I am the parent of a child with a rare disease. As a family we try our best to not let run our lives, though it affects us in every way. Our family (and many like us) has lived with the hope that there will someday be a cure for our child while living with the knowledge that his condition is not exactly a priority of the pharmaceutical companies.
Unfortunately, the priority is not always in helping the child. It’s all about dollars. Treatments for rare diseases are simply less profitable than treatments for common conditions. A larger percentage of the population equals more people needing treatment, which equals a higher profit margin.
On March 17th, 2011, U.S. Senator Bob Casey (D-PA) introduced the Creating Hope Act of 2011, a bipartisan bill that “would encourage the development of new treatments for rare and neglected diseases that disproportionately affect children.” Although the bill is in the first step in the legislative process, I want to take this time to applaud Senator Casey for his work on the Creating Hope Act and to the bill’s cosponsors for putting aside their party alliances to better the lives of our children. This truly does give us hope.
Also deserving of credit are the bill’s cosponsors, Senators Scott Brown (R-MA), Sherrod Brown (D-OH), Al Franken (D-MN) and Johnny Isakson (R-GA). To read the act in its entirety, go to www.hpm.com/pdf/KER11087_FINAL.PDF or go to Senator Casey’s website by clicking here.
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