On February 28, 2017, Senator Tom Udall and the New Mexico Congressional delegation will introduce federal legislation called the CCM-CARE Act. We will provide the bill numbers as soon as they are available. Once introduced, we will need you to call your legislators to let them know how important this legislation is to you. We particularly need those of you represented by members of the Senate HELP Committee and the House Energy and Commerce Committee to ask your legislator to co-sponsor the bill.
The CCM-CARE Act calls for:
- The development of at least three Clinical Coordinating Centers, each of which would be capable of coordinating multi-center cavernous angioma clinical drug trials. The Centers are expected to offer expert clinical care and have an active research program. Multiple centers are being requested so that there is regional geographical representation (East, Midwest, West) and because multiple clinical drug trials may be run simultaneously.
- Cavernous angioma clinical training in Centers that have the possibility of participating as secondary sites in a clinical drug trial. Many of these are sites in NIH’s Stroke Network. Currently, there is little overlap between university hospitals where we have specialists and universities that would be participating in clinical drug trials.
- CDC to begin to surveil the incidence of cavernous angioma. There has never been an attempt to do this.
- FDA to pay special attention to Investigational New Drug Applications submitted for cavernous angioma clinical drug trials because we currently have no treatments available.
- Encourage NIH to focus more funding on cavernous angioma research including biomarker validation and quality of life measures.
When you talk to your legislator 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 legislator's office:
To ask for co-sponsorship:
"My name is Jane Doe and I live in Representative Smith's district in Smallville. I would like to ask for the Congressman's support as a co-sponsor of House Resolution 2480, the CCM-CARE Act. This legislation is very important to me because I have a cavernous angioma 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 Congressman for his support."
To set up an appointment:
"My name is John Doe and I live in Representative Hall's district in Greentown. I would like to set up an appointment to meet with the Congresswoman or her health legislative aide to talk about a House 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 angiomas, has already had 2 brain surgeries, and may need more in the future. I would like to have an opportunity to discuss how this legislation will help Sam have a better future."
If you are able to schedule a face-to-face meeting or phone conversation with a member of the Congressional staff, please write us at firstname.lastname@example.org so that we can prepare you.
Please feel free to give your representative’s office our contact details so they can write us for more information: email@example.com.