Jordan McLinn, the face of Right To Try in Indiana, suffers from Duchenne muscular dystrophy. He is shown with his mother Laura McLinn and Senator Ed Carbonneau, bill co-sponsor)
By STARLEE COLEMAN
The Goldwater Institute
Gov. Mike Pence signed into law a bill 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. The bill passed both the state House and Senate with unanimous, bipartisan votes. HB 1065, The Indiana Right to Try Act, was sponsored by senator Ed Charbonneau and state representative Charlie Brown.
“We all know the pain of losing someone we love to a terminal illness,” said Darcy Olsen, the president of the Goldwater Institute, the group leading the national, bipartisan Right To Try effort. “If you know there’s a treatment that is helping people survive, who is anyone to say ‘No; you don’t have the right to try to save your own life or to save your child’s life’? Of course you do. Of course people should have the right to try promising medicines when they are fighting for their lives.”
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 he is only expected to live until 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. He 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.
“When I first heard about Right To Try, I felt so hopeful that there might be another avenue, another chance, for Jordan to receive a drug that’s in the pipeline that could add many years and quality to his life,” said Laura McLinn, Jordan’s mother. “This could really and truly help save lives, people’s lives who don’t have time to wait. Real people who have a right to control their own destinies. Jordan’s story is changing lives—and maybe even saving lives. If even one person’s life is saved as a result of Right To Try, it’s all worth it.”
The FDA has a process that allows individual patients to ask permission to access investigational medicines, but fewer than 1,000 people a year receive help. Others die while waiting on their approval. The FDA recently announced plans to shorten the application form. “A simpler form is lipstick on a pig, window dressing for an inhumane system that prevents the vast majority of Americans with terminal illnesses from accessing promising investigational treatments. Compassionate use should be the rule for everyone, not the exception,” 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.