As part of our “Days of Action to Protect Your Healthcare Coverage” campaign, we want to be sure that you are up-to-date on the latest news in Washington D.C.
Right now, Majority Leader McConnell and Senate leadership are planning to move forward with a vote to repeal, and possibly replace, the Affordable Care Act (ACA) next week; possibly as early as Tuesday. There appear to be two options they are considering: either Senators will coalesce around a replacement package similar to the Better Care Reconciliation Act (BCRA), or they will try to repeal the ACA without any accompanying replacement.
Here's why both of these options are incredibly problematic for individuals with rare diseases, and would result in patients on Medicaid or private insurance to lose access to care:
If the Senate is able to move forward with a version of the BCRA, individuals with rare diseases could lose access to life-saving Medicaid, and the orphan drugs, specialty hospitals, physician specialists, and programs to provide specialized care at home that it covers. In addition, the bill could then allow states to waive the Federal Essential Health Benefits (EHBs), and allow insurers to offer non-ACA-compliant health plans. Both of these provisions would undermine critical protections for patients with pre-existing conditions.
The second option under consideration, repealing the ACA without replacing it, would be just as damaging, maybe worse. The Congressional Budget Office (CBO) tells us that 32 million people would lose insurance under this plan, and individuals with rare diseases and their families that purchase insurance on the marketplaces, or obtain coverage through Medicaid expansion, would rapidly lose their coverage.
Both of these options are unacceptable, and we need you to
remind your Senators what’s at stake.
Cutting Medicaid by $800 billion, rolling back pre-existing condition protections, and repealing without replacing would all harm rare disease patients.
Please take a moment to call (click here) or email (click here) your Senators. It only takes a moment, but it makes such a huge difference, especially for all the rare disease patients who far too often fall through the cracks or get lost in the shuffle.
Thank you for your continued support. Together we are strong.
Director of Federal Policy
National Organization for Rare Disorders