NORD Leads Rare Disease Community Days of Action Campaign to Protect Healthcare Coverage

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Washington, D.C., June 20, 2017 – The National Organization for Rare Disorders (NORD), an independent nonprofit organization representing the 30 million Americans with rare diseases, has launched a nationwide campaign to urge the U.S. Senate to protect lifesaving health care for the millions of children and adults with rare diseases by opposing any legislation that would harm rare disease patients, including the American Health Care Act (AHCA). The campaign is titled “Days of Action to Protect Your Healthcare Coverage.”
Over the next two weeks, NORD will provide daily advocacy opportunities for patients and families to make their voices heard while Senators deliberate on whether or not to support billions of dollars of cuts to Medicaid and an erosion of critical patient protections. The campaign will urge Senators to protect lifesaving healthcare for the millions of children and adults with rare diseases.
This multi-channel campaign will rally advocacy organizations and patient communities to take action by telling their Senators and Governors why Medicaid and pre-existing condition protections are vitally important to their constituents. NORD, with support from its Rare Action Network™ State Ambassadors, is hosting virtual advocacy days in key states where constituents are being urged to call, email, and message their Senators and Governors on social media. The first four virtual advocacy events took place last week in Alaska, Arkansas, Iowa and South Carolina. Additional events are taking place this week in Pennsylvania, Ohio and Nevada.
In early May, the House of Representatives passed the AHCA despite concerns expressed by the patient community. The bill included over $800 billion in cuts to Medicaid that, if enacted, could cause states to delay coverage of orphan drugs, remove access to expensive specialty services, and weaken or end vital waiver programs for in-home care. In addition, the bill would open the door for insurers to discriminate against individuals with pre-existing conditions by charging higher premiums and imposing annual and lifetime caps. Specifically, the bill would allow states to apply for waivers from the federally mandated Essential Health Benefits (EHBs), to which annual and lifetime cap prohibitions are tied, and from community rating requirements for individuals that do not adhere to the continuous coverage requirement.
“We cannot go back to a time when people with pre-existing conditions could be denied coverage or forced to choose between purchasing basic necessities and affording their healthcare coverage,” said Peter Saltonstall, President and CEO of NORD. “As the Senate considers this legislation, we want to remind them of their commitment to their constituents and the American people to protect lifesaving healthcare for millions of Americans, including those who struggle every day with rare diseases.”
Earlier this year, as part of NORD’s effort to protect rare disease patients’ health care, NORD published   its “Principles for Health Coverage Reform.”  It set forth principles to which Congress and the Administration should adhere to in order to avoid harming rare disease patients in their efforts to replace the Affordable Care Act.  NORD has also issued several statements outlining its opposition to the AHCA, including a coalition letter from 120 patient advocacy organizations urging Senate leadership to protect Medicaid.

Rare disease patients, families and advocates are encouraged to learn more about how they can get involved and protect health care coverage by visiting


About the National Organization for Rare Disorders (NORD)®

The National Organization for Rare Disorders (NORD)® is the leading independent advocacy organization representing all patients and families affected by rare diseases.  NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people.  NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most.  NORD represents more than 260 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community.

Media Contact:

Lisa Phelps
(203) 702-2872
[email protected]