The cost of orphan drugs, and some coping strategies

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Summary: Revealing prices is one of our missions over here at clearhealthcosts.com. And skyrocketing drug prices are one of the reasons our national health-care tab is so high.


We’ve written about how to cope with the high cost of those drugs, in posts like this one and this one, and on this page of prescription-buying resources.

Those who are the most in need of these drugs can find that their medications are out of reach, which has caused even doctors to reject the drug-pricing strategies of the big drug companies. When we saw the chart of prices collected by a Sloan-Kettering cancer specialist, Dr. Peter Bach, we thought we couldn’t be more surprised than we were to find that some cancer drugs cost more than $22,000 a month.

But! We are actually surprised — there are even more expensive drugs. Today we found an amazing Seattle Times investigation about “orphan drugs” that has a remarkable chart. Here’s an excerpt:

“Thirty years ago, Congress passed the Orphan Drug Act as a way to lure pharmaceutical companies to develop drugs for rare diseases that had been “orphaned” — abandoned or ignored because they were unprofitable. The hope was that drugmakers would break even or post modest profits,” Michael J. Berens and Ken Armstrong write.

“The act paid off, with hundreds of new drugs. But over the years, its good intentions have been subverted by the pharmaceutical industry, which has increasingly found ways to exploit this once-obscure health-care niche, transforming it into a multibillion-dollar enterprise.

“The law gave drugmakers financial incentives: market exclusivity for seven years, tax breaks and abbreviated testing. The freedom from competition — coupled with the ability of drugmakers to price drugs however they want — has propelled the treating of rare diseases into the fastest-growing sector of America’s prescription-drug system. …

“Drugs for rare diseases commonly begin in the six figures for a year of treatment. This year, one reached $440,000.” The chart is from the article published by The Times.

The prices of orphan drugs.
The prices of orphan drugs.