The Sacramento Observer
By Genoa Barrow
October 23, 2024

Sickle cell disease continues to get national attention. In observance of September as Sickle Cell Awareness month, the U.S. Department of Health and Human Services hosted its first Sickle Cell Disease Summit late last month.

The event, held in person in Washington D.C. and livestreamed, featured remarks from sickle cell warriors, health providers, lawmakers and other stakeholders. The theme of the summit was “Empowered and Thriving SCD Warriors and Communities” and is part of HHS’s commemoration of Sickle Cell Awareness Month.

Hosts called the summit an opportunity to connect the SCD community with new audiences around a shared vision of accelerating advancements in SCD care, research, and quality of life.

Opening remarks came from HHS Secretary Xavier Becerra.

“No one with SCD should have to fight stigma and bias to access the lifesaving care they need,” Becerra said. “Today’s summit unites experts and warriors with lived experience, all with one goal: to secure a quality life for everyone affected by this disease and ultimately end the power and hold of SCD.”

Panel discussions included “Gradually, then Suddenly: The History and Current State of SCD Therapies,” “Meeting Warriors Where They Are: Advancements in Access to Care” and “Reproductive Health and Sickle Cell.” The latter featured “Deadpool & Wolverine” actress Wunmi Mosaku, who shared her personal journey with in vitro fertilization for the first time publicly. She and her husband, both Nigerian, have the sickle cell trait, or SCT. She knew her status, but her husband only found out for sure through genetic counseling in 2020. According to the Centers for Disease Control and Prevention, if both parents have SCT, there is a 25% chance that a baby born to them will have SCD. There’s also a 25% chance that the child won’t have SCD or SCT.

Nigerian-born actress Wunmi Mosaku, center, discusses how having sickle cell trait affected her decision to have a child. Mosaku is known to American fans from roles is “Deadpool & Wolverine” and “Lovecraft Country,” a short-lived TV series produced by Sacramento native Misha Green. Photo Courtesy U.S. Department of Health and Human Services

“We were a little naive and we thought maybe we should take this opportunity to really do our homework. We learned so much,” said Mosaku, who appears in the new Ryan Coogler horror film “Sinners.”

Armed with new knowledge, the couple decided to undergo IVF with genetic testing.

“I just felt like there was so much I didn’t know and until we knew we both had the trait, then people in my community kind of talked to me about what it’s like to be a carrier or to have the disease,” Mosaku said.

The actress thanks sickle cell “warriors” for educating her.

“I am indebted to you,” said Mosaku, who gave birth to a daughter in 2023. “My family is indebted to you because I felt like I was able to make an informed decision.”

California Connections

Health and Human Services Secretary Xavier Becerra talks with 12-year-old “sickle cell warrior” Cimone Vaughan about her experience living with SCD. Vaughan, of Maryland, had her artwork featured during the summit. Photo Courtesy U.S. Department of Health and Human Services

Mary Brown, president and CEO of California’s Sickle Cell Disease Foundation, participated on a panel titled “State and Private Sector Innovations in Sickle Cell Care.” Brown spoke of learning how to advocate and push for better resources and creating 12 adult Sickle Cell Centers of Excellence, also known as Networking California for Sickle Cell Care, or NCSCC.

“People in California were dying way too early,” she said. “And frankly I was a little tired of going to funerals. I was also tired of sitting in [rooms] with a lot of well-intentioned people who talked about resolutions, but never any action. We came to this place where we had to get something done.”

Sickle cell has been in the spotlight of late. Gov. Gavin Newsom recently signed Assembly Bill 107, the Budget Act of 2024, which includes a one-time appropriation of $5 million to the California Department of Public Health to continue funding the NCSCC clinics.

Brown calls the allocation “crucial.”

“California stands as a national leader in advancing sickle cell disease care, with initiatives like Networking California for Sickle Cell Care setting a gold standard,” Brown said in a joint statement with NCSCC co-founder Dr. Diane Nugent.

“This funding represents a significant stride toward ensuring that every person affected by sickle cell disease receives the highest standard of care and support they deserve,” Dr. Nugent added.

One day after the sickle cell summit, the pharmaceutical company Pfizer voluntarily withdrew the sickle cell disease treatment Oxbryta from worldwide markets, stating “clinical data that now indicates the overall benefit no longer outweighs the risk in the approved sickle cell patient population.”

Dr. Clarice Reid receives the prestigious Assistant Secretary for Health’s Exceptional Service Medallion during the summit for her contributions to public health and her tireless advocacy for the warrior and research communities. Photo Courtesy U.S. Department of Health and Human Services

The move, Dr. Nugent said, exacerbates “an already limited supply of treatment options.”

“While Pfizer’s announcement marks a setback in the SCD treatment landscape, it also highlights the urgent – and ongoing – need to meaningfully address systemic inequities affecting the SCD community,” she continued.

Networking California for Sickle Cell Care provides specialized care to SCD patients, aiming to improve their disease management, reduce emergency room visits, and enhance their overall well-being through proactive, patient-centered treatment plans. The group has vowed to fill the gap left by this treatment withdrawal with comprehensive care options.

“People with this disease don’t want anything more than anyone else,” Brown said. “They want to live high-quality lives. They want to be able to do what they want to do.”

Editor’s note: To read stories from Senior Staff Writer Genoa Barrow’s award-winning series, “Painfully Aware: Understanding Sickle Cell and Its Impact on the African American Community,” visit SacObserver.com.