Chasing A Cure

Sometimes the unexpected thing is the most defining; the most cataclysmic turn of events shows you who you are. You are 21 years old and learn you are HIV positive at a time when there is no cure and no treatment for AIDS. Or, you stand beside your mother, who is debilitated by alzheimer’s, looking into a mirror together and she asks, “Who are you?” You hear the call. Do you rise to meet it? Do you flee or fight?

This is the story of two fighters: Princess Yasmin Aga Khan ’73 and Spencer Cox ’90, Bennington alumni studying here at different times, coming from different backgrounds, and working in very different contexts. But both made the audacious choice to jump into the fray of an urgent but little understood health crisis—alzheimer’s disease and AIDS, respectively—with no formal credentials besides their Bennington education and their own determination to chase a cure.

Spencer Cox arrived at Bennington from atlanta, Georgia in 1986 to study drama and literature. In 1989, instead of returning for his senior year, he moved to Manhattan to become involved with the AIDS Coalition to Unleash Power (ACT UP), the direct-action advocacy group whose mission is to end the disease through research, treatment, and policy. He also learned that he was HIV positive.

When ACT UP demonstrated at St. Vincent’s Hospital, St. Patrick’s Cathedral, and the International Conference on AIDS, among other places, Cox was front and center. When they shut down the FDA for a day and stormed the NIH, Cox was there. But as powerful as those events were, Cox’s lasting impact began in 1992 when he was among a small group that formed the Treatment action Group (TaG), a think-tank-like organization that splintered off from ACT UP to focus tightly on accelerating AIDS treatment research. “That was the secret to Spencer,” says playwright and LGBT- rights activist Larry Kramer, “he was doing all these things on his own. ACT UP was a lot like that—everyone was doing things on their own, but very few were as startlingly original and productive as young Spencer.”

At that time, there was no leadership and no strategy around advancing AIDS treatment or cure. So TaG developed a national research agenda that would help get the most effective drugs to the people who most needed them. Cox delved into the work with particular vigor, teaching himself the science of AIDS, the ins and outs of drug trials, and the intricacies of the government approval process. He developed a meticulous commitment to data and espoused an activism driven by science. He was invited to sit at the table by the FDA and the drug companies. “It was a wonder watching him wow the FDA, and in meetings with the biggest names in AIDS research,” says Peter Staley, AIDS activist and TaG co-founder.

“Spencer was not a science guy,” notes his friend and classmate Andrew Lindsay Cohen ’91, “but he had this phenomenally powerful intellect. When he discovered he was HIV positive, he just decided to learn everything he needed to learn so he could do what needed to be done.” and what Cox did in 1995 was to design a clinical drug trial for one of the earliest antiretroviral drugs, protease inhibitors. Not only did his design optimize data collection and streamline the approval process, but it also showed within six months that the trial group taking the drug had half the mortality rate of the group taking the placebo. It was the dreamed-of breakthrough in drug therapies to treat AIDS. “What I learned from that is that miracles are possible. Miracles happen,” said Cox. “I wouldn’t trade that information for anything.” Seven companies now produce protease inhibitors, which are estimated to be saving eight million lives today. “Spencer single-handedly sped up the development and marketing of the protease inhibitors,” says TaG Executive Director Mark Harrington. “He was absolutely brilliant, just off-the-charts brilliant.”

Cox died in December 2012 from AIDS-related causes. Remembered as a stunningly influential activist who slammed the status quo and as an extraordinary citizen-scientist, Cox was a veteran in the fight against AIDS with the prescience to see the long-term psychological impacts of the epidemic on survivors. Last June, the Center for Comprehensive Health at St. Luke’s Roosevelt Hospital in Manhattan, the largest provider of HIV/AIDS care in New York City, formally changed its name to the Spencer Cox Center for Health. 

“In most of the world, things are regimented and divided up in such a way that a playwright does not become a scientist and an actor doesn’t face down the establishment,” remarks Lindsay Cohen, “But Spencer didn’t see it that way.”

Nor does Princess Yasmin Aga Khan, a trained lyric coloratura soprano, who has become one of the most influential advocates for those suffering from alzheimer’s disease and those who care for them. After graduating from Bennington in 1973 with a concentration in music, she moved to New York City to pursue a career as a classical singer. This plan was cut short by the deteriorating condition of her mother, the actress Rita Hayworth, who was experiencing younger-onset alzheimer’s disease—though they did not know it at the time. “It was just so horrible to watch,” says Aga Khan. “She had to know. She had to know her mind was being robbed.”

Aga Khan writes candidly about the confusion and devastation that overtook her mother. “She would move her personal items from her bedroom to other closets around the house, including mine. She would throw all the food out of the cupboards. She would imagine voices outside and thought someone was trying to break into her home,” Aga Khan recalls. “I remember the many times she would call me at college and ask me the same questions over and over again.” alzheimer’s was not well known in the 1970s, and the best that doctors could come up with was that Hayworth was suffering from alcoholic dementia, a misdiagnosis that was not unusual at the time.

Finally, in 1981, the correct diagnosis was made. Having a name, knowing the disease they were up against, gave Aga Khan a toehold from which to take action. “at first I felt a sense of relief—here was a medical explanation,” she says. “But now what?”

That year, she joined the board of directors of the alzheimer’s association, which had been incorporated only the year before. One of her first efforts was to develop the Rita Hayworth Gala, a tribute to her mother and now a major, annual event that has raised more than $61 million to date to support the association’s care, support, and research programs. as honorary vice chair of the association, Aga Khan has also taken the lead in advocating for federal funding for alzheimer’s research. She is a particular champion of researchers early in their careers, arguing that these scientists at the height of their creativity might offer the best hope of finding a cure.

Although her mother passed away in 1987, aga Khan continues her work at a rigorous pace. “I do not waste time. Time is very important,” she says. “I saw how fast it went for my mother.” In addition to her work with the alzheimer’s association, Aga Khan serves as president of alzheimer’s Disease International, which works globally toward policy change from governments and the World Health Organization.

“It was not surprising to me that she would want to get to the bottom of her mother’s illness, understand as much as was known about it at the time, and provide her mother with the best quality of life possible,” says Alan Kornberg ’74, chairman of Bennington’s board of trustees as well as Aga Khan’s classmate and friend, “but she went so much farther. By applying her talents on a much larger scale, Yasmin became a key player.” Harry Johns, president and chief executive officer of the alzheimer’s association concurs: “Many of our recent milestones—the creation of a National alzheimer’s Plan, the establishment of diagnostic criteria, and the willingness of well-known people with the disease to stand up and speak candidly about it—have been made possible because of Princess Yasmin’s early leadership and continued inspiration.”

At the heart of what Aga Khan has accomplished is something essential: With her mother, she helped to give a face to alzheimer’s disease. And that has helped to de-stigmatize a long misunderstood ailment and to draw support not only for those who suffer from it but also for those who care for them. By raising the disease’s profile—which has meant increased awareness, research, and philanthropic support—Aga Khan found a way to root it in what is deeply human. “I tried to understand myself and my mother’s condition,” she says, “That’s how I found the strength to go on.”

Spencer Cox and Princess Yasmin Aga Khan were and are self-taught advocates and self-made activists, whose tenacity changed lives numbering in the millions. “You keep evolving and you keep progressing,” Spencer Cox said in his final interview. “You make your life as meaningful as you can make it.”