[Congressional Record Volume 156, Number 133 (Wednesday, September 29, 2010)]
[Extensions of Remarks]
[Page E1830]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]


            IMPROVING ACCESS TO CLINICAL TRIALS ACT OF 2009

                                 ______
                                 

                               speech of

                         HON. EDWARD J. MARKEY

                            of massachusetts

                    in the house of representatives

                      Thursday, September 23, 2010

  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.

                          ____________________