Those afflicted with sickle cell disease and their families turned out in support of World Sickle Cell Day at West Oakland’s DeFremery Park on Sunday.
According to advocate Nivia Charles, event MC and member of the nonprofit The Pull Up, awareness of the most common inherited blood disorder in the United States is now more important than ever due to recent federal health cuts which have affected programs.
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“It’s been lovely having everyone come together on one accord helping health equity and wellness for sickle cell warriors, especially considering how overlooked we are on a day-to-day basis,” Charles said, who was born with the disease. “We already know about our illness, we need the rest of the world to be educated and activated to support us in this fight for our health and wellness.”
Sickle cell disease is caused by a mutation in the hemoglobin gene, which leads to the production of abnormal, sickle-shaped red blood cells. People are born with it if two genes are inherited, one from each parent. If they have just one gene, they’re healthy, but are a carrier of the disease.
It was discovered more than 100 years ago and affects about 100,000 Americans, most of whom are Black or Hispanic.
In April, the Trump administration announced reductions to federal health programs which support the sickle cell community. The entire staff that oversaw the Sickle Cell Data Collection Program at the Centers for Disease Control and Prevention (CDC) were terminated, according to sicklecelldisease.org. The Division of Blood Disorders and Public Health Genomics at the CDC also was eliminated.
“The extreme cutbacks this administration has made to funding and programming have been egregious,” Charles said. “The impacts of these changes could effectively dismantle decades of work and progress made in health and research for sickle cell.”
The Pull Up team member MC and sickle cell warrior Nivia Charles, right, talks with NeDina Brocks-Capla founder of Sickle Cell Anemia Awareness (SCAA) during a World Sickle Cell Day celebration at DeFremery Park in Oakland, Calif., on Sunday, June 22, 2025. Brocks-Capla’s son Kareem Jones, 36, died of the disease in 2013 and she founded the nonprofit in 2014. (Jane Tyska/Bay Area News Group)
In the Bay Area, other health care advocates living with sickle cell disease are raising concerns regarding cuts that could negatively impact research and access to care for the nearly 3,000 patients with the disease, according to NeDina Brocks-Capla, founder of Sickle Cell Anemia Awareness (SCAA).
Brocks-Capla lost her son Kareem Jones, 36, to the disease in 2013 and founded SCAA in San Francisco the following year.
“The hardest thing is for patients to get the help and the access to the quality care they deserve,” said Brocks-Capla.
Efforts to improve access to health care for people with sickle cell are now falling shorter, leading to higher costs for families and health care systems, advocates say. With proper care, people with the disease can lead healthier and more productive lives, avoiding costly health crises.
Nichelle Holmes, a Contra Costa County superior court judge who lives in Fairfield, lost her two twin daughters Elizabeth and Jacqueline to the disease, one who died of complications just last October.
“There needs to be advocacy. A lot of times medical treatment plans aren’t followed and people are suffering in a lot of pain,” Holmes said. “It’s so frustrating to have to battle that and not feel good at the same time.”
Nichelle N. Holmes, of Fairfield, right, gets a hug from The Pull Up founder and sickle cell warrior Calvanay Nunley, of Richmond, during a World Sickle Cell Day celebration at DeFremery Park in Oakland, Calif., on Sunday, June 22, 2025. Holmes has had two of her daughters die from the disease.(Jane Tyska/Bay Area News Group)
Symptoms of the disease include anemia, jaundice, pain crisis, acute chest syndrome, infections, enlarged spleen and sometimes stroke. The effects can be diminished by drinking eight to 10 glasses of water per day, taking pain medications, blood transfusions, folic acid or a combination of other medications.
Calvanay Nunley, of Richmond, started the nonprofit The Pull Up in 2020. It was meant to be a place for those with sickle cell to go for support and medical resources. She’s also the director of Camp Superstar in Livermore, a summer camp for kids with the disease.
She’s had a stroke and two brain surgeries as a result of sickle cell, receives blood transfusions every three weeks and highly encourages blood donations.
“I definitely think there needs to be more awareness and less discriminatory behaviors around sickle cell,” Nunley said. “I’ve lost so many friends to this disease and it’s really important that we get the word out.”
According to a recent University of Michigan study, quality of care among people with sickle cell is severely lacking. In many states, fewer than 10% of children with the disease receive the recommended amount of life-saving antibiotics to prevent infections. Only about one-third undergo screenings for stroke, and less than half of adults visit a hematologist within a three-year span, even though they should have multiple appointments each year.
The Pull Up team member MC Nivia Charles reads one of her spoken-word poems during a World Sickle Cell Day celebration at DeFremery Park in Oakland, Calif., on Sunday, June 22, 2025. Charles was born with the disease. (Jane Tyska/Bay Area News Group)
Charles, who will be finishing her bachelor’s degree at Howard University in Washington, D.C., in the fall, recently had to have a port put into her chest to administer the frequent blood transfusions and medications needed to keep her healthy.
“One of the biggest difficulties is how deeply sickle cell disease can completely derail you and get in the way of your trajectories and ambition,” Charles said. “When a sickle cell crisis comes up, everything comes to a screeching halt because of how excruciating the pain is.”
Former high school teacher Wanda Wiliiams, 75, of Hayward, is the founder of the Sickle Cell Advisory Council and leader of Camp Superstar in Livermore. She has outlived the average female life expectancy of 55 for a person with the disease. Doctors told her parents that she would die in puberty. She’s been on the medication hydroxyurea for 15 years, and has not had a pain crisis since.
Wanda Williams, sickle cell warrior, founder of Sickle Cell Advisory Council (SCAC) and leader of Camp Superstar, right, talks with her niece Chiaurelia Spencer, 75, of Pleasanton, right, during a World Sickle Cell Day celebration at DeFremery Park in Oakland, Calif., on Sunday, June 22, 2025. The event was sponsored by the nonprofit The Pull Up and the UCSF Benioff Children’s Hospital Oakland Sickle Cell Center of Excellence. (Jane Tyska/Bay Area News Group)
Because the disease predominately affects Black people, Williams feels like there is some stigma and lack of awareness around it.
“Sickle cell affects more than African Americans, but we’re the dominant group, and we’re just not getting the attention that other illnesses get,” Williams said. “I try to live a healthy lifestyle and maintain a positive attitude. I think people just have to be hopeful.”