Improving Access To Clinical Trials Act Of 2009

Floor Speech

Improving Access To Clinical Trials Act Of 2009

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* Mr. MARKEY of Massachusetts. Mr. Speaker, many years ago, I had the good fortune to meet Joey O'Donnell. Joey was the son of my close friend from Malden, Massachusetts, Joe O'Donnell. Joey was a brave and resilient child despite suffering from Cystic Fibrosis, CF, a cruel disorder that robs the body of the ability to breathe normally and leads to other debilitating health problems. As a result, CF typically cuts lives tragically short.

* In 1986, Joey passed away when he was only 12-years-old. Because of Joey and the tireless work of his father Joe and mother Kathy, who encouraged me to intensify Government efforts to combat CF, I decided to found the Bi-Partisan Cystic Fibrosis Caucus in Congress. Our goal has been to raise awareness and build momentum towards a cure for CF, ALS, Parkinson's, Huntington's and other rare disorders.

* I was pleased to partner with my colleague, Representative Cliff Stearns (R-FL), in passing the Improving Access to Clinical Trials Act and sending it to the White House to be signed into law. This bill will open up participation in clinical trials for diseases like CF to low-income and other patients. The bill excludes from the income caps set for the Supplemental Security Income and Medicaid programs the compensation that these patients receive for their participation in clinical trials for rare diseases The legislation will ensure that this modest compensation will not affect eligibility for these programs.

* Patients will no longer have to choose between their health benefits and the promise of a clinical trial. If we want to increase the chances of finding cures to diseases like Cystic Fibrosis, we also need to increase participation in these trials. The Improving Access to Clinical Trials Act gives low-income individuals a higher probability to help advance medical science, and helps save lives in the process, hopefully including their own.

* The bill we passed yesterday and the law that President Obama will enact with his signature is really ``Joey O'Donnell's Law''. He inspired it, and his name will forever be associated with it. Joey died before his time, but his impact will be timeless. I salute my friend Joe O'Donnell and his wife Kathy and send my best wishes to the entire O'Donnell family. I also want to recognize my friend Bob Coughlin, President and CEO of the Massachusetts Biotechnology Council, for his tireless work to help find cures to CF and other rare disorders. This new law will offer hope to families around the country and bring us closer to the day when we consign these devastating diseases to the history books.

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