The Seattle Times has published the first installment of an investigation of drug industry profiteering from orphan drugs. It’s called “Pharma’s Windfall: The Mining of Rare Diseases.”
Orphan drugs are pharmaceuticals approved to treat diseases affecting fewer than 200,000 patients in the United States. The federal government gives drug manufacturers multiple incentives to develop them because, historically, they garnered little interest because they weren’t money-makers. The Times series will explore how drug makers have turned orphan drugs into a lucrative profit center.
Although the first article in the series doesn’t mention it, you have probably heard that the drug industry is suing to take away all 340B discounts on orphan drugs from rural and cancer hospitals, claiming that the limited price reductions on orphan drugs now available to these hospitals are causing “severe and irreparable harm.”
Yeah, right.
According to the Times, the Orphan Drug Act’s “good intentions have been subverted by the pharmaceutical industry, which increasingly found ways to exploit this once obscure health-care niche, transforming it into a multi-billion dollar enterprise.”
The tax breaks, regulatory relief, and protection from competition that the law gives manufacturers, coupled with drug makers’ ability in the U.S. to charge what the market will bear, “has propelled the treating of rare diseases into the fastest-growing sector of America’s prescription-drug system,” the newspaper said.
Click here to read the article (which, by the way, describes how SNHPA member Seattle Children’s Hospital paid all the medical expenses not covered by insurance for a 10-year-old girl’s treatment with Avastin for a rare form of brain cancer).