The Health Divide: Black kidney patients bumped up waitlist, same-sex couples may get IVF coverage

Published on
April 8, 2024

Justice restored for Black patients left off kidney transplant waitlist

A racially biased medical test meant more than 14,000 Black kidney patients weren’t placed appropriately on the organ transplant waitlist, an error that is now being corrected, reports Lauran Neergaard at AP News

The problem was a test called estimated glomerular filtration rate, which tests the speed at which creatinine, a waste molecule, is filtered by the kidneys. Until recently, labs would calculate the value differently for Black patients, based on the incorrect belief that Black people had higher muscle mass than other ethnicities. 

As a result, the formula overestimated Black patients’ kidney function by up to 16%. That made many people’s kidney health look better than it was, rendering them ineligible for a spot on the transplant list until they got sicker, or putting them further down on the waitlist.

Black people in America are more than three times as likely to experience kidney failure as white people, and they make up about 30% of the people on the kidney waitlist.

The best organ match is often from someone of the same race, and Black people are less likely to receive an organ: In 2021, nearly half of waitlisted white patients got transplants, compared to less than a third of Black patients, WebMD reported in 2023. On average, Black patients wait a year longer for a kidney than white ones.

Social factors — income, insurance, transportation, housing — can also make it harder for ethnic minorities to get a spot on the transplant list, as WebMD reported.

Children in need of a kidney transplant may be affected by inequities as well, with some reports suggesting Black children are referred later for transplants and spend more time on dialysis. Changes to the kidney allocation system in 2014 reduced disparities in the time between the start of dialysis and transplant surgery for children, according to a 2021 study.

The biased kidney test is one example among many medical formulas or calculators that are unfairly adjusted for race, notes Neergaard. 

But there is progress. For example, physicians are not supposed to use race anymore in calculations of heart disease risk or the danger of vaginal birth after caesarian section. 

But, she adds, “The kidney saga is unique because of the effort to remedy a past wrong.”

The National Kidney Foundation, American Society of Nephrology and United Network for Organ Sharing prompted the switch to a race-blind formula a few years ago. Hospitals then had to look back to determine which Black kidney patients were affected by the disparity, and shorten their wait time accordingly. 

This led to updates on the wait list positions of more than 14,300 Black patients, and more than 2,800 of those have now received a new kidney.

“Lots of time when we see health inequities, we just assume there’s nothing we can do about it,” Dr. Michelle Morse, New York City’s chief medical officer, told AP. “We can make changes to restore faith in the health system and to actually address the unfair and avoidable outcomes that Black people and other people of color face.”

Being young, Black, rural and male means high suicide risk, study says

The suicide rates among young Black men in rural regions are “alarming,” reports Clayton Gutzmore at The Atlanta Voice.

recent study found that one in three Black men from rural Georgia recently had thoughts of suicide or death. The study surveyed 504 Black men three times each, from their late teens through their early 20s.

The study found suicidal ideation correlated with experiences of childhood deprivation and adversity, as well as racial discrimination. Black boys in rural areas are more likely to experience trauma, lack of resources and economic distress than white boys, writes Gutzmore.

Those experiences lead to difficulties in forming relationships and isolation, “which in turn can prompt thoughts of death and suicide,” he writes. But the young men in that situation may have no one they trust to turn to.

“The system is systemically failing these men, from exposing them to childhood adversity to insufficient support in adulthood to keep them alive,” said Michael Curtis, a research fellow at Emory University and co-author of the study. “There’s no one attempting to address their issues.”

More than four times as many Black men die of suicide as Black women, but women are hardly immune to the effects of childhood adversity and structural racism. 

Suicide rates among female Black teens and young adults went up between 2013 and 2019, according to a study published in late 2023

The authors of that study, from Columbia University, suggested in a press release that causes might include cyberbullying, violence, and lack of support systems.

LGBTQ+ couples may gain insurance coverage for in vitro fertilization

In 43 states, in vitro fertilization isn’t covered by insurance for same-sex couples, but that could change, reports Nada Hassanein at Stateline.

That’s due to an update in how the American Society for Reproductive Medicine defines “infertility.”

The term used to apply to heterosexual couples who couldn’t conceive after a year of trying. But as of October 2023, the Society’s definition was expanded to cover people who require medical intervention to conceive.

“All persons, regardless or marital status, sexual orientation, or gender identity, deserve equal access to reproductive medicine,” Dr. Jared Robins, CEO of the American Society for Reproductive Medicine, said in a release at the time.

In addition, the federal departments of Defense and Veterans Affairs announced recently they would cover IVF without consideration of sexual orientation or marital status. 

The change came in response to a federal lawsuit in 2023, but it could have far-reaching implications, Hassanein writes.

“The federal government is the largest employer in the country, so if they’re providing these types of benefits, it definitely adds pressure on other employers and states to do the same,” said Betsy Campbell, chief engagement officer of the nonprofit RESOLVE: The National Infertility Association.

The District of Columbia will require insurers to cover IVF more broadly starting in 2025, and California, Connecticut, Massachusetts, and Rhode Island are all considering similar mandates that would apply to same-sex couples.

While some lawmakers question the expanded definition of infertility, advocates say it’s a matter of equity.

“It is discriminatory to say, ‘You don’t get the same benefit as your colleague simply because you have a same-sex partner,’” said Dr. Mark Leondires, medical director at Illume Fertility in Connecticut. “I don’t think anybody in the LGBTQ community is asking for more. They’re just asking for the same benefit.”

From the Center for Health Journalism

April 10 is the deadline to apply for the National Fellowship, which helps journalists report on the health, welfare and well-being of children, families and communities. The fellowship includes a four-day in-person learning intensive, reporting grants of $2,000–$10,000, and five months of professional mentorship and skills-building workshops. Find out more here.

April 11 is the deadline to apply for the Domestic Violence Symposium and Impact Reporting Fund for journalists covering domestic violence in California. Grantees receive reporting grants of $2,000–$10,000 and five months of professional mentorship. Learn more here.

On April 26, 10–11 a.m. PDT, the Center will host a webinar, “Can the Child Welfare System be Saved?” We’ll explore the ongoing crisis, the latest efforts at reform, and how journalists can tell urgent stories of young lives and families at risk. Panelists include JooYeun Chang, director of child well-being at the Doris Duke Foundation; Sixto Cancel, founder and CEO of Think of Us, a nonprofit dedicated to transforming the child welfare system; and Roxanna Asgarian, an independent journalist and author of the 2023 book “We Were Once a Family: Love, Death, and Child Removal in America.” Sign-up here!

What we’re reading

  • “Judge orders timely housing for migrant children waiting at border,” by Emily Baumgaertner, The New York Times 
  • “Too many U.S. women disrespected, mistreated during childbirth,” by Dennis Thompson, HealthDay
  • “Medical debt affects much of America, but Colorado immigrants are hit especially hard,” by Rae Ellen Bichell, KFF Health News, and Lindsey Toomer, Colorado Newsline
  • “Lawsuit seeks to force ban on menthol cigarettes after months of delays by Biden administration,” by Mathew Perrone, AP News
  • “Girls’ mental health suffered the most during pandemic, data shows,” by Katie Kindelan, Good Morning America
  • “Survivors sidelined: How Illinois’ sexual assault survivor law allows hospitals to deny care,” by Kate Martin, APM Reports
  • “First Opinion: I saw the promise of diversity efforts in health care. A moment later I saw its critical gaps,” by David Velasquez, STAT