Dear AIDS Activist,
Thank you for your dedication to improving the lives of people living with HIV infection and to efforts to end an epidemic that has gone on far too long. The work you do work is even more impressive now, when HIV/AIDS is no longer the cause célèbre it once was and our red ribbon has joined a growing rainbow of good causes and works.
Not only is it less chic to be an AIDS activist today than it was during the height of the epidemic, but it also more difficult. Many of the goals that activists of yore dreamed of and fought for have been become everyday realities. HIV therapy has become truly kick-ass; it is convenient, well-tolerated, and becoming increasingly available to HIV-infected people all over the world. That our targets for diagnosis, treatment, and viral suppression globally are 90%, says much of what we have achieved. Here in the U.S., the number of new infections are down for the first time – especially for African-American women. And, a cure for HIV is no longer intoned as if part of a wish upon a star, as eradication of the virus has become a stated research goal and a magnet for funding. But, despite or, perhaps because of these achievements, people living with HIV infection and those who care for them still need you very much.
Beneath the surface of the encouraging national epidemiological trends, young African-American men in the U.S. South continue to become infected with HIV at astonishing and unacceptable rates - with some estimating the odds of an African-American man who has sex with men becoming infected equal to his chance of remaining HIV-negative. Federal funding for HIV care, education, and supportive services domestically and abroad are being seriously threatened with evisceration. Scientific inquiry of the impact of HIV infection on aging has been to a large degree abandoned although an increasing number of older HIV-infected people suffer, sometimes preventable, co-morbidities and are left isolated, impoverished, and neglected. Needle exchange and drug treatment programs that can stem the spread of HIV are scarce, while an opioid epidemic sprung from government–enabling of pharmaceutical industry greed reduces life-expectancy in the richest nation on Earth. In Eastern Europe, it is worse with drug users persecuted, imprisoned, and denied treatment. In parts of Africa, gay men are driven underground to avoid violence.
This sad list goes on and sheds light on the darker parts of the current HIV landscape, and that is exactly the territory where, you, the activist should live and thrive. Academics and clinicians can write and speak about these injustices and challenges but only you, activist that you are, can shout about them, be genuinely pissed-off about them, and demand that our leaders do something about them. Only you can be the sharp point that pierces indifference and ignorance. Only you have the bona fides to be loud and proud in expressing indignation that is righteous and right on target. But, with the notable exception of NATAP’s Jules Levin, the community’s voice has been muted.
At one time, attending an HIV conference was an exercise in exposure-therapy for the conflict-phobic. Podium presenters prepared not only for the probing question from peers but also for the sharp-witted and -tongued activist – eager to throw barbs against complacency (if not balloons full of mock blood). Polite colleagues might ask about sample sizes and sub-group analyses, but the AIDS activists went for the jugular, decrying the deadly slow pace of progress. At the International AIDS Conference in Paris this summer, the activism presented was either bumbling or distracted. Instead of skepticism about the ethics of the new limbo dance of research attempting to see how low one can go with number, doses, and frequency of HIV medications, a community advocate exposed his ignorance at the microphone when he painfully misunderstood the simple design of the study he was questioning. Later, rather than kicking some dust on the bright shine of HIV cure by considering the risk-versus-the-benefit of planned interruptions of well-tolerated, effective, and convenient antiretroviral therapy, a parade of activists took over the stage to dance an ode to the joys of sex and to advocate for positive messaging about intercourse for those whose virus is undetectable. We get it, sex is important, but is this really the hot button issue of our day?
AIDS Activist, please do not be dulled by success or rolled flat by the steamroller of antiretroviral awesomeness. We need you to once again be a vanguard against governmental indifference, industry overreach, and HIV medical and research shortsightedness. In research, in particular, we feel the loss of your engagement and you, once again, are needed to be a check and a balance. The demands of the infected and affected were instrumental and guided the earliest research priorities and designs of pivotal studies. Dead-end research agenda were called out as wasteful, while funding for ambitious studies of promising medications became a rallying point. Today, the science of HIV can greatly benefit from your true co-production. That means actually demanding to help create research, not just be a mostly mute study team member whose presence allows a box to be check-marked. In an increasing number of research networks, patients are at the drawing board, designing and implementing research. How ironic it is that in HIV research, where the roots of such co-production can be found, we are behind the times.
Just as important is your role in the resistance pushing back against advances by the U.S. government to fund of border walls and the slashed taxes for the wealthy, at the expense of healthcare programs that make medical care affordable and accessible to people with HIV, and millions of others. Policies that harmed people living with HIV were once met with responses that were fierce and noticed. Now, it is mostly white-coated healthcare providers with the bullhorns trying to get the policy-maker or journalist to pay attention and protect the voiceless.
I understand that clinicians, researcher, and the pharma industry saved your life, but it is not biting the hand that feeds you to question motives and demand action, in fact, it is your obligation. To be clear, what I am calling for is not Molotov cocktails, or die-ins (at least, not yet), or yelling for the sake of yelling. The early AIDS activists laid a foundation for a new kind of advocacy, one that involves an informed front line of individuals who have a personal stake in the fight against HIV - people who can use their voice to take a meaningfully stand on issues that matter most. You have tremendous responsibility but also potential power to, once again, be a reckoned-with force. We again need your bold and constructive activism to be brought to the conference hall, the committee hearing room, the press conference, the research study team meeting, and, when required, the streets. We again need your activism now that people mistakenly think HIV is over. We again need your activism to step up, push back, and not back down. But above all, we again need your activism to be active.
David Alain Wohl, MD, is a professor in the Division of Infectious Diseases at The University of North Carolina at Chapel Hill and the director of the North Carolina AIDS Training and Education Center (NCATEC).
Click here to read a response to this open letter from AIDS activist Anna Forbes.