Terminally ill patients in Indiana who have run out of FDA-approved options can now turn to treatments and medicines in the testing phase.
Gov. Mike Pence signed House Bill 1065, more commonly known as th "right-to-try" bill, into law on Tuesday.
The bill, sponsored by State Sen. Ed Charbonneau, R- Valparaiso, is designed to get potentially life-saving medications into the hands of patients who do not have success with traditional treatments.
Under the legislation, the doctor, hospital and manufacturer must approve the use of the drug before patients can use it. The bill also prevents patients from using drugs in which the likely harm outweighs their chance of death.
The law does not come without some concerns. Because the U.S. Food and Drug Administration hasn’t fully approved the medicines, they can come with some unknown side effects. Patients also will be responsible for the costs. The law doesn’t require insurance to cover any medicine or devices the patient obtains under the law, which means the drugs may only be available to wealthier Hoosiers. The cost of the treatment is under the discretion of the various pharmaceutical companies offering the experimental drugs.
Instrumental in the testimony process was 5-year-old Jordan McLinn. “Please say 'yes',” Jordan said to lawmakers during one committee meeting.
McLinn's life is expected to be cut drastically short by the muscle-wasting disease Duchenne Muscular Dystrophy. Earlier in the legislative session, his mom made an emotional plea to lawmakers to pass the law that makes it legal for her son to try a promising drug.
“It’s not a cure,” said Laura McLinn, “But to me, when you say you can add 20, 30, 40, 50 years to a child’s life, that’s saving his life.”
Some of the drugs that patients will now have access to have been legalized overseas. Indiana joins Arizona, Colorado, Louisiana, Michigan and Missouri as right-to-try states.