Non-profits partner to help people with sickle cell disease get faster, better emergency care.
Hanover, MD – Sickle Cell Disease Association of America (SCDAA), the leading patient organization for people with sickle cell disease (SCD), announced a pilot program with MedicAlert Foundation to enhance the safety and well-being of people living with SCD.
More than 100,000 Americans live with sickle cell disease, a genetic blood disorder that affects red blood cells. Acute pain episodes known as sickle cell crises are one of the most common and debilitating symptoms of SCD. These crises can be unpredictable and extremely painful, lasting from a few hours to a few weeks. They’re the number one reason people with SCD seek emergency treatment.
However, SCD patients seeking treatment for a sickle cell crisis face hurdles to getting the care they need in the Emergency Department (ED). Many ED physicians are not well versed in sickle cell disease and treatment protocols. And with the rise of the opioid crisis, ED providers are cautious about providing the powerful pain medication needed to quell a sickle cell crisis. Sometimes SCD patients are unfairly labeled as “drug seekers” by ED personnel who don’t understand the disease.
The SCDAA and MedicAlert pilot program aims to improve access to timely, effective emergency care for people experiencing a sickle cell crisis. MedicAlert Foundation is a leading nonprofit providing lifesaving medical ID and emergency response services for millions of people living with chronic health conditions.
“Delayed treatment in a sickle cell crisis can lead to long term organ damage and other health complications – not to mention the unnecessary pain the person with SCD must endure,” said Regina Hartfield, President and CEO of SCDAA. “MedicAlert has decades of experience storing critical health information and making it available to emergency personnel. We want to leverage that to improve the experience for people seeking treatment for a sickle cell crisis.”
The pilot program will provide participants with a MedicAlert digital health profile to store their health information, treatment and pain plans, medications, physician information, emergency contacts, and more. Each participant will also receive a customized Smart Medical ID Card, which provides easy access to their health information and physician prescribed pain management plan via a QR code.
The goal is to shortcut time to diagnosis and treatment, improving health outcomes from a sickle cell crisis. When seeking emergency treatment, participants can use the Smart ID Card to share their health history with ED personnel – confirming their SCD status, and providing the critical details needed for ED personnel to provide care.
“Since 1956, MedicAlert has been globally trusted by both emergency medical personnel and people living with serious health conditions,” stated Karen Cassel, MedicAlert Foundation’s President and CEO. “Through this collaboration, we hope to equip and empower SCD patients with tools to help them quickly get the care they need during a pain crisis.”
The pilot program, which will run for one year, is set to launch in September 2023 during National Sickle Cell Awareness Month. Two-hundred fifty individuals will be recruited to participate in the first round.
“We believe this program has the potential to significantly improve outcomes for people experiencing sickle cell crises,” Hartfield said. “With positive results, we’ll seek additional funding to expand the program nationally.”
“Both MedicAlert Foundation and SCDAA express our deepest thanks to Insperity, Inc. for funding this pilot through their grant program. We’re grateful for their support and commitment to improving quality of life in the communities they serve,” said Cassel. Insperity is a leading provider of scalable HR solutions for small to mid-size companies.
More details about the pilot program, including eligibility guidelines and how to apply, will be announced in late June. Anyone living with SCD who is interested in participating in the pilot should contact either their local SCDAA chapter, or email MedicAlert at sicklecellpilot@medicalert.org.
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About Sickle Cell Disease Association of America (SCDAA): The Sickle Cell Disease Association of America is a national organization working to advocate for individuals living with sickle cell disease, provide education and support, and promote research to ultimately improve the quality of life for those affected. With over 50 years of service, SCDAA plays a pivotal role in advancing the awareness and understanding of sickle cell disease. For more information, please visit www.sicklecelldisease.org.
About MedicAlert Foundation: MedicAlert Foundation is a nonprofit organization dedicated to protecting members by providing life-saving medical ID and emergency response services. For over 67 years, MedicAlert Foundation has enabled individuals with chronic health conditions to live their lives with confidence, knowing MedicAlert will help them get the care they need in an emergency. Learn more at www.medicalert.org.
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Media Contacts:
SCDAA kjacobs@bonnieheneson.com
MedicAlert Foundation jhylton@medicalert.org
