- 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.
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.
- A group of ladies have really made progress!
- Connecting with other parents
- Connecting with local and state level EMS
- Connecting with a Dept of Health representative
- Connecting with their state representative
- Legislation was filed in late 2016 but didn’t move
- Refilling in 2018 is currently planned
- Awareness and support need to be raised
- We are currently planning a “round-table” type discussion with the state level interested parties and interested families. To join the MN Team or just get more information, click the “Join the Team” menu link to contact us.
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!
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!
- 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.
- 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
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!
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
SB503 – Allows for Regional Medical Directors to set protocols for those with special medical needs and for paramedics to administer patient carried specialty meds! (It also provides the needed liability protection for our Medical Directors and Paramedics along with other important EMS related issues.
2015- Make correct contacts on the state level and prove real need and gap in coverage.
2016- Attend meetings and assist with developing a good plan for solving the issue. Original legislation was drafted late in session and didn’t move. Remainder of year spent perfecting that legislation and spreading awareness of the issue. Early Filing of HB226 by Rep. Hubrecht in Nov. set us up for success.
2017- January -Started strong with a lunch at the Capitol, followed by personally visiting each office and delivering packets of support documents: Fact Sheets, Data of types and numbers affected, Organization and Individual letters of support, etc.
Visits, phone calls and emails were consistent with legislators and testifying at 2 Committee Hearings and attending State EMS Day at the Capitol which all secured support of the Bill.
We owe a huge thanks to Rep. Lauer, Sen Hegeman, and Sen. Munzlinger for filing or amending the language onto their Bills and working so hard to see it through. We also sincerely thank the other legislators who co-sponsored and help support this important legislation!