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Curtis Advocates for ALS Patients on House Floor

Today, Rep. John Curtis (R-UT) addressed his colleagues on the House Floor as he fought for better treatment options for ALS patients. He highlighted that the Right to Try Act should not be the end of the conversation and urged the FDA to swiftly approve the groundbreaking and life-saving treatments already approved internationally.

https://www.youtube.com/watch?v=DlR676J-BRg&feature=youtu.be

“I applaud the enactment of the Right to Try Act – allowing some people another option to receive the treatments they need. However, this should not be the end to the conversation, and it’s important to acknowledge that the passage of this act has not opened all of the doors we expected and many are still denied access to treatments… Delaying approval of this treatment, commonly known as NurOwn, is putting lives at risk. I urge the FDA to prioritize its approval and give access to thousands of ALS patients.”

Full text of the speech, as prepared for delivery, can be found below:

“Madam Speaker, I rise to share my concerns with patient access to groundbreaking and life-saving ALS treatments. This is a very personal issue to me as some of my close friends and neighbors have been affected by this difficult disease.

I applaud the enactment of the Right to Try Act – allowing some people another option to receive the treatments they need. However, this should not be the end to the conversation, and it’s important to acknowledge that the passage of this act has not opened all of the doors we expected and many are still denied access to treatments. 

The FDA’s lengthy approval process continues to limit patient access – at times forcing my constituents to spend large sums of money traveling overseas for treatment or more commonly, forfeit treatment all together.

The use of stem cells to treat ALS, widely used and deemed safe in other countries, has been studied in the U.S. for over 12 years but has yet to be approved, despite its fast-tracked status.

Delaying approval of this treatment, commonly known as NurOwn, is putting lives at risk. I urge the FDA to prioritize its approval and give access to thousands of ALS patients.

I yield back the balance of my time.”

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