Summer 2009 Newsletter

CARES Foundation, Inc.

Premises Notes -

A Piece of the EMR Puzzle

While CARES Foundation's ultimate goal is emergency medical treatment protocols for CAH across the nation, there is something you can do NOW to help emergency medical responders know there is an individual with CAH in your home.

A Premises Note is information added to the 911 record for a given address that informs emergency responders (police, fire, rescue) of special circumstances at your home. Among other things, Premises Notes can be used to alert emergency responders to individuals with special healthcare needs at a particular residence. In other words, emergency crews will know of the special healthcare needs of anyone at your address before they arrive! Now, this can’t help someone with adrenal insufficiency if they are not at home when the emergency arises, but it is a step forward.

The Harpers in Washington, who recently established Premises Notes for their son with CAH, wrote CARES, "My husband, Mark, is a firefighter and he recently established premise information for our son, Wyatt, through the 911 emergency services. Whenever a 911 call is made from our premises the information that we sent 911 services immediately registers on their computer data base, making them immediately aware of Wyatt's CAH and medications that he takes. This service has given us a greater sense of peace."

In some places, registering Premises Notes is as easy as filling out an online form.

For example, in Southern Nevada, a First Responders Form can be accessed via http://fire.co.clark.nv.us/firstresponderinfoform/.

The premise information form which gets sent to the 911 emergency services in Washington is found at: http://www.assumptionoep.com/oep/Forms/911PremiseInformation.doc.

To find out what is available in your area, please contact your local emergency response system through a non-emergency number (311 in many areas).

An example of information you might provide via Premises Notes is as follows:

[Affected individual's name], DOB: Month, DD, YYYY, has an adrenal insufficiency, Congenital Adrenal Hyperplasia (CAH). This condition places him/her at risk of life-threatening adrenal crisis. In times of illness or injury he/she may require [medication and dosage] to avert adrenal crisis.

The purpose of the "Date of Birth" (DOB) notation is to make the record durable. Otherwise you would need to update it every birthday.

Additionally, it has been recommended NOT to put in any information about medical alert identification or any signs/symptoms as this may cause confusion. Finally, it has been recommended to include the needed medication name (e.g. Solu-Cortef) and dose as this would greatly assist responders.

EMS Campaign Gathering Momentum

CARES Foundation is pleased to announce the addition of information on emergency medical response (EMR) for CAH to our website. To learn more, please visit www.caresfoundation.org/productcart/pc/ems_cah.html. Here you can find background information on EMR for CAH, current campaign updates and links to existing protocols.

Our efforts in New York and Nevada continue and support group leaders in Maryland and Tennessee have started initiatives in their states.

Furthermore, in June, two gatherings very important to our EMS campaign occurred in Washington D.C.: CARES Foundation’s Continuing Medical Education (CME) Meeting entitled “Advances in CAH & Adrenal Disorders” at the 2009 Endocrine Society Meeting and the Emergency Medical Services for Children (EMSC) national conference. At the CARES CME Meeting, we distributed a flyer designed to increase awareness among medical professionals about the lack of emergency medical services available to patients with adrenal insufficiency and to encourage them to join our EMS Awareness campaign. CARES members, Louise Fleming and Meredith Blank-Taylor, represented CARES and the adrenal insufficient community at the EMSC conference and made moving presentations both during the plenary session and before EMSC Family Advocacy Network (FAN) representatives at a special evening session. As a direct result of these efforts, we have begun working on campaigns in North Carolina and Nebraska. Additionally, CARES is working with the New Mexico Department of Emergency Medicine to develop a training module specifically addressing the needs of CAH patients in the pre-hospital setting.

Finally, CARES Foundation is working with the American Academy of Pediatrics (AAP) in hopes of having a segment specific to the emergency medical treatment of adrenal insufficiency added to their Pediatric Education for Pre-hospital Professionals (PEPP) Program.

If you are interested in adding your voice to that of CARES Foundation and our family and healthcare professional members in any of these arenas or wish to learn more about organizing an initiative in your own state, please contact Gretchen Alger Lin at gretchen@caresfoundation.org.