Spring Break
Mr. Fuszard Goes to Washington
Social Enterprise Summer Fellowship takes HBS student to Capitol Hill
Luke Fuzard (OD), Contributing Writer
Issue date: 2/2/09 Section: News
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After interviewing her and conducting a tremendous amount of research, we held a public hearing on this deceitful practice that eventually became a front-page article for the USA Today.
In 2007, Danielle Foltz and her husband were packing their luggage in anticipation of returning to their non-profit ministry in Tanzania, East Africa. Concurrently, they were celebrating the recent birth of their third child, Trevor. Just before the family's departure, Danielle noticed jerky, odd movements that Trevor started making. After a trip to their physician, the family was devastated when they learned those jerky movements were seizures. Trevor was having as many as 100 seizures a day. The doctors soon broke the news that Trevor suffered from the rare and catastrophic disorder called Infantile Spasms. If the seizures were not controlled immediately, Trevor's developing brain would be irreparably damaged.
One can only imagine the distraught feeling that Danielle and her family must have felt when they discovered that the cost to have Trevor cured would be over $150,000. The price of the drug ACTH had recently increased by 8000%. The FDA had not yet approved the use of ACTH for Infantile Spasms, therefore Danielle's insurance would not cover it. Additionally, because only 2,000 children across the United States suffered from Infantile Spasms, no generic alternative existed. Despite the drug's high cost, the manufacturer's website claimed no child would be without care, no matter the family's ability to pay. Danielle frantically called the pharmaceutical company, explaining her desperate situation. Her pleas fell on deaf ears.
I met Danielle this past summer in Washington, DC during my internship on Capitol Hill. I was serving as a Policy Analyst for the Joint Economic Committee, a group of twenty US Senators and Representatives who diagnose the current state of the economy. Senator Amy Klobuchar of Minnesota, a member of the committee, had heard Danielle's story and others like hers from families that had experienced outrageous price increases in life-saving pharmaceuticals. I was tasked to coordinate a hearing, including inviting witnesses such as Danielle Foltz to testify. Paired with a senior Economist, I spent days researching the history of these price increases. Shockingly, this practice was fairly widespread but up until now had gone fairly undetected. I was sure we had stumbled upon something that was sure to make headlines. The day of the hearing, however, I was devastated to see only a handful of visitors show up, and Senator Klobuchar the only JEC member to attend. I felt like I had failed Danielle and her family. Instead, Danielle said she was absolutely elated - she had finally had the opportunity to tell her story.
Viewing Comments 1 - 1 of 1
Kevin
posted 2/03/09 @ 1:36 PM EST
Thank you for investigating the enormous price increase of ACTH. Our daughter was on ACTH in 2006 before the price hike. ACTH did not work for her but we know others that it has. (Continued…)
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