30TH ANNIVERSARY OF AIDS: 31 LONG-TERM SURVIVORS SHARE THEIR WISDOM A SMART+STRONG PUBLICATION JUNE 2011 POZ.COM $3.99
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Standing The Man Strong Against Who Once HateHIV and HIV Had
David Kuria of the Gay and Lesbian Coalition of Timothy Brown Kenya fights “The Berlin Patient” homophobic hate crimes in Africa.
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MEET THE BERLIN PATIENT
Watch our exclusive video interview with Timothy Brown, a.k.a. “the Berlin Patient,” on poz.com/tv. Read our feature article about Brown and his journey on page 32 of this issue.
(BROWN: COVER AND RIGHT) TOBY BURDITT; (BEAN) COURTESY OF SIMON & SCHUSTER/JULIE BROTHERS; (TAYLOR) CORBIS/SUNSET BOULEVARD
BORN THIS WAY
Archbishop Carl Bean is gaga about AIDS advocacy—and his rediscovered disco classic. Search “Born This Way” on poz.com to read our exclusive interview, which covers the black church and Lady Gaga.
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Timothy Brown at his home in San Francisco
32 PATIENT NO MORE American Timothy Brown—a.k.a. “the Berlin Patient”—is the Man Who Once Had HIV. The road Brown traveled to a cure is one, fortunately, few others will travel. But his journey paved the way for critical proof of a scientific concept that just may lead to the end of AIDS. BY REGAN HOFMANN
36 THIRTY-ONE AT THIRTY For the 30th anniversary of AIDS, POZ shares the collective insight of 31 long-term survivors. EDITED BY LAURA WHITEHORN 7 FROM THE EDITOR Go to poz.com/digital to view the current issue and the entire Smart + Strong digital library.
POZ PAYS TRIBUTE DAME ELIZABETH TAYLOR
The HIV/AIDS world lost a great hero when Dame Elizabeth Taylor died. The two-time Academy Award winner cofounded amfAR and founded the Elizabeth Taylor AIDS Foundation. View our special tribute page at: poz.com/elizabeth_taylor.
Alive and Kicking
On the Ohio ADAP crisis, budget cuts and Hairdressers Against AIDS
12 POZ Q+A
Michael Gottlieb, MD—a doctor on the frontline of AIDS
18 WHAT YOU NEED TO KNOW
ABC tackles HIV stigma • One.org fights mother-to-child transmission • whoonga is ARV-free • condoms lost—and found— in Malaysia • Hot Dates • Logo partners with the Black AIDS Institute on a new campaign • AIDS book banned in Tennessee school • a new film chronicles the early days of HIV• Lady Gaga raises money for AIDS
20 WE HEAR YOU
Your responses to a new POZ blogger who writes about alternative medicine
26 WHAT MATTERS TO YOU
Homeless and HIV positive? What you need to know to stay safe
28 TREATMENT NEWS
Long-term treatment options • the latest on gels and lube • taking a med break may be harmful to your health • why inflammation hurts • using photographs to identify what helps—and hurts—your health • Cure Watch
31 COMFORT ZONE
Sometimes all you need is a long, hot bath. Plus: 5 tips to relax
44 POZ HEROES
Remembering Dame Elizabeth Taylor
POZ (ISSN 1075-5705) is published monthly except for the January/February, April/May, July/August and October/November issues ($19.97 for a 8-issue subscription) by Smart + Strong, 462 Seventh Ave., 19th Floor, New York, NY 10018-7424. Periodicals postage paid at New York, NY, and additional mailing offices. Issue No. 172. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2011 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher.
Alive and Kicking
WAS DIAGNOSED WITH HIV IN 1996, THE OFFICIAL MIDPOINT FOR THE epidemic to date. Protease inhibitors had just started bringing people back from the brink of the grave and opening up the possibility of full life spans for people with HIV. Because the doctor who diagnosed me didn’t know about HIV treatment, and because I was diagnosed during seroconversion (which made my blood work look like that of someone who had lived with HIV a long time: high viral load, low CD4 count), he mistakenly told me I had a year, maybe two, to live. Several months later, an AIDS specialist corrected the misinformation and told me I might live a long, healthy life. After struggling to accept an imminent death, I had to teach myself to embrace life again. It was a weird adjustment. And I haven’t taken my mortality for granted since. Fifteen years after I thought I was dying, I am astonished to still be here to interview a most remarkable AIDS survivor, the first person cured of AIDS—an American named Timothy Ray Brown, a.k.a. “the Berlin Patient.” Brown is an American who was in treatment for leukemia in Germany and required a stem cell transplant. His doctor, Gero Huetter, MD, chose a donor who had a genetic mutation that made his CD4 cells immune to HIV. The transplant worked, and Brown no longer has HIV. When word of Brown’s cure got out, it was big news. But the global media coverage created much confusion. I had friends emailing me saying, “Congratulations! We’re so happy for you.” What few understand is that Brown’s cure involved hundreds of thousands of dollars of experimental science, a rare and almost impossible-to-replicate set of conditions and the threat of death. A widely applicable cure is still not here. Until someone figures out how to parlay what was learned in Brown’s case into a feasible cure, all of us living with HIV just have to keep on keeping on. It’s something you all do amazingly well. Which is why for this special 30th anniversary issue we decided to share (in “31 at 30” on page 36 and online at poz. com/30) the collective wisdom of 31 marvelous, strong and inspiring people who have lived with HIV for many years—in many cases for nearly the life span of the epidemic itself. Their words will further inspire you to good health. June 5 marks 30 years since the first cases of what we now call AIDS were publicly reported. On that day let’s pay tribute to the more than 25 million people who have died of AIDS and renew our hope for the long and healthy lives of the 33.3 million others of us with HIV who are alive and kicking. I am so grateful to still be here. I made it for several reasons: the love and support of my family and friends, access to care, and the education, empowerment and inspiration I found on the pages of POZ long before I became its editor. It is now my joy to offer the same survival tool to others. Each and every one of you inspires me every day. Keep telling us your stories. We listen to your needs, fears, triumphs and hopes. Continue to fight hard and know that we will be with you as long as you are living with HIV—and until we see the day, together, when HIV is kicked for good.
REGAN HOFMANN EDITOR-IN-CHIEF JENNIFER MORTON MANAGING EDITOR ORIOL R. GUTIERREZ JR. DEPUTY EDITOR KATE FERGUSON, LAURA WHITEHORN SENIOR EDITORS WILLETTE FRANCIS, CRISTINA GONZÁLEZ ASSOCIATE EDITORS
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economic growth. Medical innovation will be stiﬂed. Such a prescription helps nobody, including those with HIV. S. CROWE HOUSTON
Where Are Your Tears For People With AIDS?
Speaker of The House of Representatives John Boehner (R–Ohio)
THE REAL DEATH PANELS In “For Cryin’ Out Loud” (March 2011), Mark Leydorf reports that HIV advocates in Ohio—home of U.S. Speaker of the House John Boehner— are ﬁghting to save the state’s AIDS Drug Assistance Program (ADAP) and the lives of people living with HIV. Leydorf might make note that Obama’s 700-mile-perhour spending has put our national economy and stability of the dollar at great risk. We cannot tax or print enough money to take care of all Americans on Medicaid, Medicare, Social Security, education and hundreds of [other] programs. Short of budget cuts, the only solution Leydorf leaves politicians is to enslave the producers of society to crushing tax burdens thus destroying
The much-touted and feared death panels have arrived. I cannot fathom anyone making the decision to deny life-sustaining meds for one person, let alone for 1,000. Perhaps some of our decision makers need a course in HIV 101. Or maybe they just have their heads in the sand. When I told a family member in Ohio about the ADAP cutbacks and explained that recipients will die without their meds, I was met with silence. Silence=Death. JEFF BROOKLYN
Boehner is the typical Republican! He cries about his issues and does not empathize with others. When the [memorial service] for the people killed and injured in [the mass shooting near Tucson] occurred on January 12, Boehner was [hosting a cocktail party for the Republican National Committee]. One should not expect him or the Republican Party to have concern
Recently we asked readers to share their thoughts on the cure for HIV/AIDS. The majority of people believed that a cure would be found—just not in their lifetime. Perhaps that’s because most of you believe not enough money is being spent on cure research. 1. Do you think a cure will be found in your lifetime? 2. Do you think a cure for HIV/AIDS will ever be found? 3. Do you think enough money is being spent on finding a cure? Source: POZ October/November 2010 Survey
for people with HIV! Stop deluding yourselves. DAVE CITY WITHHELD
DEADLY CUTS On February 14, we reported on U.S. House Republicans’ proposed cuts to HIV/AIDS programs both at home and abroad, which include reductions to ADAP, research funding to the National Institutes of Health, and HIV humanitarian contributions to developing nations. Here’s what you had to say:
JOHN WASHINGTON, DC
LET’S TALK ABOUT SEX “Sex and the Salon” (March 2011) demonstrates how L’Oréal’s hairdressers are lowering HIV rates by discussing the virus with their clients in the salon.
Cutting funding for ADAP will cost billions in increased costs for hospitalizations and lost productivity. We need Congress to invest more money in this vital program, not less. Congress should follow [President] Obama’s lead and make budget cuts with a scalpel, rather than with an ax.
Kudos to L’Oréal for taking action. It says volumes about the management and their willingness to take risks. The article comments that “after all, stigma and discrimination still abound regarding HIV.” These informal chats between hairdressers and clients will help everyone become more educated about HIV/AIDS.
KAREN BATES COLUMBIA, SC
[Not only will AIDS budget cuts increase] long-term medical costs, but the infection rate will rise as well from decreased prevention research (vaccines, microbicides, etc.) and untreated people with high viral loads. These shortsighted policies will lead to higher costs. The
Correction: In the article “For Cryin’ Out Loud” (March 2011) we mistakenly reported that the bill to cover the ADAP shortfall with stimulus money (introduced by Senator Richard Burr, R–N.C.) failed when Democrats overwhelmingly voted nay, when in fact, the bill has not been voted on.
87%% 87 NO NO
Republicans are deﬁcit hypocrites. POZ needs to lead the charge in 2012 to vote out anyone who votes against us.
poz.com JUNE 2011 POZ 11
THE POZ Q+A
BY ORIOL R. GUTIERREZ JR.
Frontline Physician The doctor who diagnosed the first AIDS cases reflects on 30 years of the epidemic.
ICHAEL GOTTLIEB, MD, IS A PHYSICIAN AND IMMUNOLOGIST. He was the lead author of the first public account identifying AIDS, which was published in the Morbidity and Mortality Weekly Report (MMWR) by the U.S. Centers for Disease Control and Prevention (CDC) on June 5, 1981. That date is now regarded as the beginning of the epidemic. Thirty years later, Gottlieb continues to treat people with HIV. Here, he shares his early experiences fighting the virus, the changes he has witnessed in the course of the disease and his predictions for the years to come. How did you come to write the piece in the MMWR?
In January 1981, I was asked to see a patient for an immunology consultation in my Los Angeles practice. He was a 31-year-old gay man with a fever and weight loss. He also turned out to have Pneumocystis pneumonia. He had almost no CD4 cells. I’d never seen anything like his case before. Word trickled out into the medical community that I was seeing this patient. Colleagues referred three more patients who were essentially carbon copies. Now we
12 POZ JUNE 2011 poz.com
had four men and were convinced that this was something that would become more common. [My colleagues and I] contacted the editor of The New England Journal of Medicine, who advised talking to the CDC. [An official] assigned from the CDC to the Los Angeles County Department of Public Health was unaware of anything unusual in the local gay male population. He checked with the CDC, and they were not aware of anything nationally. At that point they invited us to write the MMWR report, which was titled “Pneumocystis Pneumonia—Los Angeles.” Doctors all over the country started telling me about additional cases and asking for advice about how to manage them. What was it like being Rock Hudson’s physician?
In 1984, I got a call from a dermatologist in Beverly Hills who asked if I would
Michael Gottlieb, MD, at his offices in Los Angeles
come see a VIP patient of hers at her office. That’s when I met Rock Hudson. He was a very pleasant person, a very nice guy. I had to take special measures to protect his confidentiality. When I first met Hudson, I had no way of knowing that his diagnosis would ever go public. He went to Paris [for treatment] and then returned to Los Angeles when we made an announcement of his condition. Rock Hudson’s disclosure led to a more widespread awareness that we were in the midst of an epidemic. Even today there are still celebrities with HIV who hesitate to share their diagnosis because of stigma and fear that it’s going to ruin their careers. There are still prominent people with HIV who die whose obituaries never mention HIV. I wish people would be more open. After 30 years, what fuels your work as an HIV physician?
An HIV diagnosis was once considered a death sentence. Today after a diagnosis, life is never the same, but people are much less panicked. They know there is treatment available. Today results can be outstanding, which is a far cry from what happened 30 years ago or even 10 years ago. To see [progress around an] illness like that is an accomplishment for the field and personally gratifying. At the beginning of the epidemic, what kept me going was the lack of anything to treat HIV and the prospect that something useful might be developed to control the infection. AZT gave me hope that we might find another drug or combination of drugs that would control it. [The field of HIV care] is always changing. It’s the most exciting area of medicine. I have had people say to me, “What you do must be so stressful.” People who are not involved in AIDS think this is a gloomy business, but I enjoy what I do. I like not just the technical aspect of medications, but also the overall care of my patients from an emotional and physical perspective. You also treat people for hepatitis C. How does hep C, another retrovirus, compare with HIV?
Hep C is today where HIV was 19 years
ago in terms of being on the verge of an explosion of new treatments. Issues of tolerance and resistance are the same ones we as HIV physicians have dealt with over the course of the last 15 years. People who treat HIV are very well qualified to deal with those issues. They just have to get up to speed in terms of understanding the hepatitis process. Hep C and liver disease in general are now some of the leading causes of morbidity for patients with HIV. Our objective [for those who are coinfected] is to manage or eradicate their hep C so that their liver disease isn’t the cause of their premature deaths. For those who are coinfected, the new drugs soon hitting the market will have some toxicities, such as rash and anemia,
independence. In return, those women provide care for village orphans and provide HIV/AIDS education and sexual health education. GAIA also provides HIV testing with mobile clinics. What do you see happening in the next 30 years of AIDS?
Let me get out my crystal ball. HIV is going to continue to be on the front burner. The pace of the epidemic may be slowing, but there is still a lot of HIV transmission, particularly in developing countries. The disparity between HIV in Western countries and developing countries will continue to be embarrassing and morally problematic. In the absence of a vaccine, the approach known as “test and treat” will be tried in the developing world.
“In the next 30 years, a high priority has to be neutralizing the stigma associated with HIV. Stigma is very much alive.” that are going to be a challenge to manage. However, I think we can work through those toxicities. Tell us about the Global AIDS Interfaith Alliance (GAIA). You’re a board member.
As things were improving here in the United States, things were getting worse for people with HIV/AIDS in developing countries. I hadn’t done anything in the international arena and felt very badly about that until I went on the board of GAIA in 2006. GAIA was founded in 2000 to provide services for people with HIV/AIDS in Africa. They started with Malawi, one of the poorest countries in Africa. At the time, there was limited outside involvement in Malawi addressing HIV/AIDS. GAIA helps Malawi with its HIV/ AIDS epidemic on a very grassroots level. They help care for people who are sick because of AIDS, and they help care for AIDS orphans. They currently give stipends to village women to help ensure their economic
[Test and treat advocates for large-scale testing, then getting people on treatment if they’re positive, thus preventing transmission of the virus.] In the United States, the epidemic will continue to spread among the poor, people of color, IV drug users, gay men and in the South. A preventive vaccine is a huge priority. I am more skeptical about therapeutic vaccines, although I hope I’m wrong. I am not aware of any therapeutic vaccine developed for any disease. I don’t think there is any precedent for an effective therapeutic vaccine. We still don’t know what kind of immune response we need to gather. The likelihood that a therapeutic vaccine is going to eradicate HIV seems small to me. In the next 30 years, a high priority has to be neutralizing the stigma associated with HIV. Stigma is very much alive. [Reducing] it may take time, but it certainly would help people who are HIV positive to be more open about their status and to see a reduction in the discrimination that [often] occurs when they disclose. ■
poz.com JUNE 2011 POZ 13
WHAT YOU NEED TO KNOW
BY CRISTINA GONZÁLEZ
Discrimination Can’t Hide From Hidden Cameras
As part of its “ethical dilemma” show What Would You Do?, ABC set out to find how much has changed in the 30 years since the first reported AIDS cases—and how much hasn’t. Hidden cameras set up in a New Jersey diner rolled as an HIV-positive actor casually revealed his status to a waitress, loud enough for others to hear. A horrified customer was worried that HIV could be spread like a cold. As a result, the same customer refused to handle the menu that the HIV-positive actor had touched. But well-informed diners invited the actor to share a meal. Catch the segment “You Have AIDS?” on abc.com.
HIV-positive actor (right) gets the cold shoulder.
Bono to Obama: No Babies With HIV Every day more than a 1,000 babies are born with HIV worldwide; more than half won’t live till their second birthday. One.org cofounded by Bono, is working to change that with the “No Child Born With HIV by 2015” campaign. In conjunction with (RED), one.org is asking the Obama administration to commit $6 billion to The Global Fund to Fight AIDS, Tuberculosis and Malaria over the next three years to send antiretroviral meds to pregnant women in Africa. To add your name to the petition, go to one.org.
18 POZ JUNE 2011 poz.com
700,000 Stolen Condoms Recovered No ARV in Whoonga Reports that a South African drug called whoonga contains antiretroviral (ARV) medications are wrong. Whoonga is a popular (and illegal) drug that is smoked and is made up of mostly low-grade heroin. But samples taken by South Africa’s University of KwaZuluNatal found no traces of ARVs. The Treatment Action Campaign, a South African AIDS group, worries the rumors will fuel theft of ARVs, which could jeopardize supplies of meds for HIVpositive people.
In February, Malaysian police reported the theft of 700,000 ultrathin condoms en route to Japan. They were loaded into a container at a factory in northern Malaysia, but the shipment arrived in Tokyo empty with new locks. The condoms are worth $1.5 million at Japanese retail prices. In March, six suspects were arrested. They allegedly stored the condoms in a warehouse and a private home hoping to sell them later. They each face 10 years in prison if they’re convicted.
HIV Goes to Sundance In the early 1970s, gay men and lesbians flocked to San Francisco to find acceptance. And they thrived until the early ’80s, when AIDS attacked. In We Were Here, which earned praise at the 2011 Sundance Film Festival, documentarian David Weissman depicts this era through the lives of five individuals who saw the LGBT community face both devastation and rebirth. Go to wewereherefilm.com for more information.
We Were Here gives voice to a lost era.
(SMOKING) DREAMSTIME.COM/NAMAMAX; (MOMS) COURTESY OF ONE/MORGANA WINGARD; (CONDOM) ISTOCKPHOTO.COM/YONG HIAN LIM; (AIDS POSTER BOY) COURTESY OF WE WERE HERE/MARIE UEDA; (MAP) ISTOCKPHOTO.COM/MINIATURE; (GAGA) GETTY IMAGES/KEVIN WINTER
June Is LGBT Pride Month
June 5 — Marks 30 Years of AIDS The first report identifying AIDS was published
AIDS Book Banned in Tennessee
June 8 — National Caribbean American HIV/AIDS Awareness Day caribbeanhealthaidsday.com June 27 — National HIV Testing Day poz.com/hivtesting
LGBT People Are Greater Than AIDS, Too
Logo, an MTV Networks basic cable channel for LGBT people and their allies, has partnered with Greater Than AIDS, a national HIV education initiative led by the Black AIDS Institute, to launch “beCause: be Greater Than AIDS.” This campaign will be the first in a series of “beCause” social campaigns to promote empowerment for LGBT people.
HIV Testing Hits High School
The 80-person senior class of San Francisco’s private Urban High School is getting tested for HIV. Oliver Hamilton, a student at the school, proposed the project after working with a doctor who treats people with HIV. Hamilton views the event—built on a combination of volunteers, donated oral swab kits and plenty of snacks—as a unique opportunity to use peer pressure to raise awareness and get students tested. Here’s hoping the class of 2011 passes with flying colors.
A Tennessee school board changed its library policy—it now allows school directors to remove books from library circulation on an emergency basis until reviewed by a committee. The policy change was made after a parent complained about a book containing selections from Borrowed Time: An AIDS Memoir by Paul Monette, which was available in the library of the Cheatham Middle School. At least one board member had First Amendment concerns. As for the AIDS-related book, it has been stashed in a restricted library area. Free speech, anyone?
Lady Gaga Wants $50M
To date, the MAC AIDS Fund has raised more than $200 million through sales of its Viva Glam lipsticks and lipglasses. Last year, Lady Gaga did her part by joining Cyndi Lauper as a spokesperson for the campaign. But she’s not stopping there. Gaga is reprising her role and hoping to raise an additional $50 million by the XIX International AIDS Conference in July 2012. It’s time to put your faces on, little monsters.
poz.com JUNE 2011 POZ 19
WE HEAR YOU
BY WILLETTE FRANCIS
In his POZ Blog entry “Alice Down the Rabbit Hole” (February 12), Mike Barr shared how he uses alternative medicine to help manage his HIV. After reading his story, many of you expressed how important such regimens have been throughout your journey to good health. Some of you even expressed an interest in knowing how these treatments, such as acupuncture and herbal remedies, could boost your overall wellness and quality of life. Here, a sampling of your comments on alternative medicines.
Just stumbled upon your most excellent blog. I’ve been cruising around Chinatown in San Francisco and Oakland trying to learn something from [herbal medicine] practitioners in regard to HIV. It has not been an easy path. Please keep writing as it really helps and propels others. I, too, have been less optimistic about reducing the daily ingestion of modern science. Grateful as I am to be here, I know other therapies have made that journey possible. —Dave W.
Please keep this going. I would love to learn more about Chinese medicine and herbs. I am very interested as I do tons of holistic stuff and it seems to work on me. —Lily Rose
For several years I was able to get acupuncture and herbal medicines through a grant to my local AIDS service organization. My health radically improved. However, the funding for this program dried up, and it has been many years since I have been able to access traditional Asian medicine. What are those of us on fixed incomes to do? Acupuncture, etc. are not cheap if you are paying out of pocket. —Michael Palumbaro
Go to blogs.poz.com/mikebarr to read more about alternative medicine and share your own story or question.
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GETTY IMAGES/DORLING KINDERSLEY CREDIT
Stepping into the world of Chinese medicine is not so simple. Working with a practitioner who is an herbologist is important, as they have the knowledge and access to formulas. Even though herbs [can] be bought on the market, it is best to get a trained practitioner to prescribe for you. An acupuncturist who does herbs can help you. Just ask around; Chinese medicine is getting more and more popular. You will be surprised how many people have gone for acupuncture. —Mark Kuebel
I would be very interested in more talk of Eastern medicine and other informative messages you have to provide. My [lab] numbers are great, but my body says different. I have definitely noticed a difference in the past 10 years of being healthy, mostly the night sweats and mood swings. —Geo
Covalent vaccination and catalytic antibodies: A new way of looking at an HIV vaccine Authors: Sudhir Paul,*† Stephanie A. Planque,* Yasuhiro Nishiyama,* Miguel Escobar,* Zachary Barnett‡ and Richard J. Massey†
Introduction There is global concern regarding HIV drug-resistance, drug toxicity, and increasing drug costs. Many health care professionals believe that eradicating HIV will require development of a vaccine that prevents infection by the virus. Yet, one by one, classical vaccine approaches used for combating other infections have proved ineffective for HIV in clinical trials. Nearly three decades of research has been invested in understanding how HIV overcomes immune defenses and why candidate HIV vaccines have been ineffective. Immune defense is provided by an ensemble of molecules and cells with innate and adaptive capability to counter infectious microbes. The innate immune capabilities have evolved over millions of years of evolution. Their functional importance resides in the immediate blockade of infection, for example, killing of microbes by macrophages that migrate to the infection site due to an inﬂammatory response. Vaccines generally work by inducing adaptive immunity developed over days to weeks. The functional mediators of adaptive immunity are antibodies and T lymphocytes that speciﬁcally recognize microbial antigens and help remove the microbe. HIV has developed various mechanisms to overcome natural immune defenses of humans. These mechanisms are also the reason for the failure of classical immunological approaches to yield an effective HIV vaccine.
Challenges posed by HIV immune properties Thousands of different HIV-1 strains have emerged. Most infections are initiated by strains that utilize chemokine coreceptor CCR5 for entry into host cells. Coreceptor CXCR4-dependent strains emerge with time. Both types of strains use CD4 as the primary host receptor to infect T cells and macrophages. Different parts of the world are dominated by strains belonging to different HIV-1 subtypes.1 Subtype C strains are found primarily in the developing world and account for a majority of infections globally. A central problem is that most exposed components of HIV mutate rapidly, generating structural variations of
the viral coat proteins. The mutable coat regions are also its dominant antigenic regions, also known as epitopes, against which the immune system produces antibodies and T lymphocytes.2 The original infecting strain induces a robust immune response, but new quasi-strains develop over the course of infection, and protection against the virus is transient at best. Similarly, the antigenic constituents incorporated in previously-tested candidate vaccines were drawn from a single HIV strain or at most a few strains. The candidate vaccines induced antibody responses and T cell responses mostly directed to the mutable coat protein regions, compromising their efficacy against structurally divergent virus strains in different individuals and in different parts of the world. Over the course of the humoral immune response, antibody complementarity determining regions (CDRs) undergo rapid mutations under the selective pressure of antigen binding. This process generally generates neutralizing antibodies capable of high affinity antigen binding. One of the few immune vulnerabilities of HIV is the maintenance of its exposed CD4 binding site (CD4BS) on the surface of the coat protein gp120 in mostly constant form. The CD4BS is essential for virus-host cell binding and infection. Despite minimal chemical variability of the CD4BS, the immune system fails to mount a sufficiently protective antibody response to the CD4BS. The reasons are complex. First, individual epitopes within the CD4BS are conformationally plastic, that is, the three-dimensional epitope structure can change during the process of infection. Initial CD4 binding at the CD4BS region located in the outer gp120 domain (CD4BSod) may induce a conformational change of the CD4BS core region composed of amino acids 421-433 (CD4BS core) that is essential for stable HIV-host cell binding. Consequently, the CD4BScore might exist in a conformation vulnerable to immune attack only transiently during the process of CD4BS-CD4 binding. Second, HIV utilizes an unusual evolutionary trick to preclude production of a protective antibody response by B lymphocytes. The CD4BScore expresses superantigen character.3,4 Superantigens bind speciﬁcally to innately-produced antibodies expressed on the surface of B lymphocytes, the B cell receptors. Unlike the stimulatory binding of traditional antigens to the B cell receptor, superantigen binding occurs at the antibody framework
regions, and the functional consequence is down-regulation of B cell differentiation, premature cell death and failure to mount an adaptive antibody response. We suggested that the innate superantigen recognition capability of antibodies was originally developed by Darwinian evolution processes over millions of years as a defense against primordial microbes.5 HIV appears to have evolved a CD4BS with superantigenic character as the means to preclude an adaptive antibody response.
Novel vaccine approaches Induction of neutralizing antibodies is the cornerstone of effective vaccination. Following failure of candidate protein and polypeptide vaccines to induce sufficient neutralizing antibodies to the free virus,6 the focus shifted to developing candidate DNA vaccines that induce cytotoxic T cells directed to HIV infected cells.7 This approach was also ineffective. The RV144 vaccine composed of fulllength gp120 protein and a canary pox vector expressing the gp120/gag/protease genes reduced the risk of infection by 31%.8 It is unclear whether this is a statistically or clinically meaningful effect. Many in the ﬁeld of HIV vaccine development believe that combined induction of neutralizing antibody and cytotoxic T cells is the favored approach. As the individual antibody and cytotoxic T cell responses to the mutable HIV regions are ineffective, it is not clear how combining these responses can be the basis for effective vaccination. Our view is that HIV vaccination will be feasible once an immunogen is identiﬁed that induces a sufficient immune response to a structurally constant region of HIV essential for virus infection and propagation. The coat protein gp41 expresses certain structurally conserved regions. The vaccine approach of Barton Haynes at Duke University entails an epitope of the HIV gp41 coat protein located in the proximity of the lipid membrane.9 Polyspeciﬁc antibodies that recognize this epitope in conjunction with membrane lipids neutralize genetically divergent HIV strains. Membranes of uninfected cells also contain the lipids as self-antigens. The immune system is generally tolerant to the self-antigens, and anti-HIV antibodies that react with self-antigens can exert deleterious effects on the host. Nonetheless, there is strong interest in the notion that breaking tolerance to self-antigens may guide development of an immunogen capable of inducing HIV neutralizing antibodies. Concerning the epitopes of the CD4BS, there is no evidence for insufficient physical exposure as the cause of insufficient antibody production. Similarly, an intrinsic defect in the CDR adaptive mutational process is theoretically possible, but there is no evidence that this is the reason for insufficient anti-CD4BS antibody production following HIV infection or administration of the previously-
tested vaccine candidates. Burton and coworkers have identiﬁed rare antibodies that recognize a segment of the CD4BS (the CD4BSod) and neutralize genetically divergent HIV strains comparatively broadly.10 Reverse-engineering of peptides with structure complementary to the neutralizing antibody binding site can be conceived as a route to a vaccine that induces the synthesis of similar neutralizing antibodies upon administration to humans. A peptide immunogen designed using as template a neutralizing antibody to a segment of the CD4BS did not induce broadly neutralizing antibodies.11 Targeting a larger CD4BS surface area by a reverse-engineered immunogen could be more fruitful. Our studies have identiﬁed the CD4BScore as the proverbial Achilles heel of the virus. In the rare circumstances that anti-CD4BScore antibodies are produced, they neutralize HIV strains from across the world with exceptional potency.12,13 Such antibodies were found in non-infected patients with lupus, an autoimmune disease that is rarely associated with concurrent HIV infection, and in long-term survivors of HIV infection. It appears that HIV is highly vulnerable to neutralization by core specific antibodies to the CD4BScore region, but the adaptive immune response to the region is insufficient to control infection under normal circumstances. A clear path to an HIV vaccine that induces broadly neutralizing antibodies can be foreseen if the following milestones can be reached: a) Reproduction of the correct CD4BScore conformation in the vaccine candidate, and b) Rapid adaptive production of neutralizing anti-CD4BScore antibodies upon administration of the vaccine candidate. Our preclinical studies in experimental animals based on the covalent vaccination strategy suggest the feasibility of attaining the foregoing milestones.14,15 Central points in the strategy are: • The vaccine candidate, an electrophilic polypeptide containing the CD4BScore, which binds covalently to B cells, resulting in production of broadly neutralizing antibodies. The polypeptide is activated chemically by linking lysine side chain to the strongly electrophilic phosphonate diester group. Naturally-occurring nucleophilic sites are found ubiquitously in B cell receptors.16,17 Noncovalent binding of the CD4BScore peptide epitope to the B cell receptors positions the electrophilic group within covalent binding distance of nucleophilic groups. The ensuing covalent bonding between the electrophile and nucleophile liberates a very large amount of energy that initiates productive signal transduction, IgM→IgG/IgA antibody class switching and differentiation of the cells into antibody-secreting plasma cells. • Recruitment and clonal expansion of the small subset of B cells capable of producing antibodies with innate, pre-existing specificity directed to the CD4BS core. The
Studies have identiﬁed the CD4BS as the proverbial Achilles heel of the virus.
CD4BScore binds at a site located mainly in the framework regions of B cell receptors. Neutralizing antibody production occurs without dependence on typical adaptive mutational processes occurring in the CDRs. However, adaptive improvement of the antibodies due to mutations of the framework regions is feasible, as suggested by evidence from immunization of animals with electrophilic gp120 and an electrophilic CD4BScore peptide mimetic.18,19 Robust neutralization of diverse HIV strains by the antibodies in tissue culture was evident. The antibodies displayed speciﬁc recognition of the CD4BScore, conﬁrming mimicry of the native CD4BScore by the vaccine candidates. • Immunization with full-length electrophilic gp120, which overcomes the physiological hurdle in producing antiCD4BS core antibodies. Neutralizing antibodies to electrophilic gp120 displayed binary epitope reactivity, that is, the simultaneous ability to bind the CD4BScore at the antibody framework region site and a second spatially distant epitope at the traditional antigen binding cavity formed by the CDRs. The binary speciﬁcity suggests that simultaneous stimulatory binding of the second immunogen epitope at the CDRs compensates for the down-regulatory CD4BS core binding at the framework regions.
Secretory IgA class antibodies found at mucosal surfaces of non-infected humans catalyze rapid gp120 cleavage and neutralize HIV in tissue culture.23 It may be hypothesized that the catalytic IgAs constitute a natural defense against mucosal HIV transmission. In addition to inducing reversibly-binding antibodies, the covalent vaccination approach described in the preceding section stimulates adaptive improvement of the nucleophilic function of antibodies. This is feasible because covalent binding of the electrophilic vaccine candidate selects B cell receptors with the greatest nucleophilic reactivity.24,25 In turn, the improved nucleophilic reactivity enhances antibody inactivation of HIV as follows. First, speciﬁc pairing of the antibody nucleophile with the weakly electrophilic carbonyls of gp120 forms stable immune complexes with covalent character. Covalently binding antibodies were induced by immunization with the electrophilic analogs of full-length gp120 and a synthetic gp120 peptide. Reversibly bound antibodies dissociate from HIV readily. As the covalent bond is very strong, the covalent antibody-HIV complexes do not dissociate, increasing the HIV neutralization potency. Second, if the antibody combining site supports water attack on the covalent gp120antibody complex, catalytic gp120 cleavage occurs. A subset of antibodies obtained by immunization with the electrophilic CD4BScore peptide catalyzed the cleavage of gp120 rapidly. Treatment of HIV using reverse transcriptase and protease inhibitors requires vigilant management because of the potential for toxicity and emergence of drug-resistant strains. This has generated interest in passive immunotherapy using monoclonal antibodies. Control of viremia upon infusion of reversibly binding anti-HIV antibodies in humans was transient, suggesting emergence of antibody-resistant viral mutants. Very large quantities of the antibodies were necessary to reduce viral load, a reﬂection of modest antibody neutralizing potency. Can catalytic antibodies be used for passive immunotherapy of HIV infection? The answer depends on the epitope speciﬁcity and neutralizing potency of the catalysts. Targeting the CD4BScore minimizes the opportunity for development of antibody resistant strains, as CD4 binding and mutations in the CD4BScore are predicted to result in loss of CD4 binding activity. Indeed, anti-CD4BScore antibodies from long-term survivors of HIV infection neutralized the autologous HIV strain potently. There is no evidence, therefore, for emergence of resistant strains despite the selective pressure imposed by the anti-CD4BScore antibodies over prolonged durations. Anti-CD4BScore antibodies neutralize HIV in tissue culture with nanogram/ml potency, supporting their potential therapeutic application. In addition to gp120, two additional HIV proteins essential for virus infection are cleaved by catalytic antibodies, reverse transcriptase and integrase. 26,27
The neutralization potency of catalytic antibodies is superior to traditional antibodies that bind the antigen reversibly on a 1:1 basis.
Taken together, our studies indicate the feasibility of developing an HIV vaccine capable of directing the innate CD4BS recognition capability of B cells towards a favorable maturational pathway, eventually resulting in synthesis of broadly neutralizing antibodies.
Catalytic antibodies (Abzymes) Reversible CD4BS binding by antibodies alone is sufficient to neutralize HIV. A subset of antibodies produced by B cells express the ability to catalyze the breakdown of peptide bonds, destroying gp120 permanently.20 A single catalytic antibody molecule is reused to cleave thousands of gp120 molecules over its biological half-life in blood (1–3 weeks). The neutralization potency of catalytic antibodies, therefore, is superior to traditional antibodies that bind the antigen reversibly on a 1:1 basis. Antibody catalytic sites belong to the serine protease enzyme family, consisting of nucleophilic sites similar to the archetypical SerineHistidine-Aspartate catalytic triad of trypsin. Catalysis occurs by formation of a covalent intermediate and water attack on the intermediate, regenerating an antibody molecule that is reused for additional catalytic cycles. Catalytic cleavage of gp120 occurs by noncovalent CD4BScore binding followed by cleavage of peptide bonds. The catalytic sites are present in antibodies produced without exposure to HIV.21,22 Sexual transmission of HIV generally occurs through the rectal and vaginal mucosal surfaces. Only a minority of sexual intercourse events with an infected individual results in transmission of the virus.
EDITOR: ROBERT VALADÉZ ASSISTANT EDITORS: SEAN CAHILL, NATHAN SCHAEFER ART DIRECTOR: ADAM FREDERICKS GMHC Treatment Issues is published by GMHC, Inc. All rights reserved. Noncommercial reproduction is encouraged. GMHC Treatment Issues 446 W. 33 Street, New York, NY 10001 gmhc.org © 2011 Gay Men’s Health Crisis, Inc.
Support for GMHC Treatment Issues was made possible through charitable contributions from:
The Shelley & Donald Rubin Foundation Intracellular expression of catalytic antibodies to these proteins holds potential for early blockade of viral propagation via interference with copying viral RNA into proviral DNA and DNA integration into the host genome. Gene therapy protocols for intracellular antibody expression28 can be conceived for persistent delivery of catalytic anti-HIV antibodies. Reactivation of HIV infection can occur due to integration of the viral genome into host DNA. Drugs that deplete proviral DNA reservoirs are under investigation to address the problem of HIV latency.29 Catalytic antibodies combined with a proviral DNA-depleting drug may be suitable for consideration as an alternative therapy for the infection.
Prioritization and funding of new technology development A prophylactic vaccine and a cure for patients infected with HIV are needed urgently. However, there is considerable pessimism because of repeated clinical failure of candidate vaccines. The seemingly insoluble nature of HIV has even inspired an argument for use of the limited available funding for improved delivery of available anti-retroviral drugs to infected patients rather than further research investment. This argument is misguided. Innovative preclinical approaches are essential if the objective of eradicating HIV infection is to be met. Our positive preclinical studies using the covalent vaccination and catalytic antibody approaches are an example. These approaches were developed under basic immunology grants funded by the National Institute of Health over the past two decades. Additional developmental efforts will be necessary to obtain a standardized covalent vaccine and catalytic antibody candidates for human trials, but there
is hope for translation of the preclinical immunological advances into clinical success. In the U.S., elaborate governmental arrangements are in place to prioritize the competing developmental approaches for funding, including excellent scientiﬁc peer-review arrangements. However, programmatic allocation of funds is inspired at least in part by non-scientiﬁc reasons. The literature is replete with claims of potential clinical advances. On the other hand, most HIV vaccine development projects are likely to yield incremental advances at best. An example is the continued testing of vaccine formulations that induce immune responses primarily to mutable regions of HIV. Likewise, intensive efforts have been undertaken to identify immune markers correlating with the marginal risk reduction observed in the RV144 vaccine trial. As there is doubt whether the vaccine candidate really reduced the risk of infection, it is hard to accept that meaningful correlates of risk reduction will emerge. A policy change that forthrightly admits the limited utility of classical vaccine approaches and explicitly encourages credible, novel approaches would be a welcome event. Scientiﬁc approaches that diverge radically from established paradigms are invariably subject to rigorous peer evaluation. Independent reproduction of the evidence is usually necessary prior to widespread acceptance of the new scientiﬁc approach. These are essential safeguards against mistaken conclusions and spurious claims. Antibodies obtained by the covalent vaccine approach have been independently veriﬁed to neutralize diverse HIV strains in tissue culture. Factors that might result in artifactual neutralization have been carefully eliminated.30,31 Similarly, the chemical and immunological principles underlying antibody catalysis have been amply validated by researchers across the world. Occam’s razor is yet another safeguard against unproductive science — when confronted with alternative explanations that are equal in other respects, the hypothesis that makes the fewest novel assumptions should be selected for further study. It is necessary to invoke B cell superantigenicity as the cause of poor CD4BS immunogenicity, as no competing hypothesis explains the empirical ﬁndings adequately. Similarly, the innovation of covalent bonding of the vaccine candidate to B cells is necessary, as no alternative strategy is available to induce a robust anti-CD4BS antibody response. In summary, the preclinical scientiﬁc ﬁndings support translation research aimed at realizing the clinical utility of the technology.
Conclusion Recent immunogenicity and virus neutralization data encourages the belief that it may be possible to develop a covalent HIV vaccine that induces broadly neutralizing antibodies directed at the CD4 binding site of the virus. Catalytic antibodies to HIV appear to be a natural defense mechanism against HIV, and it may be possible to apply broadly neutralizing catalytic antibodies as an alternative therapy for HIV infection. For a full list of references, author affiliations, and conﬂict statement, please visit: gmhc.org/research/treatment-issue
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BY SUZY MARTIN
Shelter From The Storm
For people with HIV, housing can mean the difference between health and sickness.
OR FIVE YEARS, CLIFF WILLIAMS’S OFFICIAL RESIDENCE WAS THE Philadelphia shelter system. During that time, the medication he takes for depression was stolen, he worried that staff would share his HIV status as gossip, and because he had to wait for distracted workers to fetch his medication, he was late for medical appointments, in effect forcing him to choose one or the other. No wonder Williams and his doctor decided to delay starting his HIV treatment. “My viral load was steadily rising,” says Williams, an activist with ACT UP Philadelphia. “My CD4 count was 291, which was really pushing it.” Hospitalized after contracting scarlet fever in the shelters he calls “warehouses for men,” Williams watched his CD4s drop to 203. At that point, his doctor told him, “Whether you’re in the shelter system or not, it’s time for you to go on meds.” Until last September, when Williams was placed in his own apartment, he was among 8,000 HIV-positive Philadelphians in need of housing. According to research summarized by the National AIDS Housing Coalition, at least half of all people living with HIV lack stable housing at some point in their lives. Without housing, people are less likely to get timely HIV care, less likely to adhere to HIV meds and more likely to die prematurely. “The No. 1 structural barrier to people taking their meds, in my experience, has been lack of stable housing,” says Lizzy Schmidt, a nurse practitioner at the AIDS
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ser v ices organization Philadelphia FIGHT. For those crashing with friends or family, HIV stigma can block adherence. Without a home last year, ACT UP member Antonio Davis says, “I was sleeping on someone’s couch, and I had to sneak to take my medications.” Lacking a place to make meals can also hurt adherence and health. “Many meds are better tolerated and absorbed if taken with food,” Schmidt says. “So if someone doesn’t have food when they’re supposed to take their medicine, they might have more nausea or diarrhea, or the drug may not be absorbed as well.” Three years ago, Williams and his wife were on a waiting list for subsidized housing, staying in separate shelters as AIDS and cancer weakened her health. When he got in trouble for spending his public assistance money on transportation to visit her instead of on shelter fees, Williams advocated for himself by calling his city councilmember’s office— and got kicked out of the shelter. His options dwindled. He could have stayed in a freezing-cold gymnasium that allowed only four hours of sleep
With a roof over his head, Cliff Williams can manage HIV.
each night, crashed in abandoned buildings or slept on the streets. His wife finally got her turn for housing, but she died in February 2009, before they could move in. Grieving, Williams filled out the familiar paperwork yet again and waited another year and a half alone. “Living a transient lifestyle like I was, moving from place to place, you might not be able to find water, or just a private
place to hash out all these pills,” Williams says. His homeless years have taken a lasting toll. “When I was on the streets and the temperature went down to 30 degrees, it kicked my neuropathy off. Now I can’t do really cold weather, no matter how well I dress. And it added another medication [for neuropathy].” Now, in his own apartment, Williams says, “My health has improved. I take my
medicine on schedule, versus waiting in a long line or being told ‘Come back later.’ Housing gives me a base to work from.” Williams called himself a lone activist when he was penalized for advocating for himself in the shelter. Now he works with a team of activists to get people into real homes, where they can get a full night’s sleep and fight for their rights—and health—every day. ■
PERSEVERE. “When people tell you ‘No,’ be determined to find the right set of ears,” Williams says of navigating the waiting list and shelter system bureaucracy. “You have to be humble— you’re asking this person for help. They have the power.”
ears, get rowdy. ACT UP Philadelphia has mounted die-ins at City Hall, caroled outside the mayor’s house and disrupted the mayor’s budget speech with chants of “Homes Not Graves!”
HOW TO: Stay Healthy Without a Home
“Being homeless doesn’t have to prevent you from caring for your health,” says nurse practitioner Lizzy Schmidt. PLAN with your health care team and case manager. “Be honest with your doctor and figure out what works for your living situation,” says Cliff Williams, an HIV-positive activist who was once homeless. TAKE YOUR MEDS. Leave your medications at a place you can get to at the same time every day—an adult day program, your clinic, even a bus station locker. If you have a cell phone, set the alarm for your dosing time. Remind yourself that controlling HIV is a longterm goal, like getting your GED or seeing a child graduate. EAT. Ask other people where food is available. A free or cheap, well-balanced meal across town is worth the trip. Gather healthy snacks to carry. MAKE A MAP of nearby bathrooms you can use—in public buildings, malls or fast-food restaurants. In case the runs strike, carry a roll of toilet paper and some anti-diarrhea medication or calcium supplements. “Or Gummi Bears,” Schmidt says. “The gumminess actually kind of sticks the stool together.” DRINK WATER to stay hydrated. Get a plastic water bottle to refill throughout the day. Avoid soda and caffeine, and take in electrolytes—things with salt and sugar, like Kool-Aid, chicken noodle soup and Gatorade. Avoid fried or spicy food.
FIND SERENITY. “You need support like I had with ACT UP and Philadelphia FIGHT,” says Williams, who regularly took part in church and HIV education classes and joined an international website, Homelessforums.org while homeless. Find a support group and a therapist who is experienced with HIV.
Fight for Housing
In order to convince city governments to provide housing for positive people in need, you need a well-organized campaign. Here’s an example: In Philadelphia, without funding for AIDS housing, “People are dying in shelters and on the streets,” says Antonio Davis of the city’s ACT UP. The group argues that housing everyone with HIV would prevent costly hospitalizations and slow HIV’s spread. Eighty medical and public health professionals agree (see housingistreatment.org ). At a meeting last November, Philadelphia Mayor Michael Nutter apologized to ACT UP member Carla Fields for the shelter conditions that hurt her health. “I don’t want your apology,” Fields replied. “I want you to end the waiting list!” To mount a campaign, Davis says, build coalitions of supporters; know your facts and create slogans that state your demands clearly; and request meetings with government officials. If your work falls on deaf governmental
Find a Group to Act Up With
Voices Of Community Activists & Leaders (VOCAL), New York City vocal-ny.org Works to stop the city’s AIDS housing program from charging people more than 30 percent of their income for their rent. Housing Works, New York City housingworks.org Is largely responsible for the city’s law guaranteeing housing to poor PWAs. AIDS Action in Mississippi 601.944.1403 Pushes for supportive housing from the state health department for PWAs. DC Fights Back, dcfightsback.org Uses street protests to fight for housing and shelters in the city. AIDS Foundation of Chicago aidschicago.org/housing Fights for housing access. AIDS Housing Alliance, San Francisco aidshousingalliancesf.org Provides housing, defends rent control, pushes AIDS organizations to hire disabled PWAs to prevent homelessness. No group near you? The National AIDS Housing Coalition’s Policy Toolkit can help you start the fight: Find it at: nationalaidshousing.org/policy-toolkit.
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BY LAURA WHITEHORN
The Latest on Lubes and Gel
HIV Meds Played Out? Deal Again. If you have lived with HIV for a long time and have exhausted various med combos in the past, there are still options. Here are a few: ●
Combine three newer meds: Prezista (darunavir, boosted with Norvir) plus Intelence (etravirine) and Isentress (raltegravir), when combined with other drugs the virus may be sensitive to, suppressed HIV for some people whose HIV combos had stopped working. Most of the group still registered undetectable viral loads after two years. Add an experimental drug: Dolutegravir (S/GSK-572) is an integrase inhibitor—a drug that prevents HIV from hijacking the genetic material in your body’s cells to reproduce. In a complete HIV regimen and taken twice a day, dolutegravir allowed some long-termers to knock HIV to undetectable levels. Add Reyataz (atazanavir) or Invirase (saquinavir) to your combo: This helped some people who had previously taken the protease inhibitors Kaletra (lopinavir/ritonavir), Lexiva (fosamprenavir) or Agenerase (amprenavir).
28 POZ JUNE 2011 poz.com
A vaginal gel may also work as a form of HIV prevention for anal sex. The gel, a microbicide, contains an HIV drug (tenofovir, used in Atripla, Viread and Truvada). In large international trials, the gel gave women some vaginal protection against HIV (women using the gel were 39 percent less likely to contract HIV). The gel was hard on rectal tissue, but researchers are remaking it to fix that problem, aiming to produce a safe, effective anal microbicide for use by all sexes. When asked whether they’d choose an oral drug or a gel to prevent HIV, 72 percent of U.S. women said they’d rather swallow than smear. Buyer beware: Some lubes damage anal tissue and could make it easier to get HIV. Like the gel we mentioned before, some lubes seem to dry rectal cells or cause them to burst, damaging the tissue-thin protective layer. If used for anal sex without condoms, these gels could raise the risk of contracting HIV.
When choosing a lube for use without—or preferably with— a condom, consider avoiding those that contain polyquaternium. In studies, lubes containing this chemical caused the damage to the anal tissue. For more information, search “Lube Alert” at poz.com
(CARDS) GETTY IMAGES/DAVID EMMITE; (GEL) ISTOCKPHOTO.COM/LISE GAGNE
CURE WATCH: Therapeutic Vaccines
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Many studies have shown that taking a break from your HIV meds can harm your health. The latest evidence arrived in February 2011. The results of a seven-year Swiss study showed again that people who went on and off their meds had more illnesses and a greater chance of dying than those who stayed on their combo. If the daily grind of taking meds is wearing you down, ask your clinic or doctor to help, maybe by introducing you to an adherence counselor— or a regimen you can stick with.
Researchers are studying a slew of experimental therapies in hopes of clearing HIV from the body once and for all. One is the DermaVir patch, a therapeutic vaccine that doesn’t protect negative people from acquiring HIV, but boosts the body’s natural ability to fight HIV once a person has contracted it. The DermaVir patch sends medicine through the skin into the body to mimic parts of HIV and trick your immune cells into controlling the virus. The hope is that therapies like DermaVir will make it possible for people to control HIV without taking meds every day. For more information or to join a trial, search DermaVir on the web at clinicaltrials.gov.
Dousing the Flames You know how bad you feel when you’re getting a cold? Achy, feverish, tired…just plain lousy. That’s your immune system at work, fighting infection. It’s all good if that reaction—a.k.a. inflammation or immune activation—stops when the infection is beaten or has run its course. But if inflammation continues, it can upset your body’s normal functioning. Tests show that inflammation persists with HIV (even when the virus is undetectable). And the inflammation can be harmful. For example, it seems inflammation is partly responsible for the increased risk of heart disease, cancers and bone loss HIV-positive people experience. So it’s good news that researchers are testing drugs to calm the inflammatory response generated by HIV. One that seems to work is a drug called Plaquenil (hydroxychloroquine). It’s already approved to treat malaria and the autoimmune diseases lupus and rheumatoid arthritis. Next stop perhaps: HIV.
Point, Shoot, Reveal
Living with HIV involves more than taking meds. But sometimes it’s hard to figure out how to talk about the ins and outs of daily life with your health care team. Taking photos can help sort out what is helping—and hurting—your health from day to day. Michelle Teti, a social worker, gave cameras to a group of HIV-positive women in Missouri and asked them to bring back snapshots of their lives. “The idea,” Teti says, “is to use photography and discussion to identify and problem-solve health needs.” Teti describes how it works. “One woman took pictures of her flooded basement and broken-down refrigerator and used the pictures to help her advocate for better housing,” she says. Others shot photos to boost their self-images as women with HIV. See the problem, solve the problem.
poz.com JUNE 2011 POZ 29
Join the world’s leading independent association of HIV/AIDS professionals with over 16,000 members in 196 countries. We connect. By convening the world’s foremost international conferences on HIV and AIDS and specialized meetings, we provide critical platforms for presenting new research, promoting dialogue and building consensus to advance the global fight against HIV. We promote. By promoting dialogue, education and networking, and providing access to best practice, professional development and skills building, we help build capacity and close gaps in knowledge and expertise at every level of the HIV response. We mobilize. By advocating for the right to an evidence-based response to HIV and for a concerted research effort to build that evidence base, we contribute to continuous improvement of the global response to HIV.
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May 21, 2011 Vienna City Hall Vienna, Austria www.lifeball.org
BY CRISTINA GONZÁLEZ
Five Relaxation Tips 1. JUST BREATHE. In the few minutes it takes you to mail a bill or load the dishwasher, you can take a couple of deep breaths instead. Breathing exercises can instantly calm the mind and body by changing blood pH and blood pressure. They can also help train the body to react to stressful situations in a safe way. So take several long, meaningful breaths and relax.
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GETTY IMAGES/STEVE COLE
Bubbles, Bath and Beyond
First, set the mood by lighting some candles. Grab still-warm towels from the dryer. Place an inflatable bath pillow, a crossword puzzle and a good book within arm’s reach. Turn on the slow jams or that jazz CD you’ve been meaning to check out. Now you’re ready to slip everything off, slide into a bubble bath and let your worries melt away. A bubble bath is a simple and luxurious way to calm your mind and nourish your spirit. Instead of hopping into the shower and mulling over the evening’s to-do list while your hands rush to lather, rinse and dry yourself—stop. Slow down. And transform a bath into a deliberate, calming, replenishing and renewing experience. Calgon, take our cares of HIV away.
2. GET MOVING. Go for a run, take a lap in the pool or start a dance party in your living room. Studies have shown that even 15 minutes of physical activity, just three times a week, is enough for you to feel the good vibes. 3. GET CREATIVE. Express what’s on your mind or in your heart with a poem, song, painting, sculpture, crafts. The steady process of creation can quiet loud, nagging worries and help you tap into different sides of yourself. No judgments, no deadlines. Just relax. 4. GO AHEAD AND GIGGLE. Laughter may not cure everything that ails you, but among its numerous health benefits are the abilities to soothe tension, stimulate circulation and help muscles relax—all of which calm you down. You’ll feel better. No joke. 5. TREAT YOURSELF. Crack open a bottle of wine, bite into that bar of chocolate, or splurge for a 10-minute massage. Give yourself permission to indulge, just a little bit, and feel the stress slip away and the relaxation settle in.
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Patient No More
Timothy Brown—a.k.a. “the Berlin Patient”—is the Man Who Once Had HIV. Recovered from a deadly form of leukemia and now virus-free, Brown embodies the hopes of scientists and millions of people living with the virus. Brown’s road to a cure is unlikely to be traveled by others. But his journey provides critical proof of a concept that just may lead to the end of AIDS—by offering clues for how to develop a safe, affordable cure for all.
BY REGAN HOFMANN
O WALK PAST TIMOTHY BROWN on the street, you’d hardly know that his body contains secrets capable of ending one of the worst plagues in recorded human history. But Brown, the man known as “the Berlin Patient,” is arguably scientific proof that we can cure AIDS. The Berlin Patient is not a German, but rather, an American whose life was saved, ironically, by a German living in America. Brown is a 45-year-old man originally from Seattle who moved to Berlin in 1991. It was in that famed European center of upheaval that he discovered, in 1995, he was living with HIV and where he was diagnosed with acute myeloid leukemia (AML) in 2004. Multiple treatments for his AML, including chemotherapy and two stem cell transplants (using cells harvested from the German donor), have allowed him to survive against unthinkable odds—and to be cured of HIV. Brown might not be alive and he certainly wouldn’t be HIV-free had his path not crossed that of Gero Huetter, MD, a German hematologist at the University Medicine Berlin. Huetter had the foresight, when administering a stem cell transplant to Brown to cure his AML, to try injecting stem cells harvested from a donor who had a certain genetic mutation that made his immune system impervious to HIV. HIV uses the cells of the immune system Timothy with in its replication process. If it can’t enter the Brown his friend’s immune cells, it can’t survive. Huetter’s theory dog Jack
was that if you took all the immune cells out of a person living with HIV and replaced them with immune cells that couldn’t be infected with the virus, then HIV could be eradicated. Huetter was right; Brown is the first person to have HIV cleared from his body. But while the process Brown endured cannot be universally applied, Brown’s case taught scientists much about how HIV works and how to produce a similar outcome without the risks of a stem cell transplant. Which is why after four years of being known anonymously as the Berlin Patient, Brown has come forward to talk about the importance of finding a cure for AIDS. When we first spoke (when he was still in Germany, about six months ago), Brown was understandably concerned about stepping into the spotlight. He has no desire for fame and wants nothing more than to get on with a regular life. But he also wants people to pay attention to and accurately understand the scientific insight gleaned from his case—insight that could lead to a cure for the millions of us who are not HIVfree. Brown knows the misperception that a cure has already been found would devastate efforts to raise funds for cure research, and he expressed concern about the recent press coverage of his case. Too many media outlets oversimplified his story, which he fears could lead to false hope for HIVpositive people. And too few highlighted the exciting research that has since sprung from what was learned in his case, research that is ready for fast tracking and human trials but that lacks necessary funding. (For a highlight of this research, read “From Mice to Men,” POZ October/November 2010.)
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s a young man, Brown decided, after a brief stint in college, to head to Europe. Landing in Barcelona, he traveled with friends to Berlin, where he met another young man and fell in love. Just days after Brown returned to Spain, his boyfriend joined him. But roommate squabbles drove the couple back to Germany. Berlin’s architecture entranced Brown, who worked at Café Adler, near Checkpoint Charlie, the best-known Berlin Wall crossing point between East and West Berlin. During the Cold War, the famous café was frequented by journalists who covered the historic fall of the wall in 1989. “Berlin was really beautiful, particularly after the wall came down and the country was reunited,” Brown says in a voice that is somewhat halting as he is still recovering from neurological damage from his extensive treatment. “I liked the fact that there weren’t lots of police in Berlin. It was a free-for-all.” The nightlife reflected this. And Brown was caught up in the pervasive feeling of newfound freedom. Young, in love, and living in a city that embodied a new openness, Brown lived, worked and played hard. “I remember one disco in particular. There was so much fog from the fog machines that you couldn’t see the person next to you. It was like dancing in space.” But his days of carefree joy ended abruptly one day in 2004 while riding to work on his bike. Brown was suddenly overcome with fatigue. He arrived at work late, and when he went out again at lunch on his bike, he had to stop, sit on a park bench and call his partner to come get him. “I knew something was really wrong,” he said. Brown was also on treatment for HIV but had no health issues resulting from the virus. The first doctor Brown visited did blood work and sent him to an oncologist who did a bone marrow test and determined Brown had AML. That doctor sent Brown to the hospital where he met Dr. Gero Huetter. From that point forward, Brown found himself engaged in
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a series of painful and dangerous treatments. He received chemotherapy, which initially kept the cancer at bay. But when it returned, Huetter recommended a stem cell transplant. There were more than 100 genetically compatible donor candidates—a very unusual thing—so Huetter wondered if he could attempt to cure not only Brown’s AML but also his HIV. Huetter thought that rather than simply injecting regular stem cells to fight the AML, he could hunt down a donor who had a particular genetic mutation, called the “CCR5 delta-32 deletion.” This genetic “defect” (in this case, an advantage) causes a body to produce CD4 immune cells that lack a receptor known as CCR5. In order to bind to the CD4 cells of the immune system, enter them and replicate, most strains of HIV must find two receptors on the surface of the cell: CD4 and CCR5. No CCR5 receptor? Then no docking and no HIV replication. (Though some strains of HIV can bind to CD4 and another receptor, CXCR4, Brown’s virus was using CCR5 to infect his cells.) Huetter’s plan was to replace all of Brown’s immune cells with ones that would cure him of AML and stop HIV replication—thus curing him of HIV. Brown had little to lose by being a guinea pig. He might not survive the treatment, but he certainly wouldn’t survive without it. There was no additional risk to the experimental stem cell treatment and, if it worked, Brown could potentially recover from two lifethreatening conditions. Of the decision, Brown said, “I wasn’t really worried about my HIV. I was worried about the cancer.” It didn’t really sink in that his survival could be linked to that of tens of millions of others. Huetter found a donor with the double CCR5 delta-32 deletion (the genetic mutation is inherited, and when it’s inherited from both parents, it’s considered a double deletion and makes the person immune to HIV) and set up the transplant. To prepare Brown’s body to receive the new stem cells, Huetter administered massive chemotherapy to wipe out Brown’s existing immune system. Devoid of an immune system for several weeks while waiting for the transplant, Brown faced considerable risk of contracting a deadly infection. There was also the risk that his body would not accept the donor cells. But he survived the transition period and the transplant, and Brown’s health began to return. But, 13 months later, the AML returned and Brown underwent a second transplant with the delta-32-deleted stem cells.
Brown also wants the world to know that what he went through, and is still recovering from, is not something he’d wish on his worst enemy. A stem cell transplant like Brown’s presents many challenges: finding the right donor, a $250,000+ price tag and the possibility of massive infection—and death. Brown paid dearly for his survival with physical and emotional stress and some enduring side effects. Thankfully, he is moving slowly, and steadily, back to a place of good health.
Brown’s mother Sharon flew repeatedly from America to sit beside him while he endured the procedures. Brown never knew his father, so his mom and his now ex-partner were his support team. “It’s really important to have emotional support when going through things like this,” he says. “Especially with HIV since the stigma is so bad. You need people to put their arms around you and tell you they love you.” Brown’s former partner cared for him throughout his treatment—for four years. The fact that the AML returned resulted in a much longer recovery. “I couldn’t walk and had to wear diapers,” Brown says. “I was very incontinent so my partner had to clean up after me a lot. “I’m very appreciative of that, but he got another relationship and he didn’t want to continue to [take care of me] anymore,” Brown says. “There was talk of whether or not I’d have to go to a [nursing] home. I didn’t want to do that. I visited a couple. One really shocked me. The people were much worse off than me.” Faced with a choice of going into a home or trying to take care of himself, which he couldn’t do, Brown decided to come back to the United States.
ews of Brown’s astounding duel r e co ve r y w a s first shared at the 15th annual Conference for Retroviruses and O p p o r t u n i s t ic I n f e c t ion s (CROI) in Boston in 2008. Interest i ng ly, ver y few people noticed the potentially world-changing poster hanging at the far end of the exhibit hall. The story of the first man potentially cured of AIDS barely made a ripple in the scientific community, let alone the global press. Early news of Brown’s cure was cautiously mentioned in a few medical journals—and in POZ and on AIDSmeds. Though the data were astounding, there was talk about whether residual HIV, particularly a form of the virus that targets the CXCR4 receptor, hiding in reservoirs in Brown’s body could emerge and replicate. And then there was the question of whether or not the procedure could, or should, ever be replicated in people with HIV who were not facing lifethreatening cancers such as leukemia and lymphoma. Few were sure how Brown’s case would influence scientists’ ability to develop a cure that could be had by all. It wasn’t until December 8 of 2010 when the medical journal Blood reported that Brown had been free of HIV medicines for three and a half years while maintaining normal CD4 counts—and still had no trace of HIV—that word spread more widely that a man had apparently been cured of HIV. The article in Blood reported that the team monitoring the patient said, “Our results strongly suggest that cure of HIV has been achieved in this patient.” And yet, the news remained cautiously optimistic. Several false starts for an AIDS cure have led the scientific and investment communities, the government and the media to be extremely wary of focusing on or discussing an AIDS cure. Until the case of the Berlin Patient, the word “cure” was
uttered by few in the last 15 years. The widespread suspicion that an AIDS cure is not possible has led to a focus on developing and refining prevention and treatment protocols. Further undermining the focus on the cure is the grave misconception that modern treatments have rendered HIV a “manageable” condition and as a result a cure is less needed. This is a misconception because the drugs remain toxic with debilitating side effects and long-term health risks, and because HIV itself causes health problems long term. Funding for cure research has suffered greatly from these misconceptions. Few people are aware that AIDS science is poised on the brink of a breakthrough. For proof of the disbelief in an AIDS cure, consider that in 2010, Time magazine named “PrEP,” or pre-exposure prophylaxis, which is the practice of taking existing HIV drugs to prevent infection, as the No. 1 medical breakthrough of the year—the same year in which a man had been cured of HIV. Brown hopes coming forward will help change this. He has helped enough in offering his body as a proving ground for a concept that opened scientific horizons. But amazingly, he
Until the case of the Berlin Patient, the word “cure” was uttered by few in the last 15 years. doesn’t want to stop there. He wants to be a public advocate for an increased focus on—and more funding for—the cure for AIDS.
oday, Brown lives in San Francisco with some wonderfully supportive friends. He is looking for a doctor, and to form a new life. It’s not easy to know whom to call for medical help. An oncologist? An infectious disease specialist? He no longer has cancer, and he no longer has HIV. But as his body heals from years of living with the virus and battling cancer and enduring life-threatening treatment, he needs medical and emotional support. Brown has started to work out at home with the help of an exercise video. He is trying to regain his strength, and weight, drinking lots of protein shakes (“My favorite is hazelnut,” he says). He’d like to resume work as a translator or go to law school. When asked what it feels like to be leukemia-free and to be the first person cured of HIV, he smiles, slowly, almost as if he doesn’t believe his own story, and says, “It’s really great. I hope what I’ve gone through will help lots of people.” I get the sense that it’s strange for him, after his many brushes with death, to consider how to rebuild his life. Like for so many of us with HIV who thought we’d die, the future feels delicate. But for the moment, his heightened appreciation for life enables Brown to enjoy the small and simple things. Like a dog on his lap, and the warm California sun on his face. ■
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June 5, 2011, marks 30 years since the ﬁrst published accounts of what became known as AIDS. The history of AIDS entails the excruciating loss of more than 25 million lives globally. But it also offers the powerful survival tales of many who returned from the brink of death to inspire, protect and advocate for others. Survival involves many issues: how quickly you learn your status after contracting HIV; whether you can get, afford, tolerate and keep taking meds (if needed); whether you have emotional support, safe housing and help dealing with substance use (if needed); empowerment and enlightenment about health care; and an enduring will. For this 30th anniversary, we asked 31 long-term survivors who’ve appeared in POZ what moves and sustains them and whether they think they’ll live to see a cure. Here is a sampling of their sage advice. Read their complete responses on “30 Years of AIDS” at poz.com/30 Each person here is equally wise and wonderful—they appear in no particular order. Why 31? One for each year, and one more for good luck. May we all survive together to see the end of AIDS!
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Innovator, rule-breaker, POZ founder, senior adviser to the Positive Justice Project, HIV criminalization fighter, positive for 31 years. The best advice I ever got was, “Be skeptical, especially of anything presented as beyond question. Seek health as an ongoing journey, not a destination.” Overcoming stigma is a challenge that never ends, and for those trapped in disenfranchising burdens like racism, poverty, addiction, incarceration and mental illness, it’s much more difficult. To someone just testing positive, I’d say, “Study. Fall in love. Be of service. Be kind to all.” ROBERT CHODO CAMPBELL Buddhist counselor, peacemaker, cofounder of New York City’s Zen Center for Contemplative Care, positive for 28 years. The best thing anyone’s said since I tested positive is, “You look fabulous.” An HIV treatment advance was that I stopped taking Zerit and halted the progress of facial wasting. My refuge is the knowledge that everything is impermanent, including my virus. It is constantly changing, as am I. My advice? Never ever ever feel less than the person standing next to you.
DAB GARNER Teddy bear–tender (creator of Dab the AIDS Bear Project), positive for 29 years. At the end of the movie Longtime Companion, all your friends who died from AIDS complications show back up on the beach. I still cry every time I watch it. It would be a dream come true to have all of my friends back again. If a cure is found in my lifetime, I would benefit—no more costly medications every day. But the greatest gift would be knowing no one else would have to die from AIDS.
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KIM HUNTER Manager of the Office for Women’s Health at New Jersey’s Hyacinth AIDS Foundation, ex-prisoner, freestyle cruiser, positive for 25 years. Accepting my HIV has often been the deciding factor in my treatment compliance. I am grateful that the worst, early days of this epidemic are gone. The quality of my life has improved because of my commitment to taking my meds. When I got my diagnosis, I had no idea I’d be around to tell you this today. For anyone afraid of having tested positive, I say, “Just follow me.”
SYLVIA YOUNG Woman of the WORLD (peer advocate program manager at Women Organized to Respond to Life-threatening Disease), positive for 16 years. My refuge is music. I go with my husband, a guitarist who plays R&B, jazz and rock, to gigs—and I dance. My challenge is fatigue. I’ve had to learn not to overextend myself. My family has aided my survival the most—my daughters, grandson and of course my husband. From them I have never encountered a bit of stigma. I tell newly diagnosed people, “Forgive yourself.”
STACEY LATIMER Gay minister (Love Alive International Sanctuary of Praise NYC), believer, positive for 24 years. My major economic challenge has been recovering from the “last days” mentality. Living as if there was no tomorrow created a financial nightmare. Facing reality was the curse that tagged along with the blessing of survival. My faith is my refuge. The Creator has already surpassed so many of my expectations over the last 30 years—a cure in my lifetime seems a small milestone for the Spirit. SHARON WAGNER Mother and grandmother, churchgoer, cancer survivor, positive for 24 years. The most helpful thing anyone has said is, “Take your medicine and stay positive.” I don’t think I will see a cure in my lifetime, and if I do, I won’t benefit from it—I’ve had HIV too long. My advice to anyone who tests positive is, “Get all the information, see a good doctor, change your lifestyle, eat right, exercise, and if you choose to go on HIV meds, be consistent in taking them.”
BAMBY SALCEDO Mexicana immigrant, transgender warrior, coordinator of the Children’s Hospital L.A. transgender youth program, positive for 16 years. Someone told me, “If you let having HIV make you depressed, it will kill you. Ignore the negative stuff about your disease and don’t let HIV stop you from being who you are.” We are beautiful the way we are. Change is good—it’s just hard to understand. Being positive is just a change in our lives. Helping in my community, bringing trans issues to the fore, sustains me.
PETER STALEY AIDSmeds founder, crystal-kicker, ex-Wall Streeter, positive for 28 years. Shortly after my diagnosis, I told my closest friend and former piano teacher the news. After a long pause, he said, “Well, OK then, will you leave me your grand piano?” A sense of humor can add years to your life. I tell newly diagnosed people not to live in an HIV closet. While it might help prevent some hard moments, it’s a form of self-loathing that will keep you from living life to the fullest.
JANE FOWLER Graceful and gracious voice of HIV over 50, founder, HIV Wisdom for Older Women, positive for 25 years. After my HIV diagnosis, I spent four years in semi-isolation. Then my son said, “You’re positive, so do something positive,” urging me into the role that has empowered me— public speaker on HIV/AIDS. I’m a fanatic reader of biographies. It’s useful to be reminded that all people face obstacles and endure setbacks. I’ll turn 76 in July. If we have to wait another 30 years for a cure, I won’t live to see it. www.poz.com JUNE 2011 POZ 39
FRED HERSCH Jazz pianist and composer, coma survivor, AIDS fund-raiser, positive for 25 years. I’ve been on “salvage therapy” for many years. Fortunately, new drugs came along each time I was crashing on a regimen. My CD4 count hasn’t been above 200 for years, but my virus is undetectable—HIV and I are at a standoff. Being out as gay and positive helps me overcome stigma. Jazz has a rep for being macho and homophobic, but when I was near death in 2008, the whole jazz community was caring and supportive.
LOREEN WILLENBERG HIV controller, former landscaper who started the Zephyr Foundation to promote controller studies, positive for 19 years. It’s hard to fathom where my life would have gone if HIV hadn’t found me. In 1995, my physician said, “One of these days, scientists are going to want to study you, because your immune system holds back this infection.” I have more hope than ever for a cure in my lifetime. The benefit to me will be gratitude that I was able to make a small mall difference by participating in studies of HIV controllers ollers and nonprogressors.
HYDEIA BROADBENT NT HIV’s knock-your-socks-off off baby girl, award-winning public c speaker, positive for 27 years (her whole life). At birth, the doctors told my parents I wouldn’t make it past the e age of 5. Then I had to take 35 to 50 pills a day, or wear a pump all day y because I couldn’t take medicines by mouth. Now I only take nine pills a day, and HIV-positive women can an have negative babies! Growing ing up I worried about not being able ble to be a mother. My economic challenge: hallenge: meeting the requirements s to keep my state-subsidized health alth care. 40 POZ JUNE 2011 www.poz.com
LISA TIGER Muscogee Nation role model, speaker, mom and adopter of abused kids, positive for 23 years. In 1992 my doctor said, “If you want children, don’t let HIV stop you.” I now have three. My refuge from HIV (and Parkinson’s disease) is running—at least a mile every day for more than four years. I post it on Facebook, and people write, “If you can do it with AIDS and Parkinson’s, then I have no excuse.” Time is precious. Spend it making plans for your fabulous future.
MECHELLE JONES Crack-habit code cracker, inspirer, admissions coordinator for HELP/PSI in the Bronx, New York, positive for 16 years. When I tested positive, someone told me, “You are a fighter. You will rise above HIV/AIDS.” My refuge is God; my children are my biggest supporters. It’s important to express your feelings, bad as well as good, but to have people in your life who won’t let you stay stuck on a bad feeling. My job helping others dealing with AIDS and drug abuse is a blessing.
LARRY BRYANT Rebel rouser, former all-star footballer, Housing Works’ national field organizer, positive for 25 years. Trust and acceptance from my family and friends defined my survival. The stigma I impose on myself is most damaging and damning. I have self-destructed in the face of close friendships because of my own fear. As important as it is to find a cure, it’s equally important to identify strategies to address homelessness, poverty, homophobia and sexual violence. A cure will be needless if these persist—we will just sit and wait for the next epidemic.
SHAWN DECKER Positoid rock star, educator and author (My Pet Virus), POZ blogger, positive for 25 years. When I was diagnosed at age 11, my uncle said, “Don’t let the bastards get you down.” For me, well-designed treatment interruptions (one week on, one off) boost energy without letting HIV mount an assault. Playing and writing music with my band, Synthetic Division, offers a change from speaking on sexual health and HIV. My soul medicine is my loving negatoid partner, Gwenn. Love yourself and let HIV weed poisonous people from your life.
DAVID LEE Welcoming shoulder and master of social work at Culturally Compassionate Counseling, positive for 16 years. The words that have helped me most came from my own mouth: “I got HIV being a human being doing human things.” Knowledge has helped my survival, and having great friends has helped me emotionally. I’m not concerned about a cure, because I believe I’ll live a normal life with the treatments already available.
SUSAN RODRIGUEZ SMART starter (founder, SMART University, New York City), positive for 16 years. Side effects and aging are challenging, but at least I’m alive to deal with them. Walking my greyhound Ollie and carrying my little Chihuahua Mork in Central Park or along the East River clears my head. Keeping the doors open at my HIV/AIDS organization, SMART University, presents my economic challenge.
TRACY BRUCE Georgia peach of a mom and grandmother, HIV prevention specialist, positive for 26 years. preven I feel the world passed me by while I struggled to contro control HIV. After 15 years on disability, the insurance company said I should work insur full-time. But fatigue and the economy proved full-time them wrong. wr My drive to see my children grow to adulthood adul aided my survival. If a cure is found, I won’t know whether to be elated (for all of us living with HIV) or depressed that my husband isn’t alive to benefit. www.poz.com JUNE 2011 POZ 41
LATRISCHA MILES Champion adherence counselor (at the Kansas City Free Health Clinic), positive for 16 years. Early on, I refused to leave my doctor’s office until he answered all my questions about my regimen. He did, and he directed me to more information (and to my first copy of POZ so I could self-educate). I speak at organizations, schools and churches. Stigma is often the fear of the unknown— dispelled when we talk about it.
JORGE DELGADO Impassioned and empowered minister, HIV/AIDS ministry director at Metropolitan Community Church in DC, positive for 23 years. In 30 years, nearly 30 million people around the world have died. Medical advances have changed my death sentence to a more treatable longterm disease. My challenge has been the countless thousands of dollars spent on deductibles for doctors and meds. My faith has helped me deal with the anxiety and depression that can affect those of us with HIV.
JACK MACKENROTH Project Runway contestant, advocate and athlete, positive for 22 years. When I was diagnosed, I expected to be dead at 25. As treatments improved, so did I. For refuge, I swim competitively with Team New York Aquatics and design fashion, write and make art. If there were a cure in my lifetime—I’m not counting on it—it would be odd because HIV has become such an integrated part of my life. But I’d be more than happy to let it go.
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TOM DUANE Openly gay and HIV-positive New York State Senator, community champion and hero, positive for 30 years. Along with loving family and friends, every positive person I have met—closeted or not—who has whispered “thank you” to me for being open about my HIV has helped me survive. Mental health services aid my health; recovery programs are my refuge. Maintaining health insurance is a challenge. As a male, Caucasian elected official, my experience with stigma can’t begin to compare with what others face every day. I tell those newly diagnosed, “Keep working to stop others from becoming positive.”
ERIC SAWYER Ambassador of activism, UNAIDS adviser, cofounder of ACT UP New York and Health GAP, positive for 30 years. What’s allowed me to live is deciding to manage my health in partnership with my doctor, not as a passive patient. We need a renewed demand for cure research on the global agenda. Cure in my lifetime? I’m skeptical. Too many pharma companies make too much money keeping HIV-positive people relatively healthy. I tell newly diagnosed people, “Manage your health so you can live a normal life span. And have a lot of great sex—it gives you something to live for!”
LINDA SCRUGGS Program director, AIDS Alliance for Children, Youth and Families, survivor of incest, sexual abuse and cocaine, positive for 21 years. I was on 15 pills a day, then eight or 10, and I had trouble taking them. In 2004, a doctor asked, “If I can find a regimen of three or four pills will you take them?” I committed to that combo, and now, seven years later, my CD4 count is above 900. I wish I could afford dental care to make my smile as beautiful as I feel my life is today.
MONICA JOHNSON One of our favorite HEROES (she founded Helping Everyone Receive Ongoing Effective Support in Columbia, Louisiana), positive for 27 years. I know a college degree and career are useless if you can’t get health insurance. Too many people with HIV are forced to live below poverty level in order to have affordable treatment options through government programs. Saying, “I don’t have time or T-cells to waste” keeps me grounded. It helps me decide quickly if something is worth the hassle.
IMANI HARRINGTON HIV drama-writing queen (Bitter Fruit, for example), positive for 26 years. Socially responsible designers and artists inspire me. I think I will see a cure—with science and biology, the natural world might surprise us. We should dream. I would tell someone newly diagnosed with HIV, “Find what gives you meaning. Can you see this working for you even when it might not seem to be? Can you accept life as you have been born into it?”
DAWN AVERITT BRIDGE The Well Project founder, mother (her older daughter was POZ’s first cover baby, celebrating an HIV-negative birth), positive for 23 years. Someone said, “HIV isn’t the death sentence you think, so don’t rob a bank—you’ll likely be here to pay for it!” The rest of the world grossly underestimates the challenges of getting meds and staying on them (all the time!). My daughters are my refuge—amazing little people, the children I was never going to have because of HIV.
GREG LOUGANIS Diving board Olympian, trainer of divers and dogs, positive for 23 years. My challenge has been sponsors pulling support because they didn’t think I’d live this long. Yoga helps me maintain physical, emotional and mental flexibility and a positive outlook. What I’d say to a newly diagnosed person? “You idiot, what were you thinking!!!” No, really, “Just take a breath, take responsibility, live your life with passion.”
MARY FISHER Artist, world-rocker (her speech at the 1992 Republican Convention broke the don’t-say-AIDS barrier), energetic educator, positive for 20 years. My treatment advance was learning to listen to my doctor and finding a doctor who listens to me. Stigma isn’t a knife that slashes through your throat; it’s more like someone rubbing sandpaper on your skin, wearing off your resistance. I tell newly positive people, “You now have a chance to start your life over on much better terms than you had before.” The irony is, it’s true.
PHOTOS: (1) NEIL RASMUS; (2) BILL WADMAN; (3) CHRISTIAN GIANELLI; (5) JENSEN HANDE; (6) CLAY PATRICK MCBRIDE; (7) FELIX SANCHEZ; (9) DEAN KAUFMAN; (10) SCOTT PASFIELD; (11) DAVID BARTOLOMI; (12) STEVE MORRISON; (16) ANDREW MCLEOD; (18) CHARLES LEDFORD; (22) STEVE MORRISON; (23) ERIC SUMBERG; (25) CLAY PATRICK MCBRIDE; (26) HECTOR EMANUEL; (30) WIREIMAGE/BARRY KING; (31) UNAIDS/W. LEE; (ALL OTHERS COURTESY OF SUBJECTS)
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Remembering Elizabeth Taylor 1932–2011
Dame Elizabeth Taylor will be remembered for many things. Her award-winning films, her numerous husbands, her fabulous diamonds. But her most important legacy might be her contributions to the fight against HIV/AIDS. At the beginning of the epidemic, when few people (especially celebrities) dared to speak on behalf of people living with the virus, Taylor brought national attention to the growing epidemic. She cofounded the Foundation for AIDS Research
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(amfAR) and the Elizabeth Taylor AIDS Foundation and raised millions of dollars for the cause. Taylor leveraged her celebrity, beauty and fame to educate the world. “It’s bad enough that people are dying of AIDS,” she once said, “but no one should die of ignorance.” Her awareness efforts led to lifesaving treatments and greater compassion toward people living with HIV/AIDS. May her passion inspire us as we continue to fight ignorance and search for a cure for AIDS.
SURVEY HIV and Advocacy
Since the beginning of the epidemic, HIV-positive people have been advocating for their health. Standing up for your rights can make a big difference in your own life as well as the lives of millions of other people living with the virus. POZ wants to hear about your relationship to AIDS advocacy.
Are you HIV positive?
❑ Yes 2
Do you consider yourself an HIV/AIDS advocate?
❑ Yes 3
❑ No ❑ No
Have you ever been involved in HIV/AIDS advocacy efforts? (Check all that apply.)
❑ Yes, locally ❑ Yes, in my state ❑ Yes, nationally ❑ Yes, internationally ❑ No 4
❑ Yes 11
Have you ever done any of the following? (Check all that apply.) government regarding HIV/AIDS issues or policies
❑ Been involved in an HIV/AIDS demonstration or protest ❑ Joined a national HIV/AIDS organization ❑ Donated and/or raised money for an HIV/AIDS charity ❑ Participated in an AIDS walk or bike ride ❑ Other (please specify): Do you believe individuals can make a difference through HIV/AIDS advocacy?
❑ Yes 6
❑ I don’t know
If you have not been involved in HIV/AIDS advocacy efforts, why not? (Check all that apply.)
❑ I don’t think community advocacy is effective ❑ I don’t have the time ❑ I am not out about my HIV status ❑ I don’t know what to do ❑ I can’t afford to ❑ Other (please specify):
What year were you born? _____
What is your gender?
❑ Male ❑ Transgender 14
❑ No ❑ No
Will HIV budget cuts make you less likely to vote for Obama?
❑ Gay/lesbian ❑ Other
What is your ethnicity? (Check all that apply.)
❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other (please specify): ________________
If so, do you think it will make a difference?
❑ Female ❑ Other
What is your sexual orientation?
❑ Straight ❑ Bisexual
Have you ever heard about the National HIV/AIDS Strategy (NHAS)?
Which of the following national AIDS advocacy groups have you heard of? (Check all that apply.)
❑ AIDS Alliance for Children, Youth and Families ❑ AIDS Foundation of Chicago (AFC) ❑ AIDS Healthcare Foundation (AHF) ❑ AIDS Project Los Angeles (APLA) ❑ AIDS United ❑ The Black AIDS Institute ❑ The Foundation for AIDS Research (amfAR) ❑ Gay Men’s Health Crisis (GMHC) ❑ Housing Works ❑ Latino Commission on AIDS ❑ The National Association of People With AIDS (NAPWA) ❑ National Minority AIDS Council (NMAC) ❑ San Francisco AIDS Foundation (SFAF)
❑ Contacted a representative of your local, state or federal
Have you ever visited AIDS.gov?
What is your ZIP code? ________________
Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #172, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424