In the village of Noatak in Alaska’s Northwest Arctic region, Pregnancy Risk Assessment Monitoring System (PRAMS) data showed the community had lower breastfeeding initiation and six-week breastfeeding rates than the statewide average. This data supported funding to offer culturally-adapted peer breastfeeding services in the region. (Courtesy of Laura Norton-Cruz)

In the remote villages of Alaska where social worker Laura Norton-Cruz works to improve maternal and infant health, there are no hospitals.

Pregnant patients, almost all of whom are Alaska Native, often fly on small 10-seat planes to the region’s larger hub community of Kotzebue. While some give birth there, many more then take a jet out of the Northwest Arctic region to Anchorage, the state’s largest city. By the time they fly back to Kotzebue for their six-week checkup, a high percentage have stopped breastfeeding because of a lack of ongoing supports. 

Norton-Cruz knows that because of data collected by Alaska’s Pregnancy Risk Assessment Monitoring System (PRAMS)— a grantee of the U.S. Centers for Disease Control and Prevention’s PRAMS program, started in 1987 in an effort to reduce infant morbidity and mortality.

But earlier this month, the Trump administration cut the federal program, its 17-member team and more workers in the Division of Reproductive Health as part of sweeping layoffs within the U.S. Department of Health and Human Services.

Rita Hamad, associate professor at Harvard School of Public Health, said PRAMS helps researchers understand what kinds of state policies are improving or harming child health.

“I can’t overemphasize what an important dataset this is and how unique it is to really show national trends and help us try to understand how to optimize the health of moms and young kids,” Hamad said.

PRAMS does not ask abortion-related questions, but some anti-abortion groups still try to make a connection.

“The cuts seem appropriate given all the bias in choosing topics and analyzing data, but if Pregnancy Risk Assessment Monitoring System wishes to justify their reporting, point to the study that has most helped women and their children, born and preborn, survive and thrive,’’ Kristi Hamrick, vice president of media and policy at Students for Life of America, told States Newsroom in an email.

Over the past two years, Norton-Cruz used Alaska’s PRAMS data to identify low breastfeeding rates in the region, connect with people in the villages and interview them about what would help them continue to breastfeed. What they wanted, she said, was a peer in the community who understood the culture — so that’s what she’s been working to set up through federal programs and funding that is now uncertain.

Norton-Cruz also uses responses from PRAMS surveys to identify risk factors and interventions that can help prevent domestic and sexual violence and childhood trauma, particularly in rural communities, where the rates of domestic violence and maternal death are high.

“PRAMS data not being available, I believe, is going to kill mothers and babies,” she said. “And it’s going to result in worse health for infants.”

New York City grant is renewed, but data collection is paused

Individual states collect and report their own data, and the CDC team was responsible for aggregating it into one national picture. Some localities, such as New York City, maintain a full dashboard of data that can be explored by year and survey question. The most recent fully published data is from 2022 and shows responses by region, marital status, Medicaid status and more.

For instance, 2022 data showed women on Medicaid experienced depressive symptoms at a higher rate after giving birth than those not on Medicaid. It also showed that a much higher percentage of women not on Medicaid reported putting their babies on their backs to sleep, the recommended method for safe sleep — 63% of women on Medicaid reported following that method, versus 85% not on Medicaid.

Hamad said PRAMS is the only national survey dataset dedicated to pregnancy and the postpartum period. Her team has studied the outcomes of the Women, Infants, and Children food assistance program, and how state paid family leave policies have affected rates of postpartum depression.

“This survey has been going on for decades and recruits people from almost all states,’’ she said. “There’s really no other dataset that we can use to look at the effects of state and federal policies on infant health and postpartum women.”

Under Secretary Robert F. Kennedy Jr., Health and Human Services laid off about 10,000 employees as part of a restructuring effort in early April. The overhaul is part of the “Make America Healthy Again” initiative, and the agency said it focused cuts on redundant or unnecessary administrative positions. It rescinded some of the firings in the weeks since, with Kennedy telling reporters that some were “mistakes.” It’s unclear if any of those hired back were PRAMS employees.

The cuts, Hamad said, also run counter to the administration’s stated goals of wanting to protect women, children and families.

“The government needs this data to accomplish what it says it wants to do, and it’s not going to be able to do that now,” she said.

The funding for local PRAMS programs seems to be unaffected for now. Spokespersons for health department teams in Alaska, New Mexico, Oklahoma and Kansas told States Newsroom they have not had any layoffs or changes to their grants, but the funding for this fiscal year ends on April 30. Forty-six states, along with D.C., New York City and two U.S. territories, participate in the program. According to the CDC, those jurisdictions represent 81% of all live births in the United States.

New York State Department of Health spokesperson Danielle De Souza told States Newsroom in an email their program has received another year of funding that begins May 1 and supports one full-time and two part-time staffers. But without the assistance of the national CDC team to compile, clean, and prepare the data, maintain the data collection platform and establish standards, De Souza said their state-level operations are on pause.

“We remain hopeful that the data collection platform will be fully reactivated, and that CDC coordination of PRAMS will resume,” De Souza said. “The department is assessing the challenges and feasibility of continuing operations if that does not occur.”

Hamad said some states might be willing to allocate state dollars to the programs to keep them running, but the states that have some of the worst maternal and infant health outcomes — such as Arkansas, Mississippi and Alabama — are the least likely to have the political will to do that. And it would still make the data less robust and valuable than it was before.

“If one state is asking about how often you breastfed in the last week, and another one is asking about the last month, then we won’t have comparable data across states,” she said.

Project 2025, anti-abortion groups have criticized CDC data collection

Jacqueline Wolf, professor emeritus of social medicine at Ohio University, has studied the history of breastfeeding and childbirth practices and said the rates of maternal and infant death were high in the late 19th and early 20th centuries. For every breastfed baby, 15 raw milk-fed babies died. Wolf said 13% of babies didn’t live to their 1st birthday, and more than half were dying from diarrhea.

To help determine what was causing those deaths and prevent it, public health specialists created detailed forms and collected information from families about a mother’s age, the parents’ occupations, race, income level, household conditions, and how the babies were fed.

Researchers at that time were able to determine that babies who weren’t breastfed were getting sick from unpasteurized milk and tainted water supply, and more than half were dying from diarrhea. Through public health reforms, like requiring cow’s milk to be pasteurized, sold in individual sterile bottles and kept cold during shipping, infant death rates dropped, Wolf said.

Health officials also increased education campaigns around the issue. Today, PRAMS uses survey data the same way.

“These were detectives,” Wolf said. “That’s what public health really is, detective work, which is why this data is so important.”

Project 2025, the blueprint document of directives for the next Republican presidential administration crafted by conservative group Heritage Foundation in 2024 and closely followed by President Donald Trump and his cabinet, details plans for the CDC’s data collection efforts. Page 453 of the 900-page document, written by Heritage Foundation executive Roger Severino says it’s proper for the CDC to collect and publish data related to disease and injury, but the agency should not make public health recommendations and policies based on that data because it is “an inescapably political function.”

The agency should be separated into two, Severino wrote, with one agency responsible for public health with a “severely confined ability to make policy recommendations.”

“The CDC can and should make assessments as to the health costs and benefits of health interventions, but it has limited to no capacity to measure the social costs or benefits they may entail,” the document says.

On page 455, Severino says the CDC should also eliminate programs and projects that “do not respect human life” and undermine family formation. It does not name PRAMS as a program that does this, but says the agency should ensure it is not promoting abortion as health care.

Hamrick, of Students for Life of America, told States Newsroom in an email that because there is no national abortion reporting act that tracks outcomes for women who end a pregnancy, assumptions in current reports “taint the outcomes.” Hamrick said the CDC has done a poor job of getting a complete picture of pregnancy risks, including the risk of preterm birth after having an abortion.

“Taxpayers don’t have money to waste on purely political messaging,” Hamrick said.

Without data, researcher worries policy recommendations will be easier to dismiss

If researchers like Laura Norton-Cruz don’t have PRAMS data moving forward, she said they will be operating in the dark in many ways, using anecdotal and clinical data that is not as reliable and accurate as the anonymous surveying. That can make it more difficult to push for funding and program changes from lawmakers as well.

“Moms need safe housing and domestic violence resources, moms need health care and breastfeeding support, and if we can’t show that, then they can justify not providing those things, knowing that those most affected by not having those things will be groups who are already marginalized,” Norton-Cruz said.

While HHS did not cite the administration’s ongoing efforts to remove any content from the federal government that acknowledges disparities in race or gender as its motivation for cutting the PRAMS team, researchers who spoke with States Newsroom think that could be the underlying reason. 

Wolf said race matters in data collection just as much as household economics or class, and it is just as relevant today as it was when PRAMS was established, as maternal death rates for Black women and other women of color are disproportionately high in a number of states. Those states are also often the poorest and have higher infant mortality rates.

Wolf recalled that during Trump’s first term in 2020, the first year of COVID, the administration ordered the CDC to stop publishing public data about the pandemic. She sees a parallel to today.

“I fear that is exactly what’s going on with PRAMS,” she said. “To pretend like you don’t have the data, so the problem doesn’t exist, is just about the worst response you can think of, because more and more mothers and babies are going to get hurt.”

States Newsroom state outlet reporters Anna Kaminski, Danielle Prokop and Emma Murphy contributed to this report.

Federal health officials temporarily froze Title X family-planning funds for some Planned Parenthood clinics, which provide reproductive health services ranging from birth control to STI testing, across the nation this week. (Photo by Michael M. Santiago/Getty Images) 

More than 1 million people seeking care such as contraception or testing for sexually transmitted diseases and cancer could be affected by the Trump administration withholding more than $27 million in Title X funding to Planned Parenthood clinics nationwide, according to estimates from the Guttmacher Institute.

Planned Parenthood state affiliates said they were notified that the funding they receive under the Title X family-planning program would be temporarily frozen, Politico first reported Monday night.

The U.S. Department of Health and Human Services, which is responsible for managing and distributing Title X funds, told States Newsroom via email that it is reviewing all Title X grant recipients to make sure they comply with federal law and President Donald Trump’s executive orders. The department is concerned about “the compliance of several awardees” that together receive $27.5 million, according to an HHS spokesperson, who added, “HHS expects all recipients of federal funding to comply with federal law.”

Letters received by some affiliates detailed possible violations of federal civil rights laws and executive orders recently issued by Trump, including the administration’s efforts to prohibit diversity, equity and inclusion initiatives and provide care regardless of a person’s immigration status.

“It is difficult to overstate how ridiculous it is that the administration is premising this funding freeze on a ‘DEI review,’” said Amy Friedrich-Karnik, Guttmacher’s director of federal policy, in a statement. “The entire point of the Title X program is to address disparities in access to contraception and other sexual and reproductive health care, including serving people with low incomes and those from other historically underserved communities. We need to see this for what it is — a direct attack on health equity.”

The Title X program was established in 1970 to provide reproductive health care for anyone who needs it. Federal law prohibits use of federal funds for abortion. Planned Parenthood clinics offer a broad range of non-abortion services.

No final decisions have been made regarding Title X funding for Planned Parenthood.

Affiliates in Alaska, California, Idaho, Hawaii, Maine, Mississippi, Missouri, Montana, Oklahoma, Tennessee, Utah and others reported receiving the notification, representing thousands of people served at each clinic every year and millions in funds. Guttmacher’s data shows that 83% of people who visited Title X-funded clinics in 2023 had family incomes at or below 250% of the federal poverty level.

In Missouri and Oklahoma alone, Title X funding totals nearly $8.5 million, according to a news release from Missouri Family Health Council.

“Withholding these critical funds, even temporarily, threatens the essential sexual and reproductive health care communities depend on,” said Michelle Trupiano, executive director of the council.

Kat Mavengere, spokesperson for Maine Family Planning, said the agency also received notice of a freeze affecting $1.92 million in funds. Planned Parenthood of Northern New England is a sub-grantee of Maine Family Planning. Mavengere told States Newsroom the notice from HHS identified two items on their website “related to documents that detail our commitment to health equity” as reasons for the funding review.

Nicole Clegg, CEO of the Northern New England Planned Parenthood affiliate, said it receives about $900,000 in funds between Maine and New Hampshire from the family-planning organization.

If people can’t seek basic reproductive health services at no cost, including wellness exams, Clegg said they go without.

“We’ve seen that. When Planned Parenthoods leave communities, the data just speaks to increases in STI transmission, increases in unintended pregnancy … there are very real consequences to a community when we’re no longer there,” Clegg said. 

A recent poll conducted by Perry Undem showed 77% of respondents were opposed to the idea of the Trump administration cutting funding for services like birth control for people with low incomes.

During his first term, Trump also cut Title X funds to clinics that provided abortions or referred people for abortions in 2019, causing one-third of participating providers to leave the program, according to KFF. The Biden administration reversed the policy two years later.

The U.S. Supreme Court is scheduled to hear arguments Wednesday in a case that will determine whether South Carolina government officials can remove Planned Parenthood clinics from the state’s Medicaid program because the organization provides abortions. If the court rules in South Carolina’s favor, other states that have tried to drain the organization’s funding for decades may follow suit.

Anti-abortion organizations celebrated the news of the Title X freeze for some Planned Parenthood clinics on Tuesday, including Susan B. Anthony Pro-Life America, which has been pushing efforts to “defund” Planned Parenthood in recent weeks in its fundraising emails. SBA was also involved in the drafting of the Heritage Foundation’s blueprint for the next conservative presidency, Project 2025, and identified this action as a priority.

“This is a big step in the right direction,” President Marjorie Dannenfelser told States Newsroom in a statement. “We thank President Trump for this bold action and urge further steps to eliminate all taxpayer funding for Planned Parenthood.”

Multiple Republican-led states have sued to rescind a federal rule keeping the records of those who sought legal reproductive care private, while a federal judge in Texas is questioning the constitutionality of the federal HIPAA law in its entirety. (Photo by Wichayada Suwanachun/Getty Images)

The decades-old federal law protecting the privacy of individual health information is threatened by multiple lawsuits that seek to throw out a rule restricting disclosure of information in criminal investigations, including for those seeking legal abortion and other reproductive health care.

In one of the cases, the Texas federal judge who has been at the center of several anti-abortion court battles appears to question the constitutionality and legality of the health privacy act in its entirety.

The Health Insurance Portability and Accountability Act — or HIPAA — established in 1996 to protect the privacy and security of patient health information, includes some exceptions under limited conditions, such as law enforcement investigations. But after the U.S. Supreme Court ended federal abortion rights in 2022 and more than a dozen states passed abortion bans, advocates worried that such records could be used by state officials and law enforcement to investigate and prosecute patients seeking an abortion and those who help them.

Health officials under former President Joe Biden’s administration enacted a HIPAA rule to keep health information private when the patient was in a state with legal access and the care was obtained legally. In order to release information related to this type of care, the entity subject to HIPAA rules must sign a document stating it is not released for one of the prohibited purposes.

“These cases may have been prompted by this newer rule, but they threaten more broadly the entire HIPAA system on which we all rely when accessing medical care,” said Carrie Flaxman, senior legal adviser for Democracy Forward, a nonprofit legal organization.

Two lawsuits seek to rescind that most recent rule, while another brought by Texas Attorney General Ken Paxton goes a step further, asking the court to remove the general rules established in 2000 about how much health information can be disclosed to law enforcement.

“The threats to the 2000 privacy rule would be a seismic shift that could erode patients’ trust entirely in their providers and dissuade them from wanting to seek out health care and be transparent about their symptoms,” said Ashley Emery, a senior policy analyst for the nonprofit Partnership for Women and Families. “A law enforcement officer could pressure a psychiatrist to share patient notes from therapy sessions without a subpoena, without a warrant, if the 2000 privacy rule is invalidated.”

The state of Missouri sued to rescind the Biden rule in January, and the state of Tennessee filed a similar action the same day that 14 other Republican attorneys general joined as plaintiffs: Alabama, Arkansas, Georgia, Idaho, Indiana, Iowa, Louisiana, Montana, Nebraska, North Dakota, Ohio, South Carolina, South Dakota and West Virginia. All but three of those states either heavily restrict or outright ban abortion, and if the lawsuits are successful, records kept by doctors and pharmacists in other states could be subpoenaed.

All of the lawsuits are filed against the U.S. Department of Health and Human Services, which is now under Republican President Donald Trump and HHS Secretary Robert F. Kennedy Jr. The Trump administration has so far followed the direction of the conservative Heritage Foundation’s Project 2025, which calls for the most recent HIPAA rule to be rescinded.

Amarillo judge ordered briefing on HIPAA’s constitutionality and legality

Three cases are still in motion, including one with a physician as the plaintiff. Dr. Carmen Purl, the sole owner of Dr. Purl’s Fast Care Walk In Clinic in Dumas, Texas, sued HHS because she said the rule creates a conflict with the laws requiring her to report child abuse.

“I consider both a pregnant woman and her unborn child to be human persons, and both are entitled to medical care and deserve the protection of the law,” Purl said in court documents. “I believe … that elective abortions harm patients’ health and public health.”

The location of Purl’s clinic puts her in the judicial district that has only one federal judge — U.S. District Judge Matthew Kacsmaryk, a Trump appointee. Most federal cases are assigned randomly to a group of judges in a district, but since Kacsmaryk is the only one, many advocates and attorneys have accused law firms like Alliance Defending Freedom, who is representing Purl in the case, of “judge shopping,” or finding a plaintiff in a certain area for the purpose of putting it in front of an ideologically friendly judge.

On Dec. 22, Kacsmaryk granted an injunction blocking enforcement of the rule against Purl while the case proceeds, and he is still considering whether to permanently block the law.

As part of the decision, Kacsmaryk also ordered the parties to submit briefs explaining how recent U.S. Supreme Court rulings that delegate more authority to Congress over administrative agencies “affect the constitutionality or legality of HIPAA and HHS’s authority to issue the 2024 rule.”

Kacsmaryk presided over a lawsuit in 2023 brought by a group of anti-abortion doctors seeking to revoke the U.S. Food and Drug Administration’s approval of mifepristone, one of two drugs commonly used to terminate pregnancies in the first trimester and to treat miscarriages. Kacsmaryk ruled in favor of removing its approval, but the U.S. Supreme Court unanimously overruled him in 2024.

Purl added that she thinks gender-affirming care is harmful to children, never medically necessary and a matter of concern for public health, though she has never treated a child with gender dysphoria. In the process of providing routine medical care, she said she could learn that a child was being subjected to gender-affirming treatments or procedures that could constitute child abuse, and she would be obligated to report it.

Purl’s clinic has fewer than 20 employees, and she has been licensed to practice family medicine in Texas since 1986. In that time, she said she has treated many patients who have been victims of abuse and neglect, and estimates she has personally treated more than 100 pediatric patients who were victims of sexual abuse.

“I have treated hundreds of girls under the age of consent who were either pregnant or reported sexual activity. During my career, I have delivered babies from mothers as young as 12 years old,” Purl wrote.

Purl said she has responded to Child Protective Services investigations between 10 and 12 times, and she fears that providing full, unredacted patient records in response to an entity such as CPS would violate the 2024 rule and subject her and the clinic to civil and criminal penalties, which often means hefty fines.

In a response filed by HHS in December, before Trump’s second term began, the department said the rule does nothing to prevent Purl from reporting suspected child abuse, and denied the other harms Purl said she would incur.

“Given the nature of her medical practice, Dr. Purl is highly unlikely to ever encounter a conflict between her obligations under state law and under the Rule,” the department said in court documents.

AGs from ban states are testing newly enacted shield laws

The Texas case led by Paxton has been on hold since February, after the U.S. Department of Justice asked the court to delay scheduling until the new administration could determine how to proceed. U.S. District Judge James Wesley Hendrix, a Trump appointee, ordered the parties to file a status report by May 1.

Attorneys general in states with abortions bans have already attempted to prosecute providers in other states for prescribing abortion pills via telehealth and prosecute women who obtained an abortion in another state without the consent of a male partner. Louisiana Gov. Jeff Landry signed an extradition warrant for a doctor in New York for prescribing and mailing abortion pills to residents of the state.

New York is one of 17 Democratic-led states that has a shield law to protect providers and patients from out-of-state legal actions for reproductive care and gender-affirming care, and the state government has so far refused to comply with Louisiana’s law enforcement efforts.

The coalition of states that joined Tennessee’s lawsuit claim the privacy rule harms their ability to investigate cases of waste, fraud and abuse, and “sharply limits state investigative authority.”

Chad Kubis, spokesperson for Tennessee Attorney General Jonathan Skrmetti, told States Newsroom via email that the office could not comment for this story because of the ongoing litigation.

“The final rule will hamper states’ ability to gather information critical to policing serious misconduct like Medicaid billing fraud, child and elder abuse, and insurance-related malfeasance,” the complaint says.

Attorneys at Democracy Forward have asked the courts to allow the clients they are representing to intervene as defendants in all four cases, arguing that the new administration is likely to either not defend the cases at all or defend them inadequately. They are representing the cities of Columbus, Ohio, and Madison, Wisconsin, as well as Doctors for America, an activist organization of physicians and medical students. None of the judges have ruled on their motions yet.

Partnership for Women and Families filed an amicus brief with 23 other advocacy organizations to support upholding the rule.

“We can’t count on the Trump administration to defend this regulation, given its longstanding record of hostility toward reproductive health and rights,” Emery said.

It’s possible the new leadership at HHS will rescind the 2024 rule, Emery said, but the lawsuits alone are concerning enough because of the threat posed to privacy protections. That’s part of the goal, said Emery and Flaxman — to present the threat and sow fear and intimidation in patients and providers. And the method of launching multiple lawsuits in various jurisdictions fits a pattern that has been observed in the fight for abortion rights, Emery said.

“Anti-abortion extremists’ legal campaign against HIPAA’s reproductive health privacy protections is designed to test out different legal venues and arguments to obtain the most favorable outcome possible,” she said.

Doctor who has been investigated before says intimidation tactics have an effect

Indiana OB-GYN Dr. Caitlin Bernard knows what it’s like to be the target of an investigation, and said she’s still in court fighting new attempts to instill fear in doctors and patients.

Bernard was an abortion provider in Indiana before the state enacted its ban in August 2023. She reported in 2022 that she had provided a medication abortion to a 10-year-old rape victim who traveled to Indiana from Ohio when the state briefly had a ban in place. She was accused of violating patient privacy laws and investigated by Indiana Attorney General Todd Rokita, and the state licensing board fined her $3,000 and reprimanded her for the incident after Rokita asked the board to revoke her license to practice medicine. She was found to have violated patient privacy, but the board determined the fine was sufficient and she kept her license.

“Now my case is held up as an example of what can happen to you if you speak out about abortion bans,” Bernard said. “I’ve spoken to many physicians across the country who are intimidated by that. They say, ‘Look at Dr. Bernard and what happened to her.’”

Now, Bernard is part of a lawsuit against the state to categorize terminated pregnancy records as medical records in state law that cannot be released to the public. Indiana has historically treated abortion reports as public record with certain details redacted, but Bernard said with the ban in place and so few people qualifying for its limited exceptions, that policy should change. The records include demographic information like age, ethnicity and education level, as well as information such as diagnoses and the date, location and physician who provided care.

“It also includes the county, so you could imagine in these very small counties, somebody could absolutely figure out who that person is,” Bernard said.

Ashley Emery, senior policy analyst at Partnership for Women and Families, said the lawsuits take aim at a deeply needed line of defense against abortion criminalization, and said it will disproportionately affect immigrants, people of color and low-income populations. Trust is already low between marginalized people and health care providers, Emery said, and this would further erode that trust.

“These challenges to HIPAA are designed to take protections away from patients and try to allow anti-abortion politicians to have more control, and I think that power deficit is really important to note, and it should be very chilling,” she said.

Editor’s note: This story has been corrected to say the Indiana state licensing board found Dr. Caitlin Bernard violated patient privacy laws but kept her license.

Idaho’s ban contains an exception to save the pregnant patient’s life, but not to prevent detrimental health outcomes, including the loss of future fertility, which is a risk with severe infection or bleeding. Without further clarity written into the law,…