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New Jersey man fights for access to experimental ALS drug

With the world potentially days away from having a COVID-19 vaccine, research continues to help treat other life-threatening diseases like Lou Gehrig's disease.

News 12 Staff

Dec 8, 2020, 1:52 AM

Updated 1,288 days ago

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With the world potentially days away from having a COVID-19 vaccine, research continues to help treat other life-threatening diseases like Lou Gehrig's disease.
Forked River resident Josh Smith, 31, was an athlete and football coach who ran a construction business with his father. But his world was turned upside-down when he was diagnosed with ALS in March of 2019.
“When I first got diagnosed, I mean honestly, I felt like I died on that day…You lose every dream that you had. It’s kind of out the window,” Smith says.
With an average lifespan of two to five years after diagnosis, Smith says that he put his dreams aside to fight the illness. His doctors suggested that he search for an experimental treatment since he was young and still strong.
That experimental treatment is a drug known as NurOwn – a phase three treatment. Smith’s family says that the treatment appeared to slow the progression of the disease. However, the trial treatment is only temporary. He no longer has access to the drug.
“I put my body through this for the sake of data. Now give me the drug for the sake of me, now,” Smith says.
Smith and other ALS patient advocates are pushing for House Bill 8662, which would increase the opportunity for patients to access investigational therapies and $100 million each dedicated to research and development to find a treatment and cure. District 4 U.S Rep. Christopher Smith says he co-sponsored the bill last week.
"The sooner we get that and other kinds of therapeutics out to people – and we need to fast-track it like we're doing with COVID, like the vaccine which is on a fast track. It can be done. This bill will help facilitate all of that,” Rep. Smith says.
Meanwhile, Josh Smith says that he will keep fighting.
“My dad told me when I was a kid just never give up. You got to be in the fight to win the fight, so here I am in the fight,” he says.
Bill 8662 is known as the Accelerating Access to Critical Therapies for ALS Act. It was introduced to the House on Oct. 23 and was referred to the House Committee on Energy and Commerce. But so far, the committee has not taken any action to release the bill for a vote.


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