We hope to have a vaccine ready for testing in about two years. Yet another terrible disease is about to yield to patience, persistence and outright genius.
— Margaret Heckler, then secretary of HHS,
announcing the discovery of HIV on April 23, 1984
I am not going to be here for the cure. I am not going to see the end of AIDS. And neither will you.
This isn't news to me. HIV has frustrated researchers for the last 30 years. Countless potential remedies have come along, some snake oil and some not, and my weariness over finding the magic bullet isn't just the result of feeling burned so many times before. I am just practical about science, human behavior and the fact that important HIV treatment and prevention tools are beyond the reach of much of the world's population.
What bothers me quite a lot, though, is using the cure for HIV as a carrot at the end of a very long stick. The seemingly imminent "end of AIDS" has become a rallying cry for everything from AIDS Walk pledges to research dollars. And however well-meaning these contentions might be, I find it to be a sad and cynical ploy for donations and engagement.
In an excellent piece for POZ Magazine ("Selling the End of AIDS"), Benjamin Ryan examines the current infatuation with the end of the epidemic and how various HIV/AIDS community groups and government officials are using cure-scented language as a way to attract donors and bolster public interest. Everyone from New York City officials to the American Foundation for AIDS Research (amfAR) to our national leaders are riding the bandwagon, and it feels shortsighted at best, if not outright manipulative.
Cure research advocates will be the first to tell you that we are many years away from a practical cure that can be applied to everyone who needs it, much less an effective vaccine. But that isn't stopping those trumpeting "an end to AIDS" from playing fast and loose with epidemiological trends -- or from being deliberately coy about what they really mean.
When you read the fine print of these claims, ending AIDS doesn't resemble what you're probably imagining. When the Obama administration confidently shares its vision for an "AIDS-free generation" by the year 2020, it's actually envisioning a day when no child is born with HIV. That's an entirely different proposition altogether, and is of little solace to the over two million people worldwide who are infected with HIV each year. Likewise, the ongoing fundraising appeals by amfAR to "be here for the cure" might rake in cash from hopeful donors, but as noted by Ryan in his POZ piece, even its own leadership acknowledges that we don't presently have the tools to achieve a cure.
The fact that the state of New York has adopted a plan to reverse the trend of new HIV infections is exciting, especially since it includes a renewed push for testing, treatment and the adoption of pre-exposure prophylaxis (PrEP) among those at risk. What an excellent strategy. Too bad officials undercut their own trustworthiness by saying they will "end the AIDS epidemic in New York state." Upon closer inspection, their goal is to reduce the number of new HIV infections below the number of HIV-related deaths. Oh, so that's what the end of AIDS looks like.
Our public credibility as HIV advocates is constantly at stake. We must tell the truth, whether about modes of transmission, sexual risk behaviors or the importance of treatment. We don't make claims we can't back up. We don't play with the emotions of people who, like me, have labored in the HIV trenches for the last 30 years and want nothing more than for this nightmare to finally come to an end.
It's a shame that the truth isn't good enough. In the last few years, we have determined that those living with HIV who achieve viral suppression are not transmitting HIV to their partners (known as treatment as prevention, or TasP). We have celebrated the arrival of PrEP and its astounding ability to prevent new infections. But any cleareyed advocate will acknowledge that, as exciting as these developments are, they have a finite audience and their worldwide application is not, for the foreseeable future, practical or even possible.
Politicians understand the value of making claims of impending victory and its effect on their approval ratings and war chest. We will free Iraq from dictatorship and spread democracy. We will conquer terrorist groups wherever they hide. We will pass legislation on immigration reform and gun control. Until we don't. But hey, it was a great message while it lasted. It should come as no surprise, then, that some of the cavalier promises about an end to HIV are being made by President Obama and New York Governor Andrew M. Cuomo.
Politics has always been shameless. But you would think that public health officials, not to mention community-based service agencies and research organizations, would show a little more restraint when it comes to misleading hyperbole.
Once you have announced an impending end to AIDS, it doesn't really leave you anywhere to go, except to backtrack. Shall we wipe World AIDS Day from our calendars in five years? Ten?
Worse still, the casual observer at risk for HIV, who may only absorb the most prominent messages in the public sphere, might just take "the end of AIDS" to heart -- and behave as if it were true. It was hard enough to modify risk behaviors when HIV was nearly always fatal. Imagine trying that when people think the crisis is over.
Nothing will prevent dedicated HIV advocates from continuing to work to prevent new infections and help those living with the virus. We have soldiered on through many years of false hopes, setbacks and triumphs. I am committed to a day when there are fewer infections, not more, and people with HIV have access to treatment and live free of stigma.
Just don't play me for a fool.