How to Mend a Sick System

In November 1998, I was diagnosed with a disease I had never heard of: multiple myeloma, a blood cancer that affects more than 50,000 Americans. When I asked my doctor what the prognosis was, I was told that the average life expectancy was three to five years. Talk about being hit over the head with your own mortality.

I decided not to tell anyone about my illness except for my immediate family and a few close friends. So to keep the news of my illness from getting out, I would go to the hospital afterhours for treatment to avoid having people see me. At the public level, I didn't say or do anything.

But my eldest daughter, Donna, did. She became involved with the Multiple Myeloma Research Foundation, and, as a producer for the "Today" show, she pressed to give the disease national exposure. Ann Curry liked the idea and decided to take on the issue (she continues to be involved). No one asked Donna why she was interested in the disease, and she never volunteered the reason. I remained silent. In June 2001, Donna told me that the foundation, which is in the forefront of raising money for research, was having trouble getting hearings before a Senate Appropriations subcommittee. Was there anything I could do? she asked. By that time, I knew the importance of raising public awareness: new therapies had the potential to render this cancer a chronic—rather than fatal—illness. But more research money was needed. I told her to call Sen. Arlen Specter's office and tell his staff that if he'd have the hearing, I would testify. "Are you sure you want to do this?" she asked. I wasn't, but I knew there was no turning back. I immediately got a call from the senator, himself a cancer survivor, and, partisan politics aside, I was invited up to the Hill to testify. I've been talking openly about my disease ever since.

I routinely get calls from multiple-myeloma patients around the country. One conversation in particular sticks out: it was from a retired teacher in Montana who explained that he was feeling terribly fatigued. When I asked him about his hemoglobin levels (you get to know about this stuff when you have a blood cancer), they were startlingly low. "Oh, my God, they're not giving you Procrit or Aranesp or one of the other anemia medicines?" I asked. "No. I can't afford it. It costs $800 a shot," he said. He explained that he'd had to devise a cheaper alternative to manage the anemia. "I wait until my hemoglobin gets down to seven [that's really low] and then I go to the hospital and get a transfusion, which only costs $50," he said.

Is that what this country should be doing to its people? And yet, it happens all the time. A woman I've become acquainted with at the Amtrak counter in New York has a friend with multiple myeloma. He's not doing well and has just gone to a hospice. The reason? He can't afford the $9,000 a month it would cost him for the medication that could save his life.

Living with this disease, I've seen firsthand just how broken our nation's health-care system is. People who have insurance and money get the treatment they need to live, and those who don't—well, it's a crapshoot. Like most serious diseases, multiple myeloma isn't cheap to treat. I have cycled through several drugs and chemotherapies, and I've had a stem-cell transplant. I now get weekly targeted chemotherapy infusions that cost more than $1,000 each. I couldn't tell you the price of my treatment since my diagnosis, but it hasn't been an issue because I have insurance. When the insurance doesn't cover it, I write a check.