Viewpoint: President Trump gives hope to terminally ill patients
By Mary Grosenick, Hudson
At 5 years old, Jordan McLinn had dreams of becoming a firefighter. Those hopes were dashed when he was diagnosed with a muscle-weakening disorder called Duchenne Muscular Dystrophy (DMD).
The condition proves fatal around age 25 and most children are wheelchair-bound by age 12. The Indiana boy's dream was renewed when President Donald J. Trump recently signed the
"Right to Try Act" opening the door for terminally ill Americans to gain access to potentially life- saving drugs stuck in the FDA approval process.
WHAT IS THE RIGHT TO TRY ACT?
During the 2016 presidential campaign, Trump made a promise to help terminally ill patients get access to experimental or yet-to-be-approved drugs and treatments and reiterated that same promise during his State of the Union speech.
In January, Trump said "Patients with terminal conditions should have access to experimental treatments that could potentially save their lives.
"It is time for the Congress to give these wonderful Americans the 'Right to Try.'"
Trump signing the bill into law checks off another promise kept and provides a last hope for Americans fighting for their very lives. The Republican-led legislation was sponsored by Wisconsin Sen. Ron Johnson and cleared the U.S. House mostly along party lines (250-169) in late May.
The president's persistence broke the controversy and gridlock that prevented this long overdue change to become a reality. The federal law opens new doors and unifies the nation under one policy:
• Allows terminally ill patients access to medications that cleared Phase 1 of the FDA's process.
• Gives terminally ill people access to drugs years before they would clear FDA hurdles.
• Allows your doctor to prescribe "investigational" drugs not yet approved by the FDA.
• Restores choice to everyday citizens rather than government regulations making life or death decisions for you.
Considering that new and emerging drugs and treatments are the final hope of people facing
death, one would think the Right to Try Act would pass unanimously. It did not.
DEMOCRATS OPPOSED RIGHT TO TRY ACT
Despite the U.S. Senate passing the Right to Try Act by unanimous consent in 2017, House
Democrats vehemently opposed the legislation. Changes were made in early March to add language that narrowed the scope to "reasonable likelihood of death within months" or "disease/condition that would likely to lead to severely premature death."
Despite efforts to placate House Democrats, Minority Leader Nancy Pelosi pressed for another "resist" Trump obstruction and the Democrats took away the hope of dying Americans by voting the legislation down.
From March until mid-May, Trump renewed his campaign promise efforts with the help of patient advocacy groups such Freedom Partners and Americans for Prosperity.
Indiana's Jordan McLinn had become a significant face for the Right to Try movement. Led by the President, Republicans took Democrats to task.
According to a senior Congressional Republican aide, "Are Democrats really going to deny critically ill patients every opportunity to find treatment?" "Are they going to go against their own constituents?"
Ranking House Democrat Rep. Pelosi hid behind special interests and a spokesperson before voting no.
Fortunately for suffering Americans, President Trump shamed enough Democrats to gain passage by a two-thirds vote in the House.
WHY RIGHT TO TRY ACT MATTERS
With the young Jordan McLinn by President Trump's side, he signed the measure into law and received a warm hug. The President presented the youngster with a commemorative signing pen as a symbol that he and other ailing Americans have hope.
Jordan's mother identified a drug that is being developed that could stave off his condition. The little boy has been named an honorary firefighter at two local fire houses where he helps out.
According to Mrs. McLinn, "He's still going to have muscle weakness. He's not going to be in the NFL — that's ok — but he's going to have a longer life."