ACTION ALERT: ­Immediate Action Needed – Revised AHCA Bill Threatens Duchenne Community’s Access to Health Care Coverage

The current version of American Health Care Act (AHCA) directly threatens essential health benefits (EHBs), Medicaid eligibility and funding, and vital health care protections for our Duchenne community. 


I wish there was a way to sugar coat this. Find the silver lining. See the glass as half full. But there isn’t. 


If you are a member of the Duchenne community then the current proposed healthcare legislation being considered by Congress strips away potential health care coverage and eligibility — and if you are eligible — makes it legal to charge you more for your health insurance than someone without Duchenne or another chronic health condition. In addition, essential health benefits are at risk. Annual and lifetime benefit caps apply to more services — and Medicaid funding is slashed threatening eligibility and coverage.


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. This proposed bill does not accomplish this. Following the introduction of the March version of the AHCA, we alerted you to elements of the proposal that conflicted with our communitys healthcare priorities and urged you to implore lawmakers to fight to protect critical healthcare benefits. Our communitys outreach was swift and strong.

Our Duchenne community’s healthcare priorities 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 
  • Ensuring access to essential health benefits
Following the failure of the passage of the March proposal, a new version of the American Health Care Act has been drafted. In large part this bill was negotiated by a small group of congressional members behind closed doors and without the input of healthcare experts. The proposed legislation – the MacArthur Amendment introduced on Tuesday – contains elements that are a direct threat to our Duchenne community’s ability to access health care coverage. 
What does the new amendment do? 

  • The MacArthur Amendment will have even more devastating impacts on people with disabilities and chronic conditions than previous versions of the AHCA.
  • The Amendment will allow states to opt out of important protections that are specifically in place to help people with disabilities and chronic conditions.
  • States can choose to opt out of the essential health benefits requirements. This will lead to insurance that does not cover many products and services that people with disabilities and chronic conditions need. It also means that fewer products and services will apply to the lifetime and annual benefits limits and the maximum out-of-pocket cost limit.
  • They can also opt out the requirement that insurers charge the same premium for people with disabilities and chronic conditions as they do for healthier people. If any person is without health insurance for 63 days, they can be medically underwritten for a year. This will mean that premiums will likely increase for people with high-cost health care needs.
  • The end result is that people with chronic conditions will pay more for less benefit. This is unacceptable.


Earlier Provisions of the AHCA that still remain include significant cuts to Medicaid:

The proposed cuts to Medicaid will harm the nation’s most vulnerable populations. For example, by reducing by hundreds of billions of dollars the Medicaid payments to the states, states could cut enrollment, limit benefits, or reduce payment rates to providers and plans. This could mean that fewer patients with disabilities or low-income patients will have access to health insurance through Medicaid or to benefits offered by Medicaid.

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