On the evening of December 1st, the University of Arizona’s STRIVE club hosted a speaker event called “Right to Try.” There, Christina Sandefur, VP of policy at the Goldwater Institute, delivered a talk to students on terminal patients’ right to use experimental but potentially life-saving medications. She also discussed the current policies in place that deny them that right, and shared stories about families affected by the controversy.
“Diego was just 10 years old when he was told that he was going to die,” opened Sandefur.
Diego, she explained, was a young boy who was diagnosed with a rare type of bone cancer called osteosarcoma. His parents learned that it was fatal, and the doctor said that while they could still try chemotherapy, it would be very tough on Diego, and would probably have little effect.
When Diego’s mother asked if any other treatment existed, the doctor informed her that a very effective and well-tested medication did exist, but that it was not approved by the FDA in the United States.
It was, however, available in Europe. Because the FDA was forbidding their child a chance at life, they had to move out of the country to find it.
“We’re not talking about medicine to fix your headache, we’re talking about medicine to save your life, and you are not free to take that medicine,” said Sandefur.
She explained that the FDA has a “better safe than sorry” attitude when approving drugs, implying some sort of risk threshold. And even when the system does permit treatment, it does so at a damagingly slow pace.
“The current FDA system, which has been in place since the 1960’s, takes a decade and a billion dollars to allow life-saving drugs . . . We won’t even have a cell phone that’s a few years old . . . and yet that’s what the government forces upon us. Decades old treatments,” explained Sandefur.
In her view, patients have a fundamental right to decide for themselves what level of risk is acceptable to them.
“Should the government make these decisions and decide what is an acceptable level of risk, or should you?,” asked Sandefur. “Dying patients certainly have a different benefit-risk calculus.”
“This [system] is absolutely immoral,” she explained. “This country was founded on first principles, and one of those is you own your own life.”
In response to the government’s violation of this right, Sandefur and the rest of the Goldwater Institute worked to create a “Right to Try” bill to give terminal patients the right to use experimental medication. Originally, this was a federal bill. When that was rejected, the Institute shifted focus to getting it passed in state legislatures. The bill has received bipartisan support, is now law is 24 states (including Arizona, which was the only state to have it passed by popular vote), and protects over half the US population.
Sandefur noted that the bill was vetoed in California, even though a similar right for terminal patients to go off life support and pass away was allowed.
“You have a right to die, but not to save your own life,” she observed.
While many students in attendance felt better-informed by the talk, others also felt deeply touched.
“I thought it was fantastic. This topic is very important for a lot of people and for me. It affects so many peoples’ lives,” said Casey Hoyack.
Casey’s father had a brain tumor, and qualified for participation in FDA studies on an experimental medication. These trials supplied him with medications that, although unapproved for public use, seemed to eliminate the tumor. Unfortunately, when the trials expire at the end of January, Casey’s father will no longer have access to the medication. Without continued access, he might fall back into illness.
“It’s such a nerve racking thing. We have to be proactive. He isn’t terminal and things are going well, but could be ruined. It’s scary that he doesn’t currently fall into the necessary category to continue to take this drug. We don’t want to give up on the clinical trial if it’s working,” said Hoyack.
Sandefur was excited to get the conversation started.
“That’s what so important about the Right to Try movement. It’s starting a dialogue, about whether the government is performing its proper function,” she said.
For his part, Casey was happy to join in the discussion, and took a lot away from the event.
“Coming into tonight I knew nothing about the Right to Try movement. I think the fact that there is a lot of hope in people being convinced—the fact that people see this as a human issue, not a political issue—will open up the door for them to have access to drugs that they wouldn’t normally have access to,” he explained.
Posted by J.A. Windham
on January 4, 2016. Filed under Spring 2016.
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