Health care reform and cancer

Today's Wall Street Journal features an opinion piece from a writer suffering from two forms of cancer. She makes some excellent points both about the role of the FDA and comparative effectiveness research:

When I was first diagnosed in 2000 I had chemotherapy. It put me in remission, but nearly killed me.

Three years later the lymphoma was back and I faced more chemo. This is so often the pattern of cancer: recurring disease and repeated chemo. In the end patients often die not from the disease, but from the treatments.

I took a different path, seeking a cancer vaccine. One had been developed at Stanford University 12 years earlier that had given 90% of patients very long remissions and cured some entirely. Unlike chemotherapy, there were no severe side effects.

But I couldn’t get the vaccine because the Food and Drug Administration required another trial that would take nine more years. Over-regulation has kept this treatment from patients for 21 years, as some 24,000 lymphoma patients died each year.

My husband and I searched the Internet and found another vaccine being tested at Freiburg University in Germany. That vaccine has helped me avoid chemotherapy for years. My oncologist says he’s never seen another patient do so well with the type of lymphoma I have.

I am still here because my care was managed by doctors—not a government agency. My doctors do what the bureaucracy can’t: They see me as a human being.

Patient-as-person will be a lost concept under the new health-care plan, where treatments will be based not upon individual patient needs, but upon what’s best for everyone. So cancer drugs for seniors might take second place to jungle gyms and farmers’ markets—so-called preventive care—which are covered under both the House and Senate versions of the health bill.

The stimulus package passed earlier this year allocated $1.1 billion for hundreds of “Comparative Effectiveness Research” studies. This project will compare all treatment options for a host of diseases in order to develop a database to guide doctors’ decisions. Research of this sort typically takes years. But the data will likely be hastily drawn conclusions that reflect the view of the government agencies that fund the studies: Cheap therapies are just as good as expensive ones.

Read the whole thing.