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Mullin Introduces Bill to Ensure Rare Disease Parity in Accessing Medically Necessary Care in Medicare and Medicaid

Congressman Markwayne Mullin (OK-02) joined Reps. Doris Matsui (CA-06), Mike Thompson (CA-05), and Mike Kelly (PA-16) this week in introducing the Access to Rare Indications Act. This legislation would allow patients suffering from rare diseases, and relying on Medicare part D, to access coverage for potentially lifesaving, off-label treatment that they would not otherwise have access to. Specifically, it ensures rare disease parity in accessing medically necessary care under Medicare and Medicaid through aligning the definition of “medically accepted use” for rare conditions with sources likely included in the standard of care. Further, this bill would also create a private payer expedited review for rare conditions.

“Rare conditions are labeled ‘rare’ for that very reason – that there are indeed so few patients with these conditions, that as a result they are forced to seek alternative treatments aside from those deemed ‘standard.” Mullin said. “Every American deserves the right to quality care, especially those walking a road seldom traveled.”

“Access to the best medical care is crucial for patients living with rare and ultra-rare diseases, and too often these patients cannot get the evidence-based care they need,” Matsui said. “The community of rare patients deserve access to medically necessary treatments, the same way patients with more common conditions are covered by their health insurers. Our current system for determining coverage of certain drugs is limited when it comes to our rare diseases. That’s why I introduced this bill to ensure that rare and ultra-rare patients are no longer denied access to the care prescribed by their doctors.”

“Constituents have told me that expanding access to treatment for rare diseases is going to make a big difference for patients in our district and nationwide,” Thompson said. “That’s why I’m proud to be a lead coauthor of the Access to Rare Indications Act that will improve access to treatment and lower costs for patients living with rare disease.”

“Modern medicine has the potential to address many of the most serious diseases we face, but too often people with rare and ultra-rare diseases don’t have the opportunity to benefit from these new cures,” Kelly said. “In some instances there simply aren’t enough patients with a rare disease to run a full clinical trial. That’s why we need to empower doctors to make the best decision for their patients, using all the clinical data which is currently available. The Access to Rare Indications Act will do just this, and guarantees patients have every opportunity to access life-saving cures in a way that works for them.”

“Being a part of the TSC Alliance wasn’t something I had ever envisioned for myself. But in 2013, when our daughter Madilyn was diagnosed with tuberous sclerosis complex (TSC), I knew I had to get involved,” Heather Lens, Chair of the TSC Alliance of Oklahoma/Arkansas, said. “TSC has manifested itself in our daughter’s brain, skin, heart, and kidneys. In 2015 our daughter had brain surgery to stop the hundreds of seizures she had weekly. It was a devastating time in our lives. Thankfully I have found healing during her journey by volunteering with the TSC in Oklahoma, where I have personally witnessed several parents crying out for help as they fought to get life-saving medication for their loved ones. It is the worst feeling as a parent to know what your loved one needs, only to be told it doesn’t matter because of insurance red tape and policies. Our community deserves to be able to access life-changing medications. The Access to Rare Indications Act will give caregivers and parents peace of mind knowing we won’t have to spend hours on the phone fighting for our loved ones to have their basic needs met. It means we can sleep better at night, knowing we won’t have to go without the medicine that gives our family members the best quality of life.”

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