June 2, 2018
The New York Post called Right to Try a “bipartisan win for a basic freedom.” Vice President Mike Pence said that Right to Try “is how Congress should work to advance the interests of the American people.” And President Donald Trump proclaimed that Right to Try is an “incredible thing” that offers a “new cause for hope” to thousands of terminally ill patients.
Indeed it will. With the president’s signing of Right to Try legislation on Wednesday, federal law now protects terminally ill patients’ right to try medicines that have not yet been approved by the federal government for market. The Goldwater Institute crafted the policy and led the nationwide effort to ensure its passage in 40 states and at the federal level. Goldwater Institute Executive Vice President Christina Sandefur writes why this policy is so critical:
“The cruel reality is that in the United States, thousands of people every year suffer and die while treatments that could help them are awaiting the outcome of a slow, bureaucratic federal process—a process that takes, on average, 14 years before potentially lifesaving treatments can receive final government approval for sale.
“The Right to Try movement was born to change that. Right to Try is a declaration that in our free country, people diagnosed with a terminal illness should be able to decide for themselves – in consultation with their doctors – whether to try investigational medicines that could prolong or even save their lives. Americans shouldn’t be forced to travel to other countries to get the lifesaving treatments they need. It’s a basic constitutional right – a basic human right – to fight for one’s life.”
Countless patients and their families have advocated for the Right to Try. Some of them were on hand at the White House as the president signed the bill into law. In a new article, Goldwater Institute Communications Manager Jennifer Tiedemann writes about their stories.
Colorado man Mike Cimbura was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in 2015. His children Ellie and Aiden recounted their father’s struggle in an op-ed for the Denver Post in late 2016: “Once very athletic, he can no longer dress himself, brush his teeth, breathe without the use of a machine, speak without the help of a communication device, shower on his own, eat a meal, walk, give us hugs or high-fives, or tell us he’s proud of us or that he loves us in his own voice.” Ellie and Aiden urged the federal government to take up the cause of Right to Try.
U.S. Navy veteran Matt Bellina was also diagnosed with ALS. He got his definitive diagnosis in 2014, but at that point, he had been showing symptoms of the disease for about eight years. That timing meant his illness had progressed too far for one FDA-approved ALS drug and not far enough for the other. Last year, Matt finally had one drug company (out of the almost 20 he approached) grant his “compassionate use” request to take an investigational drug, but he believes that patients like him shouldn’t have to jump through hoops to try to improve their conditions. That’s why Right to Try is so important to him: “If I’m not going to make it anyway, why shouldn’t I get to try [experimental drugs]?”
And there’s 9-year-old Jordan McLinn who has fatal Duchenne muscular dystrophy. He dreams of growing up to be a firefighter, and he has devoted his young life to helping give patients like him the right to try experimental treatments to improve and extend their lives. After the White House signing ceremony, Jordan McLinn’s mother Laura offered a message of thanks to the supporters of the Goldwater Institute.
“None of this would have ever been possible today had there not been an idea started at the Goldwater Institute,” she said. “And I just want to take the time today to say thank you from the McLinn family. It does not go unnoticed, and it means the world to us.”
Liberty in the News
Just like it’s a bad idea to let a fox guard a henhouse, it’s also a problem to let professionals regulate industries when they have a self interest in the result. In a new article, Byron Schlomach of the 1889 Institute writes about the baked-in corruption of individuals tasked with judging their own cause on boards and commissions.
Every right in the Constitution is at its core a property right. Sadly, the present-day conception of property rights has deviated substantially from our Founders’ vision. Christina Sandefur talks about the issue on The Pursuit, a new Cato Institute podcast about government action and individual liberty.
Is making artificial snow with recycled water a “public nuisance”? The Hopi Tribe seems to think so, and they filed a lawsuit against the Snowbowl, a company in Flagstaff that runs a ski slope and engages in the legal and safe practice. The problem is, nobody knows what a public nuisance is. Goldwater Institute Vice President for Litigation Timothy Sandefur explains why that’s a problem.