Inspired by RI teen, ‘Right to Try’ bill gains momentum at statehouse

PROVIDENCE, R.I. (WPRI) — A bill is gaining momentum at the state house and was inspired by a local teen who battled a rare form of cancer.

Representative Joe McNamara wants patients to hold on to hope that they will find a cure, even if that involves trying experimental procedures.

At 19 years old, Neil Fachon was diagnosed with a rare form of brain cancer called Diffuse Intrinsic Pontine Glioma. The doctors told his parents it was incurable, but they could prolong his life with radiation treatments.

“It would’ve meant six weeks every Monday through Friday and he’s just kind of like it’s not going to cure me. What’s it going to do with my quality of life,” said the teen’s mom, Wendy Fachon.

No radiation meant only three months to live, but the Fachon family researched and found an experimental treatment in Houston.

“I mean it was the best alternative we could find,” said Dean Fachon.

The Fachon family says the treatment event kept the tumor growth stable. That’s why they helped Representative McNamara draft his ‘Right to Try’ bill.

“It just makes complete sense. If there’s nothing that mainstream medicine can offer other than palliative care, then the door should be wide open,” says Dean.

Representative McNamara’s bill would allow terminally ill patients to obtain experimental drugs that have not yet been federally approved but may be in the final stages of testing. The bill doesn’t require insurance companies to cover the cost of any investigation drugs.

“This bill give hope to patients who have lost it,” says Wendy.

While Neil lost his battle in February, he never lost hope. His fight is not only helping others live longer, but also helps researchers find a cure.

“Because Neil was successful for as long as he was with the treatment, that was a big factor in allowing the clinic to be able to use it with some other patients,” said Dean.

Currently only 24 states have recently approved ‘Right to Try’ laws within the last two years. The “Right to Try” bill passed in the Rhode Island House. It will now head to the Senate for consideration.