Advocating for Access, Affordability, and Critical Patient Protections Affordable Care Act “Repeal and Replace” Debate

The 115th Congress and the incoming administration have made it a priority to “repeal and replace” the Patient Protection and Affordable Care Act (ACA). The legislative process will be protracted, include input from multiple stakeholders, and cover far reaching parts of the healthcare system. At this uncertain time, it is important to avoid being caught up in partisan politics and the sheer scope of the overall debate. In order to ensure this process leads to meaningful patient-centered outcomes, the patient care community must rally around specific recommendations and work to sensitize legislators to the value and importance of advancing proposals that incorporate these items.  

The Message to Congress

While the ACA is not perfect, it was a step in the right direction for individuals and families impacted by chronic and costly medical conditions. As Congress considers “repealing and replacing” the ACA, any new effort must ultimately lead to another step forward and cannot be a step backward. 
  • First and foremost, do not repeal the ACA without a well-crafted and well-thought out replacement ready that has been vetted by stakeholders. 
  • Secondly, there are critical patient protections with bipartisan support that must be part of any modifications to the healthcare system. Lawmakers need to understand that the following “four pillars” are absolutely essential to patients and their families, and must be included in any relevant proposals or legislation.
    • Pillar 1: Prohibit pre-existing condition discrimination. Individuals must be able to equitably access comprehensive healthcare coverage regardless of their health status, diagnosis, and related factors.  
    • Pillar 2: Prohibit lifetime and annual caps on insurance benefits. Any individual that purchases healthcare coverage must not be able to outspend that coverage and expose themselves to additional, unaffordable fees. 
    • Pillar 3: Allow children to stay on family coverage until they are 26. Families with affected members face unique and serious financial challenges and prolonged stability is essential. 
    • Pillar 4: Limit out-of-pocket costs for patients. Enacting and preserving no- nonsense restrictions that cap out-of-pocket costs is the best way to keep coverage equitable and accessible to all. 

Take Action In 3 Easy Steps

Please contact your two Senators and your House Representative to ask them to support critical patient protections during the current healthcare reform effort.   

1. Find Your Elected Officials

  • Secure the contact information for your two Senators and one Representative by visiting and
  • Call the office and ask for the Health Legislative Assistant. You can either leave a voicemail or request their e-mail address and send them a message using the template on the next page. 
  • Politely and occasionally follow up on the request. You should have an expectation that the office will respond to your specific concerns.
  • If you would like to do more, you can request a brief meeting with the staff at your members’ local offices (the location information is on their websites). 

2. Deliver the Message

Dear _______,
My name is _________ and I am a constituent from _________. I am also an advocate for the community of individuals impacted by Marfan syndrome and related disorders. Marfan syndrome and related disorders are life-threatening conditions which cause an enlargement of the aorta which is then predisposed to dissection and rupture. 
As you and your colleagues consider healthcare reforms, please do not repeal the ACA without a well-crafted replacement prepared and discussed with stakeholders. Further, make sure any proposal maintains crucial patient protections that promote access and prevent financial hardships. Specifically, please continue to:
  • prohibit pre-existing condition discrimination
  • restrict lifetime and annual caps on benefits
  • allow young adults to stay on family coverage until they are 26
  • limit out-of-pocket costs for patients
[Add a paragraph of brief information about the medical condition you are concerned about. Tell your story.] 
Thank you for your time and your consideration of this letter. Please tell me how you have responded to my request.

3. Tell Us About Your Action

It helps our efforts when we can share stories and numbers of actions with legislators. Please complete this form and let us know how your action went.