United States – Take Action
On February 28, 2023, Senator Ben Ray Lujan introduced federal legislation called the CCM-CARE Act of 2023. It is known as Senate Bill 543 or S.543. This legislation will be under consideration through the end of the session in December 2024.
We need you to call your legislators to tell them this legislation is important to you. We particularly need those of you represented by members of the Senate HELP Committee and the House Energy and Commerce Committee to call your legislator’s office and ask them to co-sponsor the bill and those of you living in states where we have active research programs.
The CCM-CARE Act calls for the following:
- Support for the creation of additional Centers of Excellence that can coordinate drug trials as well as secondary clinical centers that can provide outstanding care;
- Increased funding for research at all levels – basic, translational, and clinical;
- Prioritization of CCM medications at the FDA since, unlike other illnesses, we do not yet have a single approved pharmacological treatment; and
- Collection and analysis of data on CCM by the Center for Disease Control so that we better understand how many people are affected by the illness and how they are affected.
Talking Points
When you talk to your Senator or their legislative health aide, you can mention why any of the above are important to you and your family. This is the most critical message to communicate. Legislators need to hear our stories!
Script for Phone Call
Here is a sample of the kinds of messages you can leave when you call your Senator’s office:
To ask for co-sponsorship:
“My name is Jane Doe, and I live in your state. I want to request the Senator’s support as a co-sponsor of the CCM-CARE Act. This legislation is very important to me because I have a cavernous malformation and currently have no options for treatment outside of brain surgery. There is no clinical center in my state with expertise in the illness. Co-sponsoring and passing this legislation would speed the development of treatment options, save lives, and save countless dollars in health spending. Please thank the Senator for his support.”
To set up an appointment:
“My name is John Doe. I want to schedule an appointment with the Senator or her health legislative aide to discuss a Senate Resolution called the CCM-CARE Act and ask for her co-sponsorship. This legislation is important to my family because my 6-year-old son Sam has cavernous malformations, has already had two brain surgeries, and may need more. I would like to have an opportunity to discuss how this legislation will help Sam have a better future.”
If you can schedule a face-to-face meeting or phone conversation with a Congressional staff member, please write to us at info@alliancetocure.org so we can prepare you.
Please give your representative’s office our contact details so they can write to us for more information: info@alliancetocure.org.
Updated 3.1.2023
