House passes bill that would allow terminally ill to try experimental drugs

By: Chloe Leshner

cleshner@abc6.com

@ChloeLeshner

PROVIDENCE, R.I. (WLNE) — A bill that could give people suffering from a terminal illness another shot at treatment, unanimously passed in the Rhode Island house. The "Right to Try" bill would allow patients to use experimental drugs that haven’t been passed by the FDA yet.

The bill is named after Neil Fachon a 20-year-old from East Greenwich who died from an aggressive brain tumor in 2017. His parents say it’s a clinical trial that gave them the hope they’d get more time with their son.

"If he did not get radiation therapy he might have 3 months to live. With radiation therapy he might buy 6 months total," says Wendy Fachon, his mom.

But he wasn’t interested in a temporary fix. Diagnosed with DIPG, a rare and aggressive brain stem tumor, he wanted to be part of a clinical trial.

"That was the real ray of hope," says his dad Dean.

But he was denied the drug for some time because of red tape and after taking legal action, finally got the treatment.

"He outlived his prognosis by a factor of 4. He lived almost a year, 9 months longer than the 3 month prognosis that he was given," says Mr. Fachon. He attributes that to the experimental treatment.

His parents are now champions of state legislation that would allow terminally ill people to try experimental drugs not yet approved by the FDA. These medicines would still have to pass the first part of a clinical trial.

"If more headway is made they’d be able to access, perhaps they need a combination of therapies, be able to get that ready access without having to wait for permission from the FDA," says Mrs. Fachon.

Giving other families the chance to have what Neil wanted, more time.

"He’d be 110% on board. He’s on our shoulders right now. His name is on the bill," they say.

The bill now moves to the senate which is considering a similar bill.

(C) WLNE/ABC 6 2018