By Rep. Joseph M. McNamara and Kurt Altman
When Navy fighter pilot Matt Bellina was 30, he went to the doctor to have some odd symptoms checked out. The diagnosis was a shock: Lou Gehrig’s disease, or ALS. ALS is always fatal, usually killing its victims within three years. That was two years ago.
Matt is still with us; but walking, talking, and other basic functions are getting harder every day.
It’s stories like Matt’s that inspired me to introduce the Rhode Island Right To Try Act, which easily passed the House and is now being considered in the Senate.
Every year a million Americans with terminal diagnoses will hear from their doctor that there are no options left, and it’s time to get their affairs in order. What their doctors really mean is that in their toolbox of approved medications, there’s nothing left.
The truth is there are more than 500 treatments just for cancer stuck in the FDA’s pipeline right now; many already available and saving lives in Europe. Right to Try allows patients with terminal illness, who have tried all existing treatments with no success and cannot enroll in a clinical trial, with their doctor’s recommendation and help, to access new treatments that are being safely used in government-approved clinical trials but have not yet been fully approved.
Twenty-eight states have adopted Right to Try and it has been introduced in another 19. We’re not talking about pimple cream for healthy teens. This is about diseases that will kill you if you don’t get help right away.
If you were on a sinking ship, would you pass the only available lifeboat because the government hadn’t finished certifying it yet? Of course not, you’d say, put the lifeboat in the water. Right To Try gets the lifeboats in the water. As Ted Harada, a 38 year old ALS sufferer has said, “it’s not called Right to a Cure, it’s called Right to Try, don’t deny us that opportunity.”
In a recent article, Lisa Kearns and Arthur Caplan argued this is too risky and could cause a more accelerated or painful death. But the only treatments available under Right To Try are those that the FDA has already said are safe. These drugs are already being given to patients lucky enough to qualify for government-sanctioned clinical trials. So any patient using the drug under a Right To Try law is facing the exact same risk as people in clinical trials.
Fewer than 3 percent of cancer patients are selected for clinical trials. That leaves 97 percent stuck unable to access a drug in trials that their doctor, based on medical evidence and judgment, believes is their best hope. HB 7156 is for those 97 percent.
Matt’s wife, Caitlin, says it better than I ever could: “Our government asked Matt to strap a rocket to his back and go fly to defend the country, but now when it’s his turn and something is wrong with him, the government says ‘Sorry. It’s too dangerous for you to try that.’”
I don’t want the government to tell dying people that they don’t have the right to try to save their own lives. I want the government to remove barriers that prevent healthcare professionals from providing the care that they are trained to give.
Right To Try laws have helped more than 40 patients access a drug that is finishing its final clinical trial phase and that has already been approved for use in other developed countries. These laws are saving lives today. This is not “false hope,” as Kearns and Caplan profess from their ivory research tower, it is real treatment for real people that was unattainable until Right to Try became law in their states.
If your loved one were dying from a terminal illness and there were promising treatments that could help them, you’d do anything to get them. We shouldn’t make people fighting for their lives fight the government, we should help them. That’s why we must pass the Right To Try law this session. Rhode Island is the state of hope and HB 7156 simply provides a much-needed tool that will give Rhode Islanders, not a guarantee, but an opportunity to take action to make that hope a reality.
Joseph M. McNamara is a Democratic state representative from District 19 in Warwick. He is the chairman of the House Committee on Health, Education and Welfare. Kurt Altman is Of Counsel to the Goldwater Institute.