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30 R.I.P. HIV Thirty years after people first started dying from a then-unknown virus, we face a tipping point in AIDS history. The world’s leading scientists say the end of AIDS is possible, maybe even in our lifetime. Now, the question is: How can the world seize this moment and lay this beastly virus to rest? Here, we offer our suggestions for the key things we must do to rid the world of AIDS. BY REGAN HOFMANN 7 FROM THE EDITOR
18 WE HEAR YOU
9 FEEDBACK
20 WHAT MATTERS TO YOU
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On women living with HIV in New Jersey, adult film star Derrick Burts and a nonprofit that helps people volunteer abroad
14 POZ Q+A
The CDC’s Kevin Fenton addresses the disproportionate infection rates for young, black men who have sex with men and why they are especially vulnerable to HIV.
16 WHAT YOU NEED TO KNOW
Changes to health care make lifesaving tools more accessible to those who need them • working with pharma to get generic options on the market • Barbara Lee (D–Calif.) has proposed legislation that would review HIV criminalization laws and policies • AIDS is no longer an “automatic death sentence” in Canada • geckos do not cure AIDS
Your responses to the PrEP debate How to get HIV care and treatment if you’re undocumented—without getting deported
22 TREATMENT NEWS
A new entry inhibitor in the pipeline • why clinical trials are good for your health • a new booster for protease inhibitors could win FDA approval next year • an initiative to coordinate global efforts to find a cure • preventing mother-to-child transmission by 2015 • hearing loss is not caused by HIV • studying bone mineral density
26 COMFORT ZONE
Deep focused breathing can help you relax.
40 POZ HEROES
Orbit Clanton’s faith helps him survive HIV and inspires him to help others.
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. 175. 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. Smart + Strong® is a registered trademark of CDM Publishing, LLC.
FROM THE EDITOR REGAN HOFMANN EDITOR-IN-CHIEF JENNIFER MORTON MANAGING EDITOR ORIOL R. GUTIERREZ JR. DEPUTY EDITOR KATE FERGUSON, LAURA WHITEHORN SENIOR EDITORS CRISTINA GONZÁLEZ ASSOCIATE EDITOR TRENTON STRAUBE COPY EDITOR KENNY MILES RESEARCHER ERIC MINTON ASSISTANT ONLINE EDITOR LAUREN TUCK EDITORIAL ASSISTANT REED VREELAND INTERN CONTRIBUTING WRITERS
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Retiring the Ribbon
T
HE END OF AIDS. DOESN’T THAT HAVE A WONDERFUL RING to it? It has always been my dream: to live long enough to see science and society finally get the upper hand on HIV. Wouldn’t it be just incredible if HIV went the way of smallpox or polio? New scientific evidence and some compelling modeling suggest that if we make the right strategic investments today we can significantly ramp up treatment and prevention efforts that can stop the spread of HIV dead in its tracks. This past year—ironically the 30th anniversary of the first recorded cases of HIV—we have seen game-changing breakthroughs in our understanding of both how HIV works and the methods we can use to best combat the virus. From the notion that treatment works as prevention in people living with HIV as well as those who are not, to advancements in cure, microbicide and vaccine research, we are in a brave new world of AIDS science. The most important voices in science are saying something we’ve never heard before: AIDS could be history in our lifetimep. Now our task is figuring out how to evolve the question from, “Can we end AIDS?” to “How will we end AIDS?” That’s what we’ve tried to do with our feature story on page 30, “R.I.P. HIV.” The challenges and barriers to ending AIDS are many, and not inconsequential. But fresh knowledge and evidence provide us with the kind of opportunity that comes once in a lifetime, maybe a few times in a century. With enough money, political will and the right implementation plan, we can rewrite the ending of one of the worst stories ever told so that it is one of triumph, not endless tragedy. The trick will be securing the political and financial capital necessary to allow us to implement the strategies and apply the tools that can permanently hinder HIV’s forward progress. Yes, we need more money. And we need some fresh thinking about where it comes from. We must reposition our arguments for why the world should underwrite the end of AIDS. And to do that, we need a new surge in leadership and advocacy at both the highest and most grassroots levels within the HIV/AIDS community. As I watch the news and see children suffering in Somalia, I ache that the world’s not able to resolve that crisis and others like it. Tragically, because of a variety of geopolitical reasons, hundreds of thousands of Somalian people are likely to die of starvation only thousands of miles away from food that could keep them alive. This is not unlike what’s happening with HIV on a global scale. We have 33.3 million people with the virus and only 6 million in care. AIDS is a tragedy we can start stopping today. And because we can, it should be our moral imperative to do so. The AIDS pandemic is at a tipping point. Those who seize this moment are likely to be rendered immortal in history—while preventing tens of millions of people from becoming ghosts before their time. We can end AIDS. Together, we can live to see the day when we can finally lay the Red Ribbon to rest on HIV’s headstone. I don’t know about you, but I’d like to dance on the damn virus’s grave before I go.
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Standing Strong Against Hate and HIV
David Kuria of the Gay and Lesbian Coalition of Kenya fights homophobic hate crimes in Africa.
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Standing Strong Against Hate and HIV
GIRL POWER In “Sisters Act” (July/August 2011), three African-American New Jersey women—Dottie Rains, Michelle Braxton and Minister Jae Quinlan—shared their inspiring stories and discussed the misconception that HIV is exclusively a “man’s disease.” Their home state has the highest proportion of people living with HIV/ AIDS who are women, mostly women of color. I was so thrilled to see my friend Dottie Rains on the cover of POZ. I have known her for many years—what a wonderful person and role model. New Jersey’s problems with HIV are distinctive: We are fi fth nationwide in the number of people infected with HIV, but fi rst in the number of women infected with HIV. Your bringing our unique view of the virus to light will
Have an opinion about this month’s POZ? Comment on a specific story on poz.com, post a general comment via poz.com/talktous, or send a letter to POZ, 462 Seventh Ave., Floor 19, New York, NY 10018.
make it easier for those of us going into the community to do education and prevention work. It will also encourage women to seek out testing and, if needed, treatment. As a longtime reader of POZ, I thank you again for the wonderful article. MARYLOU FREUND TRENTON, NJ
ROB ALBANY, NY
PROTECTING PORN STARS The POZ Web Exclusive “Porn, Patient Zeta and HIV” interviewed adult film star Derrick Burts, a.k.a. Patient Zeta, who tested HIV positive in October. He used the resulting publicity to advocate for condom use in all adult films—both straight or gay.
It’s great that this has come to light and [Derrick Burts] is going to become a spokesperson. However, people in that industry know the risks—[unprotected] sex with that many partners is never fully safe. Add to that the escorting [that many porn actors do on the side] and the level of risk skyrockets. HIV isn’t anything new in 2011. When one enters the porn industry, accepting the risks is part of the program. After all, condoms aren’t foolproof. If you don’t want the risk, stay out of porn.
Requiring condoms will only put porn actors out of work and shift the shooting out of the United States to Eastern Europe, where they don’t seem to care. JAY STEPHENS FORT LAUDERDALE, FL
Maybe it’s time to seriously look at antiretroviral meds [in the form of PrEP, or pre-exposure prophylaxis] for all participating in “risky sex”—and time for an increased effort to advance research into microbicides. If condoms aren’t going to
How far do you travel to your AIDS service organization (ASO)?
work or be used, there are other options. Where is the scientific community’s commitment to solving this problem? It is not just in the porn industry, but among all of us who have multiple sex partners. Don’t judge— just solve the problem creatively with the resources that we have!
NAME WITHHELD RALEIGH, NC
INTERNATIONAL ENLISTMENT In “Volunteer Mission” (July/ August 2011), Carlton Rounds, the executive director and founder of Volunteer Positive, discussed the first-of-its-kind
How would you rate the services at your ASO?
14%
9% LESS THAN ONE MILE
Poor
28% 1–5 MILES
17%
26% 6–10 MILES
Fair
11% 11–20 MILES 26% MORE THAN 20 MILES
30
%
Excellent
39%
Good
nonprofit that helps Americans living with and affected by HIV to volunteer at AIDS service organizations abroad. This is a great opportunity for HIV-positive men and women. I volunteered at an orphanage in Buenos Aires, Argentina, five years ago and worked with kids who were affected by and infected with HIV. It was a life-changing experience, one I will never forget. There is a lot of healing power in reaching out and helping others who are in the same situation as you. It makes you feel stronger! Keep up this good work! JON LONG BEACH, CA
It is all well and good to help people in other countries, but there are people right here at home in the United States who need help. Case in point: AIDS Resources of Rural Texas serves [a 26-county area in north-central Texas] and is shutting down because of bureaucratic bull. The clients of its clinics are losing case management, health care and prescription services. Where is the help for those of us living with HIV in rural Texas? DON CITY WITHHELD
The top 5 services used at ASOs: 1. HIV Case Management 2. Dental Services 3. Mental Health Counseling 4. Medical Treatment 5. Peer/Group Support Source: POZ January/February 2011 Survey
poz.com OCTOBER/NOVEMBER 2011 POZ 9
THE POZ Q+A
BY ORIOL R. GUTIERREZ JR.
What does the new CDC data reveal?
Between 2006 and 2009, HIV incidence was relatively stable among MSM. Young black MSM were the only group in the United States to experience an increase in new HIV cases during those years. New HIV cases among black MSM ages 13 to 29 increased 48 percent during that period—from 4,400 in 2006 to 6,500 in 2009. New HIV cases among white MSM ages 13 to 29 and 30 to 39 combined was 6,400 in 2009.
Kevin Fenton became NCHHSTP director in 2005.
High-Impact Prevention
Kevin Fenton explains a new approach to prevent HIV in the communities most at risk.
K
EVIN FENTON, MD, PHD, IS THE DIRECTOR OF THE NATIONAL Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention (NCHHSTP) at the Centers for Disease Control and Prevention (CDC). He became NCHHSTP director in 2005. He has worked in research, epidemiology and prevention of HIV and other sexually transmitted infections since 1995. Fenton shares his thoughts on new CDC data, which show HIV rates are increasing among young black men who have sex with men (MSM).
14 POZ OCTOBER/NOVEMBER 2011 poz.com
Racial disparities in health, including HIV, are associated with broader social and economic factors. A higher “background prevalence” of HI V among African Americans means black MSM have a greater HIV risk. Recent CDC analysis found HIVpositive black MSM are half as likely to be taking antiretroviral (ARV) therapy as their white counterparts. People on ARVs have lower levels of virus in their blood and are less likely to transmit HIV. Many MSM, particularly black MSM and young MSM, are unaware of their HI V status and unknowingly may transmit the virus. A study of 21 major U.S. cities found nearly 60 percent of HIV-positive black MSM overall and 71 percent of HIV-positive black MSM under 30 were unaware of their status. If you don’t have the means to see a doctor, you may not get an HIV test or treatment until it’s too late. Those who can’t afford the basics in life may end up in circumstances that increase their HIV risk. Also, stigma and homophobia prevent many people from HIV testing and treatment. High rates of incarceration in some communities have led to imbalanced ratios of men to women in the nonincarcerated population, which can help spread HIV in these communities. Why is testing key among black and Latino MSM?
Black and Latino MSM are more likely to be HIV positive and unaware of their infection than other MSM. A study of MSM in three U.S. cities suggests that some black and Latino MSM may be contract-
COURTESY OF THE CENTERS FOR DISEASE CONTROL AND PREVENTION
Why are young black MSM so at risk?
ing HIV due to misleading assumptions about their personal risk, including a belief that having sex with men of their own race can reduce their risk for infection. This inaccurate belief was strongly associated with undiagnosed HIV. The study also points to missed opportunities for health providers to diagnose HIV-positive MSM, even when these men had access to health care and had disclosed their sexuality to their health care provider. Black MSM who were unaware of their HIV-positive status were three times more likely than black MSM who were HIV-negative to have health insurance and to have disclosed their sexuality to a health care provider. How is the CDC addressing the disproportionate rate of HIV incidence among black MSM, especially young black MSM?
Testing is a critical component of prevention efforts. Research shows that people who test HIV positive take steps to protect their health and prevent HIV transmission. Early treatment dramatically reduces the risk of transmitting the virus. Research has shown that increasing the availability of condoms and sterile syringes reduces HIV risk. Individual and small-group programs have been shown to significantly reduce risk behaviors among people with HIV to help ensure they do not transmit the virus. Also, we know that behavior-change programs for people who are at high risk of HIV can reduce risk behavior. We must continue to support effective substance abuse treatment that helps drug users stop injecting. We also must encourage screening and treatment for other sexually transmitted infections, which we know increase the risk of acquiring and transmitting HIV. Pre-exposure prophylaxis, or PrEP, is a new prevention intervention in which HIV-negative people take a daily dose of antiretroviral medication to lower their chances of acquiring HIV. PrEP has been proven effective among MSM, and the CDC has issued interim guidance on its use by MSM. Studies have shown PrEP to be effective among heterosexual men and women, although important questions remain about which heterosexuals
would most benefit. Also, the CDC is developing “Testing Makes Us Stronger” to encourage HIV testing among black MSM, a new phase of the ongoing public awareness campaign “Act Against AIDS.” We expect to roll out online and outdoor advertising in several major cities later this fall.
routine, opt-out HIV testing in health care settings for people regardless of risk, as research has shown that this can identify many people with undiagnosed HIV. It is also important to consider how interventions interact, and how they can most effectively be combined to reach the most-affected populations in an area.
What is “high-impact prevention”?
How is the CDC addressing funding?
T he Nat iona l H I V/A I DS St rateg y (NHAS) directs the nation’s response to the U.S. HIV/AIDS crisis. To support the NHAS, the CDC is aggressively focusing on increasing the impact of HIV prevention during a time of limited resources. The global economic crisis has led to major reductions in HIV prevention resources at the state and local levels. Federal financing is severely constrained. The CDC’s new “high-impact
It is more important than ever to ensure every federal HIV prevention dollar has the greatest possible impact. One way to ensure this is high-impact prevention. The CDC also has a new approach to HIV prevention funding for health departments. This will allow us to focus prevention resources on the areas and interventions where they are needed most. The CDC is increasing funding for hard-hit areas.
A study found that 71 percent of HIV-positive black MSM younger than 30 didn’t know their status. prevention” approach addresses this reality by achieving a higher level of impact with every federal prevention dollar. This approach guides the allocation of prevention resources, as well as the development of specific prevention strategies for all populations at risk, including gay and bisexual men, communities of color, women, injection drug users, transgender women and men, and youth. While all proven interventions may have a place in HIV prevention programs, high-impact prevention prioritizes those that are most cost-effective at reducing overall HIV cases. To make a substantial difference in new cases, priority should be placed on interventions that are practical to implement on a large scale at a reasonable cost. Coverage in the target populations is also critical. Prevention planners should select interventions based in part on how many people can be reached once the intervention is fully implemented. For example, the CDC recommends
While it is a relatively small change, we You could hardly miss the PrEP expect it to have positive news late last year,aasmajor media of all kinds on rushed announce the “pill impact the to epidemic. Several areas that can prevent HIV.” But with heavy HIV burdens willanother see muchpharmaceutical prevention techneeded increases in prevention funding, nique has had trouble even making including many Southern states anditsevits name among those who need eral major cities. most. Have you heard of PEP (post-
exposure prophylaxis)? given workers WhatFirst will it taketo tomedical lower MSM HIV rates? in hospitals after accidental We need to bring new energ y, new exposures (through a needlestick, approaches and newofchampions to the say), PEP consists an HIV regimen taken forleaders 28 days, beginning withinand fight. Gay need to re-engage 72 hours—preferably possimake HIV prevention aless—of key component ble exposure to the virus. In studies of their agenda, as they did in the beginof workplace exposure, PEP has ning of theas epidemic. charted much as an 80 percent In the early success rate.days of HIV, the gay comPeople living with or at risk of with munity succeeded against the virus HIV should know about PEP, yet the dramatic decreases in risk behavior and information is hard to find. In 2010, increases in condom use. Now it’s time to AIDS advocates and providers protect a new generation. can’t allow created at least two webWe sites— PEPnow.org and Both HIV to continue its PEP411.com. devastating toll. HIV offer not PEPbe info, including to passhould inevitable orwhere a rite of get it. Like PrEP, PEP has adherence sage for each new generation of gay men. challenges, side effects and costs. But only for 28 days. —ML
Go to cdc.gov/hiv for more information.
poz.com OCTOBER/NOVEMBER 2011 POZ 15
WHAT YOU NEED TO KNOW
BY CRISTINA GONZÁLEZ
Michelle Obama in South Africa
Health Care Should Be a Human Right—for All Two changes to health care (one actual and one proposed) could make it easier for Americans to access lifesaving tools when they’re needed: ● The
Affordable Care Act, a.k.a. health care reform, will now officially cover preventative health services for women, including contraceptives and HIV testing, without charging co-payments, co-insurance or a deductible. This could dramatically increase the use of these services, since cost is often cited as a deterrent, and it’s one huge step on the road to empowering a group of people at increased risk—women.
● In
the United States it’s estimated that one in five people living with HIV don’t know their status, and men—especially men who have sex with men (MSM)—remain the population most affected. U.S. Representative Alcee Hastings (D–Fla.) may have the answer. He has introduced a bill that would require Medicaid, Medicare and private insurers to cover the cost of voluntary routine HIV testing for everyone.
16 POZ OCTOBER/NOVEMBER 2011 poz.com
Earlier this year, Gilead Sciences became the first manufacturer of HIV meds to join the Medicines Patent Pool Foundation, a group that aims to improve access to affordable HIV medicines in developing countries through voluntary licensing of proprietary information (working with pharmaceutical companies to get generic options on the market). Since then, the pool has started negotiations with two other companies, Boehringer Ingelheim and Bristol-Myers Squibb, and has started conversations with five other patent holders. It’s great to see these companies consider pricing their products so that people in developing countries can access meds that are available to people in the developed world. However, given the fact meds need to be taken in combination, for the pool to reach its full potential, everyone has to jump in. Are they waiting for an embossed invitation from the 27.3 million HIV-positive people who would benefit immensely? Consider this it.
(PROTEST) DREAMSTIME.COM/RYAN BEILER; (LIFE PRESERVER) DREAMSTIME.COM/SKYPIXEL
Too Few Pharma Companies in the Patent Pool
HOT DATES / October 15
Legislation Proposed to End Criminal HIV Laws
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HIV-positive individuals are often presumed guilty and must prove themselves otherwise when it comes to laws that criminalize HIV, but that may change soon. Congresswoman Barbara Lee (D–Calif.) has proposed the Repeal HIV Discrimination Act. The legislation would require a review of all federal and state laws and policies that involve criminal cases against people living with HIV/ AIDS; laws that place an additional burden on HIV-positive people and laws not consistent with scientific evidence would be changed. Regardless of whether this piece of legislation sees the light of day as law, its introduction sheds light on the dark side of HIV criminalization.
Geckos Don’t Cure AIDS
AIDS Is Not an “Automatic Death Sentence”
Officials in the Philippines are fighting a growing trend of using geckos (small lizards) to treat AIDS. In folkloric practice, geckos are dried and pulverized to use as aphrodisiacs and medicines to heal a variety of illnesses, including AIDS. Now the gecko trade is exploding, with 11-ounce geckos selling for more than $1,000. Not unlike the Tanzanian tradition of hunting albino humans and harvesting blood and body parts for a black magic cure for AIDS, the dangerous practice of trying to cure AIDS with a lizard stems from lack of education and from desperation for a cure. Gecko traders have a flush market as people living with HIV who lack access to care and services and who face intense stigma and discrimination cling to any hope of a cure. Sadly, as misinformation and miseducation spread, so does HIV.
The law has finally started to catch up with the science—in Canada, at least. While ruling on a case in which a defendant was tried for knowingly transmitting HIV, Ontario Court Justice David Wake dismissed the four charges of attempted murder, because AIDS is not an “automatic death sentence” and treatment has advanced to the point that death is not an “inevitable consequence or even a probable consequence” of HIV for those on treatment with undetectable viral loads. While this is a step forward in the arena of HIV criminalization, one Canadian judge can’t rule on every case. HIV-positive individuals have been arrested or brought to court for HIV-related “crimes” in more than 30 states, even after the White House announced such laws have no basis in science and, in fact, undermine public health goals. The jury is still out on how American courts will react, but here’s hoping justice prevails.
National Latino AIDS Awareness Day
poz.com OCTOBER/NOVEMBER 2011 POZ 17
The PrEP Debate
BY REED VREELAND
Pre-exposure prophylaxis, or PrEP, is the practice of people at risk for HIV taking daily doses of antiretroviral medication (ARVs) to reduce their chances of contracting the virus. This summer the conversation around PrEP heated up. While studies suggest PrEP could be an important addition to the HIV prevention tool kit, concerns remain because PrEP’s effectiveness depends on adherence rates that are likely to be different in the real world than in clinical trials. Some worry that people on PrEP won’t get tested regularly for HIV, which could result in their contracting and spreading the virus and possibly developing resistance. There is also the issue of side effects and whether or not those on PrEP will be regularly monitored for them. Given inadequate global resources, there is an ethical
Chemoprophylaxis—a new word that covers PrEP and treatment as prevention—has probably already helped deprive prevention education of funding. Oral PrEP has no place as a public health intervention. It just does not work well enough. The costs extend far beyond the price of the pills. Since adherence cannot be assured, it’s certainly possible that implementing PrEP as a public health intervention may result in an increase in infections, and some will be with resistant virus. —Joseph Sonnabend, MD New York City I do not see why anyone would be excited by a 63 percent reduction in the chance of [getting] HIV. This means someone on PrEP takes a [significant] chance at getting infected—not good odds. —Anthony Natif Kampala, Uganda
dilemma to consider when choosing to pay for treatment as prevention in HIV-negative people when there are 27.3 million people living with the virus worldwide who are currently not in care. Since ARVs also work as prevention in people with HIV, the argument has been made for emphasizing treatment as prevention in people with HIV; doing so prevents the spread of the virus while saving lives. It is estimated that 45 people need to take PrEP for one year to avoid a single case of new HIV infection; meanwhile, administering ARVs to one person living with HIV could arguably prevent multiple new infections. While PrEP could serve as a powerful harm reduction tool for those at high risk for HIV and don’t have other options, the discussion continues about PrEP’s proper place in the mix. Below, some responses to this hotly debated topic. Join the conversation at poz.com/prep.
Sure there are scenarios where oral PrEP makes sense, and these scenarios make adding oral PrEP to the HIV prevention tool kit justifiable. But I do not think we should be promoting oral PrEP widely. Let’s spend our energy promoting treatment as prevention for the HIV infected. I think it makes a whole lot more sense. —Eric Sawyer New York City We must turn the HIV incidence faucet off, and treatment as prevention and PrEP are steps that must be taken—in tandem— to achieve that goal. Let’s do our due diligence and, after the facts are in, embrace new prevention opportunities to reduce new HIV infections and improve the health and well-being of people with HIV. —Ernest Hopkins San Francisco
PrEP will never be used by everyone, or even a majority. But it’s super important for those at very high risk of getting HIV. It could help overcome the biggest weakness of treatment as prevention—the extreme difficulty of getting people with early infection diagnosed and treated in time, when they are highly infectious to others. [PrEP] could do this by [preventing] these people from getting HIV at all. —John S. James Philadelphia I find it astonishing and despicable that all these trials in developing nations are being done given the severe [unlikelihood] that PrEP will be available to those people, especially in light of the fact that at least 10 million HIV-positive people [who need ARVs now] are not receiving treatment. —George Carter Brooklyn
To read more about this issue, search for “PrEP” on poz.com.
18 POZ OCTOBER/NOVEMBER 2011 poz.com
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WE HEAR YOU
Got Ink?
An estimated 3-5 million Americans are living with hepatitis C. Most don’t know it. Get tested today. Find out how at hepmag.com.
Getting HIV Care Without Getting Deported
Treatment options and help are available for people with HIV—and without immigration papers.
E
STHER*, A 70-YEAR-OLD GERMAN WOMAN, ARRIVED IN THE United States in 1986. She came with her husband on a temporary visa when his business sent him abroad. Four years later, Esther learned that her husband had AIDS and that she had contracted HIV from him. He died in 1992, leaving her in a country she wished to claim as her home, but in a state of legal limbo—unsure she could get care without being sent back. After the health insurance from Esther’s husband’s policy ran out, her doctor’s office in Hartford, Connecticut, was able to land her a new plan, thanks to the Social Security number U.S. Immigration had granted her upon entry. Until the
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BY BENJAMIN RYAN
ban on immigration for HIV-positive foreigners was lifted last year, Esther had little hope of securing the green card that would allow her to return to the states if she visited her daughter in Germany. So she decided to lie low, living off her husband’s pension, filing an American tax return every April. Ruben*, 25, was a medical resident in Juarez, Mexico, a violence-plagued border town close to El Paso, Texas, when he developed Kaposi’s sarcoma (KS) lesions a year ago. Terrified that the results of an HIV test performed at a local health facility would provide fodder for career-ending gossip, he got tested, confirming that he was positive, only after crossing the border. An AIDS service organization (ASO) in the United States directed Ruben to a public clinic. Public funds paid for his HIV medications and treatment—treatment that Ruben feels has been superior to what he could get in Mexico. Because he has no income, he qualifies for the hospital’s discount program, which covers chemotherapy to treat his KS. While exact numbers of undocumented immigrants living with HIV are inherently elusive—undocumented immigrants have to travel under the radar—some ASOs and public clinics in areas with heavy immigrant populations report that a significant percentage of their HIV-positive clients are undocumented. Many such clients, they say, are from Latin America, the Caribbean and sub-Saharan Africa. Providers who work with undocumented people say fear produces its own obstacles to their care. Frightened by the tides of anti-immigrant sentiment, many undocumented people are unsure whom to trust and feel wary of any services that seem connected with the larger American political system. They are often daunted by the expense of treatment and are unaware of possible avenues to health care coverage and social service organizations that can assist them along the way. “They think that if they go to a medical provider, their name will be given to deportation,” says Victor Martinez, a spokesman for Bienestar, an ASO with
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WHAT MATTERS TO YOU
locations across Southern California. But most often, that’s not the case. “When anybody walks in for health care, we’re doing health care,” insists L. Jeannine Bookhardt-Murray, MD, an HIV specialist at Harlem United, a community health center in New York. “We’re not the police. Our first priority and loyalty is to the patient.” Martinez recalls one client who went to a clinic for treatment, only to flee when asked for proof of residence. She assumed they were asking for her immigration papers, when all they wanted was a utility bill to show she lived in the area. Language barriers can create additional problems. “If people don’t speak English, they [often] don’t feel empowered to ask questions,” Martinez says. One opinion, reinforced by conservative media, suggests that it is wrong for immigrants like Ruben to come here illegally and milk the system without paying their share of public costs. Even Esther says, “I think it’s unfair to people who pay their share. I pay property taxes, I pay for my car and everything.” Public health experts counter that there is not only a humanitarian obligation to care for people with HIV regardless of citizenship, but also a broader public health consideration. Studies suggest a correlation between lowered community viral loads and reduced new infection rates. This means we could help slow the spread of the virus by getting meds to the HIV-positive people— including undocumented immigrants— who need them. Catalina Sol, chief programs officer at La Clinica del Pueblo in Washington, DC, says, “No matter what you hear in the news, you still have a right to obtain health care in this country, and health care providers want to provide it to you. There is not yet any law that restricts you from getting health care in this country [because of] immigration status.” Undocumented people with HI V need to understand these rights. Advocates say the entire HIV community needs to help by fighting to maintain and expand them. * Name has been changed
HOW TO: Get Health Care if Undocumented ●
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Ask your local AIDS service organization (ASO). Many can assign you a case manager who will help uncover the options available to you for HIV care and treatment. Find your local ASO at directory.poz.com. Even if you have no health insurance, funds are often available to pay for your health care. Ask your ASO case manager for information. Find a community health center (by asking at a local hospital). These public clinics are devoted to serving the health care needs of low-income members of their communities. Most have an open-door policy when it comes to a patient’s ability to pay. If they don’t ask, don’t offer. Many clinics never ask for proof of citizenship, so you need not mention it. Some may require you to live in the area; as proof, they might request a utility bill or just a letter from someone you live with. Know that health care workers are unlikely to report you to immigration authorities. Federal laws discourage anyone in a health care setting from revealing patients’ confidential information. While immigration status is not necessarily covered by this, most providers won’t divulge your information. Your best bet is a community clinic, where your health care needs are most likely to take priority over any interest in your immigration status. Request a translator. Federal law requires health care facilities that receive any Medicaid or Medicare funds to provide translators. Advocate for yourself! “The worst thing to do is to hide in fear,” says Charles King, CEO of New York City’s Housing Works. “Then you effectively deny yourself the care you need.”
Support Human Rights for All
Since Arizona instituted its draconian immigration reform, numerous other states have tried to put copycat laws on their books. In June, Alabama passed legislation even more severe than Arizona’s, making it a crime, for example, to transport or enter into a lease with an undocumented individual. At press time, the Obama administration had moved to block the law. But the administration had its own policy problems: The federal Secure Communities program, which mandates that information on any arrestee be given not only to the FBI but also to the U.S. Immigration and Customs Enforcement (ICE), has been a target of widespread protests. For more details on how the issue of immigration reform affects the HIV population, and what you can do to advocate for fair immigration policies, search “Deport Your Tired” (in quotes) at poz.com.
Take Steps to Become a Citizen Paths to citizenship include political asylum due to persecution in your home country, sponsorship by a relative or employer and aid for victims of domestic violence or human trafficking. Organizations that can help you find free or low-cost legal representation include the HIV Law Project (hivlawproject.org; 212.577.3001), National Lawyers Guild Immigration Project (nationalimmigrationproject. org; 617.227.9727), Immigration Equality (immigrationequality. org; 212.714.2904, 202.347.0002), ACLU Immigrants’ Rights Project (aclu.org/immigrants-rights; 212.549.2500), and American Immigration Lawyers Association (aila.org; 202.507.7600).
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TREATMENT NEWS
BY LAURA WHITEHORN
A Peek Into the Pipeline A new entry inhibitor (EI) is in the works. Like the EIs already on the market, cenicriviroc (TBR-652) is designed to prevent HIV from invading immune cells to infect them. And it might do more. The manufacturer, Tobira Therapeutics, says the drug may also calm the immune system and suppress inflammation. Here’s how: To keep HIV from entering cells, cenicriviroc blocks the CCR5 entry portal. But it also blocks CCR2, which is associated with increased inflammation. And inflammation is thought to cause many HIV-related health problems. Find more on cenicriviroc trials at clinicaltrials.gov.
Savvy Survival Strategy Researchers with the University of North Carolina at Chapel Hill have found that just being in an HIV clinical trial can enhance your health. Their research concluded that the better health outcomes of people who participate in clinical trials stem from the extra care, consultation and follow-up they get in a study. This “trial effect” could skew some study results (as it means trial subjects often have better adherence, treatment literacy and safer-sex practices, among other things), but for participants, it’s all good. The things they learn in the trial help them become more active in safeguarding their own health. Given the impending health care budget cuts and legislative reforms, A novel health enrolling in a clinical trial may get you top-notch health care when times plan: Sign are tough. And most important, trials often produce better treatments up to be a for everyone. Visit aidsmeds.com/clinicaltrials for more info. lab rat.
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To work most effectively, protease inhibitors (PIs) have long relied on a boost from Norvir (ritonavir). For years, Norvir has been the only PI booster available. A new one, cobicistat, could win FDA approval next year, offering Norvir-takers another choice. In anticipation of the drug’s approval, a fixed dose, single pill combination of Prezista (darunavir) with a cobicistat boost is being tested. If that works, we could see two new all-in-one quadruple pills—each a complete HIV regimen in one swallow—on pharmacy shelves. One quad will combine Prezista with cobicistat, Emtriva (emtricita bine) and GS 7340 (an experimental drug similar to Viread/ tenofovir, but possibly more powerful and longer lasting). The other quad will combine cobicistat with elvitegravir (an experimental integrase inhibitor), Emtriva and Viread. For more details on this new med, search “cobicistat” on poz.com. Another all-in-one is already available: Complera (Edurant/ rilpivirine plus Viread plus Emtriva) is approved for people starting their first HIV regimen.
(ILLUSTRATION) ISTOCKPHOTO.COM/ELAPELA; (SCIENTIST) GETTY IMAGES/ANDERSEN ROSS
Going Norvir-Free?
Ever used one of these?
An estimated 3-5 million Americans are living with hepatitis C. Most don’t know it. Get tested today. Find out how at hepmag.com.
TREATMENT NEWS
BY LAURA WHITEHORN
CURE WATCH Recent advances in AIDS research have increased the hope of finding a functional, or therapeutic, cure for HIV (one that controls the virus and also keeps it from replicating again— without meds), even if eradication (removing HIV from the body entirely) remains elusive. Another advance: At the International AIDS Society meeting (IAS 2011) this past July in Rome, scientists and positive people announced their collaboration on a new initiative called “Towards an HIV Cure.” It will coordinate and accelerate global work to find a cure. People living with the virus will play an important role. Francoise Barré-Sinoussi, IAS president elect and co-chair of the IAS international scientific working group, told POZ, “Patient community involvement is compulsory if we are to find a cure.” Steve Deeks, MD, of the University of California at San Francisco and co-chair of the initiative, added: “HIV research has long had tremendous support from the community. Countless volunteers participated in research with high risk and substantial burdens—particularly in the early years, before we had effective therapies. In many ways, today’s HIV cure research is comparable. It will depend on informed participants who will [join] studies with great benefit for the community, but perhaps limited benefit for the individual.” To sign up to help now, search “cure” at iasociety.org and add your name to the statement of support.
(EAR) GETTY IMAGES/VISUAL MOZART; (SKELETONS) DREAMSTIME.COM/ROBERT ADRIAN HILLMAN
Oh Baby!
At a U.N. summit this past June, the Elizabeth Glaser Pediatric AIDS Foundation announced its “Global Plan Towards the Elimination of New HIV Infections Among Children by 2015 and Keeping Their Mothers Alive.” Is that a realistic goal? The stats suggest so:
3.5% 6% 15-45%
The rate of mother-to-child transmission (MTCT) of HIV in South Africa where prevention of mother-to-child transmission (PMTCT) services are available during pregnancy.
The MTCT rate in areas with less access to PMTCT services.
The MTCT rate in areas with no PMTCT services.
Listen Up Hearing loss in people with HIV results from age, race and other risk factors, not the virus. While HIV causes many problems, hearing loss is apparently not one of them. It’s not known whether poor hearing is more common among positive people than among others, but two large studies recently found that when it occurs, it is not caused by the virus or the meds.
Make Some Bones About It
A study by the Department of Veterans Affairs (VA) found that, while some HIV meds—in this trial, tenofovir (in Viread, Truvada and Atripla) and Kaletra (lopinavir/ ritonavir)—can play a role in the disproportionately high incidence of bone fractures among people with HIV, the greater culprit is a mix of other risk factors including race, age, smoking, low weight, hepatitis C and diabetes. The study reviewed medical records of more than 56,000 positive people between 1988 and 2009. But there’s still no need to panic, whichever meds you take: Fractures occur in fewer than two in 100 HIV-positive people. In another study, Isentress (raltegravir) with Kaletra caused lower decline in bone mineral density (BMD) over 96 weeks. But don’t switch meds yet, says Roger Bedimo, MD, of the VA. Try calcium and vitamin D supplements while researchers “investigate whether discontinuing tenofovir will improve BMD and reduce fracture risk.”
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COMFORT ZONE
BY CRISTINA GONZÁLEZ
Five Steps to a Perfect Deep Breath 1. TAKE A SEAT. Make sure you’re in a comfortable position. 2. USE YOUR HANDS. Put one hand right below your rib cage and the other on your chest. 3. BREATHE IN. Inhale through your nose, letting your belly push your hand out. Your chest should remain still. 4. BREATHE OUT. Exhale through your lips, like you’re whistling. Use your hand to push the air out of your belly. 5. REPEAT. Run through the sequence a few more times, taking it slow and focusing on each breath.
Waiting to Inhale
Every day, all day, in and out. It’s so natural, you do it in your sleep. While breathing is an automatic act, we suggest focusing on long, regenerative breaths that connect your subconscious and conscious. Breathing exercises have long been shown to reduce anxiety and depression, muscle tension, headaches and fatigue—while also increasing energy. But most important, focused breathing gets instant results. Stimulating blood flow and oxygen can help you relax instantly. Breathing exercises are also an invigorating way to wake up in the morning. And they’re so restorative you might consider doing them at night to wind down. Breathing is one bodily function you can easily control—and with every breath you take, you can improve your mental and physical health.
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For a morning pick-meup that relieves muscle stiffness and clogged breathing passages, try this: Bend forward at the waist with knees slightly bent, letting your arms dangle close to the floor. Take a deep and slow inhale while rolling up slowly, one vertebrae at a time, letting your head come up last. Hold your breath for a few seconds then exhale slowly as you bend forward at the waist again. Repeat.
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When you’ve mastered belly breathing, try the more advanced 4-7-8 routine. Using the same technique as above, breathe in while counting to 4, then hold your breath while counting to 7, then breathe out completely while counting to 8. Repeat.
CREDIT
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R.I.P. HIV
Thirty years after people first started dying from a then-unknown virus, we face a thrilling tipping point in AIDS history. Leading scientists say the end of the pandemic is possible, maybe even in our lifetime. Now, the question is: How do we seize this moment? Here, we spell out our suggestions for what we need to lay HIV to rest. BY REGAN HOFMANN
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N SEPTEMBER OF 2010, THOMAS FRIEDEN, MD, MPH, director of the U.S. Centers for Disease Control and Prevention (CDC), named HIV one of “six winnable battles” the CDC will wage under his command. His claim that AIDS can be beaten may prove prescient. Global health leaders agree that scientific breakthroughs indicate the end of AIDS could be in sight—possibly in the near future if we strategically apply our resources to capitalize on recent discoveries. What’s different now? Primarily, new data from U.S.funded research showing that antiretroviral treatment (ARVs) serves as prevention—in both people living with the virus and those who are not. A recent study known as “HPTN 052” offers evidence that treating people with HIV can lower the risk of viral transmission by a whopping 96 percent. When we put people with HIV on ARVs, we save their lives—and stop the spread of HIV. Several other studies show that when people at risk for HIV take treatment daily (a practice called “PrEP” for “pre-exposure prophylaxis”), or when they take ARVs after potential exposure (a practice known as “PEP” for post-exposure prophylaxis), their chance of contracting the virus is reduced. The long-waged battle between the treatment and prevention camps is over—treatment is prevention. Bill Gates, one of the most generous funders in the fight against Isn’t it AIDS, has said, “We can’t treat our way out of this high time epidemic.” Indeed, ultimately, the answer is having we said, “Hasta a vaccine—and a cure. But while we develop them, la vista, it appears the tools already in our possession can HIV”?
begin to end AIDS. Perhaps we can at least partially treat our way out of AIDS after all. Anthony Fauci, MD, head of the National Institutes of Health’s National Institute of Allergy and Infectious Diseases, said recently in Science: “The fact that treatment of HIV-infected adults is also prevention gives us the wherewithal, even in the absence of an effective vaccine, to begin to control and ultimately end the AIDS pandemic.” Putting a lot more people with HIV on ARVs is the equivalent of capping the well in a large oil spill. It doesn’t completely solve the problem, but it’s a first—and necessary—step to doing so. Treating people who are living with HIV stops the spread of disease, keeps the world safer and saves billions of American dollars—these facts provide new justification for the cost and effort required to achieve our goals of universal access to care for all who need it. The United Nations’ new goal for universal access is 15 million people by 2015. Currently, only 6 million of the 33.3 million people estimated to be living with HIV globally are on ARVs. Having so few on pills is like trying to clean up an oil spill while the well is still a geyser. Once, the notion of universal access smacked of giving endless, expensive medications to an eternally growing pool of people who couldn’t afford them themselves and relied on the largesse of governments and pharmaceutical companies to save them. New data suggest that doing the right things today could enable us to get the upper hand on AIDS forever. The critical question is no longer, “Can we end AIDS?” but “Will we end AIDS?” Will we garner the political and financial
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capital to do what science suggests we can? For years, we have tried various approaches to behavioral and non-biomedical prevention, with some success. But, since people continue, and likely always will, to have unprotected sex and share injection drug equipment, incidence of new infection rates is not declining and will never decline unless we stop HIV dead in its tracks. The best way to do that is to provide ARVs to the bulk of people living with HIV who need them. Modeling in several countries shows a direct correlation between increased access to care and decreased rates of new HIV infections. There are many barriers to care. Drug prices alone are not keeping people from pills. In some nations, political unrest, lack of infrastructure and/or a shortage of medical workers mean that even if governments could afford the pills, the
of recent medical breakthroughs will maximize their impact and hasten doomsday for AIDS. We can make major headway by employing our complete arsenal of tools in a way that ensures we get the biggest bang for our buck. But we can’t get blood from a stone. If we are to end AIDS, we eventually will need more money. And it needs to come from fresh sources. No nation has applied more currency to the fight against AIDS than America. At its peak, the budget for the President’s Emergency Plan for AIDS Relief (PEPFAR) was $48 billion dollars. The United States spends about $19 billion a year to fight AIDS at home. But that’s about to change as our government now faces cutting $1.5 trillion from the federal budget. That’s not a budgeting haircut. That’s a buzz cut. As budget cuts are made, all discretionary spending and entitlement programs (which comprise the bulk of domestic and global AIDS funding) are at risk. The community of people living with HIV/AIDS and our friends must convince political, economic and global health leaders not to slash AIDS funding. We are up against those fighting for support for other diseases, education, the military’s fight against terrorism, and the dollars needed to keep Social Security secure, to name a few causes. Our cry must be particularly pointed. If we fail to defend AIDS spending, tens of millions of people will perish needlessly in the next decade. In his opening keynote speech at the International AIDS Conference in Rome, UNAIDS executive director Michel Sidibé called gaps in access to HIV treatment an affront to humanity that can and must be closed by innovations in developing, pricing and delivering treatments and commodities. “History will judge us not by our scientific breakthroughs,” he said, “but how we apply them.” Ending A IDS won’t be easy, it won’t be cheap, and it won’t happen overnight. But if we develop a smart, sound, strategic plan—one that uses existing resources better and secures new funding from other nat ions — and if
“GLOBAL HEALTH LEADERS AGREE: THE END OF AIDS IS IN SIGHT.” meds still wouldn’t get to the people. In the United States, impending federal budget cuts, inadequate state contributions to Medicaid and recent changes in eligibility requirements for Medicaid, lack of childcare and transportation, homelessness, substance addiction, mental health issues, comorbidities, health disparities, misperceptions and language barriers also present impediments to care. And of course, fear of stigma, discrimination, homophobia, criminalization, deportation, physical harm and death undermine HIV care efforts around the world. While these challenges are daunting, it pays to overcome them. We need to greatly expand our testing efforts and do a much better job of linking people to and retaining them in care. If many more people become aware of their HIV status earlier, and if they access care and lower their viral load to an undetectable level, then they not only improve their own health but they contribute to better public health. Connecting people to medicines before they inadvertently pass along the virus will reduce community, and possibly global, viral loads. This is how the spread of AIDS begins to slow. This is how we cap the well. Having 27.3 million people with HIV globally (about 1 million of them in America) remain untreated with existing drugs that can save their lives and prevent AIDS from spreading is a humanitarian crime of epic proportion. It’s also no way to stop the AIDS pandemic. Expanded access to HIV treatment, while a lynchpin in any strategy to end AIDS, will not, by itself, solve the problem. We also need to develop and distribute biomedical prevention tools (like PrEP, PEP and microbicides), scale up male circumcision and continue to distribute more male and female condoms and clean syringes. The question is one of relative proportion. Current levels of resources applied in newly focused and optimally strategic ways to reflect the insight
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President Barack Obama, will you fight for us?
we sell it all the way up the political line to the president himself and across both sides of the Congressional aisle, it can be done. This Congress and this president have the chance to kill one of the world’s worst killers and in the process save tens of millions of people and billions of dollars. If we rapidly increase access to care, and if infection rates and deaths decline, then the resources needed to fight global AIDS could shrink in as few as five years. And, significantly expanding access to care will make the pharmaceutical companies who make the drugs even richer. I know, I know. But the answer to bankrolling the end of AIDS is not as simple as dropping drug prices. The prices set by for-profit companies are only likely to go down if the volume of drugs sold goes up. And for that to happen, we need to find more guaranteed payers. This is why the rest of the world needs to help come up with the cash to expand access to care for people with HIV. We have a rare opportunity to rewrite the ending of one of the world’s worst tragedies. We didn’t give up when we didn’t have the answers for what can end AIDS—we certainly shouldn’t now that we do. The bottom line? If the HIV community can encourage the world to up the antes of international financial and political will, if global advocacy efforts are bolstered and expanded, if we correctly position the arguments for why the world should spend the money to stop AIDS, if we put AIDS back in the spotlight and take it out of its silo, if we utilize existing health care and faith-based infrastructure to deliver care, if we make health care a human right that is equally offered to all, if we protect the human rights of people with HIV, if we put our money where we know it works best, and if these things result in more people getting educated, protected, tested, treated and linked to care, HIV’s days could be clearly numbered. With that in mind, POZ outlines seven key areas where we need to focus global efforts if we are to end AIDS, and we suggest specific tactics within each of those areas.
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1. POLITICAL WILL We need to ask the president to step up his game on HIV/AIDS. President Barack Obama took a leadership position
on HIV/AIDS when he made the development of a National HIV/ AIDS Strategy for the United States a campaign promise. He delivered on that promise, reinvigorating the Office of National AIDS Policy, re-upping the President’s Advisory Council on HIV/ AIDS (PACHA) and ushering the National HIV/AIDS Strategy to life. It exists. Now we ask: Will its implementation get funded, or will it remain merely a promise on paper? If President Obama can encourage Congress to secure the money to fight AIDS abroad and at home at levels capable of changing the course of the pandemic (which in today’s grim econo-
my may equate to defending current spending levels or at least, minimizing cuts), he will do something no president has done before: jump-start the end of AIDS. PEPFAR is already ahead of its pledge to put more than 4 million people on meds by 2014. We’d like to see President Obama ratchet it up and officially pledge to put 6 million in care by 2013 as a “down payment” toward achieving the United Nations’ goal of 15 million in care by 2015. Linking millions more with HIV to ARVs, coupled with being the first president to reform health care, would secure President Obama’s place in the humanitarian history books. It would also make him a wildly popular guy at the International AIDS Conference, scheduled for next July in Washington, DC. And being popular is a very good thing for a man looking to get re-elected several months later. We need to request that the first lady publicly state that HIV/AIDS is the No. 1 cause of death for women of childbearing age worldwide. Michelle Obama’s main platform is
fighting obesity. While it is a critical issue that needs resolving, nothing kills more women ages 15 to 44 than HIV. Nothing. The Obama administration launched the U.S. government’s Global Health Initiative (GHI); and GHI took PEPFAR under its umbrella. Since one of the GHI’s underlying principles is to “implement a women- and girl-centered approach” to health, and considering how profoundly HIV undermines the health of women and girls, HIV should remain at the top of the list of GHI’s concerns. The first lady could help ensure that happens. While we’re asking, we’d also love to see the first lady and her daughters Sasha and Malia help unfold the AIDS Quilt on the Mall in July 2012 at the start of the International AIDS Conference—a conference that the president and Congress helped bring home by lifting the ban on people with HIV traveling into the United States. The president and first lady were publicly tested for HIV when visiting Kenya in 2006, and on her recent trip to South Africa in 2011, Michelle Obama said, “You can be the generation that ends HIV/AIDS in our time—the generation that fights not just the disease, but the stigma of the disease, the generation that teaches the world that HIV is fully preventable and treatable and should never be a source of shame.” If there was ever a first couple that could embrace the end of AIDS as part of their legacy, the Obamas are it. We need to encourage conservative Democrats and Republicans (yes, even Tea Partiers) to support AIDS spending stateside—and overseas. Fighting AIDS has
historically been a bipartisan effort. Both sides of the aisle have seen the value of America launching a global humanitarian relief effort focused on AIDS via PEPFAR. The program built relationships between our government and foreign governments, elevated health literacy around the world and developed health infrastructure with and in other nations. In turn, those accomplishments served as sound foreign policy and were good for U.S. national security. Regardless of what anyone thinks of the rest of his record, President George W. Bush’s decision to start PEPFAR (and
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Congress’s approval to fund it) saved millions of lives and made America many new friends around the world. Bush II believed that because America could help end the suffering of people with HIV/AIDS globally, it was our moral imperative to do so. Was PEPFAR perfect under Bush II’s oversight? No. Did it have questionable constrictions around certain populations like sex workers and injection drug users? Yes. Does it happen to align with some of the nations on which we are dependent for natural resources (like oil)? Yes. Did it give the religious right a direct line into vulnerable people in need of “conversion” in the developing world? Yes. But it also proved that we could get lifesaving medications to people in developing nations who need them and that they will take them as prescribed, then get healthy, survive, parent their children and contribute to the world’s economy. I’d like to think that the current crop of Republicans could be similarly moved to see the value of fighting HIV/AIDS both abroad—and at home (because while Bush II set out to save the world from AIDS, he forgot that the United States was part of the world). However, bearing witness to Tea Party Republicans’ attitudes toward all disenfranchised people, it’s reasonable to be deeply skeptical that Tea Party leadership would be benevolent to people with HIV. We must help them see the light. The argument for finding the money to end AIDS exists. We just have to make it compelling to everyone. We need to support the HIV/AIDS Caucus within Congress. As we go to print, the HIV/AIDS Congressional
Caucus has been strengthened. As founding co-chair of the caucus, Barbara Lee (D–Calif.) is leading the charge to keep Congress abreast of HIV/AIDS issues. To date, there are 50 members in the caucus, including: caucus co-chairs Trent Franks (R–Ariz.) and Jim McDermott (D–Wash.), as well as notable newcomer Jim Himes (D–Conn.) and AIDS heroine Nancy Pelosi (D–Calif.). Currently, two new pieces of AIDS legislation are on the Congressional table. They include: H.R. 1462, the National Black Clergy for the Elimination of HIV/ AIDS Act of 2011, re-introduced by Charles Rangel (D–NY) and Senator Kirsten Gillibrand (D–NY); and H.R. 2704, the Justice for the Unprotected against Sexually Transmitted Infections among the Confined and Exposed (JUSTICE) Act (introduced by Lee). Another bill, the Repeal HIV Discrimination Act, is scheduled to be introduced by Lee in September. With the help of this bipartisan caucus, we have a better shot at educating more members about why these bills are essential and must be passed. Not to mention that the caucus will be critical as we struggle to protect AIDS funding. We need to start an AIDS PAC. Washington, DC, is a trans-
actional town. If we expect members of the House of Representatives and Senate to go to bat for us, we need to ensure they get re-elected. “PAC” stands for political action committee and refers to a private group of people who organize to elect political candidates or to advance certain issues and/or legislation. A political committee is so named when the organization receives donations, or makes them, in excess of $1,000 for the
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purpose of influencing a federal election. In short, an AIDS PAC allows us to put our money where our mouths are. We can ask, but money really talks.
2. MONEY We need to secure the money we have and raise more soon to avoid needing a whole lot more later. Almighty
greenbacks, euros, yen, pesos, rands or rupees. Call your dinero anything you want—we must defend our earmarks and find more funding if we can. This is challenging during an economic crisis. However, if we’ve learned anything from our current state of economic affairs, it’s that ignoring problems in the short term ensures they can reach catastrophic dimensions down the road. As Anthony Fauci said at a meeting of the U.S. Mission to the United Nations this summer, “Either you are going to pay a lot now [to end AIDS] or an awful lot later on.” The piper will be paid one way or another. We can either pay with cold, hard currency or with tens of millions of lives. Modeling conducted by Bernhard Schwartlander, MD, UNAIDS director for evidence, strategy and results, shows that if we invest and maintain the $46.5 billion needed over the next 10 years to make the United Nations’ universal access goal a reality, new HIV infections would be reduced by 12.2 million between 2011 and 2020, a cumulative 7.4 million deaths from AIDS would be averted during that time and 29.4 million life years would be gained. The $46.5 billion investment would pay for itself with savings incurred from averted infections and their associated cost of treatment. The more quickly we act, the better our long-term outcomes and the more money we’ll save to apply to other problems at home and around the world.
We need to encourage the U.S. government to remain a leader in global funding for HIV—in order to encourage other countries to pony up. It was never the United States’
intention to pick up the tab for ending AIDS. PEPFAR was designed so that the countries we helped could eventually sustain their own AIDS relief efforts. Our long-term strategy needs to shift the monkey of paying almost entirely for AIDS off the backs of the U.S. government and American tax payers and spread the enormous cost among all those who will
benefit from the demise of AIDS. This isn’t happening. The Global Fund to Fight AIDS, Tuberculosis and Malaria is essentially flat funded. Some nations are refusing to meet their pledges (Italy, for example, is $192 million in arrears); some have reduced their pledges; and some are paying far too little given their relative wealth and dependency on the fund. More of the G8 and G20 countries must be convinced to get some skin in the AIDS game. The world needs to find a way to hold donor nations accountable to their Global Fund commitments, and we must see an increased investment in bilateral and multi-lateral aid. Affected countries with big GNPs should be required (and pressured by in-country advocacy efforts led by people with and affected by HIV) to dedicate more resources to their own epidemics. The Global Fund’s policy review process needs to be refined; we need to get more strategic about HIV-related granting. All donors and affected countries should reallocate their HIV portfolios to maximize impact and to ensure investment in what we know works in any particular area or nation (for example, male circumcision or prevention of mother-to-child transmission in certain African nations).
solution. As we wait for health care reform, we must ask the president and Congress to continue to preserve AIDS funding. We need to ensure states are pulling their load and that they are using their funds most efficiently. And we need to ask our community to make some difficult choices and to make the money we already have work harder. The depth and breadth of the president’s commitment to HIV/AIDS will be challenged as recommendations for discretionary and entitlement budget cuts land on his desk. The U.S. political system is not structured to reward long-term planning and decision making on the part of politicians. Many politicians have no choice but to cater to their largest donors short term to secure re-election. This is true, even for the president of the United States. And the Supreme Court’s ruling that private corporations could give unlimited funds to politicians made it more challenging for elected officials to support what’s good for the public, the nation and the world, as opposed to what’s good for the special interests of their biggest backers. That’s not conspiracy, that’s the way the system currently operates.
“EITHER YOU ARE GOING TO PAY A LOT NOW OR AN AWFUL LOT LATER ON.”
ISTOCKPHOTO.COM/KYU OH
We should encourage the United States to demonstrate it is prepared to do what it expects other nations to do: find the funds to provide health care for their citizens with HIV. About 950,000 of the estimated 1.2 million Ameri-
cans living with HIV are not on antiretroviral medicines (ARVs) for a variety of reasons. A good way to inspire other nations to contribute to the global AIDS fight would certainly be providing care for our citizens. By doing so, we could also show that when enough people are on ARVs consistently and that when this expanded access is coupled with awareness, testing and prevention efforts, AIDS can be wiped out. The Affordable Care Act, a.k.a. health care reform, should address much of the gap in access to care in the United States, but reform doesn’t fully kick in until 2014, and even then, it won’t solve all of the health care concerns of people living with the virus domestically. So far, the president and Congress have released emergency funding to meet the growing need of the AIDS Drug Assistance Program (ADAP). And the pharmaceutical companies that manufacture the drugs have dropped prices and increased funding for their Patient Drug Assistance Programs. But the recent waves of emergency funding are not a long-term
This means the president is in a pickle. If he fails to get re-elected, it is possible (and likely) that Republicans will abolish his legacy of health care reform. That means people with HIV will be in deep trouble since the majority of us rely on entitlement programs like Medicaid, Medicare and the Ryan White CARE Act for meds. But in order to get re-elected, the president may have to make some budget cuts that could prove disastrous short- (and possibly long-) term for many disenfranchised people—including many people living with HIV/AIDS. We need to help him understand that this shortterm thinking will kill people, cost more money long-term— and backfire when it comes to Election Day. We need to engage the private sector to help raise new money for HIV/AIDS. Corporations could play a hugely
important role in bringing in-kind services and resources to the fight against HIV/AIDS. There are myriad ways multinational corporations can leverage the reach, resources and the power of their brands to capture people’s attention and link them to lifesaving care. Corporations can deliver information or tools for health, leverage connections and media platforms or underwrite micro-lending programs to help people with HIV secure jobs, incomes and health insurance. We also need innovative financing solutions that allow the general public to make micro-contributions to the AIDS cause. A prime example is “Massive Good”—a program launched by the Millennium Foundation for Innovative Finance for Health. Massive Good utilizes a global network of travel agencies to allow travelers to add two dollars to hotel or flight reservations.
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“MAKE NO MISTAKE; WE ARE FIGHTING FOR OUR LIVES AGAIN.” The money is passed to UNITAID, which buys AIDS drugs in bulk and helps get them to those in need. Another example is AIDS United’s recently launched “Make It Grow” campaign that also solicits micro-donations from individuals—donations that are matched dollar-for-dollar by Social Innovation Fund federal government grants. That program also supports access to AIDS meds for those who can’t afford them. We need to broaden our fund-raising appeals beyond the usual suspects when it comes to targeting philanthropic foundations. The Bill & Melinda Gates Foundation,
the Elton John AIDS Foundation, the Ford Foundation, the MAC AIDS Fund and others have contributed gigantic amounts of cash to the AIDS fight. But we must solicit new philanthropists and charitable foundations, directing our pitches at foundations beyond those that focus on funding health care. We need help with policy, advocacy, media, technology and education. And, our message should be that those who invest today in the fight against AIDS have a chance to end suffering on a biblical scale. And who doesn’t want to be a hero of epic proportion? We need to whip up Wall Street. We should re-engage the
investment community and convince the big money crowd that substantial investments in AIDS research science now could not only make investors richer but also secure them a legendary place in history for fast-tracking the cure and a vaccine. There is no longer a rationale for the existence of the “Valley of Death” (as the gap between funds needed to develop basic science and funds needed to bring drugs to market is known). Indeed, eliminating the Valley of Death is likely to save tens of millions of lives—while potentially generating billions of dollars. We need to address the pricing issue of AIDS drugs to allow more people access to lifesaving care. The 27.3 million
people not in care represent a potentially huge global expansion market for HIV drugs—a market that could bring billions to the for-profit drug companies, even if they reduced their prices. The trouble so far is that no one has been able to guarantee a payer for that market. We need to find a way to make it more profitable for pharmaceutical companies to get the drugs to more people—people who can’t pay for them themselves. It’s a conundrum. If the cost burden for universal access to care falls solely onto governments (particularly the U.S. government) and the for-profit companies that manufacture the pills, then these entities don’t have a significant economic incentive to encourage more global expansion to care.
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We need a more sophisticated strategy for asking pharmaceutical companies to reduce their drug costs. Just because their products happen to provide humanitarian relief does not, apparently, mean that pharma is obligated to manufacture or distribute them at lower prices. There needs to be a financial incentive. We need innovative financing solutions that tap fresh sources of money, and we need more support from the G8 and G20 countries, the private sector and citizens of the world. If we could gather a pool of cash in order to make universal access feasible, we could go to the table with pharmaceutical companies and negotiate for more compassionate pricing. Advocates for the AIDS Drug Assistance Program (ADAP) have shown that a model exists for lowering drug costs in order to get more pills to more people and grow profits. The Clinton Health Access Initiative and the work being done to engage pharmaceutical companies in international patent pools will prove key to ending AIDS.
3. ADVOCACY CY We need to mobilize a coordinated, d, effective, relentless advocacy effort that puts bipartisan tisan pressure on the White House and local and state officials. fficials. There’s a policy
wonk expression known as “grasstops,” stops,” which means, loosely, “from the grassroots to the he top of the decisionmaking pyramid.” We need to launch ch a kickass, grasstops AIDS advocacy effort. It’s important to ask the president to take a global leadership role on HIV/AIDS, and to solicit Congressional support, but they can’t do it alone. The HIV/AIDS DS community needs to make a lot more noise. The squeakyy wheel always gets the grease, and as we head into “Budgetgeddon” eddon” (our name for the end of federal funding as we know w it), we have serious work cut out for us. We can’t be afraid to try to changee the minds of our staunchest opponents. We need to pile le into the offices of those most averse to discussing thee issue. And stay there until they talk with us. Someone’s ne’s got to get to Speaker John Boehner and Cong g ressman Eric Cantor and enlighten them on AIDS. S. We must reach out beyond the usual suspects of our friends and members on the appropriations committees. es. Those people are important. But we need new friends, too. In order to maintain old friends and make new ones on both the state and federal level, manyy of us need to call them frequently, share our personal stories, tories, get mad when they let us down and thank them hem when they don’t. We also need to be singing ging the same song. More streamlined and better coordinated advocacy messages are critical. We also need to put price tags on n our “asks” and be able to substantiate savings vings where possible.
THE SYDNEY SY MORNING HERALD/FAIRFAX MEDIA VIA GETTY IMAGES
We need to ask famous, rich, powerful people to lend us their access and leverage in order to get to members of Congress who may not want to hear from us. Once, the
false sense of security by a flush economy and many effective treatment options. But those days are gone. Make no mistake, we are now fighting for our lives all over again. I know that so many of us are tired from waging a long battle. But we need to get furious that tens of millions of our brothers and sisters are at risk for illness and death even as we swallow lifesaving pills. We also should realize that all of us currently in care are not far from being without care. We need fear and anger over the injustice of health inequities to fuel our fight again. We need more theater, more outrage. More fake blood, more die-ins, more faux coffins. Or else those things will come our way in their all-too-real forms. When an advocacy group says “jump” we need to do so. Phone calls to Capitol Hill are free. There is no reason tens of thousands of us can’t make them, and make our representatives hear our fury.
We need to come together with other disenfranchised groups and threaten to swing the vote. The most disen-
Those of us with advocacy experience need to help others around the world launch advocacy efforts in their nations. If we’re ever to get the G8 and G20 countries on
people fighting for HIV/AIDS funding on Capitol Hill ran Wall Street, Hollywood, Broadway, Seventh Avenue and the global media. Tragically, many of them have passed away. We need to engage new heroes and heroines, including people with ties to Republicans and Tea Party Republicans. We also need to ask for the support of the influential and powerful LGBT men and women in the world to help us get deep inside Capitol Hill again. HIV continues to disproportionately affect LGBT people, and HIV-related discrimination intersects with LGBT discrimination. The HIV and LGBT camps must align again to fight together for human rights and push the notion that health care is a human right.
franchised often have the least political power. But we do have the power to vote. The HIV community needs to ma make it clear that if money for AIDS disappears, so does our vote. A And we all must be registered. A group of 1.2 million d does not a swing vote make, but if we band togethe together with our disenfranchised peers (the unempl unemployed, the elderly and others who depend on Medicaid and Medicare), we have a shot at a rocking the vote. Bound together with o others, we all stand a better chance of surviv survival. Health care reform is the m most likely way for our country to be able to t address the AIDS epidemic stateside state (and the health concerns concern of other disenfranchised people); we must ensur ensure that the Affordable Care C Act is implemented. To do implemen that, we m must help our curre current president get rre-elected. This is pa part of what it will take tak for the Lady president to have Gaga, t he for t it ude to will you tweet defend he health care for us? budgets: millions m of angry Ameri Americans who will unseat him h if he fails to protect our lives. We ne need to get angry again ang and let it show. Those sho
wh can acwho cess care have been ha lulled into a lul
board, there needs to be more activism in the nations most capable of and likely to contribute to the global AIDS fight. Those of us who’ve been doing this work for a long time must teach those new to the fight—and we must fight on behalf of those unable to advocate for themselves.
4. THE MEDIA We need to refocus attention on HIV/AIDS and make it a critical cause again. In 2011, AIDS lost one of its greatest
heroines with the passing of Dame Elizabeth Taylor. We’ve lost so many over the years. Thankfully, we still have amazingly stalwart and remarkably generous friends like Bono, Sir Elton John, Magic Johnson, Annie Lennox and others. For AIDS to stay on the cusp of collective social consciousness, we need to bring it back into the spotlight. And to do that we need the familiar talent to make a high-profile comeback and new talent to take the AIDS stage. Maybe Taylor Swift can get on board. Usher. Justin Bieber. Selena Gomez. The casts of Glee, Vampire Diaries and True Blood. Then there’s always the Holy Grail of Gaga. Can you imagine what it would do for AIDS awareness if Lady Gaga tweeted regularly about the virus to her Little Monsters? All 10 million of them. We need to encourage leaders in the media, including social media, to hop on the AIDS bandwagon, too. We
need to educate a whole new generation of reporters and producers about both the importance of mainstream coverage of HIV/AIDS and how to do it sensitively, accurately and compellingly. We can help the media by building relationships with them, sharing our lives and working with them on local, national and global stories. Quick, someone pitch a Current TV show on HIV/AIDS! And let’s get an HIV-focused show on OWN (the Oprah Winfrey Network). Anderson Cooper, can you please talk about AIDS a whole lot more? Maybe Google
poz.com OCTOBER/NOVEMBER 2011 POZ 37
will use its logo to save lives. How about a little Google AIDS love on National HIV Testing Day or World AIDS Day? We need to create AIDS awareness, testing and treatment campaigns for YouTube and Facebook that go as thoroughly viral as HIV itself. Let’s leverage the new forms of media to their fullest potential and put frank, accurate information about how to have safe sex onto Tumblr, dating and porn sites to spread the word, not the virus. And can we please use iPads as mobile, handheld med schools? Let’s create a whole series of continuing education about HIV prevention, testing and care and broadcast it to the world’s health care workers via tablets. And let’s galvanize a whole new generation of youthful activists to join the fight. We need to re-engage the worlds of art, music, theater, fashion and design. Looking at galleries, auction houses,
lyrics, MTV, theater and magazines today, one wonders if AIDS is out of fashion. When Larry Kramer accepted his Tony Award earlier this year for Best Broadway Revival for The Normal Heart, the national and international spotlights were, for a brief moment, again on AIDS. We must ask our talented, stylish friends to help us keep it there. Quick, someone call Marc Jacobs, Tim Gunn and Ms. Wintour. AIDS must be in vogue again, literally and figuratively!
5. THE CHURCH We need the blessing of the church. The Roman Catholic
pope, Benedict XVI, has come closer to sanctioning the use of condoms than any other papal leader. While we recognize it’s unlikely he will ever get all the way there, we need to remind him that if he could, it would create a paradigm shift in how we stop AIDS from spreading. We don’t think God wants people to get HIV or die of AIDS. If the pope is a conduit for God’s word, can’t he tell Catholics it’s OK to save their lives and protect others? Denying that people have sex and telling people the only way to protect themselves sexually is to abstain from sex is killing them. This doesn’t seem very Christian, does it? Helping keep the sick alive, however, does. We need to leverage the global network of faith-based organizations of all types to spread the good word about HIV. We should work with churches of all denominations to
disseminate lifesaving information about HIV/AIDS around the world. Faith-based organizations can play an enormously pivotal role in the end of AIDS. They offer safe spaces, are led by trusted elders and are visited by people from all socioeconomic tiers on a weekly, sometimes daily, basis. Leveraging faith is a great way to reach people who do not intersect with the health care system, and it’s a wonderful vehicle to deliver messages of empowerment, health and tolerance. There are far more churches in the world than medical centers. There is also a greater chance of people confiding in their pastor, priest, rabbi, iman or guru than coming clean with
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their medical doctor, nurse or health care provider. Tolerance—of gay people, sex workers, transgender people, injection drug users and other marginalized populations— especially within houses of worship is key to making it possible for those who need medical help to get it. Can we get an “amen”?
6. HUMAN RIGHTS We need to fight stigma, discrimination and the criminalization of people with HIV. Nothing is perhaps harder, or
more critical, than removing the very real emotional barriers to testing, linkage to care, retention in care, adherence and disclosure. It’s difficult enough to face a life-threatening illness. It’s that much harder without the understanding, support and compassion of friends, family, lovers and community. No one who has HIV did anything wrong. There is no shame in having HIV. Those living with HIV who have come to terms with their diagnosis can help newly diagnosed people accept their serostatus and overcome the self- and societally inflicted stigma that beats us down. Everyone living with the virus needs to be educated and empowered to know that there are many good laws protecting against HIV-related discrimination. And we need to ensure that those laws are upheld, that new ones are created as needed and that unjust laws (such as those criminalizing people with HIV) are stricken off the books. And those of us who suffer injustices need to have the courage to come forward and prosecute those who commit the injustices. We need to fight the increased incidence and severity of criminalization of people with HIV. The laws currently in place are sufficient to cover the rare cases in which a person with HIV intentionally attempts to infect another person. There is no need for AIDS-specific laws. They backfire and present hurdles to i nd iv idua l a nd publ ic health. Who would want to get tested for HIV if knowing your status could mean you could be falsely accused of non-disclosure and end up in prison? Criminalization of HI V doesn’t protect anyone, but it does increase the risks for everyone. Pope Benedict XVI, will you help save us?
We need to fight racism in the context of HIV/AIDS and the health disparities it creates. Because of racism, marginalized
populations get disproportionately inadequate health care. No state and no nation should be allowed to offer inequitable health care, or reduced access to people simply because they don’t have as much money or political power as others. The arguments must be clearly made on Capitol Hill that health care is a human right—and everyone deserves equal human rights. Currently, African Americans and Latinos are disproportionately impacted by HIV/AIDS in the United States; they are nine and three times more likely, respectively, to contract the virus than whites. We need to fight homophobia in the context of HIV.
Homophobia is as dangerous as racism and similarly impedes individual health and therefore public health. When we allow large swaths of society to remain sick and when we drive entire populations underground, we give up the opportunity to improve the health of our nation as a whole—and that leaves everyone more vulnerable. Because in the real world, people don’t stay in their corners. People move around and interact. HIV doesn’t know your race, ethnicity, gender, sexual orientation or socioeconomic status. It is a biological agent that can move between any two people who engage in certain activities, and those certain activities have never been the exclusive domain of any one type of person. Sex and drug use seem to be pretty universal. We will never end AIDS if LGBT people around the world don’t feel safe coming forward to get educated about prevention, get tested for HIV and get care if needed.
DREAMSTIME.COM/JOHN HIX
We need to stop talking about HIV in terms of “risk factors.”
We must reframe the way we describe who may be at risk for HIV. While acknowledging that certain groups are at higher risk than others (for example MSM, African Americans, injection drug users, etc.) we must change the misperception that only people at high risk for HIV can contract the virus. The fact is, anyone who has ever had unprotected sex, received a blood product or an organ or shared injection drug equipment may have been exposed to HIV and should be tested. Doctors should no longer use risk-sorted behavior to determine whether or not someone may have been exposed to HIV. Most people should be tested at least once. Some people should be tested regularly. We need to take HIV/AIDS out of its silo and “normalize” the virus/disease. The very thing that helped HIV get
emergency funding in the early days is impeding our ability to end the pandemic: AIDS exceptionalism. We need to mainstream AIDS care. As more people living with HIV globally are tested and diagnosed, we’re going to need a lot more medical care workers. And, most people don’t get diagnosed with HIV in an infectious disease specialist’s office. They discover their status in community health centers, emergency rooms, at the OB/GYN and in other medical settings. We
need a better system for linking people to HIV-specific care and retaining them in it. But we also need the general health care system to be better equipped to handle HIV. Every doctor needs to know how to test for, deliver a diagnosis of and offer basic treatment for HIV. And we need to educate nurses too since in many nations around the world, nurses administer the lion’s share of health care. We need to make testing guidelines clear, make testing more affordable and consider an over-the-counter HIV test. Guidelines that don’t align are confusing to doctors and present an “out” for them to HIV testing. Currently, the Prevention Task Force and the CDC guidelines don’t align. We need to fix this.
7. THE CURE We need to support a research agenda that could fasttrack a cure and a vaccine. We must invest heavily in the sci-
ence that looks so promising at this moment. We are closer than we’ve ever been. According to Kevin Frost, CEO of amfAR, an investment of $100 million in the current cure research could help usher in a cure within five to 10 years. Françoise BarréSinoussi, PhD, who co-discovered HIV, is leading a global consortium of people with HIV and scientists to fast-track a cure; amfAR has a new collaborative consortium (ARCHE) hunting for the cure; and the NIH recently made a five-year, $70 million pledge. What we now know about broadly neutralizing antibodies, CCR5 inhibitors, HIV reservoirs and so much more makes this the time in AIDS research when careers are made, Nobel Prizes are won and the course of history is changed. To sum it all up, AIDS needs a modern elevator speech—
a compelling statement any of us could blurt out if we found ourselves, say, face-to-face with the president of the United States or any other world leader. We should all be able to answer the question: Why must the world end AIDS? Inspired by what Chris Collins, vice president and director of public policy at amfAR, told us he’d say if he found himself in an elevator with the president, we suggest the following: “Mr. President, U.S.-funded science indicates the end of AIDS is now possible in our lifetime. Studies recently revealed that antiretroviral treatment for AIDS doubles as prevention. People with HIV on pills have a 96 percent reduction in odds of transferring the virus. If we significantly expand access to HIV treatment at home and abroad, we will save tens of millions of lives, slow and eventually stop the spread of the virus, and preserve billions of federal/taypayer dollars. With the right strategic shifts in current resources and an influx of foreign aid from nations who stand to benefit from the end of AIDS, we could see HIV incidence and expenditures decline dramatically in as few as five years. Jump-starting the end of AIDS is a terrific legacy for your administration. Scaling up treatment means scaling up saving lives.” Or, more simply put, the answer to why the world must end AIDS is, “Because we can.” ■
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HEROES
BY LAUREN TUCK
Defying Gravity Orbit Clanton was diagnosed with HIV in 1982. Skeptical about the accuracy of the antibody test—in part because his supposed monogamous partner received a negative result—Clanton ignored his positive status and did not seek treatment for nearly 20 years. A trip to the emergency room forced him to come to terms with his diagnosis. Despite the fact he had developed AIDS, Clanton not only survived, but with the help of his faith and religion, he also thrived. Today, he is the co-founder and deputy executive director of Perceptions for People with Disabilities (PPD). PPD is a New York City–based organization that serves the doubly disenfranchised community of people who are living with HIV/AIDS and are either visually impaired, hard of hearing or mentally challenged. The program helps its clients become socially independent and selfsufficient by connecting them with appropriate care and support. In addition to his daily devotion to PPD, Clanton commits his limited free time to teaching computer skills at Iris House (an AIDS service organization in Harlem) and serving as president of the Healing Hope AIDS Ministry at his local church. What three adjectives best describe you? Christian, empathetic, candid. What is your greatest regret? My life has turned out as God destined it to be. But if I had to address this question several decades ago, my response would have been, “Contracting HIV.” What is the best advice you ever received? My parents used to quote Shakespeare’s Hamlet, “To thine own self be true.” It inspired me to navigate life’s path to find happiness and peace. What drives you to do what you do?
My faith and belief in God. When I was diagnosed, antiretroviral therapy treatments weren’t available, and life expectancy from diagnosis to death was only two years at best. But look at me now—29 years later and I am still alive! That’s what drives me each day. What person in the HIV/AIDS community do you most admire?
My business partner and co-founder [of PPD] Anthony Richardson. He is legally blind, hard of hearing and HIV positive. Despite these handicaps he has never given up or lost his determination to see our organization be successful.
My 13-year-old cat Cassondra because she is my baby. If I could run back in I would get my external hard drive, laptop, BlackBerry, Bible and meds. For more info, visit perceptions4people.org.
STEVE MORRISON
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
SURVEY HIV and Your Heart It’s no secret that both HIV and antiretroviral treatments are linked to increased risks of cardiovascular disease, including heart attacks and strokes. However, there are many ways to protect your heart if you’re HIV positive, such as selecting antiretrovirals carefully, monitoring your lipid levels and doing your best to control classic risk factors like high blood pressure, smoking, diet and stress. Please take our confidential survey and tell us about your heart health.
1
2
Would you say that you are currently:
❑ Underweight ❑ Overweight
❑ Average weight ❑ Obese
10
Are you currently taking HIV medications?
11
Which HIV meds do you take? (Check all that apply.)
12
What year were you born? ________________
13
What is your gender?
14
What is your sexual orientation?
15
What is your ethnicity? (Check all that apply.)
How often do you exercise (walk, run, work out in a gym) for more than 30 minutes at a time?
❑ Never ❑ Once to four times a month ❑ Once or two times a week ❑ Three to four times a week ❑ Five to six times a week ❑ Every day
3
How many cigarettes do you smoke?
4
How healthy is your diet?
5
Do you have a history of heart disease in your family?
6
❑ I don’t smoke ❑ I smoke occasionally ❑ Up to 10 cigarettes a day ❑ Up to 20 cigarettes (one pack) a day ❑ More than one pack a day ❑ I am a former smoker ❑ Poor ❑ Fairly healthy
❑ OK ❑ Very healthy
❑ Yes ❑ No ❑ I don’t know
Do you have high blood pressure or high blood cholesterol?
❑ Neither (Advance to question 10.) ❑ High blood pressure ❑ High blood cholesterol ❑ Both
ISTOCKPHOTO.COM/TAMARA MURRAY
7
Are you trying to lower your blood pressure or cholesterol by exercising and eating healthy foods?
❑ Yes
8
Has your doctor prescribed medications for high blood pressure or high blood cholesterol?
❑ Yes
9
❑ No
❑ No
Have you ever had a serious heart problem, such as a heart attack or stroke?
❑ Yes
❑ No
16
❑ Yes
❑ No (Advance to question 12.)
❑ Aptivus (tipranavir) ❑ Atripla (efavirenz + tenofovir + emtricitabine) ❑ Combivir (zidovudine + lamivudine) ❑ Complera (rilpivirine + tenofovir + emtricitabine) ❑ Crixivan (indinavir) ❑ Edurant (rilpivirine) ❑ Emtriva (emtricitabine) ❑ Epivir (lamivudine) ❑ Epzicom (abacavir + lamivudine) ❑ Fuzeon (enfuvirtide) ❑ Intelence (etravirine) ❑ Invirase (saquinavir) ❑ Isentress (raltegravir) ❑ Kaletra (lopinavir + ritonavir) ❑ Lexiva (fosamprenavir) ❑ Norvir (ritonavir) ❑ Prezista (darunavir) ❑ Rescriptor (delavirdine) ❑ Retrovir (zidovudine) ❑ Reyataz (atazanavir) ❑ Selzentry (maraviroc) ❑ Sustiva (efavirenz) ❑ Trizivir (abacavir + zidovudine + lamivudine) ❑ Truvada (tenofovir + emtricitabine) ❑ Videx (didanosine) ❑ Viracept (nelfinavir) ❑ Viramune (nevirapine) ❑ Viread (tenofovir) ❑ Zerit (stavudine) ❑ Ziagen (abacavir)
❑ Male ❑ Transgender ❑ Straight ❑ Bisexual ❑ ❑ ❑ ❑ ❑ ❑ ❑ ❑
❑ Female ❑ Other ❑ Gay/lesbian ❑ Other
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): ________________
What is your ZIP code? ________________
Please fill out this confidential survey at poz.com/survey or mail it to: Smart + Strong, ATTN: POZ Survey #175, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424