust that people who really cared for me would still care for me.” Fortunately, he’s made progress there, though he says he still stumbles occasionally. “The process of self-ownership isn’t easy,” he admits, relating a story about meeting an old friend the night before and mentioning his interview with “a magazine.”
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When his friend asked what magazine it was, at first he claimed not to remember the name of it for fear that the man would then assume he has HIV and react negatively. “I stayed with it for about 10 minutes and then I faked that I’d suddenly remembered it was Positively Aware, an HIV magazine. I saw a little flicker cross his face and then I steered the conversation onto something else. So that’s the one thing for me that’s still a major process.” Carlton’s resistance to being defined by conventional labels also extends to his race and sexual orientation—though he’s been happily partnered for five years to a man, he has also had heterosexual relationships. Asked what he would say to a young black, gay man who may be uncomfortable with his sexuality and unknowledgeable about his HIV risk and/or status, he answers, “I would tell them that their world is bigger than they perceive it to be and it will become even bigger. I may be black, gay, and HIV-diagnosed, but I’m bigger than each of those things—none of them are all that I am. So if you’re making choices based on what your world, your ‘realm,’ looks like now, that will never get you through, it will never sustain what you are ultimately up to.” And to him the “what you’re ultimately up to” means the inner motivation behind behavior choices outside ourselves that we all make. Using the example of having unprotected sex or sex with drug use, he says, “All of that is because I want to have
an experience from somebody else that affirms that I’m loved and cared about. When people’s core issue is a self-worth issue, that’s where we have to begin the conversation. Talking about what ‘mode’ of training you get them into—whether it’s Afro-centric or in this language or that language or if it’s about condoms or not—that’s so far from what their real issue is and I’ve found that a lot of organizations don’t get into that kind of deep, core conversation. In your silent moments, how is it that you’re thinking about yourself? That’s going to determine how you scope your life. “It’s important, young black man, for you to get real with yourself about how you see yourself. It’s broader than what you understand and it needs to be broader than what you know right now.” Carlton has worked with Jeffrey King of L.A.’s In the Meantime Men’s Group, which creates a safe, accepting place for black gay men to come to have those kinds of conversations. Working with those young men, he acknowledges that sometimes he adapts the language and media he uses to fit more into their world. But he also likes to push the envelope, expanding their awareness of their own greater capacities. He has also recently launched his own foundation called We Are Gifts, which encourages HIV-diagnosed kids who’ve been sexually abused to use different modes of artistic expression to help them get sooner to the place of authenticity that
I may be black, gay, and HIV-diagnosed, but I’m bigger than each of those things. Carlton strives for himself. The idea was born from his own experience. “For me, it was art that began to allow me to express what was dormant inside of me that I couldn’t get out any other way,” he says. “I want to use all kinds of art—dance, acting, music, writing, painting, sculpting, whatever—to create ‘camp days’ for these kids to take part in.” (Go to gofundme.com/41i0vc to find out more and help fund the first event.) Some of the other irons he has in the fire of his bright life include the movie that premiered here the same week as the HSDC anniversary—The Boarder, in which he stars with Leslie Stevens, another former HSDC dancer, playing a preacher whose family takes in a young boy with reactive attachment disorder or RAD; the completion of an action movie he stars in (also with Leslie) and produced called Breakout; his continued work as a life coach, with perhaps another book on the way? And then, there’s always that late-blooming sculpting career! Some might make the mistake of thinking that Carlton Wilborn is one of those restless New Age-y guys who floats from moment to moment, seeking but never finding some sort of Nirvana. Nothing could be further from the truth. He is never aimless and he has always been fearless in his determination to experience whatever
presents itself, whether it’s new people, a different location, a daring dance move, a new skill, or an unconventional idea. But perhaps it is his adherence to the conventional Christian belief system, as well as the many other facets of his life that prove what he believes—that we are all living within an evolution. “We’re not supposed to be who we were! Life is constantly evolving and it’s only when we resist the shift that we come up against trouble.” As we stood in the ballroom of the Fairmont the night after we did this interview, neither one of us was who we were back in our HSDC days, thankfully… in some ways. But I will always remember with a smile how, on the tiny stage of the Woodstock, Illinois Opera House, his grand jeté stretched from wing to wing, the power of his body making him hang, suspended, as if the very air was holding its breath until gravity claimed him. And those butt-ugly red sweat pants he wore almost every day, lending his occasional moments of dramatic arrogance an air of absurdity. Or how nice it was to see him from the place where we are now—older, wiser, the weavings of our lives holding depth and colors they didn’t have before. Wherever his evolution takes him, one thing is certain—neither HIV nor anything else is going to stand in his way.
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Patient model. Pill shown is not actual size.
What is COMPLERA? COMPLERA is a prescription HIV medicine that is used as a complete regimen to treat HIV-1 in adults who have never taken HIV medicines before and who have an amount of HIV in their blood (this is called “viral load”) that is no more than 100,000 copies/mL. COMPLERA contains 3 medicines – rilpivirine, emtricitabine and tenofovir disoproxil fumarate. It is not known if COMPLERA is safe and effective in children under the age of 18 years. ®
COMPLERA® does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking COMPLERA. Avoid doing things that can spread HIV-1 to others: always practice safer sex and use condoms to lower the chance of sexual contact with body fluids; never reuse or share needles or other items that have body fluids on them, do not share personal items that may contain bodily fluids. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others.
IMPORTANT SAFETY INFORMATION What is the most important information you should know about COMPLERA? COMPLERA® can cause serious side effects: • Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold, especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain. • You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. • Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking COMPLERA, your hepatitis may suddenly get worse. Do not stop taking COMPLERA without first talking to your healthcare provider, as they will need to monitor your health. COMPLERA is not approved for the treatment of HBV.
Who should not take COMPLERA? Do not take COMPLERA if you have ever taken other anti-HIV medicines. COMPLERA may change the effect of other medicines and may cause serious side effects. Your healthcare provider may change your other medicines or change their doses. Do not take COMPLERA if you also take these medicines: • anti-seizure medicines: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal), phenobarbital (Luminal), phenytoin (Dilantin, Dilantin-125, Phenytek) • anti-tuberculosis medicines: rifabutin (Mycobutin), rifampin (Rifater, Rifamate, Rimactane, Rifadin) and rifapentine (Priftin) • proton pump inhibitors for stomach or intestinal problems: esomeprazole (Nexium, Vimovo), lansoprazole (Prevacid), dexlansoprazole (Dexilant), omeprazole (Prilosec), pantoprazole sodium (Protonix), rabeprazole (Aciphex) • more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate • St. John’s wort (Hypericum perforatum) If you are taking COMPLERA you should not take other HIV medicines or other medicines containing tenofovir (Viread, Truvada, Stribild or Atripla); other medicines containing emtricitabine or lamivudine (Emtriva, Combivir, Epivir, Epivir-HBV, Epzicom, Trizivir, Atripla, Stribild or Truvada); rilpivirine (Edurant) or adefovir (Hepsera). In addition, tell your healthcare provider if you are taking the following medications because they may interfere with how COMPLERA works and may cause side effects: • certain antacid medicines containing aluminum, magnesium hydroxide, or calcium carbonate (examples: Rolaids, TUMS). These medicines must be taken at least 2 hours before or 4 hours after COMPLERA. • medicines to block stomach acid including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine HCL (Zantac). These medicines must be taken at least 12 hours before or 4 hours after COMPLERA. • any of these medicines: clarithromycin (Biaxin); erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone), fluconazole (Diflucan), itraconazole (Sporanox), ketoconazole (Nizoral) methadone (Dolophine); posaconazole (Noxafil), telithromycin (Ketek) or voriconazole (Vfend). • medicines that are eliminated by the kidneys like acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex) and valganciclovir (Valcyte).
COMPLERA.
A complete HIV treatment in only 1 pill a day. COMPLERA is for adults who have never taken HIV-1 medicines before and have no more than 100,000 copies/mL of virus in their blood.
Ask your healthcare provider if it’s the one for you.
These are not all the medicines that may cause problems if you take COMPLERA. Tell your healthcare provider about all prescription and nonprescription medicines, vitamins, or herbal supplements you are taking or plan to take.
The most common side effects reported with COMPLERA are trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, and depression. Some side effects also reported include vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles) and pain.
Before taking COMPLERA, tell your healthcare provider if you: liver problems, including hepatitis B or C virus infection, or have abnormal liver tests • Have kidney problems • Have ever had a mental health problem • Have bone problems • Are pregnant or planning to become pregnant. It is not known if COMPLERA can harm your unborn child • Are breastfeeding: Women with HIV should not breastfeed because they can pass HIV through their milk to the baby. Also, COMPLERA may pass through breast milk and could cause harm to the baby
This is not a complete list of side effects. Tell your healthcare provider or pharmacist if you notice any side effects while taking COMPLERA, and call your healthcare provider for medical advice about side effects.
• Have
COMPLERA can cause additional serious side effects: • New or worsening kidney problems, including kidney failure. If you have had kidney problems, or take other medicines that may cause kidney problems, your healthcare provider may need to do regular blood tests. • Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: feeling sad or hopeless, feeling anxious or restless, have thoughts of hurting yourself (suicide) or have tried to hurt yourself. • Changes in liver enzymes: People who have had hepatitis B or C, or who have had changes in their liver function tests in the past may have an increased risk for liver problems while taking COMPLERA. Some people without prior liver disease may also be at risk. Your healthcare provider may need to check your liver enzymes before and during treatment with COMPLERA. • Bone problems can happen in some people who take COMPLERA. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do additional tests to check your bones. • Changes in body fat can happen in people taking HIV medicine. • Changes in your immune system. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider if you start having new symptoms after starting COMPLERA.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088. Additional Information about taking COMPLERA:
• Always take COMPLERA exactly as your healthcare provider tells you to take it.
• Take COMPLERA with food. Taking COMPLERA with food is important to help get the
right amount of medicine in your body. (A protein drink does not replace food. If your healthcare provider stops COMPLERA, make certain you understand how to take your new medicine and whether you need to take your new medicine with a meal.)
Stay under the care of your healthcare provider during treatment with COMPLERA and see your healthcare provider regularly. Please see Brief Summary of full Prescribing Information with important warnings on the following pages.
Learn more at www.COMPLERA.com
BriefBrief Summary Summary of full of Prescribing full Prescribing Information Information
• Worsening Worsening of Hepatitis of Hepatitis B infection. B infection. If youIf have you have hepatitis hepatitis B virus B virus (HBV)(HBV) infection infection and and take take COMPLERA, COMPLERA, your your HBV HBV may may get worse get worse (fl are-up) (fl are-up) if youif stop you stop COMPLERA COMPLERA (kom-PLEH-rah) (kom-PLEH-rah) taking taking COMPLERA. COMPLERA. A “flare-up” A “flare-up” is when is when your your HBV HBV infection infection suddenly suddenly returns returns (emtricitabine, (emtricitabine, rilpivirine, rilpivirine, tenofovir tenofovir disoproxil disoproxil fumarate) fumarate) tablets tablets in a in worse a worse way way thanthan before. before. COMPLERA COMPLERA is notis approved not approved for the for treatment the treatment of of BriefBrief summary summary of full of Prescribing full Prescribing Information. Information. For more For more information, information, please please see see HBV,HBV, so you so must you must discuss discuss your your HBV HBV withwith your your healthcare healthcare provider. provider. the full the Prescribing full Prescribing Information Information including including Patient Patient Information. Information. – Do–not Do let notyour let your COMPLERA COMPLERA run out. run out. RefillRefi your ll your prescription prescription or talk or talk to your to your healthcare healthcare provider provider before before your your COMPLERA COMPLERA is allisgone. all gone. WhatWhat is COMPLERA? is COMPLERA? – Do–not Do stop not stop taking taking COMPLERA COMPLERA without without first fitalking rst talking to your to your healthcare healthcare • COMPLERA • COMPLERA is a prescription is a prescription HIV (Human HIV (Human Immunodefi Immunodefi ciency ciency Virus) Virus) medicine medicine provider. provider. that that is used is used to treat to treat HIV-1HIV-1 in adults in adults – If you – If stop you stop taking taking COMPLERA, COMPLERA, your your healthcare healthcare provider provider will need will need to check to check – who – who havehave never never takentaken HIV medicines HIV medicines before, before, and and your your health health oftenoften and and do blood do blood teststests regularly regularly to check to check your your HBV HBV infection. infection. – who – who havehave an amount an amount of HIV of in HIVtheir in their bloodblood (this(this is called is called ‘viral‘viral load’)load’) that that Tell your Tell your healthcare healthcare provider provider aboutabout any new any new or unusual or unusual symptoms symptoms you may you may is noismore no more thanthan 100,000 100,000 copies/mL. copies/mL. YourYour healthcare healthcare provider provider will measure will measure havehave afterafter you stop you stop taking taking COMPLERA. COMPLERA. your your viralviral load.load. WhoWho should should not take not take COMPLERA? COMPLERA? (HIV (HIV is theis virus the virus that that causes causes AIDSAIDS (Acquired (Acquired Immunodefi Immunodefi ciency ciency Syndrome)). Syndrome)). Do not Do take not take COMPLERA COMPLERA if: if: • COMPLERA • COMPLERA contains contains 3 medicines 3 medicines – rilpivirine, – rilpivirine, emtricitabine, emtricitabine, tenofovir tenofovir • your • your HIV infection HIV infection has been has been previously previously treated treated withwith HIV medicines. HIV medicines. disoproxil disoproxil fumarate fumarate – combined – combined in one in tablet. one tablet. It is Ita complete is a complete regimen regimen to to • you• are you taking are taking any of anytheof following the following medicines: medicines: treattreat HIV-1HIV-1 infection infection and and should should not be notused be used withwith otherother HIV medicines. HIV medicines. – anti-seizure – anti-seizure medicines: medicines: carbamazepine carbamazepine (Carbatrol, (Carbatrol, Equetro, Equetro, Tegretol, Tegretol, • It is • It notis known not known if COMPLERA if COMPLERA is safe is safe and and effective effective in children in children underunder the age the age Tegretol-XR, Tegretol-XR, Teril,Teril, Epitol); Epitol); oxcarbazepine oxcarbazepine (Trileptal); (Trileptal); phenobarbital phenobarbital of 18ofyears 18 years old. old. (Luminal); (Luminal); phenytoin phenytoin (Dilantin, (Dilantin, Dilantin-125, Dilantin-125, Phenytek) Phenytek) • COMPLERA • COMPLERA doesdoes not cure not cure HIV infection HIV infection or AIDS. or AIDS. You must You must stay stay on continuous on continuous – anti-tuberculosis – anti-tuberculosis (anti-TB) (anti-TB) medicines: medicines: rifabutin rifabutin (Mycobutin); (Mycobutin); rifampin rifampin therapy therapy to control to control HIV infection HIV infection and and decrease decrease HIV-related HIV-related illnesses. illnesses. (Rifater, (Rifater, Rifamate, Rifamate, Rimactane, Rimactane, Rifadin); Rifadin); rifapentine rifapentine (Priftin) (Priftin) • Ask• your Ask your healthcare healthcare provider provider if youif have you have any questions any questions about about how how to to – proton pumppump inhibitor inhibitor (PPI)(PPI) medicine medicine for certain for certain stomach stomach or intestinal or intestinal prevent prevent passing passing HIV to HIVother to other people. people. Do not Do share not share or re-use or re-use needles needles or other or other – proton problems: problems: esomeprazole esomeprazole (Nexium, (Nexium, Vimovo); Vimovo); lansoprazole lansoprazole (Prevacid); (Prevacid); injection injection equipment, equipment, and and do not do share not share personal personal itemsitems that that can have can have bloodblood or or dexlansoprazole (Dexilant); (Dexilant); omeprazole omeprazole (Prilosec, (Prilosec, Zegerid); Zegerid); pantoprazole pantoprazole bodybody fluidsfluids on them, on them, like toothbrushes like toothbrushes and and razorrazor blades. blades. Always Always practice practice safersafer dexlansoprazole sodium sodium (Protonix); (Protonix); rabeprazole rabeprazole (Aciphex) (Aciphex) sex by sexusing by using a latex a latex or polyurethane or polyurethane condom condom to lower to lower the chance the chance of sexual of sexual contact contact withwith semen, semen, vaginal vaginal fluidsfluids or blood. or blood. – more – more thanthan 1 dose 1 dose of theof steroid the steroid medicine medicine dexamethasone dexamethasone or dexamethasone or dexamethasone sodium sodium phosphate phosphate WhatWhat is theis most the most important important information information I should I should knowknow about about COMPLERA? COMPLERA? – St.–John’s St. John’s wortwort (Hypericum (Hypericum perforatum) perforatum) COMPLERA COMPLERA can can cause cause serious serious sideside effects, effects, including: including: • If you • If take you take COMPLERA, COMPLERA, you should you should not take: not take: • Build-up • Build-up of anofacid an acid in your in your bloodblood (lactic (lactic acidosis). acidosis). Lactic Lactic acidosis acidosis can can happen happen in some in some people people who who taketake COMPLERA COMPLERA or similar or similar (nucleoside (nucleoside analogs) analogs) – Other – Other medicines medicines that that contain contain tenofovir tenofovir (Atripla, (Atripla, Stribild, Stribild, Truvada, Truvada, Viread) Viread) medicines. medicines. Lactic Lactic acidosis acidosis is a serious is a serious medical medical emergency emergency that that can lead can lead to to – Other – Other medicines medicines that that contain contain emtricitabine emtricitabine or lamivudine or lamivudine (Combivir, (Combivir, death. death. Lactic Lactic acidosis acidosis can be canhard be hard to identify to identify early,early, because because the symptoms the symptoms Emtriva, Emtriva, EpivirEpivir or Epivir-HBV, or Epivir-HBV, Epzicom, Epzicom, Trizivir, Trizivir, Atripla, Atripla, Truvada, Truvada, Stribild) Stribild) couldcould seemseem like symptoms like symptoms of other of other health health problems. problems. Call Call youryour healthcare healthcare – – rilpivirine rilpivirine (Edurant) (Edurant) provider provider rightright awayaway if youif get you any get of anythe of following the following symptoms symptoms which which couldcould be signs be signs of lactic of lactic acidosis: acidosis: – adefovir – adefovir (Hepsera) (Hepsera) ®
•
®
– feel– very feel very weakweak or tired or tired – have – have unusual unusual (not (not normal) normal) muscle muscle painpain
WhatWhat should should I tellI my tellhealthcare my healthcare provider provider before before taking taking COMPLERA? COMPLERA?
Before Before you take you take COMPLERA, COMPLERA, tell your tell your healthcare healthcare provider provider if you: if you: • have • have or had or had liverliver problems, problems, including including hepatitis hepatitis B or BC or virus C virus infection, infection, kidney kidney problems, mental mental health health problem problem or bone or bone problems problems – have – have stomach stomach painpain withwith nausea nausea (feeling (feeling sick sick to your to your stomach) stomach) or vomiting or vomiting problems, • are• pregnant are pregnant or plan or plan to become to become pregnant. pregnant. It is Itnotis known not known if COMPLERA if COMPLERA can can – feel– cold, feel cold, especially especially in your in your armsarms and and legs legs harmharm your your unborn unborn child.child. – feel– dizzy feel dizzy or lightheaded or lightheaded Pregnancy Pregnancy Registry. Registry. ThereThere is a pregnancy is a pregnancy registry registry for women for women who who taketake – have – have a fast a fast or irregular or irregular heartbeat heartbeat antiviral antiviral medicines medicines during during pregnancy. pregnancy. The purpose The purpose of this of this registry registry is toiscollect to collect information aboutabout the health the health of you of and you and your your baby.baby. Talk Talk to your to your healthcare healthcare • Severe • Severe liverliver problems. problems. Severe Severe liverliver problems problems can happen can happen in people in people who who taketake information provider provider aboutabout how how you can you take can take part part in this in this registry. registry. COMPLERA. COMPLERA. In some In some cases, cases, thesethese liverliver problems problems can lead can lead to death. to death. YourYour liverliver may may become become largelarge (hepatomegaly) (hepatomegaly) and and you may you may develop develop fat infatyour in your liverliver • are• breast-feeding are breast-feeding or plan or plan to breast-feed. to breast-feed. You You should should not breastfeed not breastfeed if youif you (steatosis). (steatosis). Call Call youryour healthcare healthcare provider provider rightright awayaway if youif get you any get of anythe of the havehave HIV because HIV because of the of risk the risk of passing of passing HIV to HIVyour to your baby.baby. Do not Do breastfeed not breastfeed following following symptoms symptoms of liver of liver problems: problems: if youif are you taking are taking COMPLERA. COMPLERA. At least At least two of twotheof medicines the medicines contained contained in in COMPLERA COMPLERA can be canpassed be passed to your to your babybaby in your in your breast breast milk.milk. We do Wenot do know not know – your – your skin skin or theor white the white part part of your of your eyeseyes turnsturns yellow yellow (jaundice) (jaundice) whether whether this this couldcould harmharm your your baby.baby. Talk Talk to your to your healthcare healthcare provider provider aboutabout the the – dark – dark “tea-colored” “tea-colored” urineurine bestbest way way to feed to feed your your baby.baby. – light-colored – light-colored bowelbowel movements movements (stools) (stools) Tell your Tell your healthcare healthcare provider provider about about all the all medicines the medicines you take, you take, including including – have – have trouble trouble breathing breathing
– loss – loss of appetite of appetite for several for several daysdays or longer or longer
prescription prescription and and nonprescription nonprescription medicines, medicines, vitamins, vitamins, and and herbal herbal supplements. supplements.
– nausea – nausea
•
– stomach – stomach painpain •
You• You maymay be more be more likelylikely to get to lactic get lactic acidosis acidosis or severe or severe liverliver problems problems if if you are you female, are female, veryvery overweight overweight (obese), (obese), or have or have beenbeen taking taking COMPLERA COMPLERA for afor long a long time.time.
• COMPLERA COMPLERA maymay affect affect the way the way otherother medicines medicines work,work, and and otherother medicines medicines maymay affect affect how how COMPLERA COMPLERA works, works, and and maymay cause cause serious serious sideside effects. effects. If If you take you take certain certain medicines medicines withwith COMPLERA, COMPLERA, the amount the amount of COMPLERA of COMPLERA in your in your bodybody may may be too below too and low and it may it may not work not work to help to help control control your your HIV infection. HIV infection. The HIV The virus HIV virus in your in your bodybody may may become become resistant resistant to COMPLERA to COMPLERA or other or other HIV HIV medicines medicines that that are like are it. like it.
The most The most common common side side effects effects of COMPLERA of COMPLERA include: include: Especially Especially tell your tell your healthcare healthcare provider provider if youif take: you take: an •antacid an antacid medicine medicine that that contains contains aluminum, aluminum, magnesium magnesium hydroxide, hydroxide, or or • trouble • trouble sleeping sleeping (insomnia) (insomnia) calcium calcium carbonate. carbonate. If youIf take you take an antacid an antacid during during treatment treatment withwith COMPLERA, COMPLERA, • abnormal • abnormal dreams dreams taketake the antacid the antacid at least at least 2 hours 2 hours before before or atorleast at least 4 hours 4 hours afterafter you you taketake COMPLERA. COMPLERA. • headache • headache • a medicine • a medicine to block to block the acid the acid in your in your stomach, stomach, including including cimetidine cimetidine • dizziness • dizziness (Tagamet), (Tagamet), famotidine famotidine (Pepcid), (Pepcid), nizatidine nizatidine (Axid), (Axid), or ranitidine or ranitidine hydrochloride hydrochloride • diarrhea • diarrhea (Zantac). (Zantac). If youIf take you take one of onethese of these medicines medicines during during treatment treatment withwith • nausea COMPLERA, COMPLERA, taketake the acid the acid blocker blocker at least at least 12 hours 12 hours before before or atorleast at least 4 hours 4 hours • nausea afterafter you take you take COMPLERA. COMPLERA. • rash • rash •
•
any• of anythese of these medicines medicines (if taken (if taken by mouth by mouth or injection): or injection):
•
– clarithromycin – clarithromycin (Biaxin) (Biaxin)
• tiredness tiredness
•
• depression depression
– erythromycin – erythromycin (E-Mycin, (E-Mycin, Eryc,Eryc, Ery-Tab, Ery-Tab, PCE,PCE, Pediazole, Pediazole, Ilosone) Ilosone)
•
• vomiting vomiting
– itraconazole – itraconazole (Sporanox) (Sporanox)
•
• stomach stomach painpain or discomfort or discomfort
– ketoconazole – ketoconazole (Nizoral) (Nizoral)
•
skin• skin discoloration discoloration (small (small spotsspots or freckles) or freckles)
– methadone – methadone (Dolophine) (Dolophine)
•
• pain pain
– posaconazole – posaconazole (Noxafi (Noxafi l) l) – telithromycin – telithromycin (Ketek) (Ketek) – voriconazole – voriconazole (Vfend) (Vfend) •
Additional Additional common common side side effects effects include: include:
– fluconazole – fluconazole (Diflucan) (Diflucan)
Tell your Tell your healthcare healthcare provider provider if youif have you have any side any side effecteffect that that bothers bothers you or youthat or that doesdoes not go notaway. go away. TheseThese are not are all notthe all possible the possible side side effects effects of COMPLERA. of COMPLERA. For more For more information, information, ask your ask your healthcare healthcare provider provider or pharmacist. or pharmacist.
• medicines medicines that that are eliminated are eliminated by the by kidney, the kidney, including including acyclovir acyclovir (Zovirax), (Zovirax), your your doctor doctor for medical for medical advice advice aboutabout side side effects. effects. You may You may report report side side cidofovir cidofovir (Vistide), (Vistide), ganciclovir ganciclovir (Cytovene (Cytovene IV, Vitrasert), IV, Vitrasert), valacyclovir valacyclovir (Valtrex), (Valtrex), Call Call effects effects to FDA to FDA at 1-800-FDA-1088 at 1-800-FDA-1088 (1-800-332-1088). (1-800-332-1088). and and valganciclovir valganciclovir (Valcyte) (Valcyte)
WhatWhat are the are possible the possible sideside effects effects of COMPLERA? of COMPLERA? COMPLERA COMPLERA can can cause cause serious serious sideside effects, effects, including: including: • See • See “What “What is theis most the most important important information information I should I should knowknow about about COMPLERA?” COMPLERA?” •
• New New or worse or worse kidney kidney problems, problems, including including kidney kidney failure, failure, can happen can happen in in somesome people people who who taketake COMPLERA. COMPLERA. YourYour healthcare healthcare provider provider should should do blood do blood teststests to check to check your your kidneys kidneys before before starting starting treatment treatment withwith COMPLERA. COMPLERA. If youIf you havehave had had kidney kidney problems problems in thein past the past or need or need to take to take another another medicine medicine that that can cause can cause kidney kidney problems, problems, your your healthcare healthcare provider provider may may needneed to dotoblood do blood teststests to check to check your your kidneys kidneys during during your your treatment treatment withwith COMPLERA. COMPLERA.
•
• Depression Depression or mood or mood changes. changes. Tell your Tell your healthcare healthcare provider provider rightright awayaway if if you have you have any of anythe of following the following symptoms: symptoms:
– feeling – feeling sad or sadhopeless or hopeless
HowHow should should I take I take COMPLERA? COMPLERA? •
• Stay Stay under under the care the care of your of your healthcare healthcare provider provider during during treatment treatment withwith COMPLERA. COMPLERA.
•
• Take Take COMPLERA COMPLERA exactly exactly as your as your healthcare healthcare provider provider tellstells you to youtake to take it. it.
•
• Always Always taketake COMPLERA COMPLERA withwith food.food. Taking Taking COMPLERA COMPLERA withwith foodfood is important is important to help to help get the get right the right amount amount of medicine of medicine in your in your body.body. A protein A protein drinkdrink is notis not a substitute a substitute for food. for food. If your If your healthcare healthcare provider provider decides decides to stop to stop COMPLERA COMPLERA and and you are you switched are switched to new to new medicines medicines to treat to treat HIV that HIV that includes includes rilpivirine rilpivirine tablets, tablets, the rilpivirine the rilpivirine tablets tablets should should be taken be taken only only withwith a meal. a meal.
•
Do •not Do change not change your your dosedose or stop or stop taking taking COMPLERA COMPLERA without without first fitalking rst talking withwith your your healthcare healthcare provider. provider. See your See your healthcare healthcare provider provider regularly regularly whilewhile taking taking COMPLERA. COMPLERA.
•
• If miss If you you miss a dose a dose of COMPLERA of COMPLERA within within 12 hours 12 hours of theof time the time you usually you usually taketake it, take it, take your your dosedose of COMPLERA of COMPLERA withwith foodfood as soon as soon as possible. as possible. Then,Then, taketake your your next next dosedose of COMPLERA of COMPLERA at the at regularly the regularly scheduled scheduled time.time. If youIf miss you miss a dose a dose of COMPLERA of COMPLERA by more by more thanthan 12 hours 12 hours of theof time the time you usually you usually taketake it, wait it, wait and and thenthen taketake the next the next dosedose of COMPLERA of COMPLERA at the at regularly the regularly scheduled scheduled time.time.
•
Do •not Do take not take moremore thanthan your your prescribed prescribed dosedose to make to make up for upafor missed a missed dose.dose.
– feeling – feeling anxious anxious or restless or restless – have – have thoughts thoughts of hurting of hurting yourself yourself (suicide) (suicide) or have or have triedtried to hurt to hurt yourself yourself •
• Change Change in liver in liver enzymes. enzymes. People People withwith a history a history of hepatitis of hepatitis B or BC or virus C virus infection infection or who or who havehave certain certain liverliver enzyme enzyme changes changes may may havehave an increased an increased risk risk of developing of developing new new or worsening or worsening liverliver problems problems during during treatment treatment withwith COMPLERA. COMPLERA. LiverLiver problems problems can can also also happen happen during during treatment treatment withwith COMPLERA COMPLERA in people in people without without a history a history of liver of liver disease. disease. YourYour healthcare healthcare provider provider may may needneed to dototests do tests to check to check your your liverliver enzymes enzymes before before and and during during treatment treatment withwith COMPLERA. COMPLERA.
This This BriefBrief Summary Summary summarizes summarizes the most the most important important information information aboutabout COMPLERA. COMPLERA. If youIf would you would like more like more information, information, talk talk withwith your your healthcare healthcare provider. provider. You can You also can also ask your ask your healthcare healthcare provider provider or pharmacist or pharmacist for for information information aboutabout COMPLERA COMPLERA that that is written is written for health for health professionals, professionals, or call or call 1-800-445-3235 1-800-445-3235 or goortogowww.COMPLERA.com to www.COMPLERA.com
•
• Bone Bone problems problems can happen can happen in some in some people people who who taketake COMPLERA. COMPLERA. BoneBone Issued: Issued: JuneJune 20132013 problems problems include include bonebone pain,pain, softening softening or thinning or thinning (which (which may may leadlead to to fractures). fractures). YourYour healthcare healthcare provider provider may may needneed to dotoadditional do additional teststests to check to check your your bones. bones.
•
• Changes Changes in body in body fat can fat happen can happen in people in people taking taking HIV medicine. HIV medicine. TheseThese changes changes may may include include increased increased amount amount of fatofinfatthein upper the upper backback and and neckneck (“buffalo (“buffalo hump”), hump”), breast, breast, and and around around the main the main part part of your of your bodybody (trunk). (trunk). LossLoss of fatoffrom fat from the legs, the legs, armsarms and and faceface may may also also happen. happen. The cause The cause and and longlong termterm health health effecteffect of these of these conditions conditions are not are known. not known.
•
• Changes Changes in your in your immune immune system system (Immune (Immune Reconstitution Reconstitution Syndrome) Syndrome) can can happen happen whenwhen you start you start taking taking HIV medicines. HIV medicines. YourYour immune immune system system may may get get stronger stronger and and beginbegin to fight to fiinfections ght infections that that havehave beenbeen hidden hidden in your in your bodybody for for a long a long time.time. Tell your Tell your healthcare healthcare provider provider if youif start you start having having new new symptoms symptoms afterafter starting starting your your HIV medicine. HIV medicine.
COMPLERA, the COMPLERA Logo, EMTRIVA, GILEAD, the GILEAD Logo, GSI, HEPSERA, STRIBILD, TRUVADA, VIREAD, and VISTIDE are trademarks of Gilead Sciences, Inc., or its related companies. ATRIPLA is a trademark of Bristol-Myers Squibb & Gilead Sciences, LLC. All other marks referenced herein are the property of their respective owners. ©2013 Gilead Sciences, Inc. All rights reserved. CPAC0056 09/13
Art and AIDS
Visual AIDS preserves the legacy and work of artists with HIV/AIDS By Jeff Berry
T
here is no denying the devastating effect the AIDS epidemic has had on the arts community. Not only has there been an incalculable loss of life and future art that will never be seen or realized, but the work of those who have died, especially early on, was sometimes being disposed of or destroyed by family members either because they didn’t know what to do with it, or were too ashamed or afraid of the stigma associated with HIV and AIDS.
In the summer of 1988, four friends began talking about what they could do about it one night over dinner in an apartment in New York City’s West Village. “The subject of this conversation sounds more grandiose today than it seemed at the time,” writes Robert Atkins in the book NOT OVER: 25 Years of Visual AIDS, which includes color reproductions of over 50 works of art, essays, and interviews by some of the people most closely involved with the organization throughout the years. “During the second half of the 1980s, there were few options for AIDS action other than do-it-yourself activism. Official indifference to those suffering with HIV/AIDS already presaged the near 24
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obliteration of the downtown New York art world as we’d come to know it. We four hoped that we might bring our art-professional skills…to bear on the AIDS crisis.” Today, Visuals AIDS’ mission is to use art “to fight AIDS by provoking dialogue, supporting HIV+ artists, and preserving a legacy, because AIDS is not over.” One of the most daunting tasks of the organization, which is also responsible for A Day With(out) Art and the Red Ribbon, is to preserve the works of artists with HIV/ AIDS and continue their legacy through the Visual AIDS Artist Registry. Most people remember that World AIDS Day, which began in 1988, takes place each year on December 1st, but some may
POSITIVELY AWA RE
Artists of Compiled by Visual AIDS and Sue Saltmarsh
Visual AIDs
Will art save my life? (1996)
Prayer of Hope (1999)
LeMoins was born and raised in St. Louis, Missouri. She attended art school and “did all of the proper things, but I didn’t really start to feel like I was an artist, creating art that mattered, until I tested HIV-positive in 1986 and started making art about that,” she says. Her work has been shown at the Kala Art Institute, the Mission Cultural Center for Latino Arts, and SOMArts Cultural Center. She currently lives in San Francisco, where she’s been for over 30 years, with her partner and daughter.
A painter and sculptor, McDonald’s works often starkly capture the full range of emotions she’s experienced throughout her life. She is also a poet, songwriter, speaker, and works with her church’s AIDS ministry. Perhaps more than anything, “Joyce’s life has become its own work of art, in a way. Her story of prostitution, drug abuse, motherhood, and redemption—as well as her battle with HIV [since 1995] and hepatitis—is as much a piece of art as anything she’s created with paint or clay,” according to TheBody.com, just one place where she has told her story.
Nancer LeMoins
Joyce McDonald
HIV is fun (2013)
Jeffrey Wilson Born in 1973 in Berlin, Germany to U.S. Army parents, Wilson was raised in Portland, Oregon. He worked as a software programmer in Seattle until he was fired for being openly gay. He explored art as therapy and began practicing art “intensively” in 1999. Wilson describes himself as a “feminist, vegan knitter” who is studying Arabic, and living with an adopted cat. He came out as HIV-positive in 2013 and is pursuing “artivism,” believing that “artwork can open hearts, change minds.”
POSITIVELY AWA RE
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not know that it wasn’t until the second year that it really took off. “It was actually, in a way, A Day Without Art that created the awareness of World AIDS Day,” says Nelson Santos, Executive Director of Visual AIDS, who has been with the organization for 13 years. Graduating from The School of the Art Institute in Chicago, Santos moved to New York City in 2000 seeking a job in the arts. He joined Visual AIDS that same year as Assistant Director, and was appointed executive director of the organization in the summer of 2012. “From the beginning,” writes Santos in NOT OVER, “I felt honored to be part of such an amazing organization and its history.” A Day Without Art was the first project of Visual AIDS—in its first year, on December 1, 1989, over 800 art institutions and AIDS organizations participated by dimming the lights, covering up works of art, presenting exhibitions about HIV and AIDS, and sending staff to volunteer at local ASOs (AIDS service organizations). The following year, thousands of organizations and institutions took part. Eventually, the project came to be known as A Day With(out) Art, not only to remember those lost, but also to honor and celebrate today’s artists and their work.
F
rom the beginning, many subgroups formed within the organization that would spawn other projects such as the Electric Blanket, which incorporated the work of over 200 artists mixed with names, facts, and AIDS statistics which were then projected onto public walls and spaces. The Ribbon Project (better known today as the Red Ribbon) was originally an art project by artists to create a meaningful symbol showing support and compassion for those with AIDS and their caregivers. Love it or hate it, the Red Ribbon quickly became an international symbol of HIV/AIDS awareness, and it was purposely never copyrighted in the U.S. to allow it to be freely and widely used by others. Known first simply as the Archive Project and later renamed the Frank Moore Archive Project (in honor of the AIDS activist, artist, and archive cofounder who later succumbed to AIDS in 2002), the Visual AIDS Artist Registry 26
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fresno (dy, Thai, sokha, and lay) (2003)
Richard Renaldi
POSITIVELY AWA RE
Richard Renaldi was born in 1968 in Chicago and received his BFA in photography from New York University. Exhibitions of his photographs have been mounted in galleries and museums throughout the United States and Europe, including the House of Photography in Stockholm; The Robert Morat Gallery in Hamburg; The Nicolaysen Museum in Casper, Wyoming; the Gallery at Hermès, and Yossi Milo Gallery in New York.
Ru PAUL—from the Gay icons series (1996)
Steed Taylor
Educated at the University of North Carolina, American University, and the Skowhegan School for Painting and Sculpture, Steed Taylor’s art practice includes public art projects as well as work for gallery settings. His public art includes road tattoos, one of which is dedicated to the first openly gay and lesbian military service members, as well as a 1996 series of Gay Icons—large painted wooden heads of famous gay people installed on balconies and rooftops. His art has been shown around the country including the Bronx Museum, the Mint Museum, the San Bernardino County Museum, and the Neuberger Museum of Art’s 2001 Biennial Exhibition of Public Art.
I’m in here somewhere (2007)
Frederick Weston
Frederick Weston describes himself as an “African-American man living an alternative lifestyle,” and soon left Detroit, Michigan for the bright lights of Manhattan, where he went to school and entered the working world in order to pay the bills. Art has always called to him, no matter what else he may have been doing. “I have never ‘found’ the time to do my art,” he says. “I ‘make’ the time. I ‘take’ the time.” Weston helped found the guerrilla artist group Underground Railroad, which produced street art and outdoor installations in the mid-1990s, as well as during the difficult period after the 9/11 attacks. “My art is my activism,” he says. “It exposes me as a person.”
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started out as an archive of photographic slide images of works by artists who were living with HIV or had died of AIDS, including such notables as Keith Haring, David Wojnarowicz, and Robert Mapplethorpe. The Frank Moore Archive Project is the largest registry of visual artists with HIV/AIDS and still houses hard copies of artists’ slides and documents, as well as providing grants and exhibition opportunities. Searching the registry, however, had become a cumbersome and laborious process and necessitated manually poring through binders of slides to find any particular image. Today, the Artist Registry is an immense, digitized collection with over 500 artists and 18,000 works of art. The website was redesigned in November 2012 and currently there are 200 artists and thousands of works available online and searchable by artist, title, medium, demographic, or subject matter. The website is continually updated, with all the slides in the registry being converted to digital form.
S
antos says that the only
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Untitled (2013)
John Hanning Born in 1961 in Paragould, Arkansas, Hanning grew up in the “sleepy, Southern town” of Prescott. He attended Memphis College of Art and studied at the School of Visual Arts, Fashion Institute of Technology, and Parsons The New School for Design. Hanning draws from his experiences growing up queer in the South and from how being HIV-positive has informed his life and art. In 1985, Hanning created a character that would evolve into Cosmo, his stick-figure alter-ego and soon-to-be virtual avatar.
POSITIVELY AWA RE
hanning: Jason (Woei-Ping) Chen
parameters for being in the Artist Registry are that the individual is self-defined as an artist and is publicly open about their HIV status. While there is a wide, mixed range of demographics among those in the registry, as reflected in the epidemic itself, for many years, Visual AIDS art exhibits consisted only of HIVpositive artists who were in the archive project. The exhibits held in more recent years have tried to be more inclusive of other artists as well, for two reasons, says Santos. “We didn’t want to limit the voices speaking about HIV or AIDS—there are HIV-negative artists making work about HIV/AIDS or the politics [thereof]—and we also didn’t want to pigeonhole our artists themselves. All of the artists in the registry are HIV-positive, but they’re not necessarily making work about HIV or AIDS.” One recent exhibit by Visual AIDS explored generations of artists, some who were making art in the late ’70s and the ’80s, and then others who were actually born in the ’70s and ’80s. Another exhibit looked at artists and their works before they had HIV, and then after they
My life until now: after the cocktail (1999)
Albert J. Winn
Albert J. Winn’s work is primarily autobiographical and addresses issues of religion, gender, and sexuality and how each informs the other in the context of illness, personal relationships, and memory. He received a National Endowment for the Arts/Western States Arts Federation Fellowship in 1993 for a collection of photographs and stories called, “My Life Until Now,” which deals with his life as a gay Jewish man living with AIDS. He is the creator of “Blood on the Doorpost…the AIDS Mezuzah” which was installed at the Judah L. Magnus Museum in Berkeley in 1996, for World AIDS Day. He was the guest artist and keynote speaker at “Drawing the Line Against AIDS” at the University of Adelaide, Australia. He lives in Los Angeles and is a part-time faculty member at Cal Arts and Moorpark College. Untested (2011)
Joe De Hoyos Joe De Hoyos has been a professional fine artist since 1987 working in the medium of collage. His work has been exhibited nationally and internationally, including Australia, Holland, Italy, San Francisco, Boston, and New York. De Hoyos states, “I am guilty of using collage as a substitute for my own voice. It allows me to say things I may not necessarily feel comfortable expressing in person.” His artwork and apparel design (LOL Brands) can be viewed at lolbrands.com.
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seroconverted. Says Santos, “We’re interested in expanding the dialogue outside of a tight-knit community.” Several artists in the registry are longterm survivors who’ve documented their life and their journey pre- and post-HIV, plus health challenges along the way, including Al Winn, who has a long-term series titled “My Life Until Now,” which portrays his life before HIV, post “cocktail,” and even in preparation for treatment with facial filler for lipoatrophy. Santos points out that there are two distinct kinds of art that can raise awareness about HIV and AIDS. There is the art that speaks to AIDS on a more personal level, such as Winn’s and John Hanning’s, and then there is the more “direct action” artwork, otherwise known as “agitprop,” which uses art to promote an explicit political message. The most well known use of this type of art in the AIDS activism movement was done by the Gran Fury activist and artist collective, which was responsible for many of the propaganda campaigns during the height of ACT UP and the AIDS crisis.
V
Postcards—June 2013
Shan Kelley
A Canadian by birth, Shan Kelly says, “Much of my work is based on recontextualisation, subversion, and exploitation within contemporary culture. The deconstruction of language and identity are themes which figure prominently in an examination of relationships between place, space, and people.” He is a mixed media artist who travels extensively, but nurtures relationships with communities that have hosted him. He has called Montreal his home for the past nine years and has made Mexico his creative base. Self-enforced disclosure (2007, revised 2013)
isual AIDS continues to
work with artists to create their own messaging projects, says Santos, including mini posters, a current tote bag designed by Kate Rosin bearing the words, “AIDS ONGOING GOING ON,” and a project called Play Smart, made up of Artist Registry members and other artists who create sexy, fun images on the front of trading cards. On the flip side of the cards is information about harm reduction, PrEP, and HIV testing, and the cards are then put into condom packets and distributed. HIV/AIDS activism and art has changed dramatically over the years as the epidemic has changed, but one constant throughout has been Visual AIDS, which has been at the forefront and has worked to preserve and will continue to document and archive that which has meaning, evokes emotion, and moves us to action— the art of AIDS.
Greg Mitchell
When his friend, the late activist Spencer Cox, saw his amateur photographs in his apartment, Cox told him, “You really need to show somebody these.” Greg Mitchell took his advice and ended up with three photos being included in a photography gallery show which included “brilliant, legendary photogs who I’d admired for years, and I felt I should be polishing their boots or running to get them lattes rather than sharing wall space with them.” Mitchell is a self-taught photographer, as well as a lawyer, actor, writer, college professor, bookstore owner, budding stage lighting designer, and film/video editor, and is proud to be a living contradiction to F. Scott Fitzgerald’s famous line, “There are no second acts in American lives.”
For more information about Visual AIDS and to view the archive, browse the store, or make a donation go to visualaids.org. 30
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Safe sex: © Keith haring foundation | Haring: ©Patrick McMullan
Safe sex (1988)
Keith Haring Born and raised in Pennsylvania, Keith Haring became an iconic artist and activist of the “plague years” after being diagnosed with AIDS in 1988. His cartoon-like images, including his famous work honoring ACT UP (Ignorance = Fear, Silence = Death), have been part of the history of AIDS in the U.S. In 1989, he established the Keith Haring Foundation, its mandate being to provide funding and imagery to AIDS organizations and children’s programs, and
to expand the audience for Haring’s work through exhibitions, publications, and the licensing of his images. Keith Haring died of AIDS-related complications at the age of 31 on February 16, 1990. A memorial service was held on May 4, 1990 (what would have been his 32nd birthday) at the Cathedral of St. John the Divine in New York City, drawing over 1,000 mourners.
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ABOUT PREZISTA
®
PREZISTA® is always taken with and at the same time as ritonavir (Norvir ®), in combination with other HIV medicines for the treatment of HIV infection in adults. PREZISTA® should also be taken with food. • The use of other medicines active against HIV in combination with PREZISTA®/ritonavir (Norvir ®) may increase your ability to fight HIV. Your healthcare professional will work with you to find the right combination of HIV medicines • It is important that you remain under the care of your healthcare professional during treatment with PREZISTA® PREZISTA® does not cure HIV infection or AIDS and you may continue to experience illnesses associated with HIV-1 infection, including opportunistic infections. You should remain under the care of a doctor when using PREZISTA.® Please read Important Safety Information below, and talk to your healthcare professional to learn if PREZISTA® is right for you.
IMPORTANT SAFETY INFORMATION What is the most important information I should know about PREZISTA®? • PREZISTA® can interact with other medicines and cause serious side effects. See “Who should not take PREZISTA®?” • PREZISTA® may cause liver problems. Some people taking PREZISTA,® together with Norvir ® (ritonavir), have developed liver problems which may be life-threatening. Your healthcare professional should do blood tests before and during your combination treatment with PREZISTA.® If you have chronic hepatitis B or C infection, your healthcare professional should check your blood tests more often because you have an increased chance of developing liver problems • Tell your healthcare professional if you have any of these signs and symptoms of liver problems: dark (tea-colored) urine, yellowing of your skin or whites of your eyes, pale-colored stools (bowel movements), nausea, vomiting, pain or tenderness on your right side below your ribs, or loss of appetite • PREZISTA® may cause a severe or life-threatening skin reaction or rash. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. You should call your healthcare professional immediately if you develop a rash. However, stop taking PREZISTA® and ritonavir combination treatment and call your healthcare professional immediately if you develop any skin changes with these symptoms: fever, tiredness, muscle or joint pain, blisters or skin lesions, mouth sores or ulcers, red or inflamed eyes, like “pink eye.” Rash occurred more often in patients taking PREZISTA® and raltegravir together than with either drug separately, but was generally mild Who should not take PREZISTA®? • Do not take PREZISTA® if you are taking the following medicines: alfuzosin (Uroxatral®), dihydroergotamine (D.H.E.45,® Embolex,® Migranal®), ergonovine, ergotamine (Cafergot,® Ergomar ®), methylergonovine, cisapride (Propulsid®), pimozide (Orap®), oral midazolam, triazolam (Halcion®), the herbal supplement St. John’s wort (Hypericum perforatum), lovastatin (Mevacor,® Altoprev,® Advicor ®), simvastatin (Zocor,® Simcor,® Vytorin®), rifampin (Rifadin,® Rifater,®
Rifamate,® Rimactane®), sildenafil (Revatio®) when used to treat pulmonary arterial hypertension, indinavir (Crixivan®), lopinavir/ ritonavir (Kaletra®), saquinavir (Invirase®), boceprevir (Victrelis™), or telaprevir (Incivek™) • Before taking PREZISTA,® tell your healthcare professional if you are taking sildenafil (Viagra,® Revatio®), vardenafil (Levitra,® Staxyn®), tadalafil (Cialis,® Adcirca®), atorvastatin (Lipitor®), rosuvastatin (Crestor®), pravastatin (Pravachol®), or colchicine (Colcrys,® Col-Probenecid®). Tell your healthcare professional if you are taking estrogen-based contraceptives (birth control). PREZISTA® might reduce the effectiveness of estrogen-based contraceptives. You must take additional precautions for birth control, such as condoms This is not a complete list of medicines. Be sure to tell your healthcare professional about all the medicines you are taking or plan to take, including prescription and nonprescription medicines, vitamins, and herbal supplements. What should I tell my doctor before I take PREZISTA®? • Before taking PREZISTA,® tell your healthcare professional if you have any medical conditions, including liver problems (including hepatitis B or C), allergy to sulfa medicines, diabetes, or hemophilia • Tell your healthcare professional if you are pregnant or planning to become pregnant, or are breastfeeding — The effects of PREZISTA® on pregnant women or their unborn babies are not known. You and your healthcare professional will need to decide if taking PREZISTA® is right for you — Do not breastfeed. It is not known if PREZISTA® can be passed to your baby in your breast milk and whether it could harm your baby. Also, mothers with HIV should not breastfeed because HIV can be passed to your baby in the breast milk What are the possible side effects of PREZISTA®? • High blood sugar, diabetes or worsening of diabetes, and increased bleeding in people with hemophilia have been reported in patients taking protease inhibitor medicines, including PREZISTA® • Changes in body fat have been seen in some patients taking HIV medicines, including PREZISTA.® The cause and long-term health effects of these conditions are not known at this time • Changes in your immune system can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden • The most common side effects related to taking PREZISTA® include diarrhea, nausea, rash, headache, stomach pain, and vomiting. This is not a complete list of all possible side effects. If you experience these or other side effects, talk to your healthcare professional. Do not stop taking PREZISTA® or any other medicines without first talking to your healthcare professional You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please refer to the ritonavir (Norvir®) Product Information (PI and PPI) for additional information on precautionary measures. Please read accompanying Patient Information for PREZISTA® and discuss any questions you have with your doctor.
28PRZDTC0288R8
PREZISTA® (darunavir) is a prescription medicine. It is one treatment option in the class of HIV (human immunodeficiency virus) medicines known as protease inhibitors.
ily
Once-Da
PREZISTA ^ EXPERIENCE
Discover the
®
Once-Daily PREZISTA® (darunavir) isn’t just an HIV treatment. It’s an HIV treatment experience as unique as you. That’s why you should ask your healthcare professional if the PREZISTA® Experience is right for you. Once-Daily PREZISTA® taken with ritonavir and in combination with other HIV medications can help lower your viral load and keep your HIV under control over the long term. In a clinical study* of almost 4 years (192 weeks), 7 out of 10 adults who had never taken HIV medications before maintained undetectable† viral loads with PREZISTA® plus ritonavir and Truvada.® Ask your healthcare professional about the PREZISTA® Experience. And be sure to visit DiscoverPREZISTA.com for tools and helpful information to find out if the PREZISTA® Experience might be right for you.
Please read the Important Safety Information and Patient Information on adjacent pages.
Snap a quick pic of our logo to show your doctor and get the conversation started. *A randomized open label Phase 3 trial comparing PREZISTA®/ritonavir 800/100 mg once daily (n=343) vs. Kaletra®/ritonavir 800/200 mg/day (n=346). †Undetectable was defined as a viral load of less than 50 copies per mL. Registered trademarks are the property of their respective owners.
Janssen Therapeutics, Division of Janssen Products, LP © Janssen Therapeutics, Division of Janssen Products, LP 2013 02/13 K28PRZ121037
IMPORTANT PATIENT INFORMATION PREZISTA (pre-ZIS-ta) (darunavir) Oral Suspension PREZISTA (pre-ZIS-ta) (darunavir) Tablets Read this Patient Information before you start taking PREZISTA and each time you get a refill. There may be new information. This information does not take the place of talking to your healthcare provider about your medical condition or your treatment. Also read the Patient Information leaflet for NORVIR® (ritonavir). What is the most important information I should know about PREZISTA? • PREZISTA can interact with other medicines and cause serious side effects. It is important to know the medicines that should not be taken with PREZISTA. See the section “Who should not take PREZISTA?” • PREZISTA may cause liver problems. Some people taking PREZISTA in combination with NORVIR® (ritonavir) have developed liver problems which may be life-threatening. Your healthcare provider should do blood tests before and during your combination treatment with PREZISTA. If you have chronic hepatitis B or C infection, your healthcare provider should check your blood tests more often because you have an increased chance of developing liver problems. • Tell your healthcare provider if you have any of the below signs and symptoms of liver problems. • Dark (tea colored) urine • yellowing of your skin or whites of your eyes • pale colored stools (bowel movements) • nausea • vomiting • pain or tenderness on your right side below your ribs • loss of appetite PREZISTA may cause severe or life-threatening skin reactions or rash. Sometimes these skin reactions and skin rashes can become severe and require treatment in a hospital. You should call your healthcare provider immediately if you develop a rash. However, stop taking PREZISTA and ritonavir combination treatment and call your healthcare provider immediately if you develop any skin changes with symptoms below: • fever • tiredness • muscle or joint pain • blisters or skin lesions • mouth sores or ulcers • red or inflamed eyes, like “pink eye” (conjunctivitis) Rash occurred more often in people taking PREZISTA and raltegravir together than with either drug separately, but was generally mild. See “What are the possible side effects of PREZISTA?” for more information about side effects. What is PREZISTA? PREZISTA is a prescription anti-HIV medicine used with ritonavir and other anti-HIV medicines to treat adults with human immunodeficiency virus (HIV-1) infection. PREZISTA is a type of anti-HIV medicine called a protease inhibitor. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). When used with other HIV medicines, PREZISTA may help to reduce the amount of HIV in your blood (called “viral load”). PREZISTA may also help to increase the number of white blood cells called CD4 (T) cell which help fight off other infections. Reducing the amount of HIV and increasing the CD4 (T) cell count may improve your immune system. This may reduce your risk of death or infections that can happen when your immune system is weak (opportunistic infections). PREZISTA does not cure HIV infection or AIDS and you may continue to experience illnesses associated with HIV-1 infection, including opportunistic infections. You should remain under the care of a doctor when using PREZISTA. Avoid doing things that can spread HIV-1 infection. • Do not share needles or other injection equipment. • Do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades.
• D o not have any kind of sex without protection. Always practice safe sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. Ask your healthcare provider if you have any questions on how to prevent passing HIV to other people. Who should not take PREZISTA? Do not take PREZISTA with any of the following medicines: • alfuzosin (Uroxatral®) • dihydroergotamine (D.H.E. 45®, Embolex®, Migranal®), ergonovine, ergotamine (Cafergot®, Ergomar®) methylergonovine • cisapride • pimozide (Orap®) • oral midazolam, triazolam (Halcion®) • the herbal supplement St. John’s Wort (Hypericum perforatum) • the cholesterol lowering medicines lovastatin (Mevacor®, Altoprev®, Advicor®) or simvastatin (Zocor®, Simcor®, Vytorin®) • rifampin (Rifadin®, Rifater®, Rifamate®, Rimactane®) • sildenafil (Revatio®) only when used for the treatment of pulmonary arterial hypertension. Serious problems can happen if you take any of these medicines with PREZISTA. What should I tell my doctor before I take PREZISTA? PREZISTA may not be right for you. Before taking PREZISTA, tell your healthcare provider if you: • have liver problems, including hepatitis B or hepatitis C • are allergic to sulfa medicines • have high blood sugar (diabetes) • have hemophilia • are pregnant or planning to become pregnant. It is not known if PREZISTA will harm your unborn baby. Pregnancy Registry: You and your healthcare provider will need to decide if taking PREZISTA is right for you. If you take PREZISTA while you are pregnant, talk to your healthcare provider about how you can be included in the Antiretroviral Pregnancy Registry. The purpose of the registry is follow the health of you and your baby. • are breastfeeding or plan to breastfeed. Do not breastfeed. We do not know if PREZISTA can be passed to your baby in your breast milk and whether it could harm your baby. Also, mothers with HIV-1 should not breastfeed because HIV-1 can be passed to the baby in the breast milk. Tell your healthcare provider about all the medicines you take including prescription and nonprescription medicines, vitamins, and herbal supplements. Using PREZISTA and certain other medicines may affect each other causing serious side effects. PREZISTA may affect the way other medicines work and other medicines may affect how PREZISTA works. Especially tell your healthcare provider if you take: • other medicine to treat HIV • estrogen-based contraceptives (birth control). PREZISTA might reduce the effectiveness of estrogen-based contraceptives. You must take additional precautions for birth control such as a condom. • medicine for your heart such as bepridil, lidocaine (Xylocaine Viscous®), quinidine (Nuedexta®), amiodarone (Pacerone®, Cardarone®), digoxin (Lanoxin®), flecainide (Tambocor®), propafenone (Rythmol®) • warfarin (Coumadin®, Jantoven®) • medicine for seizures such as carbamazepine (Carbatrol®, Equetro®, Tegretol®, Epitol®), phenobarbital, phenytoin (Dilantin®, Phenytek®) • medicine for depression such as trazadone and desipramine (Norpramin®) • clarithromycin (Prevpac®, Biaxin®) • medicine for fungal infections such as ketoconazole (Nizoral®), itraconazole (Sporanox®, Onmel®), voriconazole (VFend®) • colchicine (Colcrys®, Col-Probenecid®) • rifabutin (Mycobutin®) • medicine used to treat blood pressure, a heart attack, heart failure, or to lower pressure in the eye such as metoprolol (Lopressor®, Toprol-XL®), timolol (Cosopt®, Betimol®, Timoptic®, Isatolol®, Combigan®) • midazolam administered by injection • medicine for heart disease such as felodipine (Plendil®), nifedipine (Procardia®, Adalat CC®, Afeditab CR®), nicardipine (Cardene®) • steroids such as dexamethasone, fluticasone (Advair Diskus®, Veramyst®, Flovent®, Flonase®) • bosentan (Tracleer®) • medicine to treat chronic hepatitis C such as boceprevir (VictrelisTM), telaprevir (IncivekTM)
IMPORTANT PATIENT INFORMATION • m edicine for cholesterol such as pravastatin (Pravachol®), atorvastatin (Lipitor®), rosuvastatin (Crestor®) • medicine to prevent organ transplant failure such as cyclosporine (Gengraf®, Sandimmune®, Neoral®), tacrolimus (Prograf®), sirolimus (Rapamune®) • salmeterol (Advair®, Serevent®) • medicine for narcotic withdrawal such as methadone (Methadose®, Dolophine Hydrochloride), buprenorphine (Butrans®, Buprenex®, Subutex®), buprenorphine/naloxone (Suboxone®) • medicine to treat schizophrenia such as risperidone (Risperdal®), thioridazine • medicine to treat erectile dysfunction or pulmonary hypertension such as sildenafil (Viagra®, Revatio®), vardenafil (Levitra®, Staxyn®), tadalafil (Cialis®, Adcirca®) • medicine to treat anxiety, depression or panic disorder such as sertraline (Zoloft®), paroxetine (Paxil®, Pexeva®) • medicine to treat malaria such as artemether/lumefantrine (Coartem®) This is not a complete list of medicines that you should tell your healthcare provider that you are taking. Ask your healthcare provider or pharmacist if you are not sure if your medicine is one that is listed above. Know the medicines you take. Keep a list of them to show your doctor or pharmacist when you get a new medicine. Do not start any new medicines while you are taking PREZISTA without first talking with your healthcare provider. How should I take PREZISTA? • Take PREZISTA every day exactly as prescribed by your healthcare provider. • You must take ritonavir (NORVIR®) at the same time as PREZISTA. • Do not change your dose of PREZISTA or stop treatment without talking to your healthcare provider first. • Take PREZISTA and ritonavir (NORVIR®) with food. • Swallow PREZISTA tablets whole with a drink. If you have difficulty swallowing PREZISTA tablets, PREZISTA oral suspension is also available. Your health care provider will help decide whether PREZISTA tablets or oral suspension is right for you. • PREZISTA oral suspension should be given with the supplied oral dosing syringe. Shake the suspension well before each use. See the Instructions for Use that come with PREZISTA oral suspension for information about the right way to prepare and take a dose. • If your prescribed dose of PREZISTA oral suspension is more than 6 mL, you will need to divide the dose. Follow the instructions given to you by your healthcare provider or pharmacist about how to divide the dose. Ask your healthcare provider or pharmacist if you are not sure. • If you take too much PREZISTA, call your healthcare provider or go to the nearest hospital emergency room right away. What should I do if I miss a dose? People who take PREZISTA one time a day: • If you miss a dose of PREZISTA by less than 12 hours, take your missed dose of PREZISTA right away. Then take your next dose of PREZISTA at your regularly scheduled time. • If you miss a dose of PREZISTA by more than 12 hours, wait and then take the next dose of PREZISTA at your regularly scheduled time. People who take PREZISTA two times a day • If you miss a dose of PREZISTA by less than 6 hours, take your missed dose of PREZISTA right away. Then take your next dose of PREZISTA at your regularly scheduled time. • If you miss a dose of PREZISTA by more than 6 hours, wait and then take the next dose of PREZISTA at your regularly scheduled time. If a dose of PREZISTA is skipped, do not double the next dose. Do not take more or less than your prescribed dose of PREZISTA at any one time. What are the possible side effects of PREZISTA? PREZISTA can cause side effects including: • See “What is the most important information I should know about PREZISTA?” • D iabetes and high blood sugar (hyperglycemia). Some people who take protease inhibitors including PREZISTA can get high blood sugar, develop diabetes, or your diabetes can get worse. Tell your healthcare provider if you notice an increase in thirst or urinate often while taking PREZISTA. • Changes in body fat. These changes can happen in people who take antiretroviral therapy. The changes may include an increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the back, chest, and stomach area. Loss of fat from the legs, arms, and face may also happen. The exact cause and longterm health effects of these conditions are not known.
• Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Call your healthcare provider right away if you start having new symptoms after starting your HIV medicine. • Increased bleeding for hemophiliacs. Some people with hemophilia have increased bleeding with protease inhibitors including PREZISTA. The most common side effects of PREZISTA include: • diarrhea • headache • nausea • abdominal pain • rash • vomiting Tell your healthcare provider if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of PREZISTA. For more information, ask your health care provider. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088. How should I store PREZISTA? • Store PREZISTA oral suspension and tablets at room temperature [77°F (25°C)]. • Do not refrigerate or freeze PREZISTA oral suspension. • Keep PREZISTA away from high heat. • PREZISTA oral suspension should be stored in the original container. Keep PREZISTA and all medicines out of the reach of children. General information about PREZISTA Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use PREZISTA for a condition for which it was not prescribed. Do not give PREZISTA to other people even if they have the same condition you have. It may harm them. This leaflet summarizes the most important information about PREZISTA. If you would like more information, talk to your healthcare provider. You can ask your healthcare provider or pharmacist for information about PREZISTA that is written for health professionals. For more information, call 1-800-526-7736. What are the ingredients in PREZISTA? Active ingredient: darunavir Inactive ingredients: PREZISTA Oral Suspension: hydroxypropyl cellulose, microcrystalline cellulose, sodium carboxymethylcellulose, methylparaben sodium, citric acid monohydrate, sucralose, masking flavor, strawberry cream flavor, hydrochloric acid (for pH adjustment), purified water. PREZISTA 75 mg and 150 mg Tablets: colloidal silicon dioxide, crospovidone, magnesium stearate, microcrystalline cellulose. The film coating contains: OPADRY® White (polyethylene glycol 3350, polyvinyl alcohol-partially hydrolyzed, talc, titanium dioxide). PREZISTA 400 mg and 600 mg Tablets: colloidal silicon dioxide, crospovidone, magnesium stearate, microcrystalline cellulose. The film coating contains: OPADRY® Orange (FD&C Yellow No. 6, polyethylene glycol 3350, polyvinyl alcohol-partially hydrolyzed, talc, titanium dioxide). PREZISTA 800 mg Tablets: colloidal silicon dioxide, crospovidone, magnesium stearate, microcrystalline cellulose, hypromellose. The film coating contains: OPADRY® Dark Red (iron oxide red, polyethylene glycol 3350, polyvinyl alcohol-partially hydrolyzed, talc, titanium dioxide). This Patient Information has been approved by the U.S Food and Drug Administration. Manufactured by: PREZISTA Oral Suspension PREZISTA Tablets Janssen Pharmaceutica, N.V. Janssen Ortho LLC, Beerse, Belgium Gurabo, PR 00778 Manufactured for: Janssen Therapeutics, Division of Janssen Products, LP, Titusville NJ 08560 Revised: April 2013 NORVIR® is a registered trademark of its respective owner. PREZISTA® is a registered trademark of Janssen Pharmaceuticals © Janssen Pharmaceuticals, Inc. 2006 991772P
Mondo unveils his design for a day with hiv
T
his print was designed by fashion designer (winner of Project Runway All Stars) and HIV advocate (spokesperson for the national HIV education campaign I Design) Mondo Guerra exclusively for Positively Aware’s A Day with HIV issue. Drawing inspiration from the annual photo project and reflecting upon his life, Mondo designed a print that illustrates his typical “Day with HIV” as a
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fashion designer and a person living with HIV. As an artist, he says the constant challenge is to create something that is recognizable but also fresh. In addition to using his signature black and white geometric shapes, Mondo also incorporated the universally-known red HIV/AIDS ribbon. The result is a plaid print that represents balance, responsibility and reflection—important aspects of Mondo’s life living with HIV.
A DAY WITH HIV
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n September 21st, 2013, people in 11 countries on five continents (see map) took their best shot against HIV. Whether they were HIV-positive or negative, they photographed a moment of their day and shared their lives for A Day with HIV, Positively Aware’s anti-stigma campaign. View the full 2013 gallery at adaywithhiv.com.
10:30 AM: Phoenix, AZ.
7:53 AM: Ohio. Michael
makes a statement about the cost of staying undetectable.
8:15 AM: Chicago. Jim Carey, HIV-positive for eight years, starts the day off with a little “me time” by enjoying a long shower and steam at home before a day of chores and errands.
Marco Zamora: Taken just before my one-hour yoga workout. Daily exercise and good eating habits have helped me achieve my goal of conquering HIV. I want to live a long, healthy life to show that this disease cannot eradicate us.
10:59 AM: Philadelphia, PA.
9:30 AM: Hobe Sound, FL. Marissa Baker: Today we decided that we were no longer
hiding. No stigma, just love. Brothers and sisters. Another beautiful Saturday morning enjoying one another. There’s nothing better than family.
Rev. Andrena Ingram: “Each Saturday, St. Michael’s Lutheran Church has a Community Meal. I spent A Day with HIV praying, serving, encountering, and ‘fellowshipping’ people in the community. I made a new friend! She plastered me with Dora the Explorer stickers, ‘for being nice to her,’ she said.”
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A DAY WITH HIV
12:35 PM: New York City. A group of long-term HIV/AIDS survivors
meet for their regular brunch (left to right: Jeffrey Mooney, Lee Raines, Jim Albaugh, Scott Jordan, Jason Osher, Steve Schalchlin).
12:00 PM: St Kilda, Victoria, Australia. Mark Emmet White: “This is a photo of me in my backyard taken by my best friend. Regardless of what day it is, my red wrist band is a permanent fixture on my left wrist. Every day is A Day with HIV for me—and I am proud to make that known in my everyday life.”
12:46 PM: Sao Paulo, Brazil.
Maria: Four pills a day.
12:15 PM: Eugene, OR. Bob Skinner:
12:45 PM: Northbend, OH. Theresa Kenney: “I am a
mother, daughter, sister, and grandmother putting a face to HIV in hopes of bringing awareness, and changing stigma for those of us living with HIV. Testing can save your life.” 38
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“This picture was taken at the Eugene Farmers Market. I am very fortunate to be able to leave all the challenges of living with HIV/AIDS behind me for at least six hours. When my customers come to buy cheese, we frequently start up a talk about HIV/AIDS, and this gives me the opportunity to not only do some outreach but also to talk about testing and how important it is to know your status. Goat cheese and HIV, what a combination. But it works.”
1:07 PM: Douglas, MI. Dave Watt: “Mr. Friendly turns five years old today. Celebrating with cake and no spankings... yet!” ;+)
1:30 PM: Philadelphia, PA.
Garth Terrelong: Making burgers for the church picnic!
2:30 PM: London, UK. Garry Brough (bottom row, second from left): “After appearing on last year’s cover in a solo shot, this year we have members of the community forums from myHIV.co.uk, while attending the Positively UK Conference on Activism and Engagement with over 100 other PLHIV. Most of those in the picture are part of our new online peer support volunteer team, who share their experiences with other members, especially those who need reassurance and information from people who understand.”
2:00 PM: Stone Ridge, NY.
1:45 PM: Kingston, Jamaica.
Kathleen Callaghan: “Living positively since 1992, after years of doctors telling me my health complaints were stress-related. Blessed with a supportive family and friends. Life is indeed very good. I was blessed to live to see better medications and, more important, I was able to see my beautiful daughters and wonderful grandchildren grow up and make me oh so proud.”
Damone Thomas: This picture depicts what People Living with HIV (PLHIV) in Jamaica encounter. They are not able to show their face and tell others their status outside of their patient care provider or support groups. So, A Day with HIV in Jamaica is a day of SILENCE, FEAR, STIGMA, and DISCRIMINATION.
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A DAY WITH HIV
3:07 PM: Minneapolis, MN. 2:45 PM: High Point, NC.
Chris Whitsett: “This is a photo of me and the meds that I have to take every day to remain healthy and undetectable.” #undetectable #pride
3:00 PM: Cologne, Germany. Markus Stein: “HIV has a cure:
EDUCATION!”
3:00 PM: Nashville, TN.
Josh Robbins, 30, HIV-positive since 2012, updating his blog, imstilljosh.com. The site features the first ever Digital Encouragement Wall for those who are newly diagnosed with HIV so that they can receive encouragement to keep living. 40
3:52 PM. David Cisneros: “I found out I was
positive three months ago. It’s kinda funny that I found out about this campaign on my first happy day in a long time. Family is so important. It’s been a good day.”
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Chef Robert Morris III: This smile was a long time coming, to be able to smile about life. I live my life for what’s now, I don’t let HIV live my life for me. We got this, you are not alone.
4:13 PM: San Francisco. Jonathon Little: “Doing much, much better than I was initially. I’m on a standard ARV regimen now. My CD4 count still isn’t stellar but, what I have is working well. My viral load is undetectable. I moved back out to California a few weeks ago to try a reboot on my life. I’ve already seen my new doc at Stanford and am hoping to take part in some of the spectacular clinical trials going on.”
4:26 PM. Maralyn: “I am a 58-year-old mother of three, grandmother of eight, and a widow. I have AIDS, but AIDS doesn’t have me. I am an activist and peer mentor. I was diagnosed in Belize and I fight every day against stigma.”
4:45 PM Chicago. James Hallberg: “The
day I no longer feared being HIV-positive was the day I met my husband and learned what it was to be loved with no fear by someone HIV-negative for just being me.”
4:30 PM: Chexbres, Switzerland.
5:00 PM: Ankeny, IA. (submitted by Brian
Paul Koethe: “Riding my bicycle 375 miles across Switzerland to support Compass Services at MetroHealth, a program that guides people living with HIV/AIDS along the path to wellness.”
Walker) David Walker: “My daddy says I’m more of a Super Hero than Superman could ever be! HIV won’t stop me from growing into the man I am meant to be! Still undetectable and going strong!”
4:50 PM: Chicago. Mario Camacho: “Volunteering on Saturdays at the Center on Halsted’s Cyber Center. This photo is very special to me because I am showing my love for volunteering and giving back. It makes me feel great. This is my best shot at HIV.”
5:45 PM: Chicago. Kyle: “I’m lifting my sunglasses and looking toward the sunlight to show an embrace of the light of life and also some cool attitude and confidence. I hadn’t noticed one of your slogans is ‘seize the day,’ yet that’s the gist of my intention.”
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A DAY WITH HIV
7:00 PM: Moab, UT. Laurie Priddy: “We hiked all over Moab. This is
the third time I was able to have my niece with me for a month out of the summer. Living with HIV for 25 years, I have had the beautiful experience of watching and experiencing my family go from fear of me to acceptance through education, to unconditional love.” 7:45 PM: San Francisco.
Ralfka Gonzalez: “Attending a gay Latino party at the gay and lesbian center on Market Street—letting others know how racism and fear keep people living with HIV from living happy lives. I am an artist activist. Latinos need to fight to be heard by the people who make laws about our health.”
5:45 PM: South Gate, CA. Kissing her baby, Laura A. knows that HIV will not be a concern for him...one day.
9:00 PM: Highlands Ranch, CO. Betsy Samuel: After a fun Saturday of
activities with our son, Carter, it is nice to spend time together just putting our feet up and watching TV. Betsy has been HIV-positive for 21 years; Joe and son Carter are HIV-negative! 42
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11:00 PM: Maisons Laffitte, France. Grégory Costa: “It was the birthday of a friend, and we were dancing all night. I climbed a wall, took a guitar, and played like a crazy man!”
One issue, four covers This issue of Positively Aware features four different covers, each one a snapshot taken on A Day with HIV
POSITIVELY AWARE
POSITIVELY AWARE
POSITIVELY AWARE
POSITIVELY AWARE
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N ov e m b e r + D ec e m b e r 2 0 1 3
N ov e m b e r + D ec e m b e r 2 0 1 3
N ov e m b e r + D ec e m b e r 2 0 1 3
11:00 AM: AtlAntA
Amy Levy and family: “we are an adoptive family and some of our family members are hiV-positive. we choose to live an openly disclosed life, living without shame or fear. we hope to educate others with love and kindness, and hope to receive love, kindness, and acceptance in return.”
11:35 AM: outside ChArlottesville, vA
1:15 pM: vAlley streAM, ny
Raymond with daughter Aliyah: “Picking apples has been a family tradition. Picking them together on A Day with hiV is our new tradition.”
Nancy Duncan, hiV-positive since 1985: “i spend my days educating, advocating and mentoring for the cause. i’ll continue this mission until i go to be with God—or better yet, until there is a cure! i am grateful for my family, friends, my son, and my amazing, supportive partner.”
A DAy with hiV
A DAy with hiV
10:45 AM: huntington BeACh, CA
Alexander Smith: “Morning yoga on a stand up paddle board. i find balance, strength, and flexibility in the bridge pose. And practice the same principles in life, as i pose with hiV/AiDS.”
on septeMBer 21st, 2013, people in nine countries on four continents
took their best shot against hiV. they were different people from different places, united by the fact that they took their photo on a day called
A DAy with hiV
A DAy with hiV
10:45 AM:
11:00 AM:
11:35 AM:
1:15 PM:
Huntington Beach, CA.
Atlanta.
near Charlottesville, VA.
Valley Stream, NY.
Alexander Smith: “Morning yoga on a stand up paddle board. I find balance, strength, and flexibility in the bridge pose. And practice the same principles in life, as I pose with HIV/AIDS.”
Amy Levy and family: “We are an adoptive family and some of our family members are HIV-positive. We choose to live an openly disclosed life, living without shame or fear. We hope to educate others with love and kindness, and hope to receive love, kindness, and acceptance in return.”
Raymond with daughter Aliyah: “Picking apples has been a family tradition. Picking them together on A Day with HIV is our new tradition.”
Nancy Duncan, HIV-positive since 1985: “I spend my days educating, advocating and mentoring for the cause. I’ll continue this mission until I go to be with God—or better yet, until there is a cure! I am grateful for my family, friends, my son, and my amazing, supportive partner.”
Meet the judges A designer, a documentary filmmaker, and a photographer helped select our four covers Known for revealing his HIV status while a contestant on TV’s Project Runway, Mondo Guerra has emerged as a designer in his own right. His bold designs have captured the eye of the fashion world, while his work as an HIV/AIDS advocate has raised awareness worldwide.
Michigan native David France
is the producer/ director of the Oscar-nominated documentary How to Survive a Plague. A journalist-turnedactivist during the early days of the AIDS epidemic in New York City, he was present for much of the activism of the 1980s. Besides his success in film, he is also an author of three books and will soon be working on a TV miniseries based on Plague.
Since being diagnosed with HIV 17 years ago, Duane Cramer has become a tireless advocate for HIV awareness and education. Well known for his photographybased HIV awareness visuals and his efforts particularly in the African-American community, Duane has been involved with the development and creation of several HIV initiatives.
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Duane and Mondo:
Two artists, one mission HIV-positive, practicing their art, and fighting stigma by advocating for others By Jeff Berry
I
t’s now an iconic moment in television history, when during season eight of the hit show Project Runway contestant Mondo Guerra reveals to judge Nina Garcia and the entire world the story and inspiration behind his acclaimed positivity print—that he is HIV-positive, and has been for 10 years. It seems so long ago now, but his memory of it is quite vivid, and still brings up a lot of emotion for Mondo.
“You know, I wish I knew what the story was,” Nina had said after seeing the pants he designed using the print made up of black, yellow, and magenta plus signs. Although Mondo says he hadn’t planned on “coming out” about his status, he says that moment was the right moment. “It was about being out and sharing my story, and honoring what I did as a creative person. For a long time I thought art was my only true identity. I was creating and in this competition and doing well, but if I lied about it—if I couldn’t talk about what inspired that print— I would not only be defeating myself as a creative person but also as an individual.” Raised Catholic in a close-knit MexicanAmerican family, Mondo says he was always creative, starting with painting watercolors when he was just four years old, then drawing, playing the piano, and 44
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even dabbling in theater. “I always wanted to be one of the cool kids who had the cool clothes and made funny comments or who would act out to get attention. I really delved into all the arts and I got recognition for that, and growing up I loved it, but I wanted to be normal, I guess. Sometimes I felt like art was the only reason why I was approached. So I was confused about why I could do one thing, but I couldn’t be recognized for who I was. It was always a struggle for me.” Once he was diagnosed with HIV, he felt like all those aspirations, dreams, and goals disappeared and would never be realized. “That really crippled me in a lot of ways. I was crippled because I was in denial and really let HIV define who I was.” It came to a point where nothing creative was making him happy, and he knew
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that something was “very wrong,” but Mondo says he really hit rock bottom when he was in the hospital with pneumonia on Christmas day the year before he was selected to appear on the show. With his mother by his side in the hospital, he was still unable to share the whole story with her about his status and be completely truthful. That was the moment when he knew that he had to start working on his goals, not only in terms of his health, but also mentally and creatively. “That was it. I really felt like I was letting HIV kill me. And I couldn’t let this disease take everything away from me.”
D
uane Cramer, a freelance, award-winning photographer whose focus is portraiture, has photographed hundreds of dignitaries, celebrities, and
A MESSAGE BY design: Duane Cramer (left) and Mondo Guerra share the stage at this year’s U.S. Conference on AIDS in New Orleans.
Photo: CHRIS KNIGHT
everyday individuals. His love of photography started as a young child, even before his father gave him his first camera in high school. Growing up as a young African American man and surrounded by images of strength and beauty in his family, those images and people were a continual source of inspiration. “I grew up in a very artistic family. Within the family there were painters, photographers, singers, and dancers, so I had the opportunity to be around these people. I would go to peoples’ homes and in my own home we had these really great portraits all over the place,” say Cramer. “I really think it trained my eye into photography and it made me realize that there was so much power and strength, and the ability to uplift and remember people, through photography.”
Cramer tested HIV-positive in 1996 after returning from the display of the National AIDS Memorial Quilt in Washington, D.C., where his father’s quilt panel had also been on display. His father, Joe J. Cramer, Jr., PhD, an accomplished academician and professor at Howard University, had been sick on and off for quite some time in the ’80s. “He kept telling us that they did not know what was wrong with him. Finally what came back was that he had HIV. Then shortly thereafter he passed away. It was a very difficult time for my sisters and me because all of the news focused around gay white men in the newspapers and on TV, and our father was not a gay white man. He was a black man married to a beautiful woman, with three children. So we really did not want to associate ourselves with a lot of the negativity that we had seen in the media, and really had a lot of shame
and guilt about it. So over the years we told people that he had died of cancer and kept it essentially a secret.” When Cramer arrived back home from D.C., he went for the routine HIV test that he took every three to six months, and which before had always come back negative. This time there was a message from the doctor saying that he wanted to talk to him. “I never received a call from a doctor and a message like that, so I was pretty sure that the news was going to be that I was positive. And that’s the message that the doctor told me that day. It was just a few days before my birthday.” It wasn’t until a few years later when Cramer was granted a leave of absence from his job to work with the NAMES Project National High School Quilt Program taking the quilt to different high schools
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around the country, that he decided to finally “come out.” “When I was awarded that leave, they were going to put out a press release. I thought to myself, ‘Well, should I tell them I’m HIV-positive or not?’ One of my close friends that I shared my status with asked me the question, ‘If it’s something that’s going to help you do your work, would you do it?’ And the answer was yes. So I decided to come out and be open about my HIV status.” For both of these artists, coming out about their HIV status has freed them to be more creative and inspired in their work, and to use art as a way to help raise awareness about HIV and AIDS. After Mondo came out during the taping of the show, backstage his fellow cast members were crying, hugging him, and being extremely supportive, and Mondo kept saying over and over that he was finally free. But he says although he was relieved, it was also bittersweet for him because he started thinking about the possible backlash and repercussions from his new revelation. A few months later and less than a week before the episode aired, he sat down with his family at dinner and said, “I have something to tell you. I’m HIV-positive, but I have to tell you that I’m healthy, and happier than I’ve ever been in my life.” His mom’s response was, “Well, I know.” Mondo understood why she would know, having already been in the hospital several times. “I mean, she’s my mother, for Pete’s sake.” She also told him that he should offer courage and support to other people in the same situation, so that they would have the opportunity to have that same kind of experience. “I got hundreds, thousands of emails from so many people that related to the story, and it was not about being HIVnegative or HIV-positive,” says Mondo. “It was really about honoring your truth and coming to terms with your experience and how it affects you, but also being able to let go and talk about it so you could move on with your life.” The most powerful story he says he received was from one of his friends, who after seeing the episode, wrote him an email and said, “There’s something that I really never told anybody. Both of my parents have been living with HIV for years. We don’t talk about it.” “It really opened my eyes,” says Mondo. 46
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“It’s really exciting to be focusing my energies on getting other HIV-positive or -negative people to stay healthy, and on reducing stigma.” —DUANE CRAMER “It helped me understand how much HIV affects so many people. It has the potential to infect anybody, but it affects everybody, and me talking about it really encouraged me to create the conversation.”
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oth Guerra and Cramer have joined with Merck’s Project IDesign to encourage other people living with HIV to have these kinds of open and frank discussions with their doctors about their daily lives so that they can work together to lay out a treatment plan that’s best suited for them. Cramer, who has done work with the CDC’s Testing Makes us Stronger campaign, as well as the Black AIDS Institute and Greater than AIDS, says that one of his personal goals is to reach out to more people of color in general and African Americans in particular, as they continue to be the groups most disproportionately affected by HIV. “It’s really exciting to be focusing my energies on getting other HIV-positive or -negative people to stay healthy, and on reducing stigma,” says Cramer. “That’s what motivates me to continue to be an activist around all of this, because there’s a lot of work that needs to be done.” Cramer says that creating art and sharing that art is really what’s most important to him and that he’s just happy to be able to do it and educate, and sometimes entertain people in the process. “I think the key thing about my photography is that I really love showcasing the identity of each person. So the focus of my photography is portraiture through the elements of the features and personality of the individual in their own unique way, to really kind of capture them at their best. “It’s really the process, because quite frankly, the camera is just a tool. I’m really about people. I love connecting with
people. I love every interaction. I really want to make every interaction with every person the best that it can be. So the time I share photographing a subject is really a recording of that time. “I can’t create a masterpiece photograph by myself,” continues Cramer. “I have to create it with someone else, because I’m a portraitist and so I work with other people. It’s always a collaboration between the subject and the photographer.” In the same way, he wants to let others know that we’re all in this work together. “It’s important for us to continue to be victors and not victims, and to have a positive outlook,” says Cramer. “I believe that we will all see an end to this and we will be able to celebrate. That will be a victorious day, and I hope that day is soon.” Guerra says that he’s working on his creative process, and it keeps evolving. “I think every time that you finish something, you want to do something better. Maybe that’s the process or maybe that’s the end result. For me, I always find myself going to negative, dark places to create something beautiful.” He says that he doesn’t want to have to go to that place all the time because he’s not a very good person to be around during that period, and he stresses out, but he’s working on that. “I’m such a visual person, I keep it all in my head. I can remember every single idea that I’ve ever had. When I’m ready to sit down, I can just pump it out because I have been thinking, ‘the length of the dress is going to be like this or this way.’ I think about structure. I think about color. I think about texture. So when I’m ready to produce it, I’m really able to knock it out. I really like the idea of having an organic process. I know a lot of people say organic process but … I really feel like process is very personal. That’s another reason why I was so afraid to go on to the show because
Duane’s subjects (opposite page, left to right from top):
Maria Grazia Cucinotta, Phill Wilson, Sheryl Lee Ralph, Julian Bond, Cornelius Baker, Iyanla Vanzant, and former San Francisco mayor Willie L. Brown, Jr.
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Through the Eye Of DUANE CRAMER
not only am I exposing myself, but I’m also exposing my process. For a lot of creative people, their process is the only sacred thing in their life, they’re kind of married to it. It’s scary to expose that.” The advice he offers to aspiring artists is the same he would give to someone newly diagnosed. “I would say stay true to who you are…look to your past, look to your now, look to your future, because that story has power even if you don’t think it has power, it means something special to you. You’ve lived this life. This is your story.”
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verybody has the ability to approach his or her day in a creative way, says Mondo. Whether you’re a banker, writer, or hair stylist, you find a way to enjoy your day by applying happiness to your process. “I think creativity can be owned by anybody. The crossover for me has been really major, coming from the show, because I am able to be recognized as a fashion designer but also as an HIV advocate. I never knew that being able to talk about HIV was going to make it come full circle.” Whenever he considers taking on a new project or collaboration, he always looks at a contract with the prospect of donating a portion of proceeds to a worthwhile organization. “I’m really trying to have that crossover of fashion and advocacy, because I think that’s going to be my legacy, a fashion designer who was an HIV advocate. I think I’ve been given the gift to be able to create beautiful things and I want everybody to experience beautiful things. Some people might not have the chance if they don’t have the resources to continue to go on with their life.” Mondo Guerra will be debuting his own “mini” clothing line in mid-November, as well as an eyewear collection, just in time for the holidays. Look for them on his website: mondoguerra.com.
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Photo:
as board member emeritus for the NAMES Project Foundation – AIDS Memorial Quilt, and is currently working on a project documenting historical African American images, as well as an upcoming book, “The Importance of Being Human,” with Nigel De Juan Hatton; go to duanecramer.com.
Photo: CHRIS KNIGHT
Duane Cramer has previously served
I am a husband, an Olympic gold medalist, and an actor. And I am living with HIV. TM
Greg Louganis (left) has lived with HIV since 1988.
Get the facts. Get tested. Get involved. www.cdc.gov/ActAgainstAIDS
Read THese
The stories, biographies, and observations of HIV-positive people and those who care for them Compiled by Carrie Foote
A
professor of sociology at Indiana University-Indianapolis, Carrie Foote has also been living with HIV for over 25 years. This is an abridged version of a list Foote compiled for her students during a course she teaches called “AIDS and Society.” Resources she used include the International Rectal Microbicides Advocates (IRMA) listserv, the Sociologists AIDS Network listserv, and Amazon.com. For the complete reading list, go to positivelyaware. com/readthese. BLACK MEN
Dangerous Intimacy: Ten African American Men with HIV, Christopher Coleman, Christopher Brooks (2009) Gary in Your Pocket: Stories and Notebooks of Gary Fisher, Gary Fisher and Eve Kosofsky Sedgwick (1996) BLACK WOMEN & GIRLS
AIDS Memoir: Journals of an HIV-Positive Mother, Catherine Wyatt-Morley (1997) You Get Past the Tears: A Memoir of Love and Survival, Patricia Broadbent (2002) The Naked Truth: Young, Beautiful, and (HIV) Positive, Courtney Martin, Marvelyn Brown (2008) Living Inside My Skin of Silence—One 50
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Woman’s Struggle with HIV, Monique Howell (2012) From the Crack House to the White House: Turning Obstacles into Opportunities, Denise Stokes (2012) The Politics of Respectability, Rae LewisThornton (2012) CELEBRITIES
My Life, Earvin Magic Johnson (1993) Days of Grace, Arthur Ashe (1993) Freddy Mercury, Peter Free Stone (2001) Breaking the Surface, Eric Marcus, Greg Louganis (2006) Pedro and Me: Friendship, Loss and What I Learned, Judd Winick (2009) Love Is the Cure: On Life, Loss, and the End of AIDS, Elton John (2012) Behind the Candelabra: My Life with
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Liberace, Scott Thorson, Alex Thorleifson (2013) GAY MEN
Borrowed Time: An AIDS Memoir, Paul Monette (1988) Mortal Embrace, Emmanuel Dreuilhe (1989) Close to the Knives: A Memoir of Disintegration, David Wojnarowicz (1991) Becoming a Man: Half a Life Story, Paul Monette and Kathryn Harrison (1992) Last Watch of the Night: Essays Too Personal and Otherwise, Paul Monette (1994) Queer and Loathing: Rants and Raves of a Raging AIDS Clone, David Feinberg (1994) Autopornography: A Memoir of Life in the Lust Lane, Scott O’Hara (1997) Reports from the Holocaust: The Making of an AIDS Activist, Larry Kramer (1998) The Farewell Symphony, Edmund White (1998) Hurry-Up Song: A Memoir of Losing My Brother, Clifford Chase (1999) Stitching a Revolution, Cleve Jones (2000) A Sister’s Tale: A Family Memoir, Emma Dally (2001)
Stations: An AIDS Memoir, Winfried Weiss (2001) Eighty-Sixed, David B. Feinberg (2002) Stayin’ Alive: The Innovation of Safe Sex, Richard Berkowitz (2003) My Undoing: Love in the Thick of Sex, Drugs, Pornography, and Prostitution, Aiden Shaw (2006) A Place Like This: A Memoir, Mark S. King (2007) Snippets from the Trenches: A Mother’s AIDS Memoir, Freda Wagman (2007) Delicate Courage: An Exquisite Journey of Love, Death, and Eternal Communication, Jim Geary (2010) Living Beyond Rainbows, David Marty (2010) Slaves to the Rhythm: A Love Story, Terry Connell (2010) Gone Today, Here Tomorrow, A Memoir, Randall Neece (2012) Body Counts: A Memoir of Politics, Sex, AIDS and Survival, Sean Strub (2014) HEMOPHILIACS
Jay Joyle (1988) Ryan White: My Own Story, Ryan White (1992) Weeding Out the Tears: A Mother’s Story of Love, Loss and Renewal, Jeanne White (1997) My Pet Virus: The True Story of a Rebel without a Cure, Shawn Decker (2006) Survivor: One Man’s Battle with HIV, Hemophilia, and Hepatitis C, Vaughn Ripley (2010) A Song in the Night, A Memoir of Resilience, Bob Massie (2012) Bleeder, Shelby Smoak (2013)
SUBSTANCE ABUSE & MENTAL HEALTH
Before I Die…: A Biography of a Woman Living with HIV, Tommy Ricks (2005) Crooked Road Straight: The Awakening of AIDS Activist Linda Jordan, Tina A. Brown (2007) Holding Breath: A Memoir of AIDS Wildfire Days, Nancy Bevilaqua (2012) Living to Tell: Confessions of an Alcoholic, Schizophrenic, Sexually Traumatized, Anxious, HIV-Infected Man, Walter Kathan (2010) WOMEN AND GIRLS (U.S. & Australia)
HIV SCIENTISTS
Virus Hunting: AIDS, Cancer, & The Human Retrovirus: A Story of Scientific Discovery, Robert C. Gallo (1993) Virus: The Co-Discoverer of HIV Tracks Its Rampage and Charts the Future, Luc Montagnier (2008) No Time to Lose: A Life in Pursuit of Deadly Viruses, Peter Piot (2012)
Mark: How a Boy’s Courage in Facing AIDS Inspired a Town and the Town’s Compassion Lit Up a Nation,
Sleep With the Angels, Mary Fisher (1994) My Name is Mary: A Memoir and I’ll Not Go Quietly, Mary Fisher (1995) Blood Ties: The Stories of Five Positive Women, Salli Trathen (2003) A Burden of Silence, Nancy A. Draper (2004) Messenger: A Self Portrait, Mary Fisher (2012) Po-Boy Contraband: From Diagnosis Back to Life, Patrice Melnick (2012) I Have Something to Tell You: A Memoir, Regan Hofmann (2013) Surviving HIV: Growing Up a Secret and Being Positive, Jamie Gentille (2013)
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|
Ask the HIV specialist
John D. Kriesel, MD
An eye out for MS
To find an HIV specialist™
near you go to
aahivm.org and enter your ZIP code in the Referral Link box.
I
am a 24-year-old positive man. I was diagnosed in December of 2009. Since January of 2010, I have been on meds and kept an undetectable viral load and a CD4 count of 900–1200. I am currently taking Stribild, which I started in January of 2013. Before that, I was on Reyataz, Truvada, and Norvir.
Recently I have been having trouble with my eyesight. After going to several doctors and getting referrals, etc., I was made aware that I have demyelination of the optic nerve similar to MS. The radiologist’s report states that in non-immunodeficient patients, MS produces similar symptoms. Have you ever heard of an otherwise healthy person suffering from this? I was assured that there is no opportunistic infection and that there is no explanation as to why this is happening. I have been referred to a neurologist specializing in MS—however, I wanted to get the opinion of an HIV specialist as well. Any information or insight would be greatly appreciated. —Hazy in Huntsville
Dr. Kriesel responds:
I
’m sorry you are having trouble. First, there are a few infections that can cause optic neuritis. The most prominent one in the HIV-positive population is
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syphilis, so I would like to know your risk group (i.e., MSM or not) and the results of recent syphilis testing. (I have personally seen one patient diagnosed with MS whom we discovered actually had syphilis, not MS.) Meningitis from any cause, Lyme disease, and some other autoimmune conditions like sarcoidosis, lupus, and Sjogens Syndrome are also associated with optic neuritis. I’m not aware of any HIV drugs causing optic neuritis or demyelination, thank goodness. Second, MS and HIV are both relatively uncommon diseases with a prevalence of about one in 1,000 people. Therefore, we expect only about one in a million to have both diagnoses, so this should be considered very rare indeed. In fact, it may be even rarer than that, according to recent work by Dr. Bjorn Nexo in Denmark, published recently in the journal Epidemiology ( journals.lww.com/
epidem/Fulltext/2013/03000/Treatment_of_HIV_and_ Risk_of_Multiple_Sclerosis.23.aspx). While the European data they examined did not reach significance, it did suggest that MS and HIV do not coincide as frequently as expected. And there is an interesting case report of someone with MS and HIV, going on HIV drugs, and getting a sustained remission of the MS. Some have speculated that HIV drugs might actually suppress the development of MS, but no one really knows. Perhaps the integration of U.S. medical records into a very large database encompassing millions of patient records can begin to answer this question. If I were your doctor, I would like to see your brain MRI to look for additional lesions, and I would order additional syphilis tests, including IgG and RPR. I would consider a lumbar puncture if not already done. If any of these tests were positive, I would treat syphilis ASAP. And I would have a neuro-ophthalmologist examine your eyes for another opinion. If you did turn out to have MS, I would revert to the previous PI-containing regimen, hoping that it had some anti-MS effect somehow not replicated with Stribild, assuming you had good virologic control on the previous regimen as well. Good luck. John D. Kriesel, MD, is an associate professor
of infectious diseases and internal medicine at the University of Utah School of Medicine.
Salient ramblings
|
sal iacopelli
‘Ill fares the race which fails to salute the arts with the reverence and delight which are their due.’ —winston churchill
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Photo: Cheryl Mann
an art cure disease? Not directly, of course—however, the use of art therapy in hospitals has been proven to speed rates of recovery.
Can art stop humans from hurting each other? Not immediately, I suppose, but it can definitely affect the sentiment of the general population. Inner-city schools with thriving arts programs are proven to have less violence and crime, as well as improved academic achievement. Art presented in places where the population has little or no money makes life more bearable and creates one of the most important incentives for survival—the will to live in order to be able to create something new. The reason the Arts were created in the first place was as a balm to relieve human suffering. As Congreve said, ”Music has charms to soothe the savage beast; to soften rocks, or bend a knotted oak.” The process of creating art can serve to nurture and feed one’s soul, one’s inner life. Art can be transformative both for the self and the observer. Art is the ability and process of putting thoughts, emotions, feelings, trauma, and experience into a form to share with others for the purposes of eliciting emotions and to teach, transform, and heal. And yes, of course, sometimes simply to entertain. My absolute favorite creation was an installation for the lobby of the Blue Rider Theatre in the late ’80s for a piece about Haitian voodoo. My project was to create an altar to the Haitian god, Ogoun, who presides over war and protection. With the use of found objects, a lot of blood red paint, and gold candles, I was able to bring to life my intense feelings of outrage, finding inner strength during that very frightening and tumultuous time when scores of friends succumbed to the, at that time, nearly immediate death sentence of AIDS. I was later incredibly fortunate to be able to attend one of the first “Healing the Artist Within” workshops with Julia Cameron. The focus was to guide one through artistically creative recovery, teaching techniques and exercises to assist one in gaining self-confidence and to harness creative talents and skills. There was a strong correlation and emphasis between artistic creativity and spiritual connection. Ah, the struggles I’ve experienced with what it means to
create art and to be confident in my gifts. Whenever I’ve created something, whether it’s been puttering in my garden, decorating my living room, acting, or writing, the outcome most times feels transcendent, as if I harnessed my inner experience and pain, packaged it, and presented it, birthed it to the world, with the hope and intention of healing myself and others. If only a little bit. I lived in San Francisco for three years in the late ‘90s. Newly diagnosed with HIV, it was a chaotic, confusing, terrifying, yet exciting time for me. Faced with the prospect of a painfully shortened life span, I threw myself into the debauchery that city offers. One of the things I did to keep sane, to try to make sense of the rollercoaster I was on, was to put my thoughts to paper. I wrote weekly letters to friends chronicling the ups and downs and in-betweens of living with AIDS since moving there. At first, the letters served as a checking-in point for me, but they soon became a haven. A centering. A connection to myself and others. Which is all I ever truly desire. Little did I know at the time, I was creating fodder for a book. When I returned to Chicago, a friend urged me to compile my letters and shop it around. Fortunately, I had no idea of the odds against getting a book published, so I forged ahead. After a few months, a publisher bit and Love, Sal: Letters from a boy in The City was born. Interestingly, during my time in San Francisco, I felt bereft because I didn’t believe I was being creative; yet during that entire time, it turns out I was. My book met with moderate success. I was not showered with fame and fortune, but the experience and learning process, coupled with the ability to connect with many readers who related to my story was worth infinitely more, both spiritually and emotionally. Would I call myself an artist? Maybe not. But I am one who’s benefitted in too many ways to list from the presence of all kinds of creativity, my own and that of others. For me, the Arts will never be just a peripheral luxury, as seems to be where they’re headed, at least in this country. For me, they will always be a vital, driving life force that AIDS can’t begin to defeat. POSITIVELY AWA RE
I was able to bring to life my intense feelings of outrage, finding inner strength during that frightening time when scores of friends succumbed to AIDS.
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