Next Sunday the opening session of the XVIII International AIDS Conference will take place in Vienna, Austria. The conference, which used to be an annual conference and is now biannual, will bring together clinical research scientists, social scientists, health educators and of course, people with AIDS for six days. It is an unusual conference in that it combines so many disciplines – as well as researchers and people with AIDS and HIV.
This October will mark the 30 year anniversary when a few young gay men in San Francisco and New York were treated for Pneumocystis Carnii pneumonia, reported by the Centers for Disease Control in June 1981.
The following year, the Gay Men's Health Crisis (GMHC) in New York was founded and I began working as a volunteer lawyer doing deathbed wills for men my age, which was 27. Eventually I became the Director of Legal Services at GMHC where I oversaw a range of legal services to thousands and thousands of people with AIDS. The first 16 years of the epidemic were brutal. In the earliest days, you began each day with a glance over your body for lesions, a feel of your lymph nodes for lumps. And nearly every day I lost clients and I lost friends. In my office, we had "RIP" sheets distributed so that I could keep up with the clients who had died.
During that time, I attended several of the International AIDS Conferences staged in many cities around the globe. At each, one looked desperately for some sign of hope that the sheer carnage of human life that was taking place because of the disease might abate. And then in Vancouver at the XIth International AIDS Conference, a new class of drugs was unveiled that would change the course of the epidemic entirely. For the first time, medical treatment began attacking the underlying cause of AIDS – the virus, instead of treating the symptoms.
Seven conferences later, everything has changed and nothing has changed. Mortality has abated (though not disappeared) and many people today are living who otherwise would not have been had there not been treatment breakthroughs that people could access.
In anticipation of this year's conference, there is more hope. Good news released this past week whereby researchers discovered two antibodies that may neutralize HIV strains. If so, this discovery could advance the development of therapeutic vaccines for other diseases as well as HIV. It is a discovery that, like the advent of protease inhibitors, could change the course of the epidemic.
But there is also cause for concern. In the U.S., the backbone for access to life-saving medications is through funding of the Ryan White CARE Act – federal legislation that, among other things, funds state programs called AIDS Drug Assistance Programs (ADAP). States have been facing a shortfall in funding, meaning that they are having to create waiting lists for access to care. This prompted the Obama Administration to announce last week the reallocation of $25 million to fund the program for states. That will not be a long-term solution and how longer term solutions are addressed may depend on political wrangling.
Access issues are not confined to the U.S. In addition, the President's Emergency Plan for AIDS Relief (PEPFAR) also faces funding challenges and HIV advocates have complained that funding for the program has not matched amounts allocated in 2008.
The clock cannot turn back to pre-1996. We must watch news out of the conference next week for that which will support our best hopes, but at the same time, address our worst fears. For those wanting to follow news, the International AIDS Society will be running a blog from the conference and the Kaiser Family Foundation will be providing on-going coverage.