DSF has launched a Legislative Advocacy Program and now is the time for our community to get involved!
You may feel like there is nothing that happens in Washington, D.C. that benefits your family, but that is not the case! There are quite a few pieces of legislation pending in Congress that can have a direct impact on our community. It takes a lot of work and involvement from many people and organizations to get anything done in Congress, and you may feel like sending a message to your legislators won’t make a difference. It is quite possible that it actually won’t make a difference because they have so many people contacting them about different issues every day. But if you don’t do it and they never hear from you as their constituent, then they may never have any reason to consider supporting the issues and causes that are important to our community. They need to hear from us!
The idea of contacting your members of Congress may be intimidating and you don’t know where to start. Thankfully, there are tools available to make it easy for us. When you enter your address, it will determine who the message should go to and provide a draft message. You can customize it by adding some personal background to the message. Tell them who you are and a little bit about your loved one with Dravet syndrome. It is very important that they know your personal story to understand why this request is so important to you.
Here are a few things going on right now that you can take action on to get involved. Pick one or do them all!
1. Ask your members of Congress to join the Congressional Epilepsy Caucus
A caucus is a group of bi-partisan legislators that join together to support a specific cause. This newly formed Epilepsy Caucus will help to promote legislation that will benefit the epilepsy community, so we need to get as many members as possible to join.
Click here to check to see if your legislators are already members of the caucus. If not, you can use the form to send a message to ask them to join!
2. Ask your Senators to support Accelerating Kids Access to Care Act
This bill would make it easier for patients to see providers out of state because it would set up a framework for doctors to more easily accept Medicaid plans from other states. For us, that means potentially not having to pay out of pocket to see a Dravet specialist in a different state.
This bill passed the House already in September. The hope is that the Senate will take up this legislation during the short session after the election before the end of the year. It has a lot of support already, but our Senators need to hear from us now to ensure that they address it before the session ends.
Click here to find the Action Alert for this bill to send a message to your two Senators to ask them to co-sponsor or support this legislation.
3. Ask your Senators to support the Creating Hope Reauthorization Act
This bill would reauthorize an existing program which allows drug companies to receive a Priority Review Voucher (PRV) in order to have an expedited approval process for a treatment that would benefit pediatric rare disease patients. This is important to our community because we want the companies working on new treatments to have every tool available to get those treatments approved as quickly as possible for our community.
This bill has also already passed the House (as a part of another bill called Give Kids a Chance). This is another piece of legislation that we hope the Senate will be willing to take action on before the end of the year, so please ask them to not let this existing program be retired simply because they did not get to it.
Click here for more information about this bill and the Action Alert to send a message to your two Senators.
We chose to share these three requests at this time because there is momentum needed to drive them forward right now, but there are so many other bills or initiatives that we can get involved in to make a difference. We will be sharing additional opportunities to get involved in the coming year.
We appreciate any efforts from our community to help us make progress in Washington. If you have any questions about how to get started or would like to be involved in any future advocacy efforts, please contact DSF Patient Advocacy Director, Shannon Cloud.
