The Health Divide: Sickle cell treatment moves forward; U.S. infant death rate rises

FDA advisors support groundbreaking sickle cell therapy 

Two new treatments for sickle cell disease, a painful and deadly condition that affects more than 100,000 Americans, most of whom are Black, may be approved by the end of the year.

An FDA panel that met last week agreed one of the genome editing treatments is safe enough to move forward. The Food and Drug Administration is expected to rule on the treatment from Vertex Pharmaceuticals and CRISPR Therapeutics by Dec. 8. It will decide on another genome editing therapy from Bluebird Bio by Dec. 20.

Sickle cell disease reflects the structural racism and inequities in the American health care system more broadly. “It is a Black Lives Matter issue because it’s primarily a genetic disease that affects Black people who often also have fewer financial resources,” Oakland nurse Wendy Bloom told Momo Chang , a CHJ Impact Fund grantee, in her 2018 deep dive into sickle cell’s devastating impact on Black Americans. 

Sickle cell research has received fewer research dollars than comparable genetic conditions. Its funding is often compared to that for cystic fibrosis, a genetic disease that affects primarily white people. While nearly three times as many people have sickle cell, cystic fibrosis has received more than triple the funding. 

While treatments have improved for children — in part due to the efforts of Black activists in the ‘60s and ‘70s, Chang wrote — young adults often fall through the cracks once they age out of pediatric care. 

For people with sickle cell on public insurance, life expectancy is about 53 years.  

Pain and other symptoms often send people with sickle cell to the emergency room for help, where they face additional barriers in obtaining pain relief. “They receive treatment like they are drug addicts because they come in needing pain medication that sometimes people can get addicted to,” James Burroughs, chief equity and inclusion officer at Children’s Minnesota, told Ava Kian at MinnPost earlier this year. “They’re not treated with respect and dignity.”

Recent data indicate that white patients in pain are 26% more likely to receive opioid pain meds, such as morphine, compared to Black people. 

A bone marrow transplant is already a treatment option, but it requires patients to have a matching donor. The new genetic treatments would repair the patient’s own cells, so a donor match isn’t necessary.

But both of these potentially curative treatments share similar hurdles. The costs and the need for weeks of hospitalization, often far from home, associated with transplants already prevents some patients from accessing that treatment, and the new gene editing treatments will likely create similar hardships.

“The new therapies are also not easy to endure and come with hardships for patients, who will have to undergo chemotherapy and spend more than a month in the hospital,” writes Gina Kolata at The New York Times. “Family members are affected too — they may need to take time off work during the most intensive phase of the treatment.”

Prices for the new genome treatments are not set, but they are expected to cost millions of dollars per person — but then, so does treating an individual with sickle cell disease for a lifetime, notes Karen Weintraub at USA Today.

And some patients may not trust the latest treatment from a medical system that has failed them time and again, Kolata adds. 

With genetic therapy, there’s also a concern that the wrong genes could be altered, potentially leading to blood cancer. While this has not been observed in the clinical trials for the new treatments, the number of patients treated so far numbers in the dozens.

“The company’s data were sufficiently reassuring that the expert committee said on Tuesday they saw no reason to hold the treatment back,” Kolata writes.

Infant mortality up in Native families, high among Black communities

After trending downward for the better part of three decades, the United States infant mortality rate shot up by 3% in 2022, according to the latest data from the Centers for Disease Control and Prevention. 

The rate rose to 5.6 infant deaths per 1,000 births in 2022, compared to just over 5.4 deaths the year prior. 

Infant deaths remained highest among Black people, with nearly 10.9 deaths before the first birthday per 1,000 live births. 

Rates also rose significantly among American Indian and Alaska Native populations, from just under 7.5 deaths per 1,000 births in 2021 to nearly 9.1 deaths per 1,000 births in 2022.

The reasons for the increases are unclear. Rebounding flu and RSV infections in the wake of the pandemic wake might be a factor, reports Mike Stobbe at AP News.

“The U.S. infant mortality rate has been worse than other high-income countries, which experts have attributed to poverty, inadequate prenatal care and other possibilities,” writes Stobbe.

The deaths of infants are linked with maternity care. “Today’s data underscores that our failure to better support moms before, during, and after birth is among the factors contributing to poor infant health outcomes,” said Dr. Elizabeth Cherot, president of the March of Dimes, in a statement. 

Black women are three times more likely to die of a pregnancy-related complication than white women, due to factors including implicit bias and structural racism. 

“The wealthiest Black woman in California has a higher risk of maternal mortality than the least wealthy white woman,” writes Black midwife Jeanine Valrie Logan in a USA Today opinion piece. “It is a systemic disregard for Black lives.”

Logan adds: “It is our collective duty to transform the rhetoric of birth equity into a tangible reality where every Black woman and birthing individual receives the care they need and deserve.”

Tooth decay rates are an overlooked health disparity

Jenny Gold at the Los Angeles Times highlights the poor dental health among California children, where more than one in six children had cavities or tooth decay in the past year, according to a 2020–21 survey. 

“As with so many health issues, children from socioeconomically disadvantaged families are most at risk,” Gold writes. Latino and Black children had the highest rates of tooth decay in a 2018–2019 state survey. 

The consequences are serious: Kids with poor dental health are more likely to experience tooth pain, miss school, and perform poorly at school. 

While the dental health of California kids is among the poorest in the nation, the problem is hardly limited to a few states. One 2020 study called poor oral health “the national symbol of social inequality.”

Tooth decay is also more prevalent among American Indian, Alaska Native, and Native Hawaiian children, according to a 22-state survey by The Pew Charitable Trusts in 2022.

Many people lack dental insurance, can’t afford dental care, or can’t get the time off work to go to the dentist, according to the CDC. Lower income communities are more likely to lack access to fluoridated water, healthy foods, and public transportation to get to the dentist.

In rural parts of California, it can be difficult to find a dentist that takes Medicaid insurance, but that’s even true in some parts of Los Angeles, Gold writes.

“Some families can’t even afford to buy toothpaste or toothbrushes,” she adds. “Others don’t know the basics of dental hygiene.”

There are long-term health risks as well: oral bacteria have been connected to high blood pressure, cancer, and diseases of the heart, kidneys and liver. 

From the Center for Health Journalism

• Nov. 19 is the deadline to apply for the California Health Equity Impact Fund, designed for journalists who want to illuminate untold stories about systemic issues that block good health for Californians. Grantees receive a $2,000–$10,000 grant for reporting costs, five months of mentorship, and monthly online development and brainstorming sessions. Learn more here!
• A recent webinar, “Reporting on Alzheimer’s Unequal Toll in Communities of Color” featured Stephanie J. Monroe, vice president of the advocacy organization UsAgainstAlzheimers; Kat Stafford, global race and justice editor at Reuters; and Petra Niles, a gerontologist at Alzheimer’s Los Angeles. Watch here!
• The Lori Yearwood Fund for Reporting on Homelessness will provide grants to journalists reporting on the lives and health challenges of people who are unhoused. Find out more by emailing us at editor@centerforhealthjournalism.org or donate here. 

What we’re reading

• “Treating rural America: The telehealth solution,” by Hyacinth Empinado, STAT
• “Green spaces promote health but don’t cancel discrimination’s effects, by Erin Blakemore, The Washington Post
• “Californians who need help paying for ’round-the-clock home care are stuck on a state waitlist,” by Emily Alpert Reyes, Los Angeles Times
• “Pregnant farmworkers in California are eligible for paid time off — but many don’t know it exists,” by Jessica Kutz, The 19th
• “Medical school on Cherokee reservation will soon send doctors to tribal, rural areas,” by Arielle Zionts, KFF Health News
• “Few transplant surgeons are Black. Giving medical students a rare peek at organ donation may help,” by Lauran Neergaard, AP News
• “Johns Hopkins nursing school launches D.C. institute focused on health equity,” by Sarah True, The Baltimore Banner