For Brianna Henderson, birth control isn’t just about preventing pregnancy.
The Texas mother of two was diagnosed with a rare and potentially fatal heart condition after having her second child. In addition to avoiding another pregnancy that could be life-threatening, Henderson has to make sure the contraception she uses doesn’t jeopardize her health.
For more than a decade, a small team of people at the Centers for Disease Control and Prevention worked to do just that, issuing national guidelines for clinicians on how to prescribe contraception safely for millions of women with underlying medical conditions — including heart disease, lupus, sickle cell disease, and obesity. But the Department of Health and Human Services, which oversees the CDC, fired those workers as part of the Trump administration’s rapid downsizing of the federal workforce.
It also decimated the CDC’s larger Division of Reproductive Health, where the team was housed — a move that clinicians, advocacy groups, and fired workers say will endanger the health of women and their babies.
Clinicians said in interviews that counseling patients about birth control and prescribing it is relatively straightforward. But for women with conditions that put them at higher risk of serious health complications, special care is needed.
“We really were the only source of safety monitoring in this country,” said one fired CDC staffer who worked on the guidelines, known as the U.S. Medical Eligibility Criteria for Contraceptive Use, or MEC. “There’s no one who can actually do this work.” KFF Health News agreed not to name this worker and others who were not authorized to speak to the press and feared retaliation.
The stakes are high for people like Henderson. About six weeks after having her second baby, she said, her heart “was racing.”
“I feel like I’m underwater,” Henderson said. “I felt like I couldn’t breathe.” She eventually went to the hospital, where she was told she was “in full-blown heart failure,” she said.
Henderson was diagnosed with peripartum cardiomyopathy, an uncommon type of heart failure that can happen toward the end of pregnancy or shortly after giving birth. Risk factors for the condition include being at least 30 years old, being of African descent, high blood pressure, and obesity.
The CDC contraception guidelines say that combined hormonal contraception, which contains both estrogen and progestin to prevent pregnancy, can pose an “unacceptable health risk” for most women with peripartum cardiomyopathy, also known as PPCM. For some women with the diagnosis, a birth control injection commonly known by the brand name Depo-Provera also carries risks that outweigh its benefits, the guidelines show. Progestin-only pills or a birth control implant, inserted into an arm, are the safest.
Henderson said her cardiologist had to greenlight which contraception she could use. She uses a progestin-only birth control implant that’s more than 99% effective at preventing pregnancy.
“I didn’t know that certain things can cause blood clots,” Henderson said, “or make your heart failure worse.” Heart failure is a leading cause of maternal mortality and morbidity in the U.S., with PPCM accounting for up to 70% of heart failure cases during pregnancy.
Sweeping HHS layoffs in late March and early April gutted the CDC’s reproductive health division, upending several programs designed to protect women and infants, three fired workers said.
About two-thirds of the division’s roughly 165 employees and contractors were cut, through firings, retirements, or reassignments to other parts of the agency, one worker said.
Among those fired were CDC staffers who carried out the Pregnancy Risk Assessment Monitoring System, a survey established nearly 40 years ago to improve maternal and infant health outcomes by asking detailed questions of women who recently gave birth. The survey was used “to help inform and help reduce the contributing factors that cause maternal mortality and morbidity,” a fired worker said, by allowing government workers to examine the medical care people received before and during pregnancy, if any, and other risk factors that may lead to poor maternal and child health.
The firings also removed CDC workers who collected and analyzed data on in vitro fertilization and other fertility treatments.
“They left nothing behind,” one worker said.
U.S. contraception guidelines were first published in 2010, after the CDC adapted guidance developed by the World Health Organization. The latest version was published last August. It includes information about the safety of different types of contraception for more than 60 medical conditions. Clinicians said it is the premier source of evidence about the safety of birth control.
“It gave us so much information which was not available to clinicians at their fingertips,” said Michael Policar, a physician and professor of obstetrics, gynecology, and reproductive sciences at the University of California-San Francisco School of Medicine.
“If you’ve got a person with, let’s say, long-standing Type 2 diabetes, someone who has a connective-tissue disease like lupus, someone who’s got hypertension or maybe has been treated for a precursor to breast cancer — something like that? In those circumstances,” Policar said, “before the MEC it was really hard to know how to manage those people.”
The CDC updates the guidelines comprehensively roughly every five years. On a weekly basis, however, government workers would monitor evidence about patients’ use of contraception and the safety of various methods, something they were doing when HHS abruptly fired them this spring, two fired workers said. That work isn’t happening now, one of them said.
Sometimes the agency would issue interim changes outside the larger updates if new evidence warranted it. Now, if something new or urgent comes up, “there’s not going to be any way to update the guidelines,” one fired worker said.
In 2020, for example, the CDC revised its contraception recommendations for women at high risk of HIV infection, after new evidence showed that various methods were safer than previously thought.
HHS spokesperson Emily Hilliard declined to say why CDC personnel working on the contraception guidelines and other reproductive health issues were fired, or answer other questions raised by KFF Health News’ reporting.
Most women of reproductive age in the U.S. use contraception. CDC data from 2019, the most recent available, shows that more than 47 million women ages 15 to 49 relied on birth control. About 1 in 10 used long-acting methods such as intrauterine devices and implants; 1 in 7 used oral contraception.
The latest guidelines included updated safety recommendations for women who have sickle cell disease, lupus, or PPCM, and those who are breastfeeding, among others. Clinicians are now being told that combined hormonal contraception poses an unacceptable health risk for women with sickle cell disease, because it might increase the risk of blood clots.
“It can really come down to life or death,” said Teonna Woolford, CEO of the Sickle Cell Reproductive Health Education Directive, a nonprofit that advocates for improved reproductive health care for people with the disease.
“We really saw the CDC guidelines as a win, as a victory — they’re actually going to pay attention,” she said.
The 2024 guidelines also for the first time included birth control recommendations for women with chronic kidney disease. Research has shown that such women are at higher risk of serious pregnancy complications, including preeclampsia and preterm delivery. Their medical condition also increases their risk of blood clots, which is why it’s important for them not to use combined hormonal contraception, fired CDC workers and clinicians said.
The CDC information “is the final say in safety,” said Patty Cason, a family nurse practitioner and president of Envision Sexual and Reproductive Health. Having only static information about the safety of various types of birth control is “very scary,” she said, because new evidence could come out and entirely new methods of contraception are being developed.
Henderson said it took her heart two years to recover. She created the nonprofit organization Let’s Talk PPCM to educate women about the type of heart failure she was diagnosed with, including what forms of birth control are safe.
“We don’t want blood clots, worsening heart failures,” Henderson said. “They already feel like they can’t trust their doctors, and we don’t need extra.”
We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.