Advocacy

You Can Make a Difference!

You have the power to impact the future of your own access to better treatment and care through your own advocacy. Policymakers in Harrisburg, PA and Washington, DC need to hear from you in order to make educated and informed decisions on legislation impacting you and your family. Their awareness of bleeding disorders starts with you. Become your own advocate and make a difference.

What Can You Do to Make a Difference?

• Understand the legislative process for the federal government
• Understand the legislative process for the PA state government
• Understand the issues
• Research your legislators voting records, biographies, and district to understand their positions
• Vote on Election Day
• Introduce yourself to your legislators and the members of their staff
• Communicate regularly with your legislators and the members of their staff
• Travel to NHF's Washington Days each year
• Travel to Harrisburg Day with the Chapter

Here are some tips for writing to your legislator

Use plain white paper and provide your full mailing address, email and phone number at the top of your letter and also following your signature as a means of identification and to give your legislator a way to contact you. Remember to sign your name.

DOs

• Legislators like to hear opinions from people in their home district and want to be kept informed of issues of concern to their voters.  Base your letter on your own experiences and observations.
• If writing about a specific bill, describe it by number or its popular name.  If you are not sure, call the Chapter to get the most up-to-date information. Legislators get lots of bills before them in the course of a year, and can't always take time to figure out which one you are referring to.
• They appreciate well-thought-out letters that present a definite position.  Tell them why a bill or an issue is important to you.
• Even more important and valuable to them is a concrete statement of the reasons for your position.  Legislators have to vote on many matters with which they have had little or no first-hand experience.  Some of the most valuable information they receive comes from local people in their district.  Legislators don't know about hemophilia or von Willebrand Disease, so we have to tell them about it and also what we are concerned about.
• When writing about hemophilia or VWD, ALWAYS talk about the cost of hemophilia medicine (factor concentrates).  You can make a powerful statement on the cost issue.
• Short letters are almost always best.  Members of Congress receive many letters each day, and a long one may not get as prompt a reading as a brief statement.
• Letters should be timed to arrive while the issue is alive.  Members of a committee considering a bill will appreciate having your views while the bill is in their committee waiting for action.
• Remember to follow through with a thank-you letter if the legislator responds to you.

DON'Ts

• Letters that demand votes for or against a certain bill without giving any reasoning are not very influential.
• Threats of defeat at the next election are not effective.
• Boasting about how influential you are is not helpful.
• Don't ask for a vote commitment on a particular bill before the committee in charge of the subject has had a chance to hear the evidence and make its report.  Instead, write to ask them to review the bill and give your opinion about it.
• Form letters or letters that include excerpts from other letters on the same subject are not as influential as a simple letter drawing on your own experience.

Congressional courtesy requires legislators to refer letters from non-constituents to the proper offices, so you should generally confine your letter writing to your own legislators or members of the committee specifically considering a bill.  If you are not sure who your state Senate and House members are, call the Chapter or go to:  www.legis.state.pa.us. You can type in your address and find your state and federal legislators.