Washington, D.C., May 4, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the passage of the American Health Care Act:
“Today the House of Representatives passed American Health Care Act (AHCA). We are very disappointed the House pursued and passed this legislation, and we will continue to do everything we can to prevent this legislation as it is currently written from being enacted.
The AHCA jeopardizes the health and wellbeing of rare disease patients across the country. The bill allows states to opt-out of critical pre-existing conditions protections, including the prohibition on annual and lifetime caps and community rating.
Community rating prohibits insurers from charging individuals higher premiums based on health status. Without a community rating, pre-existing conditions protections are rendered moot, as insurance companies will once again be capable of charging higher premiums to those with pre-existing health conditions. Community rating is essential to maintaining access to quality and affordable healthcare coverage for rare disease patients.
In addition, the bill allows states to set their own Essential Health Benefits (EHB) categories rather than complying with the ten Federal EHB categories. Both the prohibition on annual and lifetime caps as well as the maximum out-of-pocket caps apply only to the EHB categories. If the EHBs are turned over to states, states could choose to allow insurers to once again set annual and lifetime caps on medically necessary services for rare disease patients by only mandating coverage of certain EHBs. States could also allow insurers to set prohibitive cost-sharing amounts without any out of pocket cap. We strongly oppose this measure as it is unacceptable to once again expose rare disease patients to these draconian caps and cost-sharing requirements.
Under the AHCA, federal funding of Medicaid would be substantially weakened by per capita caps and block grants, resulting in states potentially delaying or outright refusing coverage for necessary care under Medicaid. Rare disease patients seeking expanded Medicaid coverage would be turned away after 2019, and additional Federal assistance for the 1915(k) Community First Choice program would be removed. Many rare diseases are financially catastrophic with families often having no choice but to become single-income households because either an adult is sick, or a parent must stop working in order to become a sick child’s primary caregiver.
We remain unconvinced that the continuous coverage proposal will adequately incentivize healthy individuals to enter the market to stabilize premiums, or that the tax credit structure will provide enough assistance to low-income individuals with rare diseases seeking coverage.
We have said throughout this process that we are committed to assisting Congress and the Administration as they navigate ACA repeal and replace. We remain committed today to ensuring that Congress enacts legislation that improves the health and wellbeing of rare disease patients across the country. With continued dialogue and collaboration, we hope to be able to support legislation that improves the lives and wellbeing of rare disease patients.”
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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. www.rarediseases.org.
Media Contact:
Lisa Phelps
(203) 702-2872
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