August 28, 2009

“Make Us All a Priority” Demand HIV/AIDS Advocates

On August 25, the Centers for Disease Control and Prevention's 2009 HIV Prevention Conference in Atlanta hosted the first “HIV/AIDS Community Discussion” (a.k.a. "town hall") to start the process of seeking input from people living with and affected by the virus in the creation of a national HIV/AIDS strategy.

The Office of National AIDS Policy (ONAP) in the White House will draft the strategy. The three major goals (a.k.a. “pillars”) of the strategy are: reducing HIV incidence; increasing access to care and optimizing health outcomes; and reducing HIV-related health disparities.

As moderator of the event, Dazon Dixon Diallo, founder and president of SisterLove, introduced Jeffrey Crowley, ONAP’s director. Before Crowley said a word, several protestors got up from the audience and took the stage.

Holding a large sheet bearing the phrase “Women >26%” (referring to the statistic that more than 26 percent of HIV infections in the United States as of 2006 were among women), the protestors chanted: “Make women a priority.” As the crowd joined in, the protestors chants eventually substituted “women” with many other groups, ending with the inclusive phrase “we all are a priority.” As they walked into the audience, the protestors chanted "make us all a priority."

The protestors were greeted with a mixed reception from the audience. The three people on stage—Diallo, Crowley and Kevin Fenton, director of the National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention—applauded in support. The audience applause turned into chanting.

The U.S. Positive Women’s Network (PWN) was responsible for the protest. Former POZ cover woman and PWN member Waheedah Shabazz-El spoke with POZ after the event. “The only way to have our voices heard was to be a little disruptive,” Shabazz-El told POZ.

Watch the Shabazz-El interview and footage from the protest below:


After the protestors left the stage, Crowley said: “That’s some good energy.” To underscore his desire for dialogue, Crowley told the audience in his opening remarks: “I had my chance to speak, tonight is your night.”

Crowley then introduced Rep. John Lewis (D-GA), who spoke passionately about the importance of fighting HIV/AIDS in the African-American community. “Let’s make more resources available through the Ryan White act—we must do it,” said Lewis.

Fenton followed with a speech that detailed his goals for a national HIV/AIDS strategy. He emphasized the importance of an inclusive strategy for all, but especially for those groups “who are often invisible” in national surveillance data but who are nonetheless disproportionately impacted, such as transgender people, Asians and Pacific Islanders, Native Americans and migrant workers.

Diallo then introduced three local community leaders: Edith Biggers, MD, the lead physician of the Fulton County Department of Health and Wellness Ryan White Clinic; Carlos Del Rio, MD, an infectious disease researcher and a professor at Emory University; and Guy Pujol, the executive director of the AIDS Alliance for Faith and Health. Each was invited to discuss one of the three “pillars” of the strategy.

Biggers recounted the dramatic story of an HIV-positive, pregnant woman without health insurance. She was almost admitted to a hospice, but a social worker with knowledge of the Ryan White program got her life-saving treatment. She gave birth to an HIV-negative baby daughter. Biggers said that reducing HIV incidence requires that we all remember we’re talking about people. “I always want to put a face on HIV,” Biggers said.

Del Rio hammered the point that HIV prevention has not failed because of methodology, but because it has been poorly funded. “The [HIV] epidemic in the U.S. is the worst [HIV] epidemic of any developed country,” Del Rio said. “What we need is something equivalent to a national [domestic] PEPFAR” to optimize health outcomes, he said.

Pujol focused on the use of the phrase “health disparities” as a barrier to reducing HIV-related inequalities between groups affected by the virus. “Rather than to talk about differences or gaps, I think we need to talk about inequality or better yet, equality,” Pujol said. Using a term like “health inequalities” would reframe the conversation and lead to better outcomes, he said.

Diallo then took the reins of the event, preparing the audience for its opportunity to provide feedback. She made it clear that an orderly process was not only expected, but that it would be enforced. Comments were limited to one minute per person. She even subjected herself to the time-keeping rules enforced by the audience to big laughs from all.

She also made it clear that she would favor giving time to local people from Atlanta because there would be other town halls around the country and many in the audience had traveled to Atlanta from those cities.

The audience participation portion went off without interruptions. There was about 45 minutes available and not a moment went by without someone new at one of the six microphones throughout the auditorium making his or her voice heard.

Some of the themes from the vast array of comments included: focusing on groups that have previously been ignored, such as transgender people, Asians and Pacific Islanders; maintaining the treatment and prevention advances that have been attained, such as in the reduction of mother-to-child transmission; increasing faith-based approaches, especially in the African-American and Latino communities; authorizing needle-exchange programs; and providing comprehensive sexual education in schools.

Additional community discussions will take place in Washington, DC; New York City; San Francisco, Oakland and Los Angeles, California; Los Angeles; Houston; Albuquerque; Jackson, Mississippi; Fort Lauderdale; Minneapolis; Columbia, South Carolina; Puerto Rico; and the U.S. Virgin Islands.

Please visit poz.com/advocacy.

NEW! Scroll down to comment on this story.

Previous Comments:

Bradley Fowler, Canton, 2009-12-24 03:18:16
I am excited to hear about this effort being launched within the HIV/AIDS community. It is well over due for serious change, and implementing such an intiative provides hope to those who are living with HIV or AIDS. I too have begun to launch an initiative. My mission is to encourage those living with HIV/AIDS to stop spreading this disease. I am HIV positive and have been for over ten years.

Trish Steen, Kansas City, MO, 2009-11-03 10:03:20
I agree with Celestial. I do know that women, especially black & latino, are disproportionately affected by HIV, but every time we leave out a sector of society it seems that infections begin to rise in another group. Everyone is affected by HIV and we should be educating the entire public. Prevention as I see it now - not as effective as it could be. Prevention & education efforts in the general public are A MUST. No one is immune from HIV. Prevention among positives is not the only way to go.

Trish Steen, Kansas City, MO, 2009-11-03 10:01:43
I agree with Celestial. I do know that women, especially black & latino, are disproportionately affected by HIV, but every time we leave out a sector of society it seems that infections begin to rise in another group. Everyone is affected by HIV and we should be educating the entire public. Prevention as I see it now - not as effective as it could be. Prevention & education efforts in the general public are A MUST. No one is immune from HIV. Prevention among positives is not the only way to go

Rene, Arkansas, 2009-09-24 20:12:58
I realize that most of us became HIV infected as a result of our choices, but how can our government just take away any assistance that was giving us life. I was an IV drug user for 26 years, shame on me, today I celebrate over 5 years sobriety as well as 5 yr HIV diagnosis. Have been on meds for 2 years, but now Arkansas ADAP says I am to wealthy, please, give me a break I am a working person just getting by. Have been dropped from the program no meds after 12/31. Am I supposed to just die?

Frederick Wright, Tampa, 2009-09-16 10:14:51
I thinking this is a dog and pondie show for most in HIV advocacy like Poz Mag are way behind the times compare to Europe and what about new progressive policy like , Titration of Drugs, Over the Counter Rapid HIV Testing for sale without a scrip, ARV's on demand for pre-exposure, and open and honest discussions about stima, shame and guilt connencted to HIV people. And o'course the old policy of needle exchange and yes ,the little travel ban issue. The Global Network of Positive People USA

Celestial, Fremont, CA, 2009-09-02 18:06:50
As a regular volunteer for a major HIV/AIDS harm reduction for the past 5 years, the thing I've noticed is the lack of support for hetro females, period. Tired of $$ going towards pregnant women, specific female ethnic groups, etc... Women need help across the board!!! I live on less than than $1300 a month, minus healthcare expenses. I don't 'qualify' for full medi-cal coverage ($400 out of pocket per month), unless I had a kid! Ridiculous!

Brian K. Wiseman, Abilene, Texas, 2009-09-02 10:23:49
First of let me start by saying i have been dealing with disease for 3 years now, and have come along way. I am very upset everytime i open a paper, magazine, and every one saying balck this and black that, and latino, let me remind that there are also white people out there dealing with this issue as well!!!!!! Support should be given to every one of color, not just the blacks, so quit playing the poor me card, i'm sick of it. Where is all the white support at these days????

James Ozmun, Cleveland,Tennessee, 2009-09-02 08:53:30
No matter what group,need,or issue there is pertaining to the AIDS epidemic, the one thing that should have been done foremost in this country was to educate this country. Educating should've been priority all along. Instead all was swept under the rug. Everybody has a story. All I want is educational facts and how exaggerated fear of infection is. The virus, knowingly, thrived in our country six yrs before we started dying. Why? Do you know who Gretha Raske was? Why not? Educate people.

Cliffwms44, PHILADELPHIA, 2009-09-01 16:41:00
cliffwms44 I stand with positive woman's network and, for homeless men and woman with HIV/AIDS for solutions in housings before they have an AIDS diagnoses. HOUSING IS HIV PREVENTION AND HEALTH CARE!

kenneth, , 2009-09-01 14:10:21
close the Medicare Donut Hole... change the asset limits on ADAP, to No Asset Limits like many states... so people can assure they have what they need for their later yeats without spending down and living without any safety net

miguel Ayala, Kissimmee Fl, 2009-09-01 11:18:22
i have been Hiv+ for the last 29 yrs and clean off drugs for the last 7 yrs I now would like to become an Aids activist and a Drug counslor I was saved from a coma and I truly believe that I have a reason to live and that's to share my story and hopefully save a life from doing the things i did I would like any information on how to go about doing this i live in florida and florida can really use more people thank you sincerelly Miguel Ayala

Phil Ramsey, Panama City, Florida, 2009-09-01 10:00:53
I am HIV+ and have been for over 20 years and I think it is about time for something to be done to help us, medically and finacially.