STRATEGIES FOR SUCCESSFUL HIV CARE VOICES OF EXPERIENCE THE HEALTH CARE PROVIDER’S ROLE IN DEALING WITH STIGMA
POSITIVELY AWARE SPECIAL ISSUE | SPRING 2011
OVERCOMING HURDLES Silence, denial, and stigma—barriers to testing, care, and treatment for HIV
THE HIV TREATMENT & HEALTH JOURNAL OF
TEST POSITIVE AWARE NETWORK
CLICK TO READ.
POSITIVELY AWARE 5537 N. BROADWAY ST. CHICAGO, IL 60640 phone:
(773) 989–9400 | e- mail:
fax:
(773) 989–9494
publications@tpan.com
www.PositivelyAware.com EDITORIAL
EDITOR JEFF BERRY GUEST EDITOR HEIDI M. NASS ASSOCIATE EDITOR ENID VÁZQUEZ COPY EDITOR SUE SALTMARSH PROOFREADERS JASON LANCASTER, DAVID PEREZ CONTRIBUTING WRITERS KEITH R. GREEN, LIZ HIGHLEYMAN,
SAL IACOPELLI LAURA JONES, JIM PICKETT, MATT SHARP
PHOTOGRAPHERS JOHN GRESS, CHRIS KNIGHT,
JOSHUA THORNE
ART DIRECTOR RICK GUASCO MEDICAL ADVISORY BOARD DANIEL S. BERGER, MD; GARY BUCHER, MD; MICHAEL CRISTOFANO, PA; JOEL GALLANT, MD; SWARUP MEHTA, PharmD
THE DIGITAL EDITION:
POSITIVELY AWARE Now you can read the print version of the nation’s leading HIV treatment journal from your computer. More than that, you can print articles, e-mail them to friends, post them online, or share them on Facebook and Twitter. Go to www.PositivelyAware.com and click on “Read the Digital Edition of our latest issue.” Or, go directly to www.Issuu.com/PositivelyAware
Using a QR code reader app, you can also scan the QR code at left with your iPhone or
ADVERTISING & DISTRIBUTION
ADVERTISING INQUIRIES JESSIE MOTT
j.mott@tpan.com
DISTRIBUTION COORDINATOR BILLY SURBER
distribution@tpan.com
POSITIVELY AWARE is published bi-monthly by TEST POSITIVE AWARE NETWORK. © 2011. Positively Aware (ISSN: 1523-2883) is published bi-monthly by Test Positive Aware Network (TPAN), 5537 N. Broadway St, Chicago, IL 60640. TPAN is an Illinois not-for-profit corporation, providing information and support to anyone concerned with HIV and AIDS issues. Positively Aware is a registered trademark of TPAN. All rights reserved. Circulation: 85,000. For reprint permission, contact Sue Saltmarsh. Six issues mailed bulk rate for $30 donation; mailed free to TPAN members or those unable to contribute. We encourage 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 membership 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.
other smart phone to go www.
A model, photographer, or author’s HIV status should not be assumed based on their appearance in Positively Aware, membership in TPAN, or contributions to this journal.
Issuu.com/PositivelyAware
Distribution of Positively Aware is supported in part through an unrestricted grant from ViiV Healthcare.
INSIDE
SPRING 2011 V O L U M E
2 3
N U M B E R
4
OVERCOMING HURDLES: Ignorance, denial, and stigma are among the
obstacles to getting tested, starting treatment, and staying in care for HIV.
D E P A R T M E N T S
F E A T U R E S
2 | GUEST EDITOR’S NOTE
4 | Navigating the maze
13 | Compassion in the storm
3 | CONTRIBUTORS
Strategies for successful partnerships in HIV care.
A doctor breaks down barriers one patient at a time.
7 | Obstacle course
16 | Voices of experience
The role of health care providers in helping to overcome stigma, denial, and ignorance.
Men and women living with HIV weigh in.
10 | Ghosts of Christmas past
A photo essay posted to Flickr addresses ignorance, silence and denial about HIV/AIDS.
THIS SPECIAL SUPPLEMENT OF POSITIVELY AWARE (PA) IS MADE POSSIBLE THROUGH THE EXCLUSIVE SUPPORT OF BRISTOL-MYERS SQUIBB.
How would those we have lost guide us today?
20 | Positive action
COVER PHOTO AND PHOTO THIS PAGE BY JOHN GRESS
P OS I T I VELYAWARE.COM
S P R I N G 2 01 1
|
1
GUEST EDITOR’S NOTE HEIDI M. NASS
IT’S ALL CONNECTED “I just didn’t want to have… that.” “I was more ready for the treatment than the diagnosis.” “I simply had no clue because no one in my circle dared speak of HIV.” These are the words of people living with HIV/AIDS who share their stories in these pages. Their words reflect a central truth that threatens all efforts to get ahead of the U.S. HIV/AIDS epidemic: silence, denial, and stigma abound. This entire issue focuses on the incredible barriers that silence, denial, and stigma pose to the early diagnosis of HIV infection, and engaging people in care and treatment for the long haul. It also offers some clear ways to surmount these barriers. Research, clinical experience, and people living with HIV/AIDS tell us these obstacles require our attention if we have real intentions of fully treating and preventing HIV to the extent our scientific knowledge and resources will allow. We know from analyses by the U.S. Centers for Disease Control and Prevention that almost a third of people have not entered clinical care by the sixth month after a diagnosis of HIV infection and that 41% don’t stay there once they enter. In 2006, 25 years after the start of the U.S. epidemic, the Kaiser Family Foundation conducted a representative survey of Americans that showed disturbing results. The number of people who incorrectly thought HIV might be transmitted through kissing, sharing a drinking glass, or touching a toilet seat was the same as in 1990. Less than half of those surveyed knew that women with HIV could have HIV-negative babies by taking antiretrovirals. The price of this entrenched ignorance is the judgment, stigma, and denial that flow freely from it. It is a price we will continue 2
|
S PRING 2011
to pay in late diagnoses and increasing infection rates unless we address it headon and all out. Even within the field of HIV care and treatment, there is a disconnect between providers and patients about the impact of the emotional and psychological terrain of an HIV diagnosis. A 2009 survey demonstrated HIV health care providers consistently underestimate the role of emotional and psychological barriers in keeping people with or at risk for HIV infection in care. Health care providers put disproportionate emphasis on structural barriers, like transportation and financial issues, as well as mental health and substance use disorders. People with or at risk for HIV are considerably more likely to cite emotional reasons—fear of disclosure, denial, stigma—as reasons for delaying testing or not engaging in care. That’s why we have included in this issue experts from the field to tell us what helps people get linked with HIV care and stay there, how health care providers contribute to or mitigate silence, denial, and stigma, and what every health care provider can do to curtail late diagnoses and reduce new HIV infections. One clinician shares the challenges and rewards of taking on these barriers one patient at a time, one day at a time. Seven people living with HIV/AIDS complete our issue with first-person lessons in what is possible. One theme that shines through the stories of people living openly and well with HIV/AIDS is the power of peers. Michael Mugavero also shows us the vital role peers play in getting people through the trauma of diagnosis and truly engaged in their care. This can be seen in the movement in hospitals and clinics across the country toward the patient-and-family-centered
care model, and certainly echoes my own experience as a woman living with HIV. Unfortunately, for every leader featured in these pages, there are hosts of others who need to catch up and join them. In my own HIV clinic at the University of Wisconsin in Madison, where I acted as a trusted peer advocate and community educator for many years, a new medical director promptly dropped all peer advocacy from the program, curtailed peerdirected education efforts, and halted the active patient advisory board in its tracks. With sadness about this blatant disregard for peer advocacy in the clinic setting, I resigned. The story of my clinic illustrates the difference leadership makes. I was brought in nine years ago by a tenacious, mountainmoving social worker turned clinic manager who insisted that an engaged community of patients helped everyone do better. She wanted every person who walked through the door feeling isolated and afraid to have hope and power and knowledge—things she recognized could and should be created by and for the community. I lost my mentor and dear friend to ovarian cancer on January 13, 2011. The entire HIV/AIDS community where I live lost a deeply committed advocate and ally. She would be so gratified by the contributions from such respected and progressive leaders as Michael Saag, Carlos del Rio, Victoria Cargill, Michael Mugavero, and the people living with HIV/AIDS featured in this issue. Kathy Loos Bell, this one is for you.
Heidi M. Nass G U E S T E D I TO R
P OS I T I V E LYAWAR E .CO M
PHOTOS COURTESY OF THE RESPECTIVE CONTRIBUTORS
CONTRIBUTORS
HEIDI M. NASS is a
VICTORIA A. CARGILL
MICHAEL J. MUGAVERO
CARLOS DEL RIO is
MICHAEL SAAG is
lawyer turned treatment advocate, educator, and writer based in Madison, Wisconsin. She is a member of the U.S. Department of Health and Human Services Panel on Antiretroviral Guidelines and is also a member of the Drug Development Committee of the AIDS Treatment Activists Coalition. She currently serves on the Office of AIDS Research Working Group on HIV & Aging and the program committee for the Conference on Retroviruses & Opportunistic Infections. For nine years, she developed and coordinated community education, advocacy and outreach efforts at the University of Wisconsin HIV/AIDS Program. This is her second experience guest editing Positively Aware. Heidi has been living with HIV since 1995.
is the Director of Minority Research and Clinical Studies at the Office of AIDS Research (OAR) in the National Institutes of Health. Before her arrival at OAR, she was Professor of Medicine at Case Western Reserve University School of Medicine. She is the author of many publications and serves as a reviewer for the Journal of Health Care for the Poor and Underserved and the American Journal of Public Health. Dr. Cargill has spoken on local and national broadcasts, such as Morning Edition on National Public Radio and in popular magazines such as Ebony. She continues to care for people living with HIV/AIDS in Southeast Washington, D.C.
is an Associate Professor of Medicine at the University of Alabama at Birmingham (UAB), Associate Director of the UAB Center for AIDS Research (CFAR), and a practicing Infectious Diseases physician at the UAB 1917 HIV Clinic. He focuses on HIV health services research with particular emphasis on the influence of socio-behavioral and contextual factors related to HIV testing, engagement, and retention in HIV medical care, antiretroviral medication adherence, and clinical outcomes. Dr. Mugavero was recently named Interventions Section Chair for International HIV Adherence Guidelines currently under development and sponsored by the NIH Office of AIDS Research.
Professor and Chair of the Hubert Department of Global Health at the Rollins School of Public Health and Professor of Medicine in the Division of Infectious Diseases at Emory University School of Medicine. He also co-directs Clinical Science and International Research at the Emory Center for AIDS Research and is program director and principal investigator of the Emory AIDS International Training and Research Program. He is associate editor of AIDS Clinical Care and AIDS Research and Human Retroviruses. Dr. del Rio graduated from medical school at Universidad La Salle in Mexico and completed his residency at Emory University.
Professor of Medicine; Jim Straley Chair in AIDS Research; Director, Division of Infectious Disease and The William C. Gorgas Center for Geographic Medicine; Director, Center for AIDS Research at the University of Alabama at Birmingham (UAB). He has published over 280 articles and contributed over 50 chapters to medical textbooks. He has served on the NIH Office of AIDS Research Advisory Council and currently serves on the International AIDS Society-USA Board of Directors, and is a member of the HHS Guidelines Panel on Antiretroviral Therapy. Dr. Saag has been listed as one of the top ten cited HIV researchers by Science and as one of the Best Doctors in America since 1994.
P OS I T I VELYAWARE.COM
S P R I N G 2 01 1
|
3
NAVIGATING THE MAZE Strategies for successful partnerships in HIV care
According to the U.S. Centers for Disease Control and Prevention (CDC), nearly one-third (31%) of people newly diagnosed with HIV are not linked to outpatient HIV medical care within six months of a positive test and only 59% are retained in care over time. The CDC’s analysis of all the published medical literature confirmed what many public health officials and HIV care providers already knew to be true—many people delay entering care, a large portion eventually drop out of care, and some never make it to the clinic at all. 4
|
SPRING 2011
A NEW DEFINITION In recent years, increased recognition by the research community of these gaps in the continuum of care has resulted in an expanded concept of HIV adherence, beyond antiretroviral medications alone, to encompass adherence to medical care.
Commonly referred to as “engagement in care,” the distinct but inter-related processes of initial linkage (or entry) into outpatient care, followed by retention in care and re-engagement (or re-connection) to care for those lost to follow-up have garnered considerable attention, both domestically and in resource-limited settings. The increasing interest in a broader definition of adherence relates not only to the importance of engagement in HIV care to achieve optimal patient health, but also to its vital public health role in relation to the success of various P OS I T I V E LYAWA R E .CO M
PHOTO AND ILLUSTRATION: JOSHUA THORNE
BY MICHAEL MUGAVERO, MD
treatment-as-prevention models like Test-and-Treat (TnT) or Testing, Linkage to Care Plus (TLC+). The importance of engagement in care is also reflected by its inclusion in the National HIV/AIDS Strategy for the United States. The National AIDS Strategy sets forth, for the first time, explicit national goals for engagement in care. By 2015, 85% of people are to be linked to care within three months of a positive HIV test and 80% of them retained in continuous care. When considering how to achieve these ambitious goals, we are faced with a quandary—to learn more about the problem or charge ahead with the information we have? In contrast to antiretroviral medication adherence, extensively studied with countless interventions tested by randomized trials, scarce evidence exists regarding successful approaches to promote linkage to and retention in HIV care. To date, much of what is known is based on observational studies and demonstration projects that provide an important starting point but lack the scientific rigor of interventions evaluated through randomized studies. Unfortunately, we cannot wait for the results of gold-standard trials to act—the status quo is woefully inadequate and passive inaction is unacceptable. To achieve optimal individual and public health outcomes, decisive efforts are needed now to foster integrated initiatives across the continuum of care—from HIV testing to prompt linkage to and effective retention in care, to timely antiretroviral access and medication adherence. It is essential that services are provided in a seamless continuum that fits the life experience of a person testing positive for HIV, who shouldn’t be expected to navigate a complicated path of living with HIV with all necessary services separate and self-contained.
BRINGING IT ALL TOGETHER The revised CDC HIV testing recommendations that advocate routine, optout testing for adults in all health care settings have been met with numerous initiatives to promote widespread testing and awareness of HIV status. While such P OS I T I VELYAWARE.COM
LEARNING ONE’S STATUS IS A NECESSARY FIRST STEP, BUT WE KNOW THAT IT IS INSUFFICIENT, BY ITSELF, TO FOSTER ENGAGEMENT IN HIV TREATMENT AND OPTIMAL HEALTH OUTCOMES.
initiatives hold considerable promise, the importance of explicitly pairing HIV testing with linkage to HIV medical care has sometimes been lost in the enthusiasm of implementing more expansive testing programs. A fundamental need exists to more deliberately couple engagement in care with all HIV testing programs. Learning one’s status is a necessary first step, but we know that it is insufficient, by itself, to foster engagement in HIV treatment and optimal health outcomes. As HIV testing, prevention, supportive, and treatment services are often performed by different organizations, it is imperative that fragmentation of service delivery is not a barrier to a newly diagnosed individual’s ability to successfully navigate the continuum of HIV care. Indeed, studies have shown improved linkage to HIV medical care when testing is performed at a location that also provides HIV medical treatment services. Others have found that the shorter the time interval from HIV testing to an initial HIV medical clinic appointment, the greater the success in linkage to care. It is essential to go beyond health care system-level service delivery to evaluate other factors that influence HIV testing and engagement. A 2009 survey that randomly surveyed health care providers and people living with or at risk for HIV/AIDS identified substantive differences between health care providers and patients in the perceived barriers to accessing HIV testing, engagement in care, and treatment services in the U.S. Providers tended to focus on structural or circumstantial barriers to care (such as transportation and financial difficulties) and placed disproportionate emphasis on the role of mental health and substance abuse disorders. In contrast, patients were considerably more likely to rank intrapersonal or emotional
factors (denial, fear of disclosure, and stigma) as more prominent barriers to care. This fundamental disconnect has critical implications for provision of HIV services, patient-provider communication, and development of interventions and quality improvement programs across the testing and care continuum. To date, interventions to improve engagement in HIV medical care have typically focused on structural barriers— transportation, housing, case management, mental health and substance abuse services, and the like. A series of HRSA Special Projects of National Significance has demonstrated the value of offering these supportive services to encourage engagement in care.
ANSWERS AND MORE QUESTIONS The CDC ARTAS study, a 90-day case management intervention, proved highly effective in linking newly diagnosed individuals to HIV medical care. Based on the principles of empowerment and selfefficacy, case managers had up to five contacts with clients and worked to identify internal assets, strengths, and skills needed to become linked to outpatient medical care after testing positive. Nearly 80% of case management patients established care within six months compared to 60% in the standard-of-care group. In follow up to the ARTAS randomized clinical trial, a “real world” effectiveness study by the CDC similarly found roughly 80% of newly diagnosed individuals were linked to care with this brief case management intervention. Informal calculations suggest the ARTAS intervention is highly cost effective at an estimated cost of less than $5,000 per additional person linked to HIV care who otherwise would not have been. S P R I N G 2 01 1
|
5
PEER AND NEAR PEER NAVIGATORS MAY BE PARTICULARLY WELL SUITED TO ADDRESS THE FACTORS— INCLUDING STIGMA, DENIAL, AND DISCLOSURE—THAT RANK HIGH AMONG PATIENTS AS BARRIERS TO HIV TESTING, TREATMENT, AND SUSTAINED CARE.
While ARTAS demonstrated an effective way to link newly diagnosed people to an HIV treatment center, an important observation from the study was the relatively high attrition rate (people dropping out of care) in the first year after clinic entry. This has also been observed in other settings, where upwards of 20-30% of people establishing HIV medical care are lost to follow-up in the following year. Clearly, linkage by itself does not guarantee that patients will remain in care. These findings highlight the vulnerability of people entering care who are at risk for early attrition. Accordingly, the period around initial linkage to care may represent an ideal juncture for interventions and programs to foster early retention in care. Successful efforts to cultivate patient skills and self-efficacy during this critical period may have an enduring impact on retention in care and treatment outcomes for years, perhaps decades, following the initial linkage to care.
PROJECT CONNECT In 2007, the University of Alabama at Birmingham’s 1917 HIV Clinic implemented a new patient orientation program, Project CONNECT (Client Oriented New patient Navigation to Encourage Connection to Treatment). This was a response to the observation that only 69% of people calling to establish HIV care at the clinic had actually seen a medical provider within six months. Prior to CONNECT, the wait time of 28 days for an initial provider visit posed a considerable barrier to linkage to care. With CONNECT, a newly constructed non-medical orientation visit coordinated by key stakeholders (patients, doctors, nurses, social workers, and outreach educators) allows scheduling within five days of a patient’s initial call to the clinic. During the CONNECT visit, a semi-structured 6
|
S PRING 2011
interview and questionnaire are administered that include evaluation of potential structural barriers to continuous HIV care (such as transportation, housing, and case management needs). The orientation visit also includes assessment of intrapersonal factors that may influence sustained treatment across the continuum of HIV care. This includes factors such as disclosure of HIV status, stigma, social support, coping skills, and current or past intimate partner violence. In addition, baseline blood work is obtained, including CD4 count and plasma viral load. This information is available for the initial medical provider visit, which still occurs roughly four weeks after the initial call to the clinic. Importantly, implementation of Project CONNECT did not require additional clinic staff. The new, non-medical orientation visit took the place of the one-hour social work intake that historically corresponded with their initial one-hour medical visit appointment. It has proven highly effective, with 82-85% of patients linked to care annually since program implementation. When I am asked whether Project CONNECT “enables” or “empowers” individuals to maintain continuous, uninterrupted treatment for their HIV, my response is that CONNECT does both—it enables individuals to utilize existing supportive services in the clinic and community, but it also empowers them. It serves as a starting point to talk openly about disclosure, stigma, social support, and distrust—often perceived as the most pressing barriers to engagement in care.
PEER NAVIGATORS In addition to system-level programs like CONNECT, intrapersonal patient navigation approaches have garnered considerable interest in recent years. Distinct from case management, typically provided by
a social worker or case manager, patient navigation is provided by an individual who is also HIV-positive (peer) or someone who shares a similar cultural background to the patient (near peer). Peers and near peers are also sometimes referred to as community health workers, mentors, or lay health educators. Through similar life experience and shared community values and expectations, navigators are often able to relate to the life experience of a patient differently than other members of the traditional health care team. Accordingly, peer and near peer navigators may be particularly well suited to address the factors—including stigma, denial, and disclosure—that rank high among patients as barriers to HIV testing, treatment, and sustained care. In resource-limited settings, such navigation approaches have shown promise in fostering HIV testing, facilitating linkage and retention in care, and promoting antiretroviral medical adherence. In the U.S., initial demonstration projects show considerable promise, and peer/near peer navigation approaches are increasingly employed both in research and routine care settings.
CONCLUSION Integrated efforts to promote sustained engagement across the continuum of HIV care—from testing to linkage, retention, and re-engagement in care, to uninterrupted receipt of and adherence to antiretroviral therapy—must include the intrapersonal and emotional barriers faced by people living with HIV. Programs that solely address structural barriers are most certainly insufficient to foster seamless transitions for our patients across the care continuum. Provision of structural, supportive services may be necessary to help link an HIV-positive individual from the community to an HIV treatment center. However, open dialogue and attention to personal and emotional factors—factors often under-recognized as barriers by health care providers—are essential to keeping patients engaged in sustained medical care for the long haul. e P OS I T I V E LYAWAR E .CO M
OBSTACLE COURSE The role of health care providers in helping to overcome stigma, denial, and ignorance BY CARLOS DEL RIO, MD
PHOTO: JOHN GRESS
I just finished two weeks as an attending physician in the Infectious Diseases consult service at my university’s hospital and found HIV stigma, denial, and ignorance still very present. I saw a young woman with HIV and renal failure who has known she was HIVpositive for over five years and has been in care intermittently, but now is on antiretroviral therapy with a suppressed viral load. Her parents were in the room at all times during her hospitalization, yet no one in her family knows her diagnosis—she has hidden it from them. I also took care of a young man who entered the hospital with aseptic P OS I T I VELYAWARE.COM
meningitis. When I suggested he have an HIV test, the staff taking care of him appeared puzzled and told me he did not have any risk factors that warranted testing. These cases I saw on service reminded me that HIV stigma and the resulting reluctance to test have not gone away. Unfortunately, I also know that we, as clinicians, may still be contributing to the perpetuation of them.
June 5, 2011, marks the 30th anniversary of the first published description of an outbreak of pneumocystis pneumonia among previously healthy homosexual men.1 In the three decades that followed, a new virus—HIV—was discovered, a blood test to identify it was developed, and effective therapy turned a uniformly fatal disease into a chronic condition. No one would argue that there have not been great advances in the treatment of HIV. However, the epidemic continues largely unchecked—over 30 million people have been infected worldwide; more than 1.1 million people are living with HIV in the S P R I N G 2 01 1
|
7
STIGMA CANNOT BE ABOLISHED IN THE HEALTH CARE SETTING AS LONG AS IT PERSISTS IN OTHER SETTINGS—THE MEDIA, THE WORKPLACE, SCHOOLS, FAMILY, OR RELIGIOUS ORGANIZATIONS.
United States. The U.S. Centers for Disease Control and Prevention (CDC) estimates that another person acquires HIV every nine and a half minutes, which translates to over 50,000 new infections per year. It is no wonder that HIV/AIDS in America has recently been called “an epidemic which has been forgotten but isn’t gone.”2
AIDS EXCEPTIONALISM Those first cases of AIDS among homosexual men in America were met with a societal response largely characterized by blame and stigma—a combination of fear of a deadly disease for which a cause was not known, and homophobia. Activists argued that AIDS required a different response than that for other diseases in order to protect the rights of those infected. Public health authorities largely agreed that AIDS policies should be different from those for other communicable diseases. Eventually, the term “AIDS exceptionalism” emerged. 8
|
S PRING 2011
While this “human rights” approach to public health was revolutionary, it undoubtedly helped protect marginalized populations most at risk of discrimination. However, stigma did not disappear. In fact, AIDS exceptionalism may have increased it. With the advent of HIV testing in 1984, activists feared doctors would test gay men solely on the basis of their sexual orientation, without their consent. They argued effectively for HIV testing guidelines that were unprecedented for any other disease for which there was a blood test. Basically, for a health care provider to perform an HIV test, written informed consent, as well as documentation of pre- and post-testing counseling, was required. The availability of potent antiretroviral therapy in the mid 1990s led many— including public health authorities—to advocate for an end to AIDS exceptionalism. The argument was this: HIV should now be treated like any other disease
and HIV testing is nothing but the first necessary step to diagnosis and lifesaving antiretroviral therapy. In 2006, the CDC published revised recommendations for HIV testing in health care settings, recommending HIV screening in all health care settings after the patient is notified that testing will be performed and given the option to decline (opt-out testing). The new guidelines made clear that neither written informed consent for testing nor counseling prior to testing are required. 3 Unfortunately, implementation of these recommendations has been slow, as many states have not changed their state laws and continue to require written informed consent prior to HIV testing. Ironically, the very laws that were put in place to protect those at risk of HIV from stigma and discrimination may now be the reason why many are not tested for HIV or do so late in their disease process.
CHANGES, BUT NO SOLUTION It is precisely the fear of stigma that continues to prevent many people from getting tested for HIV. Once found to be HIV-positive, many people choose not to seek out health care because of the fear of real or perceived stigma. In a recent study presented at the XVIII International AIDS Conference in Vienna last summer, P OS I T I V E LYAWAR E .CO M
health care provider is associated with low linkage and retention in HIV care.7
PHOTO: JOHN GRESS
WHAT TO DO?
researchers interviewed U.S. health care providers, patients diagnosed with HIV who were in care, patients diagnosed but not in care, and people at risk for contracting HIV. The study demonstrated that health care providers underestimated the impact of emotional barriers (such as fear of people knowing, fear of stigma, fear of death) to a patient’s willingness to undergo HIV testing, enter into care, and start antiretroviral therapy, while over-emphasizing structural barriers (finances, transportation, family care) (Abstract #THPE0624). The CDC estimates that more than 232,000 people in the U.S. are living with HIV but do not know it. Many of them regularly engage with the health care system for reasons unrelated to HIV and those visits represent missed opportunities for testing and awareness. In a recent modeling analysis, investigators projected that if states that still require written informed consent for HIV testing changed their laws, it would translate to a total of 537,399 person-years (number of years multiplied by number of people affected) in life-expectancy gained.4 Health care providers commonly offer HIV testing when there is a perception of increased risk of HIV, a practice that relies on accurate risk assessment. However, some individuals who seek medical care may not be willing to share information P OS I T I VELYAWARE.COM
about their personal risk for infection, or they may not realize their risk. In fact, studies demonstrate that people who receive a positive diagnosis of HIV late in the course of the disease often do not perceive themselves as having been at risk for contracting HIV.
RISKY ASSESSMENT Health care providers are also not good at assessing risk in their patients. HIV is primarily a sexually transmitted infection and providers are, in general, uncomfortable discussing sexuality. It is not surprising, then, that assessments done by health care providers are often inadequate. 5 If patients do not offer information about risk behavior, if patients do not perceive themselves to be at risk, or if health care providers cannot elicit accurate information regarding risk from patients, HIV testing based on that risk assessment will fail. Furthermore, health care providers may avoid offering HIV testing, independent of risk assessment, because of such factors as the anxiety created by offering HIV testing or even the fear of having to inform a patient that he or she is HIV-positive.6 Many health care providers also remain uncomfortable taking care of HIV-positive patients. It has been well documented that stigma or even perceived stigma from a
There is ample evidence that stigma, denial, and ignorance remain in the health care setting, as they do in society, and that they represent a significant barrier to HIV/ AIDS prevention and care. What can we, as health care providers, do to combat stigma and increase a patient’s comfort with an HIV test, their ability to handle a positive diagnosis, and their willingness to enter and remain engaged in care and take antiretroviral therapy when indicated? It has been suggested that providers need to have cues in their offices that let patients know that they are comfortable discussing sexual matters. For example, having written materials or condoms available in the public areas or in the exam room may serve that purpose. 8 There is also a need to train providers to increase their understanding of HIV/AIDS and help them overcome the stigma they may have brought into the profession from their own societal experiences. We must recognize that stigma cannot be abolished in the health care setting as long as it persists in other settings—the media, the workplace, schools, family, or religious organizations. Finally, those of us working daily on HIV or living with HIV must not miss any opportunity to remind those around us that stigma is not acceptable—that it continues to be the Achilles’ heel of effective HIV prevention and care at both the individual and societal level. e REFERENCES
1. 2. 3. 4.
5. 6. 7. 8.
MMWR 1981; 30(2) NEJM 2010; 362:967-970 MMWR 2006; 55(RR-14) J Gen Intern Med 2011 Feb 1; e-pub ahead of print: www.springerlink.com/ content/a51255x4tl600874/ Am J Public Health 1991;81:1645-8 Clin Infect Dis. (2005) 40 (7): 1037-1040 AIDS Patient Care and STD 2007; 21 (8): 584-92 J Gen Intern Med 1997; 12: 722 S P R I N G 2 01 1
|
9
THE GHOSTS
OF CHRISTMAS PAST How would those we’ve lost guide us today? BY MICHAEL SAAG, MD
Christmas Day, 1990. My family and I were in Atlanta celebrating the recent birth of my nephew, Alec, eight days earlier. Today was his bris. I thought it was wonderful that his bris coincided with Christmas. I went up to everyone in the house proclaiming in an obnoxious, Santa-Clausian tone, “Merry Bris-mas! Merry Bris-mas!” It was a joyful day. Until the phone rang. It was the hospital in Birmingham calling to tell me that my patient, Ed Curry, had just died. I went outside for a walk. I had taken care of Ed since 1988. He lived in San Francisco in the early 1980s, in the Castro, where he was a waiter and part-time chef. Like so many others in the Castro, he was diagnosed with the “gay plague,” initially with Kaposi’s sarcoma and later with pneumocystis pneumonia. He moved back to Alabama to be closer to family and to work in the catering business. Our clinic used his catering service for all of our social get-togethers and I even enticed the Department of Medicine to use Ed for their “New Intern Welcome Reception.” Ed was the consummate 10
|
SPRING 2011
”foodie.” And I learned a lot from him. Ed loved the Castro. Ed loved food. Ed loved life. And he would have given anything to live longer. It simply wasn’t to be. Ed was one of the first patients in Birmingham to take AZT. In those days, the drug was taken every four hours around the clock. Side effects were common and Ed experienced most of them: nausea, profound anemia, fatigue, and neuropathy. But he kept taking the medicine faithfully because it was his lifeline to the next drug—the “cure.” The next drug was always just around the corner. If only Ed, and the patients just like him, could survive long enough to be there for the cure. In the end, it was neutropenia (low white blood cell count), a complication
of AZT treatment, that set him up for the episode of pseudomonas sepsis that led to his death.
WHAT IF Now, some 20 years later, I wonder “what if?” What if Ed, and others like him, could have held on for another five years? Or what if our progress had been faster? What if the triple drug cocktail we call HAART (highly active antiretroviral therapy) had been developed sooner? Perhaps we could have worked harder...faster… smarter. But we didn’t. And Ed died, along with hundreds of thousands of others during this time period. I also wonder what the world would be like had Ed Curry, and the countless other talented people we watched die in that era of AIDS, had lived. What would they have created? What joy to their loved ones? How many Christmases could they have celebrated? The emptiness created by their absence is the tragedy of AIDS. And the tragedy of AIDS echoes on every time someone dies too soon from this plague. P OS I T I V E LYAWAR E .CO M
ED CURRY: AN INDOMITABLE SPIRIT.
But there is a new tragedy in the AIDS world today.
successfully treat HIV patients, they can live a near-normal life span, be spared illness caused by HIV, and not transmit the virus to others. A winwin situation!
PHOTO COURTESY OF MICHAEL SAAG; IMAGE BY JOSHUA THORNE
WIN-WIN We now have medicines that, when used properly, can keep patients alive for decades. Most patients who take the medicines regularly, don’t miss doses, and have few—if any— side effects (common with today’s medications), will live near-normal life spans. In 1991, I could not imagine such a thing. I hoped it would happen, but I didn’t know how or when. And I didn’t dare believe we could achieve this degree of success. What’s more, for those who take the medicines and suppress the amount of virus to levels that cannot be detected in the bloodstream, the likelihood of them transmitting the virus to others via sexual activity approaches zero. We have known this for pregnant P OS I T I VELYAWARE.COM
T-CELL CAVEAT
women with HIV/AIDS for some time. Before the medicines, there was a 30% chance of a baby acquiring HIV during pregnancy or during labor and delivery. Now, if we get women into prenatal care, identify those who are HIV-positive prior to the third trimester and put them on effective treatment that suppresses viral replication to the point of undetectable virus in the bloodstream, there is no transmission to the baby. Taken together, then, when we
One key caveat is that the drugs work best when started before the patient has more advanced disease. Specifically, when therapy is started at CD4 counts less than 350 cells/ μl, mortality is higher than when it is started at higher levels. In our clinic, among those who start therapy with CD4 counts less than 50 cells/μl, mortality is 50% at eight years; between 50 and 200 cells/μl, mortality is 25%; and if started at counts greater than 200/μl, the mortality at eight years is less than 10%. Here’s the problem: Most folks don’t show up for care until their CD4 count is less than 250 cells/μl. At our clinic, and S P R I N G 2 01 1
|
11
SHAME IS A KEY BARRIER TO GETTING TESTED AND A BARRIER TO SHOWING UP IN THE DOCTOR’S OFFICE. THEY MIGHT BE SEEN ATTENDING THAT CLINIC.
many others like ours, the median CD4 count at the time of initial diagnosis is less than 300 cells/μl. There is one group, however, who consistently presents with CD4 counts greater than 450 cells/μl. Who are they? Pregnant women. Why? Since the late 1990s we have routinely tested all pregnant women for HIV. Once identified, they are referred for HIV care and started on treatment to prevent transmission of HIV to their baby and prevent progression of disease in the woman. Another win-win situation.
THE BIG QUESTION So why don’t HIV-positive patients get tested until very late in the course of disease, when symptoms are emerging and the treatments have less chance of full effectiveness? Especially when treatments are so effective and, when used early, create the opportunity to have near-normal longevity. I am sure if we had a “cancer test,” people would be lined up for miles to find out if they had cancer so they could be treated early and have a chance for long-term, meaningful survival. The answer can be summed up in one word: stigma. The general public typically condemns people who are HIV-positive. They did something, something unclean—“un-pure” —that led to their having this disease. Some go as far as to proclaim it is “God’s will.” This leads many people with HIV to feel shame. The shame is a key barrier to getting tested and a barrier to showing up in the doctor’s office. They might be seen attending that clinic. The place where the unclean are herded together in shame and humiliation. No wonder folks don’t want to be tested: Who would want to suffer this fate? Add to the mix an unhealthy dose of denial and ignorance of the clinical advances gained over the last two decades in HIV 12
|
SPRING 2011
treatment and we have a perfect storm of testing avoidance. And that is the new tragedy of AIDS. It is the tragedy of missed opportunity. Since 2006, the CDC has recommended routine HIV testing for all individuals between the ages of 16 and 64. I don’t know how or why they came up with those ages, but the point is that all patients followed in primary care settings should be tested for HIV. Once identified as HIVpositive, they should be referred for care in an HIV treatment center. But we are not doing this. Patients are still showing up late with symptomatic HIV in our emergency rooms. Often they have had several encounters with the health system over the months preceding their diagnosis and no one ever considered the possibility of HIV. The patient didn’t look like they had HIV. They had no “risk factors.” The provider was in too much of a hurry to consider the possibility of HIV. And so their diagnosis is delayed until they ultimately show up in the ER with pneumocystis pneumonia, or cryptococcal meningitis, or one of a myriad of diagnoses of advanced HIV disease. A tragedy. Indeed.
GHOSTLY ADVICE At this point we can turn to Ed Curry, and the other Ghosts of Christmas Past to advise us how to overcome these barriers. They would tell us to: 1. Educate the public about the advances in HIV disease: it is not a death sentence. Quite the contrary, people with HIV can live a near-normal life span if treated early and appropriately. 2. Reduce stigma. People with HIV are no different from the rest of us. “There but for the grace of God…” Most folks living with HIV have not done anything different than those living without it. We should think of HIV as “manageable cancer.” Have compassion for those
who have it. Help them. Be gracious and supportive. 3. Aggressively implement the policy of testing everyone for HIV, regardless of perceived risk, so that we can identify those who are positive before they experience advanced disease. Give them a chance to reap the full benefits of modern therapy. Physicians can’t determine a given patient’s risk of HIV infection. I often say that anyone who is sexually active, or even thinks about being sexually active, should be tested routinely for HIV. The testing is easy, quick, and accurate. Rapid oral tests can be administered in physicians’ offices and a result is available in 20 minutes. Once identified, a newly diagnosed HIV-positive patient can be treated in the physician’s office, or more commonly, referred to an HIV treatment center for care.
LESSONS LEARNED From a societal perspective, routine testing and linkage to care is one of our best chances of stopping HIV transmission and the HIV epidemic overall. Within the universe of HIV-positive people, approximately 25% don’t know their status. And sadly, those 25% are responsible for the transmission of over 55% of new infections each year. Imagine how much benefit we could realize if we identified those folks, got them into care, and initiated treatment to both help them live near-normal life spans and prevent transmission to others. I loved Ed Curry. I miss him. I miss his joy, his love of life, and his food! What I wouldn’t give to have had today’s tools at my disposal in 1990 to prevent him from getting so sick. And dying. But I do have the tools at my disposal now to identify the Ed Currys of the world and get them into care. I just need to know who they are. Where they live. And get them into care with us and keep them in care. The Ghosts would really be smiling then. e This article printed with permission from The Mary Fisher Clinical AIDS Research and Education (CARE) Fund at the University of Alabama at Birmingham, which holds copyright to all content. Elements from this story will be included in a full-length book to be published in 2012. P OS I T I V E LYAWAR E .CO M
COMPASSION IN THE STORM A doctor breaks down barriers one patient at a time BY VICTORIA A. CARGILL, MD
Her eyes were the first thing I saw when I walked into the exam room, and they will be the last thing I’ll forget. Red and swollen from crying, those deep brown eyes were downcast, as if weighed down with some unspeakable shame, reflecting back a life it would take months to unravel and years to understand. She was grasping a piece of paper given to her at the testing site, indicating a list of places she should go for care, and a few handwritten notes to help her remember important information. “I waited eight months to come here, you know,” she said, in a voice that was barely audible. Looking at the floor, she continued, “I didn’t want to come here, and I sure don’t want to be seen by anybody I might know. I never thought I’d end up here...” As her voice trailed off, P OS I T I VELYAWARE.COM
her eyes scanned the exam room walls covered with HIV educational materials, unleashing another wave of tears. As she covered her face with her hands, through those tears I began to learn her story, one that I have heard repeated in many versions over the years. Each time I hear the story, my heart breaks a little more. Letia* had been in and out of medical care for a number of health problems during her adolescent and young adult
life. A strep throat here, recurrent urinary tract infections there—nothing particularly life-threatening. They had been inconveniences to be dealt with, rather than major life disruptions. Like many young women, she met men, dated them, became disenchanted—or worse, abused by them—and moved on. She had a child with one and then a second with a truck driver who hauled freight along the Eastern seaboard. He seemed nice enough, but her nasty outbreak of vaginal sores and a vaginal ulcer that was later diagnosed as syphilis unmasked his infidelity and he went the way of the * Letia is not an actual patient, but a composite of many. S P R I N G 2 01 1
|
13
LETIA HAS COME TO KNOW WHAT EVERYONE WHO BATTLES HIV MUST LEARN AND ACCEPT. WE CANNOT GO BACK TO LIFE AS IT WAS BEFORE HIV, WE CAN ONLY MOVE FORWARD.
rest. Over time, the challenges of raising children with few resources and piecing together small stints of employment consumed her attention. It was a particularly bad kidney infection that led to the HIV test that caused our lives to intersect. She hadn’t told anyone—not even her mother, with whom she lived—about the test result. Instead, she tried to live her life as normally as she could, telling everyone her episodes of crying were due to a recent breakup, stress at her job, anything but the truth. 14
|
SPRING 2011
That first visit marked the beginning of our now eight-year roller coaster relationship. While her initial laboratory results indicated that she needed treatment, her low self-esteem, her inability to cope with her HIV diagnosis, and other factors she never fully disclosed led Letia to wait. She never told me this—she simply disappeared from care for 10 months until repeated vaginal yeast infections brought her back to the clinic. Until she returned, I feared she might be another one we would lose (completely?) to shame and stigma.
Angry that drug store remedies no longer brought relief, angry that she had to come back to the clinic, she lit into me. “I hate coming here—it reminds me that I have... that.” She refused to say the name of the infection out loud, but I filled it in, determined to move the conversation, and ultimately her, to a different level. “It’s because you have HIV, Letia,” I said. “This is all treatable, and we can help you every step of the way, but I can’t take the pills for you. I can’t make you take them. You have to decide to do that.” After I asked, “What do you think? Would you be willing to give it a try?” and before I could offer any other suggestions of support, like time with our adherence counselor, she cut me off. “I’ll think about it,” came her reply. She tolerated my exam, took her prescription, and left. I didn’t give up. A few days later I called a number that had just been entered into the record by the case manager and, to my P OS I T I V E LYAWAR E .CO M
surprise, I caught up with her. She sounded both pleased and annoyed that I found her. Explaining that I would like a chance to just sit and talk with her, she agreed to come in for an appointment, but on a day I wasn’t usually in the practice. I agreed to meet with her anyway. She was 90 minutes late for the appointment, walking in just as I was leaving. “Oh, I see you are heading home. Clinic must be closed so I’ll just make another appointment. My daughter had a rehearsal after school and I wanted to pick her up since it’s her birthday.” Although I felt she was testing me (would I stick around?), I also thought her mention of her daughter’s birthday offered a way to motivate her to engage more—her daughter needed her, so she would need to stick it out in treatment. “We don’t need to reschedule, Letia. The clinic has evening hours, so we’ve got plenty of time!” I laughed out loud at the P OS I T I VELYAWARE.COM
stunned look that crossed her face. And for the first time, she laughed—not just smiled—but an honest, deep-throated laugh. I’d known this woman for almost two years, and it was the first time I’d heard that sound come from her. We’ve had many times for laughter since that day, as well as tears. We’ve watched antiretroviral regimens succeed and fail. I’ve been there as she’s endured medication side effects, rejection from a potential suitor after disclosure of her HIV status, and her adolescent daughter’s rage when she learned of her mother’s HIV status. I’ve been privileged to watch periods of tremendous growth and reckoning, such as her speaking openly of her challenges and how she continues to battle them to a woman’s support group; facing her fears of disclosing her HIV status to potential partners; and working to maintain her medication adherence and clinic
appointments. Her attendance, while not perfect, is quite robust—missing only one or two clinic visits a year. Letia has come to know what everyone who battles HIV must learn, and what those who battle with them—providers, partners, family, or coworkers—must accept. We cannot go back to life as it was before HIV, we can only move forward. Today, on the eighth anniversary of that first visit, I tip my hat to Letia and the many like her who muster the strength and courage to face and fight HIV, and the many challenges it brings, every day. I will continue to do what I can—reaching out in the hope of offering guidance, support, and compassionate care—to one Letia at a time. As the rising tide of Letias swirls to envelop me and all those committed to their care, may we bring hope, compassionate comfort, and quiet strength to those caught in the storm we call HIV. e
S P R I N G 2 01 1
|
15
VOICES OF
EXPERIENCE
Men and women living with HIV weigh in on getting tested and into care Three questions were posed to a group of people who have been living with HIV/AIDS for a varying number of years. All have become strong advocates in the HIV community and share the wisdom of their experience. These are the questions:
What helped/didn’t help get you into testing and/or care? How do you cope with the stigma that surrounds HIV/AIDS and people who judge you because you are HIV-positive? n What uncensored advice would you give to health care providers about what works/doesn’t work to get people tested and into care? n n
Their answers follow.
ALL I KNEW ABOUT HIV WAS THAT PEOPLE DIED FROM IT ARICK BUCKLES TIME SINCE DIAGNOSIS: 6 YEARS
I lived in total denial of my HIV status for many years, simply due to my lack of education on life with HIV and my fear of what people might think about me. I simply had no clue because no one in my circle would dare speak of HIV. All I knew about HIV was that people died from it (I thought), people looked horrible with it (I thought), and I had it! Those were the toughest/darkest times of HIV for me. What helped get me into HIV treatment and care was accepting that I did not have to die as a result of having HIV and I could live a healthy, normal, and productive life. I came to understand this better as I met other survivors who were images of perfect health living normal and productive lives while they were encouraging others (peers) to do the same. My way of coping with the stigma surrounding HIV is to use instances where HIV stigma is presented as a time to educate others about how their actions only heighten fear and add to the spread of HIV. If ever I were presented with an instance involving HIV stigma that required me to disclose my HIV status, I would do it without hesitation.
16
|
SPRING 2011
PHOTO: CHERYL MANN
We are all people, different and unique in our own ways. While we might be living with or at risk of HIV, our needs are totally different. Getting someone engaged in care or testing is as simple as treating that individual as a person, not the disease or a risky behavior the provider has researched.
P OS I T I V E LYAWAR E .CO M
A STRONG SENSE OF COMMUNITY HELPED TO GUIDE ME MARTELL RANDOLPH-RUTTER TIME SINCE DIAGNOSIS: 11 YEARS
PHOTO COURTESY OF MARTELL RANDOLPH-RUTTER
The thing that helped get me into care was that, once I got over the initial shock of being diagnosed, it was all about educating myself. I knew that I had to learn about the disease and about treatment options so I could advocate for myself if needed. It was a serious learning curve at first, but the more I inquired, the more I found people and resources that helped me along the way. That strong sense of community helped to guide and empower me every step of the way. I think we have come a long way in the fight to eradicate stigma, but unfortunately, there’s still a long way to go. As an activist, my message has always been about empowerment and education. These are powerfully effective tools in combating stigma. In terms of disclosure, it’s simple. My diagnosis is not something anyone can threaten me with or hold over me; I have nothing to hide. I have HIV, but I have a life, too—one for which I’m very grateful. That is what I’d like people to know. Remember the word “human” in Human Immunodeficiency Virus and see more than just the deficiency of AIDS. You must never forget that the person sitting in front of you is more than just the disease; they are part of the same human family that you are part of and deserve to be treated as such.
THIS HAPPENED TO YOU—WITH EVERYTHING YOU KNOW? ROB CAMP TIME SINCE DIAGNOSIS: LESS THAN A YEAR
I got sick as a dog last fall (chills, fatigue, high temperature, nausea) for close to three weeks. I wasn’t going to go in to be told to “drink fluids and stay in bed,” but it had been a year and a half or so since my last HIV test so I went. I was still in the sero-conversion phase—with a viral load of five million copies. I started treatment immediately because I had learned that much as an HIV treatment activist. I was more ready for the treatment than for the diagnosis!
PHOTO COURTESY OF ROB CAMP
Once at the clinic, someone I know on staff said, “This happened to you, with everything you know?” Another time someone who works in HIV clinical trials said, “Why did you do it?” A third time, an HIV doctor friend made it clear that he was disappointed that I couldn’t have been more vigilant. All of this stuff, for the most part, is human—I think it is coming from people’s hearts and they don’t intend to be mean. I have found many others to be amazing pillars of support. First and foremost, dedicate resources and don’t keep cutting the budget! The education budget, the condoms budget, the access to ARVs as PrEP budget, the clean needles budget… I have been working in HIV treatment for 20 years and only stumbled into getting diagnosed early.
P OS I T I VELYAWARE.COM
S P R I N G 2 01 1
|
17
MAKING THE DECISION TO START TREATMENT TOOK TIME DAVID MUNAR TIME SINCE DIAGNOSIS: 17 YEARS
I don’t cope as well as I would like with stigma and judgment. It does get under my skin and used to paralyze me emotionally. Now I try not to focus on it and pivot onto things I can control. Being a vocal, out advocate is one of the ways I push back at stigma defining who I am. Docs, listen to your patients. They will let you know if they are ready for therapy or not and they need your empathy, guidance, and help to make informed decisions. Pushing someone into accepting treatment does no one any good. People have to commit to their own care, their own future. Show some empathy and take time to listen to the concerns of your patients.
PHOTO: COURTESY OF DAVID MUNAR
Getting into care was easy for me, but making the decision to start treatment took more time. Despite my doctor’s recommendation, I was not mentally ready for the daily reminder associated with ARV (antiretroviral) therapy. I also had concerns about adverse side effects, especially lipodystrophy issues. My decision to wait meant my T-cells continued to drop, but it gave me time to truly come to terms with HIV—something I needed to do in order to fully commit to treatment.
IT’S IMPORTANT TO SEEK OUT INFORMATION AND SUPPORT JEFF BERRY TIME SINCE DIAGNOSIS: 22 YEARS
In 1989 my physician suggested I take an HIV test. I’d lost a lot of friends to AIDS by then, but I was in a monogamous relationship and, by all appearances, was the picture of perfect health. While earlier in my life I had engaged in behaviors that put me at risk for HIV, I was still shocked when the test came back positive. My doctor didn’t have or treat any patients with HIV so he referred me to an HIV clinic where he knew I would get the best possible care. It was probably the best recommendation he could have made (even though the only treatment at the time was AZT monotherapy) because it started me on the long road to recovery from childhood sexual abuse, which I had never faced. I was very lucky to have the love and support of family and friends, as well as my partner at the time, who was—and remains—negative and a close friend. I also began attending support groups and meetings with others who were HIV-positive and I began to feel less alone.
PHOTO: CHRIS KNIGHT
I think I made a conscious decision early on to always be very open about my HIV status, and I’m truly blessed to be working at an organization and living in a large urban area that allows me to do that. I realize that not everyone has that luxury, but I think it’s extremely important for those who test positive to seek out information and support wherever they can find it, whether it be through someone they trust or from an organization that provides those types of services. If it hadn’t been for that first doctor who looked past appearances and recommended I get tested, I probably would not be here today to share my story. So thanks, Dr. Cohn, for suggesting I take an HIV test even though, at the time, you probably didn’t know how to deal with a positive test result any better than I did. 18
|
SPRING 2011
P OS I T I V E LYAWAR E .CO M
HIV DOESN’T HAVE TO BE THE END OF YOUR LIFE LOUIS SPRAGGINS TIME SINCE DIAGNOSIS: 11 YEARS
What got me into testing and care was the knowledge that I’d probably live longer and with less illness if I found out as close to being infected as possible...and knowing that there was free medical care available for me through Ryan White and ADAP if my test came out positive.
PHOTO: ENID VÁZQUEZ
I don’t think I encounter stigma as often as most because many within my inner circle of friends are also positive and I make many new friends in my work in the HIV treatment/prevention/testing field. Every so often I come across someone who blatantly has a fear of positive people, but they never seem to say or behave in offensive ways in front of me. I tend to share my story openly so maybe they get to know me before they have a chance to speak in a stigmatizing way to or about me. Make testing as readily available as possible. Be willing to go the extra mile. If a person comes to your door for a test five minutes after you close, re-open and test them while they have the courage to do it. Be straightforward with explanations and don’t talk in jargon that providers use. It is best to have peers on staff who are HIV-positive and dealing with it in healthy ways. Those who test positive should have the option of immediately speaking to other positive people who can answer questions from the perspective of a peer and be an example of how HIV doesn’t have to be the end of your life.
IT WAS BETTER TO KNOW THAN TO LIVE IN DENIAL HEIDI NASS TIME SINCE DIAGNOSIS: 16 YEARS
I was petrified to get tested, even though I had gone through a classic “sero-conversion sickness” and was worried it could be HIV. Bottom line, I just didn’t want to have… that. After I had time to adjust, I decided it was better to know what was going on and what my options were than to live in denial, which wasn’t working that well anyway.
PHOTO COURTESY OF HEIDI NASS
I’ve heard some horrendously judgmental things people have said about someone or the whole of us living with HIV/AIDS and they all seem to revolve around ignorance. Most people with HIV/AIDS aren’t very open about their status and I wasn’t at first, either, because I was afraid of being judged unfairly. In the end, though, I don’t want to live my life catering to the ignorance of others. I’m worth more than that. We all are. If health care providers of all stripes stopped thinking they can somehow tell who is “high risk” instead of just offering the test, stopped pretending that it is somehow possible for humans to always have perfectly protected sex, and dealt with their own ignorance about the virus, they’d be doing public health a great service. The best HIV clinicians I know are terrific, respectful listeners and I don’t think it’s really possible to keep your patients engaged if you aren’t one, too.
P OS I T I VELYAWARE.COM
S P R I N G 2 01 1
|
19
POSITIVE ACTION ON THESE PAGES IS A SAMPLING of photos from a World AIDS Day 2010 exhibit by people living with HIV/AIDS in and around Madison, Wisconsin. Living with HIV/AIDS: Perspectives through the Lens was born of a desire to share, inform and learn. Four women and four men living with HIV/AIDS volunteered to take on thematic assignments for six weeks in the fall of 2010. We explored various facets of our lives with HIV/AIDS, including our fears, frustrations, and joys. The goal of this exhibit was to address the pervasive ignorance, silence, and denial about HIV/AIDS. It was our hope that viewers would gain a deeper appreciation for the challenges of the U.S. HIV/AIDS epidemic and for people living with the virus. The majority of participants did not use their names for this exhibit because they do not feel it is safe for them to do so. Consider this a sobering example of how ignorance and judgment, still significant after 30 years of the epidemic, continue to feed fear and silence. —Heidi Nass TO VIEW THE EXHIBIT, GO TO www.flickr.com/photos/55901753@N02/
MY WISH BY SONJA ORTMAN HIV-POSITIVE 21 YEARS
The question here is... Do I pick up the dandelion and wish to live? Or succumb to my fears and lie down and die? I chose to pick up the flower and make a wish!
SILENCE BY YOUR NEIGHBOR HIV-POSITIVE 8 YEARS
LOVE, JOY BY ANONYMOUS | HIV-POSITIVE MORE THAN 21 YEARS
My cat is my little partner in life. I don’t have a significant other. She gives me unconditional love, is sensitive to my moods and comforts me when I have a bad day. I enjoy the love I give by taking care of her and playing with her. 20
|
SPRING 2011
Silence stifles me. Looking at my ID, a friend asks, “Why aren’t you an organ donor?” A co-worker asks me to join in a blood drive. My boss asks me why I have so many doctor appointments and blood draws. Another co-worker uses derogatory terms toward people infected with HIV. These are all opportunities to educate people and they are missed due to my fearful silence. Then it turns to anger and sadness. And there I simmer, while everyone else goes about their day in ignorance. P OS I T I V E LYAWA R E .CO M
SELF PORTRAIT ARTIST: YOUR NEIGHBOR | HIV-POSITIVE 8 YEARS
Although I yearn to share my experiences with the disease, I feel silenced by fear—fear of losing my job, fear of losing friends, and fear of judgment, and being a source of gossip. Most days I want to fight the stigma and let it all out, but a glimmering of my overwhelming fears visits me and I am silenced. Many people in my life are unaware of my HIVpositive status. This project is an outlet for my yearnings. I hope people take away a more humanistic appreciation of the struggles of HIV-positive people, knowledge, and a thirst for more knowledge.
SELF PORTRAIT (POZ NEG) BY COULD BE YOU | HIV-POSITIVE 14 YEARS
I participated in this exhibit because I wanted to meet others with HIV, which is not always so simple because people typically keep this information to themselves. I also wanted to learn more about photography and welcomed the opportunity to learn from professional photographers whose work I find to be inspiring. I hope viewers will realize the breadth of those affected with HIV and that it’s not just one group of people. The virus doesn’t discriminate like people do.
UNTITLED ARTIST: JAMISON YTTRI | HIV-POSITIVE OVER 1 YEAR
SEEING ME BY COULD BE YOU | HIV-POSITIVE 14 YEARS
The singer Harry Nilsson once remarked that “Everything is the opposite.” I had this in mind when taking this photo: what you see in a mirror is the opposite of you, but it is the only way you can see yourself. Still, it’s the closest to how others see you. P OS I T I VELYAWARE.COM
Since my diagnosis, I have always felt “tainted” and “dirty.” There’s still a lot of belief in the world that those of us with HIV can die at any moment. Romantic interests have expressed concern that they could contract HIV through casual kissing. I know we’ve come a long way in this area, but we still have a long way to go before everyone knows the facts about HIV, and is truly comfortable with casual contact. S P R I N G 2 01 1
|
21