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The Lady Is a Champ Standing Congresswoman Barbara Lee fights Strong Against for us on Capitol Hill Hate and HIV
David Kuria of the Gay and Lesbian Coalition of Kenya fights homophobic hate crimes in Africa.
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ON THE HILL
Watch a video of U.S. Rep. Barbara Lee (D–Calif.) at poz.com/tv as she explains her proposed legislation to prevent HIV transmission in prison and eliminate HIV criminalization. Read our feature story on Lee on page 24 of this issue.
POZ EXCLUSIVE IDENTITY AND RISK
New research led by Gregorio A. Millett, MPH, uncovers mistaken assumptions fueling HIV among black and Latino men who have sex with men. Read our story on poz.com.
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Michael Tikili talks about the growing HIV crisis among young black MSM.
24 WASHINGTON WARRIOR Congresswoman Barbara Lee fearlessly leads the charge for people with HIV on Capitol Hill as tens of millions of lives hang in the balance. Why you need to know who she is, and what you can do to keep our champion fighting. BY REGAN HOFMANN 30 FORGOTTEN SONS Rates of HIV among young black men who have sex with men continue to rise. The problem is not so much what young black men are doing but rather what is being—and what has been—done to them. And what hasn’t been done for them. BY TOMIKA ANDERSON
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7 FROM THE EDITOR
18 WE HEAR YOU
20 WHAT MATTERS TO YOU
On ending AIDS, refocusing prevention and praising hero Orbit Clanton
10 POZ Q+A
Michel Sidibé weighs in on UNAIDS’s new vision to get to a world without HIV.
12 WHAT YOU NEED TO KNOW
HIV-related discrimination in the workplace • White House “just says no” to legal pot • disclosure may not keep you from jail • AIDS traced to chimp hunters in Africa • AIDS memorial park proposed in New York City • how teens have sex
Your insights on dating with HIV How to keep your heart healthy
22 TREATMENT NEWS
Drink cups of coffee to help battle hep C coinfection • a vaginal gel blocks HIV—and herpes • hormonal contraceptive shots raise HIV risk • where you live in the United States influences how well you live with HIV • don’t kid around with your kidneys • Isentress rash warning
36 POZ HEROES
Live from WHIV: DJ Jimmy P runs an Internet radio station to educate about the virus.
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. 177. POSTMASTER: Send address changes to POZ, PO Box 8788, Virginia Beach, VA 23450-4884. Copyright © 2012 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, REED VREELAND EDITORIAL ASSISTANTS CONTRIBUTING WRITERS
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ONGRESSWOMAN BARBARA LEE (D–CALIF.) HAS BEEN A relentless warrior for people with HIV/AIDS since she first came to Washington, DC, in 1998. Her dedication to the cause is unparalleled in Congress. But it’s her willingness to attack the often ugly drivers of the epidemic that distinguishes her in my mind. Lee broaches the tough issues few want to discuss—the real-life factors that perpetuate the spread of HIV. She speaks up about the need for condoms in prisons and comprehensive sex education in schools. Poverty and how it drives up the rate of HIV infections. The criminalization of people with HIV. Disparities in health care based on the color of your skin. The impact of homelessness on our inability to link people to care and keep them there. And she doesn’t just raise issues—she resolves them. Lee led the charge on the bill that removed the travel ban on people with HIV entering the United States (a large part of why the United States will host the International AIDS Conference this summer). She spearheaded the effort to legalize needle exchange. And on and on. Sitting in the House gallery and watching her in action, I wonder what inspires a person to repeatedly bring controversial bills to the floor, bills that represent the rights of people who are often disenfranchised and who therefore lack leverage among the people whose decisions determine the fate of their lives. It’s the age-old quandary faced by all in Congress: How do you do the right thing for the people you are representing while managing to keep your largest political donors happy so you can get re-elected? Because you can’t help people if you don’t get re-elected, but it’s harder to get re-elected if you too often help those whose needs may be at odds with those of your wealthiest donors. Our political system is broken. It doesn’t enable our elected representatives on Capitol Hill to have the latitude and length of term to truly effect social change. When the Supreme Court voted in 2010 that corporations can give unlimited funds to members of Congress, it meant that the special interests of the wealthiest donors would drive the political agenda. And those wealthy donors typically are companies that produce things like prescription drugs, oil, financial services, technology and weapons of war. They rarely serve vulnerable populations. Which is why an ally like Lee is essential to our survival. And why I decided to make sure you all know who she is. (Read about her on page 24.) Others on the Hill champion our cause. But few have done as much as Lee. I want to thank Lee for her extraordinary leadership on HIV/AIDS. If you would like to thank her too, visit her website at lee.house.gov and send her a note. One of the best insurance policies we can have for our health is to ensure that those who represent us on the Hill speak truth to power and fight for our freedom from HIV. Congresswoman Lee does both, beautifully.
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education, [expanded] availability of condoms and [improved HIV] education in general. JONATHAN NEW HAVEN, CT
Standing Strong Against WHATHIV WE NEED TO END AIDS Hate and
David Kuria of the Gay and Lesbian Coalition of Kenya fights homophobic hate crimes in Africa.
ENDING AIDS In “R.I.P. HIV” (October/ November 2011), POZ editor Regan Hofmann discussed current research and treatment breakthroughs then outlined how laying AIDS to rest is now possible. I can’t help but wonder if a shift in thinking might ultimately occur if all HIV-positive people would decide to come out of the shadows and disclose— particularly those who are public ﬁgures. BETSY YUNG BURBANK, CA
We need to fund the AIDS Drug Assistance Program and get more than 6,000 people in the United States off the ARV [antiretroviral treatment] waiting list. We [also] need policy change— [more comprehensive] sex
of POZ readers are coinfected with HIV and hepatitis C.
This is great news and a hopeful article, but seeing the hard copy magazine I am disappointed in the cover image you chose to run. Putting a huge “X” through the red ribbon gives the wrong impression. I was immediately taken aback seeing an X over something that stands for AIDS awareness, support and solidarity. The inside image of an X over a medicine bottle or the image you ran online of the virus would have made a much more appropriate cover image. STEF NEW YORK CITY
REFOCUSING PREVENTION In “High-Impact Prevention” (October/November 2011), the CDC’s Kevin Fenton, MD, discussed a new approach to prevent HIV in communities most at risk, particularly young black and Latino men who have sex with men. [Fenton says that] “gay leaders need to re-engage and make HIV prevention a key component of their
agenda.” Finally, someone is at least alluding to the gay community’s role in the resurgence of HIV as a problem. It’s about time. MITCH CITY AND STATE WITHHELD
You have to be careful with this message. Telling men on ARVs that they are less likely to transmit HIV will make them more likely to have unprotected sex. Draw your own conclusions. GREG DAYTON, OH
I agree that in the early days of HIV, outreach to gays did slow the progression of the virus. You need to bring that back. As you look at high infection [rate] areas such as mine, with mostly blacks, you will not see the outreach you had in the early days. There are [few] CBOs [community-based organizations] to do the job. Don’t expect the Department of Health to get the dollars where they need to be. It’s not happening. ROBERT-LEE THOMAS BROOKLYN
SOARING POSITIVITY In “Defying Gravity” (October/November 2011), Orbit Clanton talked about his religious faith and his work with HIV-positive people who
also have mental or physical disabilities. I’m proud of my good friend, Orbit. He inspires me when I feel sorry for myself. Orbit is a great role model for our community. I was smiling when you asked him about his beloved cat Cassondra— his “baby.” PATRICIA SHELTON THE BRONX
Corrections: In “A Peek Into the Pipeline” (October/November 2011), the correct spelling of the manufacturer of the entry inhibitor cenicriviroc is Tobira Therapeutics. In “Defying Gravity” (October/November 2011), we reported that Orbit Clanton stated he was diagnosed with HIV in 1982 through an HIV antibody test. However, researchers didn’t begin isolating the virus responsible for AIDS until 1983, and the ﬁrst HIV antibody test didn’t become commercially available until 1985. Although there were no HIV tests available in 1982, Clanton’s doctors at Johns Hopkins conﬁrmed that he had gay-related immune deﬁciency, or GRID, which would later be renamed “AIDS.” Beginning in 1984, AIDS was identiﬁed as a medical condition caused by HIV.
How long ago were you diagnosed with hepatitis C? 5% LESS THAN ONE YEAR AGO
reason people are not on treatment for hepatitis C?
28% 1–5 YEARS AGO 22% 6–10 YEARS AGO 45% MORE THAN 10 YEARS AGO
They are waiting for new drugs to become available. Source: POZ September 2011 Survey
poz.com JANUARY/FEBRUARY 2012 POZ 9
THE POZ Q+A
BY REGAN HOFMANN
What targets were established at last year’s high level meeting on HIV/AIDS?
The U.N. Political Declaration on HIV/ AIDS has committed to: cutting [the rate of] sexual transmission of HIV in half; cutting transmission of HI V among people who inject drugs in half; ensuring that no children are born with HIV and that 15 million people living with HIV have access to lifesaving treatment; cutting in half the number of deaths due to tuberculosis among people living with HIV; and meeting global AIDS resource needs of $22 billion to $24 billion per year. Is the treatment goal of “15 million people in care by 2015” feasible?
Michel Sidibé believes we can get to a world without HIV.
I am convinced that we can [do it,] but it will not happen overnight. The AIDS response already has delivered one of the greatest success stories in public health. Now we need a second wave of activism, political commitment and community mobilization to make “15 by ’15” a reality. It will take a concerted effort from a broad range of constituencies—from world leaders, politicians and civil society to communities, families and individuals. “15 by ’15” is ambitious, but it isn’t idealistic; 1.4 million people living with HIV newly started treatment in 2010, representing an increase over 2009 even though available resources flatlined.
A World Free of HIV? Michel Sidibé explains how UNAIDS’s new goal of zero new HIV infections, zero HIV-related discrimination and zero deaths from AIDS are all within reach.
ICHEL SIDIBÉ HAS BEEN EXECUTIVE DIRECTOR OF THE Joint United Nations Programme on HIV/AIDS (UNAIDS) and under secretary-general of the United Nations (U.N.) since 2009. Last year, he brainstormed with global leaders about how we get to a world without HIV. The answer? In part, a massive scale-up of treatment access. Currently, only 6 million of the estimated 34 million people living with HIV are on treatment. The United Nations has boldly proposed that 15 million people with HIV be treated by 2015 as doing so would save millions of lives and prevent millions of new cases of HIV. Here, Sidibé shares his thoughts on how the world can start to end AIDS.
10 POZ JANUARY/FEBRUARY 2012 poz.com
First, there is a need for sustainable, longterm investments to close the resource gap. We are working hard to usher in a new compact of shared responsibility. Second, we need to optimize new approaches to service delivery that are cost-effective and reach the people and communities most in need. We are working closely with Jeffrey Sachs and the Earth Institute to mobilize more than 1 million community health workers in Africa by 2015. Third, we need to leverage science, technology and innovation—and ensure that breakthroughs are affordable and accessible. This is why I have called for “Treatment 2.0”—the next generation in HIV treatment. It is the road map to
COURTESY OF UNAIDS
What are the biggest barriers to this goal?
breaking the trajectory of costs, delivering better drugs through more effective and efficient ways, better testing and diagnostic approaches, and mobilizing communities. But above all, we need to address the scourge of stigma and discrimination against people living with HIV and the populations most at risk for HIV that keeps people from getting tested, from accessing services and from demanding their human rights. Will “15 by ’15” have a significant impact on new HIV infection rates?
Major research breakthroughs have reconfirmed the essential role that ARVs play in the AIDS response. The HPTN 052 trial showed that when a person living with HIV adheres to an effective treatment regimen, the risk of transmitting the virus to their uninfected partner can be reduced by 96 percent. Supporting 15 million people in accessing treatment is a critical first step [to having a] major effect on reducing new HIV cases. Models suggest that one third or more of all HIV cases could be avoided if all those eligible under current guidelines receive effective treatment. Treatment for prevention should be available for all people living with HIV in a partnership with a person without HIV, who want to use this as a prevention option. The United States has allocated more money than any other nation in fighting global AIDS. What can be done to encourage other nations to contribute?
The success of the global AIDS response has been a profound reflection of American vision and leadership. In 2010, the U.S. accounted for 54 percent of total donor disbursements—directly saving millions of lives and preventing millions of new infections. This is not the time to put recent investments at risk. We need to come together to invest now or resign ourselves to paying much more in the future. Financing the AIDS response is a shared responsibility, and it’s a smart investment. In 2010, funding for international AIDS assistance provided by
donor governments declined by 10 percent, marking the first time year-toyear support has fallen in more than a decade. Countries, rich and poor, have to look beyond the near-term costs and recognize the long-term benefits [of investing in the end of AIDS]. It is clear that the poorest nations, in particular those in Africa with the highest HIV burden, will not be able to shoulder investments in the AIDS response by themselves. They will have to rely on international solidarity—and they must be able to count on it. I am in discussion with leaders, heads of state, CEOs and civil society to develop a compact of shared responsibility for the response. The cost will start to fall
unacceptable. They pose real setbacks to the AIDS response, and they are detrimental to the cohesion and development of our societies overall. Education about HIV and dispelling myths remain essential. Responding to stigma needs to be embedded in cohesive national HIV policy. Legal and policy responses need to be put in place to remove HIV-related stigma and discrimination. To eliminate stigma and discrimination, UNAIDS is rolling out its Stigma Index as part of a collaborative partnership with networks of people living with HIV and civil society organizations in over 60 countries. It provides the basis to monitor and address HIV-related stigma and discrimination more systematically.
“The success of the global AIDS response is a reflection of American leadership.” after 2015. The returns of our commitments today will pay off in multiples for the generation to come. Virtually all countries can do more within their relative wealth. Some of the large emerging economies have the ability to finance their own response to AIDS and increasingly support others that have greater needs. South Africa has dramatically increased its domestic spending on AIDS as have China and Russia. The BRICS countries [Brazil, Russian, India, China and South Africa] and other emerging economic powers are bringing a new voice, a new perspective and new solutions to today’s global challenges. These countries have a unique opportunity to accelerate access to affordable medicines and commodities, to share solutions across the global South and to promote a new deal for shared responsibility. What needs to happen to reduce the stigma around HIV/AIDS?
Stigma and discrimination based on HIV status or sexual orientation are
How critical is grassroots advocacy on the part of the HIV community to get a nation to step up its funding for AIDS?
As we all know, the AIDS response has not been a traditional public health campaign—it has been, and remains, a global movement in demand of social justice, led by people living with and affected by HIV. From the earliest years of the epidemic, networks of A IDS activists and ser vice organizations stimulated public awareness, financial commitment, scientific investment and progressive dialogue on stigma and discrim ination and the creation of new institutions to respond to the disease— and most of all, political commitment to respond. The commitment of our leaders will only be sustained if matched by activism and commitment at the community level. Today, the AIDS response needs a new generation of leadership—leadership that reflects both the epidemic and its solutions, that is, from affected countries, communities and young people. ■
poz.com JANUARY/FEBRUARY 2012 POZ 11
WHAT YOU NEED TO KNOW
BY CRISTINA GONZÁLEZ
Keeping people with HIV employed will boost the economy.
HIV-Related Discrimination in the Workplace
In the United States and abroad, a barrage of incidents reveals that HIV discrimination in the workplace remains rampant. Consider: ●
In Florida, the Transportation Security Administration (TSA) refused an Air Force veteran a job because he was HIV positive. (The TSA has since reached an agreement with the American Civil Liberties Union to review its job policies for job applicants with HIV.)
In Utah, a convenience store chain is paying damages after firing a clerk two weeks after learning he was HIV positive.
In Pennsylvania, a staffing firm violated federal law by withdrawing an offer of employment to a certified nursing assistant because he was HIV positive, even after a doctor cleared him to perform all job duties.
In Mexico, an HIV-positive man was forced to sign resignation papers after employers found out about his status.
In Swaziland, civil regulations ban pilots who have HIV or tuberculosis from flying planes from the only commercial airport in the town of Manzini.
What does this mean? A huge economic and social loss. If those of us living with a costly, chronic illness are forced into unemployment, we lose not only our health insurance, but also our ability to contribute (through taxes) to the welfare programs we’re being forced into. Discrimination is not only wrong, it also detracts from the bottom line for both people living with HIV—and the societies in which they live .
12 POZ JANUARY/FEBRUARY 2012 poz.com
In response to a petition to legalize and regulate marijuana, the White House said there is yet no scientific data to support legalization and that pot does not yet meet the modern standard for safe or effective medicinal use. However, it seems Colorado didn’t get the memo. It became the first state in the nation to issue business licenses for medical marijuana dispensaries and the makers of marijuana-infused products. Now that’s what we call a Rocky Mountain high.
Disclosure May Not Keep You From Jail
A Minneapolis man was found guilty of transmitting HIV despite informing his partner he was positive. Say what? Disclosing your status to your partner and then engaging in consensual sex can still lead to jail time? Horrifyingly, yes. In this case, the Minnesota jury convicted the man on a statute that criminalizes the “transfer of blood and sperm… except as deemed necessary for medical research.” Our ruling: We need a massive overhaul of HIV criminalization laws.
(OUT OF WORK) ISTOCKPHOTO.COM/ANDREA ZANCHI; (JOINT) ISTOCKPHOTO.COM/JEAN PHILIPPE COCHET
White House ‘Just Says No’ to Legal Pot
HOT DATES / February 7: National
(AIDS PROTEST) REDUX PICTURES/THE NEW YORK TIMES/EAL BOENZI; (CONDOM) ISTOCKPHOTO.COM/KIM GUNKEL; (CHIMP) ISTOCKPHOTO.COM/JENS KLINGEBIEL
From left: Lawmakers Jim McDermott, Barbara Lee and Trent Franks go to bat for AIDS issues.
A Walk in the Park to Remember
The Queer History Alliance has proposed turning Triangle Park in New York City across from the former St. Vincent’s Hospital—the epicenter of the epidemic’s early days—into an AIDS memorial. While the local community board has yet to approve plans, the memorial would include a park landscaped to evoke the shape of the AIDS ribbon, as well as a museum and educational space.
AIDS Traced to 3 Chimp Hunters in Africa
According to the new book The Origin of AIDS, HIV in humans can be traced back to about 80 chimpanzees in Africa that infected about three bush-meat hunters around 1921. The virus was further spread through the use of non-sterile medical equipment. Mystery solved! Or is it? Search “The Origin of AIDS” at poz .com to read an interview with author Jacques Pépin, MD, an infectious disease specialist, to find out.
Black HIV/AIDS Awareness Day
How Teens Have Sex
While many adults prefer to deny it, teens are having sex. And one grown-up organization has taken its head out of the sand: The American Academy of Pediatrics (AAP) changed its guidelines to suggest HIV testing for all 16- to 18-year-olds living in areas of the country with high prevalence rates. Attacking the problem from a different angle: U.S. Representative Barbara Lee (D–Calif.) and U.S. Senator Frank Lautenberg (D–N.J.) have introduced a bill to expand sex education in schools nationwide and to promote programs that combine information on abstinence and contraception. If the bill passes, and the new guidelines are heeded, we may see an HIV-free generation after all .
poz.com JANUARY/FEBRUARY 2012 POZ 13
BY REED VREELAND
Lessons in Love
With Valentine’s Day upon us, we ask: How does the dating game change after an HIV diagnosis? In her POZ Blog entry “My Reality Check: Dating With HIV,” our Anonymous blogger appealed to our website’s readers seeking advice for how to handle a newly budding romance. She shared that she struggled with disclosure and feared being rejected because of her newly diagnosed HIV status. The consensus? While stigma and ignorance are still pervasive, finding love with HIV is indeed possible. If you’re ready to connect with HIV-positive singles, check out personals.poz.com. In the meantime, here’s some insight from readers on the subject of dating, love and HIV.
I’ve been positive for a decade and a half, and there is no easy answer to this question: Do you disclose up front and perhaps lose any chance of this man getting to know you, or do you wait till you are both emotionally invested and risk possible heartbreak and losing him? Really, only you can decide how to best proceed on a date-by-date basis. Every potential partner is going to react differently. [But] plenty of people out there won’t care about your status; often they know someone [else] who has [HIV]. —Dreamer, location withheld I have been positive 21 years, and [in my experience] we have to become comfortable with our own diagnosis before we expect others to be. This is very vital in disclosing to anyone. It helps build stamina for the journey. Not everyone is nor will be accepting of our diagnosis and the personal views we may share going through it—so we have to be mentally prepared for the good, the bad and the ugly as it comes. —Bonetta Graves, Sumter, SC
I have been HIV positive since 1985. In 2009, I married an HIV-negative man whom I dated for some time before I told him. I got to know him [and] made sure I could trust him. [When I disclosed] he did not reject me. The irony is he died of a heart attack last February when I had been preparing him [on] how to deal with my death. My advice is [to] take it slow, get to know someone. If you don’t know them well enough to tell them your status, you probably shouldn’t take them home. —Jane, location withheld I guess it’s rejection that really scares us. People take rejection differently—even when I was [HIV] negative I had some of that fear of being rejected. Then after I found out that I am positive, this fear of rejection has kept growing and growing. But now I am getting to a point where enough is enough. If you don’t ask, you won’t know. So I am preparing myself to go back to the dating scene. —Mike, Toronto, Ontario Now I only date men from all the HIV sites who are also positive—it’s just so [much] easier. I even met my current husband on one of the sites. It is a rare and special person who can accept our situation. But for me, the rejections were just so hurtful, and I was always fearful that someone would tell someone and so on and so on. —PJ, location withheld What I do normally [with a potential romance] is watch A Walk to Remember where Mandy Moore dies of leukemia. It’s extremely romantic because the guy stays with her even after finding out she is terminal. This is a good opportunity for you to say, “Aww, wasn’t that sweet? Do you think you could be with a woman that was ill, like a woman with cancer?” If he says “No,” don’t give up hope. Just proceed with caution. —Jason Cifredo, Orlando
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WHAT MATTERS TO YOU
BY TIM MURPHY
Keeping Your Ticker Ticking
For some people, living with HIV can mean working extra hard to have a healthy heart.
im Hunter, a 50-year-old counselor at Hyacinth AIDS Foundation in New Jersey, has vastly improved every aspect of her life—except her heart health. In the past 13 years, Hunter, who was diagnosed with HIV in 1988, has completely reinvented herself. At one time, she was a heroin addict who served nine years in state prison. Today, she is a college-educated, clean-and-sober counselor and mentor to other HIV-positive folks with similar lives and histories. “If I can help someone else by sharing a little bit of my journey, that’s a good thing,” Hunter says in her deep, in-control voice. Her turnaround has been nothing short of remarkable. The armed robbery that landed her in prison in 1989 was an attempt to get drug money. But once behind bars, she not only got sober—she also got her GED. Upon release, she worked at a
20 POZ JANUARY/FEBRUARY 2012 poz.com
series of human-services jobs, and now she carries the title Manager of the Office for Women’s Health at Hyacinth. But there is one aspect of life Hunter just can’t get under control. It’s not her HIV, which has been well managed on meds for many years now. It’s her lipids, the blood fats that can signal our risk of heart disease and heart attacks. For years now, Hunter’s lipid labs have been less-than-stellar. Three months ago, her triglycerides were 160, when less than 150 is ideal. Her HDL, or “good” cholesterol, was 36, when the ideal is 60 or higher. Her LDL, or “bad” cholesterol, was 114, when the ideal is below 100. Why the mediocre grades? Hunter, who is 5'5" and weighs 197 pounds, admits she doesn’t exercise regularly. She and her life pa r tner—Donna Smith, a social worker—eat mainly healthful foods such as chicken and
Kim Hunter is healthy, happy—and working to boost her heart health.
fish, brown rice, vegetables and salad. But “I do like peanut-butter crackers, black cherry soda and the occasional T-bone steak,” she says. Plus, Hunter has hepatitis C, which also increases the risk of cardiovascular disease. (It’s important to note, too, that heredity plays a role in weight, making it harder for some people to trim down. It’s not all about will power.) Hunter concedes she needs to confer with her doc about possibly taking a cholesterol-lowering statin drug. New research suggests that’s a good idea: A study released this past October, published online by PLoS One, found that HIV-positive folks with both a waist size and triglyceride count above certain cutoffs (see “Measure Up,” right) were at higher risk for cardiovascular disease than their HIV-positive peers with no more than one of those numbers above the cutoff. Another big problem? Hunter smokes about a pack of cigarettes a day. She knows there are resources out there to help her quit, including the patch, nicotine gums and lozenges, smoking-cessation groups—even e-cigarettes (though such vaporizing nicotine-delivery devices remain controversial). “I was referred to a program, but I never followed up,” she says, admitting that she’s loath to quit. “I’ve given up everything else. But I would say it’s very uncomfortable to be a smoker when I’m counseling people all day on health and wellness.” Other than that stubborn habit, Hunter says, life is pretty good. Besides her fulfilling job, she and Smith just went on a cruise to celebrate her Big 5-0. They have a time-share in the Poconos. And they are die-hard Yankees fans. (Hunter cheers on Granderson and Cano; Smith likes Teixeira and Jeter.) With a little prodding, Hunter has come up with a four-point plan to improve her heart health, including improving communication between her HIV doctor and her primary doc, considering going on a statin, finding a fun exercise plan to bring her weight down and giving the smoking-cessation program a real try. “I have to start taking care of me first before I take care of others,” she says.
HOW TO: Preserve Your Heart Health IT’S BETTER TO BE ON HIV MEDS. True, some HIV meds are linked to higher cholesterol levels. But research shows that, overall, people who go off their HIV meds have higher heart risk than those who stay on. “That’s likely due to the inflammation caused by unsuppressed HIV,” says HIVcardio expert James Stein, MD, of the University of Wisconsin Department of Medicine. If your cholesterol level worsens after starting HIV meds, talk to your doctor. You could tweak the regimen, or you could… CONSIDER TAKING STATINS. These drugs have proved remarkably effective in correcting cholesterol counts. Some interact negatively with HIV meds (for example, Zocor/simvastatin and Mevacor/lovastatin interact with protease inhibitors). But HIV doctors are prepared. “We tend to use low doses of Lipitor [atorvastatin] or Crestor [rosuvastatin],” Stein says. QUIT SMOKING—PERIOD. Even one cigarette a day triples your risk of heart disease. Yes, it’s hard. “The average person tries to quit five to seven times before [succeeding],” Stein says. “Plus, it’s easier to do it in a group.” Google and call around to find one near you. (You can also discuss with your doc drug options like nicotine gum and patches—generics tend to be a bit cheaper than brand name products—and pills such as Zyban/ bupropion and Chantix/varenicline.) BREAK A SWEAT. “Find some activity you actually enjoy and do it between 30 and 60 minutes, five times a week, to the point where you break at least a light sweat and can talk while doing it, but not sing,” Stein says. “Go to a gym or do something at home or outside.” TWEAK THE DIET. Increase fruits, vegetables, lean proteins such as chicken and fish and whole grains like
brown rice and oatmeal—and reduce anything fried, greasy, fatty or sugary. “Don’t go to the supermarket hungry, and hit the fruits and vegetables first,” Stein says. “Make sure half of your plate is fruits or veggies, a quarter protein and a quarter whole grain.” Many HIV clinics have dieticians or nutritionists to help you draft a plan.
Measure Up In October, Italian and Canadian researchers reported that HIVpositive men with a waistline of 35.5 inches or higher and a triglyceride level above 175 were at increased risk for cardiovascular disease (CVD), compared with HIV-positive men with lower measurements. HIV-positive women with both a waistline above 33.5 inches and a triglyceride level above 130 were at increased risk. Other conditions enter the picture too. These folks were more likely to have classic risk factors for CVD including: ●
Type 2 diabetes
An increased Framingham Risk Score (which computes factors including cholesterol, sex and age to assess heart-attack risk)
Metabolic syndrome (increased blood pressure, high bloodsugar level, abnormal cholesterol levels and excess body fat around the waist)
Next time your doctor gives you a triglyceride count, also ask to have your waistline measured, too. “It’s not commonly done, but it’s easy,” says Marshall Glesby, MD, an HIV researcher at Weill Cornell Medical College in New York City. If you’re over the healthy limit, strategize with your doctor about ways to trim abdominal girth and use diet and possibly meds to control triglyceride levels.
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BY LAURA WHITEHORN
Vaginal Gel Blocks HIV— and Herpes A microbicide gel containing ining the HIV drug tenofovir (found in Atripla, Complera, Viread iread and Truvada) has been shown wn to be somewhat of a barrier to HIV. But it also offers the positive side effect of blocking ocking herpes, too. In fact, while it reduces the chance of HIV transmission by 39 percent, cent, it reduces the chance you’ll contract herpes by 51 percent. It’s important to notee that only the gel, not the pill form of tenofovir, ofovir, produces this result. The gel is not yet available, but given its harm reduction ability, we’re hoping it hits the streets soon.
Java offers a jolt for hep C treatment.
Struggling With Your Hep C Treatment? Grab a Cup of Joe. Are you coinfected with hepatitis C? If you’re battling daily to keep taking your HIV meds and the drugs for hepatitis C treatment, consider pouring on the coffee. As we’ve previously reported, coffee has been shown to help slow the progression of liver disease and improve chances for some people to clear hepatitis C with treatment. Now it turns out that drinking three or more cups a day helps people overcome some of the treatment’s nasty side effects too. Not to mention that the extra caffeine may give you an energy boost and put an extra spring in your step. If you are having trouble taking your meds for either virus, ask your doctor or clinic for help. Good adherence is essential to fight both viruses. So treat yourself to a large cup of joe and keep your viruses at bay.
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The injectable contraceptive Depo-Provera doesn’t just fail to protect against HIV—it actually raises the risk of giving and getting the virus during vaginal sex. How much? Women using the injections may be about twice as likely to contract HIV from HIV-positive sexual partners. And HIV-positive women who use injected or oral hormone-based contraceptives have about a two-times greater risk of transmitting HIV to negative partners. It’s not the first bad press for injectable contraceptives. In the United States, controversy has surrounded Depo-Provera and Norplant for years, partly because women on welfare were being coerced to take the shots. One Depo dose prevents pregnancy for three months; Norplant for five years.
Hormonal Contraceptive Shots Raise HIV Risk
“The role of the criminal justice system as an important factor driving the AIDS epidemic suggests a strong correlation between high arrest and incarceration rates and high HIV prevalence within many African-American communities.” —Ernest Drucker, A Plague of Prisons: The Epidemiology of Mass Incarceration in America (The New Press, 2011).
(COFFEE) GETTY IMAGES/GROVE PASHLEY; (GEL) ISTOCKPHOTO.COM/SIMONE ANDRESS; (SYRINGE) ISTOCKPHOTO.COM/JAMES MCQUILLAN; (MAP) DREAMSTIME.COM/USTERP; (KIDNEY) DREAMSTIME.COM/BOBYRAMONE
Don’t Kid Around With Your Kidneys Do you have HIV? Are you African American? Then tune in to some must-see videos all about kidney health at poz.com/kidneys. The videos teach about HIV and your kidneys—from both ends of the stethoscope. Theresa Mack, MD, tells you how to keep your kidneys healthy, and Mechelle Jones shares what it’s like to live with HIV and kidney disease.
Geography Trumps Fate Where you live in the United States has everything to do with how well you live with—and your odds for surviving—HIV. People with HIV who live in the South are as much as two times likely to die prematurely than those living with the virus in other states. The highest rates of mortality for positive residents can be found in: Mississippi, North Carolina, Tennessee, Louisiana, Georgia, South Carolina and Florida. The lowest: Idaho, Colorado, Connecticut, Utah, Minnesota and Wisconsin. New York, which has the country’s largest population of people living with HIV, did OK on mortality risk—eighth out of the 37 states tracked. Among the secrets of highly successful states: better testing and access to treatment, and more resources and services for people living with the virus. Interested in advocating for equal access to health care for people with HIV across America? Go to poz.com/roadtowashington.
WARNING: ISENTRESS RASH The FDA has released new, critical information about the integrase inhibitor Isentress (raltegravir). In a nutshell: If you develop a rash after you start taking this HIV med, call your health care provider immediately. Search the Isentress drug page on poz.com for details.
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Congresswoman Barbara Lee fearlessly leads the charge on Capitol Hill for people with HIV. Tens of millions of lives—including ours—depend on her ability to convince lawmakers to support the ﬁght against AIDS. Having made an effective case for presidential leadership on the issue of ending AIDS, she now needs all the support she can get to rally the rest of Congress to champion the cause.
BY REGAN HOFMANN
AM WALKING, NO, RUNNING BESIDE U.S. Congresswoman Barbara Lee the morning after World AIDS Day—a day made historic this year in part because of her bold leadership on HIV/AIDS. She is easily out-striding me along the super-shined marble floors of the Rayburn House Office Building in Washington, DC. Next time we meet, I’ll know to wear sneakers. Lee moves like a hurricane making land. Before one of our interviews begins, she bursts into the room surrounded by hovering staff, assesses the set-up, schedule and options and decides to move the interview and photo shoot to another location to eliminate wasted time and unnecessary steps between her appointments. We’re all running after her down the hall almost before we know what’s happened. Lee’s urgency comes not from nervous energy, but rather from a laser-focused determination to help people in dire need. Whether fighting for impoverished, disenfranchised, jobless, homeless, undereducated Americans or people living with HIV/AIDS at home and around the world, Lee knows that the sand slides through the hourglass faster for some than for others. Her desire to make the world a safer, better place for those hanging on the edge of survival drives her nonstop race against time. Congresswoman The Democratic congresswoman repreBarbara Lee senting California’s Ninth District has a in the rotunda of the U.S. strong record of independent voting and proCapitol in gressive politics (she is the former cochair of December 2011
the Progressive Caucus). And she knows how to seize the right moment to apply pressure to effect social change—especially on issues others would rather not face. Our political system is based on the idea that the American people elect representatives to lobby for our needs in Washington. But it’s not always easy for those we send to our nation’s capital to remain independent and truly serve the needs of their constituents versus make decisions and cast votes in ways that serve the agendas of their most powerful and wealthiest donors. A social worker by training, Lee sees her role simply; she is a warrior in Washington for one main reason: to serve and defend the most underserved and vulnerable people in the world. Case in point: her dedication to the domestic and global HIV/AIDS community. Several weeks before President Barack Obama’s landmark speech on HIV/AIDS on December 1, Lee penned a letter to the president asking him to consider three key initiatives to help people with HIV. They were: (1) to announce a new goal of treating 6 million people with HIV by 2013 through the President’s Emergency Plan for AIDS Relief (PEPFAR)—a move that would bring the global total to about 8 million on treatment by 2013 and would require no additional funds short term, (2) to expand HIV prevention, care and treatment activities in U.S. jurisdictions that experience rising HIV incidence and growing wait lists for access to the AIDS Drug Assistance Program (ADAP), in advance of the Affordable Care Act provisions starting in 2014 and (3) to
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Michel Kazatchkine, head of the Global Fund to Fight AIDS, Tuberculosis and Malaria; executive directors of organizations that support the fight against AIDS; activists; advocates; people living with HIV; other members of Congress; and members of the National Security Council and the administration. Plus, a live audience tuned in on the Web. It was a watershed moment in the history of AIDS, and Lee made the most of it speaking candidly about some of the stickiest subjects associated with HIV. “African Americans make up 14 percent of the U.S. population,” she noted. “But they represent 44 percent of all new HIV infections in our country. This is unacceptable.” (One of Lee’s central objectives is putting the plight of Americans of color with HIV into the context of the global pandemic. Early in her years of activism, she invited Bono to Oakland to see how similar disinfranchised African Americans were to people in need in other nations. When he picked up that mantle, the NAACP noticed and gave him its prestigious Image award. “A very unusual thing for a white Irishman,” she laughed.) On the panel, Lee highlighted the need to reduce stigma, and she suggested that political leaders come together and get publicly tested for HIV to show people it’s OK to do so. She also called out the long lines for HIV medications in states like California and Florida (and others) as being immoral and unethical. “We have to find a way to provide these medications very quickly,” she said. In light of her point, President Clinton raised the issue of securing generic pricing for AIDS medications in the United States for those who could not afford the drugs otherwise. He suggested the government negotiate with the pharmaceutical drug companies to lower prices in the United States for the next two years, until the Affordable Care Act kicks in fully and
Lee speaks on Capitol Hill in July 2011; a copy of the letter she sent to President Obama
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order a review of federal and state laws, policies, regulations and judicial proceedings involving criminal cases against people living with HIV/AIDS. At a time when Obama was preparing to launch his next presidential campaign in the midst of low approval ratings and a struggling economy, inviting him to stand so publicly on the issue of HIV was a big ask. But Lee knew he’s long been supportive of people with the virus and that he personally wants the end of AIDS to be a legacy for his administration. So she did the asking. Her face looked illuminated from within as she sat several feet from the president listening as he acknowledged each of her requests in his speech. It was understandable. Not everyone gets to claim they directly helped save the lives of 2 million people (currently, about 4 million get HIV care via PEPFAR; through a strategic reallocation of funds within the proposed FY2012 budget, an additional 2 million would be connected to treatment by 2013). Lee’s career tally is far higher, but 2 million lives spared is certainly nothing to sneeze at. After Obama’s speech, the stage and podium were rearranged for a panel discussion led by CNN’s Sanjay Gupta focused on how the world can begin to end AIDS. Participants included Lee, Bono, Muhtar Kent (chairman and CEO of Coca-Cola), Alicia Keys, Florence Ngobeni-Allen (an HIV educator and woman living with HIV), Patricia Nkansah-Asamoah, MD, (an HIV doctor in Ghana), Senator Marco Rubio (R–Fla.) and Kay Warren (founder of the HIV/AIDS Initiative at Saddleback Church). Joining via satellite were President George W. Bush, Tanzania’s President Jakaya Kikwete, President Clinton and Sir Elton John. The event was jointly hosted by ONE and (RED), Bono’s organizations, and in the audience were global AIDS leaders, including Anthony Fauci, MD, of the National Institutes of Health; Ambassador Eric Goosby of PEPFAR;
there would be different mechanisms for paying for treatment for the nearly 850,000 Americans (and counting) who are not taking the pills—pills that double, by the way, as prevention because when an HIV-positive person adheres to an effective treatment regimen, the risk of transmitting the virus can be reduced by 96 percent. Clinton asked Lee directly if she would command an initiative to explore generic pricing for HIV medications in America. He knows she is the woman to do it; they worked closely together when he was in the Oval Office. “You know we’re going to follow-up and find a way to do this,” she said. Thanking Lee for her leadership, Clinton said, “You were one of the very first people who understood what was at stake.” Lee still does. She said, “I am humbled and excited that we’re here today. I hope everyone sees how Congress and political leaders have put aside their partisanship and different points of view to say we’re going to work to ensure we have an ends to AIDS. We’re at a critical moment when we need to recommit. We’re winning this war, but we still have a long way to go.” Indeed, we find ourselves at a flummoxing crossroads. At the exact moment global health experts agree we can start
world definitely has the money to end AIDS.” As we go to press, it appears that Congress will approve a 4 percent increase for global relief funding—much of which will help people with HIV/AIDS. And the word in the beltway is that Lee’s ability to get 103 members of Congress to sign a letter in support of foreign aid played a pivotal role in the backroom appropriations negotiations that may have protected monies in the Fiscal Year 2012 Department of State, Foreign Operations, and Related Programs Appropriations bill—a bill that funds PEPFAR and U.S. contributions to the Global Fund.
ew people have fought as long, as hard and as effectively for people with HIV as Congresswoman Barbara Lee. There has not been a single piece of HIV-related legislation taken to the floor of the U.S. House of Representatives that has not carried her signature. In fact, she coauthored or cosponsored many of the bills, including the three bills currently garnering attention in the House and in the media. The first is The Justice for the Unprotected against Sexually Transmitted Infections among the Confined and Exposed, or JUSTICE Act, which
Not everyone gets to claim they helped save 2 million lives. turning the tide on AIDS, even stopping it altogether in the next decade or so with the right strategic investments, the global economic landscape looks gloomy. Days before the president’s speech, the leadership of the Global Fund announced that due to a lack of funding, it could not fulfill its next round (Round 11) of grants—grants that would have covered 25 percent of the worldwide funding for HIV/AIDS. That means the pressure to solve the world’s AIDS problem falls, as it has done time and time again, almost entirely back into America’s lap. We can’t begin to end AIDS unless we get lots more people onto treatment. And we can’t do that unless we have continued support from Congress. But while some might be daunted by the combination of congressional gridlock, economic strife, diminished federal budgets, lack of jobs, an impending election (which means, usually, caution on tackling issues that can prove counterproductive to re-election) and “Fortress America” thinking, Lee remains unswayable in her devotion to clear HIV off the planet— while keeping those living with the virus on it. She understands well the confluence of scientific insight and momentum that has led everyone ranging from global AIDS experts to the mass media to America’s commander in chief to publicly state that we have in our possession the tools to start to end AIDS. And she’s bringing the hammer. “Make no mistake,” Lee says. “We have the money. The
would allow prisons to provide condoms to incarcerated people and which calls for automatic reinstatement or reenrollment in Medicaid for people who test positive for HIV in prison before reentering communities. The second is The Repeal HIV Discrimination Act; it’s designed to eliminate discrimination in the law for those who have tested positive for HIV. And the third is The Real Education for Healthy Youth Act (REAL 2.0). It would expand comprehensive sex education while ensuring that federal funds are spent on effective, age-appropriate, medically accurate programs. Together, these three bills would attack major drivers of the domestic HIV epidemic: lack of access to treatment, particularly among disenfranchised African-American men; the wrongful incarceration of people with HIV, which only serves to heighten the stigma and discrimination around HIV that frightens people away from testing and knowing their status; and, finally, a lack of lifesaving information about sexual health among youth. Understanding the huge role the clergy can play in the fight against HIV/AIDS, especially in African-American communities, Lee has cosponsored a bill with Congressman Charles Rangel (D–N.Y.) called the National Black Clergy for the Elimination of HIV/AIDS Act. It is currently in the Senate. If that seems like a lot of legislation, it is. But Lee knows it takes laws to truly protect people, and she’s good at getting legislative deals done so that people’s health and safety are
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legally bound, not left to the whims of political maneuvering. Lee cut her AIDS activism teeth with ACT UP in the Bay Area. In 1988, John Iverson and Maudelle Shirek (the “mother of progressive politics”) insisted that Lee, then on the city council, attend an ACT UP rally. “It was that moment I knew I had to do something about AIDS,” she said. “So when I was elected into the California legislature in 1990, I started working on needle exchange and whatever else I could. The city of Oakland tried to ensure we had an opt-out of the federal ban on needle exchange. When I came to Congress in ’98, it was a logical next step to continue the work in DC, but I wasn’t sure on what front because [at the time] no one in Washington was dealing with it.” Lee took a close look at the numbers of AIDS cases in Alameda County, California, and became part of a group pressuring Donna Shalala (who was then secretary of the Department of Health and Human Services) to declare a public health crisis regarding AIDS in America. “She couldn’t do it—she wouldn’t do it,” Lee recalls. “So I decided I needed to really step up.” One of her first moves was to craft, with Congressman Jim Leach (R–Iowa), the Global AIDS and Tuberculosis Relief Act of 2000. The groundbreaking legislation served as the framework for the Global Fund. The law established a $15 billion global AIDS initiative—at the time it was the biggest financial
HIV and the Law. She fights homophobia and has long worked to improve relations with our Caribbean neighbors and was instrumental in ending the ineffective embargo against Cuba. In 2005, she was nominated for a Nobel Peace Prize along with a group of women from 150 countries who were part of “1,000 Women for Peace”—an international coalition. And, when not doing all that, she’s been a leader in a bipartisan congressional effort to end the genocide in Darfur, Sudan. Lee’s work is distinguished not only by the sheer volume and relentless nature of it, but especially by her willingness to address topics some of her fellow members of Congress would rather not hear about, let alone be asked to take a public position on. Topics like syringes, condoms, the health of prisoners, teen sexuality, poverty and racism. While other members are all too happy to stick their heads in the sand about how these issues impact their constituents, Lee takes direct action to change policy to protect those who would otherwise be taken advantage of, simply because they’re vulnerable. It is her duty, she believes, to speak on behalf of those whose voices are muted. And she listens well to what people need so that when she does speak, it is with the authority that comes from an insider’s knowledge of an issue. She has long worked closely, and directly, with those living with and affected by HIV.
“We have to keep ﬁghting for what people need.” pledge by any nation in the world to fight a single disease. President Clinton signed it into law. Shortly afterward, Congresswoman Maxine Waters (D– Calif.), then chair of the Congressional Black Caucus, and Lee decided to call African-American AIDS activists to Washington. That meeting led to the formation of the Minority AIDS Initiative. In 2005, she wrote a piece of legislation that protected orphans and vulnerable children affected by HIV/AIDS. And, in 2008, she coauthored legislation that renewed PEPFAR— the global AIDS program—successfully lobbying to increase the United States’ commitment to $48 billion through 2013 to the fight against HIV/AIDS, tuberculosis and malaria. She also coauthored the Protection Against Transmission of HIV for Women and Youth Act (PATHWAY) to reduce women and girls’ vulnerability to the virus. And she advocated for the development of the National HIV/AIDS Strategy and secured House passage of a resolution supporting the goals and ideals of National Black HIV/AIDS Awareness Day. The Congresswoman helped lift the ban on people with HIV traveling to the United States (a change that allows the International AIDS Conference to be held in DC this coming summer), and she was recently appointed as the only U.S. representative to the United Nations’ Global Commission on
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large part of whether or not we’ll succeed in ending the pandemic lies in continued congressional leadership. With her vast experience, personal engagement and fierce determination to finish what she started, Lee will likely be at the helm of this effort. On September 15, 2011, Lee, with cochairs Congressman Trent Franks (R–Ariz.) and Congressman Jim McDermott (D–Wash.), launched the Congressional HIV/AIDS Caucus (it was formerly the Congressional Task Force on International HIV/AIDS) to examine methods by which the United States can maintain global leadership in response to the epidemic. The 68-member (as we go to press) caucus focuses on implementing the U.S. National HIV/AIDS Strategy, the financing for bilateral and multilateral HIV/AIDS programs, the state of HIV/AIDS research, the role of faith-based organizations in stopping AIDS, and the 2012 International AIDS Conference coming to DC this summer. Lee says political action is particularly key now. She encourages people living with HIV/AIDS to plug into the presidential campaign and get engaged. She says HIV/AIDS must become a key issue for the presidential race. And, she’d love us to support the congressional caucus. “Call your members and ask them to join,” she says. “As a member of Congress, my job is motivational. I need to
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inspire people to come back into the fold to believe they can be empowered. Change is hard, but it’s possible.” She tells a story of meeting with several hundred hardcore, progressive Democrats. Once supporters, they had become disenchanted. “They threw every criticism they could my way. I spent two hours answering all their questions, and in the end they came around. I walked them through everything we had done and laid out all that is left to do and explained if we don’t [keep going forward together], we’ll leave it to the right-wingers. And that’s not good.” When I ask her about the despondency of many Americans and the resultant Occupy Wall Street movement, she says, “We need to reignite the American dream. Congress needs to go beyond the call of duty this next year. And women and African Americans and people of color have to let other people who are struggling now in America know the struggles they’ve been through. I think about all the people who sacrificed and died as a result of fighting for what they believed in. If they had given up, I couldn’t be here. And you’re going to tell me you’re going to give up? No, we have to keep fighting for what people need.”
n World AIDS Day, I asked Lee how it felt to work so hard, for so long, on such a tough, unpopular issue and then to bear witness to President Obama as he recommitted publicly to the fight against AIDS. She answered, “I know this president. And we worked very closely with his staff. They really got it. It was a joint effort. But it was really remarkable to hear him speak and look at our letter and say, ‘Yes,’ ‘Yes,’ ‘Yes.’ It made me say, ‘Yes Mr. President! Thank you very much.’” But soon, her ebullient expression shifted to a look of firm resolve. Because she knows all too well that it’s one thing to say we have the ability to start ending AIDS—and another thing entirely to secure the political and financial capital to make the president’s resolve to end the pandemic a reality. In
many ways, the president’s public stance in support of HIV/AIDS has only called for a greater push in her own work. Now, she faces the daunting task of getting several hundred of her colleagues to join her in voting for legislation and budgets that will stop people from dying of AIDS and prevent the spread of the virus. And she will try to do so in a political environment that’s so toxic that something as simple as extending the payroll tax cuts is twisted into a logjamming moment by the Republicans. So rather than stand around basking in the afterglow of her good work, Lee pulls on her coat and rushes out the door, hard-charging the next steps. She scurries back to the Rayburn building for a reception hosted by the Congressional HIV/AIDS Caucus. Later, after casting a round of votes, she hosts a reception in the Senate for Bono and Keys where she uses her floor time to impress upon the senators in attendance the need to continue to support the bipartisan war against the deadly virus. Before we part, she shares her crazy upcoming schedule, noting that the next Congressional session will likely eat into her well deserved vacation time at home. I ask if things are always as harried and demanding. “Yes,” she says sounding slightly resigned, but grinning. Her smile seems to say, It is the holiday season—but injustices need to be addressed, homeless people need housing, inmates need condoms, injection drug users need clean syringes, 28 million people around the world with HIV—including nearly 850,000 Americans—need antiretroviral drugs, impoverished people need food and jobs and hope, and with such a list of problems and so many suffering, there is simply no time to waste. Luckily for us and everyone else she fights for, it appears that Congresswoman Barbara Lee’s not wasting a nanosecond of anyone’s precious time. ■
Lee talks to reporters after a December 2010 press conference; a copy of the proposed bill known as The Repeal HIV Discrimination Act
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As a black queer man, Michael Tikili often feels invisible.
Forgotten Sons Rates of HIV among young black men who have sex with men continue to skyrocket, leaving people wringing their hands and asking, “What are these men doing?” But the problem is not so much what young black men are doing but rather what is being—and what has been— done to them. And what hasn’t been done for them.
BY TOMIKA ANDERSON
ICHAEL TIKILI REMEMBERS VIVIDLY THE NIGHT he lost his home and his father. After an evening out with friends two years ago, Tikili, then 23, was confronted by his Pentecostal minister dad in the hallway of their Brooklyn home. Tikili was chastised for missing two Sundays at church, for being generally disrespectful—and for being caught in bed with another man. But before Tikili’s parents could march him upstairs to pack his belongings and leave, he decided to give the man who’d raised him and his four siblings a piece of his mind. “I told him that the reason most of my life had been shit was because of his so-called church,” says Tikili, whose family hails from Nigeria but who grew up here. “I told him all he did was preach hate. I told him I felt my entire existence was an abomination, and that was why I had tried to commit suicide [as a child].” And then Tikili lowered the boom: Not only was he queer—he was also HIV positive. “I think that was the first time I saw my dad have any sort of emotional reaction,” recalls the MBA graduate, now 25, who was diagnosed the summer before grad school. “He just sat there, stunned and silent. Then it was like, ‘Alright, well, thanks for the conversation. See you later.’”
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jvar Payne, a 24-year-old senior at Southern University and A&M College in Baton Rouge, tells a similarly painful tale. Originally from a small town in Illinois, the soft-spoken Payne says he chose a school on the other side of the country to escape the strict household run by his father, who is in the Army. “He was really hard on us,” says the bespectacled, babyfaced Payne, referring to the strict curfews his dad imposed on him and his four brothers—even on prom night—and the white-glove-type dust inspections they’d be subjected to after cleaning the house every Saturday. “It was pretty miserable,” he says. “I grew up feeling like no one really loved me.” Payne says he tried to win his father’s affections by enrolling in activities he thought he’d approve of. “I was always trying to prove myself,” he recalls, “becoming drill team commander in ROTC [the Reserve Officers’ Training Corps] and the choir director at church—anything so that somebody would be proud of me.” Fear of further disappointing his dad was one reason Payne opted not to tell him he was gay. Besides, with so many other pressures—including financial problems—on his family, “it just never came up,” he says. “Telling him [I was gay] would have just been the icing on the cake.” To block out the disappointment of family life, Payne began immersing himself in marijuana and booze. During his first semester at Southern he began taking weekend road trips with his new “gay family”—a group of college friends—to party in nearby New Orleans. “That’s when I really started drinking,” the business management major says. He became such a “master at mixing drinks” that people would ask him to bartend at parties. Payne basked in all the newfound attention. “I never thought I was cute [before then],” he says shyly. But once away at school, he switched up his wardrobe and discovered his own style. And it worked, he says: “People started noticing me.” Payne admits he would have unprotected sex with other guys simply because they told him he was cute. “I wasn’t worried about asking, ‘Do you have any STDs,’ Gjvar Payne [sexually transmitted diseases] or anything. found a gay family We’d be drinking, and you know, that all played away from a part in [my contracting HIV].” home.
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ikili and Payne are just two of hundreds of thousands of faces behind a three-alarm-fire: the HIV crisis ripping through the black community. In August 2011, the U.S. Centers for Disease Control and Prevention (CDC) was the official bearer of bad tidings. It released a report that showed an upward tick consistent with what researchers have seen during the 30 years since AIDS emerged: The rates of infection among young black men who have sex with men (MSM) are skyrocketing. The CDC estimates that each year, about 56,300 people contract HIV in the United States. African Americans, regardless of gender or sexual preference, comprise 44 percent of these cases, and MSM comprise a whopping 73 percent of the total cases among black men. What’s more, rates of infection increased 48 percent between 2006 and 2009 among black MSM between ages 13 to 29. (Based on the CDC’s projections, young MSM in general were the only group to experience an uptick in infection rates during this time.) But these black men don’t get the sympathy afforded to some heterosexual black women who’ve contracted HIV from male partners (the “down low” myth, discredited as the main driver of HIV among black women, continues to stigmatize black MSM). In fact, many activists and academics say, too few people care about what happens to black MSM, in part because of judgments made about their sexuality. “Without a doubt homophobia is contributing to the problem of high rates of HIV among black MSM,” says Linda Villarosa, who is the journalism program director at the City College of New York. A former New York Times reporter, Villarosa is contributing to a documentary on HIV/AIDS in the black community, to be broadcast on PBS this year. “Where there is judgment and sexual shaming, there are high rates of HIV,” she says. “Where there is fatalism, fear and secrecy, there are high rates of HIV. In a conversation about high rates of HIV among black MSM, I once heard a young man say, ‘Nobody cares about us, including us.’ That’s not entirely true, but it is sad.” Kai Wright—a black gay activist and the editor of the political e-zine Colorlines—says a prevailing sense of hopelessness puts young black gay men at risk for HIV. “Young, black gay and bisexual men are among the most economically, emotionally and culturally beat-up groups in the United States,” he wrote in an essay published last August by Colorlines and the Black AIDS Institute. “They are uniquely at risk for a long list of social ills— hate crimes, homelessness, honestly just about any of the things researchers look at when measuring health risks among young people. So of course they are uniquely at risk for HIV, too.” Kenyon Farrow, former executive director of Queers for Economic Justice, agrees. He says getting HIV is generally just one symptom of much larger life issues. One common scenario, he says, is that kids get kicked out of the house once their families find out they’re gay. As a result, they’re cut off from traditional support networks—and once they’re homeless, they’re subjected to a range of situations where they’re more likely to contract HIV. “If you’re black and you get ostracized from the black community,” Farrow says, “you’re screwed.”
Although Tikili’s father would later apologize for “all the things he’d done wrong” in his life—including not believing him when Tikili revealed that a male friend of the family had sexually molested him at the age of 10—the damage that had been done to their relationship over the years was irreparable. To this day Tikili’s voice cracks when he speaks of the day he divorced his father in his heart. “What kind of shitty parenting is that?” he exclaims. “When you finally accept that I was raped, the only question you have for me is, ‘Did it affect your sexuality’? What about my well-being, my mental stability, my human interactions— my effing life, for crying out loud?” (It’s a common misperception that childhood sexual trauma makes a person gay.)
Farrow adds that the church—which has been the backbone of the black community since Africans were brought to this country in chains—often exacerbates the problem. “[In church] gay people are taught that they’re going to hell,” he explains. “As a result, someone who’s gay may have serious mental health issues to work out. And those issues can impact their relationships. Someone who doesn’t feel good about themselves may not use condoms all the time or learn to negotiate their own body and what safety means to them.” Joseph Richardson, PhD, assistant professor of AfricanAmerican studies at the University of Maryland at College Park and an expert on at-risk black men, sees this lack of selflove reflected in the carriage and demeanor of many of the black teens and young men he encounters—be they gay, straight or queer. These are men already shackled by the chains of poverty, fatherlessness, mass incarceration and a lack of educational opportunities. “I am sure there is a significant population of alienated black men who may ‘put in work’ [slang for street hustling] by trading sex for drugs or simply engaging in [sex with men] for money to survive,” says Richardson, who is also a MacArthur Foundation grant recipient. “I read an article on black transsexuals recently. It examined how many of them have to engage in sex work to support themselves because the stigma of being transgender hinders them from integrating into society,” he says. “At least 50 percent have attempted suicide at some point in their lives, and at least 20 percent are HIV positive. [Theirs] are the stories that are not being discussed enough in the black community.” Tikili took advantage of free therapy when he attended Duke University; nonetheless, he says that as a black queer man he often walks around feeling invisible—like a secondclass citizen. “I was on this panel a few weeks ago, and we were talking about the lack of role models in the queer world,” says Tikili, who is now a community organizer with Health GAP (the Health Global Access Project). “I was like, There aren’t that many black queer or gay role models, you know? So we have to create our own communities in order to not feel isolated and alone. [Even] the term ‘gay’ is a mainstream, white thing.” Eliminating labels like “gay,” “transgender” or “MSM” would help put an end to the stigmatizing, says Cleo Manago, founder of the national nonprofit AmASSI, the AfricanAmerican Advocacy, Support-Services and Survival Institute. “Can we just refer to folks as what they really are, which is human?” he asks. “We’re always so busy trying to categorize people, we forget [their humanity].” Manago helped organize an often heated panel discussion about black manhood this past July—a month before the CDC’s latest bombshell. He recorded the event and turned it into a 37-minute educational film. About 200 black people gathered for the historic “I Am a Man: Black Manhood & Sexual Diversity in the Black Community” summit, held at the Reverend Al Sharpton’s National Action Network headquarters in Harlem. Civil rights leader Sharpton, Manago and others sounded off on a range of topics influencing the community— from Uganda’s aggressive anti-homosexuality campaign to
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same-sex marriage to hip-hop’s hypermasculine message— offering lengthy opinions on just about everything but the hulking elephant in the room: HIV. The omission was no accident. “What we attempted to do at this forum,” Manago says, “was go beyond the typical HIV discussion, go deeper into some of the prejudices, the brainwashing, the attacks on black men and the way black male voices and attitudes in our community are compromised.” When events are billed as HIV related, he says, people don’t show up. Farrow makes a similar point. “Most media coverage of AIDS here—as opposed to coverage of HIV/AIDS in Africa— is stigmatizing,” he says. As examples, he mentions stories about black men on the down low and criminal prosecutions of people accused of not telling a partner their HIV status. “No wonder people avoid public forums discussing HIV,” Farrow says, adding that such forums draw mostly people already living with the virus or people working in the field.
he question remains: Does the solution ultimately lie in more community-based initiatives—or further government intervention? The CDC insists it’s the former. Researchers there say the federal agency is already doing its part to extinguish the flames of the crisis by expanding funds for disproportionately affected populations. In addition to launching the “Act Against AIDS: Testing Makes Us Stronger” campaign—the latest phase of an ongoing public awareness and education campaign to encourage testing among black men who have sex with men—the CDC recently unveiled a new five-year, $55 million funding opportunity for community-based organizations (CBOs) to expand HIV prevention services for young gay and bisexual men of color and their partners. It’s all part of the National HIV/AIDS Strategy unveiled by the Obama Administration in 2010, which aims to cut new HIV cases by 25 percent by 2015, reduce overall health disparities and get more HIV-positive people on treatment and into care. “We are making sure we direct our resources—in these days of limited resources—toward those interventions that will prevent the greatest number of new infections,” says Donna McCree, PhD, MPH associate director for health equity at the CDC’s Division of HIV/AIDS Prevention. “We are supporting only the best combination of interventions—making sure that they’re targeted to the right populations and that they’re at a scale big enough where we can make a significant difference.” Manago, founder of the nonprofit AmASSI, takes issue with the CDC’s approach, which he says is increasingly focused on HIV testing. “The CDC is no longer putting most of its money into prevention, instead primarily focusing on testing,” he says. “How the heck does testing somebody prevent HIV?” Indeed, as has been shown again and again, black men and women consistently have the same or fewer sexual partners and risky behaviors than whites. But the high prevalence of HIV in African-American communities means that each sexual encounter carries a higher risk than for other groups. Moreover, Manago says, the CDC approach doesn’t help
get young black MSM into care if they do test positive. He believes the reason the agency stopped placing a heavy emphasis on behavioral prevention is that the approach has failed to reach targeted populations over the years—largely because it did not address HIV among black men in culturally relevant ways. “None of their models were originally tested on black men,” he explains. “They have no models that are organic or [respectful] of black men’s lives and communities. If you test models that are affirming and motivating to black men—and considerate of their lives and culture and inter-dimensionality— you will have more success,” Manago says. Other experts add that the same can be said of HIV medicine itself—meaning, for instance, that for years researchers ignored the need to recruit black participants for drug trials. Or that insensitive research terms have not been adjusted. “The term ‘MSM’ is one used by health providers, not our community,” Manago continues. “If you keep on calling everything [that targets us] ‘MSM’ or ‘gay’ [it won’t work.] The whole reason the term MSM was created in the first place was to categorize diverse men who did not identify as gay. But they keep on giving that MSM money to gay-identified organizations, which defeats the purpose.” Ron Stall, PhD, chair of the University of Pittsburgh’s Department of Behavioral and Community Health Science, says the problem goes far beyond the CDC. “H I V prevent ion programs are terribly underfunded for gay men of all races,” he says. “Over 60 percent of all new HIV cases in our country now occur among gay men. Prevention can and does keep gay men from becoming infected with HIV, and this saves the health care system a lot of money. Given this simple fact it would be great if the White House and Congress did more to invest in HIV prevention among gay men, which would yield especially impressive dividends among black gay men.” Stall wants to see the government put its money where its mouth is—and for the black and gay communities to step up. He lists some essentials: “Provision of better access to medical care for black gay men [is critical],” he says. “Also the creation of social settings where black gay men feel welcome and valued as human beings, not only in the gay community but in their home communities.” For this to happen, says University of Maryland professor Richardson, the federal government must be willing to work with grassroots community organizations to create more spaces for youths who are too often shunned or abandoned by their families, churches and communities for being gay. “We need to make more of an effort to serve as and support ‘social parents,’” he says. “Some of the best parents for our youth are not biological. We need to invest in the unusual
suspects—those who can do the most work with black male youths—because they play valuable roles in their lives,” Richardson says. “I gained some of the most insightful lessons about manhood from my coaches, uncles, teachers and older men in my community. When you talk truthfully to a young man about the insecurities you have personally experienced while evolving into a man—whether it’s school, sports, sex, whatever—they identify with you. Your presence also has to be consistent.” Richardson—who helped conduct a study of juvenile incarceration in the Washington, DC/Baltimore metropolitan area before funding ran out—says the government needs to create social welfare policies to give young black men in general a fighting chance. That includes more effectively tackling black unemployment, winning the war on drugs and not being so quick to send a black man to prison. “We must change our mass incarceration policies, which remove so many black men from families and communities,” he says. “Mass incarceration is draining our community of social capital, which has a snowball effect on everything. Parents have to become better parents, but when men are not working,
HIV is just one symptom of larger issues—like homophobia, unemployment, incarceration— affecting young black men. the black family will ultimately remain broken.” The damage and disenfranchisement emerged historically, Richardson says. “The disruption of the black family occurred around the same time as de-industrialization, when black men could no longer support a family as unskilled or semiskilled workers. Now one out of three black men can expect to be incarcerated, which basically excludes us from the labor market, student loans, voting rights and public housing.” In short, Richardson says, the United States must be willing to take responsibility for two centuries of systemic racism and oppression that have stripped black people of the will to properly care for themselves—or for each other—emotionally, psychologically and physically. “We have to make it more culturally acceptable for black men to see a doctor,” he adds. “One reason black men are so afraid of hearing bad news [from the doctor] is that we already have enough to deal with. This is just one more thing to add to our plate—now we have to learn we’re not healthy. As men we have to begin to encourage each other to stay on top of our health, not in a nagging way, but we need to be our brother’s keeper.” And that’s true whether you’re straight or gay, positive or negative. ■
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BY LAUREN TUCK
Hey, Mr. DJ
James Perigny, also known as DJ Jimmy P, began his disc jockey career in the late ’80s, playing house music at some of New York City’s hippest dance clubs such as The Tunnel, The Eagle and The Break. At that same time, HIV was decimating the gay community. The music died down, the clubs emptied out, and Perigny headed to Southern Florida–where he shifted his focus to HIV/AIDS and LGBT fund-raising. In the Sunshine State, Perigny became aware of the lack of HIV services for Latinos and other minorities. In 2004, he and his then-partner Fulgencio Aponte cofounded Red Hispana Florida (RHF), which offers HIV testing, counseling, education and support to the state’s most disenfranchised communities. At RHF, Perigny created and now runs WHIV radio, an Internet radio station that also educates about the virus. In between streaming his favorite modern hits, Perigny interviews doctors, social workers and HIV service providers. Listen up to what he has to say. What three adjectives best describe you? Passionate, goal-driven, respectful. Being HIV negative yourself, what drives you to do what you do? The passing of two long-term Latino partners and the insane amount of paperwork it takes to help someone with HIV. What is your greatest regret? Letting Fulgencio Aponte, my partner of nine years, visit Venezuela. He could not return home to Fort Lauderdale because of the U.S. HIV travel ban. [The ban was lifted in 2010.] He died from AIDS-related cancer due to lack of treatment and medicine in Venezuela. If you could change one thing about helping others living with HIV, what would it be? The availability of funding to eliminate ADAP [AIDS Drug Assistance Programs] wait lists. What is the best advice you ever received? Do not listen to naysayers, and do what is in your heart.
If you had to evacuate your house immediately, what would you grab on the way out? My dog and my DJ equipment. For more information, visit whivradio.com.
What person in the HIV/AIDS community do you most admire? I admire Nelson Vergel [a health advocate and wellness author] because he is an amazing source of information and help.
SURVEY What Would You Do to End AIDS?
2011 was a pivotal year for HIV/AIDS. Everyone from President Obama to global health experts to the media started talking about the end of AIDS. It was shown that treatment works as prevention and that our generation has the tools to end the epidemic. But to stop the spread of HIV, we need to leverage our collective power. POZ wants to know what you’d be willing to do to help end AIDS.
How willing are you to contact a local, state or federal representative regarding HIV/AIDS issues or policies?
❑ Very willing ❑ Somewhat willing ❑ I wouldn’t feel comfortable contacting a political representative 2
If you are willing, by which methods would you reach out to your legislators?
Do you feel that you have the power to personally impact whether or not the world starts to end AIDS?
What year were you born? ________________
What is your gender?
❑ Yes, anonymously ❑ Yes, using my real name and email address ❑ No
What is your sexual orientation?
Would you visit your state capital to speak with representatives about the need for new policies and funding for HIV/AIDS?
What is your ethnicity? (Check all that apply.)
Would you sign up online to join a global movement to end AIDS?
Would you speak with U.S. lawmakers in Washington, DC, about the need for new policies and funding for HIV/AIDS?
❑ Yes 9
Which of these organizations do you believe speaks for the community on a national platform? (Check all that apply.)
❑ Yes 8
If you would join a demonstration or protest, would you be willing to get arrested?
❑ Yes 6
Do you think the HIV/AIDS community has been advocating loudly enough lately for what we need?
❑ AIDS United ❑ The Foundation for AIDS Research (amfAR) ❑ The National Association of People With AIDS ❑ The National Minority AIDS Council ❑ None of the above
Would you be willing to participate in an HIV/AIDS demonstration or protest?
❑ Yes ❑ No ❑ I don’t know
❑ By email, anonymously ❑ By email, with my real name/email address ❑ By phone ❑ By email and phone 4
Do you think political representatives listen to their constituents and vote accordingly?
Do you know how to contact your local, state or federal representatives?
❑ Yes 3
Would you be more willing to lobby lawmakers if you had formal training?
❑ Male ❑ Female ❑ Transgender ❑ Other ❑ Straight ❑ Bisexual ❑ ❑ ❑ ❑ ❑ ❑ ❑ ❑
❑ 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 #177, 462 Seventh Avenue, 19th Floor, New York, NY 10018-7424