By STARLEE COLEMAN
The Goldwater Institute

A law to give terminally ill patients access to medicines that have passed phase one of the FDA approval process but are not yet on pharmacy shelves has passed both the state House and Senate with unanimous, bipartisan votes, and is on its way to Governor Mike Pence. Governor Pence has seven days to sign or veto the bill once it reaches his desk.

HB 1065, The Indiana Right to Try Act, is sponsored by a bipartisan group of lawmakers.

Right To Try laws are already in place in Arizona, Arkansas, Colorado, Louisiana, Michigan, Missouri, South Dakota and Wyoming. Twenty-five additional states are considering the law this year. Lawmakers in Virginia and Utah have sent similar bills to their governors for approval. The national bipartisan effort to give terminally ill Americans access to investigational medications is being led by the Goldwater Institute.

Five-year old Indiana resident Jordan McLinn and his family have been the face of the Right To Try effort in Indiana. Jordan has Duchenne muscular dystrophy, which will leave him paralyzed within five years and likely dead by age 20. There is a drug being used in clinical trials now that Jordan cannot access, but that is working for young children just like him. His parents have said they cannot afford to wait for the FDA to give the drug its final approval. He could be in a wheelchair by then, they say.

“Americans shouldn’t have to ask the government for permission to try to save their own lives,” said Darcy Olsen, president of the Goldwater Institute. “They should be able to work with their doctors directly to decide what potentially life-saving treatments they are willing to try. This is exactly what Right To Try lets them do.”

The FDA has a process that allows people to ask permission to access investigational medicines. While many people ultimately receive FDA permission, there are dozens of documented cases of people dying while waiting on their approval. The FDA recently announced plans to shorten the application form. “A simpler form is window dressing on an archaic and inhumane system that prevents the vast majority of Americans with terminal illnesses from accessing promising investigational treatments. Patients must still beg the federal government for permission to try to save their own lives, it’s just a shorter form,” said Olsen.

Right To Try is limited to patients with a terminal disease that have exhausted all conventional treatment options and cannot enroll in a clinical trial. All medications available under the law must have successfully completed basic safety testing and be part of the FDA’s on-going approval process.