Accelerating Access to Critical Therapies for Als Act
Floor Speech
Mr. Speaker, I rise today in support of H.R. 3537, the Accelerating Access to Critical Therapies for ALS Act.
I am a proud cosponsor of this bill and want to thank Representatives Fortenberry and Quigley for their tireless efforts to move this bill forward. We would not be here today without your hard work and the tremendous advocacy efforts of the ALS community, who have so passionately made the need for this legislation known to Congress.
ALS is a devastating neurodegenerative disease that affects nerve cells in the brain and spinal cord. Many people lose the ability to speak, eat, move, and even breathe. Over 5,000 people are diagnosed with this disease each year, and the average life expectancy is only 2 to 5 years after diagnosis.
Recent years have brought a wealth of new scientific understanding regarding this disease. There are currently five drugs available to treat ALS, and while this is a remarkable achievement, we have more work ahead of us.
H.R. 3537 establishes a grant program through HHS to support research and access to investigational therapies to treat ALS for those patients who cannot access clinical trials. It also directs HHS to establish a public-private partnership for neurodegenerative diseases, which will advance the development and regulatory approval of drugs to help treat ALS and other rare neurodegenerative diseases.
This bill will ring hope to those with ALS and their loved ones by promoting access to potentially breakthrough treatments and help us to one day find a cure for this vicious disease.
Mr. Speaker, I urge my colleagues to support this bill, and I reserve the balance of my time.
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Mr. GUTHRIE. Mr. Speaker, as I mentioned, there are over 300 cosponsors, and we all know that is not an easy task to do at all. It takes a lot of work, a lot of leg work, a lot of effort. The two hardest working people that we have seen this session are Mr. Quigley from Illinois, and my good friend Jeff Fortenberry from Nebraska, who put such effort into this.
Mr. Speaker, I would be remiss if I didn't mention a family as well.
Mr. Speaker, when you first come to Washington, you start getting to know people who come to advocate for diseases and treatments like this. I met the Ensor family. A lady named Kay Ensor came here with her 11- or 12-year-old daughter at the time, Shelby. Shelby came to my office and said:
I can't get a hug from my father anymore, and I don't want any other little girl to feel this way. It may be too late for us, but I don't want it to be too late for somebody in the future.
I got to know them, and I visited them in Lebanon Junction, Kentucky. Their son, Tanner, was probably 8 or 9 at the time. They rigged up a wheelchair so he could go hunting with his father. But then it got to the point where they couldn't do that at all. Then, unfortunately, I was able to attend Mr. Ensor's funeral.
I don't have personal experiences in my family, but just seeing the effort that a family has to go through and the love that they do it in was an example for me to get involved in this issue, and the suffering that the patient goes through but also the extremely difficult circumstances for a family but how they were so loving in everything they did.
I want to close with this: I know that Brian and his wife, Sandra, were there at the hearing and touched every one of us. I want to yield back in honor of the Ensor family from Lebanon Junction, Kentucky, Mr. Speaker.
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