In 2018, former President Donald Trump signed into law a bill that gave terminally ill patients — who had exhausted all other therapies and could not enroll in a clinical trial — the right to try experimental drugs not yet approved by the U.S. Food and Drug Administration. The bill’s passage gave thousands of terminally ill Americans the help, hope and fighting chance they could be cured.
Last week, Arizona Gov. Doug Ducey expanded on Mr. Trump’s signature bill allowing terminally ill Arizonians the ability to seek individualized treatments — something excluded from the original bill. It’s solid legislation that should be replicated on the national stage.
The Arizona bill was prompted by the Riley family, whose 1-year-old daughter Olivia was diagnosed with an extremely rare and fatal brain disease that robbed her of the ability to walk and talk within 90 days of her symptom onset. Olivia, now three, is currently in hospice care and is unlikely to survive her childhood.
Sadly, Olivia’s sister Keira was born with the same rare disease. A newborn at the time of her diagnosis, Keira had not yet experienced any symptoms. Unlike Olivia, Keira had treatment options — personalized gene therapy, which could modify her DNA so her body could function normally. The treatment option was not available to her in the U.S. — because it hasn’t been FDA approved — so the Rileys had to raise hundreds of thousands of dollars to move to Italy, where Keira could seek treatment.
Today, Keira is a healthy 2-year-old toddler.
“She’s doing things that we never got to see Livvy do,” her mother Kendra said, trying to promote her story. “She’s running, she’s climbing, she’s having full conversations with us. She’s enrolled in preschool for the fall. These are really great, everyday things for normal parents, but for us, they’re huge, huge milestones that we didn’t get to see with Livvy. So it’s really, really heartwarming to see that happen for Keira. And it’s all because of this treatment.”
The Rileys, along with the Goldwater Institute, were the key advocates behind Arizona’s state law, the “Right to Try for Individualized Treatments Reform,” and are urging other states in the nation to pass similar bills.
Although Arizona’s legislation was passed on a bipartisan basis, Democratic critics of Mr. Trump’s 2018 Right to Try legislation said the act gives false hope to patients and has the potential to worsen their condition.
This is absolute nonsense. Every American who is facing death from a rare disease deserves the opportunity to pursue whatever cutting-edge technology is available — and shouldn’t have to travel overseas to do so.
Every family who has a loved one struggling with terminal illness deserves the right to try even if the therapy fails. It’s unconscionable that bureaucrats in Washington or in the state legislature would deny anyone potentially life-saving treatments.
Arizona became the first state in the nation to pass what’s being dubbed “Right to Try 2.0.” Other states should follow suit.
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