Author: Darlene Shelton
TX – The Team is Forming
- We have connected with several families ready to work on protocol changes
- We have 2, very motivated board members from Texas
- We are trying to connect with more rare disease and chronic illness organizations in the state
- State EMS regulators are of the opinion there’s not really a problem due to a “white paper” written back in 2010
- We do have some connections made with state or district EMS personnel
- WE NEED A TEAM FORMED! We need to start gathering data on events that have happened and call a majority of services to determine the actual protocols and beliefs of how they are allowed to treat. — Click the “JOIN THE TEAM” link to join the efforts or get more information.
OR- Adrenal Insufficiency United has been working for 4 years
Jennifer Knapp, Director, of A.I. United and her Board and many families started working on protocol changes for 4 years. They got legislation for EMS protocol changes but met a lot of opposition from the state EMS association.
From that point, they have revised their plan of action and have support from several Senators for legislation for a medical ORDERS database. Unfortunately the legislation did not move in the 2017 session.
We are now looking at trying to reach the state EMS association again with the help of the supportive legislators to help them realize the extent of the need for protection. Best case scenario would be for the realization to come to the state association and protocols changed without additional legislation.
With all this said, this will only happen with the voices of many affected families requiring protection for their loved ones! To join in the efforts or just be updated, click the menu link “Join The Team” and you will be added to our database.
MN- EMS Bill is ready to file for 2019!
- The EMS Legislation Bill, SF153, passed in May, 2019 with Governor Walz signing into law in June.
Be sure to visit our “Emergency Tips and Products” page and follow those instructions. It is vital that you follow the steps and build a relationship with your local EMS.
KS – Just Starting
Because of MO’s Bill passing, we have the attention of some KS regulators. This is a great time to BUILD A TEAM and use their sister state’s momentum.
Click the menu link “JOIN THE TEAM” to join the efforts and/or to get updates!
IL- Just getting started
We have a few families who are ready to work on the protocol changes but we need to form a team! Click the “JOIN THE TEAM” menu link to be added to the database or for more information!
FL – Team is being created
- We have connected with several families already working on protocol changes
- We are trying to connect with more rare disease and chronic illness organizations
- State regulators are of the opinion there’s not really a problem and we should just contact every single EMS service.
- WE NEED A TEAM FORMED! We need to start gathering data on events that have happened and call a majority of services to determine the actual protocols and beliefs of how they are allowed to treat. — Click the “JOIN THE TEAM” link to join the team or get more information.
CA – Team is Being Created
- We are making contacts with other organizations and families.
- We have done research on current regulations and it’s the same general opinion that a problem doesn’t really exist.
- To join the efforts and/or get updates, go to the “Join Our Team” link
CT Action Team starting
We are just putting together a team in Connecticut and very excited to have a retired EMS Paramedic as our Leader”! Click on the “Join Our Team Page” to get updates, ask questions, give comments, and/or volunteer to help be part of the change!
Blogs, News Stories & Articles
BLOG: Hemohelper blog – by Joslyn Kelly
HBDA Article – Danny’s Dose-2015 – for Alabama Chapter Newsletter
Coalition-Winter Newsletter-pg 20 – 2016 for The Coalition for Hemophilia B
Coalition Mag-2017 Article -with hero pic – for The Coalition for Hemophilia B
EMS World -Special Protocols – by Mike Ruben
Daily Statesman-Pg 1-Feb, 2017, Daily Statesman-Pg 2- Feb 2017– by Noreen Hyslop
KFVS-12 Story on the MO Bill Signing – July, 2017