In 2019, I wrote to then-President Trump urging him to award the National Medal of Science and the National Medal of Technology and Innovation, but he unfortunately never did during his term.

This is particularly disheartening given that every American has benefited from the extraordinary work of scientists to protect us from the Covid-19 pandemic by developing highly effective vaccines so quickly.

My legislation addresses this problem by requiring each medal to be awarded annually on a fixed schedule.

We need better multidiscipline coordination between FDA, NIH, academic researchers, private drug companies, and patients.

Everyone here shares the same goal: Full approval for effective drugs.

Our work today is to help create the fighting chance against these deadly diseases.

I am proud to have brought this hearing forward. It was highly intentional, because it was, really, desperately needed.

You have been the stars. Every Member here, every Member, has hung on every word that you have uttered.

None of it has been a waste of time. None of it, not 1 minute.

So if FDA had a similar authority for a conditional approval pathway, would that give the FDA more flexibility in getting potentially promising therapies to dying patients sooner?

Finally, there needs to be clarity and transparency about the standards for approval for deadly diseases with unmet medical needs.

With ALS, a piece of you dies every single day. We are simply asking for a fighting chance to live the lives we were meant to live.