Boy with muscular dystrophy steals the spotlight from President Trump
Eight-year-old Jordan McLinn, who suffers from Duchenne Muscular Dystrophy (DMD), waited patiently for the President’s attention as he signed the ‘Right to Try Act.’
President Donald Trump delivered his remarks before signing the legislation in the Eisenhower Executive Office Building’s South Court Auditorium on May 30, 2018.
The White House shared the video on its official channel on YouTube showing McLinn’s attempt to hug President Trump.
The eight-year-old boy had become the face of the ‘right to try’ campaign and inspired a federal legislation. The bill gives the terminally-ill the right to try experimental drugs.
McLinn, who hails from Indianapolis, Indiana, left his wheelchair and stood at the President’s side. When Trump was passing out signing pens to the participants on the dais, the boy went in for a hug repeatedly.
It was only after several attempts that the President rewarded him with a hug and a kiss on his forehead. He then gave McLinn the pen he had just used to sign.
The act was passed three years ago in Indiana and became a federal legislation after a lobbying campaign led by Laura, the boy’s mother.
McLinn stole the show at the signing event with the President even commenting on his “beautiful” hair.
“If I looked like that, I would have been president 10 years earlier. If I had that face, if I had that head of hair, I would have been president so long ago.”
Donald Trump, YouTube, May 30, 2018.
The little boy suffers from DMD, a genetic degenerative disease that confines the afflicted to a wheelchair and with an average life expectancy of 25 years.
Speaking to CBS News, Laura said, “To see it just finally come to the finish line was just a huge accomplishment.”
The mother-son duo has been at the forefront of the campaign to pass the bill allowing terminally-ill patients to gain access to drugs not fully approved by the FDA.
FDA dictates that new drugs must undergo three phases of clinical trials before becoming commercially available, which usually takes years.
The bill allows doctors to administer drugs that have cleared just the first phase.
The “Right to Try” bill was first signed into law in their home state of Indiana in 2015, by the then-Governor Mike Pence, the current Vice President, who was also present at the ceremony.
The family learned that a federal law gave patients the approval they needed to access the drugs as the FDA is a federal agency. Laura is now confident that the new law will benefit many.
However, the bill is not without controversy. Those who oppose say it is risky and does not provide better access to drugs. Alison Bateman-House, an Assistant Professor of Medical Ethics, termed the bill “empty symbolism” and feared that it gave false hope.
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