UC San Diego Health Recognized for Health Equity in Care of Sickle Cell Crisis

“Sickle cell disease is a disease of significant health care disparities,” said Patty Maysent, CEO, UC San Diego Health. “Our team took the initiative to investigate the issue and to develop an effective telemedicine strategy and program to help patients receive patient-centered care in a timely fashion.”

During the pandemic, UC San Diego Health launched a same-day infusion program for patients with sickle cell disease in extreme pain. The outpatient program is an alternative to the emergency department. 

“Patients are typically seen on the same day of reporting symptoms and as soon as an infusion slot becomes available,” said Gopal.

Sickle cell disease is a devastating inherited blood disorder that disproportionally affects individuals of African and Hispanic descent. Patients with the condition periodically experience excruciating pain when unhealthy red blood cells block blood flow through tiny blood vessels to the chest, abdomen and joints. Over time, the lack of oxygen to organs and tissues causes permanent damage.

The condition affects approximately 100,000 Americans and occurs in approximately 1 out of every 365 Black or African-American births. The estimated life expectancy for adult patients in California is 42 to 47 years old, a decade less than the rest of the country. 

“For patients in sickle cell crisis, intense pain can be accompanied by anemia and infections leading to tissue damage and strokes,” said Gopal. “Unfortunately, these patients often face bias and discrimination from providers who incorrectly assume that requests for pain management are a ‘drug seeking’ behavior for opioids rather than a legitimate health emergency.”

Episodes of pain for these patients represent a “vaso-occlusive crisis” that must be addressed without delay to protect vital organs. Treatment may include supportive care including fluids, pain medication and occasionally antibiotics and blood transfusions.

“What we have seen as a result of implementation is that our emergency room unitization has significantly decreased,” said Gopal. “The program is an effective way to see patients in an outpatient setting while facilitating compassionate care.”

The telehealth program enables easy communication between medical providers and patients, allowing the medical team to attend to patient needs in a timely fashion, despite pressures of the pandemic. Care is coordinated among infusion and outpatient sickle cell teams, including nurse case managers, physicians, advanced care providers and schedulers.

Gopal and team hope to expand the program to further increase the number of patients treated, offer treatment after-hours and also collaborate with the emergency department in redirecting patients to the infusion center for treatment.

Adults with sickle cell disease have limited access to care in California. Recognizing this need, UC San Diego Health established a comprehensive adult sickle cell program and is part of the Networking California for Sickle Cell Care program.