The U.S. Capitol is seen, Thursday, Dec. 24, 2020, in Washington. On Thursday, the U.S. Sentate passed a bill that will keep the government open through Dec. 23. (AP Photo/Jacquelyn Martin)
SALT LAKE CITY — A couple whose husband has an aggressive, rare form of amyotrophic lateral sclerosis, or ALS, is pleading with Congress to pass legislation that would help fund access to drugs that could slow the debilitating disease.
ALS is also commonly known as “Lou Gehrig’s disease,” named after the famous New York Yankees baseball player who was forced to retire after developing the disease in 1939.
Kyle and Colleen Brown from Farmington, who KSL Newsradio first told you about in July, are among the Utahns who are desperate for passage of the Accelerating Access to Critical Therapies Act or AACT for ALS.
“You just want a chance,” said Colleen, speaking on behalf of Kyle who was too emotional to talk.
“ALS comes and goes so fast.You get diagnosed with it; two years later you’re gone,” she said as Kyle sobbed next to her.
Kyle and Colleen are worried it will be too late for Kyle by the time this legislation passes. If it even does.
The bill would create a grant program to fund investigational ALS treatments for patients who cannot participate in clinical trials, invests in neurodegenerative disease research and establishes an FDA collaborative to speed the development and approval of therapies for rare neurodegenerative diseases.
In other words, it would allow people like Kyle to take drugs not yet approved by the FDA but that are made by smaller Pharma companies that can’t afford to make their drugs to give free to people.
A “Right to Try” law and Expanded Access Program already exists where Congress allows terminally ill patients to access drugs in clinical trials if they don’t qualify for trials. Right to Try is broader than Expanded Access in that it bypasses the FDA, so doctors and patients can work directly with drug manufacturers.
But ALS advocates say the laws don’t apply to ALS patients.
“[With] small underfunded diseases where the drugs are developed by small Pharma, there’s no money to pay for the drugs,” said Michelle Lorenz of a national non-profit called Voices with ALS who spoke with KSL NewsRadio.
“It works if you’re a cancer patient and you’re going to a big Pharma company like Biogen or Pfizer or Johnson and Johnson. … If you don’t have any drug revenue coming in, you don’t have anyway to pay for the drugs for people like Kyle to get access.”
Utah Rep. John Curits is fighting for this, too. He’s had several close friends with ALS, and recently testified about them in a House committee hearing on the topic. One of them, a Utah entrepreneur named Warren Osborn passed away recently.
Curtis sits on the two committees, the full Energy & Commerce Committee which unanimously passed the legislation Wednesday.
Lorenz said a full House vote could come just after Thanksgiving.
It’s not known if the bill will be heard in the Senate, despite seeming to have bipartisan support.
It has 330 total sponsors in the House and 45 in the Senate. All four of Utah’s Representatives are sponsors.
Sens. Mitt Romney and Mike Lee are not among the Senate sponsors as of this writing.
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