December 13, 2011
Table of Contents
As an action-packed year for the HIV/AIDS community draws to a close, TheBody.com takes stock of 2011 in a new series of articles, "2011 HIV/AIDS Year in Review." Read the entire series here.
Here at TheBody.com, it's becoming a yearly tradition of sorts at the end of the year to spotlight a handful of amazing HIV advocates. And this year is no different.
We know that it's impossible to pay a proper tribute to all of the incredible people who work tirelessly in HIV advocacy, with little to no recognition, so this list is in no way meant to be definitive. This is just a brief sampling of a few incredible advocates who, in a sea of adversity -- budget deficits, layoffs, stigma, exclusion and ever-present AIDS Drug Assistance Program (ADAP) waiting lists -- somehow achieved transformative success and made a serious difference in our community.
Here are TheBody.com's outstanding HIV advocates of 2011.
Five years ago, Naina Khanna was at an event in San Francisco commemorating the 25th anniversary of the AIDS epidemic, when people living with HIV were invited to come up on stage. At least 200 men came up, but no women joined them. With trepidation, Khanna, a young South Asian woman who was diagnosed with HIV in 2002, decided to take the stage and speak out for the first time.
"I told myself this was going to be in the newspapers tomorrow," she recalls. "People are going to think this is what the epidemic looks like. And I was like, 'I can't let that happen.'"
Since then, Khanna, 34, has become one of the country's leading advocates for women living with HIV in the U.S. In 2008, she became the first coordinator of the Positive Women's Network (PWN), a membership organization of HIV-positive women run by Women Organized to Respond to Life-Threatening Diseases (WORLD), which works collectively to demand effective policies that meet the needs of HIV-positive women.
Since PWN's formation, it's become even more clear how much a coalition of strong, female, HIV-positive advocates such as theirs is sorely needed: Despite rising AIDS rates among women in the U.S., President Obama's National HIV/AIDS Strategy provided no specific strategies for preventing and treating HIV in women. And as state and federal governments slash budgets, women-centered sexual health programs -- think Planned Parenthood -- have been among the first items to be tossed onto the chopping block.
Fortunately, under Khanna's leadership, PWN, which is based in Oakland, Calif., is growing in leaps and bounds.
This year, Khanna and team greatly expanded a leadership seminar that reached nearly 400 women from across the country and trained them in public speaking, media, blogging and community organizing. PWN also released Diagnosis, Sexuality and Choice: Women Living With HIV and the Quest for Equality, Dignity and Quality of Life in the U.S., a first-of-its-kind report that narrowed in on the discrimination that women living with HIV in the U.S. face in the health care system. And since January, PWN has also launched two major campaigns: the "30 for 30 Campaign," which focuses on ensuring that women's HIV issues are incorporated into new health care policies, and the "Count Us In!" campaign, which began Dec. 1, and demands that women living with HIV have better access to care and are included in HIV policy decisions, more research and data, and leadership.
Khanna and PWN are now gearing up for the International AIDS Conference in July 2012, and they aim to drastically increase U.S. female participation at the event, which will take place in Washington, D.C. They've brought on a fourth staff member who is charged with signing up female participants; they've developed a fundraising toolkit for women who need to raise money to attend; and they've trained a core group of about 10 women to speak to the media about women's HIV issues in the U.S.
Can you imagine being sentenced to 25 years in prison for having consensual, protected sex with someone? Or serving 35 years in prison for spitting on, or biting, a police officer? While seemingly extreme and unreal, cases like these are popping up all over the country.
The "crime"? Being HIV positive.
Despite being 30 years into this epidemic, 34 states and two U.S. territories have laws that punish HIV-positive individuals for not disclosing their HIV status to sex partners, and exposing or transmitting the virus to another person. There are even laws in places such as Texas and Nebraska that prosecute people living with HIV for biting and spitting, even though HIV cannot be transmitted via saliva.
Positive Justice Project logo
And while many human rights groups and public health experts have come out against such laws -- saying they discourage testing, foment stigma and cannot be carried out justly -- many people, including some who are HIV positive, still support them.
This is precisely why the Positive Justice Project (PJP) exists. The group is dedicated to ending the use of criminal law to prosecute HIV-positive people by educating, advocating and serving as a media watchdog when journalists spread misinformation in relation to these cases.
PJP, which was formed a little over a year ago, is spearheaded by lawyer extraordinaire Catherine Hanssens along with a consortium of 77 organizations and people (including POZ-founder, Sean Strub; PWN's human rights lawyer, Brook Kelly; journalist Todd Heywood; Lambda Legal's Scott Schoettes, to name a few). And despite so many barriers and so much controversy around the issue, PJP continues to push forward in hopes of making serious change. In August, PJP published the first-ever HIV criminalization palm card, an information sheet for HIV-positive people about how the law can be used against them, and what to do if arrested. So far, PJP has sent out 6,000 copies of the card to HIV service organizations around the country. Also, this fall, the coalition mediated a series of community roundtables in states with particularly high instances of criminalization, including Louisiana, Illinois and Missouri.
"As people get educated, they get alarmed," said Beirne Roose-Snyder, chair of PJP's state working group and managing attorney for the Center for HIV Law and Policy, which tracks and reacts to HIV-related arrests and legislation in particular states.
Next up: In 2012, PJP will focus on finding additional cosponsors for the REPEAL HIV Discrimination Act, legislation that was introduced by Congresswoman Barbara Lee (D-CA) in September. The bill calls for a review of all federal and state laws, policies and regulations related to the criminal prosecution of individuals for HIV-related offenses. It is the first piece of federal legislation to take on the issue of HIV criminalization.
"The people in PJP understand that this is a human rights issue," said Todd Heywood, a journalist for the now defunct Michigan Messenger, who writes frequently about HIV. "Any time you can get legislation introduced in Congress, you up the conversation about that issue to a national dialogue level. To me, what that says is, 'The conversation is beginning.'"
PJP will place more emphasis on meeting with and educating journalists about HIV criminalization and basic transmission information, in hopes to usher in more nuanced, fair and balanced coverage about this issue, which is not really happening now. "That's key," said Heywood. "Because [so many] people get their information about HIV from the media."
In the early 2000s, when Ingrid Floyd became a board member for Iris House, a Harlem-based HIV service organization geared toward women, she was shocked to learn that so many African-American women her age were testing HIV positive and dying from AIDS. "I didn't understand why and I just had to find out why," Ingrid Floyd tells TheBody.com.
At the time, Floyd worked in the corporate world helping Fortune 500 companies improve their sales, marketing and customer service, but found herself obsessed with learning more about the epidemic and wanting to make an impact in the lives of women, especially those of color. So it wasn't a shock to those who knew her when she left her high-level position and her hefty bonuses to become the executive director of Iris House in 2005.
Since opening its doors in 1993, Iris House has provided a range of services such as support groups, professional counseling, nutrition classes, meal programs and housing assistance programs. During her tenure, Floyd and her staff have been leading the organization into uncharted territory, especially over the past 12 months.
First, this year, Floyd and her team launched the "Leading Ladies" program, which trains women involved in faith-based organizations to give HIV 101 workshops in their churches. Floyd and her team recognized that trusted church leaders can be powerful influencers of behavior, but that few HIV organizations were taking the time to educate them. "Some groups like ours offer testing through faith-based organizations, but too often it's one-time, one-touch events," she said. "We're truly giving them the tools to do this when we can't anymore."
Also, Iris House is reaching out to a population often ignored by other HIV organizations: heterosexual men. Several years ago, Floyd and her team began analyzing data about their female clientele, and they realized that about 90 percent of them had contracted HIV from their male partners. So, in September, Iris House launched its "Love Your Life -- Keep It 100 NYC" campaign, which encourages 18- to 24-year-old, heterosexual men to practice safer sex.
The reaction to both programs has been astounding and what's even better is that Iris House has some serious reach. In 2010, the organization impacted almost 32,000 people in Central and East Harlem, areas with some of the highest HIV prevalence rates in the entire city. And it is expanding -- this year, Iris House opened a third office in the South Bronx, another neighborhood with high HIV rates.
Looking back on it all, Floyd is clear about the biggest difference between the corporate world and Iris House. "We're not focused on a product," she says. "We're focused on saving and improving the lives of our clients."
In rural Alamance County in eastern North Carolina, where intravenous (IV) drug use is on the rise, a bearded man stands on a heavily trafficked drug corner, offering up sizzling slices of barbeque. For those interested, he also has harm reduction materials, contacts for health services and condoms.
This is what Robert Childs has been doing for the past two years: heading up the Durham-based North Carolina Harm Reduction Coalition (NCHRC). By learning to speak to the values of his constituents, he is radically changing how conservative North Carolinians view harm reduction services, including needle exchange programs.
In doing so, he is on a path to save hundreds, if not thousands, of lives. According to Human Rights Watch, the state is home to approximately 50,000 IV drug users. Since the beginning of the epidemic, more than one in five people with HIV in North Carolina acquired the disease through IV drug use, one of the highest percentages in the country.
NCHRC is a service and advocacy organization focused on building bridges between law enforcement, drug users and other marginalized groups. While there, Childs has shifted the conversation about harm reduction from one that emphasizes drug user rights to one that emphasizes how harm reduction services -- such as access to clean syringes -- help the greater community by preventing police needle sticks and saving money.
The reaction has been unprecedented. This year, Childs and his tiny team (there's just one other employee, plus a few part-timers) have given 100 syringe access trainings around the state, about 20 of which were attended by police officers. They've also started a petition urging support for a syringe decriminalization bill, and so far, not a single officer has refused to sign. Recently, two former cops signed on to give syringe access trainings to other officers. Childs estimates that the trainings have reached 3,500 people.
The bridge-building approach has also won him access to legislators, and NCHRC has met with nearly 180 since 2009. "If you want to create change, you have to engage people who have not been part of the conversation," he said. "We've even ridden the Tea Party sentiment, which is anti-government regulation ... So we talk about how this is a cost-savings program that doesn't cost society a cent."
Childs has committed to passing a syringe decriminalization law in North Carolina, and he's pushing for a republican to introduce one in the 2012 session. "Oftentimes, in the South, we look at what our neighbors are doing," he said. "And if we can get this passed here, we can move it to other states and trying to get it passed there, too."
Childs has also arranged a meeting with the head of the state's police training organization. "If the meeting goes well," he said, "we'll be able to train people from every district in North Carolina."
Gregorio A. Millett
In August, the U.S. Centers for Disease Control and Prevention (CDC) dropped some very disheartening news: While HIV infection rates in almost all groups are relatively stable, the rates for young, black men who have sex with men (MSM) soared by 48 percent from the years 2006 to 2009. Other data suggest that almost one in three black MSM are positive (compared to about one in six white MSM) and that young, positive black MSM are also among the least likely to be aware of their infection.
Thankfully, there are some black researchers in the field who are committed to finding out what is driving these numbers among this vulnerable community. By thinking outside of the box and paying attention to a group that gets less attention on the research end, Gregorio A. Millett, David Malebranche and Errol Fields are seriously shifting the conversation about black MSM and HIV transmission risks.
Over the years, Gregorio A. Millett, M.P.H., the CDC/HHS Liaison to the White House Office of National AIDS Policy (ONAP), has contributed a lot to studying black MSM. His work has highlighted that, while black MSM report fewer risk factors (unprotected sex, number of partners and drug use) than their white counterparts, HIV in the black MSM community has been increasing over the years. He's been clear: The interconnectedness of homophobia, racism, economic insecurity, undiagnosed and untreated STDs, and other factors beyond just personal behaviors help explain these numbers.
Recently, he published an eye-opening study about black MSM who were unaware of their HIV status. By analyzing over 1,200 black and Latino MSM, some surprising trends among this unaware group emerged (of the 11 percent who tested positive, 18 percent were black and unaware): they earned a somewhat higher income; they believed that having sex with other black men actually reduced their HIV risk; and while black men are least likely to disclose their sexual orientation to their health care provider, even the men who were disclosing were still not being tested. Millett believes that these trends illuminate how pervasive stigma is, how black MSM are falling through the HIV testing cracks, and how even 30 years into the epidemic, there is still a serious lack of education around this disease.
Throughout Associate Professor David Malebranche's impressive career at Emory University's School of Medicine, he's helped his colleagues debunk the down low's impact on the HIV epidemic among African-American women; explored black bisexual men and disclosure; studied the link between sexual abuse and HIV risk; and even called out Oprah in an open letter for using her show to continue to stigmatize gay black men. This year, he used a scale originally created to test gender role conflict among white straight men to see if feelings of not living up to societal masculinity may impact condomless sex among black MSM. While Malebranche didn't find the results he was looking for, this doesn't mean he was completely off base. The scale itself wasn't created with race and cultural differences in mind -- what impacts white straight men is different than what impacts gay black men. Hopefully, Malebranche will continue to tinker with this notion of how homophobia and societal perceptions of masculinity collide with the sexual behaviors of black MSM. We definitely believe that he is on to something.
And finally, Children's Hospital Boston and Boston Medical Center's Errol Fields, M.D., Ph.D., M.P.H., caused a mini-media firestorm this spring when his small-scale study suggested that young, black, gay men prefer "masculine" men as partners because they believe that such partners are less likely to have HIV in comparison to more "feminine" partners. He also found that partners who are perceived as being more masculine have the most control in terms of what kind of sex the couple is having and whether condoms will be used -- somewhat similar to gender roles in heterosexual relationships. Most important, Fields believes that this smaller study could lead to much-needed larger-scale work that focuses on understanding what masculinity means, and how societal and familial homophobia impact gay black men and risk of HIV transmission.
With 2012 around the corner, all we ask is keep the innovative research coming, gentlemen.
It's well known that our media doesn't do the best job at covering HIV in America. But thankfully, there are amazing journalists (other than TheBody.com's staff and bloggers, of course) who really get it. Some of whom are: Todd Heywood from the now defunct Michigan Messenger, who is busting the chops of his state's health department for its shady practices and questionable HIV criminalization laws. The Black AIDS Institute's editorial staff (Phill Wilson, Hilary Beard and company), which not only covers the HIV epidemic in the African-American community, but makes sure that that work appears in other newspapers and online publications. Housing Works' staff, for reporting on a range of NYC-related HIV, housing and policy issues. The staff at Windy City Times, for their phenomenal nine-month series AIDS@30, which highlighted a vast range of issues pertinent to the community. Kai Wright and the editorial staff at Colorlines for having a progressive, racially conscious and sex-positive approach to covering the epidemic. And the staff of the San Francisco Gate, for great overall coverage about HIV, but especially around the PrEP debate and the city's actions in curbing new HIV infections and getting people linked to care earlier. Thank you all for shifting the conversation this past year.
Last year, Haywood, the executive director of the New Orleans-based organization Women With a Vision, Inc. (WWAV), made our list with her work fighting HIV criminalization laws and sex worker discrimination. WWAV was cofounded by Haywood's mother and several other black women in 1991 as a response to the non-existence of HIV prevention resources for those women who were the most at risk: poor women, sex workers, women with substance abuse issues and transgender women. This year, Haywood deserves recognition as an honorable mention because of the success that she and other advocates in her state had getting outdated crimes against humanity laws overturned. Under those laws, sex workers had to register as sex offenders for a maximum of 10 years and have the words "sex offender" printed on their photo identification cards. This past June, Governor Bobby Jindal signed into law a bill that effectively moves prostitution convictions back to the level of a misdemeanor.
Asian & Pacific Islander Coalition on HIV/AIDS
"Forty-one percent of transgender people have attempted suicide and 20 percent of transgender people have been refused medical care," says Dr. Robert Murayama, the chief medical officer at the Asian & Pacific Islander Coalition on HIV/AIDS (APICHA). Murayama's major goal? Reversing those statistics.
That's why, this past November, APICHA, one of New York City's most progressive, LGBT (lesbian, gay, bisexual and transgender)-focused health centers, has opened the doors to its Transgender Clinic. The clinic offers a full menu of health services for the transgender community, including mental health, hormone therapy and support during transitioning and beyond -- all within a primary-care model that promotes health and wellness, a first for area transgender clinics. It's important to note that APICHA's multilingual staff won't stop at providing medical services; they'll also be conducting transgender-specific sensitivity trainings for partner organizations in Asian and Pacific Islander communities.
Nelson Vergel, HIV wellness expert and founder of the Body Positive Wellness Clinic in Houston, has posed some pointed questions this year: See his "Will You Be a Hero for the Cure?" and "What Can We Do Now to Speed Up HIV Cure Research?" articles for examples.
Vergel's goal has been clear -- to keep the conversation about a cure for HIV on the community's mind. He also wants people to know that this push isn't just coming from him, but that there's a movement led by researchers and advocates who are doing whatever it takes to develop a cure. In the past year, in collaboration with other activists, Vergel has created a short video with top researchers breaking down the latest in the search for a cure (a full-length documentary is forthcoming), as well as a new survey to gauge HIV-positive people's willingness to participate in HIV cure research in the first place. Most important, in the spirit of "each one, teach one," he and his colleagues want all who encounter this information to spread it far and wide, so that as many people as possible can join the struggle for a cure. Will we live to see the cure? Only time will tell, but Vergel is hopeful.
"There are only 2,000 members of the Onondaga Nation, 700 living on their reservation in upstate New York. Three years ago, among this great Nation there were three new cases of HIV," explains Harlan Pruden of the NorthEast Two-Spirit Society (NE2SS). "But when you're talking about the entire universe being 2,000 people, one is too many for a preventable disease." According to Pruden, this story is applicable for indigenous populations across the U.S. This year, NE2SS rolled out the findings of "Reclaiming Our Voices: Two Spirit Health and Human Service Needs in New York State." The report is the first ever to examine the health and service needs of Native LGBT or two-spirit (an umbrella term used by many contemporary Native people across the LGBT spectrum) communities in any U.S. state. Pruden was a coauthor of the report, and the statistics it reveals do not paint a pretty picture of the experiences of Native LGBT individuals. "If these numbers hold true for largely progressive New York state, I shudder to think what's going on in Bismarck, N.D., or Boise, Idaho," Pruden laments. "It's a great step forward that New York state has released this report -- people working in this community can now say, 'This is what we know is happening in New York; perhaps this is happening in our own community.' But if it's not married to a reallocation of resources toward those most vulnerable, it's nothing."
Just three years ago, as we wrapped up 2008, there were 53 people living with HIV on ADAP waiting lists in only three states -- and for a few months prior, the list had remained at zero. Fast forward to the end of 2011, in the midst of serious budget cuts and deficits: As of this writing, there are 4,155 people on waiting lists -- with a peak dangerously close to 10,000 this past September.
But there's good news: HIV activists are not taking this turn of events lying down. There has been a vigorous response across the country -- from large groups and small, individuals as well as national organizations. For instance, three Ohio residents living with HIV successfully fought the "murder by proxy" of lowering income eligibility for their state's program. Meanwhile, the National Minority AIDS Council launched its "ADAP Beyond the Numbers" campaign, which aims to put a range of faces on the ADAP crisis by providing ADAP clients with tools to share their own stories -- and build their own local advocacy campaigns. Three former journalism students also made adapting -- a short documentary film that highlights, through the stories of two ADAP clients in Illinois, the brutal and all-too-common Catch-22 between making ends meet and paying for HIV meds. And for the activist coalition Campaign to End AIDS, ADAP advocacy remains a vital part of its agenda in many states, particularly in the U.S. South.
This list just begins to paint a picture of the range of advocacy being done throughout the U.S. -- which no doubt played a part in the recent allocation of new funding for the program for next year. But as we enter 2012, the ADAP struggle continues.
With so much amazing HIV work being done throughout the world, we know that our list leaves off thousands. Who else rocked in 2011 and deserves recognition? Please drop us an e-mail or leave a comment below, telling us who and why!
Julie Turkewitz is a journalist with a deep commitment to exploring the roots of social injustice through writing, photo and video. She's written for The Baltimore Sun and The Atlanta Journal-Constitution, worked in Thailand and Argentina, and spent the past two years writing about AIDS and homelessness for the nonprofit Housing Works. She lives in New York City. See her work here: www.julieturkewitz.com.
Olivia Ford is the community manager for TheBody.com and TheBodyPRO.com.
Kellee Terrell is the former news editor for TheBody.com and TheBodyPRO.com.
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