Marylanders with rare diseases can now seek cutting-edge personalized treatments after Maryland today joined a growing movement of states in adopting the Goldwater Institute’s landmark Right to Try for Individualized Treatments. Sponsored by Delegate Matt Morgan and signed into law by Governor Wes Moore, the reform, which passed both Houses of the Maryland General Assembly with unanimous support, expands Goldwater’s original Right to Try law to potentially lifesaving treatments that are made specifically for them.
About 30 million Americans suffer from rare diseases for which there are no treatments or cures, and half of those are children. Maryland—the fourth state in which Goldwater has enacted this Right to Try expansion—is home to countless people who are searching for hope. There are innovative treatments that can help, but they’re tailor-made for one individual, based on their genetics, and by definition cannot go through outdated FDA approval processes in a timely manner.
That’s where the Right to Try comes in. This movement to put patients first is truly a nonpartisan effort, with legislators working together to solve a problem that is confronting Americans of all backgrounds.
“No American should have to ask the government for permission to try to save their own life,” said Victor Riches, President and CEO of the Goldwater Institute. “We’re thrilled Maryland has joined this growing movement to put patients first by ensuring them access to specialized treatments designed specifically for their unique needs.”
The Goldwater Institute is the nationwide leader in safeguarding the right to try to save one’s own life. Goldwater passed our original Right to Try reform in more than 40 states and at the federal level to protect terminally ill patients’ right to access investigational treatments advancing through the FDA’s approval process. That reform is saving lives in Maryland and around the country, with pharmaceutical companies using Right to Try to treat entire groups of patients in promising new ways. That’s why the Right to Try for Individualized Treatments (also known as Right to Try 2.0), which passed the Maryland General Assembly unanimously thanks to a groundswell of support from patient advocates, is the natural next step.
Maryland native Hannah Lowe is the mother of a young boy who is suffering from a rare and fatal form of childhood muscular dystrophy. She and her family know firsthand that time is of the essence for many rare disease treatments, and that parents deserve the right to pursue all available options on behalf of their children.
“Under the current regulatory framework, the process for getting new treatments into patients is long, and this is time that we do not have,” Hannah told Maryland lawmakers. “We are not asking for a handout. We are asking for laws…that would allow medical treatments to be developed faster with appropriate safety and efficacy measures, and under physician care and guidance for people for whom there are no treatments and no cures.”
The Riley family of Arizona, whose infant daughter Keira was diagnosed with a rare and fatal genetic brain disease, also exemplifies why Right to Try 2.0 is so urgently needed. A specialized type of gene therapy could help baby Keira, but it wasn’t available in the U.S. due to FDA restrictions, so the Rileys had to move to Italy to save her life.
“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,” Keira’s mom, Kendra, testified before Arizona became the first state to enact Right to Try 2.0.
Maryland and Arizona aren’t alone in pursuing this important reform. Goldwater passed Right to Try 2.0 in Nevada last year and in Mississippi last month, and more states are expected to follow suit in the coming years.
As the Washington Times Editorial Board put it: “Every American who is facing death from a rare disease deserves the opportunity to pursue whatever cutting-edge technology is available.”
Every American deserves the Right to Try.
Read more Right to Try success stories here. Find out more about Right to Try 2.0 here.
Heather Curry is the Director of Strategic Engagement at the Goldwater Institute.
