ACTION ALERT: Urge Congress to Protect Duchenne Community's Healthcare Priorities

Action Alert

This week marks a big moment in the ongoing healthcare debate. The House votes on the American Healthcare Act on Thursday.

The bill includes many provisions we advocated for to be maintained from ACA, however, 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.

Take action below to help make our voices heard about why these provisions matter to our community. 


  • Your Representative


*Required fields


Protect Healthcare Priorities for Rare Diseases like Duchenne

Dear [Decision Maker],

As Congress moves to vote on the American Healthcare Act, I urge you guarantee that I, and others like me, will continue to have access to equal or better coverage.

We are encouraged by the pieces preserved from ACA (not repealed by proposed bills):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

There remains concerns about the following issues that potentially can be impacted by the bill before you:

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

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

Also of deep concern is H.R. 1313, Preserving Employee Wellness Programs Act which could potentially be wrapped into the AHCA bill. . On March 8,, 2017, the House Committee on Education and the Workforce approved the 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.
This bill which could potentially unfairly impact rare disease families like ours. Please protect our families and ensure this type of discrimination is not passed or included in a final healthcare package.

These issues are critical to our community and all those impacted by a rare disease.

Please ensure communities like ours are protected. Thank you.

[Your Name]
[Your Address]
[City, State ZIP]
[Your Email]