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Health Equity Forum: Ethnic Partner Spotlight – February 2016

California Black Health Network Championing Advocacy for Sickle Cell Disease Patients

By Sandra Poole, Interim President/CEO, California Black Health Network

In an effort to promote health equity and to advocate for patients with blood disorders, the California Black Health Network (CBHN) will be working this year to improve the health status of people with Sickle Cell Disease (SCD).

This disease overwhelmingly affects the African American community and people of color: 89% of all babies born with SCD in California between 2004 and 2008 were Black.[1] Likewise, 1 in 14 African Americans or about 8% of the total African American population, are carriers of the disease.[2]

Sickle Cell Disease is an inherited blood disorder that affects hemoglobin, a protein that allows red blood cells to carry oxygen to all parts of the body.[3] When a person has SCD, the normally round red blood cells are hard and C-shaped, like a sickle tool. These “sickle cells” can get stuck in blood vessels, which leads to chronic pain episodes and various health problems.

More than 72,000 children and adults suffer from Sickle Cell Disease, and 2 million Americans carry the trait. There are an estimated 7,000 people living with SCD in California.[4] The life expectancy is about 42 and 48 years for men and women respectively, and this has not changed for the past 20 to 30 years. This trend demonstrates that significant health care changes need to be made in order to increase the life expectancy and quality of life for populations affected by SCD.

Currently, there are serious access to care issues for people with SCD. SCD patients with Medi-Cal must depend on those few physicians who are willing to take Medi-Cal reimbursement for their care. In California, less than five adult physicians are trained to care for people with sickle cell disease. Additionally, the standard of care required to prevent complications from SCD is too expensive to provide optimum care under current Medi-Cal reimbursement rates. As a result, many physicians feel it is not worthwhile to care for SCD patients, as reimbursement does not cover the extra time and interactions required for appropriate SCD treatment. We believe that increased physician reimbursement and training could greatly reduce morbidity and mortality of Sickle Cell Disease patients.

The California Black Health Network in collaboration with supporting partners are researching a “carve-out” for patients who have Medi-Cal in order to increase the reimbursement for cost of care. A carve-out would set aside state funds for the care of patients with Sickle Cell Disease. Hemophilia, another blood disorder, already has a Medi-Cal carve out in order to prevent Medi-Cal managed care, which has insufficient rates for the clotting factor medications that many patients need. CBHN is taking the lead in advocating administratively while simultaneously working with the Legislature on this issue. Please join us in our effort to promote a healthier California.


[1] Facts for the Public - CDC

[2] Genetic Services Policy Project

[3] Facts for the Public- CDC

[4] Sickle Cell Disease in California, 2014- California Rare Disease Surveillance Program/ Public Health Institute