You were diagnosed with chronic lymphocytic leukemia (CLL) in 2005. What was your prognosis? It’s a terminal, incurable, but manageable disease. You live with it; then you die with it. At the time there was also the potential that I could take part in a vaccine study at Oregon Health & Science University. With blood cancer, it’s throughout your entire body, so all you have is chemo to go after it with. That’s why clinical trials are really important to trying to unlock some of the keys for leukemia. Dr. Brian Druker, who’s at OHSU, developed Gleevec, which is a miracle drug [used to treat other forms of leukemia]. So I was excited.
But your insurance company didn’t want to pay for the routine care involved with the trial? A sponsoring corporation usually pays for the drug, but what has to be paid for is standard care costs. That meant getting my blood monitored every three months. My insurance said they’d cover it, but when OHSU contacted them, they said, “We don’t cover clinical trials.” I called my lawyer and he told me to start taping my conversations. I told my insurer, “I have a recorded phone conversation where you said you’d cover it, so I’m gonna go ahead.” But then OHSU decided that not only would they deny me entry into the trial, if I submitted the claims I’d be held financially responsible. I told OHSU, “Bring it on. If I’m going to die, I don’t need my retirement account.”
So during all this back-and-forth with your insurer, your cancer was growing and not being treated? My cancer is slow-growing, so I had time to wait. But with something aggressive like lung cancer or breast cancer, you don’t have two or three weeks.
Are insurers saving money by denying clinical trial claims? The National Cancer Institute has done the analysis. There is absolutely no additional cost to the standard treatment when the patient is in a clinical trial—it’s a cost-neutral situation.
And you’ve been trying to get standard care covered while dealing with your own cancer? Yeah. The thing is, the typical factors for CLL include being a 65-year-old, white, fat person with high cholesterol who’s been exposed to farm chemicals. As you may have noticed, that’s not me. The only factor I had was stress, which only increases when you add insurance problems.
You’ve taken the cause from your living room to the State Legislature. How did you gain such impressive momentum? I don’t think it’s me; I just think the time was right. I called everyone, and I’ve been able to pull together a really effective coalition. Ryan Deckert, a former state senator, is an acquaintance of mine. From there I contacted Senate majority leader Richard Devlin; Dr. Gary Chiodo, an OHSU ethics officer; Dr. Craig Nichols, the head of Providence Cancer Center; a lobbyist for the American Cancer Society. I’m not shy about getting up in front of the State Legislature and saying, “Yeah, this happened to me, and it isn’t a good thing.”
So you’ve got one final push ahead of you. How are you holding up? The good news is if I’m not feeling well and I’m presenting in front of the Legislature, I’ve got an oncologist right next to me, one of the top in the state. If I go down, he’s right there. I travel well.