When Illness Strikes: How to Get the Best Medical Care

We can now research our illnesses like never before. But whom do you trust, and where do you stop? Two women, one a cancer patient who took charge of her own drug research, the other a scientist who faced her own health crisis, show how they found their way

By Laurence Gonzales
Her main concern was that she’d have to fly to Chicago every few weeks to receive the vaccine for the rest of her life. "I really had to think about that, because that was a big commitment." But she read the consent form, and saw that it promised to keep her on the vaccine "ad infinitum." She decided that her own commitment should match theirs. "I thought, if I want to live, what’s the big deal? I go to Chicago." She was accepted into the program in May 1996. Pollack’s course was set. The intense days and nights of search and research were over. She made changes in her life involving diet and exercise, and felt at last that she had her health back under control. And indeed, it seemed to be for the next seven years. The women in the trial, who were scattered across the country, formed a coalition to keep in touch. For the first time in years, cancer didn’t occupy Pollack’s every waking thought. She returned to her work and family and made regular trips to Chicago for the vaccine. Her health was good.Then Pollack began to hear rumors that the medical school was not really supporting the vaccine. After Springer died in 1998, the school began laying off the staff of Springer’s lab, and by 2003, almost everyone was gone. By the fall, she heard that the program might be cancelled. "I didn’t believe it," she said. "There’d been rumors before." But in February 2004, each patient received a letter from the medical school saying that the trial had been cancelled. After three decades, the late Dr. Springer’s work was over.Now Pollack and her medical consultant Mark Renneker began trying to figure out how she could get the vaccine. "I’ll never know whether or not the vaccine is what’s keeping me alive," she says. "But I just want to keep doing it, because I believe it is." Her doctor found a way to have the vaccine made abroad. But she began thinking about the other women. What would they do? Not all of them would be able to afford to go abroad and have the vaccine made. She also felt that this was one of the few protocols that could fill the vacuum left when women with breast cancer finish their chemotherapy and radiation. She decided at that moment to try to get the vaccine back, not just for herself, not just for her group, but for others, as well.Legal ActionThere are some complex issues tied up in Pollack’s decision, which was not strictly scientific, not strictly rational, but grew out of a blend of rational and emotional motives. Recent neuroscience has shown that so-called "gut feelings" are real elements of our ability to make good decisions. We can take in large amounts of information — too large to remain in consciousness — and use it to reach valid conclusions, all outside the normal process we call reason. Pollack couldn’t prove that the vaccine was effective. But the medical school had promised to provide it indefinitely and, perhaps more important, the vaccine gave those women an answer to the question: What do I do for the rest of my life? In her gut, she knew that she was onto something with the Springer vaccine. She felt that the school officials would listen to her and keep the trials going long enough to let the women find an alternative. Being a TV reporter, she could also envision a group of 50 breast-cancer patients marching with signs in front of the medical school, and thought surely the school wouldn’t want that. When the school remained unresponsive, Pollack found a lawyer in Chicago, Robert Cummins, who was willing to negotiate on behalf of the women. When I spoke to him, Cummins said, "When I first heard the story, it seemed incomprehensible. No reputable medical institution could possibly shut the door on these women."Cummins set up a meeting with school officials; they were very cordial, and gave Pollack the impression that they’d strongly consider her proposal. She left the meeting convinced that she’d get her next dose of the vaccine, which was already overdue, within weeks, since there was an unused supply on the shelf. Then she learned that the school had already notified the FDA that they were closing down the program. It was as if Georg Springer and his vaccine had never existed.

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