When I started volunteering there in December 1992, Project Inform remained persistent in its message that you could take charge of your own health, all the while struggling against the pain of losing friends, lovers and family members to AIDS. The all-volunteer hotline consoled and empowered thousands. Our publications served as roadmaps to survival. And our Founding Director, Martin Delaney, took a message of hope on the road, urging people to put their trust and faith in the rapid pace of science spurred on by activists like him and the dedicated scientists and health care providers he worked with.
I saw that hope up close and personal. As an outreach coordinator, I traveled with Marty to nearly 50 American cities a year between 1993 and 1996. December of 1993 was a particularly grim month. The large CONCORD study showed that AZT alone offered no survival benefit over a placebo despite earlier data indicating a boost in CD4 cells. It not only called into question the potency of antiretrovirals, it prompted some activists to insist that early markers, such as CD4, couldn't be trusted as indicators of benefit. It was such an emotional and psychic blow that I remember people essentially giving up on the possibility that they might survive.
Marty remained relentlessly focused on the belief that combination therapy offered more. Dual combinations of AZT plus ddI and AZT plus 3TC seemed superior to any of the individual drugs by themselves. His optimism was rooted in the data, though experts argued about what the data meant. Then along came protease inhibitors.
I remember standing in the back of rooms filled with sometimes more than 250 people n 1995. In Dallas, Miami, Kansas City, and countless other places, the message was the same. Triple combination therapy with a protease inhibitor was literally bringing people back from the brink of death. People gained weight. KS lesions shrank and disappeared. Combination therapy even pulled people back from certain loss of brain and bodily function from one of the most terrifying diseases, PML. Marty had early peeks at the data through his advocacy work with the companies, and though he couldn't officially publish them, he did confirm that the rumors of unparalleled success were true. He strongly urged people to hold on just a little longer, that hope and help were on the way. I don't know if I will ever be able to adequately describe what it feels like when a crowd that large rapidly shifts despair to joy, but I know the same thing happened in Vancouver at the International AIDS Conference in 1996 when the final study results were made public.
On July 20, 2016, thousands of people from across the globe will gather for the International conference once again, this time in Durban, South Africa -- the site that in the year 2000 catalyzed a revolutionary commitment to bring combination therapy to millions in Africa and others in the global South. At this year's conference some of the focus will be on two areas that Project Inform has contributed to over the past six years: research toward a cure for HIV and the development of a multi-pronged approach to ending the epidemic.
Some argue that we are decades away from anything resembling a cure for HIV, at least one that would be deliverable to people in low-income countries. Likewise, there are those who dismiss public commitments to end the epidemic in a city, a state or a country. My colleagues and I at Project Inform are rooted, however, in the belief that we can make great progress. Our hope and optimism are based on data and reality. In the 35 years since the first reported cases of AIDS, we have discovered the causative agent, developed safe and tolerable treatments that allow people with HIV to live normal or near normal life spans and reduce the risk that they will pass on the virus to a sex partner by nearly 100%. We also now have the first of what will surely be many biomedical prevention options that are transforming discussions about sexual health and in some places starting to break down some of the stigma that serves as a life crushing weight on ourselves and our communities.
I am honored to serve on a community advisory board (CAB) of an HIV cure enterprise named after Marty. The CAB offers input to some of the most ingenious scientists working on an HIV cure. We also provide education about cure science to people living with HIV and to community leaders and in turn learn from the community what they most want to experience if they choose to participate in a study and pass that along to the researchers.
Our Executive Director, Dana Van Gorder, has spent nearly two years working with colleagues in San Francisco to develop and implement a plan that seeks to end the epidemic in San Francisco. Our Director of Health Care Policy, Anne Donnelly, works to ensure that people who need treatment and services for HIV, or Truvada for pre-exposure prophylaxis are offered that care in a comprehensive fashion. Alan McCord's work has ensured that thousands of people across the country (and internationally) know more about how to manage their health, whether they are HIV-positive or HIV-negative and seeking pre-exposure prophylaxis. We also work on a disease that frequently intersects with HIV -- Hepatitis C -- which actually does now have a cure. Emalie Huriaux and Andrew Reynolds ensure that people living with Hep C have access to healthcare and treatment and that they and their providers are aware of their treatment options. Other key staff, Emily Mariko-Sanders, Philip Walker, Kevin Walsh and Louis Schilling, ensure that these vital programs are able to happen.
Recently, I led a focus group of HIV-positive women to understand what an HIV cure might mean to them and what factors would motivate or dissuade them from volunteering for studies aimed at controlling the virus without the need for antiretroviral therapy. Though cautious about getting their hopes raised, they all imagined that a cure would transform the powerful force of stigma in their lives and unanimously agreed this would be one of the most profound benefits.
Given the challenges and expense of child care, we had a beautiful two-year-old girl in the group who went from one lap to another as we tried to keep her occupied and happy. When a game or movie on the iPad grew boring we moved to cookies and crackers and cheese. When treats stopped working we offered paper and crayons. The little girl belonged to a woman in her late twenties who was born with HIV. This miracle, that she had lived when so many had not, and that she had given birth to a baby free from HIV was almost casually accepted.
When asked to imagine a cure for the virus she paused, looked at her daughter and said in a near whisper, "I just want to know that I'll live to hold my grandbabies and to watch them grow up."
That's why I do what I do, as do my allies at Project Inform and all over the world -- to do the hard work on the science, and the advocacy and the policy work to turn her hope, and our hopes, into reality.
David Evans is director of research advocacy at Project Inform.