Fall 2009 Newsletter

CARES Foundation, Inc.

EMSC: A Piece of the EMR Puzzle

In both of our last two newsletters, we have written about Emergency Medical Services for Children (EMSC) and its pivotal role in CARES Foundation's campaign for immediate, appropriate emergency medical treatment of adrenal insufficiency. In the Spring '09 newsletter we wrote of CARES and our EMS initiative being introduced to the EMSC community across the nation through a story in FAN Mail. Then in our Summer '09 issue, we reported that two CARES family members had the unique opportunity to represent CARES and the adrenal insufficient community at the EMSC national conference this past June in Washington DC.

What is EMSC?

As noted on the EMSC website (www.childrensnational.org/emsc), EMSC is a federally funded program "designed to ensure that all children and adolescents, no matter where they live, attend school, or travel, receive appropriate care in a health emergency." The Program is administered by the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). The Program provides  grant funding to EMSC programs in all 50 states, the District of Columbia, and five U.S. territories.

In 1991, the EMSC Program established the EMSC National Resource Center (NRC) which is housed within the Children's National Medical Center in Washington, DC. Among the many responsibilities of the NRC is overseeing the EMSC Family Advisory Network (FAN).

Created by the NRC in 1999, FAN is committed to ensuring the inclusion family voices in every state EMSC Program. EMSC State Family Representatives serve on EMSC advisory committees, assist with special community outreach programs and work on developing and implementing EMSC policy objectives and educational opportunities within their state. The NRC also distributes FAN Mail, a semi-annual newsletter distributed to the EMSC community.

What is the importance of EMSC and FAN to CARES' EMS initiative?

EMSC is vital to introducing CARES' campaign for emergency medical treatment of adrenal insufficiency to EMS leaders across the nation. It was through the NRC’s introduction that CARES was featured in the Winter ’09 issue of FAN Mail and CARES family representatives were invited to the EMSC national conference. EMSC’s involvement in our campaign now continues at the state level where EMSC program managers and family representatives are playing pivotal roles in having our request placed before state EMS medical advisory boards. A complete list of state EMSC program managers and family representatives can be found at: http://www.childrensnational.org/files/PDF/EMSC/
GrantPrograms/State_Grantee_List.pdf

Emergency Medical Response for CAH—Update

The New York State Emergency Medical Advisory Committee (SEMAC) met on September 2, 2009. The committee considered a motion brought forward by the State Emergency Medical Services Council (SEMSCO) to add Solu-Cortef^® to the state formulary based on the strong recommendation of the Emergency Medical Services for Children (EMSC) Advisory Committee. Despite unanimous agreement by committee members present to add Solu-Cortef^® to the formulary, no formal vote could be taken due to lack of a quorum. These recommendations will go before the committee again in December 2009. If the recommendations are adopted at this time, they will then go out to the various regions of New York in the form of an advisory. Each region will then have to formally adopt the new protocols. To make EMR for CAH and other adrenal insufficiencies a reality in New York, our efforts will switch from a state-wide to region-by-region campaign at that time. If you live in New York and would be interested in representing your region in this campaign, please contact CARES Support Group Leader Deborah Brown at ny3.support@caresfoundation.org

In Maryland, Support Group Leader Debbie Ham met with the State Protocol Development Committee in August. A medical director was assigned as a sponsor to our request for the addition of Solu-Cortef^® to the formulary and associated protocols for emergency treatment of adrenal insufficiency. CARES Foundation is working on the protocol request submission application with the assigned medical director.

Families and healthcare professional members continue work on EMS campaigns in the states of Arkansas, Colorado, Massachusetts, Michigan, Nebraska, Nevada, North Carolina, Tennessee and Virginia. To learn more about CARES EMS Campaign visit: http://www.caresfoundation.org/productcart/pc/ems_cah.html

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.