The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement opposing the “Graham-Cassidy” plan to repeal and replace the Affordable Care Act (ACA):
“The Senate is currently considering a proposal put forward by Senators Graham, Cassidy, Heller, and Johnson that would repeal and replace the Affordable Care Act (ACA). If passed, this plan (known as ‘Graham-Cassidy’) has the potential to jeopardize access to care for millions of individuals with rare diseases.
Once more we used our Principles for Health Coverage Reform published in February to evaluate this proposal. In doing so, we found that not only does this plan contain the same concerning aspects of the American Health Care Act (AHCA) and the Better Care Reconciliation Act (BCRA), but it also contains additional provisions that would further allow insurers to discriminate against individuals with pre-existing conditions.
Therefore, we strongly oppose this legislation, and urge Senators to join us in opposition.
First, this legislation fails to meet several of our principles by allowing states who participate within the ‘Graham-Cassidy’ plan to opt out of key insurance market protections for individuals with pre-existing conditions. By allowing states to opt out of the Essential Health Benefits (EHB) requirements, this plan would bring back annual and lifetime limits, limitless out-of-pocket costs, and wholly inadequate coverage.
In addition, ‘Graham-Cassidy’ would also allow states to opt out of community rating requirements, thus once again permitting insurers to discriminate against individuals with pre-existing conditions. By allowing insurers to charge premiums based upon health status, ‘Graham-Cassidy’ would effectively price individuals with a rare disease out of the private insurance market.
Second, ‘Graham-Cassidy’ will cut hundreds of billions of dollars of Federal funding from the Medicaid program by instituting per capita caps. Medicaid is a critical lifeline to millions of individuals with rare diseases across the United States. Rare disease patients of all ages will be devastated, as states will likely be forced to cut eligibility, coverage, and services across the entire Medicaid population to compensate for the lost funding.
Furthermore, Federal Medicaid funding, once capped, and other Federal health funding will be block granted to states. As enumerated within our Principles, ‘block granting or instituting per-capita caps can disincentivize states from covering high cost patients, adding orphan drugs to state formularies, or covering expensive but medically necessary inpatient care, outpatient care, habilitative services, and rehabilitative services.’
The block grant formula within ‘Graham-Cassidy’ also is particularly disadvantageous to individuals with rare diseases living in states that provide more comprehensive coverage to Medicaid enrollees. States in the Northeast and on the West Coast could experience a particularly impactful cut in Federal Medicaid and health spending assistance.
Third, ‘Graham-Cassidy’ 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.’ ‘Graham-Cassidy’ would phase out Medicaid expansion starting in 2020 and concluding in 2024, likely leaving many individuals with rare diseases without health insurance.
Simply put, ‘Graham-Cassidy’ includes most of the same problematic proposals from the AHCA and BCRA, in addition to several new provisions that jeopardize access to care for rare disease patients even further.
Instead of pursuing this legislation, we urge Senators to support the bi-partisan efforts ongoing within the Senate Health, Education, Labor, and Pensions (HELP) Committee. This effort holds the promise of stabilizing the private insurance market and expanding insurance options for individuals with rare diseases. We were pleased to offer our recommendations to the HELP Committee in August, and we will continue to collaboratively support their efforts.
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 passage of the bill in its current form would very likely result in millions of individuals with rare diseases losing healthcare coverage, access to orphan therapies and specialists, and protections against discriminatory insurance practices, we will continue to lead the rare disease community in opposition to the ‘Graham-Cassidy’ legislation.
We urge both Republican and Democratic Senators to stand up for the rare disease community and reject the ‘Graham-Cassidy’ proposal as written.”
