HEALTH

Utah couple plead with Congress to pass ALS legislation

Nov 19, 2021, 2:26 PM | Updated: 5:59 pm

Equality Act...

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)

(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 AACT for ALS 

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.”

The fight for ALS legislation

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.  

Read more:

We want to hear from you.

Have a story idea or tip? Send it to the KSL NewsRadio team here.

Health

code blue alert issued for multiple northern Utah counties...

Becky Bruce

Code Blue Alert issued for multiple northern Utah counties

Salt Lake County declared a Code Blue Alert on Sunday night and multiple Utah counties expected similar conditions Monday.

4 hours ago

(Canva)...

Michelle Lee

The hidden dangers of too much sugar

Let’s Get Moving Host Maria Shilaos spoke with Health Educator Troy Duell to learn about the hidden dangers of sugar.

1 day ago

Chief of Police for Price City Police Department, Brandon Sicilie, holding PeeDee....

Britt Johnson

Abandoned puppy finds a home at the Price Police Department

PeeDee, a puppy found on the side of a roadway during a dispatch call, has found a new home with the Price City Police Department.

3 days ago

cdc sign shown, the agency updated its covid guidelines...

Brenda Goodman, CNN

CDC drops 5-day isolation guidance for COVID-19

The CDC says it’s updating its guidance for Covid-19 to bring it in line with its advice for other kinds of respiratory infections, including influenza and RSV.

3 days ago

baby feet, utah postpartum retreat helps new moms...

Britt Johnson

Utah company aims to help postpartum moms with special retreats

The founder of Utah Postpartum Retreat said she thinks new moms are at high risk for developing postpartum mood disorders because they lack support.

3 days ago

A nurse works in the laboratory room in El Nuevo San Juan Health Center at the Bronx borough in New...

Tammy Kikuchi

Skeptics have doubts about universal health care model for Utah

One of the biggest concerns is affordability, according to a recent presentation at the Kem C. Gardener Policy Institute.

5 days ago

Sponsored Articles

Mother and cute toddler child in a little fancy wooden cottage, reading a book, drinking tea and en...

Visit Bear Lake

How to find the best winter lodging in Bear Lake, Utah

Winter lodging in Bear Lake can be more limited than in the summer, but with some careful planning you can easily book your next winter trip.

Happy family in winter clothing at the ski resort, winter time, watching at mountains in front of t...

Visit Bear Lake

Ski more for less: Affordable ski resorts near Bear Lake, Utah

Plan your perfect ski getaway in Bear Lake this winter, with pristine slopes, affordable tickets, and breathtaking scenery.

front of the Butch Cassidy museum with a man in a cowboy hat standing in the doorway...

Bear Lake Convention and Visitors Bureau

Looking Back: The History of Bear Lake

The history of Bear Lake is full of fascinating stories. At over 250,000 years old, the lake has seen generations of people visit its shores.

silhouette of a family looking over a lake with a bird in the top corner flying...

Bear Lake Convention and Visitors Bureau

8 Fun Activities To Do in Bear Lake Without Getting in the Water

Bear Lake offers plenty of activities for the whole family to enjoy without having to get in the water. Catch 8 of our favorite activities.

Wellsville Mountains in the spring with a pond in the foreground...

Wasatch Property Management

Advantages of Renting Over Owning a Home

Renting allows you to enjoy luxury amenities and low maintenance without the long-term commitment and responsibilities of owning a home.

Clouds over a red rock vista in Hurricane, Utah...

Wasatch Property Management

Why Southern Utah is a Retirement Paradise

Retirement in southern Utah offers plenty of cultural and recreational opportunities. Find out all that this region has to offer.

Utah couple plead with Congress to pass ALS legislation