It’s not easy making the switch from “patient” to “experimental subject.” Mary Elizabeth Williams would know – after being told the devastating news that her melanoma had returned in a more malignant form, she was given the opportunity to try an experimental immunotherapy treatment that might save her life.
The catch? Williams would have to be part of a research study. To receive treatment, she needed to give blood and tissue samples and forgo other medical treatments (even acupuncture, flu shots or surgical removal of a tumor). In an article for Salon.com, Williams describes her experiences qualifying for the trial:
But first, before beginning the trial, I had to submit to a battery of grueling tests and interviews, both to “establish a baseline” and to assure that I qualified as a subject. It was kind of like going for a high-level job, except that I wasn’t sure how to ace an MRI and CT scan.
I realized my life was about to get intense when I was handed a 27-page informed consent form alerting me of my “responsibilities.” I was not to get a flu shot. I “must not” get pregnant. As a mother in her mid-40s, that one wasn’t a hard sell, but I wondered how that imperative is going over for my fellow subjects. I had to agree that I understand I would run the risk of a battery of side effects from fever, rash and fatigue to “rare but serious” conditions ranging from heart attacks to meningitis.
The world Williams describes is surreal – one where her doctors want her to get well, certainly, but where her improvement is also highly prized as experimental data. While most doctors have treated her with dignity and respect, in an interview with Talk of the Nation, she describes one who sounds like every patient’s worst nightmare:
As a patient, I had one doctor very early in the treatment who really just kind of treated me like a lab rat, who talked around me, who would bring in some of the fellows from the project and just talk about the tumor while I was in the room as if I was the tumor. But most of the other doctors in the trial have not been that way and have been really wonderful and supportive.
So far, the treatment seems to be working – Williams wrote a recent follow-up piece describing her dramatic improvement while participating in the trial. While the early results of the research are promising, and, doubtless, the complete disappearance of two tumors in a stage-4 cancer patient is nothing short of miraculous, there’s a downside to participating in the study. Williams notes that she will need follow up treatments for two years, and that the study will continue to monitor her for the rest of her life.
Clinical trials can be a godsend for patients who are out of other options, as William’s experience proves. But some of the caller comments from her Talk of the Nation interview reveal some of the common fears patients have about participating. One caller, Bob, describes his fears that his wife will be treated as just another data point by doctors who don’t care about helping her get well. Another caller, Martha, describes her decision to skip a possible clinical trial in order to receive chemotherapy immediately.
In the end, Williams concedes that clinical trials aren’t for everyone. She dismisses the idea that cancer patients have an obligation to participate in research simply to advance scientific and medical knowledge. In the end, she says, “Your first obligation is to yourself, obviously, yourself and your family. Don’t worry about the rest of us. Take care of yourself.”
Photo credit: audrey_sel