Dear Addy,

I鈥檓 interested in getting involved in policy and advocacy work, but am I too late to get involved? When鈥檚 the best time of year to advocate?


Too Late to Advocate?

Dear Too Late to Advocate,

No need to worry – you鈥檙e in luck! You鈥檙e not too late at all.

Advocacy is Year-Round!

While certain states may only have legislative sessions that are open for a few months or that meet every other year, advocacy is a year-round effort.

Most people think of advocacy as meeting with legislators to ask them to support a particular bill, but advocacy is so much than that! Whether it鈥檚 pressing for your rights at school, in the workplace, or in a medical setting, or speaking out about a piece of legislation at your state capitol or in Washington, DC, everyone has a role as an advocate.

Ways to Get Involved in Advocacy and Policy

We鈥檙e so excited to hear that you鈥檙e interested in getting involved with advocacy! Here are some opportunities and tips on how to get involved in advocacy on a local, state, and federal level:

  • Participate in your state鈥檚 Advocacy Days;
  • Reach out to your local HFA member organization or national organizations, like HFA, if you鈥檙e interested in participating directly in advocacy and policy programs;
    • If you鈥檙e a young adult, sign up for our Young Adult Advocacy Summit or apply to be one of HFA鈥檚 Policy and Government Affairs interns;
  • Share your story with HFA through Project CALLS;
  • Subscribe here to receive HFA鈥檚 policy updates, including the Washington Wire, HFA鈥檚 monthly advocacy and policy news email updates, and Word from Washington, HFA鈥檚 breaking health policy news email updates;
  • Conduct one-on-one conversations with your elected officials via a telephone call, meeting, email, or letter in the mail;
    • Even just educating lawmakers on the basics of bleeding disorders or speaking with them about what it鈥檚 like living with a bleeding disorder – without having a specific policy ask – can be incredibly impactful!
    • Strengthening relationships with existing legislators and introducing yourself and building relationships with newly elected officials;
  • Participating in your legislator鈥檚 town hall meeting;
    Testify at a hearing in support of or against a piece of legislation when it鈥檚 being reviewed in its respective committee;
  • Participating in your local, state, or national organization鈥檚 Calls to Action;
  • And so much more!

HFA鈥檚 Current Call to Action: Help Ensure Lower Patient Copays Act (HELP Copays Act) 鈥 H.R. 5801

H.R. 5801, a bill protecting patients from copay accumulator adjusters, was recently introduced on the federal level in the House of Representatives. H.R. 5801, the HELP Copays Act, is a two-part solution that:

  • clarifies the ACA definition of cost-sharing to ensure that payments made “by or on behalf of” patients count towards their deductibles and/or OOP maximums; and
  • closes the EHB loophole to ensure that any item or service covered by a health plan is considered part of the plan’s EHB package and thus cost-sharing for these items/services must be counted towards patients’ annual cost-sharing limits.

Join HFA in asking your legislators to support H.R. 5801 to protect patients from these harmful insurer practices and ensure that ALL COPAYS COUNT! Send an email to your officials and make a difference with just one click below:



Have a question? Email us. Your name will be changed in the response.

HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed 鈥淒ear Addy.鈥 Questions submitted to this column are edited in order to protect your privacy and should be considered educational only, not individual guidance.

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