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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Rep. Kamlager-Dove Introduces Bill to Protect Women in Custody After Reports Detailing Miscarriages and Neglect

The Pregnant Women in Custody Act would expand safeguards beyond the federal prison system to include women detained by U.S. Immigration and Customs Enforcement, U.S. Customs and Border Protection and the Office of Refugee Resettlement. The proposal follows reports of pregnant women being shackled, denied medical care and suffering miscarriages while in immigration detention.

Published

4 weeks ago

May 17, 2026

Oakland Post

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By Bo Tefu, California Black Media

Congresswoman Sydney Kamlager-Dove (D-CA-37) on May 7, reintroduced updated legislation aimed at strengthening protections and healthcare standards for pregnant and postpartum women held in federal custody, including in immigration detention facilities.

The Pregnant Women in Custody Act would expand safeguards beyond the federal prison system to include women detained by U.S. Immigration and Customs Enforcement, U.S. Customs and Border Protection and the Office of Refugee Resettlement. The proposal follows reports of pregnant women being shackled, denied medical care and suffering miscarriages while in immigration detention.

The legislation builds on a bipartisan version previously passed by the House during the 117th Congress. The updated bill includes new standards for healthcare access, mental health and substance use treatment, high-risk pregnancy care, family unity protections and increased federal oversight.

“Proper pregnancy care is a human right, regardless of your immigration or incarceration status,” Kamlager-Dove said in a statement. “It’s unacceptable that there are virtually no legal safeguards for pregnant women in federal custody.”

The bill would also limit the use of restraints and restrictive housing for pregnant women, improve data collection on maternal health in custody and require additional staff training and enforcement measures.

Supporters of the measure said the legislation is intended to address long-standing concerns about maternal healthcare and safety in detention settings, particularly for Black women and low-income women who are disproportionately impacted by incarceration and health disparities.

“Pregnant women in custody should never be subjected to dangerous and inhumane treatment that threatens their health, dignity, or the well-being of their babies,” said Patrice Willoughby, chief of policy and legislative affairs for the NAACP and a longtime public policy and government affairs strategist, in a statement.

A 2021 report estimated there are about 58,000 admissions of pregnant women into U.S. jails and prisons each year. Kamlager’s statement also cited a recent investigation by NBC News and Bloomberg Law that identified allegations of severe mistreatment or medical neglect involving at least 54 pregnant women or families in county jails between 2017 and 2024.

Federal policy under the Department of Homeland Security restricts the detention of pregnant, postpartum and nursing immigrants except in extreme cases. However, the agency reported that ICE deported 363 pregnant, postpartum or nursing women between January 2025 and February 2026, including 16 recorded miscarriages during that period.

The bill is cosponsored by several House Democrats and backed by organizations including the NAACP and the Vera Institute of Justice.

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How Is AI Affecting California? The State Wants You to Share Your Story

The program marks the first time the state has opened the platform to all Californians. State officials said the effort is designed to give residents a direct role in discussions about how AI should be regulated and used as the technology rapidly expands across industries.

Published

4 weeks ago

May 17, 2026

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By Bo Tefu, California Black Media

Gov. Gavin Newsom announced May 7 that California is expanding its Engaged California digital democracy initiative statewide, inviting residents to help shape future state policies on artificial intelligence (AI) and its impact on jobs and the economy.

“We’ve got to be clear-eyed about this moment: AI is moving fast, bringing enormous opportunity, but also real risks,” Newsom said in a statement. “Californians deserve a seat at the table as we shape what’s to come.”

The initiative will roll out in two phases. Beginning immediately, Californians can sign up online to share how AI is affecting their work and communities and provide ideas for possible government action. Later this summer, a smaller group reflecting the state’s workforce demographics will participate in live discussions focused on developing policy recommendations.

State officials said the goal is to identify areas of agreement among Californians and provide policymakers with public feedback as the state develops future AI regulations and workforce strategies.

Engaged California is modeled after digital democracy programs used in Taiwan and is intended to encourage structured public discussion rather than social media-style debate. Officials described the effort as a form of “deliberative democracy” aimed at helping residents engage directly in state decision-making.

“The more Californians are engaged in the democratic process, the better able we’ll be to confront the challenges we face together,” said Nick Maduros, California Secretary of Government Operations, in a statement.

The statewide launch builds on two earlier pilot programs. One pilot gathered public input following the Los Angeles firestorms to help guide recovery efforts, while another collected ideas from state employees about improving government operations.

California has positioned itself as a national leader in AI policy and development. Since 2023, the Newsom administration has introduced initiatives focused on responsible AI use in government, cybersecurity protections, workforce training and regulations targeting risks such as deepfakes and AI-generated robocalls.

The state has also partnered with companies in Silicon Valley — including NVIDIA, Google, Adobe, IBM and Microsoft — to expand AI education and workforce training programs across California schools and universities.

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California Launches Free Diaper Program for Newborns Statewide

The initiative, called Golden State Start, will provide 400 free diapers to every newborn delivered at participating California hospitals beginning this summer. The state is partnering with Baby2Baby, a California-based nonprofit that distributes essential items to children in need nationwide.

Published

4 weeks ago

May 17, 2026

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By Bo Tefu, California Black Media

Gov. Gavin Newsom announced Friday that California will launch a first-in-the-nation program providing free diapers to families with newborns, part of a broader effort to lower costs for parents and improve infant health outcomes.

The initiative, called Golden State Start, will provide 400 free diapers to every newborn delivered at participating California hospitals beginning this summer. The state is partnering with Baby2Baby, a California-based nonprofit that distributes essential items to children in need nationwide.

State officials said hospitals participating in the program will give families the diapers when they are discharged after birth, helping parents leave with an immediate supply of newborn essentials.

“Every baby born in California deserves a healthy start in life,” Newsom said in a statement. He said the program is part of California’s broader affordability efforts, which also include free school meals, universal preschool for four-year-olds and expanded after-school programs.

The announcement comes ahead of Mother’s Day and is tied to the administration’s broader CalRx initiative, which aims to reduce costs for essential products and medications. State officials said California is also exploring ways to lower diaper prices by challenging high costs from major brands.

The first year of the program will prioritize hospitals serving large numbers of Medi-Cal patients, with plans to expand to additional hospitals and birthing centers over time. Officials said the effort is intended to reduce financial pressure on low-income families and improve infant and maternal health by ensuring parents have access to clean diapers.

“California families deserve to feel supported during one of life’s more exciting, yet vulnerable transitions,” First Partner Jennifer Siebel Newsom said in a statement. She said the program would allow parents to focus on caring for their newborns instead of worrying about basic supplies.

According to Baby2Baby, one in two families in the United States struggles to afford diapers. The organization has distributed more than half a billion items to children over the past 15 years through partnerships with shelters, hospitals, foster care programs and schools.

State officials said Baby2Baby will oversee diaper purchasing, warehousing and distribution through its existing hospital and community partnerships across California.