By Gwen Darien
Not Yet, Not Now
By Gwen Darien
I’ve been trying to remember the first time I met Patty Delaney. In my memories, back to the start of my work in patient advocacy nearly a dozen years ago, Patty was always there—and always at the forefront of efforts to help those diagnosed with cancer. She was committed to ensuring equitable care, and to making certain that patients were involved in the development of clinical trials and had access to them.
Patty, who died on June 2 of acute myelogenous leukemia, a late effect of stage IV Hodgkin lymphoma, was the associate director of the Cancer Liaison Program at the U.S. Food and Drug Administration (FDA). According to an obituary in the Washington Post, during a 20-year tenure, Patty developed the FDA’s first program to educate the public about cancer drugs in development, so that the views of cancer survivors could be included in the process. She gave speeches, conducted workshops, wrote articles and produced brochures that helped patients and their families decode the language of cancer research. She also trained FDA staff to be more clear and direct in their communications with patients and families. In an article for patients on the FDA website, Patty once wrote, “I resolved that if I was lucky enough to be cured [of lymphoma], I would spend my time educating anyone who would listen about cancer clinical trials.”
I remember one of the many times I heard Patty speak. We were both participants in a panel discussion on clinical trials. Convinced of the importance of clinical trials, persuasive about the need for patient participation in them, and clear-eyed about the risks and benefits, Patty used her own experience as the framework for her talk. After her diagnosis with Hodgkin’s more than 20 years ago, she was treated in a clinical trial at the National Cancer Institute. Characteristic of Patty, even as she wove her own story into her presentation, she avoided making it a platform to talk about herself. Instead, her discussion focused on helping other patients, survivors and family members understand clinical trials.
With Patty’s death, at age 65, we have all lost a forceful advocate for patients. And her passing has also renewed a fear for many long-term cancer survivors. We can’t help but reflect on Patty’s diagnosis of leukemia, a life-taking late effect of her Hodgkin’s treatment two decades earlier. “Am I OK?” is the question that hovers over us. As Sue Rochman writes in the feature “Preparing for the Road Ahead” (read the article), “Perhaps one of the most difficult and serious issues a person who has survived cancer might face is the development of a second cancer. Studies indicate that, overall, cancer survivors have a 14 percent higher risk of developing a new cancer.”
Coping with an initial cancer diagnosis, Rochman writes, many survivors seem to have faced death with the attitude: “Not yet. Not now.” Patty overcame what must have felt like the impossible. Writing about her diagnosis with advanced Hodgkin’s, she once confided, “I had never met anyone who had survived with that much tumor involvement.” But Patty, too, said, “Not yet. Not now.” Surviving her cancer, she spent the next 20 years committed to ensuring that others would have the same opportunity as she did to survive their diagnosis.
Patty Delaney was an incredible advocate. We dedicate this issue of CR to her memory.