Arkansans are fighting in Washington for more resources for ALS patients, hoping a bipartisan bill can bring answers to this deadly disease.
The bill is called The Accelerating Access to Critical Therapies for ALS Act. It would provide $100 million each fiscal year from 2022-2026 to fund early access to ALS investigational therapies, accelerate ALS and neurodegenerative disease therapy development, and provide more research and development of interventions through a new Food and Drug Administration (FDA) research grants program.
Those pushing for the bill say because this disease takes lives so quickly, time is not on our side, and there’s an extreme urgency to get this passed.
Kelly Dunaway’s dad was diagnosed with ALS in 2020; he died five months later.
“I went to go grab lunch one day he was going to take a shower I came back and I was like, ‘Dad, why didn’t you take a shower?’ she asked. “He couldn’t unbutton his shirt to take a shower.”
Tommy Culpepper was diagnosed in 2019 and given a prognosis of 5-6 years.
“That’s the version of ALS that I have-the one that’s not treatable,” he said.
Lara Blume McGee is the founder of a non-profit in Arkansas called ALS in Wonderland that provides resources for ALS patients. She is urging lawmakers to get behind this bill, hoping it will provide research, treatment and funding for patients.
This money is past due and definitely needed, and we can definitely find a cure. It’s out there, but we definitely need the funding.”
LARA BLUME MCGEE, FOUNDER, ALS IN WONDERLAND
Jack Silva works with the ‘I AM ALS’ legislative affairs team; he is working alongside McGee to get this bill passed.
ALS was discovered 160 years ago and Lou Gehrig, known as Lou Gehrig’s disease- the famous baseball player- he died over 80 years ago and not much has changed in treatments in all this time.”
JACK SILVA, ‘I AM ALS’ LEGISLATIVE AFFAIRS TEAM
But, it is a waiting game right now on Capitol Hill. The next step for the bill is a house vote.
“What we would like to do is provide all of the medicines that we can, all of the treatments,” said U.S. Senator John Boozman (R- Arkansas). “These things sometimes takes years and years and years in order to acquire, so we’re trying to speed that process up.”
Senator Boozman is co-sponsoring the bill. He said another benefit from this bill would be further collaboration with the National Institutes of Health to focus more on new treatments and getting drugs approved.
The bill is also geared towards helping Veterans, which Senator Boozman also said contributed to his decision to co-sponsor the bill. McGee said this protection is important because Veterans are two times more likely to get this disease.
As Culpepper waits to see what is next for this disease that has so many question marks- he said it is all about focusing on what ALS can’t take from him: his mindset.
There’s life and there’s living life. I’m not going to be too pressed on what is outside of my control-which is this particular disease. I need to concentrate on the positivity, the fact that I woke up this morning next to my beautiful wife.”
TOMMY CULPEPPER, FIGHTING ALS
McGee said she is hopeful to see it pass before the new year to secure funding for next year. Senator Boozman said he feels confident that can happen before the new year or early 2022.
Original source can be found here.
