NORD and its Rare Action Network Advocates commend Vermont’s elected officials for prioritizing the needs of 1 in 10 Vermonters living with rare diseases; new law helps patients access the right treatment at the right time by curbing harmful utilization management practices.
MONTPELIER, VT, May 21, 2024—The National Organization for Rare Disorders (NORD) and its Rare Action Network (RAN) advocates commend Vermont for enacting step therapy reform as part of H.766, signed into law by Governor Phil Scott late yesterday evening.
Step therapy policies, also known as fail first, are used by insurance companies in an attempt to control costs by forcing patients to “fail first” on an alternative medication before accessing the medication originally prescribed by their doctor. This can cause delays to necessary care and can be harmful to patients. H.766 establishes categories of exemptions from step therapy protocols, modifies timelines within which health plans must respond to prior authorization requests, and makes responses to requests for a step therapy protocol exemption subject to the same timelines.
“NORD is thrilled that Vermont’s state officials responded to our advocacy and lawmakers worked together to help the 1-in-10 Vermonters living with rare diseases,” said Carolyn Sheridan, State Policy Manager at NORD. “Individuals living with rare disease already spend so much time on their diagnostic odyssey – often going years without answers as to what is causing their symptoms – and then struggle to find the right treatment. Thanks to this new law, fewer rare disease patients and their caregivers in Vermont will have to ‘step’ through unnecessary, burdensome and potentially harmful hoops to get the medicine their provider initially ordered. We did it – congratulations to every advocate who shared their story and helped make this progress possible.”
For months, NORD and its advocates have been urging Vermont’s elected officials to end step therapy, which wastes patients’ time and money and can pose health risks. Advocates across the state joined NORD action alerts, and last month convened at the state house calling for change to help patients in the rare disease community receive the medication they need. Throughout the legislative process, NORD sent letters to lawmakers urging them to reject amendments not in patients’ best interests.
Mary Nadon Scott, a rare disease patient who has advocated with NORD, said: “How exciting! I have really enjoyed my engagement on the advocacy front with step therapy reform. Having the opportunity to speak as a patient advocate for the Senate Hearing Committee was an incredible way to share my story and rare disease patient perspective. I know my body better than my insurance company does.”
To date, more than half of states have enacted legislation to protect patients and ensure health insurers play by a fair set of rules when requiring patients to follow step therapy requirements. An estimated 10 percent of Vermont residents are living with one or more rare medical conditions, more than half of whom are children.
Sheridan added: “Step therapy reform is just one of NORD’s policy priorities intended to improve access to care for the 30 million people living with rare disease. In the next session, we will continue to work with lawmakers in Montpelier to see other critical pieces of legislation like a bill to create a Rare Disease Advisory Council signed into law.”
