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How Will Build Back Better Help the Neuromuscular Community?
November 19, 2021 by Mark Fisher

Build Back Better (BBB). Reconciliation. Budget Bill. All of these describe a very large piece of legislation the U.S. House just passed. But what is exactly in it and how will it benefit the neuromuscular community?

Below are six key parts of the bill that will impact the NMD community the most.

1. Paid Leave
The House version of BBB creates a 4-week paid leave program. Though we had hoped for more, this new benefit will no doubt help the neuromuscular community and their loved ones. No one with an NMD or their loved one should have to choose between a job and their or their family’s health, and this portion of the bill will go a long way in helping families across the country.

2. Eliminating the Subminimum Wage 
Some who work with a disability are paid far less than the Federal minimum wage. That is both discriminatory and wrong. BBB gives $270 million to create the Competitive Integrated Employment Grants Program. This program would help shift away from the subminimum wage through a grants program and gives people living with a disability a fair shot at earning a living.

3. Medicaid Expansion
Twelve states still have not expanded Medicaid under the Affordable Care Act. This leaves many in the neuromuscular community without the crucial coverage they need. BBB takes several steps to close this gap and helps those with a NMD obtain vital health insurance.

4. Extend Tax Credits to Afford Health Insurance
In the most recent COVID-19 stimulus bill, Congress temporarily enhanced tax credits, so more people could afford health insurance when shopping on the Affordable Care Act Health Insurance Marketplaces. BBB would extend these vital tax credits until 2025, which would allow more people to access coverage.

5. Make Prescription Drugs More Affordable 
Drugs that help the neuromuscular community are usually very expensive and, unfortunately, those who utilize Medicare Part D can face large out-of-pocket costs. BBB would cap Medicare out-of-pocket costs at $2,000 per year, which would be a huge relief for many living with an NMD.

6. Expand Home and Community-based Care
BBB invests $150 billion in Medicaid home and community-based care programs, dramatically increasing Federal support to states and reducing waiting lists to access this vital care. Home-based care is proven to result in better outcomes and experiences than facility-based care, including for those with NMDs.

While the bill is not uniformly beneficial to the community (for example, the legislation limits a key incentive for the biopharmaceutical industry to repurpose drugs for rare diseases), on balance, we expect this legislation to highly benefit the NMD community.

In addition to BBB, Congress passed a bipartisan infrastructure bill, which the President signed into law. One major part of this legislation is expanding broadband internet access, which would help those who live in rural areas gain access to telehealth care.

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