Yesterday, members of the Senate released draft text of their much awaited legislation called the Better Care Reconciliation Act (“Better Care Act”) of 2017. As you’ll recall from previous updates (links here and here), the Senate has been working to put together its own legislation to modify key parts of the Patient Protection and Affordable Care Act (ACA) in response to the American Health Care Act (AHCA) passed by the House of Representatives in May.
As expected, the Senate’s legislation differs from the House AHCA in several key areas, making some improvements to protections for SMA patients’ access to health care coverage. Specifically, the bill will maintain protections for patients with pre-existing conditions to ensure plans cannot deny coverage or charge higher rates based on a previously diagnosed condition. Children with medically complex disabilities, like those with SMA, will also be exempt from funding limits on coverage for treatment and services provided under Medicaid. However, the Better Care Act also removes requirements that insurers cover certain essential services and prescription drugs, which could make it more difficult for people with SMA to receive the care and treatment they need and deserve.
Cure SMA is pleased to see some of the critically important concerns expressed by our patient community and others are reflected in the Senate’s legislation. However, additional work is needed to ensure all SMA patients are afforded the same unobstructed access to care.
Still included are significant cuts to Medicaid that could impact access to health care coverage and services, particularly for adults and low-income beneficiaries, and reduce benefits and services provided through Medicaid even for covered children and individuals. Beginning in 2021, Medicaid funding will be reduced, eliminating the expansion by 2024.
Next week, the Senate will proceed with consideration of the legislation and Members will have the opportunity to make additional changes before voting on passage of the bill, which is expected prior to the July 4th holiday.
Senators still need to hear from you! In the next few days, make your voice heard –contact your Senators and remind them to consider families and individuals affected by SMA when they debate and vote on the Better Care Act.
- Find your Senator online and contact his or her office.
- Using the talking points below, you can deliver your message.
- You can also reach out to your Member through Twitter. Either ask the office for the Member’s Twitter handle or find it using the Twitter search function.
Not sure what to say? Here are suggested talking points for your Member of Congress:
My name is ___________ and I live in town/city/state.
- I/My child/family member [NAME] have/has spinal muscular atrophy (SMA). This is a neurological disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe.
- I am calling to ask that Senator LAST NAME consider the needs of families and children like ours when debating legislative changes to the ACA under the Better Care Act.
- I appreciate that the Better Care Act ensures patients with pre-existing conditions have equal access to coverage and provides protection for children with SMA who are enrolled in Medicaid.
- However, the Better Care Act also removes requirements that insurers cover certain essential services and prescription drugs, which could make it more difficult for people with SMA to receive the care and treatment they need and deserve.
- Significant cuts to Medicaid programs included in the Better Care Act could significantly impact access to critically important care services for SMA patients and their families.
- Please remember families and children with SMA when debating the Better Care Act – you may be saving a life!
Tweet Your Thoughts:
- @Senator protect SMA patients’ access to care and treatment #BetterCare! #protectourcare
- @Senator I/my son/daughter have/has SMA, please #protectourcare #BetterCare!