Health

More Sickle Cell Patients Survive, But Care Is Hard To Find For Adults

Published

10 years ago

March 27, 2016

By Erin N. Marcus , Kaiser Health News

When Janoi Burgess was a child, he thought doctor appointments were fun.

“I used to love it because they had a section where you could play games,” said Burgess, who was born with sickle cell anemia, an inherited blood disorder. “They were really nice and friendly.”

But when he turned 21, the South Florida resident could no longer go to his pediatric specialist. Instead, he “bounced around” to various adult primary care doctors, none of whom seemed well-versed in the details of his condition. When he had a painful sickle cell crisis two years later, his only choice was to go to a hospital emergency department, where, he says, he waited three hours for pain medication.

“They triage you based on severity, and pain is not something that they consider as severe” as other conditions, he recently recalled. “One doctor even said, ‘Your labs are OK so you’re not in pain.’ It was crazy and insulting at the same time.”

Burgess’ experience is not unusual among many adults with sickle cell anemia, which affects up to 100,000 people in the United States, most of them African Americans. For many years, most people with sickle cell died in childhood or adolescence, and the condition remained in the province of pediatrics. During the past two decades, advances in routine care have allowed many people to live into middle age and beyond.

“Some people with sickle cell disease are actually living to be elderly, and the majority of patients are adults,” said Dr. Wally Smith of the Virginia Commonwealth University Medical Center. “We don’t have a health care system ready for that.”

Early adulthood, a time when patients make a switch from pediatric to adult care, can be perilous for these patients. A 2010 study of 940 Dallas people with sickle cell born after 1982 reported that the period immediately after they “aged out” of pediatric care was the riskiest for death. Other research found that Wisconsin Medicaid patients with sickle cell were especially likely to rely on emergency departments for care during this transitional time period.

One explanation for the increased deaths could be that early adulthood is a time when the repeated stresses of sickle cell “catch up” with the body. But social and health system factors also play an important role.

Compared with other genetic diseases, a disproportionate number of patients with sickle cell rely on Medicaid, the federal-state health insurance program for low-income people, but finding specialists who accept Medicaid’s lower reimbursements can be difficult.

There also is an inadequate number of physicians with expertise in the condition. Few adult hematologists — blood disease specialists — focus on sickle cell, which is less lucrative than conditions such as leukemia.

“The number of hematologists available to provide that care is far too small to address the need,” said Dr. Michael DeBaun, director of the Vanderbilt-Meharry-Matthew Walker Center for Excellence in Sickle Cell Disease in Nashville, Tenn.

In addition, sickle cell day hospitals — dedicated infusion centers where patients can get intravenous treatment for acute pain episodes — have been shown to reduce hospitalizations and reduce the length of crises. Yet fewer than a dozen such centers exist nationally, according to medical experts who have studied them or set up such facilities.

Pain is a hallmark of sickle cell disease, which is caused by abnormal hemoglobin, the protein that allows red blood cells to carry oxygen to the body’s tissues. Under certain conditions, these affected red blood cells lose their characteristic disk shape and morph into rigid crescents, clogging up small blood vessels and disrupting the flow of blood. Nearly a third of adults with sickle cell disease experience pain, often moderately or severely intense, almost every day, and opiates are an important part of managing the condition. Often, physicians and nurses are skeptical of adult sickle cell patients’ motives in asking for pain medication, even though narcotic addiction is no more common in people with sickle cell disease than in the general population.

“There is no disease bigger than sickle cell in terms of bias and disrespect,” said Dr. Mary Catherine Beach, a professor of medicine at Johns Hopkins. “Many clinicians dislike taking care of people with sickle cell disease because of issues around pain management. When you add in race, it’s a perfect storm.”

For more information, go to khn.org

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COMMENTARY: The Biases We Don’t See — Preventing AI-Driven Inequality in Health Care

For decades, medicine promoted false assumptions about Black bodies. Black patients were told they had lower lung capacity, and medical devices adjusted their results accordingly. That practice was not broadly reversed until 2021. Up until 2022, a common medical formula used to measure how well a person’s kidneys were working automatically gave Black patients a higher score simply because they were Black. On paper, this made their kidneys appear healthier than they truly were. As a result, kidney disease was sometimes detected later in Black patients, delaying critical treatment and referrals.

Published

2 weeks ago

February 10, 2026

Oakland Post

Sen. Akilah Weber Pierson, M.D (D-San Diego). File photo.

By Sen. Akilah Weber Pierson, M.D., Special to California Black Media Partners

Technology is sold to us as neutral, objective, and free of human flaws. We are told that computers remove emotion, bias, and error from decision-making. But for many Black families, lived experience tells a different story. When technology is trained on biased systems, it reflects those same biases and silently carries them forward.

We have seen this happen across multiple industries. Facial recognition software has misidentified Black faces at far higher rates than White faces, leading to wrongful police encounters and arrests. Automated hiring systems have filtered out applicants with traditionally Black names because past hiring data reflected discriminatory patterns. Financial algorithms have denied loans or offered worse terms to Black borrowers based on zip codes and historical inequities, rather than individual creditworthiness. These systems did not become biased on their own. They were trained on biased data.

Healthcare is not immune.

These biases were not limited to software or medical devices. Dangerous myths persisted that Black people feel less pain, contributing to undertreatment and delayed care. These beliefs were embedded in modern training and practice, not distant history. Those assumptions shaped the data that now feeds medical technology. When biased clinical practices form the basis of algorithms, the risk is not hypothetical. The bias can be learned, automated, and scaled.

For us in the Black community, this creates understandable fear and mistrust. Many families already carry generational memories of medical discrimination, from higher maternal mortality to lower life expectancy to being dismissed or unheard in clinical settings. Adding AI biases could make our community even more apprehensive about the healthcare system.

As a physician, I know how much trust patients place in the healthcare system during their most vulnerable moments. As a Black woman, I understand how bias can shape experiences in ways that are often invisible to those who do not live them. As a mother of two Black children, I think constantly about the systems that will shape their health and well-being. As a legislator, I believe it is our responsibility to confront emerging risks before they become widespread harm.

That is why I am the author of Senate Bill (SB) 503. This bill aims to regulate the use of artificial intelligence in healthcare by requiring developers and users of AI systems to identify, mitigate, and monitor biased impacts in their outputs to reduce racial and other disparities in clinical decision-making and patient care.

Currently under consideration in the State Assembly, SB 503 was not written to slow innovation. In fact, I encourage it. But it is our duty must ensure that every tool we in the healthcare field helps patients rather than harms them.

The health of our families depends on it.

About the Author

Sen. Akilah Weber Pierson (D–San Diego) is a physician and public health advocate representing California’s 39th Senate District.

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As California Hits Aging Milestone, State Releases Its Fifth Master Plan for Aging

“California’s Master Plan for Aging started a powerful movement that is shaping the future of aging in our state for generations to come,” Gov. Gavin Newsom said in a statement, calling the initiative a “future-forward” model delivering real results for older adults, people with disabilities, and their families.

Published

2 weeks ago

February 9, 2026

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iStock.

By Bo Tefu, California Black Media

On Jan. 27, California released its Fifth Master Plan for Aging Annual Report,titled “Focusing on What Matters Most,” outlining the state’s progress and priorities as its population rapidly grows older.

The report, issued by the California Health and Human Services Agency (CalHHS), provides updates on the Master Plan for Aging’s “Five Bold Goals”: housing, health, inclusion and equity, caregiving, and affordability.

The report comes as Californians aged 60 and older now outnumber those under 18 for the first time, a demographic shift expected to accelerate over the next decade.

Launched in 2021, the Master Plan for Aging takes a “whole-of- government” and “whole-of-society” approach, coordinating state agencies, local governments, community organizations, and private partners. The annual report highlights significant milestones, including more than 100 California communities joining AARP’s Age-Friendly Network and $4 million in state funding awarded to local organizations to develop aging and disability action plans in 30 communities statewide.

The report also underscores California’s leadership at the national level, noting that dozens of states have followed its example and that federal legislation inspired by the plan was reintroduced in the U.S. Senate in December 2025.

CalHHS Secretary Kim Johnson emphasized the plan’s focus on equity and resilience amid ongoing challenges.

“The Master Plan for Aging continues to provide a vision, a focus, and a platform for collaboration,” Johnson said. “Equity is at the center of all that we do.”

Looking ahead, the report notes that by 2030, one in four Californians will be age 60 or older, positioning the Master Plan for Aging as a central framework for meeting the state’s long-term social, economic, and health needs.

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Candidates Vying for Governor’s Seat Debate at Ruth Williams–Bayview Opera House in San Francisco

The gubernatorial debate participants included Antonio Villaraigosa, former Los Angeles mayor; Matt Mahan, San Jose mayor; Betty Yee, former California state controller; Xavier Becerra, former U.S. Secretary of Health and Human Services, and attorney general of California; Steve Hilton, political commentator and political adviser; Tom Steyer, entrepreneur, and Tony Thurmond, California’s superintendent of public instruction.

Published

2 weeks ago

February 9, 2026

Oakland Post

The gubernatorial debate was hosted by KTVU’s Greg Lee, KTTV’s Marla Tellez and KTVU’s Andre Senior. The candidates are (l.-r.): Xavier Becerra, Steve Hilton, Matt Mahan, Tom Steyer, Tony Thurmond, Antonio Villaraigosa, and Betty Yee.

By Carla Thomas

On Tuesday, Feb. 3, seven candidates took the stage at the historic Ruth Williams–Bayview Opera House in San Francisco for the gubernatorial debate, hosted by the Black Action Alliance (BAA) in partnership with KTVU and sister station KTTV Fox 11 in Los Angeles.

For many voters, it marked a first opportunity to hear directly from several candidates seeking to lead the nation’s most populous state.

Crucial topics and issues addressed throughout the debate included housing, crime, immigration, climate change, health care and homelessness.

The debate was moderated by KTVU political reporter Greg Lee alongside KTVU’s Andre Senior and KTTV Fox 11’s Marla Tellez.

Candidates also addressed inflation and the rising costs across the state, impacting everything from groceries to childcare and health care.

Thurmond vowed to generate 2.3 million units of housing by placing 12 units on each parcel of available land in the 58 counties of California. Steyer agreed that billionaires should pay their fair share of taxes.

Hilton wanted to cut taxes, help working-class families, and end the Democrats “climate crusade and insane regulations.”

Yee offered a more transparent governmental approach with accountability, given the state’s debt.

Gonzalez said, “This debate was a great way to see who has great ideas and who has substance.”

“It’s important to have the debate within a community that requires the most,” said business leader Linda Fadekye.

Attendees included State Controller Malia Cohen, representatives of the National Coalition of 100 Black Women, the National Coalition of 100 Black Men, the San Francisco African American Chamber of Commerce, and Black Women Organized for Political Action, among others.

Event host, the Black Action Alliance (BAA) was established to amplify the voices of the Bay Area’s Black community, whose perspectives have too often been overlooked in politics and public policy.

Loren Taylor, CEO of BAA, said it was important to bring the event to the Bayview in San Francisco and shared his organization’s mission.

“The Black Action Alliance (BAA) stands for practical, community-driven solutions that strengthen public safety, address homelessness, support small businesses, expand affordable housing, and ensure access to quality education—issues at the heart of the Black experience in the Bay Area,” said Taylor.

California’s primary election will take place on June 2 and the general election will take place on Nov. 3.