Voices on AIDS

I’m glad to see how much coverage the HIV/AIDS epidemic has been getting this week, thanks to its 25th anniversary. A few more op/eds and articles for you to peruse:

An Epidemic of Caring

A beautiful, heart-wrenching op/ed by a doctor who has been treating AIDS patients for the past 25 years.

My patients taught me about courage, about bravery, about organizing for a cause, about dying for one. They left me with an abiding conviction that has not faded, the armor to shrug off the slings and arrows of pettiness and malice that we all encounter: there are bigger things at stake in life than just your happiness or mine.

We became zealots for the cause of our patients, even if zeal was all we had to give. We had no cure to offer, and so we began to leave the thresholds of our medical-industrial complexes and visit our patients in their homes, at their deathbeds. Paradoxically we discovered that our presence, our promise not to desert our patients, our continued care brought about a sort of healing, by which I mean helping the patients come to terms with their illness, with their deaths, and meanwhile diminishing for them the sense of spiritual violation that any serious disease brings, none more than this one.

I went at great personal cost to the international AIDS conferences; I watched with awe as politics eclipsed science and as gay activists rattled the cages of stodgy government entities like the Food and Drug Administration, and got results. I took my young sons to so many memorial services, for Jim, James and Jose — men who were my patients, but who were also volunteers in our clinics, who were fellow soldiers in this battle and who were my dearest friends.

These men all died, and though they never lost hope, I did, as one drug after another failed to live up to its promise. I became a therapeutic nihilist. I did not think I would live to see the day when we had something that could really control the disease and extend life. When that moment came in America, with the drug cocktails in the mid-90′s, I cried for all the patients I had known in four cities who would never have the Lazarus-like resurrections I could now bring about.

He watched as those same tactics — the refusing to back down, the strong activism — were carried abroad.

I refuse to dwell on the numbers, the dire predictions and the pessimism about a vaccine, though I am sure there is some truth to all of that. On my desk I keep a picture sent to me by a friend, Rick Hodes, a doctor who has spent his professional years in Ethiopia. It shows a beautiful, chubby-cheeked Ethiopian child, wearing colorful local dress, and holding in his hand a photograph of a scrawny skeleton in rags. The photograph is of his former self, taken a few months before he got the H.I.V. medications that Rick scrounged money to buy. Victories are now to be won in that fashion, one child at a time.

Families Forged by Illness: How the HIV/AIDS Epidemic Started the Gay Marriage Movement

Marriage, after all, hardly seemed relevant. The master narrative for gay life was: come out, leave home, gorge at the banquet of sexual liberation. Gay men celebrated their image as sexual rebels; straight America was happy to consign them to that role. After 1981, the master narrative changed from ubiquitous sex to ubiquitous death. Death became, as the writer Andrew Sullivan noted at the height of the epidemic, not just an event in gay America but “an environment.” For the stricken there were lesions, chills, wasting, death; for friends and lovers, there was grief compounded by despair.

But there was also an epidemic of care giving. Lovers, friends and AIDS “buddies” were spooning food, emptying bedpans, holding wracked bodies through the night. They were assuming the burdens of marriage at its hardest. They were also showing that no relative, government program or charity is as dependable or consoling as a dedicated partner.

Yet gay partners were strangers to each other in the law’s eyes. They were ineligible for spousal health insurance that they desperately needed; they were often barred from hospital rooms, locked out of homes they had shared for years, even shut out of the country if they were foreign citizens. Their love went unmentioned at funerals; their bequests were challenged and ignored. Heterosexual couples solved all those problems with a $30 marriage license. Gay couples couldn’t solve them at any price.

The major issue I have with this editorial is that homosexuality is confined to men — the fact is that lesbians are one of the lowest risk groups for contracting HIV, and they were not dying en masse. I also take issue with his generalizations about the “gay community.” Nonetheless, I think the author makes a valid point when he says that the AIDS epidemic shaped the same-sex marriage debate. AIDS also encouraged the gay community to be more vocal activists. Groups like ACT UP took on the U.S. government and forced them to recognize the epidemic; had it not been for them, who knows what the state of HIV/AIDS would be today. I think it’s fairly safe to say that we would all be worse off. That activism put gay men in the forefront of politics in a way that hadn’t been seen before. Even the sexual revolution was focused more on straight people; gay men and lesbians remained largely underground communities, occassionally getting attention because of events like the Stonewall riots, but largely living under the radar. Until AIDS.

Initially, the fact that HIV seemed to be relegated to gay communities gave politicians and even medical professionals an excuse to ignore it. But 25 years later, it’s part of our national consciousness, largely due to the work of gay rights and progressive activists. And while gay men had to start at the very bottom when securing basic rights — by raising their voices and demanding the right not to die of an infectious disease — they were successful enough that now other rights — like the right to get married and secure the same privileges that straight couples are offered — can follow.

Deadly Quackery

If there’s one thing that ideologically-driven nutbags are good at, it’s denial (see Global Warming, the War in Iraq, Evolution, Abstinence-Only Eduction, etc). But now they’ve added a new one to the list: AIDS.

Because lately, a bizarre theory has gained ground — one that claims that H.I.V. is harmless, and that the antiretroviral drugs that curb the growth of the virus cause rather than treat AIDS. Such talk sounds to most of us like quackery, but the theory has emerged as a genuine menace to public health in the United States and, particularly, in South Africa.

The theory, which we call AIDS denialism, has gained such currency with President Thabo Mbeki of South Africa that his administration is reluctant to expand access to antiretroviral drugs. Despite generous allocations from the country’s Treasury and substantial assistance from foreign donors, only a quarter of those needing antiretrovirals receive them. This response is poor by the standards of middle-income countries, but it is especially troublesome in South Africa, which has more H.I.V.-positive people than any other country.

American AIDS denialists are partly to blame for South Africa’s backsliding AIDS policy. Manto Tshabalala-Msimang, the health minister, has described antiretrovirals as poisons. She is supported in these views by Roberto Giraldo, a New York hospital technologist who says AIDS is caused by deficiencies in the diet, and who served on President Mbeki’s AIDS advisory panel in 2000. The minister promotes nutritional alternatives like lemons, garlic and olive oil to treat H.I.V. infection. Several prominent South Africans have died of AIDS after opting to change their diets instead of taking antiretrovirals.

Another American AIDS denialist, David Rasnick, a regular letter-writer to South African newspapers, absurdly claims that H.I.V. cannot be transmitted between heterosexuals. Mr. Rasnick now works in South Africa for a multinational vitamin company, the Rath Foundation, conducting clinical trials in which AIDS patients are encouraged to take multivitamins instead of antiretrovirals.

I hope that the devil has a special place waiting in Hell for these people.

Read all three op/eds in full. They’re interesting.