Pilot Program to Improve Emergency Care for Sickle Cell Patients Is Now Enrolling Participants
Non-profits partner to help people with sickle cell disease get faster, better emergency care.
HANOVER, MD – Sickle Cell Disease Association of America (SCDAA) and MedicAlert Foundation have begun a pilot program focused on enhancing the safety and well-being of people living with sickle cell disease (SCD). The program is actively enrolling participants.
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). They are sometimes labeled “drug seekers” if they request opioids to ease their pain. And some ED providers are not well educated about SCD, a complex and multi-system disease. The goal of the pilot program is to address both hurdles, and improve access to timely, effective emergency care for people experiencing a sickle cell crisis.
How It Works
The program provides participants with a MedicAlert digital health profile to store their physician-approved pain plan, physician contact information, and other vital health data. Each participant also receives a customized Smart Medical ID Card, which accesses their health information via a QR code.
The goal is to shortcut time to diagnosis and treatment. When seeking emergency treatment, participants present their Smart ID Card to share their health history with ED personnel – confirming their SCD status, and providing the critical details needed for to provide care. Most importantly, ED providers have instant access to the patient’s individualized pain plan.
Partnering To Improve Care
“With more than 100,000 people in the U.S. living with SCD, finding an intervention to improve the speed and quality of ED care would be hugely impactful,” said Regina Hartfield, President and CEO of SCDAA. “For this program, we’re leveraging MedicAlert’s decades of experience providing medical information in emergencies to help people living with sickle cell.”
Experts in the SCD community have voiced optimism about the pilot program and its potential to improve patient care in pain crises.
“Giving patients with Sickle Cell Disease the power to share the medical plans they’ve crafted with their trusted providers at the click of a button is a game changer in reducing the stigma and the burden our Sickle Cell Warriors often have to carry,” said Sharl Azar, MD and Medical Director, Comprehensive Sickle Cell Disease Treatment Center at Massachusetts General Hospital. “It can help reshape how they access care.”
Program Details
The pilot will run for approximately one year and capture data from two-hundred fifty adults. Participants are asked to document their experiences in seeking ED care for a pain crisis both before the pilot, and visits during the pilot using the MedicAlert QR code ID card.
The program is now enrolling people living in these states: California, Connecticut, Florida, Georgia, Illinois, Louisiana, Massachusetts, Michigan, New Jersey, New York, Ohio, Pennsylvania, South Carolina, and Virginia.
“We believe this program has the potential to significantly improve outcomes for people experiencing sickle cell crises,” said Karen Cassel, CEO and President of MedicAlert Foundation. “With positive results, we’ll seek additional funding to expand the program nationally.”
How To Participate
- More details about the program, including full eligibility guidelines and how to apply, are available on the application page or www.medicalert.org/sicklecellpilot.
- Anyone living with SCD who has additional questions about the pilot should contact either their local SCDAA chapter, or email MedicAlert at sicklecellpilot@medicalert.org.
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 providing life-saving medical ID and emergency response services. For over 67 years, MedicAlert Foundation has enabled people 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
MedicAlert Foundation
Julie Hylton