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Natural Habitat, or, "Who Said Activism Was Dead?"

Dedicated to Larry Bryant and All HIV/AIDS Activists

By Loreen Willenberg

September 10, 2008

Sacramento, California

I spent the first week of August glued to my computer screen, watching many hours of webcasts and reading blogs from the XVII International AIDS Conference in Mexico City. As a treatment and research advocate, I, like thousands of other interested parties from all over the world, hoped to learn about the new discoveries that science had to offer in the field of medication, and the clinical trials that produce those discoveries. I was also looking out for any ground-breaking announcements that might occur on the vaccine research front.

In addition to the many things I learned on those topics, I discovered this truth: Activism is alive and well across the globe and our work is far from over. This was evidenced through protests, banners, posters, drums, feathers, T-shirts, panel discussions, chants, messages -- some loudly delivered by activists from the back of a session room -- and, on one occasion, an unscripted invitation to activists to deliver their message from the stage.

I found all of this activity to be quite inspiring, as I have listened to the discouraging dialogue of the recent past: dialogue that heralds the death of activism, mainly through complacency; shines the spotlight on the inevitable "burn out" of those aging and heroic veteran activists from the past; and bemoans the lack of such activists who will carry the baton next in this struggle.

Outright calls for the rights of all PLWHAs [people living with HIV/AIDS] to compassionate care, dignity and access to treatment, and for the discontinuance of homophobia, stigma, discrimination and repressive policies toward gender equality were delivered across the board. The call for a "marriage" between prevention and treatment efforts was brilliant, too, as these camps have drifted into the realm of competition that dilutes success in either category. Of particular importance was the broad support for the development and implementation of a national AIDS strategy in the United States.

As each of us absorbs the startling news from the CDC [U.S. Centers for Disease Control and Prevention] report revealing that the number of new infections in the United States amounts to an additional 50,000 to 60,000 cases each year -- a 40-percent increase -- it is obvious to me that every person, whether HIV positive or not, has to make a concerted effort to get educated and to educate others about this preventable disease.

As a relative new comer to the HIV/AIDS advocacy field, I have spent the last four years developing my voice and searching for my "niche" -- that place where I can become most effective in the campaign to end AIDS. Deemed an "HIV controller" by science, I am naturally drawn toward research, and toward advocating for the development of a preventative and/or therapeutic vaccine. This surprising health circumstance also catapults me into other realms of equal importance -- gender equality, empowering HIV-positive women, policy change, funding issues, mentoring youth -- and each topic demands my attention.

Three weeks ago, it was my privilege to dine with a well-known advocate from Washington, D.C. Larry Bryant is the national organizer from the Campaign to End AIDS, and he is busy coordinating the action called "Stand Against AIDS" -- a convoy of nine separate caravans throughout the United States that will travel to the site of the first presidential debate on September 26, 2008, in Oxford, Miss., in support of a national AIDS strategy.

Larry and I spoke of many things that evening, including the history of his advocacy "walk" in Texas, volunteering with an AIDS service organization to deliver meals and visit hospices filled with people afflicted with progressive HIV disease. "It was important to me," he said, "to work directly with the HIV-positive community." Eventually, his dedication and hard work attracted the attention of Charles King, founder of Housing Works (a national advocacy agency), and led to an offer for Larry "to do in Washington, D.C., what you do here in Texas."

As our evening drew to a close, Larry grabbed his camera and began taking pictures of the many plants in containers outside on my small patio. I watched as he focused his lens on a light blue ceramic stepping stone and heard him whisper, "Natural habitat."

Those two simple words resonated somewhere deep in my soul, as I realized this field is my "natural habitat." Between living as an HIV-positive woman for 16 years, and watching those amazing efforts by courageous activists here in the U.S. and in Mexico City, I realize that my search is not in vain: I will find my place in this complicated work -- and I am in good company in wanting to make an impact toward stemming the tide of this epidemic.

To contact Loreen, click here.

See Also
More HIV Activist Profiles and Personal Accounts


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BLOG: Life as an Elite Controller

Loreen Willenberg

Loreen Willenberg
Photo credit: Bob Roehr

Loreen Willenberg, a resident of California, has survived HIV infection since 1992. She is part of a tiny group of people with HIV that scientists call "elite controllers." What is an elite controller? It's someone with HIV who has never had a detectable viral load, although they have never taken HIV meds. She also has an astonishingly high CD4 count and has never experienced any adverse health effects from HIV. Loreen considers it her responsibility as an elite controller to help other people with HIV, which is why she's currently participating in three clinical studies in which researchers are trying to understand how people like Loreen actually control the virus. In fact, she's created a new organization for people like her called the Zephyr Foundation.

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