Adorable 9-year old boy tries multiple times to get a hug from Trump, eventually succeeds in getting a hug and a kiss
Jordan McLinn suffers from a fatal disease and become the nationwide face of the right-to-try campaign due to his condition
On Wednesday, an eight-year-old boy who became the face of the "Right-to-Try" movement seeking federal legislation giving terminally-ill patients the license to try experimental drugs, stole the show at the bill signing event.
Jordan McLinn, who hails from Indianapolis, Indiana, stood beside President Trump as he inked his name on the document. In a touching moment caught on camera, the young lad went in to hug the president after he signed the bill but was not noticed by the president. When Trump became aware of the kid's attempts, he rewarded him with an embrace and a kiss on the forehead.
The act was passed three years ago after a lobbying campaign in Indiana, led by the boy's mother, Laura, who was also present at the event. President Trump gave the kid the pen he used to sign the legislation.
Trump gave McLinn a special acknowledgment as he delivered his remarks in the Eisenhower Executive Office Building's South Court Auditorium. Commenting on McLinn's "beautiful" hair, the president joked: "If I looked like that, I would have been president 10 years earlier."
Addressing the audience that included a number of lawmakers who were instrumental in the bill's signing: "If I had that face. If I had that head of hair, I would have been president so long ago. That's great."
Little Jordan McClinn suffers from a fatal disease called Duchenne Muscular Dystrophy (DMD). The condition typically confines the victim to a wheelchair by the age of 12 and claims their lives by the age of 25.
When Jordan turned five three years ago in 2015, his mother Laura first heard about the Right-to-Try law. Back then, Laura brought Jordan to the statehouse in Indiana and urged state lawmakers to pass the Right-to-Try bill. Jordan did not qualify for a clinical trial at the time.
Vice President Mike Pence, who was then the governor of Indiana, signed the bill in 2015 with Jordan sitting beside him. However, to the family's disappointment, they found that it takes a federal law to allow patients to access experimental drugs that are not approved by the Food and Drug Administration (FDA), which is a federal agency.
In March, Laura released a video for House Republicans in which she claimed that Jordan made it into a clinical trial and started treatment with a drug that doctors believe is slowing the progress of the disease. Again, in a promotional video for Majority Leader Kevin McCarthy, Laura exclaimed: "I'm pretty excited that there's finally going to be a vote."
Great honor to welcome these heroic families to the Vice President’s office today right after @POTUS signed #RightToTry into law. Amid hardship, these families courageously worked to make more medicines available to countless Americans in the years ahead. Job well done! pic.twitter.com/qgWaLTFvzc— Vice President Mike Pence (@VP) May 30, 2018
Earlier this year, in the president's first State of the Union address, he had endorsed the Right-to-Try law that would be passed in a few months. Before a joint session, President Trump said: "Patients with terminal conditions should have access to experimental treatment immediately."
The law's passage was a major priority of Trump and Vice President Pence, as well as a number of congressional Republicans.
“Right to Try” gives the over 1 million Americans who die from a terminal illness every year a new tool to fight and make potentially lifesaving decisions about their treatment. https://t.co/wNDzAQHcrk pic.twitter.com/R7MgmLP7kB— The White House (@WhiteHouse) May 30, 2018
Surrounded by terminally ill patients and their families, the president announced: "Thousands of terminally ill Americans will finally have hope, and the fighting chance, and I think it's going to better than a chance, that they will be cured, they will be helped, and be able to be with their families for a long time, or maybe just for a longer time."
Trump also thanked lawmakers who sponsored the bill and were sitting in the audience, including Democrat Senator Joe Donnelly, who is up for re-election in Indiana.
Great to welcome Jordan McLinn back to the @WhiteHouse today. We look forward to the House passing #RightToTry this afternoon to give seriously ill patients a fighting chance. This brave young man is an inspiration to me and many others. Way to go Jordan! pic.twitter.com/RVvSbrQ2RQ— Vice President Mike Pence (@VP) May 22, 2018
The commander-in-chief extended his thanks to the Democrat for this work on the bill despite calling him "really incredible swamp person" earlier this month.
Another Democrat, who was a co-sponsor on the bill, Senator Joe Manchin of West Virginia, was also thanked by President Trump for his support. However, Manchin was not able to attend the ceremony personally as he had other commitments in West Virginia, according to his office.
That being said, most Democrats and public health groups are opposing the said bill, saying it could put patients' lives in jeopardy.
Rep. Frank Pallone Jr., the Democrat from New Jersey, a ranking member of the House Energy and Commerce Committee, said: “FDA oversight of access to experimental treatments exists for a reason — it protects patients from potential snake oil salesmen or from experimental treatments that might do more harm than good."
Some critics have said that since drug manufacturers aren't required to give unapproved medicines to patients who ask for them, the bill could give "false hopes" to many.
But supporters of the bill justified the act by saying that for terminally ill patients who have exhausted existing options, it would provide new treatment opportunities.
Energy and Commerce Committee Chairman Greg Walden, a Republican from Oregon, and health subcommittee chairman Michael Burgess, a Republican from Texas, said: "While a long time coming, today is a monumental win for patients desperately seeking the ‘right-to-try’ investigational treatments and therapies."
“With ‘right-to-try’ being the law of the land, we are confident that the Trump Administration, and FDA Commissioner [Scott] Gottlieb, will take both congressional intent and the safety of patients into consideration when implementing this important law,” they said.