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
Going to Court In the summer of 2004, Pollack and Cummins sued the Chicago Medical School (CMS) on behalf of the 50 women in the Springer trial for the right to take over the research and whatever remained of the roughly $18 million Springer had left to support the program. At the time of the suit, Patrick Coffey, a lawyer for CMS, reiterated what numerous doctors and scientists had said of the trials. He told a news service, "There was an absence of information that allowed us to say this was valid science and that it was providing a benefit to those human beings involved." In court that fall, Michael Schrift, a psychiatrist and head of the school’s review board, was pressed repeatedly by Cummins about why CMS had shut the research down. Schrift testified that the school had acted properly in canceling the program, and that it did so because the vaccine had not proven effective, nor could its safety be adequately determined. The women, he suggested, had placed false hope in the vaccine, believing "it was treatment, where in fact it was research."Wayne Jonas, MD, director of the Samueli Institute, a nonprofit medical research organization, had his own wife enrolled in the Springer trial, and testified for the plaintiffs. "The science is not perfect, there’s no question about it," he says now. "But this is the longest human breast-cancer vaccine trial in the country, and probably in the world." And, according to Jonas, "An independent comparison [found] the overall survival rate for women on the vaccine was 30 percent better than for those who were not." The case settled quickly. "The University believes that the prior decision of its Institutional Review Board regarding the T/tn [Springer] vaccine study was correct," said Robert Vogt, an attorney for the school, in a press release issued at the time. But the school agreed to pay the cost of pursuing FDA approval at another institution, and to turn over all research materials, including the vaccine, to the women, in addition to an undisclosed amount of money from Springer’s bequest. (School officials declined to comment directly for this article; their press representatives referred instead to the aforementioned press release.) The women and their lawyer, Cummins, are now seeking a new home for the Springer vaccine trials. But Pollack’s long fight left her feeling as if she had so much more she could do for others. "It sounds really hokey," she told me, "but I felt like I’ve been put in this position where I can do something that could make a difference." She decided to start her own foundation, with the support of Springer’s daughter Julia Tolkan, who watched her mother die of breast cancer, to continue and broaden his work and support other research. The idea is in its early stages and she isn’t sure what it will encompass, but she wants to give women a stronghold from which to defend the right to control their own healthcare. "I’m not a religious person," Pollack told me. "I’m not even particularly spiritual. But I feel like it was my turn to do something." It was a turning point in her survival story. In her first year after diagnosis, she had to stay in the moment, focused on her physical survival. In her fight to get the vaccine trials continued, she was battling for her group. That victory was behind her. Now she looked forward to a new way to struggle meaningfully for something larger than herself. Because the struggle itself is important. Too much stress can hurt you, but too little can, as well. Even animals know this. The fruit gained through struggle is always the sweetest. In laboratory experiments, they’ll choose food they have to work for over what’s freely given. The last time I spoke with Darryle Pollack was at her art studio in Carmel. When she was finishing her chemotherapy, facing the unknown, she began painting ceramics in a small shop at a mall near her home. "In school I was always a whiz at history and English, but when it came to art, I was absolutely remedial," she explained. But somehow the clay and glazes just spoke to her as she sat at a workbench with the sunlight streaming in through a big picture window. As she worked over the years, she inevitably broke a few pieces. She saved the fragments and started making mosaics. She liked doing that so much that she began painting ceramic tiles specifically to break them.

What’s your reaction?

Comments

Post new comment

Click to add a comment