The Foundation for Sarcoidosis Research prioritizes the long-term care of sarcoidosis patients and supports healthcare legislation that acknowledges and protects the needs of our community. As such, we feel compelled to voice our concern when pending legislation could have a considerable negative impact on our community.

Last week, the Senate released an amended draft of the healthcare legislation that passed the House in May. Based upon the American Health Care Act (AHCA), the Senate’s Better Care Reconciliation Act (BCRA) proposes measures that could be harmful to our community. The act  jeopardizes protections for patients with preexisting conditions, as well as proposes major cuts to Medicaid, which so many patients rely on for their care and treatment.

Preexisting Conditions Protections: 

The BCRA opens the door for states to bypass covering individuals with preexisting conditions by loosening the current policies that protect them.

Essential Health Benefits would be decided by states and insurers: Under the proposed legislation, states could apply for waivers that would make them exempt from providing federally mandated “Essential Health Benefits” and allow them to make their own determination of which benefits are essential. States could choose to exclude prescription medications and costly coverage by making the definition of “essential health benefits” extremely narrow. This is especially important because the prohibition on lifetime and annual caps only applies to expenses deemed “essential.” By selectively choosing what is “essential,” insurers could avoid the lifetime and annual cap prohibition and leave these huge expenses to be shouldered solely by patients.

Obtaining a waiver will be easier: Currently under the ACA, to obtain a waiver, a state must prove that the coverage they will provide in replacement of the ACA’s coverage will be just as comprehensive and affordable. With the new legislation, this will not be the case- obtaining a waiver will no longer depend on proving the quality of coverage that will be offered, but instead simply proving that the state won’t increase the federal deficit. On top of all of that, they’ve set an expiration date for the Essential Health Benefits Requirement at the end of 2019, leaving what “basic health coverage” could look like very open-ended at that time.

What this means for sarc patients: While insurers will not be allowed to charge higher premiums for those with preexisting conditions, they could now deny coverage for medically-necessary treatments which had previously been covered under the ACA. Prescriptions medications, infusion treatments, critical tests and procedures could be deemed “unessential” and the expenses for all of these could fall on patients. As any sarc patient knows, these expenses can rack up thousands of dollars- in just a month.

Medicaid Cuts: 

Proposed cuts of hundreds of billions of Medicaid funding means that even the coverage Medicaid does provide could become a weaker version provided to less people in need.

The BCRA would cut billions of dollars from Medicaid programs, which millions of Americans- especially those affected by rare diseases- rely on for healthcare. The Congressional Budget Office estimated the cuts to reach between $700-860 billion by 2026. The Medicaid cuts will lead force cuts to community- and home-based programs that so many patients rely on for specialized treatment and services. The BCRA will also allow states to impose a work requirement for Medicaid, potentially making it inaccessible to many. Budget cuts also will force states to limit benefits and reduce eligibility, causing many ill individuals to lose coverage altogether.

Under the BCRA, states can choose to impose per capita caps, or go one step further and take a “block grant.” A block grant means the state gets a set amount of money to use over a 10 year period, with adjustments only for inflation and not for things like population growth in that state or economic hardship resulting from a natural disaster or recession. This would also lead to people in certain states being left without necessary medical coverage. Not only will Medicaid face cuts, but the BCRA will also stop the expansion of Medicaid that resulted from the Affordable Care Act. The ACA’s expansion will be completely phased out by 2024, contributing greatly to the 49 million Americans- again estimated by the CBO- who would be without coverage by 2026 if the BCRA becomes law. Read the CBO’s analysis of the BCRA.

In addition to medicaid cuts, the act will repeal tax credits given to small employers for providing health insurance to employees and modify tax credits that assist with premiums for those applying for non-group insurance.

What this means for sarc patients: Any patient who relies on Medicaid could experience severe cuts in their coverage and be left to shoulder much of their annual medical expenses on their own. Some individuals simply won’t be covered by Medicaid anymore, as the program is expected to shift to cover only “low-risk” groups such as young and healthy individuals. Those who are still covered may face limitations from per capita caps or the state’s plan of budgeting the funding.

To learn more about how the BCRA will affect rare disease patients and how you can get involved, check out NORD’s Rare Action Network and their resources to make it easy for patients to stay informed on ongoing healthcare reform and stand up to protect their coverage.

Share:Tweet about this on TwitterShare on FacebookShare on LinkedInPin on PinterestEmail this to someonePrint this page