Illinois collects data about who gets abortions. But it keeps race and ethnicity hidden.

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The Illinois Department of Public Health has long shielded from the public the full picture of who gets an abortion in this state.

The department provides some statistics online, including the county where Illinois patients live, the states where other patients come from, age groups, and even whether they’re married. But patients’ race and ethnicity — a key metric that helps illuminate potential disparities, identify trends and plug in gaps in health care — has never been revealed.

It’s not clear whether this restriction is legal. A 2013 state rule forbid releasing even aggregate data, meaning a summary of information, about race and ethnicity as well as a batch of other metrics about patients who receive abortions. But that rule is tied to a law that no longer exists. Now, after WBEZ inquired, the Illinois Department of Public Health said it is looking into whether this information should be made public.

“IDPH is reviewing the implications of the statute,” a public health department spokesman said in a statement. “We need a bit more time to ensure we are being as transparent as possible while following the law and protecting patient privacy.”

Illinois is one of 22 states that in the most recent reporting year withheld race and ethnicity data about abortion patients from the Centers for Disease Control and Prevention, or whose data didn’t meet reporting standards.

As Illinois prepares for a possible influx of tens of thousands more out-of-state patients seeking abortions — in the event Roe v. Wade is overturned — providers are trying to figure out if there’s going to be enough access to care, particularly in communities of color where access is already poor. But many doctors and community leaders who work in reproductive rights are torn between the desire to fully understand where those gaps in access may be, and the need to protect patients’ privacy.

“There’s the non-medical part of my brain who lives in this world as a person of color,” said Dr. Morgan Madison, a family medicine physician in Chicago who delivers babies and used to provide abortions. “Because abortion is such a polarizing topic that has so much stigma associated with it, my first thing is: Could that data be misused … and target groups of people.”

Madison said patients in her clinic already can be suspicious when asked to document their race, fearful of how the government would use the information or wondering if they would be treated differently based on what they look like.

“On the other hand, the medical public health side of my brain is like, the more data we know and the more we can break it down and the more we can look at associations, the more we can hopefully get to the root cause of inequities and use that to then address those directly,” Madison said.

Making the data public ‘to lobby for who needs what’

This level of secrecy isn’t typical for most public health data. Pick a social issue, and there’s a volume of information broken down by race: unemployment rates, the ballooning life expectancy gap between Black and Latino Chicagoans compared to white residents, little access to a checking account or food close to home.

Shining a light on disparities has fueled policy changes. For example, Illinois extended government-funded Medicaid health insurance to postpartum patients for up to a year after state public health data showed that the majority of pregnancy-associated deaths happened more than 40 days postpartum. Across the state, Black women are about three times as likely to die from a pregnancy-related condition as white women, according to the public health department’s most recent report on maternal deaths.

When COVID-19 vaccines first arrived, the Chicago Department of Public Health closely tracked by race who was getting them, then saturated 15 communities with doses when it became clear that Black and Latino residents were trailing white residents in immunizations. WBEZ used this data to document inequities in vaccine distribution across the region.

Race, ZIP codes, age groups. Experts say these are drivers and predictors that help them better understand the needs of communities, and when it comes to reproductive health care, these metrics could be used to help patients prevent pregnancies and instead plan their future families, perhaps reducing abortions.

“When people talk about abortion, there is this miseducation I believe for one, and misperception that it’s a poor planning issue, an issue of maybe a poor population or negligence,” said Jessica Davenport-Williams, co-founder of Black Girls Break Bread, a Chicago nonprofit that advocates for increasing access to health care and reducing disparities. “I always push back because this isn’t the only area where we’re like, give us the data. Let us see it, and then we can help a population.”

Access to more statewide data on the race and ethnicity of abortion patients could help lead to a better understanding of why people need or want abortions, said Dr. Allison Cowett, medical director of Family Planning Associates.

“We don’t know the bigger picture,” Cowett said. “I think this information could be useful to lobby for who needs what.”

She suggested looking at how other states have used their demographic data to understand trends in abortion, pointing out that without even national demographic data, providers can’t advocate for communities that could be impacted the most if Roe v. Wade is struck down.

At Cowett’s West Loop clinic, the majority of patients are Black or low-income. Nationally, based on states that do report data to the CDC, 38% of people who have abortions are Black, followed by 33% white, 21% Hispanic and 7% are other races or ethnicities.

Absent a deeper understanding of who gets abortions in Illinois, the close-knit community of providers who perform them share their own intel. That does not mean everyone wants the public to know more. Abortion is a particularly sensitive topic.

“It really has all this baggage attached to it,” said Brigid Leahy, a lobbyist at Planned Parenthood of Illinois since 1993.

A complicated history of data being withheld

The issue is not that data isn’t being collected. In fact, the Illinois Department of Public Health has been gathering data from providers on who gets an abortion for more than 25 years. There is a trove of information reported to the state, but much is hidden from the public. Not just race and ethnicity, but how much education patients have, the ZIP code where they live and the facility where they had an abortion.

This secrecy hearkens back to the years after Roe v. Wade made access to abortion a constitutional right in 1973. The Illinois Legislature at the time was far more conservative about abortion than it is today and fought to restrict it. Former veteran State Sen. Kirk Dillard recalled how some leading Democrats at the time were anti-abortion, a stark contrast to the blue politics of the current Illinois Legislature.

“It is reminiscent of what we are seeing in Texas, and in Mississippi, and across the south,” said Colleen Connell, executive director of the American Civil Liberties Union of Illinois, who led the organization’s reproductive rights work starting in the mid-1980s.

Today, abortion is banned in Texas after six weeks, and private citizens can sue anyone who helps a person get an abortion. Mississippi is trying to ban most abortions after 15 weeks, and much of the south and all states around Illinois would ban or further restrict abortion should Roe v. Wade fall, according to the Guttmacher Institute, which supports abortion rights and tracks health care policy. Some have already done so. All this would create a bigger pipeline of patients to Illinois.

During the 1970s through the 1990s, Illinois legislators passed a number of restrictions, in some cases overriding the vetoes of their Republican governors who supported abortion rights, recalled Ralph Rivera, who has lobbied in Springfield for decades with organizations that oppose abortion.

Lawmakers banned using taxpayer dollars for abortions. Minors had to notify their parents they were getting abortions or seek a waiver in court to do so. Physicians who performed abortions when, in their medical judgment there was a “reasonable likelihood” the fetus could have survived outside the womb, had to use a method that would have most likely preserved the life and health of the fetus, according to the Illinois Abortion Law of 1975.

“I always felt I worked hard,” Rivera said. “Nothing seemed easy, but we did win. Those were the heydays where I saw many victories as far as legislation passed into law.”

The goal, he said, was to protect women and their unborn babies.

But others say lawmakers were eroding patients’ ability to get abortions. The ACLU was regularly in court pushing back, and winning in almost every case.

In some instances, people who opposed abortion were targeting patients and their providers. Leahy recalled how during the 1980s and 90s, people against abortion would follow patients home after they received the procedure, take down their license plates and try to identify them.

“All of this was to make it, first of all stigmatize abortion, to make people feel bad about what they were doing and to otherize and separate it from regular mainstream health care, and also to put a lot of pressure on providers and patients,” Leahy said.

Abortion patients were stereotyped, Leahy said, as “irresponsible minority women who were sexually promiscuous” and “nice girls don’t get in trouble.”

To protect patients’ identities, Connell negotiated a consent decree with the Illinois Department of Public Health and the Illinois Attorney General’s office that was finalized in 1993. It defined what information the department can collect about abortion patients, but left it up to the department to make aggregate data public.

When the state started publicly reporting those abortion statistics, it left out race and ethnicity, according to a WBEZ review of state data.

Then, around 2012, the state public health department contemplated whether to make more information about abortion patients public, Connell recalled. The ACLU pushed back, worried that even without names of patients, someone could connect a person’s race, age and community and reveal their identity, which would violate the consent decree.

This led to a 2013 rule that appears to formalize what aggregate data about patients who receive abortions could and could not be disclosed to the public, including race and ethnicity. These rules fell under the Illinois Abortion Law.

However, in 2019 Gov. JB Pritzker signed into law the Illinois Reproductive Health Act, which effectively repealed the Illinois Abortion Law. The new law protects abortion in Illinois should Roe v. Wade be overturned.

Connell said that under the new law, the state could, “hypothetically speaking,” collect and publish more aggregate data about abortions. The ACLU would continue to weigh in to make sure patients’ privacy and security remained protected.

Rivera, the longtime lobbyist against abortion rights, said he too would like access to more data to further understand who is getting abortions in Illinois.

“Part of our argument is (providers) do target minority or poor communities, and the data would verify it,” he posited.

Illinois is in a far different place than it was 30-some years ago when Connell negotiated the consent decree. Pritzker is a pro-abortion rights Democratic governor and the state Legislature largely supports abortion rights. Still, Connell said she remains uneasy about what may happen next, as the U.S. Supreme Court considers striking down Roe v. Wade. More than two dozen states could outlaw or further restrict abortion.

“It very much feels like we’re going back to the bad old days given what’s happening around the country,” she said.

Connell worries providers and especially out-of-state patients could be at an outsized risk.

Kristen Schorsch covers public health and Cook County on WBEZ’s government and politics desk. Follow her @kschorsch.

via WBEZ Chicago

May 27, 2022 at 04:40PM

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