HIV/AIDS Community Spotlight: People Who Made a Difference in 2010

Senior Editor

Table of Contents

As an action-packed year for the HIV/AIDS community draws to a close, TheBody.com takes stock of 2010 in a new series of articles, "HIV/AIDS Year in Review: Looking Back on 2010 (and Ahead to 2011)." Read the entire series here.

Introduction

Kenyon Farrow
Kenyon Farrow

'Tis the season for "best people of the year" lists. Many of these lists are predictable: They usually include some famous billionaire who gives most of his fortune away to save the dolphins, an uber popular actress who collects orphaned children from across the globe, or some prepubescent pop star who has sold millions of downloads on iTunes.

We promise that our list isn't as corny.

TheBody.com took a thorough look at the amazing accomplishments in the HIV/AIDS community in 2010. But instead of solely focusing our efforts on medical breakthroughs, we decided to also pay homage to the people who do transformative work outside of the biomedical box.

After all, while we understand how scientific advancements help us fight the global pandemic, we also realize that they don't sufficiently address the societal and systemic underpinnings that make people more vulnerable to contracting HIV. Realistically, how can popping Truvada (tenofovir/FTC) every day protect a gay man or transgender woman in certain countries in Africa, where the government criminalizes their very existence? Or help protect women who live in a city, state or country where access to reproductive health is controlled by their intimate partner, family or government? Or aid a sex worker who is forced to register as a sex offender, which prevents her from getting a "legit" job or getting access to public assistance?

The HIV/AIDS advocates on our list center their work in the belief that policy, oppressive systems and power (or the lack thereof) directly impact the most marginalized people around the world. They use their complex understandings of social justice to create innovative strategies that address the barriers and gaps in prevention, treatment, care and human rights. (In other words, while we appreciate their efforts, Bono, Lady Gaga and Alicia Keys are not on this list.)

Before we start our list, one important note: It is virtually impossible to pay a proper tribute to all of the incredible people who work tirelessly, with little to no recognition, to fight for justice, equality, treatment access and many other issues that are critical to the lives of people with HIV/AIDS around the world. This brief listing is meant to be a sample, a spotlight shined on a small number of those without whom living with HIV today might be no better than it was 30 years ago.

Here are TheBody.com's five outstanding HIV/AIDS advocates of 2010.

1. Joel Gustave Nana: Fighting AIDS and Homophobia in Africa

Joel Gustave Nana
Joel Gustave Nana

Joel Gustave Nana, a 28-year-old from Cameroon, has risen to international recognition as one of the leading advocates for human rights for lesbian, gay, bisexual and transgender (LGBT) people and people living with HIV in Africa. Recently, he was named the executive chair of African Men for Sexual Health and Rights (AMSHeR), an umbrella organization of 15 different LGBT/HIV organizations across sub-Saharan Africa.

AMSHeR formed in 2008 when a group of HIV advocates from Africa convened at the XVII International AIDS Conference in Mexico City. After many conversations about the issues LGBT Africans were facing, they decided there needed to be a wide effort to decriminalize homosexuality across the continent; gather HIV prevalence and incidence data on African men who have sex with men (MSM); and obtain significant funding for prevention and treatment.

This coalition could not have come together at a more critical time. Earlier this year, the Ugandan government (in a backlash against a 2009 court decision that sided on behalf of a Ugandan lesbian assaulted by police) embarked on a campaign to make gay sex a crime punishable by death. Through pressure from African and human rights activists around the world, the government backed down, but the Democratic Republic of the Congo recently decided to consider similar measures. Then there was the imprisonment of Tiwonge Chimbalanga and Steven Monjeza, a gay couple in Malawi who got married, were sentenced to 14 years in prison, and then later were pardoned.

Such severe homophobia makes it difficult for HIV/AIDS workers to do outreach, not only due to the stigma and fear of being policed because of it, but also because this hostility toward the LGBT community has forced members of the community to go underground, making it difficult to reach them.

Nana is trying to change that. This year alone, under Nana's direction, AMSHeR lobbied heavily against the Ugandan anti-homosexuality bill, and got 13 high-ranking officials from African governments and 39 civil society organizations to endorse a signed letter denouncing the bill; fought against the imprisonment of Chimbalanga and Monjeza; and began collecting a lot of the new research studies on HIV risk and African MSM from other sources and posting it on its own site to make the information more accessible.

While Nana admits that his work is nowhere near done, he is hopeful about the impact it could potentially have. "Should our voices be heard, and the barriers that stop MSM and transgender people from accessing HIV services addressed, we believe it will contribute immensely to curbing the epidemic not just in Africa but around the world," he says.

2. E. Tyler Crone, J.D., M.P.H.: Busting Up the Old Boy's Network in AIDS

E. Tyler Crone, J.D., M.P.H.
E. Tyler Crone, J.D., M.P.H.

Though women are half of the people infected with HIV globally, you wouldn't know that from many of the boardrooms where E. Tyler Crone, J.D., M.P.H., spends her time. Too many of those meetings about HIV policymaking are mostly made up of, and facilitated by, men.

That utterly frustrates Crone. As the coordinator of the ATHENA Network, an international organization for women living with HIV and female leaders, one of Crone's many responsibilities is trying to ensure that female voices are taken into account when HIV policy is being made. But that isn't an easy task, especially given that less than a quarter of the leadership of global AIDS-fighting organizations is female and only 8 percent -- of either gender -- is HIV positive.

This summer, the ATHENA Network and UNIFEM unveiled Transforming the National AIDS Response: Advancing Women's Leadership and Participation, a joint report that provides a clear assessment of the challenges women, particularly HIV-positive women, face in fully participating in HIV-related policymaking and leadership. By analyzing existing data and interviewing women from around the world, they discovered that:

  • Women face significant barriers to their participation ranging from gender norms, lack of access to information and low-self esteem.
  • Participation is treated as a privilege rather than as a right.
  • Sustained investment in women's mobilization, such as backing for HIV-positive female support groups, proves to be extremely successful in diverse regions and settings.

To address these findings, Crone and her colleagues suggested 10 recommendations, which include that policy makers reserve formal places for women to have a seat at the table; that female participation, especially that of the most vulnerable groups of women, is monitored and documented; that leadership training, sustained technical support and mentorship are provided to these female leaders; and that more funding be invested in organizations and initiatives that are led by, or that include, HIV-positive women.

Crone doesn't want to give off the impression that there are not currently women making an impact, because there are many. She just stresses that their voices are not heard enough, their work is underfunded and there is a huge danger in omitting their input. "Positive women are the knowledge brokers, and if they sit at the table at a decision-making forum, they can say how this decision affects communities who are living with or affected with HIV," Crone said. "They can see the blind spots of policies, attest to their shortcomings, and speak on unintended consequences that they live out because the policies don't take into account certain things."

We hope that Bill Gates and the other wealthy power brokers of the global fight against HIV are listening.

3. Deon Haywood: A Woman With a Vision for Justice

Deon Haywood
Deon Haywood

One of the main takeaways from Transforming the National AIDS Response: Advancing Women's Leadership and Participation was that there is amazing work being led by women, yet so many of these women go unrecognized. Deon Haywood is one of those women.

Haywood runs Women With a Vision, Inc., (WWAV) in New Orleans, La. WWAV was co-founded by Haywood's mother and several other black women in 1991 as a social service organization "to promote wellness and disease prevention for women and their families living at or below the poverty line." It was created as a response to the non-existence of HIV prevention resources for women who were the most at risk: poor women, sex workers, women with substance abuse issues and transgender women.

Over the years, WWAV has helped hundreds of women -- mostly women of color -- by doing outreach, distributing condoms and referring women to other services they may need, such as legal assistance and housing. This type of work is crucial, especially given that the U.S. Centers for Disease Control and Prevention (CDC) recently announced that New Orleans and Baton Rouge are among the three cities with the highest HIV rates in the country (only Miami, Fla., ranked higher). Also, in New Orleans, women make up 39 percent of new infections, and 79 percent of new infections are among African Americans.

While WWAV will turn 20 years old next year, it just started garnering national attention in the past few years. This is in part due to the increased organizing and advocacy needs in a post-Hurricane Katrina New Orleans.

In 2006, Haywood found that sex workers in particular were in tremendous need. In order to appear as though New Orleans had its "criminals" under control, the city resurrected a 203-year-old crimes against humanity law that had originally been created to prohibit gay sex. This law now requires women who have ever been arrested for prostitution to register as sex offenders for a maximum of 10 years, to have the words "sex offender" printed on their photo identification cards and endure a number of other penalties.

"There are even some women who had been charged 10 or 20 years ago, who have lost their jobs and homes because they were now registered sex offenders," noted Haywood.

How is this related to HIV? Those charged with and sentenced under this law are disproportionately poor women of color who are at elevated risk of HIV or who are already HIV positive. Economic instability and homelessness affect these women's ability to adhere to their medications or afford their basic needs, and it places them right back into the cycle of sex work and drug use.

To address this unfair law, WWAV created the NO Justice Coalition, which is comprised of several local organizations. The coalition has lobbied city officials and garnered media attention to try to get the law overturned. This December, it had its first success: Lawmakers decided to change the first arrest for prostitution from being prosecuted as a felony to a misdemeanor, which is a lesser charge and does not carry the sex offender status. This win is small and a long time coming. The NO Justice Coalition is currently working to have prostitution cases moved out of criminal court to municipal court. Haywood is hopeful. She told us, "Though it's been a hard road and we've got a long way to go, things are looking up."

4. Paul Denning, M.D.: It's the Economy, Stupid

While it's no surprise that HIV is largely a disease of the poor, the U.S. is just beginning to prove it.

This July, Paul Denning, M.D., a medical epidemiologist at the CDC, co-authored "Communities in Crisis: Is There a Generalized HIV Epidemic in Impoverished Urban Areas of the United States," a study that found that people living below the poverty line (an income of $10,830 per year for a single adult, or $22,050 for a family of four) are five times as likely as the nation's general population to be HIV positive, regardless of their race or ethnicity.

Even more shocking: By analyzing data from 9,000 heterosexual, "low-risk" adults, Denning and his colleagues found that poor urban areas in the U.S., such as Chicago, Ill., Newark, N.J., Washington, D.C., and New Orleans, La., have HIV prevalence rates that are on par with Burundi, Ethiopia, Angola and Haiti.

They also found that other issues associated with poverty -- unemployment, homelessness, low education levels, limited health care access, substance abuse and high rates of incarceration -- were all risk factors for HIV infection.

This study is significant for numerous reasons. First, it redefines how we classify the domestic epidemic. Previously, it was believed that the U.S. suffered from a concentrated epidemic, one that was mostly confined to high-risk people, such as injection drug users, gay men and sex workers. But these findings show that we have a generalized epidemic, which means no one can be left behind in terms of prevention and treatment outreach.

Secondly, Denning's findings show that there is more going on than race when it comes to HIV disparities. While the HIV prevalence rate overall for African Americans is almost eight times that of whites and for Latinos it is almost three times that of whites, when the study looked at HIV rates in the poorest communities, there was no significant difference among the races: HIV prevalence was 2.1 percent among blacks, 2.1 percent among Hispanics and 1.7 percent among whites.

But Denning is quick to make clear that his study does not mean that race is obsolete in terms of HIV risk, especially when one looks at who is disproportionately impoverished and affected by these issues in the U.S. "Because African Americans are 4.5 times as likely as whites to live in poverty and Latinos are four times as likely to do so, the findings could account for many of the ethnic and racial disparities in human immunodeficiency virus infections in this country," said Denning.

It may be frustrating to many that it took almost 30 years for this kind of study to be conducted, but at least the message is finally clear: "We need to address larger environmental issues, such as poverty, homelessness and substance abuse, which are well beyond the traditional scope of HIV intervention," said Kevin Fenton, M.D., the director of CDC's National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention. "Addressing those is as essential to HIV prevention as providing condoms."

Hopefully, Denning's work will serve as a catalyst in ushering in this change.

5. David Munar: Making "the People's HIV Plan" a National Reality

David Munar
David Munar

Without the work of many U.S. activists, such as David Munar, the U.S. National HIV/AIDS Strategy (NHAS), which was released in July 2010 by the U.S. Office of National AIDS Policy, may have never happened.

Munar, who was recently promoted to CEO of the AIDS Foundation of Chicago, was a major figure in coordinating the Coalition for a National AIDS Strategy, an alliance of organizations from across the country who were tired of haphazard approaches to the development of a national HIV/AIDS strategy. They believed that the strategy should be a clear and concise plan with set goals in mind, in the same manner as the widely lauded U.S. President's Emergency Plan for AIDS Relief (PEPFAR), which benefits resource-poor countries.

Over the years, the coalition reached out to organizations across the country, gaining support. In 2008, it aggressively sought out politicians to talk about the need for a national strategy. It gained massive Democratic support and even Republican presidential candidate John McCain signed on. Munar's role in bringing about the NHAS was larger than the Coalition for a National AIDS Strategy; he was also instrumental in the 2007 Prevention Justice Mobilization coordinated by Community HIV/AIDS Mobilization Project (CHAMP). That coalition advocated for a "prevention justice" framework to be added to the NHAS. "Prevention justice" recognizes that the disparities we see in HIV prevention are not just directly linked to those who are labeled as "most at risk" -- MSM, intravenous drug users, sex workers and their clients -- but also to the social, economic and political issues that drive the epidemic, such as poverty, racism, homophobia and gender inequality.

This framework, in the same manner as Denning's study, calls for a different way of approaching HIV prevention that falls outside of the conventional approaches that have been relied on over the years. And thankfully, it has been incorporated into the NHAS.

Yet, since its release, the NHAS has garnered its share of jeers. Some have said that it doesn't adequately address housing; that its goal of reducing new infections by 25 percent by 2015 may be too lofty; that certain marginalized communities, such as Native Americans, might fall through the cracks; and that this strategy might fall flat without extra funding (it was later announced at the United States Conference on AIDS that the NHAS would receive an increase in funding in upcoming years). But it does serve as a blueprint for how we can move forward. And Munar stresses that his efforts have not slowed down just because the NHAS has been released. "This effort was not just about a plan, but about getting better results," he said. "Now we have to focus our efforts on implementation of the plan to bring down infections, increase care access, and reducing disparities."

If anything, Munar's activism shows the possibilities of what a grassroots-led movement can do to advance a policy agenda rooted in social justice for communities most impacted by HIV.

Honorable Mentions

Gary Paul Wright
Charles King Jose Ramirez NAAP Logo Gary Paul Wright
  • Charles King and the Housing Works Staff: Whether or not interrupting President Obama during a speech was the best way to get his point across, no one can debate that King, along with his amazingly dedicated staff, have been a driving force in reminding America that "housing is prevention" and that more needs to be done on a policy level to ensure that people living with HIV have housing and economic stability. And they certainly aren't afraid to get arrested for the cause -- just take a look at their rap sheet.

  • Jose Ramirez: While some may recognize Ramirez from the documentary The Other City -- he was the one who told his mother to "say 'dick!'" in an effort to make her less prudish about sex -- for those in Washington, D.C., Ramirez is best known for his fierce activism. Whether he is at Mpoderate!, the drop-in center he coordinates; on MSM dating sites promoting safer sex; or in the red-light districts of El Salvador passing out safer-sex supplies, Ramirez -- who was diagnosed in 2000 -- has made it his life's work to educate young people on the importance of safer sex.

  • The Women of the Native American AIDS Project (NAAP): Since 1994, NAAP has supported individuals who are alienated not only from the general population but their own communities, too, due to HIV stigma, prejudice and homelessness. This small, but powerful, organization (which counts a number of women in significant, long-time leadership roles) provides a vital link for Native Americans in urban and rural areas nationwide by providing HIV/AIDS prevention, care and advocacy, all while staying true to native cultural and medical traditions. Upcoming projects for the organization include a monthly sweat lodge program specifically for transgender-identified Native Americans, slated to launch in spring 2011.

  • Gary Paul Wright and the Staff of the African American Office of Gay Concerns (AAOGC): AAOGC has had a stellar year. With the launch of its LGBT HIV prevention networking campaign, "Status Is Everything"; its implementation of the Sisters Informing Sisters on Topics About AIDS (SISTA) peer-led empowerment program for its transgender clients; its T.G.I.F (Thank Goodness I'm Fabulous) program geared toward transgender women; and its mentorship program for black and Latino MSM, the Newark, N.J.-based organization constantly reminds its LGBT community of color that they are not alone. Wright also sits on Newark Mayor Cory Booker's LGBT taskforce, where he lets it be known what LGBT constituents need from their public officials.

With so much amazing HIV/AIDS work being done throughout the world, we know that our list leaves off thousands. Who else rocked in 2010 and deserves recognition? Please drop us an e-mail or leave a comment below, telling us who and why!

Kenyon Farrow is a journalist who resides in Brooklyn, N.Y. Farrow is the co-editor of Letters From Young Activists: Today's Rebels Speak Out (Nation Books 2005), A New Queer Agenda (Queers for Economic Justice 2010) and the upcoming Stand Up! The Politics of Racial Uplift (South End Press). His work has appeared in publications such as theGrio.com, Bilerico.com, AfterElton.com, Utne Reader, Black Commentator, The Indypendent, City Limits_, and in the anthology_ Spirited: Affirming the Soul of Black Lesbian and Gay Identity (Red Bone Press 2006).