MIL-OSI USA: Rep. Kelly recognizes Rare Disease Day, co-sponsors Rare Disease Day Resolution

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Source: United States House of Representatives – Representative Mike Kelly (R-PA)

WASHINGTON, D.C. — Today, U.S. Rep. Mike Kelly (R-PA), a member of the Ways & Means Subcommittee on Health, co-sponsored a resolution recognizing today, February 29, 2024, as Rare Disease Day. More than 25,000,000 individuals in the United States are living with at least one of the more than 7,000 known rare diseases or disorders.

You can read the full resolution here.

“While doctors and industry leaders are making new lifesaving discoveries every day, too often people with rare and ultra-rare diseases don’t have the opportunity to benefit from these new cures,” Rep. Kelly said. “Today, we introduce this resolution to once again raise awareness of the needs facing Americans living with rare diseases and to advance the medical causes that support treatments and cures.”

BACKGROUND

In October 2023, Rep. Kelly co-led the Providing Realistic Opportunity To Equal and Comparable Treatment for Rare (PROTECT Rare) Act. This legislation will support patients with rare and ultra-rare diseases in getting evidence-based, medically necessary care covered by their health insurance.

Over 90% of rare diseases have no FDA-approved treatment, leaving many rare and ultra-rare disease patients facing serious and life-threatening illness to rely on off-label use of drugs approved by the FDA for more common conditions. This legislation will allow Medicare and Medicaid to use additional sources, including peer-reviewed literature, when considering whether rare disease therapies meet the standard for “medically accepted indications” to provide coverage. It will also require private payers to create an expedited review pathway for formulary exception, reconsideration, and/or appeal of any denial of coverage for a drug or biological prescribed for a patient with a rare disorder.

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