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How to Advocate to Protect Access to Health Insurance

January 24, 2017
How to Advocate to Protect Access to Health Insurance

The new Congress and Trump Administration are now in place, and one of the first items on their agenda is repealing the Affordable Care Act (ACA). This action will affect tens of millions of Americans, including people with bleeding disorders. Advocacy regarding the repeal and replacement of the ACA will be the centerpiece of the National Hemophilia Foundation's (NHF’s) Washington Days event March 8-10, 2017. But we know that many community members want to advocate today as the debate begins. Here are some tips for how to get involved today: 

What to Say

Since the details of how the ACA may be repealed and replaced are uncertain, it’s difficult to give advice about particular policies to support and/or oppose. But, now is a great time to contact your member of Congress to tell him or her the ways that the ACA has affected your life. Below we give instructions for how to call and/or email your member of Congress. 

Here are some talking points to guide your message: 

  • Introduce yourself and say that you are a constituent who lives in the member’s state or district.
  • Explain that you or a loved one is affected by hemophilia, von Willebrand disease (VWD) or another bleeding disorder.
  • Say that you are concerned about the repeal and replacement of the ACA because bleeding disorders are expensive, chronic conditions and that our community needs access to high-quality, affordable health insurance
  • Mention policies that matter to your family, such as the elimination of pre-existing conditions exclusions, elimination of lifetime caps, limits on out-of-pocket expenses, ability for young adults to stay on a parent’s insurance plan until age 26, and network adequacy policies that ensure access to hemophilia treatment centers (HTCs).  Include specific details about how these policies have affected your life or a family member's life. 
  • Ask that the member support these and other policies to ensure that individuals with expensive, chronic conditions can access adequate health insurance.


Ways to Advocate:

  1. Call your member of Congress

The easiest way to get involved is to call your member of Congress and tell him or her what matters to you as members of Congress consider repealing and replacing the ACA. You can call the Capitol Switchboard: 202.224.3121 and give your state or address. Then you will be connected with your representative's and senators’ offices. Once you reach a staff person or voicemail system, use the talking points above to tell your story.

  1. Email your member of Congress

Visit your representative and senators’ websites. You can find them via Google or visit: and All will have a contact page with a form for you to send them an email.

If you have advocated before, you may have the email address of your representative’s or senators’ staffers who work on health policy. Feel free to email them directly.

Use the talking points above to draft your message.

  1. Tell NHF Your Story

NHF is also collecting stories from community members about how the ACA has affected their lives.  We will use these stories for advocacy for the community.

Please complete this form/email this information to: and send us the following information:

  • Name
  • Email Address
  • State
  • What, if any, challenges did you or your family have securing adequate health insurance prior to the passage of the ACA?
  • How the ACA affected your or your family’s access to health insurance and healthcare?
  • How would you or your family be affected if the ACA were repealed?
  • What type of health insurance do you have (employer-sponsored, Medicare, Medicaid, individual market, marketplace plan)?

Congress has taken the first steps toward repealing the ACA, but it will be a long legislative process with plenty of twists and turns along the way.  We know that there is much confusion and fear about what is happening, and how and when it will affect community members. NHF will regularly update the community by emails and social media posts as efforts in Washington continue. Please contact us at: with any questions or concerns.