Latest news with #U.S.MedicalEligibilityCriteriaforContraceptiveUse
Miami Herald
12 hours ago
- Health
- Miami Herald
HHS eliminates CDC staff who made sure birth control is safe for women at risk
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." ____ Copyright (C) 2025, Tribune Content Agency, LLC. Portions copyrighted by the respective providers.
Yahoo
11-06-2025
- Health
- Yahoo
How CDC cuts affect women with chronic diseases like sickle cell
WESTLAND, Mich. — For D'Asia Jackson, every day is a guessing game over whether excruciating pain will upend her life. The 28-year-old medical assistant was born with sickle cell disease, an inherited condition that causes red blood cells to be shaped like a crescent moon. The anomaly can cause blood clots, organ damage and excruciating pain, which can worsen during the menstrual cycle. 'Pain-wise, I always describe it as like being hit by a Mack truck,' Jackson said. 'When I know my period is coming, I know pain is probably right behind it.' Over the last 10 years, Jackson has worked with her doctors to try a variety of contraception options to get her symptoms under control, from the Depo-Provera shot, a hormone injection given every three months, to an IUD to different forms of birth control pills. According to Jackson, none of them helped. Some made her periods even worse. 'I might have a good four or five good days of not bleeding in a month,' she said. 'Over the years, it's like the period actually started getting heavier, and that's when it started affecting my sickle cell.' At times, she's ended up in the hospital needing iron infusions due to loss of blood. Doctors don't know how to manage her symptoms. Sickle cell has no cure and treatment options are variable. 'The lack of education on sickle cell is very frustrating,' she said. 'I go into hospital stays having to educate doctors and nurses.' Now, women like Jackson are worried that lack of knowledge, particularly about how contraception affects their conditions, could get worse. In April, a small team that compiled information into what some consider the country's 'contraception bible,' a set of guidelines used by physicians to assess which types of birth control are safe for their patients, was fired from the Centers for Disease Control and Prevention as part of mass layoffs from the agency. The eight-person team was responsible for evaluating research and recommending birth control methods for patients with various conditions, from sickle cell disease, kidney disease and lupus to those at risk for HIV. The guidelines, called the U.S. Medical Eligibility Criteria for Contraceptive Use, provided the latest research for doctors, including an app that recommended which contraceptive methods were safe. The app has been downloaded more than 440,000 times, according to the CDC. Now, the work of that team has been halted as part of the reduction of the Women's Health and Fertility Branch of the Division of Reproductive Health. 'These are the only federal guidelines that focus on the safety of contraception for women with certain medical conditions,' said Lee Warner, the former chief of the Women's Health and Fertility Branch. 'This work exists nowhere else, and these individuals specialize in this area. Without their presence, the work stops.' Warner retired from the agency in April just after learning his team was being eliminated. 'While most women are able to use most methods, we looked at 60 conditions and over 1,800 evidence-based recommendations across an array of contraceptive methods,' he said. 'For some women, it is very dangerous for them to become pregnant at a certain point. So having contraception available to them that they can choose can help protect them.' At least 90% of people in the United States with sickle cell disease are Black. The maternal mortality rate for Black sickle cell patients has been found to be 26 times higher than for non-Black people. 'The CDC's decision to cut the team responsible for contraceptive guidelines is especially troubling for the sickle cell community, where pregnancy can carry severe health risks,' said Teonna Woolford, who founded the nonprofit Sickle Cell Reproductive Health Education Directive to advocate for patients and expand knowledge about the often-misunderstood disease. 'Eliminating this resource will disproportionately impact a community already facing significant barriers to care, further deepening health disparities.' In response to a request for comment, an official for the Department of Health and Human Services did not explain why the team was cut. In May, Health Secretary Robert F. Kennedy Jr. defended the cuts in a hearing before the Senate Health, Education, Labor and Pensions Committee. 'Right now we have 42 divisions that do maternal health,' Kennedy testified. 'They're not cuts. They're consolidations. It's ridiculous to have 42 divisions that are all supposed to be doing the same thing.' Warner disagreed with Kennedy's testimony. 'Especially with this branch,' he said, 'the expertise is not redundant of that elsewhere in the federal government.' 'Once this expertise is gone, it is permanently gone from the agency. It is going to be very hard to resume and re-create,' he said. 'The HHS restructuring consolidates maternal and child health programs into the new Administration for a Healthy America (AHA) to improve efficiency and better address public health needs,' an HHS official said in a statement to NBC News. 'The reorganization aims to streamline operations, maximize resources, and support key priorities like maternal mental health and data collection. We remain committed to improving health outcomes for American families.' Representatives for HHS did not specify if work on the contraception guidelines would continue. The Trump administration did not respond to questions about why the team was cut or if its work would continue. The CDC's most recent update to the contraception guidelines was published in August. The updates included new recommendations for people with sickle cell disease, finding that combined hormonal contraception presents an 'unacceptable health risk' due to patients' risk of life-threatening blood clots. In previous versions of the guidelines, the CDC found the advantages of combined hormonal birth control, which contains estrogen and progestin, outweighed potential risks such as blood clots or stroke. The newest guidelines also increased the risk category for the Depo-Provera shot, while ranking methods like progestin-only pills and IUDs as generally safe. Jackson was unaware of the updated guidance until her interview with NBC News. She said she is using an IUD as well as combined hormonal contraception in the form of a pill to try to manage her bleeding. 'I didn't know that,' she said. 'I kind of just hope that my doctor knows a lot and kind of just steers me in the right direction.' Warner said the CDC team should be publicizing the updated guidance now to make physicians aware of the changes and adjust how they treat patients. 'We actually planned to do a road show of the guidelines in the late fall and throughout the spring in which we would disseminate the guidelines and go speak to provider groups,' he said. 'It's not happening.' The severe pain associated with her periods has driven Jackson to seek a hysterectomy for relief. 'I have been asking for a hysterectomy for years. I've seen five different OBs, and no one will do it,' she said. While the current guidelines are still accessible, the August update could be the last, leaving Jackson with little hope that she'll find a method of birth control that works for her. 'I am terrified of how health care is going to go with all of these cuts being made,' she said. This article was originally published on
NBC News
11-06-2025
- Health
- NBC News
How CDC cuts affect women with chronic diseases like sickle cell
WESTLAND, Mich. — For D'Asia Jackson, every day is a guessing game over whether excruciating pain will upend her life. The 28-year-old medical assistant was born with sickle cell disease, an inherited condition that causes red blood cells to be shaped like a crescent moon. The anomaly can cause blood clots, organ damage and excruciating pain, which can worsen during the menstrual cycle. 'Pain-wise, I always describe it as like being hit by a Mack truck,' Jackson said. 'When I know my period is coming, I know pain is probably right behind it.' Over the last 10 years, Jackson has worked with her doctors to try a variety of contraception options to get her symptoms under control, from the Depo-Provera shot, a hormone injection given every three months, to an IUD to different forms of birth control pills. According to Jackson, none of them helped. Some made her periods even worse. 'I might have a good four or five good days of not bleeding in a month,' she said. 'Over the years, it's like the period actually started getting heavier, and that's when it started affecting my sickle cell.' At times, she's ended up in the hospital needing iron infusions due to loss of blood. Doctors don't know how to manage her symptoms. Sickle cell has no cure and treatment options are variable. 'The lack of education on sickle cell is very frustrating,' she said. 'I go into hospital stays having to educate doctors and nurses.' Now, women like Jackson are worried that lack of knowledge, particularly about how contraception affects their conditions, could get worse. In April, a small team that compiled information into what some consider the country's 'contraception bible,' a set of guidelines used by physicians to assess which types of birth control are safe for their patients, was fired from the Centers for Disease Control and Prevention as part of mass layoffs from the agency. The eight-person team was responsible for evaluating research and recommending birth control methods for patients with various conditions, from sickle cell disease, kidney disease and lupus to those at risk for HIV. The guidelines, called the U.S. Medical Eligibility Criteria for Contraceptive Use, provided the latest research for doctors, including an app that recommended which contraceptive methods were safe. The app has been downloaded more than 440,000 times, according to the CDC. Now, the work of that team has been halted as part of the reduction of the Women's Health and Fertility Branch of the Division of Reproductive Health. 'These are the only federal guidelines that focus on the safety of contraception for women with certain medical conditions,' said Lee Warner, the former chief of the Women's Health and Fertility Branch. 'This work exists nowhere else, and these individuals specialize in this area. Without their presence, the work stops.' Warner retired from the agency in April just after learning his team was being eliminated. 'While most women are able to use most methods, we looked at 60 conditions and over 1,800 evidence-based recommendations across an array of contraceptive methods,' he said. 'For some women, it is very dangerous for them to become pregnant at a certain point. So having contraception available to them that they can choose can help protect them.' At least 90% of people in the United States with sickle cell disease are Black. The maternal mortality rate for Black sickle cell patients has been found to be 26 times higher than for non-Black people. 'The CDC's decision to cut the team responsible for contraceptive guidelines is especially troubling for the sickle cell community, where pregnancy can carry severe health risks,' said Teonna Woolford, who founded the nonprofit Sickle Cell Reproductive Health Education Directive to advocate for patients and expand knowledge about the often-misunderstood disease. 'Eliminating this resource will disproportionately impact a community already facing significant barriers to care, further deepening health disparities.' In response to a request for comment, an official for the Department of Health and Human Services did not explain why the team was cut. In May, Health Secretary Robert F. Kennedy Jr. defended the cuts in a hearing before the Senate Health, Education, Labor and Pensions Committee. ' Right now we have 42 divisions that do maternal health,' Kennedy testified. 'They're not cuts. They're consolidations. It's ridiculous to have 42 divisions that are all supposed to be doing the same thing.' Warner disagreed with Kennedy's testimony. 'Especially with this branch,' he said, 'the expertise is not redundant of that elsewhere in the federal government.' 'Once this expertise is gone, it is permanently gone from the agency. It is going to be very hard to resume and re-create,' he said. 'The HHS restructuring consolidates maternal and child health programs into the new Administration for a Healthy America (AHA) to improve efficiency and better address public health needs,' an HHS official said in a statement to NBC News. 'The reorganization aims to streamline operations, maximize resources, and support key priorities like maternal mental health and data collection. We remain committed to improving health outcomes for American families.' Representatives for HHS did not specify if work on the contraception guidelines would continue. The Trump administration did not respond to questions about why the team was cut or if its work would continue. The CDC's most recent update to the contraception guidelines was published in August. The updates included new recommendations for people with sickle cell disease, finding that combined hormonal contraception presents an 'unacceptable health risk' due to patients' risk of life-threatening blood clots. In previous versions of the guidelines, the CDC found the advantages of combined hormonal birth control, which contains estrogen and progestin, outweighed potential risks such as blood clots or stroke. The newest guidelines also increased the risk category for the Depo-Provera shot, while ranking methods like progestin-only pills and IUDs as generally safe. Jackson was unaware of the updated guidance until her interview with NBC News. She said she is using an IUD as well as combined hormonal contraception in the form of a pill to try to manage her bleeding. 'I didn't know that,' she said. 'I kind of just hope that my doctor knows a lot and kind of just steers me in the right direction.' Warner said the CDC team should be publicizing the updated guidance now to make physicians aware of the changes and adjust how they treat patients. 'We actually planned to do a road show of the guidelines in the late fall and throughout the spring in which we would disseminate the guidelines and go speak to provider groups,' he said. 'It's not happening.' The severe pain associated with her periods has driven Jackson to seek a hysterectomy for relief. 'I have been asking for a hysterectomy for years. I've seen five different OBs, and no one will do it,' she said. While the current guidelines are still accessible, the August update could be the last, leaving Jackson with little hope that she'll find a method of birth control that works for her.
