Many people aren’t aware that even if they have their emergency medication with them, with instructions, that it may not be given to them. Their carefully labeled, lifesaving treatment could potentially not be administered by the emergency personnel or first responders.
The Shelton family found this out through another’s story. The Shelton’s have a son named Danny, who was diagnosed with severe hemophilia before he was a year old. They prepared as much as they could to make sure he would be safe wherever he was, whatever the circumstances. They put a medical alert on his car seat, they attached his emergency replacement clotting factor, they included medical orders and dosing information and thought he was safe if his parents couldn’t act or speak.
In 2014 they lost their sense of security.
At a pharmaceutical company’s medical advisory board meeting, Danny’s mom was discussing their detailed emergency plans for their son when she was told by another hemophilia patient, “great plan, but it won’t do you any good.”
Shocked, she listened as Wayne Cook explained that he had been in a bad car accident thirteen years prior that left him with a head injury and a broken wrist. Knowing the danger of the head injury alone, he would have given himself his injection, but the broken wrist left him helpless. When the ambulance came he was conscious and was able to give verbal instructions to the emergency responders. They told him they could not administer the medication. He would have to wait until he was in the ER.
Time was ticking and the ER staff gave him the same response. They would not administer the medication that he had brought. He began to have vision problems. Picturing the bleeding in his brain that could end his life and unable to convince the ER staff, he called his wife. She asked the nurses to leave and gave her husband the treatment he needed.
This incident put them on the road to making change in New York. It took 7 years for them to change their state protocol for EMS service.
Wayne Cook is now the president of the organization The Coalition for Hemophilia B and a strong supporter of the Shelton family’s efforts.
The Shelton family did their own research, and met with other families. To their dismay, they found this to be a pattern. They met people who had lost loved ones because their emergency treatment was not administered due to protocol.
They decided that someone needed to change policies to avoid these needless tragedies. They decided to be the family who would be the catalyst for change.
Darlene Shelton, Danny’s grandmother, became the driving force for their campaign. Their organization, dubbed “Danny’s Dose” after the little boy who held their hearts, was formed. Danny’s Dose aims to change the protocols across the entire country, for anyone who requires “specialized emergency treatment due to rare disease or chronic illness”.
Darlene wasn’t sure where to start to create this type of change. She learned it is not necessarily an issue of legislation; more typically, it’s an issue of regulation. Standard protocols which exist because of concerns regarding liability in an increasingly litigious society. At times, medication or a specific treatment is delayed only due to a general lack of knowledge.
Lacking resources but not motivation, Darlene started calling people. She found there was no existent push for change in this area and that differences varied by local: some people might be given their treatment if they called an ambulance, some might be treated in an emergency room but overall they normally will just be transferred to a Level 1 trauma center likely several hours away.
Darlene advocates that times have changed and protocols need to change too. “Medicine wasn’t like it is today. People weren’t able to be as active with their healthcare.”
The Sheltons also stress the need for rare disease patients to advocate for themselves more and be more prepared than people with more common conditions.
“Rare patients won’t have their medicine available to them in an ambulance or in most ERs”. ~Darlene
Patients and their parents need to put in the effort to plan to protect their own wellbeing in an emergency. Darlene and her family are determined to make families aware of their roles in protection and that those efforts aren’t futile.
“If parents aren’t aware of the protocols in place how can we protect our children? Until 2014 we thought Danny was safe.” ~Darlene
The Sheltons were successful in passing the very first state EMS Bill in Missouri in May,2017 and held their first Family Emergency Preparedness Education Event this past September. They are working diligently to raise awareness across the US to continue to make change. Darlene was recently on Capitol Hill, advocating not only for state legislation but for federal legislation as an added level of liability protection and clarifying treatment standards.