The High Price of a Rare Disease

July 24, 2008— -- The price of drugs that help people cope with extremely rare diseases is crippling families caring for loved ones in dire need of medical attention, several people told members of Congress today.

This morning on Capitol Hill, the Joint Economic Committee heard from people worried that pharmaceutical companies are exploiting those in precarious medical positions. Among them was mother Danielle Foltz from Rhode Island, who struggled to pay for several $30,000 vials of medication to help her young son Trevor, who was suffering from the unusual condition of infantile spasms.

"Trevor was having as many as 20 seizures in a 60-second span up to five times a day," Foltz told lawmakers in prepared testimony.

Foltz's son is no longer suffering from seizures after receiving four treatments with financial assistance from the family's insurance company and employer.

Testimony from Thursday's hearing indicates that the Foltz family is only one of many who must grapple with spiralling drug costs.

"We are talking about drugs that have gone up 100, 500, or 3,000 percent in a matter of months, weeks, or overnight," said committee chairman Sen. Charles Schumer, D-N.Y. "That's way more than inflation, and it far outpaces the increases families are paying for so many of their other household expenses."

In tracking drug prices, the Institute for Pharmaceutical Research in Management and Economics (PRIME) at the University of Minnesota found that the prices of commonly used brand-name drugs increased an average of 7.4 percent from 2006 to 2007. But some not commonly used drugs have seen far steeper price increases in recent years.

Topping the list of price increases between 2000 and 2008, as compiled by PRIME: Ovation Pharmaceuticals' Cosmegen increased 3,437 percent and QOL Medical's Ethamolin jumped 2,013 percent. Cosmegen is used in chemotherapy for some cancer patients and Ethamolin is used to treat unusually enlarged veins around the esophagus.

In the Foltz's case, Questcor, the pharmaceutical company that markets Acthar Gel, the seizure drug prescribed to Trevor, decided to raise the price of the medication known as ACTH last year. According to PRIME's data, the price of the drug increased 1,310 percent.