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WHAT ARE THE ODDS?
That you will never need drugs to keep your HIV in check // That you will live longer than your doctor’s
first prediction? His second? His third? // That you hold a vital clue to preventing, even curing, AIDS?

The Rare Few

By Charles Slack // Photographs by Gregory Heisler // Winter 2009
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Elite Controllers, HIV, AIDS, immunity, Karen Pancheau, Joseph O’Brien

Solitary figures among legions of AIDS sufferers, “elite controllers,” such as Joseph O’Brien of Atlanta, test positive for HIV but never seem to get sick. Despite not having taken the antiviral drug AZT for more than a decade (and then only briefly), O’Brien remains healthy.

At first Karen Pancheau figured her son Tyler’s nasty rash came from friction on the mats at judo class. But when the rash began dissolving layers of flesh, his father took the teenager for tests, which revealed he had HIV. Karen, too, tested positive for HIV, the virus that causes AIDS, which she’d apparently acquired from a blood transfusion in June 1982 and to which she exposed Tyler during childbirth and breast-feeding. Yet as Tyler slowly progressed to AIDS, Karen remained healthy.

Various drug cocktails kept AIDS from killing Tyler, but they left him constantly fatigued, and on Nov. 11, 2005, the 23-year-old committed suicide. Remarkably, 26 years after receiving HIV-tainted blood, Karen Pancheau has yet to develop AIDS.

She isn’t alone. Bruce Walker, now director of the Partners AIDS Research Center at the Massachusetts General Hospital and director of the Center for AIDS Research at Harvard University, first became aware in 1992 that there were others like Karen Pancheau who seemed somehow protected from AIDS. He learned about the phenomenon from Susan Buchbinder, an epidemiologist in San Francisco who was analyzing blood samples from homosexual men taken years earlier (for the trial of a hepatitis vaccine) to understand how AIDS progresses. She started studying men whose samples showed they had been infected with HIV in the late 1970s; many had already died, but some weren’t even sick. Then, in 1994, Walker met a hemophiliac in Boston named Bob Massie, who had become infected with HIV through a blood transfusion in 1978—three years before AIDS was even identified as a disease. “People keep telling me I’m going to die, and I keep living,” Massie told Walker. Walker immediately began to study his immune system.

A few years later, speaking before several hundred doctors at an AIDS conference in New York City, Walker asked how many had run across similar patients. When at least half the audience raised their hands, Walker realized that people like Massie represented a real opportunity for research. He also understood why these rare individuals—no more than one in every 300 cases, or perhaps 5,000 of the more than 1 million infected Americans—had remained so well hidden: “They weren’t sick. They weren’t coming to the hospital.”

Those protected few came to be called “elite controllers” because their ability to combat the virus puts them in exceptional company among infected individuals. Their existence injects a note of hope into a field of research that has become accustomed to failure and disappointment since HIV was identified in 1981. Early on, drawing on the experiences of medical science with mumps, measles, smallpox and other infectious diseases, researchers confidently predicted a vaccine within five years. That hope faded as one high-profile effort 
after another faltered and the death toll from AIDS mounted.

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HIV: Finding Clues Among the Rare Few

Karen Pancheau

New AIDS research and the study of asymptomatic HIV-positive patients has brought optimism to those looking to cure the disease.

Another Route to a Cure?

One step ahead of elite controllers: people who are immune to HIV infection.

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hed-dossier

1. “Elite HIV Controllers: Myth or Reality?” by Nitin K. Saksena et al., AIDS Reviews, October–December 2007. Despite the skeptical title, researchers cite elite controllers as a rare bright hope in the fight against AIDS.

2. “Human Immunodeficiency Virus Controllers: Mechanisms of Durable Virus Control in the Absence of Antiretroviral Therapy,” by Steven G. Deeks and Bruce D. Walker, Immunity, September 2007. A comprehensive analysis by two leading researchers of the various means by which elite controllers may be keeping AIDS at bay.

3.“No Vaccine Against HIV Yet—Are We Not Perfectly Equipped?” by Mahender Singh, Virology Journal, Aug. 29, 2006. A good discussion of why HIV and AIDS have thwarted so many attempts to defeat them.

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