'Right to Try' bill would provide patients hope

Imagine being a 15-year-old on a heart-transplant waiting list for nearly two years. Instead of playing sports or being carefree with your friends, you are confined to a hospital room every day for six months — hooked up to sterile, cold, beeping machines.

After days of waiting and hoping, the day comes when doctors deliver the worst news imaginable: You only have a few months left to live. Those days will be spent at home in the care of family and friends.

You have no hope.

I know this nightmare, because I lived it.

Nearly 20 years ago, I lived through the dark stages of hopelessness. I lived through the mental preparation of saying a final goodbye to my parents and my brothers.

I picked out the readings for my funeral service, the music, the pallbearers.

And then suddenly, on an otherwise-somber day, as I awaited death, I got a miraculous glimmer of hope. My parents and I were presented with the idea of taking a chance on a new heart surgery.

That "experimental" surgery provided my family and me with the hope we needed to keep fighting. It was my miracle and the reason I'm here today.

As a legislator, I serve on both Health and Human Services committees in the Minnesota House. I have a passion for finding solutions that enable our state to deliver lifesaving health care to those who need it.

To achieve that goal, I've authored "Right to Try" legislation.

This proposal, if enacted into law, would allow those with a terminal diagnosis to try medicine or medical devices that have not received final approval from the U.S. Food and Drug Administration (FDA), but have been through the first stage of the approval process.

Four states — Colorado, Louisiana, Michigan and Missouri — have enacted similar legislation.

My intent, as I work with legislators on both sides of the aisle to pass this bill, is to provide some hope to those who have none.

If our neighbor is terminally ill and we know that medication is available that could possibly save his life, why would we not remove barriers to try and save him?

The most difficult time of my life was when I had no hope.

No hope of getting better. No hope of going to high school. No hope of ever being a normal kid.

When you live without hope, you also begin to lose your faith in living. It's my objective that this legislation will serve as a beam of hope for those who are toiling in the anguish of hopelessness.