April 18, 2022

Patients in need of lifesaving treatment received new hope in Arizona today as the state legislature became the first in the nation to pass the Goldwater Institute’s Right to Try for Individualized Treatments (Right to Try 2.0), a law that opens the door to cutting-edge treatments that are otherwise blocked by the U.S. Food and Drug Administration (FDA).

Ordinarily, new medical treatments have to be approved by the FDA before they can be made available to patients. The latest treatments are tailor-made for one individual, based on their genetics, and by definition cannot go through typical FDA processes in a timely manner. Patients, especially those with rare and ultra-rare illnesses, are either left with no options or are forced to raise hundreds of thousands of dollars and move overseas to access treatments that are not available in the United States.

Today, the Arizona House of Representatives passed the Right to Try for Individualized Treatments (SB1163) with strong bipartisan support, giving patients new hope. The law is also being considered in other states. Created by the Goldwater Institute and sponsored by Senator Nancy Barto, the Right to Try for Individualized Treatments cuts through bureaucratic red tape and protects patients’ right to access those life-saving treatments.

This is not the first time the Goldwater Institute has led the nation in putting patients first. In 2014, Colorado enacted the Goldwater Institute’s first Right to Try law, which allowed terminally ill patients to access traditional treatments which passed initial safety standards but that had not received full FDA approval. Goldwater passed the law in 40 more states and then at the federal level in 2018, saving lives across the country. However, some cutting-edge treatments are not covered under the original Right to Try despite their growing popularity and success in other parts of the world.

The Riley family in Arizona exemplifies why the Right to Try for Individualized Treatments is so desperately needed. Two of their three young daughters were diagnosed with the rare and fatal genetic brain disease Metachromatic Leukodystrophy (MLD). Because Olivia was already showing symptoms, there was little they could do. However, there was a treatment that could help their youngest—but it was only available in Milan, Italy, due to FDA restrictions. The Rileys had no choice but to raise hundreds of thousands of dollars and move overseas to access the treatment and save their daughter’s life.

Kendra Riley, along with patient advocates and the Goldwater Institute, testified before the Arizona legislature about why the Right to Try for Individualized Treatments is so desperately needed. “It brings tears to my eyes thinking of all the other special needs families out there who have always held on to hope for a chance like this. A chance at healing. A chance at a normal life—something every single one of us deserves,” Kendra said. Arizona’s legislators heard their plea and took action.

Now, the Right to Try for Individualized Treatments is awaiting Governor Doug Ducey’s signature before becoming law. The Goldwater Institute urges the Governor to sign this critical piece of legislation so no Arizona family has to go through what the Rileys did.

“The right to try to save one’s own life is one of the most precious rights of all,” said Victor Riches, President and CEO of the Goldwater Institute. “America doesn’t have to wait for the FDA to reform itself in order to put patients first. States can and should act now to protect all Americans’ fundamental right to try to save their own life.”

Read more Right to Try success stories here. You can read more about the Riley family’s story at Kendra’s blog, The Riley’s Road to Italy.

Print Friendly, PDF & Email