Sickle Cell Disease Archives | MedicAlert Foundation

Improving Emergency Care for Children in a Sickle Cell Crisis

jhyltonmedicalertorg — Fri, 10 May 2024 18:23:44 +0000

Breaking Down Barriers: Improving Emergency Care for Children in a Sickle Cell Pain Crisis

Non-profits partner to help children with sickle cell disease get faster, better emergency care.

Monroe, LA – Every parent of a child with sickle cell disease dreads a visit to the emergency room when their child has a sickle cell pain crisis. Not just because their child is in extreme pain – they also know that getting emergency department care for their child can be a battle. To help children with sickle cell disease (SCD) and their families get better care in the emergency department (ED), MedicAlert Foundation and Northeast Louisiana Sickle Cell Anemia Foundation (NELASCAF) launched a pilot program to enhance the safety and well-being of children with SCD in northeast Louisiana. NELASCAF, a service organization, focuses on supporting, empowering, and providing high quality resources for people living with sickle cell disease in northeast Louisiana. This joint program is supported by the Louisiana Department of Health (LDH).

About sickle cell crises

Sickle cell disease is the most common inherited red blood cell disorder in the United States, affecting an estimated 100,000 people. It is usually diagnosed through routine screening at birth. Most children with SCD show symptoms in their first year of life. One of the most common and debilitating symptoms of SCD are acute pain episodes known as sickle cell crises. These crises can be unpredictable and excruciatingly painful, lasting from a few hours to a few weeks. They’re the number one reason people with SCD seek emergency treatment. Poorly managed pain crises contribute to tissue death, organ damage, and other long term health effects. However, SCD patients seeking treatment for a sickle cell crisis face hurdles to getting the care they need in the Emergency Department (ED). Because most patients with SCD are Black, they encounter inherent bias that impacts their treatment. In a pain crisis, opioids are often needed to relieve the child’s suffering. As a result, the child or their parents may be labeled as “drug seeking” and face an extended wait for care. In addition, SCD is a complicated disorder. Sometimes, ED providers lack the knowledge or training to make fast, effective treatment decisions for someone in an acute pain crisis.

Partnering for better care

The pilot program’s goal is to break down these barriers and improve access to timely, effective emergency care for children experiencing a sickle cell crisis.

“For people with SCD – especially children – pain crises are a frightening, debilitating experience. One child described the pain as ‘being stabbed over and over for hours or days.’ Anything we can do to speed their care is a win,” said Donna Thaxton, Executive Director of NELASCAF. “Providing ED physicians with the child’s SCD pain plan upfront helps them make the best treatment decisions for their patient. It’s why we’re so excited to partner with MedicAlert on this effort.” MedicAlert Foundation is a leading nonprofit providing lifesaving medical ID and emergency response services for millions of people living with chronic health conditions. “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 CEO and President. “Our goal is to equip and empower SCD patients and their families with tools to help them quickly get the care they need during a pain crisis. This program aligns perfectly with our mission of protecting lives by providing vital medical information in an emergency.”

How it works

The program provides three tools for children with SCD in NELASCAF’s Region 8 area. First, a MedicAlert digital health profile. Here, parents store their child’s physician-approved pain plan, contact information for their hematologist, and other vital health data. To communicate this to ED providers during a pain crisis, parents carry a customized Smart Medical ID Card, which links to their child’s MedicAlert health profile via a QR code. In addition, each child gets a wearable QR Code Medical ID bracelet, making the child’s health information available to teachers, coaches, and other authority figures in case there is a medical emergency under their supervision. The purpose is to shortcut time to diagnosis and treatment by providing vital information upfront in the ED. When seeking emergency treatment, the child’s parent or guardian present the Smart ID Card to share health history with ED personnel. This way, they can easily confirm their child’s SCD status, share their specialist-approved pain plan, and provide the critical details needed for providers to deliver faster, better care.

How to participate

The pilot will run for one year. NELASCAF is recruiting families with children who have SCD in their service area to participate. There is no cost for participation. All participants receive the MedicAlert membership, Smart Medical ID Card, and QR code Medical ID free of charge. In exchange, kids and their parents document their experiences in seeking ED care for a pain crisis – both with and without the MedicAlert ID card. “We believe this program has the potential to significantly improve outcomes for children experiencing sickle cell crises,” Thaxton said. “With positive results this program will be as a model for other organizations within the state and beyond to duplicate.” More details about the program, including full eligibility guidelines and how to apply, are available at medicalert.org/nela/application. Parents of children with SCD in NE Louisiana who have questions about the pilot should contact NELASCAF at 318-322-0896 or MedicAlert at nelapilot@medicalert.org.

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Pilot Program to Improve Emergency Care for Sickle Cell Patients Is Now Enrolling Participants

jvillanuevamedicalertorg — Mon, 11 Dec 2023 14:06:07 +0000

Sickle Cell Disease

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 Emergency Care For Sickle Cell

“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 with SCD in all 50 states.

“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.

jhylton@medicalert.org

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Leading Sickle Cell Organization and MedicAlert Foundation Launch Pilot Program to Improve Emergency Care During Sickle Cell Pain Crises

jvillanuevamedicalertorg — Wed, 20 Sep 2023 14:48:33 +0000

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 national organization and voice for people with sickle cell disease (SCD), today launched a pilot program with MedicAlert Foundation to enhance the safety and well-being of people living with sickle cell disease (SCD).

However, SCD patients seeking treatment for a sickle cell crisis face hurdles to getting the care they need in the Emergency Department (ED). The goal of the pilot program is to improve access to timely, effective emergency care for people experiencing a sickle cell crisis.

The goal is to shortcut time to diagnosis and treatment. When seeking emergency treatment, participants will present their 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.

“With more than 100,000 people in the U.S. living with SCD, finding an intervention to help 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 – as well as MedicAlert’s visibility in the medical community – to help people living with sickle cell.”

MedicAlert Foundation is a leading nonprofit providing lifesaving medical ID and emergency response services for millions of people living with chronic health conditions.

“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. “We’re pleased to launch this pilot during Sickle Cell Awareness Month. Our hope is to equip and empower SCD patients with tools to help them quickly get the care they need during a pain crisis.”

The pilot will run for one year. Two-hundred fifty adults in states with significant sickle cell populations are being 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.”

More details about the program, including full eligibility guidelines and how to apply, are available at 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 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
Kyri Jacobs
kjacobs@bonnieheneson.com

MedicAlert Foundation
Julie Hylton
jhylton@medicalert.org

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