Rare Disease Report

NORD Critical of Republicans' Health Care Act

MARCH 08, 2017
RDR Staff
Earlier this week, House Republicans released the first draft of the American Health Care Act (AHCA) – their replacement for the Affordable Care Act (aka Obamacare).
The bill, in its current state, aims to repeal many provisions in Obamacare through budgetary reconciliation, and replace them with alternative provisions.
In a press release, NORD noted that there are many provisions in the AHCA that should keep rare disease patients protected while other provisions are a concern.
  • Insurance protections for patients with pre-existing conditions remain, such as guaranteed issue and renewal of coverage, prohibition on discriminatory benefit exclusions, and mandated community rating. 
  • The ban on annual and lifetime limits remains, and maximum out-of-pocket caps will continue to protect patients from undue financial burdens. 
  • The AHCA also allows children to stay on their parents’ plan until the age of 26 years.
  • Anti-discrimination provisions from the ACA remain, as well as the Concurrent Care for Children provision that allows children in hospice to be eligible to receive life-saving therapies.
  • Additional changes to Medicaid may jeopardize the health and wellbeing of Medicaid beneficiaries with rare diseases. Further, NORD is concerned about the effect instituting per capita cap allotments may have on medically necessary care for individuals with rare diseases. Individuals with rare diseases are already facing Medicaid access challenges in many states, and we believe cutting Federal contributions may worsen the situation. 
  • The AHCA maintains Medicaid expansion until 2020, but the proposal no longer may or may not allow for additional enrollment under Medicaid expansion after 2019.
  • The AHCA also removes additional Federal assistance for the 1915(k) Community First Choice program after 2019. This program allows for state Medicaid programs to cover patients wishing to receive skilled-nursing care in the comfort of their own home rather than in a nursing facility.
  • The continuous coverage penalty of an additional 30% of premiums does not appear to accommodate any valid reasons for going uninsured for more than 63 days.
  • The AHCA replaces ACA subsides with age-based tax credits, a system NORD believes could overburden low-income individuals with rare diseases and their families.
NORD concluded that “We do not support the American Health Care Act at this time, but 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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