Discussion · Senate
Lisa Murkowski Republican
“The Senate passed our bill to keep funding ALS research and treatments. This law helps patients try new medicines and keeps scientists working on cures. We must keep this work going without delay, and we still need to pass two more bills to help ALS patients.”
“Mr. President, since I am here on the floor and since I have my friend and partner who has worked with me on other matters of great import and impact, I want to take this opportunity to celebrate something that happened last evening when we here in the Senate passed the reauthorization of the ACT for ALS bill. This bill has passed the House, it has now passed the Senate, and it can head to the President for his signature. The path on this one, again, should have been easy. It should have been easy, but it just hasn’t been. It has taken years of work here in the Congress and even more years of work and effort and heartfelt effort from the ALS community, who are amazing men and women--the people who live with ALS and their families, their caregivers, the researchers, the advocates who share their stories and kept pushing us to keep moving this forward. We passed the ACT for ALS in 2021. That was an enormous milestone, and, again, I appreciate my colleague here. But what it meant for those who have been diagnosed with ALS to know that for the first time, there would be this pathway for individuals who have an ALS diagnosis who are not eligible for clinical trials to be able to access these investigational treatments. So we have made good progress. We pushed funding to NIH and to FDA so that we can accelerate the research and we can help move more of these promising treatments from the laboratory to the people who need them. So we have been working with our partners in the House, Senator Coons and I along with Representatives Calvert and Quigley, on this reauthorization--good, strong bipartisan progress in both the House and the Senate. We thought we were cooking. We are going to make this thing happen. We are going to get it across before the September 30 deadline. And then we were literally running out of time. I think my colleague and I would both agree we respect the legislative process. There are times when slowing things down makes good sense, but when it comes to ALS, a slowdown, a lapse in authorization--this is not just a procedural issue; this is disruptive. It causes uncertainty. It causes so much anxiety for those who are already navigating such an unpredictable and such an uncertain disease. Families should simply not have to wonder about whether or not the research infrastructure and the treatment access pathways they are relying on are now going to disappear because a Federal authorization has expired. That is what this reauthorization does. It continues that continuity so that the work that has been built continues and it doesn’t have to stop and restart, because ALS is progressive and not in a positive way. Every day, it is harder and harder. People living with ALS and their families cannot put their lives on hold while they are waiting for the next breakthrough because every single day matters. So what this is about is to see the momentum that has been built over these past 5 years. The ALS community has helped build this momentum, and it is through the research networks, it is through the collaborations, the new pathways. But this reauthorization is about protecting the momentum that has been built. So it is not just about preserving a program; it is preserving the momentum, preserving the options, and preserving the hope because that is what these families are clinging to every day, is that when you are facing a disease that does not wait, that maybe today is going to be the day for that breakthrough. I am so honored to work alongside my colleague Senator Coons. He could not be a better advocate. I am so honored to work with so many ALS advocates and the broader ALS community. We have more work to do. We still have to get the Justice for ALS Act and the ALS Better Care Act. We are going to do that. But I am so enormously grateful for the persistence we have shown, the heart that has been here, and, again, the success that was achieved here in the Congress, and now, moving forward, the hope that will continue with the families and those who live with ALS. With that, I yield to my colleague and partner in all of this, Senator Coons.”
Mr. President, since I am here on the floor and since I have my friend and partner who has worked with me on other matters of great import and impact, I want to take this opportunity to celebrate something that happened last evening when we here in the Senate passed the reauthorization of the ACT for ALS bill. This bill has passed the House, it has now passed the Senate, and it can head to the President for his signature. The path on this one, again, should have been easy. It should have been easy, but it just hasn’t been. It has taken years of work here in the Congress and even more years of work and effort and heartfelt effort from the ALS community, who are amazing men and women--the people who live with ALS and their families, their caregivers, the researchers, the advocates who share their stories and kept pushing us to keep moving this forward. We passed the ACT for ALS in 2021. That was an enormous milestone, and, again, I appreciate my colleague here. But what it meant for those who have been diagnosed with ALS to know that for the first time, there would be this pathway for individuals who have an ALS diagnosis who are not eligible for clinical trials to be able to access these investigational treatments. So we have made good progress. We pushed funding to NIH and to FDA so that we can accelerate the research and we can help move more of these promising treatments from the laboratory to the people who need them. So we have been working with our partners in the House, Senator Coons and I along with Representatives Calvert and Quigley, on this reauthorization--good, strong bipartisan progress in both the House and the Senate. We thought we were cooking. We are going to make this thing happen. We are going to get it across before the September 30 deadline. And then we were literally running out of time. I think my colleague and I would both agree we respect the legislative process. There are times when slowing things down makes good sense, but when it comes to ALS, a slowdown, a lapse in authorization--this is not just a procedural issue; this is disruptive. It causes uncertainty. It causes so much anxiety for those who are already navigating such an unpredictable and such an uncertain disease. Families should simply not have to wonder about whether or not the research infrastructure and the treatment access pathways they are relying on are now going to disappear because a Federal authorization has expired. That is what this reauthorization does. It continues that continuity so that the work that has been built continues and it doesn’t have to stop and restart, because ALS is progressive and not in a positive way. Every day, it is harder and harder. People living with ALS and their families cannot put their lives on hold while they are waiting for the next breakthrough because every single day matters. So what this is about is to see the momentum that has been built over these past 5 years. The ALS community has helped build this momentum, and it is through the research networks, it is through the collaborations, the new pathways. But this reauthorization is about protecting the momentum that has been built. So it is not just about preserving a program; it is preserving the momentum, preserving the options, and preserving the hope because that is what these families are clinging to every day, is that when you are facing a disease that does not wait, that maybe today is going to be the day for that breakthrough. I am so honored to work alongside my colleague Senator Coons. He could not be a better advocate. I am so honored to work with so many ALS advocates and the broader ALS community. We have more work to do. We still have to get the Justice for ALS Act and the ALS Better Care Act. We are going to do that. But I am so enormously grateful for the persistence we have shown, the heart that has been here, and, again, the success that was achieved here in the Congress, and now, moving forward, the hope that will continue with the families and those who live with ALS. With that, I yield to my colleague and partner in all of this, Senator Coons.