AIDS @ 25
Personal reflections on the epidemic
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And So We Prepared to Die
by Mary Fisher
I was young then, with a toddler and a preschooler at home. It was 1991. The virus was a final legacy of a marriage already ended. I knew television studios and White House travels—not AIDS clinics, or how to find  the right doctor, or whether there were other women like me.
“The AIDS community” that had grown up was predominantly a community of gay men learning to convert condos into hospices. There had been a spurt of AZT-inspired hope in the ‘80s, but the hope fizzled; AZT helped but it didn’t heal. The infected were, we knew, fighting a losing battle, bailing a sinking ship, holding back a viral tidal wave that would eventually take our lives. And so we prepared to die.
I started journals for my sons so, when I was gone and they could read, they would know I had loved them. I wrote and rewrote wills, worried deeply about guardianships, sought answers no one had. I took on dying as I had learned to take on everything: It was a project. I accepted it, organized it and planned for it. I decided to speak out, as publicly as possible, because I only had a few months or years.
The dying assumed that the “AIDS crisis” would mount, that voices demanding support and care would become louder and more persuasive, that ignorance and stigma would be replaced by reasoned, compassionate policies. If science were to defeat the virus, it would come too late for us. Our job was to speak truth to power, quickly, and prepare to die.
I am not so suicidal as to wish that ARTs (antiretroviral therapies, “the cocktail”) had never come along. But the truth is, I was no more prepared in 1996 for the prospect of a long life than I had been in 1991 for the promise of a short one.
What I’ve learned since ARTs have prolonged our lives is that cultural change is hard. Africa is still poor, Asia still in denial, America has gone to another war. Satellites and the Internet have taught us to think globally during this decade, but millions of dusty orphans wandering the Sub-Saharan move us to no more than a sigh. Headlines have moved on. Celebrities have taken up more glitzy causes. Communities of color, of women, of immigrants lack the resources (knowledge, power, money) the gay community had; these neighborhoods host dying very quietly. Those who cannot access ARTs will die; those of us who have access live in daily guilt for the very act of living.
Had we known we would live, we might have organized a better struggle for justice. We might have looked for gifted youth to become advocates, to collar Senators and protest Presidents. We might have filed lawsuits demanding justice and found journalists who would not let the story die behind the obituaries. But we didn’t know.
We worked on dying, never expecting that Iraq would take billions and the bird flu would grab the headlines, while orphans and AIDS slipped quietly out of our sight.
Mary Fisher was a television producer and an assistant to the President of the United States (George Bush) before she gained international recognition as a leading speaker, author and chronicler of the global AIDS epidemic.
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The gift of life
by Steve Wakefield
Thanks for the gift of life and learning that has been the hallmark of my friendships with men and women living with HIV. At dinner after a TPAN lecture, I once told HIV-positive Dr. Leon McKusick that I was sorry to meet him because he was such a wonderful man. Before the end of the meal, this healer let me know “that loud screaming and yelling you hear inside is grief.” The late Dr. McKusick helped me to understand the wealth of staying in this moment and enjoying the richness of human contact.
So when Jeff [Berry] asked me to speak to “25 years into the epidemic,” my first reaction was gratitude. I wanted to run to the dance floor, shake my tambourine and kick up my heels to the “Unspeakable Joy” of being able to encounter so many who have so much to give.
Solutions to the HIV problem have always required the sound of “People with AIDS, Under Attack: What Do We Do? Act Up! Fight Back!” Continued vigilance may one day help us to see a cure or a vaccine or new weapons against this virus. The table scraps afforded by once-a-day treatments will not be enough to stave off this evolving plague. Collective human feistiness may keep our needs in front of those who can make a difference.
Scientists need resources. Scientific innovation that seeks a cure must be funded while new treatments are developed. We need each other. Current prevention messages and technologies are not delivered in ways that change behaviors despite telecommunications advances.
We need to put the public back in public health. One way would be to recognize humans as sexual beings and help them to incorporate what we know about the science of prevention. We have to make fewer partners and committed relationships sexy to the next generation. Support rational thinking. If gay marriage will help people reduce partners by providing supportive relationships, then only vote for those politicians who will fight for life. We have to help people know their status and make safer choices by protecting themselves and their partners.
We must continue to recognize life’s rich moments, brief acquaintances, and powerful friendships. We need to acknowledge them, revel in them, and celebrate them, basking in their sunshine to make this day more bearable and receiving their power in preparation for tomorrow.
Steve Wakefield, a former executive director of Test Positive Aware Network, is associate director for community education of the HIV Vaccine Trials Network.
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 AIDS has not gone away
by Howard Grossman, M.D.
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. e
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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