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POP:Your father has said that many of his political views have been shaped by personal experience. Taking the cancer journey with you, for instance, helped inspire him to spearhead the Family and Medical Leave Act. What are some of the political issues facing cancer patients today?
Kennedy: I encourage people to talk about their experiences and to get involved around policy issues that surround cancer, such as the proposed patients' bill of rights, which would provide appeal rights if, for example, someone's health maintenance organization did not want to pay for an experimental treatment. Every year, there are people in Washington who advocate taking money from the National Cancer Institute because they don't think the government should be sponsoring research. Privacy in medical records and protection of genetic information — these are huge issues for cancer patients.
This past fall the U.S. Supreme Court heard a case, Garrett vs. University of Alabama, involving a nurse at the university who was diagnosed with breast cancer, had a lumpectomy, and was supposedly discharged from her job and told that "we don't want sick people taking care of our patients." She claimed discrimination under the Americans with Disabilities Act.
These things happen. So I try to gently remind people — without being overly political — that it's important to become more informed. Because even if you're cured, you still have a medical history that can affect your employment, your health insurance, and your life insurance.
"I think having cancer sensitized me to the experience of people with disabilities and led me to become a civil-rights attorney."
— Ted Kennedy Jr.
POP: Do you handle cases involving cancer patients? Is cancer considered a disability under the law?
Kennedy: That depends on whether the cancer interferes with a major life activity like walking or breathing. The Americans with Disabilities Act (ADA) also protects people who are regarded as having a disability. A lot of cancer patients have used that prong of the ADA, claiming that, although their cancer did not disable them mentally or physically, their employer treated them as if it did.
About half of my practice is health law, and the rest is disability law. I deal primarily with public accommodations cases; that is, situations where people are denied access to a public place, such as a deaf person who needs a sign-language interpreter to see a doctor.
POP: Dr. Frei recalls the remarkable closeness of you and your father during your treatment. What did it mean to have him by your side?
Kennedy: As a parent now, I can understand how having a child diagnosed with a life-threatening disease can be traumatic. It created a bond between us that has lasted to this day. He was willing to put everything aside and care for me; he literally held my head and the basin while I vomited. That's what parents are for, really, no matter who you are. And it wasn't just for me; I've seen him go out of his way for so many members of our family.
He also worked hard to research all my treatment options. This was before the days of the Internet, when you can go online and search for different clinical trials. Thankfully, now you don't have to be Senator Kennedy to be able to access a lot of this information. People today can use the World Wide Web to make decisions more quickly, find the best physicians, learn the pros and cons of treatment options, and be more involved in their care.
POP: Shortly after you completed your trial, scientists found ways to treat your kind of cancer without amputation. What's your perception of the progress that has been made in tackling cancer, including yours?
Kennedy: We've made huge strides. For example, in the early 1960s, most children with acute lymphocytic leukemia died; now, 80 percent of them live [at least five more years]. We can detect cancer earlier, which helps with outcomes, and there are many new treatments being researched. We've got the best technology and brains, and I'm very encouraged.
But, as I said earlier, it takes the public to support [legislators] who are willing to continue federal funding for these programs — and to push for change. For example, not that long ago, little research was done on women's cancers, such as ovarian and breast cancer. The breast cancer survivors in this country mobilized in an unbelievable way, and they were able, with good old-fashioned political influence, to make a huge difference in promoting research and treatment options. The same is true for prostate cancer [which is one of the most common types found in American men, and is fatal for more than 30,000 annually]. Nobody discussed it five or 10 years ago, and now men are talking about it, and I think that's great.
In my case, I don't regret for one minute that the current limb-salvage technology was not available when I had cancer because it's not foolproof. People do end up with their leg, but the mobility of the limb, I would argue, is not nearly as good as an artificial one. I couldn't ski the way I do, for example, if my leg had been spared.
For some, limb salvage is a great option. But people go through Herculean efforts to try to save a leg when, I think in many cases, they would be much better off going for the amputation. It's not the end of the world to lose a leg.
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