Meet With Your Legislator

MeetingLegislators_edited-1Spring is a great  time to visit Washington DC. The weather is good and except for spring break, the Senate and House are in session. It’s a great time for you to make an impact on your legislators by putting a face on childhood cancer and showing how all children can benefit from the RACE for Children Act that will lead to development of  more effective drugs to fight cancer.

ConorWashingtonFirst and foremost, while on the Hill forget political labels. You should not be an “R” or “D.”   Your concern is kids’ cancer issues. Think of yourself as a “K” for kids.  Most Representatives are very eager to talk to as many of their visiting constituents as possible about their concerns. Although you may not get an appointment to meet directly with your  Representative and Senator, each office has a staff person who will meet with you. It’s important to remember that when speaking to a staff member, always treat them with the same respect you would exercise with the Representative or Senator. The staff member is their personal representative and is obliged to pass on your requests to the legislator. Treating them with respect will go a long way.

Here’s some quick and easy tips on how to schedule a visit and make a successful presentation of why the RACE for Children Act is so important to our children in the fight against childhood cancer.

Schedule an appointment.  Before you plan your trip, your should write and request a meeting or you can simply call.  To contact your legislator’s office, click below and enter your zip code. Click here for House of Representatives information.  Click here for Senator information.

Explain the purpose of your meeting. Tell the scheduler that you would like to discuss the Research to Accelerate Cures and Equity (RACE) for Children Act, House Bill HR.1231 (Senate Bill S.456 if you are meeting with a Senator or their staff).   Remember that you will need to keep the meeting as brief as possible.  Schedule the meeting for about 15 minutes and try to keep your presentation to less than ten minutes to allow time for questions.

Tell your child’s story. When you go to the meeting, take a picture of your child and tell your personal story like only you can.  Demonstrate why improved drug development would have helped your child.

There have only been three drugs ever developed specifically for childhood cancers while adults have hundreds.

  1. Children with cancer do not have access to the most promising, novel cancer drugs in their trials.
  1. RACE for Children Act provides that companies developing cancer drugs should test their drugs in children with cancer.  Specifically, pursuant to the RACE Act, if a cancer drug is developed for a molecular target that is relevant in a pediatric cancer, then that drug should be studied in the pediatric cancer as well.
  1. RACE is not a new law, but an update to an existing law. The RACE Act updates the Pediatric Research Equity Act (PREA), which provides that companies developing drugs for adults also test the drugs in children.
  1. RACE does not cost the taxpayers anything.

Print out materials to leave behind. The one page Executive Summary is a concise and clear explanation of PREA regulations and why the regulations  need to be updated to catch up to today’s science. The one page summary should give the staffer information to refer to after you leave.  For additional supporting evidence of why the RACE for Children Act is important, print out and show the editorial from Nature, an industry respected bio research journal, supporting passage of the RACE for Children Act. You don’t want to leave too much paper behind so print a copy of the  100 Supporting Childhood Cancer Advocacy Organizations and have it ready if the staffer needs it.

LessRDmoreK6_edited-2Ask for their commitment. Ask them to be a cosponsor to the bill to improve drug development for children with cancer without using taxpayer money.

Remember that you may not be able to speak with the Senator or Congressman/woman and you should treat their staff person with the same respect you would if you were meeting the official directly.