Sickle Cell ‘Warriors’ Demand Dignity And Dollars At State Capitol
April 29, 2026
At California Sickle Cell Advocacy Day, patients and families rally at the state Capitol, urging lawmakers to invest $15 million in community services and adopt evidence-based care standards.
By Genoa Barrow, Senior Staff Writer | The Observer
California Sickle Cell Advocacy Day brought dozens of “warriors” — people living with the disease or trait — and their families to Sacramento this week urging legislators to commit to continued, crucial funding.
Held on April 20, participants spent the day meeting with legislators and sharing their stories outside the Capitol. They carried colorful signs and turned heads chanting, “Our pain is real,” “Fund sickle cell” and “Warrior lives matter.”
With 7% of the nation’s estimated 100,000 sickle cell disease (SCD) patients residing in California, the state with the highest mortality rate, host Dr. Carolyn Rowley said awareness and support is crucial. The day’s central request was an increase in state support: $15 million over the next three years to sustain and expand community-based sickle cell services throughout California.
Dr. Rowley is the founder and director of the Cayenne Wellness Center and Children’s Foundation, a nonprofit that focuses on accessible care, patient advocacy, caregiver support, and education. She was diagnosed with SCD at age 2. The hospital her parents initially took her to hadn’t even heard of it at the time.
Decades later, she started Cayenne Wellness in 2000 because “the landscape was barren for adults.”
“It’s 26 years now and we’re still going strong,” Dr. Rowley said. “We’re educating both the warriors and the providers.”
She credits the activation of community health workers throughout the state, as well as partnerships with the Sickle Cell Centers of Excellence located in cities like Los Angeles, Fresno, San Diego and Sacramento as making a difference.
The specialized centers were established through $15 million from the 2019-2020 state budget. In subsequent years, legislative support continued, with $5 million approved in 2024 to sustain such centers. The state also has promoted long-term solutions, notably through the California Institute for Regenerative Medicine (CIRM), which has invested more than $65 million into SCD research, and a 2025 initiative to expand Medi-Cal access to gene therapies.
Dr. Rowley is optimistic.
“We were funded three years ago. I asked for $14 million and they gave us $10 [million]. It’s three years later and now I’m asking for $15 [million] and I’m hoping to get the $15 [million].
“We offer free mental health services, free transportation to the hospital, free child care because sometimes warriors don’t go to the hospital. We also have what we call the CAP program, Client Assistance Program, where we actually help them pay their rent. That’s a big one.”
Kenneth “KC” Carson, a warrior living in Los Angeles, was among those who shared personal stories of the disease and the need for support.
“It’s such a complicated disease,” said Carson, whose crises have affected his liver and kidneys and caused him to lose vision in his left eye. “It’s really a lifelong interaction with the medical community, who aren’t well educated and trained [on SCD], so that’s always a challenge for us.”
Funding, he adds, will increase advocates’ ability to create educational partnerships with medical organizations and professionals and increase their ability to aid in better outcomes for patients.
Carson praised Cayenne Wellness for providing knowledgeable, compassionate, and comprehensive treatment. “They’ll come and get you in the middle of a crisis … and get you to the hospital and make sure you’re well.”
