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Advocacy Efforts >>Emergency Medical Response for CAH
Emergency Medical Response for CAH
Did you know that most ambulances do not carry Solu-cortef®? Furthermore, they are not allowed to administer the shot even if you have it? We are working to develop EMS protocols for emergency medical treatment of CAH and other adrenal insufficiencies. Too many people suffer from delayed medical care in emergency situations.
Status as of July 25, 2010
Background
Since its founding, CARES Foundation has worked tirelessly to ensure that every baby has a chance at a healthy start through advocating for expanded newborn screening including testing for CAH. As of 2008, every child in the United States is being screened for CAH at birth. While our work continues for expanded newborn screening abroad and monitoring newborn screening programs in the United States, we also have begun advocating for immediate, appropriate emergency medical response for adrenal insufficiency.
We are saving our babies. Families are learning how to care for our children with CAH. We now need to follow through to keep our children healthy throughout their lives.
People who do not have adrenal insufficiencies naturally produce up to ten times the normal amount of cortisol, which is vital to the maintenance of blood pressure and heart muscle tone, as well as sugar and salt balance, during times of physical stress. When illness or injury occurs in adrenally insufficient individuals, however, an immediate additional dose of glucocorticoids (hydrocortisone) is necessary to avert adrenal crisis. Delay in administration of these medications can lead to shock, heart failure and death.
Signs of adrenal crisis include: pallor, dizziness, headache, weakness/lethargy, abdominal pain, vomiting/nausea, hypoglycemia, hypotension, shock, heart failure and possible death. Because adrenal insufficiency is not readily identifiable by it symptoms, in line with the Joint LWPES/ESPE CAH Working Group’s “Consensus Statement,” CARES Foundation recommends that all individuals with CAH (or any other condition associated with adrenal insufficiency such as Addison’s disease) always carry medical alert identification cards or wear medical alert identification tags to alert emergency medical personnel to their need for immediate intramuscular or intravenous glucocorticoid treatment. Additionally, CARES Foundation recommends carrying a letter from a physician describing your condition and treatment needs whenever traveling. Finally, CARES Foundation recommends the administration of injectible hydrocortisone (the shot) before a trip to the emergency room or activating 9-1-1.
As our community has grown over the past several years, it has become increasingly clear that a primary concern among families is the lack of protocols for treatment of adrenal insufficiency in case of emergency. Individuals affected by CAH are not always in the immediate care of someone trained in or comfortable with administration of the shot. For example: a child at school when there is no school nurse, an adult affected by CAH living alone, an automobile accident in which the caregiver is incapacitated, a family on holiday outside of their “home” support network.
As of July 2010, Rhode Island, Massachusetts, and parts of New York and Texas have EMS protocols for the emergency medical treatment of adrenal insufficiency in place. In Southern Nevada and Maryland, protocol changes permitting administration of patient-carried medications have gone into effect. The current EMS protocols of other states do not address adrenal insufficiencies nor do they allow emergency medical response personnel to treat individuals with medical id that says "adrenal insufficiency" on it, doctor's orders that detail medical treatment protocols for adrenal crisis, or properly labeled medications.
To learn more watch CARES EMS Campaign Video.
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Campaign Goals
CARES Foundation is looking to change this through advocating for the inclusion of treatment for adrenal insufficiency in EMS protocols across the nation. We have on-going appeals in several states. The goals of our campaign are:
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If an individual is wearing medical alert identification that says “adrenal insufficiency” on it (according to a recent CARES Foundation-sponsored survey, 75% of individuals affected by CAH wear medical alert identification), emergency medical responders will have the training, protocols and medications necessary to provide immediate appropriate medical response.
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Emergency management systems across the United States will add Solu-Cortef® to their formularies. As the drug of choice for treatment of CAH in times of adrenal crisis, Solu-cortef® provides both glucocorticoid and mineralocorticoid coverage. It is safe, has a shelf life of five years and is cheap ($5 per act-o-vial wholesale).
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States with EMS Protocols in Place
| Administration of Patient-Carried Medications Available in: |
Maryland |
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Nevada - Southern Region |
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Current Campaigns
CARES Foundation members and support groups are leading initiatives for the expansion of emergency medical response protocols to include the pre-hospital treatment for adrenal insufficiency in numerous states across the country.
How You Can Help
In those states where we have on-going campaigns, concerned residents can make a huge impact. Affected individuals and their families can truly help our appeal by getting involved and urging the addition of Solu-Cortef® to EMS formularies and emergency treatment protocols for CAH and other adrenal insufficiencies. Please take a moment to look at the chart below to learn more about current letter writing or Visit Your Firehouse Week initiatives. Please take the time to write a letter, visit your local firehouse and join a campaign. (If you do, please let us know at publicaffairs@caresfoundation.org.) Together we can make a real difference!
If you are interested in leading an initiative in your state, please contact publicaffairs@caresfoundation.org.
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