30 Years of Living—And Dying, With HIV

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I was working in New York when the first headlines began to appear in newspapers. The New York Times headline was like many that appeared in 1981—RARE CANCER SEEN IN 41 HOMOSEXUALS.

The outstanding medical journalist, Dr. Lawrence Altman wrote, “The cause of the outbreak is unknown, and there is as yet no evidence of contagion. But the doctors who have made the diagnoses, mostly in New York City and the San Francisco Bay area, are alerting other physicians who treat large numbers of homosexual men to the problem in an effort to help identify more cases and to reduce the delay in offering chemotherapy treatment.”

Americans were struggling to cope with a new disease with only incomplete information available, setting off panic and fear. From inside the news business that struggle looked a little different. Our newsrooms were the gatekeepers for the little that was known. How heavily would we report on the condition of Rock Hudson, the closeted movie idol who denied he was being ravaged by AIDS, then conceded he was? Would we allow families mourning their sons, suddenly dead at 24, 25 years old, to explain their deaths as cancer, pneumonia, “natural causes,” and keep AIDS out of the obituary?

As the years passed, the picture began to fill in: a virus, that came to be called the Human Immunodeficiency Virus, caused the disease. The virus was sexually transmitted, but also by sharing needles in intravenous drug use, and eventually found in blood products infecting people who received transfusions during surgery. Before long AIDS was no longer a “gay disease.” It spread like wildfire through the workers hostels near mines and factories in South Africa, spread by prostitutes. Infected workers headed home to rural villages to pass HIV to their wives and unborn children. Abandoned buildings in decaying American cities were rife with needle-sharing, and infected junkies took the disease home from the shooting galleries to their unsuspecting wives.

There were cases like that of Elizabeth Glaser, married to TV star Paul Michael Glaser, who contracted HIV during a hospital stay for childbirth. Glazer passed HIV to her children, to one in utero and to the other through breast milk. She and her daughter were dead in a few years. The case riveted people who thought the new disease would never, could never, touch their lives. Glaser was not a drug user, a prostitute, or a homosexual. She was a wealthy white woman married to a well-known actor. People wondered, who can get it? How? Can I? A 1984 ABC documentary reflected the concerns: it was called “AIDS: What About the Rest of Us?”

This week on Destination Casa Blanca we hosted a conversation on AIDS and the Latino community. Latinos are infected with HIV at a rate higher than the general population. Their disease is detected much later in their disease, in part because the Latino community as a whole is chronically medically underserved. Condom use would protect the uninfected partner in a couple in which one is HIV positive and the other negative. But Latinos often avoid condom use.

Anti-retroviral drugs, or ARVs, have revolutionized AIDS treatment, transforming the disease from a death sentence into a manageable chronic disease. Dr. Anthony Fauci of the National Institutes of Health told me recently that young people haven’t watched people rapidly sicken and die with no treatment, so they aren’t as afraid of risky behavior as they should be. For some, the rationale goes, AIDS is bad, but survivable. But in places without strong state systems for ARV distribution, there are waiting lists for the drugs. Our panel of activists held out a lot of hope for improved access to AIDS drugs after health care reform takes full effect in 2014.

So, where do we stand 30 years in?  ARVs have reduced the passing of the disease from mother to child in the womb in the wealthiest and poorest parts of the world. New research points to suppressed virus in populations where ARVs are widely used, so even infected people will be less likely to pass on the disease.

At the same time, it’s important to remember more than half the people in the world who need ARVs can’t get them yet. Remember that seven thousand people a day are infected with HIV, and more than a fifth of the infected population worldwide has never been tested, and is unaware of its status.

More than 25 million people are dead. More than 30 million are infected. At this point…vulnerable populations can still go either way. Individuals and governments can stop the disease in its tracks. Can enough people do what it takes for as long as it takes?

Watch excerpts of this week’s discussion at www.hitn.tv/dcb and add your own comments and memories of 30 years of AIDS.

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