Danny’s Dose made some headlines recently, check it out!
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.
Also from the LA Kelley Communications, Inc February Quarterly newsletter of “PEN”.
Lobbying for Specialized Emergency Treatment
Darlene Shelton founded Danny’s Dose Alliance after her ten-month old grandson was diagnosed with hemophilia. Although Danny always had his factor with him wherever he went, Darlene’s family learned that paramedics and ER workers were not allowed to administer the factor due to conflicting treatment protocols and liability fears. So Darlene sprang to action and formed Danny’s Dose with these goals in mind: (1) Raise awareness about the current gap in emergency treatment for people with rare diseases, chronic illnesses, and special medical needs; and see current protocols amended. (2) Assist with specialized education for EMS and ER personnel. (3) Provide education for affected families on how to better advocate for their treatment needs. The organization’s first goal was to amend protocols in the Sheltons’ home state of Missouri within two years. Darlene says, “Goals can be lofty, but I believe if you don’t set goals high, it removes some of the urgency.” After their proposed legislation was passed in Missouri, Darlene looked forward to their next goal. “We passed EMS legislation, assisted with the beginning of paramedic education, and are helping that grow in 2018 and beyond. Of course, we can’t be sure we will meet our five-year goal, but it looks promising, and we are determined to push hard.” Darlene hopes to have improved treatment protocols for ER and EMS in place across the entire US within five years of their first state, Missouri. The work of Danny’s Dose doesn’t just benefit people with hemophilia. “It benefits all individuals with special medical needs,” says Darlene, “covering rare disease and chronic illness. This covers those with rare, lifesaving meds.”
We are holding our very first Family Education Event
“Having Emergency Plans” – at home and play – at school and work – in travel”
This event will be for all Missouri families affected by rare disease or chronic illness causing special medical needs.
See Below for more information.
MO Education Day – Public Invite
MO Education Day -Exhibitor-Sponsorship Invite
MO Education Day – Sponsorship Guidelines
What does this mean?
Currently due to conflicting protocols and liability issues,
“Most Paramedics & ER Doctors believe they are prohibited
from administering patient carried specialty medications or
deviating from standard protocols for rare medical needs”
Due to a lack of uniform reporting, nationally we have no
records of how often these events are happening which is
preventing the need of protocol changes being apparent
on the state and national levels.
It is our responsibility to raise awareness for the protection
of our families and friends with SPECIAL MEDICAL NEEDS!
Our paramedics need new protocols allowing for
"administering specialty patient carried meds
& treatment based on the
specialist's EMERGENCY MEDICAL ORDERS"
Typically "special medical" patients are stabilized and
transferred to a Level 1 Trauma Center or for those with
"specialty medications" are held at the local ER until
the “guaranteed safe” meds can be delivered. Both
scenarios result in a delay in treatment.
A delay causing anything from prolonged recovery
to organ damage to loss of life!
We all know time matters and this must be changed!
We need you to join us in this effort,
many voices are heard much better than one!
March 27, 2015 – The following organization are in support of Danny’s Dose.
Coalition for Hemophilia B
COTT – Coalition of Ten Thousand
March 2, 2015 – Local southeast Missouri News Channel, KFVS-12, airs story about the Protocol change. (News Story Link)
Jan 2, 2015 – Wrote to Tila Hubrecht, my newly elected Representative, about the danger in MO for a certain group of individuals with Bleeding Disorders and rare diseases who have to carry their own life-saving medications but can’t have them administered by emergency personnel.
She took action, started making contacts and researching the details surrounding the protocols.