Sickle Cell Disease Association of America Teams with MedicAlert Foundation to Improve Emergency Outcomes During Sickle Cell Crises

Nonprofits partner to help people with sickle cell disease get faster, better emergency care.

The Sickle Cell Disease Association of America, the leading patient organization for people with sickle cell disease, announced a pilot program with MedicAlert Foundation to enhance the safety and well-being of people living with sickle cell disease.

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 sickle cell disease. These crises can be unpredictable and extremely painful, lasting from a few hours to a few weeks. They’re the No. 1 reason people with sickle cell disease seek emergency treatment.

However, patients seeking treatment for a sickle cell crisis face hurdles to getting the care they need in the emergency department. Many emergency physicians are not well versed in sickle cell disease and treatment protocols. And with the rise of the opioid crisis, emergency department providers are cautious about providing the powerful pain medication needed to quell a sickle cell crisis. Sometimes sickle cell patients are unfairly labeled as “drug seekers” by emergency department personnel who don’t understand the disease.

The Sickle Cell Disease Association of America and MedicAlert pilot program aim to improve access to timely, effective emergency care for people experiencing a sickle cell crisis. MedicAlert Foundation is a leading nonprofit providing lifesaving medical identification 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 sickle cell disease must endure,” said Regina Hartfield, president and CEO of the Sickle Cell Disease Association of America. “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 securely 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 decrease 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 emergency department personnel — confirming their sickle cell disease status and providing the critical details needed for 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 sickle cell 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 for 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.”

Cassel said, “Both MedicAlert Foundation and the Sickle Cell Disease Association of America 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.” Insperity is a leading provider of scalable human resources 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 sickle cell disease who is interested in participating in the pilot should contact either their local Sickle Cell Disease Association of America chapter or email MedicAlert at sicklecellpilot@medicalert.org.