Washington, D.C., June 22, 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 regarding the release of the Senate Leadership’s Better Care Reconciliation Act of 2017 discussion draft:
"Senate Leadership today released a discussion draft of the Better Care Reconciliation Act of 2017 (BCRA), an amended version of the American Health Care Act (AHCA) that passed the House of Representatives in May. As we at NORD have with every other iteration of the AHCA, we evaluated the proposal using NORD’s Principles for Health Coverage Reform published in February.
We find that the BCRA fails to meet several of the NORD Principles, and we are therefore compelled to oppose the legislation as written. Our concerns are as follows:
First, the BCRA will cut hundreds of billions of dollars of Federal funding from the Medicaid program by instituting per capita caps and optional block grants. Medicaid is a critical lifeline to millions of individuals with rare diseases across the United States. While the Senate proposal exempts disabled children from the per capita caps, this is hardly a consolation to the millions of adults with rare diseases who rely on Medicaid for their care. In addition, children with rare diseases on Medicaid would likely be harmed, as states will likely be forced to cut eligibility, coverage, and services across the entire Medicaid population to compensate for the lost funding. State programs for Medicaid home and community-based services (HCBS) waivers (1915 waivers) may also be jeopardized due to financial constraints, despite support for innovation in this area voiced within the bill.
Second, the BCRA draft fails to meet our principle on 'maintain(ing) long-term coverage for rare disease patients in states that chose to expand eligibility under the ACA-funded Medicaid expansion.' The BCRA would phase out Medicaid expansion starting in 2020 and concluding in 2024, likely leaving many individuals with rare diseases without health insurance.
Third, the BCRA does not adhere to several of our principles relating to prohibiting discrimination against individuals with pre-existing conditions. While we are pleased that the discussion draft does not include the onerous 'waiver for community rating' provision that was included in the House bill, the draft would still bring back annual and lifetime limits and limitless out-of-pocket costs by allowing states to amend the Essential Health Benefits (EHB) through section 1332 waivers. These vital protections are tied to the Federal EHB categories, and would therefore be removed if a state opts out via a 1332 waiver.
Finally, the BCRA does nothing to incentivize healthy individuals to enter the individual market and help stabilize premiums by offsetting the cost of more expensive individuals. This fails to address our principle stating that any bill must 'adequately and effectively incentivize individuals to purchase insurance while accommodating all valid reasons for going uninsured for a period of time.'
Based on these considerations, we will actively oppose enactment of the legislation in its current form as enactment would very likely result in millions of individuals with rare diseases losing Medicaid coverage, access to orphan therapies and specialists, and protections against discriminatory insurance practices.
As the voice for the 30 million Americans with rare diseases, we are ready to work with Congress to address the issues outlined above. However, as the bill is currently written, we urge both Republican and Democratic Senators to oppose this current draft, and we will continue to lead the rare disease patient community in opposition to this proposal.”