Ensuring Access to Clinical Trials Act of 2015

Floor Speech

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  I will just add, Nick, that I know you have spent some 25 years here on the Hill, 17 with our committee. Though I benefited from your good counsel before becoming the ranking Democrat on the Human Resources Subcommittee, I particularly appreciated your good counsel during the last 3 years, whether it was working on child abuse and our successful work with former Chair Dave Camp and getting a national commission or dealing with problems of the unemployed.

   Just overall, the jurisdiction of our subcommittee is about children, children in need. Whether they are under this SSI program or child abuse or child care, they are children who should be able to rely on the Temporary Assistance for Needy Family program for their needs.

   Nick has been an able advocate for children and someone who did work well, as Chairman Ryan said, with all members of our committee to advance these purposes. We wish him well in his new endeavors, and we thank him for his service.

   Mr. Speaker, if I might talk just a little bit about the Ensuring Access to Clinical Trials Act, it is about getting new treatments quickly into the lives of patients that are suffering from dread diseases across America, reauthorizing existing law.

   Senator Ron Wyden led this effort successfully in the Senate with Senator Hatch. And here, my colleagues, Mr. Marino and Mr. Jim McGovern, co-chairs of the Cystic Fibrosis Caucus, joined with me in the introduction of this legislation in the House.

   The National Organization for Rare Disorders, and over 75 other organizations, has been a strong supporter of this legislation, and I thank them for their work on behalf of the legislation.

   This bill makes permanent a law that is due to expire that will allow for individuals with certain debilitating conditions to exempt a small amount of their income gained from participating in medical trials from Supplemental Security Income, or SSI, and for Medicaid eligibility determination.

   This exemption removes an important barrier to participating in clinical trials. If it is allowed to expire, patients contributing to vital research could face the difficult decision of either dropping out of the trials altogether or losing their benefits.

   If you have ever met with someone with cystic fibrosis or someone in your family has it, you recognize how small the daily challenges that you face are compared to theirs.

   I think of Nicole Flores in Austin, who has two children battling with rare diseases. She explained that patients shouldn't have to worry about losing assistance when they are just working hard to stay alive.

   Over the past several months, I have heard from a number of families affected by rare diseases. These are parents who shared with me how far-reaching the modest relief this bill provides can provide for a number of people.

   One couple recently sent me a picture of their 15-year-old son Mac Rung, who was diagnosed with cystic fibrosis at birth. Every morning and every evening, Mac undergoes chest therapy in order to clear his lungs and to avoid serious damage to help him get through the day. He takes medications with every meal to help him absorb his food and gain weight. He is battling a disease that many Americans have never heard of at an age where he shouldn't have to worry about anything other than school. And because this disease is progressive, they are really working against the clock.

   Because of the approval of two new drugs, they told me that they never have had as much hope for Mac and his future as they do today. And while they are not a family that themselves rely on the bill that we have today before us, as Chairman Ryan indicated, they, and anyone with these rare diseases, stand to benefit if we have widespread participation in clinical trials on the approval of other new promising drugs like the ones that are already helping Mac.

   Financially penalizing vulnerable people for participating in research does nothing to advance that research. The National Institutes of Health--NIH, as we know it--estimates that 25 million Americans are suffering because of rare disease.

   I hope now that today, the House will join the Senate in approving the Ensuring Access to Clinical Trials Act and that we continue this important effort to support patients across the country.

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