Proposed federal law provides hope for some terminally ill

(Bedford) Times-Mail

Don’t give up. Don’t ever give up.” — Jim Valvano

Imagine your child has been diagnosed with Duchenne muscular dystrophy, a disease with no discernible cure. You have explored and exhausted every conceivable option.

Though an experimental, potentially life-saving drug has shown promise, the Federal Drug Administration has yet to approve the drug, rendering it unavailable to your child.

Laura McLinn doesn’t have to envision this somber scenario. The Indianapolis mother experienced it. Her son, Jordan, is afflicted with the merciless malady.

In Washington, D.C., the U.S. Senate passed the Right to Try Act, a bipartisan measure sponsored by Sens. Joe Donnelly, D-Indiana,  and Ron Johnson, R-Wisconsin, that would permit terminally ill patients who have exhausted all approved treatment options to access certain “investigational” drugs for treatment.

Donnelly was introduced to the McLinn family last year and has worked closely with them to advance the legislation.

“Our family became huge advocates for the Right To Try law as we realized that there are so many people like our family who want the right to try potentially life-saving drugs,” Laura McLinn explained. “There are so many terminally ill people who don’t have that time to wait

“Jordan is now in a clinical trial where he is receiving an experimental drug that we hope will slow the progression of his fatal disease. Our family continues to advocate for this legislation for all of the people who aren’t that lucky right now. We also continue to advocate for Jordan. He, too, could benefit from this becoming law one day in the future.”

In 2015, then-Gov. Mike Pence signed a similar measure in Indiana.

The proposed legislation that passed the Senate this week now moves to the House of Representatives for a vote. Donnelly is hopeful the House will consider it when it returns to session in September.

Life is precious, fragile and, unfortunately, fleeting.

Any reasonable opportunity to preserve it should be explored and embraced.

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