What’s wrong with World AIDS Day
Long-term survivor David Phillips is not a fan. Here’s why.
I despise World AIDS Day (WAD). What seemed like a fabulous idea to unify people 24 years ago when anti-HIV monotherapies had done little to slow the pace of death from HIV around the world has become to public health what Remembrance Day has come to be for many members of the armed forces and their families: an opportunity to divert resources to create a one-day feel-good production in the face of 364 days of indifference or open hostility from the larger community.
To make matters worse, we continue invoking the nonsensical term “HIV/AIDS” and dragging the A-word around, making clear communications about the challenges surround HIV disease more difficult, even as the conversations required around prevention, treatment, structural interventions, and intersecting oppressions grow more complex.
In 1988 I, like many young activists, greeted the first WAD with all of our dark sarcasm. Were we to wish one another “Happy WAD”? Would there be a WAD section alongside Christmas cards in stores? WAD carols? WAD cookies? We smelled what was and continues to be a methodically timed publicity stunt on behalf of governmental HIV-related agencies, beginning with the United Nations, that quickly spread to national, local, and organizational observances with ever-changing themes regarding human political, financial, and social neglect of HIV and those living with the virus.
It’s almost a blessing that the UN theme from 2011 “Getting to Zero” continues this year and through 2015, so less reinvention of the observance wheel will be required! But considering that the 2002-03 theme “Stigma and Discrimination” remains a hot topic 10 years later, one should not assume that the Getting to Zero goal is any closer than a couple generations away!
Further, as Mike Signorile pointed out in connection with 2011 WAD, the event over the years has had a ridiculously limiting effect on when communications about HIV science, programming, and politics occur during this season. Instead of important announcements flowing freely between September and January each year, they are now too often embargoed or rushed to create an HIV show-and-tell atmosphere for WAD. The net outcomes of such actions are delays in the pace of HIV research, service delivery, and even advocacy--stuff that hurts all of us for whom every day is World Fucking HIV Day.
I hope that you noticed that I only used the A-word for my first mention of the title of UN-originated observance. To me, “AIDS” is a term that arose in a time of fear and ignorance, and slinging it around in 2012 doesn’t promote knowledge. In September 1982 the U.S. Centers for Disease Control needed to standardize how a spectrum of opportunistic infections and immune system damage was being reported, and it adopted “AIDS” over “Gay Related Immune Deficiency (GRID)”, as Haitians, hemophiliacs, and IV drugs users were also clearly impacted disparately. Another year would pass before two research teams fingered a virus as the necessary infectious agent leading to “AIDS”: two years later, months after the first test for antibodies to the virus had been released, those scientists agreed to call the virus HIV. By that point, the condition formerly known as “AIDS” could have been re-branded “HIV disease,” but for lingering doubts around causation, as no one had yet acquired HIV and not progressed to the later-stage illness.
Once the first antiretrovirals showed that HIV infection could be kept from progressing to immune system decay and opportunistic infections-and that reversing late-stage disease was possible--not changing the vernacular was reckless.
The continued use of "HIV/AIDS" incorrectly promotes the perceptions that HIV infection equals "AIDS" and that HIV infection is destined to result in advanced HIV disease, even in the age of effective antiretroviral therapy. These perceptions foster stigma towards and among people living with HIV, and they create a mental barrier that many newly diagnosed HIVers struggle to overcome. When medicine tells new HIVers that they will likely lead long and productive lives in spite of the virus, our society must describe their illness in a similar way.
On this 25th WAD, let us resolve to use language regarding HIV disease that accurately portrays the evolution of the pandemic and the impact of HIV on individuals and communities. The memory of the fallen demands it, and the instruction and encouragement of our children and friends require it.