“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:
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)
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.
The proposed Medicaid changes have potential to significantly impact the Duchenne community:
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 natlawreview.com.
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.
Statements from coalition partners PPMD has been working closely with: