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.

Adrenal Insufficiency United – ORDERS facebook page

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.
    • It was originally filled in 2016 by the Ambulance Assoc. but didn’t move
    • It was refiled in 2017/2018 session but didn’t move far enough
    • With dedicated families consistently pushing for protection and the State EMS and Ambulance Association working together, this important legislation was passed!

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.

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.

 

Blogs, News Stories & Articles

BLOG:   Hemohelper blog   – by Joslyn Kelly

ARTICLES:

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, 2017Daily Statesman-Pg 2- Feb 2017– by Noreen Hyslop

NEWS STORIES:

KFVS-12 Story- Mar, 2015

2nd Story-KFVS-12 -Mar, 2016

KOMU News Story – Feb, 2017

KFVS-12 Story on the MO Bill Signing – July, 2017

 

 

 

Missouri-Bill Passed-May 2017

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.

BACKGROUND:
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 along with 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!