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.”