EDITORIAL: Arizona’s ‘Right to Try 2.0’ – Washington Times

OPINION:

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 bills 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. Trumps signature bill allowing terminally ill Arizonians the ability to seek individualized treatments something excluded from the original bill. Its 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, Olivias 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 hasnt 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.

Shes doing things that we never got to see Livvy do, her mother Kendra said, trying to promote her story. Shes running, shes climbing, shes having full conversations with us. Shes enrolled in preschool for the fall. These are really great, everyday things for normal parents, but for us, theyre huge, huge milestones that we didnt get to see with Livvy. So its really, really heartwarming to see that happen for Keira. And its all because of this treatment.

The Rileys, along with the Goldwater Institute, were the key advocates behind Arizonas state law, the Right to Try for Individualized Treatments Reform, and are urging other states in the nation to pass similar bills.

Although Arizonas legislation was passed on a bipartisan basis, Democratic critics of Mr. Trumps 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 shouldnt 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. Its 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 whats being dubbed Right to Try 2.0. Other states should follow suit.

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EDITORIAL: Arizona's 'Right to Try 2.0' - Washington Times