ACTION ALERT: Make Your Voice Heard on New Healthcare Proposal

“Who’s on first?”

Remember that classic Abbott & Costello routine? Well, trying to track the quickly-shifting healthcare bill has felt much like watching that routine. Complex, confusing, and exhausting. But the stakes here are no laughing matter.


We recognize that each member of our community views these issues through a unique lens. As PPMD has engaged in discussions around the national healthcare bill, we have sought the community threads that united our community through the shared lens of Duchenne. It is through this lens of benefit eligibility, healthcare utilization, and access that we have worked to ensure that our Duchenne community’s priorities have been brought forward in meetings on the Hill with key congressional leaders over the past few weeks.

Our Community's Healthcare Priorities


In February, our Duchenne community made an imprint on the Washington discussion through our PPMD Advocacy Conference. Our families who came to the Hill – as well as those who took action from your home districts - ensured that lawmakers understood our core healthcare values. As members of the Duchenne community, we urged Congress to not repeal the Patient Protection and Affordable Care Act (ACA) until there is a guarantee that we will continue to have access to equal or better coverage.

We further detailed our community’s healthcare priorities that include:

  • Ensure Meaningful & Affordable Access 

  • Ensure affordable & predictable out-of-pocket costs

  • Maintain ability for dependents to remain on guardian’s health insurance through age 26 

  • Coverage for Pre-existing Conditions 

  • Elimination of Annual & Lifetime Benefit Caps

Replacement Proposals 

On March 6, 2017, the American Healthcare Act was introduced by the House Republican leadership as two separate bills, one was introduced in the Ways & Means Committee and the other in the Energy & Commerce Committee. The ‘mark-up’ (review) of the bills has moved very swiftly and began two days later with the Congressional Budget Office providing the bill ‘score’ federal cost estimate a week later. And late last week, a vote on the floor of the House was announced for Thursday, March 23rd (216 votes will be needed to pass the bill).

The landscape is moving swiftly – and the stakes are high for our Duchenne community. It is important to know that the bills do not propose to completely repeal the Affordable Care Act (ACA). There are many elements of the ACA that remain intact. For those interested in reading more detail about the bills’ provisions and what they do and don’t do, we have compiled a list of links and resources at the end of this blog. For those simply interested in a quick snapshot of some of the issues at play that might be of most relevance to the Duchenne community, here’s the skinny:

Preserved from ACA (not repealed by proposed bills)

  • Ensuring coverage of dependents through age 26
  • Ensuring coverage of pre-existing conditions
  • A guarantee availability & renewability of coverage
  • Ensuring a cap on out-of-pocket expenses
  • Maintaining prohibition of annual and lifetime benefit caps

Significant Issues At Play

While the bill includes many provisions we advocated for to be maintained from ACA, we remain concerned about how Medicaid will be impacted for states and what that potentially does to access to healthcare. Furthermore, a recent bill requiring mandatory genetic testing in the work place may be wrapped into the overall package. 

1) Medicaid

The proposed Medicaid changes have potential to significantly impact the Duchenne community: 

  • The E&C version of the bill includes significant proposed changes to Medicaid in 2020 that could significant impact the Duchenne community with a focus on eligibility
  • Medicaid funding would transition to a per-capita cap
  • States would have authority to make presumptive eligibility determinations
  • Limit funding for those receiving funding through Medicaid expansion
  • Incentivize states to re-determine eligibility more often
  • Kaiser Family Foundation interactive map, Medicaid enrollment
  • In a meeting between lawmakers and the President late on Friday, discussions of whether this element of the bill could be negotiated were conducted and the potential of moving Medicaid to a block grant program was raised. These proposals are likely to continue to evolve over the coming days. For more information about previous Medicaid block grant proposals or predictions of how block grants would potential impact Medicaid recipients with disabilities, read the National Council on Disability, Medicaid Block Grant Program Report: Implications for Persons With Disabilities.


2) Mandatory Genetic Testing in the Workplace?

Related and likely to get pulled into the repeal of the ACA / new healthcare law is H.R. 1313, Preserving Employee Wellness Programs Act. This bill allows employers to require employees to undergo genetic testing and share such information under a workplace wellness program.

On March 8, 2017, the House Committee on Education and the Workforce approved a bill. The Committee claimed the bill would allow employers to offer employee wellness plans, help them promote a healthy workforce, and would ultimately lower health care costs.  However, employees who refuse to test could be subject to higher insurance premiums. 

Coalitions of patient advocacy organizations (including PPMD) and the world’s leading genetic authorities have opposed this bill citing that it directly contradicts that protections afforded employees under both the Americans with Disabilities Act (ADA) and the Genetic Information Non-discrimination Act (GINA).

H.R. 1313 is anticipated to be a part of the E & C considerations during the healthcare vote later this week. Learn more about this topic on

Take Action

The House is scheduled to consider these bills and vote this Thursday, March 23rd. We urge our community to once again ensure that our community’s priorities are understood as America’s healthcare is shaped over the coming days. Please contact your member of the House of Representatives.


Additional Resources

Statements from coalition partners PPMD has been working closely with:

Views: 492


You need to be a member of PPMD Community to add comments!

Join PPMD Community

Need help using this community site? Visit Ning's Help Page.



© 2022   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service