For the fourth year, the RI House has passed the “Neil Fachon Terminally Ill Patients Right to Try Act.” This bill goes a step beyond the Federal Right to Try law, by allowing terminally ill patients the right to continue using experimental drugs in a hospital setting, and to continue using experimental drugs from clinical trials that have otherwise ended or been canceled, even though the patient may have been receiving benefit from the drug. The bill includes a waiver of liabilities for doctors and hospitals. You can find the bill, 2022-H 7393, on the State House website and read the House press release issued on 3/15/22 for context.
This bill is important to sustain the hope of terminally ill patients who wish to pursue what they believe is their best treatment option. This legislation is important to us, because our son, Neil Fachon, diagnosed with DIPG, was one such patient.
Each time the “Neil Fachon Terminally Ill Patients Right to Try Act” has come up in the RI House, the bipartisan bill has passed with unanimous approval. Each time the RI Senate has allowed the bill to languish and die with little or no debate. The bill has never reached the Senate floor. The will of the House has been summarily ignored. This has to change. The full Senate should engage with this bill and debate the merits on the open floor.
We need you to contact your State Senator and ask him or her to support H 7393, “The Neil Fachon Terminally Ill Patients Right to Try Act.” Also ask your senator to urge members of the Senate Health and Human Services Committee to introduce this bill to the Senate floor. If you contact your senator by email, please cc: Slegislation@rilegislature.gov. Let’s flood the Senate Clerk with emails. Together, we can raise a chorus to help redress this lapse in honoring the rights of the terminally ill.
With hope and gratitude,
Dean and Wendy Fachon