AIDS Has Not Gone Away
AIDS @ 25: Personal Reflections on the Epidemic
Death was a constant companion in 1995. For those fighting the battle against HIV and AIDS things were very grim. The worst day for me was in October 1995. I had just finished sitting with one of my favorite patients as he took his last breaths. My beeper went off and another of my patients was coding upstairs. He didn't make it. In the middle of that, the beeper went off again -- it was one of my best friends being admitted to the ER with shortness of breath and sudden onset of dementia. He was dead before the night was out.
The outlook for the future was equally depressing. 1995 was the year I was involved in the test case on end-of-life choices that would later go to the Supreme Court. I remember talking with John, one of the patients I had been seeing since the mid-80s. John was a real survivor -- CMV retinitis and colitis, Mycobacterium avium disease, cryptosporidiosis, multiple bouts of wasting -- but he never lost his positive attitude or his willingness to try new therapies. Then he was diagnosed with lymphoma and it seemed to be the straw that broke the camel's back. John was not the patient who joined me in the court case, but he and I talked about it a lot, about the decision to end one's life when disease became terminal. He was thinking about it.
The impact highly active antiretroviral therapy -- HAART -- has had on People Living with AIDS (PWAs) was often described as the "Lazarus effect." People like my patient John, who thought his life was coming to an end, were suddenly getting better. With the advent of HAART John's chemotherapy had a chance to actually work. Within a few months he was working as an artist again, and in the fall of 1997 decided to take up scuba diving!
Everyone felt recharged. The effect for providers was so profound that it is hard even now to judge. In my practice alone in 1995 there were 37 deaths. In 1996 it dropped to 10, in 1997 to 4 and in 1998 to zero.
We still face so many challenges in HIV. As the epidemic spreads among the poorest in the U.S., there are still far too many people who do not know their HIV status and too few people who are receiving high-quality HIV care. The Centers for Disease Control (CDC) estimates that 25 percent of the over 1 million people most likely living with HIV in the U.S. are unaware of their status. That would mean that 216,000 Americans are eligible for HIV care but are not receiving it. Too many individuals in 2006 are being diagnosed with AIDS in the Emergency Room when they come in with an opportunistic infection and late-stage disease. This is particularly true in communities of color, and not just in the U.S. -- the same disproportionate impact of HIV and disenfranchisement from quality care is being seen in populations of African descent in Canada and in Britain as in the U.S.
Too many people are still becoming infected with HIV. For years now, the number of new infections is hypothesized to be near 40,000 annually. People working in disease prevention have done a remarkable job in decreasing transmission from the wildfire spread of the 1980s (see the marked decline in new infections in San Francisco), but we seem to have hit a wall. Part of this is due to the fact that the U.S. government has, for years now, failed to take a science-based, non-judgmental and completely clear approach to sexual education and drug education. The amazingly dedicated public health professionals in the federal government have had their hands tied by grandstanding congress members, politicking presidents and religious bigots. Other countries, which have created mass campaigns of unflinchingly clear and graphic education with simple messages, have seen sharp decreases in new infections while the U.S. has not.
We've still lost a lot of patients since 1995. My patient John? He died in 2004. I still mourn their loss, but I cherish the extra time I had to know them. Their deaths must serve as another reminder that, for all our success, AIDS has not gone away.
Howard Grossman is the Executive Director of the American Academy of HIV Medicine, a professional association of 2,100 front-line HIV providers, based in Washington, D.C. Dr. Grossman is a board-certified internist, who had a private practice in Manhattan from 1988 to 2005.
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