By Antonio Ray Harvey, California Black Media
Representatives of the Cayenne Wellness Center, a leading advocate for California’s sickle cell community, delivered a petition with more than 1,000 signatures to Gov. Gavin Newsom’s office on Aug. 14. The petition calls on state leaders to provide $15 million over the next three years to support care for people living with the genetic disorder.
Dr. Carolyn Rowley, founder and executive director of the Cayenne Wellness Center and Children’s Foundation, said the investment would sustain and expand vital community-based wraparound services as previous state and federal grants expire.
Sickle cell disease is a genetic blood disorder that causes red blood cells to become hard and sickle-shaped, potentially blocking blood flow and triggering severe pain. In the United States, the disease is most common among Black Americans, occurring in about 1 in every 365 Black births and an estimated 3% to 9% of Hispanic or Latino births, according to the U.S. Centers for Disease Control and Prevention (CDC).
Founded in 2000 and headquartered in the Los Angeles area, Cayenne Wellness Center is a statewide nonprofit dedicated to improving the quality of life of Californians living with sickle cell disease, as well as their families and caregivers. The organization also works with local health care providers.
Its programs include no-cost mental health and spiritual counseling, transportation assistance, financial aid and respite care. The center also provides home visits, care coordination, trauma-informed support, health education and trusted guidance.
“We touch upon 1,200 persons living with sickle cell across the state,” Rowley told California Black Media (CBM). “That’s seven community health workers regionally, including Los Angeles, San Diego, Inland, and Orange counties. That includes Northern California and Central California. We also have one health worker for Spanish-speaking clients only. And our clients receive no-cost mental health support.”
In July 2026, Newsom signed Assembly Bill (AB) 109, the “Budget Act of 2026,” approving a five-year, $30 million commitment to support sickle cell care statewide. California initially awarded a $15 million grant in 2019 that was intended to last three years.
Rowley, who also lives with sickle cell disease, said Cayenne Wellness Center has received federal funding since 2015, but that support ends Aug. 31. Three years ago, the center received $10 million from the state to expand its services. That funding also will soon expire.
“It will end unless we’re able to ask, convince (state leaders) to invest in what we do, which ultimately is taking care and giving people quality of life and dignity,” Rowley said.
Mary E. Brown, president and CEO of the Sickle Cell Disease Foundation (SCDF), is a partner in the fight advocating for sustained state funding for specialized medical care and community support networks.
In a recent commentary, Brown warned that grant funding for a specialized 12-clinic network was ending, threatening continuity of care for more than 1,100 adults. She wrote that the programs have proven effective by integrating community health workers and reducing preventable hospitalizations and emergency room visits.
“Sickle cell disease is chronic, painful, and complex. Effective management often requires coordination among hematologists, primary care providers, pain specialists, behavioral health professionals, and social services,” Brown wrote. “Because sickle cell disease primarily affects Black communities, longstanding inequities in our health care system continue to shape patient experiences and outcomes.”
An estimated 9,000 to 11,000 Californians have the disease. Data from organizations such as the Sickle Cell Disease Foundation of California and other public health trackers show that Black or African American patients account for 83% to 85% of all cases in the state.
More than 30% of Californians with the disease live in Los Angeles County. San Bernardino and Sacramento counties and the San Francisco Bay Area also have large sickle cell patient populations, Rowley said.
According to its website, Cayenne Wellness Center seeks to reduce deaths from the disease by helping patients navigate the health care system. Its team provides expert care, mental health counseling, patient advocacy and community engagement.
Dorian Archie, spokesperson and assistant program manager at the center, helped deliver the petitions to the governor’s office. Community advocates, attorneys and Devon Tarriel, a sickle cell patient from Davis, joined him.
Archie was diagnosed with the disease at birth and has endured excruciating pain, inadequate medical care and life-threatening shortages of compatible blood.
A prominent community activist who describes himself as a “sickle cell warrior,” Archie has worked with organizations including the American Red Cross. His advocacy draws on his experience transforming personal hardship into efforts to change public policy.
Archie told CBM that losing vital funding would jeopardize critical, no-cost wraparound services for thousands of individuals and families affected by sickle cell disease.
“Cayenne was literally a hand in the darkness that pulled me out during a time when I was struggling greatly with the disease,” Archie told CBM. “Sickle cell can be like a revolving door. A revolving door that becomes a cycle of pain, drugs, hospital visits and doctors. It becomes your life. That’s not really living…it’s surviving.”
Archie has received more than 50 life-saving blood transfusions. He is among thousands of sickle cell patients who fear waiting in severe pain for hours because hospitals lack adequate supplies of closely matched blood. He also worries that insufficient funding could hinder blood drives aimed at recruiting donors in Black and Brown communities.
“An organization like Cayenne Wellness Center creates resources so that sickle cell patients don’t have to worry about those things when you’re in a state where your body is literally beating you to death from the inside out,” Archie said. “No one has any idea what a sickle cell warrior has to do to get out of bed and do things that people take for granted.”
