There are many things we count on without thinking about it: when we stop at a red light, we expect it to turn green; when we open the window, we expect to feel air and when we call 911 in an emergency, we expect to receive appropriate care. When a California parent’s son fell from a two story window, she rushed to administer his clotting factor for his severe factor VIII deficiency, or Hemophilia A, and she was admonished by paramedics despite showing his medic-alert bracelet and medication with prescription label. She was even threatened with arrest.
Unfortunately, in California and most states across the US, many rare patients with life-saving medications and emergency protocols cannot expect to receive the care they need from paramedics and emergency room staff due to discrepancies in EMS Treatment Protocols. This gap in care can lead to waiting for emergency doses of bleeding disorders medication and many other speciality medications in the field by paramedics and/or in the emergency room by medical personnel. Waiting to receive emergency medications specific to your condition can lead to unwanted consequences, including extended pain, nerve damage, loss of limb, organ, brain damage and in some cases, life.
When emergency treatment is needed for our rare conditions, we may receive the very opposite of what we expect, which could be a delay in care due to medical personnel informing us they cannot follow our specialist’s treatment plan for our rare condition
Emergency medical personnel and ER staff can generally be counted on to provide standard of care for known or routine conditions and they want to help. However, patients with rare conditions and their families are finding that access to the emergency treatment plan ordered by their specialists is, at times, not followed. This can result either from paramedics and emergency staff not being familiar with rare, life-saving, self-carried medications or specialised protocols and being unable to act either due to liability or lack of familiarity with a medication, condition or both. Paramedics and emergency facility personnel want to follow specialists’ orders and protocols, but may require additional knowledge and training to ensure patients Standards of Care are followed in an emergency.
The Danny’s Dose Alliance is building relationships with state and National Emergency Medical Service leaders to enact change. Danny’s Dose mission is to raise awareness of the current gap in Emergency Treatment for all with special medical needs.
Their three main goals are:
1. To change the current protocols, help educate emergency service personnel and educate affected families in proper emergency planning and protection.
2.To address this concern, they are making headway across the nation to provide education, training.
3. To implementation to ensure rare patients have access to their life saving medications and protocols.
In Missouri, 2014, Darlene Shelton naturally assumed that with her grandson’s diagnosis of hemophilia B, in the event of an emergency he would have his clotting factor administered according to his specialist’s orders. She was shocked to learn that not only were paramedics not allowed to administer her grandson’s life-saving medication, but the nearest emergency room qualified to treat him was two and a half hours away by land and minimum of one hour by helicopter. Her family decided they could address this concern by contacting local legislators and alerting them of the situation.
In 2017, Missouri became the first state in the nation to allow the administration of specialists’ protocols and self-carried, life-saving medications in an emergency by paramedics! Subsequently, in 2019, Minnesota became the second state in the nation to pass similar legislation and Louisiana’s State EMS Commission is currently working on changing their State Scope of Practice. This has sparked a conversation for Danny’s Dose to begin partnering with National paramedic and emergency treaters across the United States to provide education, training and implementation of protocols to emergency treaters to assure the proper Standards of Care for patients with rare conditions.
What You Can Do To Help Yourself/Your loved One/Person(s) You Care For?
Patients and organisations such as EveryLife Foundation, Global Genes, and NORD (National Organization of Rare Diseases) have been working with Danny’s Dose with the goal of educating families and passing similar legislation which would enable patients with rare conditions to have their specialists orders followed in an emergency by paramedics and emergency room providers. Until this lack of care is corrected, and beyond, you can help yourself or your loved one with a rare condition with this effort. Danny’s Dose has established best practices for rare condition patients with self-carried, life-saving medications and protocols. Darlene Shelton recommends the following:
1.Obtain EMERGENCY MEDICAL ORDERS from your specialist
2. For Medications: create an EMERGENCY “GO BAG” - It should be clearly marked & always attached to the car-seat or an empty seatbelt in the car and should include:
3. Contact your local Ambulance Service (both city and county if an option) Inform them of your special medical needs. Ask for a Treatment Plan to be created. This will only apply to that service but it’s better than none
4.Contact your local Hospital if you don’t live near your Treatment Center
Training is available for Hospital staff and Paramedics
For more information about the training and Danny's Dose contact Darlene Shelton using the buttons below.
Rare Revolution Editor