Grant funding equips IU Health to help ease the excruciating pain of sickle cell disease

Patients suffering from sickle cell disease (SCD) and the excruciating pain that is its primary symptom will soon see relief, thanks to a $29,680 grant from the Association of Health Opportunity Through Partnership in Education (HOPE) Foundation to IU Health Foundation.

The grant will fund “coping kits” for children and adults being treated for SCD at IU Health Simon Cancer Center. The kits will be duffel bags packed with pain-mitigating supplies, provided to patients and their families to use at home and as “go bags” in the case of hospitalizations. The kits will reinforce provider lessons on pain management and will be especially valuable to our many patients who cannot afford to buy these items on their own.

SCD, the most common inherited hematologic disorder in the world, affects at least 1,600 children and adults in Indiana, who are predominantly Black. SCD distorts red blood cells from their healthy round shapes into sickle, or crescent moon, shapes, which can get rigid and sticky and can slow or block blood flow. People with SCD may have severe anemia, frequent infections, stroke and organ dysfunction—but the most common and debilitating complication is pain. SCD pain varies in frequency and intensity, but can negatively impact school/work attendance, social functioning, physical activity and mobility, and can increase negative emotions including fear, uselessness and helplessness. 

Opioids are the mainstay of treatment for pain caused by SCD, but evidence supports the use of nonpharmacologic therapies—including heat, sleep/sound machines and distractions—to manage psychological and social complications of pain. The HOPE Foundation funding will equip IU Health with heatable stuffed animals, electric heating pads, sleep masks, noise machines, sippy cups and water bottles, digital thermometers to monitor for fever, magnets printed with emergency contact information for the Sickle Cell Program, journals and pens children can use to draw pictures that express emotions they may have trouble verbalizing, and duffel bags. The SCD team will pack a bag with supplies appropriate for each patient, then present and explain the contents to patients and their caregivers, if needed.

The project will be led by Seethal A. Jacob, MD, MS, MS, FAAP, director of the Comprehensive Pediatric Sickle Cell Program at Riley Hospital for Children and an assistant professor at Indiana University School of Medicine.