As a Social Enterprise Summer Fellow serving for the Joint Economic Committee in Washington, DC. Senator Amy Klobuchar (D-MN) had asked us to investigate the rising costs of prescription drugs treating rare diseases, and we uncovered the marvelous story of Trevor and his mother.
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.
Although the audience at the actual hearing was small, the response to it was overwhelming. On the final day of my internship, the USA Today carried a front-page story on pharmaceutical companies outrageously raising prices on small market drugs, citing statistics provided by the Joint Economic Committee. The Associated Press soon picked up the story, and several major newspapers around the country ran it on their front pages as well. Yet the most rewarding moment came when I was forwarded an Email, originally sent from the CEO of the offending pharmaceutical company to Ms. Foltz. In it, the CEO apologized for his company’s behavior, and vowed to do anything he could to correct their past mistakes. Thankfully today Trevor is a healthy, happy young boy and seizure-free, while Danielle and her family have returned to Tanzania to continue their missionary work.
There are many who criticize the government for being slow and unresponsive to people’s needs. However after having the privilege of working as a federal employee for nine weeks, I saw a government that truly cared and accomplished something tremendous. And I would not have had this opportunity to hold this hearing and meet such wonderful people if it had not been for the Social Enterprise Summer Fellowship, which supplemented my income and allowed me to pursue my dream of public service. There are no doubt many other stories from other fellowship recipients, who thanks to the Social Enterprise Initiative impacted the lives of people around the globe. Like them, I am eternally grateful to everyone who helped make my summer a reality, and will take the memories of the Joint Economic Committee and Danielle Foltz with me always.
