Proposed bill designed to save lives of rare disease patients

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JEFFERSON CITY - When someone dials 911 for a medical emergency, they expect paramedics to do all they can to save them. But for rare disease patients, paramedics often can't do all that's necessary.

Missouri's emergency medical protocols prevent paramedics from administering prescription medications found in a patient's possession during a medical emergency. 

Rare diseases often have rare medications, and first responders don't typically keep them on hand. For individuals with hemophilia, adrenal insufficiency and other rare disorders, Missouri's emergency medical protocols can be as dangerous as their diagnosis.

The Missouri House Committee on Health and Mental Health Policy considered a bill Wednesday that could be an antidote to this problem, which is estimated to affect at least 125,000 Missourians with rare diseases. 

One of those 125,000 is Danny Shelton, a 6-year-old from Rolla with Hemophilia B, a genetic bleeding disorder. 

His grandmother, Darlene Shelton, an advocate for the rare disease community, testified at the hearing with Danny by her side.

House Bill 226, sponsored by Rep. Tila Hubrecht, R-Dexter, would clarify Missouri's protocols, allowing first responders to administer patient-held prescription medications for rare diseases and disorders during emergency situations. 

"In the health care world, there are some people with special medication needs that not every hospital or pharmacy is equipped to deal with," Hubrecht said. "Those medications are certainly not going to be available in every ambulance or emergency truck."

One of those specialty medications is the blood clotting factor needed by hemophilia patients during a bleeding event. It is not available at most hospitals in Missouri, but most patients carry an emergency dose with them. However, even if a patient has a dose on their person during an emergency, they will likely be diverted to a hospital in Kansas City or St. Louis for emergency treatment.

Paramedics operate under uncertainty with the current emergency medicine protocols, said Jason White, Missouri Emergency Medical Services Agent Corporation. He said many paramedics think they will be held liable if they dispense a patient's personal medications.

This can cost precious seconds during an emergency, and that's why Shelton said the protocols need to be changed.

"If you're talking about a brain bleed or a large organ bleed, the hour it takes to get a patient to St. Louis or Kansas City for treatment is not acceptable," Shelton said. "One hour is too late."

She said the proposed bill would provide families of rare disease patients with peace of mind during medical emergencies and ensure paramedics can perform life-saving treatments at the scene of an accident without fear of liability.

Shelton, who has championed this legislation for nearly two years, said it's important to raise awareness of the medical protocols, because many rare disease patients don't know they won't be protected in an emergency.

"Unfortunately, many people who live life with a rare disease have no idea they're not protected," Shelton said. "And once they know, they need to get involved with this campaign to help make our EMS system more effective for all of us."

Representatives from the Missouri Emergency Medical Services Agent Corporation and other health groups testified in favor of the bill. No one testified in opposition. 

Individuals interested in supporting the campaign to change the emergency medicine protocols can visit for upcoming legislative advocacy events and information on the progress of HB 226.