Washington, D.C., March 8, 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 advance of today’s hearings on the American Health Care Act:
“Monday evening, House Republicans released their long-awaited Affordable Care Act (ACA) replacement package called the American Health Care Act (AHCA). This bill aims to repeal many ACA provisions through budgetary reconciliation, and replace them with alternative provisions.
On behalf of our over 260 member patient organizations, NORD put forward a set of ‘Principles for Health Coverage Reform‘ to which Congress and the Administration should adhere in order to avoid harming rare disease patients in their repeal and replace efforts.
After comparing the AHCA to our principles, we find that several key patient protections are maintained, but changes to the private insurance market and Medicaid program may jeopardize access to affordable, quality health care for rare disease patients. We look forward to working together with Congress to resolve these potential patient access issues.
We are pleased that key 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 26, and requires private insurers to maintain essential health benefits and adequate provider networks. 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. We are thankful for Congress’ recognition and support for these critical provisions.
While the AHCA adheres to several of our principles, additional changes to Medicaid may jeopardize the health and wellbeing of Medicaid beneficiaries with rare diseases. We are 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 we are concerned that the proposal no longer allows 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.
In addition to weakening Medicaid, the AHCA also makes concerning changes to the private insurance market. The continuous coverage penalty of an additional 30 percent of premiums does not appear to accommodate any valid reasons for going uninsured for more than 63 days. Furthermore, we are unconvinced that the 30 percent continuous coverage penalty will incentivize healthy individuals to enter the market, rather we foresee that many individuals that go without insurance for more than 63 days will wait until they get sick before signing up for insurance as they will have not deemed it worthwhile to pay the additional 30 percent penalty previously.
The AHCA also replaces ACA subsides with age-based tax credits, a system we feel could overburden low-income individuals with rare diseases and their families.
We are eager to work with Congress to ensure that the AHCA meets our principles for health coverage reform. The AHCA should not weaken Medicaid with per capita cap allotments, should not halt Medicaid expansion and 1915K programs in 2020, should provide an adequate incentive for purchasing insurance while accommodating valid exemptions, and should offer equitable financial assistance.
We wish to emphasize our commitment to assisting Congress and the Administration as they navigate ACA repeal and replacement. 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.”
Read about NORD’s ongoing policy work to address the coverage protections of all 30 million rare disease patients.