Is drugmaker Genzyme getting too pushy with the treatment it manufactures? Dr. Peter Kouides, a hematologist at Rochester General Hospital, had a patient who refused treatment with Genzyme's Cerezyme for Gaucher's disease, a disorder so rare that Genzyme actually knows almost everyone in the country who has it. And because the biotech company knows the market so well, Dr. Kouides says Genzyme reps continually questioned why one of the doctor's patients wasn't taking Cerezyme.
This situation highlights the Catch-22 nature of rare diseases and the orphan drugs that treat them. Cerezyme is the only FDA-approved treatment for Gaucher disease, but the drug is so breathtakingly expensive that many patients have contacted Genzyme for financial assistance with treatment. The drugmaker has a staff of 50 to help patients, and also has set up centers around the country that have specialists with expertise on the disease. These specialists are better equipped than other physicians, but critics fear they're influenced by Genzyme's funding of the centers. Dr. Ari Zimran, a Gaucher disease expert, tells the New York Times that Genzyme has "monopolized the disease itself, not just the medicine."
To get more on this:
- read the New York Times article