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Right to Try: New federal law gives one PA family “hope”

LOWER MAKEFIELD TOWNSHIP, BUCKS COUNTY, P.A. --- Frank Mongiello, from Yardley, is a father of six.

He was a coach and a "Tough Mudder."

But everything changed from him in October 2015.

He was diagnosed with Lou Gehrig's Disease, or ALS: a disease attacking the nervous system that weakens muscles and physical function.

In a little over two years since his diagnosis, his family says the incurable disease has hit Frank, rapidly.

He can only communicate with his eye gaze.

"It's wonderful technology where there are retina trackers that's looking at his eyes and he looks at letters and he's able to formulate communication," said Frank's wife, Marilyn.

She said they began pushing for "Right to Try" legislation shortly after Frank's diagnosis.

"Right to Try" is a potentially easier way for terminally ill patients, like Frank, to get access to drugs undergoing clinical tests by the Food and Drug Administration.

"Currently, the requirements to get into a clinical trial are so narrow that I would be rejected or wait the eight to twelve years to get final approval from the FDA. Time I don't have," said Frank.

After almost a year of door knocking on Capitol Hill, Marilyn said she believes their breakthrough came at an August 2016 campaign rally in Lancaster.

Her son, Zack, issued an emotional plea to then-candidate Mike Pence for "Right to Try" legislation support.

Pence promised to "get it done."

"It was a day of hope. We left there strengthened, fortified, with hope," said Marilyn.

Nearly two years after that campaign rally, President Donald Trump signed a federal Right to Try bill into law on May 30 with Frank and his family in attendance

A moment he called "surreal."

"We've had so many setbacks along the way that sometimes I didn't think I would be alive to see this day. In fact, I hardly slept the night before because I felt like a little boy on Christmas Eve awaiting Santa Claus," said Frank.

After the signing, the family had a moment with Vice President Pence.

He thanked Zack for speaking out at the campaign rally and gave Zack an official pen, with President Trump's signature.

"He was very compassionate to my family. I felt like he knew what we were going through and he was down to Earth," said Zack.

In Pennsylvania, the Right to Try concept isn't necessarily new.

A Right to Try law was passed unanimously and signed by Governor Tom Wolf in October.

Representative David Zimmerman, a co-sponsor of the bill, said their bill gives qualifying patients access to drugs that passed phase one of the FDA clinical trials.

He said the bill President Trump recently signed makes those rules more lenient.

"There's no limitations. I can completely get around the FDA process," said Zimmerman.

His sister-in-law, Doris, is fighting the same illness as Frank Mongiello, ALS.

He said he want to see the federal Right to Try bill simplify the FDA's approval process.

"It hits very close home and I'm clearly open to trying some things like this. At the same time, I want to see us get more and more products and drugs approved, as well, that are actually working," said Zimmerman.

Now, the fight continues for the Mongiello's.

"Our next step is to find a drug that may stop the progression of ALS, slow it, or, the best scenario: restore some of my losses," said Frank.

Their family says questions remain, including the role of health insurance and the costs of prototype medication.

"I would hope the right to try is not the right for the rich," said Marilyn.

However, they say these questions and possibilities were once thought impossible-

They believe this could be a turning moment for terminally ill patients, nationwide.

"Hope and prayers...that hopefully, one day everything will be okay and that's all we have is hope. That one day, my dad will be okay," said Frank's daughter, Samantha.

Frank Mongiello's name joins three other patients in the title of the federal bill.

Because of his condition, his family hopes the new Right to Try guidelines are put in place quicker than, for example, the year-long process of getting medical marijuana up and running in Pennsyvlania.