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Doctors tell ‘heartbreaking’ stories in new study of post-Roe medical care

University of California San Francisco (UCSF) researchers are trying to piece together how the ending of Roe v. Wade has thus far transformed pregnancy-related medical care in America, and the yet-to-be-released preliminary data is alarming, the lead principal investigator told States Newsroom in an exclusive interview.

The team has already received dozens of stories about health care workers directing patients to continue high-risk or doomed pregnancies, which they may not have done before their states criminalized abortion.

“The stories are truly heartbreaking,” said Dr. Daniel Grossman, who heads Advancing New Standards in Reproductive Health (ANSIRH) at UCSF, who launched the Care Post Roe study last October, which draws from a survey in which participants they share anecdotes anonymously or without identifying details.

Through this limited qualitative study, the researchers are learning how clinical care has deviated from the “usual standard” since last June, when the US Supreme Court overturned Roe. Grossman said his researchers have so far received about 50 “valid full commissions” on patients living in about half of the dozen or so states that currently or previously have banned abortions (totally or partially), including Arizona, Georgia and Indiana.

A theme of fear is emerging from the data, Grossman said. Not only are providers afraid of breaking the new laws, but some patients are terrified of being pregnant in states with abortion bans and travel long distances when problems arise.

“[T]They were too scared to even go seek treatment in that state because they were worried about what might happen to them,” Grossman said. “Then, they traveled long distances to another state to be evaluated. they weren’t even pregnant. Sometimes it turned out that they had had a miscarriage that had actually already completed and didn’t need any treatment. And in one case, the patient had an ectopic pregnancy, where she should have been able to get that treatment where he lived.

“Patients were being sent home”

Providers have reported cases of premature rupture of membranes to researchers in the second trimester, Grossman said, noting that the standard of care in these cases is to offer disruption, given the high risk of infection and low probability of delivery. I live.

“And instead, in these cases, patients were sent home,” he said. “And then they come back with the infection, and a lot of them developed a very serious infection that required very complicated management in the intensive care unit.”

Additionally, UCSF researchers learned of several cases of patients whose fetuses had no chance of survival but had to leave their state to have an abortion, an increasingly common story.

Grossman said providers described having to bend over backwards to treat patients with ectopic pregnancies, a dangerous condition that occurs in about 1 to 2 percent of pregnancies in the United States, in which the embryo has implanted at the outside the main cavity of the uterus. More than 90% of the time, the embryo gets stuck on its way to the uterus in the fallopian tube, where it doesn’t have enough room to grow and can’t survive. If caught early, ectopic pregnancies are most commonly treated with one of the drugs in a typical medical abortion or surgery. If left untreated, the tube can rupture and cause uncontrollable bleeding.

Currently, fewer than 50 people die each year from ectopic pregnancies, according to University of California Davis complex family planning specialist Dr. Mitchell Creinin. However, OB-GYNs have expressed concern that that number could rise due to new post-Roe policies.

And through the Care Post Roe qualitative study, Grossman became concerned that some doctors are hiding how to treat the rarest type of ectopic pregnancy, which occurs when the embryo implants itself in a woman’s scar from a previous C-section. As the pregnancy grows, the uterus can rupture and cause what Grossman calls “catastrophic bleeding.” The Society for Maternal-Fetal Medicine recommends terminating ectopic pregnancies by cesarean scar because they carry fatal risks for pregnant women (complication rate can be as high as 44%) and rarely result in live births.

Though it’s a rare condition — an estimated 1/1,800 to 1/2,500 of all deliveries via C-section — Grossman said his team has already heard of some cases where patients have been unable to access recommended treatment. for pregnancies with a caesarean section. The tricky thing about this type of ectopic pregnancy, he said, is that the result isn’t necessarily 100 percent fatal. There have been reports of survival for the pregnant woman and baby, and if the embryo has cardiac activity, providers are sometimes reluctant to recommend discontinuation.

“[There have been] several cases where it’s been difficult to arrange treatment for those patients in the states where they live,” Grossman said. “And sometimes they just have to follow up with the patient because the patient can’t travel elsewhere. And they’re just watching the placenta grow through the uterine wall into the surrounding structures.It is very worrying indeed.

Patricia Santiago-Munoz, a high-risk ob-gyn in Texas, says the option to continue a risky pregnancy like this should be up to the patient. The maternal fetal medicine specialist at the University of Texas Southwestern Medical Center at Dallas published a blog post last August informing patients that treatment for ectopic pregnancies with C-section scarring is legal under the abortion law of Texas.

But as has been true in Texas and several of the 12 other states where abortion is currently banned, patients have reportedly experienced denials and delays in treatment. These laws establish harsh penalties for physicians, many of whom are confused about how to navigate narrow or vaguely worded “mother’s life” exceptions.

Legislators and health officials in multiple states are currently seeking to adopt more explicit health care exceptions in their abortion bans. But Grossman says determining what is life-threatening and how immediately life-threatening can be difficult and daunting.

“The problem in general with these exceptions is that medicine is not black and white; there’s a lot of gray,” Grossman said. “In many situations a patient can be fine and slowly start to get worse, and then a condition can suddenly get worse very quickly. How big is the chance of that happening considered too big? This is what doctors and hospital administrators are facing now in this new era.

Fear, not scaremongering

Many anti-abortion groups, meanwhile, are lobbying GOP lawmakers to oppose the proposed health care exceptions. In Tennessee, anti-abortion groups are clashing with state lawmakers who advocate changing the way the law criminalizes doctors. Sen. Richard Briggs (R-Knoxville), a heart surgeon, said last year he regrets voting for the ban after realizing how it could exacerbate medical emergencies, including ectopic pregnancies from C-section scarring.

Grossman acknowledges that Care Post Roe is a very limited study that is based on a relatively small number of anecdotes, many of which were presented anonymously. He said this was the best way to protect the identities of healthcare professionals and patients, many of whom currently fear prosecution for their medical decisions.

That fear isn’t unfounded, given that many hospital systems have instructed physicians not to speak publicly about the public health effects of Roe’s flip. An OB-GYN, Indiana Dr. Caitlin Bernard, is being investigated for telling a reporter that she treated a baby girl in Ohio, who was denied an abortion even though she was 10 and raped.

The study also invites participants to do in-depth follow-up interviews with UCSF researchers, and Grossman said he’s done about a dozen so far. If not, they don’t test the observations they receive beyond assessing whether they make clinical sense. He also said the observations so far have been very detailed.

And they mirror many similar stories told to reporters and researchers across the country and confirmed in other recent research, such as a Commonwealth Fund study that found higher rates of maternal and infant mortality in states with tight abortion restrictions and a study on women’s health issues which concluded that OB-GYNs practicing in states with severe abortion restrictions are less likely than OB-GYNs in abortion-entitled states to have received abortion training, and therefore less likely likelihood of offering optimal care in all cases.

The anti-abortion movement, meanwhile, has collectively shrugged at these findings. Among many anti-abortion groups, the American Association of Pro-Life Obstetricians and Gynecologists has engaged in a concerted media campaign to dispel stories about treatment denials as scaremongering. Instead they blame the doctors for their decisions.

“False claims abound that state restrictions on abortion will prevent doctors from being able to treat ectopic pregnancies, miscarriages, and other life-threatening complications during pregnancy (such as an intrauterine infection). This is patently absurd, since no state law restricting abortion prevents these conditions from being treated,” AAPLOG President-elect Dr. Christina Francis testified before Congress last July. The group is one of the plaintiffs in a lawsuit that would ban an abortion drug that post-Roe pregnant people have relied on to have safe early terminations, under the false narrative that the drug is unsafe.

An AAPLOG email to members sent Jan. 6 urged providers in its network to participate in the Care Post Roe study, but provide different stories than what the UCSF researchers are asking for.

“We encourage members to submit their stories about the abysmal care medical abortion patients receive and the horrendous complications you are treating in the emergency room because abortionists have abandoned their patients in the emergency room for complications management,” it reads. in the email. This is also the crux of one of their main arguments in the lawsuit: that patients are flooding emergency rooms due to the increased use of abortion drugs. Yet they are basing this claim on speculation and a small number of anecdotes.

Grossman is unaware of any such observations. But he noted that the team excluded proposals that were incomplete or vague or that didn’t make clinical sense and didn’t meet inclusion criteria, which were meant to reflect changes in care after a law change.

AAPLOG did not respond to a request for comment.

As doctors and abortion providers continue to warn of dire consequences to come, Grossman said her team has been receiving new stories every week about changes in medical care due to the abortion bans. He said UCSF continues to solicit study participants and will begin publishing their preliminary results in the next month or two.

“We hope these findings will be helpful to hospital systems as they are trying to find alternative ways to deliver care,” Grossman said.

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