Sickle Cell Disease: Data Saves Lives

“One minute I’d be fine, the next minute I’d be in pain. It would just come out of nowhere,” says Tywan Willis. “I would have pain in my lower back, my shoulders, and sometimes in my legs. I can’t describe it. I just know it’s a really bad pain that I get.”

Tywan has sickle cell disease (SCD), an inherited blood disease that can run in families and causes abnormal, sickle-shaped red blood cells. Pain is the most common complication of SCD, and the top reason people with SCD go to the emergency room or hospital.

Tywan is a regular patient at a new sickle cell clinic within the Martin Luther King, Jr. (MLK) Outpatient Center* in Los Angeles (LA). The Sickle Cell Data Collection (SCDC) program** in California, which is funded through the CDC Foundation, and has been collecting information to monitor the long-term trends in diagnosis, treatment, and access to health care for people with SCD since 2010, provided data that highlighted the strong need for comprehensive care for adults with SCD in LA County.  These data, together with the determination and hard work of many partners, lead to the establishment of the clinic in order to address those needs.

Identifying a Community Need

The SCDC program found that 1 in every 2 adults with SCD in California (about 1500 people) live in LA County. In October 2015, a team of SCD experts used these data to inform LA County’s Department of Health Services about the urgent needs of the SCD community. The data showed no places in the county where adults with SCD could receive quality, comprehensive, and coordinated care. The emergency department was the only option for the many patients who did not have access to doctors who understood the complexities of SCD.

Data on patients with SCD in LA County were mapped by ZIP code. The map showed that most patients with SCD in the county lived within five miles of the MLK Outpatient Center. This new information presented an opportunity to create a clinic that focused on the needs of people with SCD within a medically underserved area.

Providing Comprehensive Care

The SCD clinic at the MLK Outpatient Center opened in August 2016, only 10 months after sharing the data from the SCDC program with LA County health officials. The clinic provides comprehensive care to patients with SCD, whom often have other health problems in addition to those related to SCD.

During each visit, clinic patients see both a hematologist (a doctor who specializes in blood disorders) and a primary care provider. The hematologist focuses on SCD-specific needs, helping to reduce health issues and prevent early death. The primary care provider manages health problems unrelated to SCD, such as diabetes and high blood pressure. “We complement each other,” says Susan Claster, the clinic’s hematologist. “Having the primary care provider sitting with me, we cover 90% of what the patient needs and it’s very efficient.”

This combination of expertise effectively addresses the complex health needs of patients with SCD.

The clinic provides access to complementary health services, such as acupuncture, yoga, and exercise classes. Behavioral therapists are available to help with mental health issues related to SCD, such as anxiety and depression. In addition, Patient Navigators guide patients through the clinic process and make their experience as stress-free as possible.

“Since I’ve been going to this clinic, I’ve learned a lot of new things that I didn’t know about sickle cell. They have taught me what to do when I’m in pain and how to treat it. It really works. They’re really good with their patients,” says Tywan. “When I walk in the clinic, they say ‘Hi, Tywan!’ They love me,” he adds with a laugh.

In June 2017, the SCD clinic at the MLK Outpatient Center received the national 100 Brilliant Ideas at Work Award from the National Association of Counties for their new approach to closing the healthcare gap for adults with SCD in South LA.

Tywan is just 1 of about 100,000 people in the United States who have SCD and many of them do not have access to adequate care. The SCD clinic at the MLK Outpatient Center is one example of how public health data and the combined actions of stakeholders can serve the needs of a community and improve the lives of people living with SCD.

*The clinic planning, community health workers, and sickle cell nurse educator, were made possible by a grant awarded to the Center for Inherited Blood Disorders (CIBD) in Orange, California to create the eight state “Pacific Sickle Cell Regional Collaborative (PSCRC).”PSCRC is a Sickle Cell Disease Treatment Demonstration Program supported by the Health Resources and Services Administration.

**The SCDC program is made possible by the CDC Foundation’s partnership with CDC’s Division of Blood Disorders, the California Rare Disease Surveillance Program, the Georgia Health Policy Center, the Association of University Centers on Disability, Pfizer Inc., Bioverativ, and Global Blood Therapeutics.

***The map, indicating persons with Sickle Cell Disease age 15-45, was created by University of California Los Angeles Clinical and Translational Science Institute staff member, Efren Aguilar. The data sources are the Sickle Cell Disease Foundation of California and the Center for Inherited Blood Disorders.

Learn More

• CDC: SCDC program
• CDC: Sickle Cell Disease
• Infographic: 5 Facts You Should Know About Sickle Cell Disease