Sickle Cell Disease Foundation of California Announces World Sickle Day June 19, 2016

LOS ANGELES, June 16, 2016 /PRNewswire/ -- On June 19, 2016, World Sickle Cell Awareness Day, there is an urgent call for increased services for adult with sickle cell disease (SCD) in California.

In response, in Los Angeles, where a majority of California adults with SCD live, the Sickle Cell Disease Foundation of California is proud to announce that LA County Department of Health Services will be offering clinical services specifically tailored to meet the needs of adults with SCD at the MLK Jr. Outpatient Center in the late summer of 2016.

The clinic will fill a major gap in expert health care services for over 1,000 Los Angelino adults with this devastating disorder who are not only African American, but also Hispanic, South Asian and of Middle Eastern descent.

SCD is a rare, complex, progressive, and debilitating disorder that results in excruciating, unpredictable bouts of pain, severe anemia, and early death without skilled treaters. Very few clinicians are able to manage the complications that affect adults with SCD, resulting in unnecessary treatment delays and pain, avoidable costs, and premature deaths. (The Washington Post recently ran a national story on this topic. See https://www.washingtonpost.com/national/health-science/unbearable-pain-not-enough-doctors-just-another-day-as-an-adult-with-sickle-cell/2016/03/21/f6598a5c-e655-11e5-a6f3-21ccdbc5f74e_story.html.)

Due to the loss of treatment centers and skilled healthcare providers, life expectancy is now under 40 years of age among Los Angeles adults with SCD (citation: Powars, Darleen R., et al. "Outcome of sickle cell anemia: a 4-decade observational study of 1056 patients." Medicine 84.6 (2005): 363-376). This is despite advances in care through new medications and gene therapy nationally.

"We know that there is a large community of adults with SCD in the neighborhoods served by MLK Jr. Outpatient Center," said Ellen Rothman, the Chief Medical Officer at MLK Jr. Outpatient Center.  "We are planning an innovative and collaborative approach to provide not just specialty hematology, but also primary care, mental health services, comprehensive pain management including alternative therapies, and peer navigators.  We are working with our campus partners, the Department of Mental Health and the MLK Community Hospital to provide the whole spectrum of services." 

There has been no sickle cell clinic at MLK since former U.S. Surgeon General David Satcher's SCD research center at the former King/Drew Medical Center closed decades ago. This is a sorely needed community resource. 

The development of multidisciplinary SCD services at MLK was initiated by the Pacific Regional Sickle Cell Collaborative, a new federal project that is introducing a regional approach to expand healthcare access for patients throughout eight Western United States.

Principal Investigator, Diane J. Nugent, MD, Founding President of the Center for Inherited Blood Disorders in Orange County, CA, states, "The loss of care for patients with SCD over the past two decades is a healthcare tragedy and is a consequence of our system's lack of recognition and support for  the interdisciplinary teams needed to support families and patients with complex, chronic disease.  The new MLK services are at one of many new sites needed throughout Southern California to improve outcomes and quality of life for all patients."  

"Adults with sickle cell disease deserve health care providers that understand the disease, its complications, and their pain. Knowing the MLK staff planning and providing the services gives me great confidence they will meet the community's needs," states Mary Brown, President and CEO of the Sickle Cell Disease Foundation of California, the lead community based organization in the Collaborative.

About Sickle Cell Disease Foundation of California

The Sickle Cell Disease Foundation of California (SCDFC) is the first and oldest non-profit, social service, sickle cell disease organization in the United States today.  Founded in 1957, the Sickle Cell Disease Foundation of California has maintained a viable and reputable organization for over 50 years. We address the needs of individuals with sickle cell disease and their families by emphasizing educational and support programs and services that meet the physical, psycho social and economic needs of our clients. Learn more at http://www.scdfc.org/

About MLK Jr. Outpatient Center

The Martin Luther King, Jr. Outpatient Center is named after Dr. King, a champion of equality for all people and an advocate for health care. Following the 1965 Watts Riots, a commission reported a lack of access to health services as one of the contributing factors to the civil unrest, leading to a task force that laid the groundwork for a County-run, full-service hospital serving South Los Angeles. MLK Hospital opened its doors in 1972 and served as a teaching institution for medical students completing their graduate medical education. In 2007, the hospital was transitioned to a Multi-Service Ambulatory Care Center offering a full spectrum of primary and specialty services.  The organization moved into a brand new facility in 2014 under a new name, MLK Jr, Outpatient Center.  The leaders and staff are committed to providing compassionate, high-quality care that improves the health of patients and their families. http://dhs.lacounty.gov/wps/portal/dhs/mlk

The Pacific Sickle Cell Regional Collaborative is funded through a grant from the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Sickle Cell Disease Treatment and Demonstration Program. We are one of four regional grantees in the United States, and we are further assisted by the National Institute for Children's Health Quality. Goals include increasing the number of providers who are well-educated about sickle cell disease care and improving access to the best care for children and adults with sickle cell disease, no matter where they live or seek care in the region. http://pacificscd.org/

Contact:

Mary Brown, President

Sickle Cell Disease Foundation of California

Phone: (909) 743-5226 or (310) 693-0247; Email: [email protected]

http://www.scdfc.org/

Ellen Rothman, Chief Medical Officer

MLK Outpatient Center, Los Angeles County Department of Health Services

Phone: (424)338-1501; Email: [email protected]

http://dhs.lacounty.gov/wps/portal/dhs/mlk

SOURCE Sickle Cell Disease Foundation of California; MLK Jr. Outpatient Center, Los Angeles County Department of Health Services; Pacific Sickle Cell Regional Collaborative

Related Links:

SCDC Data Report

Related Files

World Sickle Day Press Release LA 6 16 16.docx

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SOURCE Sickle Cell Disease Foundation of California