Accelerating Access to Critical Therapies for Als Act

Floor Speech

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Mr. QUIGLEY. Mr. Speaker, everything is impossible; until it isn't. Nothing has a cure; until it does. Today, people diagnosed with ALS are expected to live between 2 to 5 years. During that time, they progressively lose their ability to use their limbs, to speak, to swallow, and ultimately to breathe. Being diagnosed with ALS is a death sentence; for now.

After my friend Brian Wallach was diagnosed with ALS an odds-defying 4 years ago, he made ending the disease the fight of his life. Not today, ALS, he frequently says, not today.

Mr. Speaker, ALS is not incurable; it is just that we have not fully committed to finding a cure yet. Not like Brian has, not like Brian's wife Sandra has, or the organization they founded, I AM ALS has.

ACT for ALS will give people living with ALS access to promising treatments and improve the research infrastructure we need to one day find the cure. Cruelly, up to 90 percent of people living with ALS are ineligible for clinical trials.

For people with such an aggressive disease to have neither an effective FDA-approached treatment nor access to promising drugs is a tragedy. ACT for ALS will correct this.

I would like to thank the 331 colleagues who have cosponsored this bill, Chairman Pallone, Subcommittee Chairwoman Eshoo, and their staffs, for standing with the ALS community. I also want to extend a special thank you to Congressman Fortenberry, the colead on this bill, who has pursued our shared goal with relentless dedication. I thank my staff, Allison Jarus and David Steury, who have gone above and beyond in pursuit of this legislation.

This indeed is not a congressional achievement, it is an achievement of a community of advocates all around the country who are fighting for their lives, the lives of their loved ones, and the lives of everyone affected by ALS.

In addition to Brian and I AM ALS, I want to thank the Muscular Dystrophy Association and the ALS Association for their dedication. ALS may rob people of their physical ability to speak, but make no mistake, this community has made themselves heard. It is their will that has brought this vote to us today; it is their will, and with that will there is a way.

Where there is consensus, there can be progress. Where there is funding, a cure will follow. Today belongs to the tireless advocates, to the families of people with ALS, and to every American living with the disease.

Mr. Speaker, I urge a ``yes'' vote.

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