On August 3rd, the U.S. Senate passed the “Right to Try” bill, designed to make it easier for terminally ill patients to get access to experimental treatments approved by the Food and Drug Administration (FDA) Phase 1 trials. The bill passed with unanimous consent, and will now go to the house — and eventually to President Donald Trump’s desk.
Newtown Athletic Club (NAC) in Newtown, Pennsylvania, played a vital role in helping the bill get passed. And it all started when Matt Bellina, a Newtown resident, inquired about a membership to the high-end fitness facility. A retired navy pilot, Bellina revealed to NAC that he had Amyotrophic Lateral Sclerosis (ALS) — the reason why he had been forced to retire — and asked if the club would like to get involved in a search for the cure.
Over the years, NAC had donated and raised tens of thousands of dollars for Augie’s Quest, founded by industry veterans Augie and Lynne Nieto, with the goal of finding treatments and cures for ALS. However, after welcoming Bellina into the NAC family, the club’s fundraising efforts were further energized. Almost immediately, NAC’s “Matt’s Mission” would be born, with Bellina and his family as the face of the local Augie’s Quest cause.
“To know Matt is to love him,” said Jim Worthington, the owner of NAC. “We just started raising larger sums of money for Matt’s Mission and Augie’s Quest.”
However, Worthington wanted to do more. On average, those diagnosed with ALS live two to five years after being diagnosed. As a result, he feared Bellina wouldn’t live to see a cure for ALS discovered.
“I knew him well enough to say, ‘Matt, as we’re trying to find a cure through Augie’s Quest, who knows if we’re going to find one before you run out of time. Is there anything else we can do? Can we send you to another country? Are there drugs out there that somehow we can access?’” recalled Worthington.
That’s when Bellina mentioned the Right to Try bill, which had been introduced by Senator Ron Johnson (R-WI), but had not yet passed in the Senate. Bellina believed the bill would give terminally ill patients hope that their lives could be prolonged or even saved. “He told me that, and I’m naive — I’m the kind of person that says, ‘OK, let’s just do it. Let’s get this bill passed,” said Worthington.
So NAC got to work. Worthington and Linda Mitchell, NAC’s director of public and government relations, began making connections with their local congressman — Mike Fitzpatrick — and garnered support for the Right to Try bill. When Mike Fitzpatrick’s term ended, his seat was taken over by his brother, Brian Fitzpatrick, who ramped up his efforts and took the bill to the next level in the congressional halls.
At the same time, the bill was being pushed by a number of other groups across the U.S., including: the Goldwater Institute; the McLinn family — Indiana resident Laura McLinn’s eight-year-old son Jordan was diagnosed with Duchenne muscular dystrophy, a deadly form of the disease; and Frank Mongeillo, a 48-year-old resident of Bucks County, Pennsylvania, with ALS.
A turning point for the Right to Try bill came in 2016, when Worthington ran as a republican delegate in his local district. He won the seat — which eventually led to NAC having the opportunity to host a rally for then candidate Donald Trump. Worthington saw the event as an opportunity to earn further support for the Right to Try bill.
“On a Wednesday night in October, I got a call at 8:00 p.m. at night, saying [Donald Trump] is coming to your club on Friday, can you make it work?” said Worthington. “I said absolutely, but you have to give us 15 to 20 minutes with Mr. Trump, me, Matt Bellina, and Linda Mitchell, to discuss the Right to Try bill. That was part of the deal and they gave us that. We wanted access, we wanted to be able to push our agenda for the Right to Try bill.”
On August 3rd, the combined efforts of all the groups involved culminated in the Right to Try Bill passing in the Senate.
“It was just unbelievable,” said Worthington. “We thought best case is we might get this passed after the first of next year or even later next year. Never did we think it would pass through any part of Congress this quickly. It just shows you that when people do this grassroots work, get involved, make a point to know their senators and congressman, it’s amazing what can get done. It was unbelievable team effort.”
At this point, the bill will pass through the House of Representatives, where it has bi-partisan support, and then on to the President’s desk to be signed. According to Worthington, the same day the bill passed through the Senate, Vice President Mike Pence called Bellina personally, to assure him that the President is looking forward to signing the bill in late September.
Now, NAC hopes to use that same grassroots power toward passing the PHIT Act, legislation that is currently pending in Congress, that’s goal is to allow Americans to use Pre-Tax Medical Accounts to pay for physical activity expenses, including at health clubs.
“In the fitness industry, getting the PHIT Bill passed will be the biggest thing that’s happened in this industry perhaps ever as it relates to legislation,” said Worthington. “We can use the Right to Try bill as a simple civics lesson on how to get things done, and in this case we’re going to apply it to PHIT. And we, as an industry, are going to get that done. I can guarantee you we’re going to get it done.”