AIDS/HIV – Remembering and Learning from the Past

Yesterday marked the occasion of the commencement of the 19th International AIDS Conference being held here in Washington.  It is the first time a conference has been held in the U.S. for many years.  The theme for AIDS 2012 is “Turning the Tide Together.”  For those of us who are veterans of many of these conferences, the theme is poignant. That is because there was a time when turning the tide did not seem possible.

I was a legal volunteer in New York City during 1982-1984 providing legal services for people diagnosed with this new disease that seemed to come out of nowhere and begin killing young people with a brutality that was almost beyond belief.  From 1985-1988 I was Director of Legal Services at the Gay Men’s Health Crisis.  The work involved deathbed wills and discrimination actions.  The world, as seen through the eyes of those of us affected by AIDS then, was a grim place and one where hopes hung on crackpot cures that you could make in your kitchen brewing teas, growing mushrooms and thinking positive thoughts that might make the virus go away.  Death was usually swift and brutal.

Sitting in the audience of the plenary session of the 9th International AIDS Conference held in Berlin I can remember the sense of despair as the speaker described the outlook – a cure would have to be oral and it would have to be cheap in order to make a true difference in the epidemic and there was nothing on the horizon to indicate anything like that happening. Having lost nearly all my friends, having sat by so many deathbeds, having so many thousands of clients with AIDS, it was a kick to the stomach hearing those words.

And yet I have lived to see the day when treatments did become available – a day when they are oral and they are cheap enough that on a global scale, the epidemic can be put back on its heels.  Thanks to many players – from the pharma industry’s development of sophisticated drugs, to researchers burgeoning understanding of virology and immunology to the dedication of taxpayers to get treatments into the hands of the infected and many others – we may be at what some have termed a “tipping point” in this long, ugly horrible fight.

But there is caution.  Prior to AIDS there was another deadly infection that spanned the globe.  It was called tuberculosis.  It still is.  TB was once very widespread and carried off many to a premature and tragic death.  Then in the 1940s, the first effective antibiotic was developed to combat TB followed by others in the 1950s that, once there was widespread access, truly made an impact on the numbers of infected and pain and suffering.  It was a public health victory.

And then we became complacent.  Public health budgets were cut and facilities and resources pulled back.  The result was not only a re-emergence of TB on a vast global scale, but the introduction of multi-drug resistant tuberculosis (MDR-TB).    MDR-TB made its way into large institutional settings – prisons and oddly enough, AIDS hospices in the late 1980s and early 1990s and became a problem that still plagues medicine.

As we face a global fiscal crisis, we would do well to remember the MDR-TB story.  What has happened with the HIV/AIDS epidemic has been nothing short of miraculous to those of us who sat in Berlin on that hot July day in 1993.  The gains of so many years matter more than dollars.  A fiscal challenge cannot result in public health complacence this time – the costs in the long run would be too great and too deadly and too, too tragic.   What we cannot afford are more broken hearts stitching together quilted panels.