As President Trumpthe "Right to Try Act" into law Wednesday afternoon, 8-year-old Jordan McLinn of Indiana bashfully attempted to hug the president, who missed his first few tries. After a third attempt, the two embraced.
McLinn has Duchenne muscular dystrophy, a degenerative genetic disease. Symptoms first appear at 3 to 5 years of age, and children afflicted with DMD are likely to be wheelchair-bound by the age of 12. Life expectancy was until recently very short -- many did not survive beyond their teen years, according to the DMD website. But advances in care have extended life expectancy into the early 30s and longer in recent years.
Supporters say the legislation Mr. Trump signed Thursday could help McLinn get access to experimental drugs and treatments not yet approved by the Food and Drug Administration (FDA).
"There are no options, but now you have hope. You really have hope," Mr. Trump said during the signing.
Mr. Trump gave McLinn one of the signing pens, squeezed his cheeks and made a joked about getting the pen back later.
The youngster is no stranger to politics. When the "Right to Try" legislation came to the House in March 2018, Republican representatives brought McLinn and other terminally ill patients to the House chamber. He sat next to Rep. Greg Walden, R-Oregon, while the House discussed the potentially life-saving bill.
McLinn alsoin 2015 with then Indiana Gov. Mike Pence, now vice president, as he signed nearly identical Right-to-Try legislation specific to their home state. That bill passed unanimously in the state legislature.
While many patients and families in positions similar to that of McLinn's support the chance to try not-yet-FDA-approved drugs and treatments, some patient groups and medical advocates are concerned that the new law could actually make itfor new drugs to receive FDA approval.