This Illinois law was supposed to help families. It’s failing them instead.

After a traumatic week of labor with their first child that ended in a cesarean section, Eleanor Grano and her husband were burned out.

They got home from the hospital after the major abdominal surgery with their newborn son, and with the help of family paid about $2,400 for a doula to care for their baby overnight for nearly a week. This allowed Grano and her husband E.J. Fagan to rest and recover. Their parents and siblings don’t live nearby.

Grano and Fagan say their experience was transformative. Having a doula watch over their baby boy as they slept brought Grano relief and gave her time to care for herself. They call him Cinco, the fifth Edward in the family.

Then the doula’s time was up. Grano struggled with postpartum anxiety and grew exhausted from the around-the-clock care. She feared Cinco would die in his sleep.

“It was just this forever, all-consuming experience for me that … after I’ve gone through three years of infertility, miscarriage, like all the battle wounds of infertility, that I was somehow still at risk of losing my child,” Grano recalls of her first baby born two years ago.

So as she and Fagan, of west suburban Riverside, thought about having another baby, they planned the pregnancy around a new Illinois law. It is intended to cover roughly a month of doula visits, capped at $8,000. Grano called it a lifeboat.

In 2024, Gov. JB Pritzker signed the Birth Equity Initiative to help prevent more women from dying, especially women of color. One key part of the law is broadening access to doulas.

Doulas are trained professionals who support families. They advocate on behalf of women in the delivery room and help manage pain, or take care of newborns in the first weeks of their lives.

People with private insurance, like Grano and Fagan, could have a doula with no cost sharing. The message to families: You won’t have to pay.

“Illinois has been the wild west of insurance companies,” Democrat state Rep. Robyn Gabel, a lead sponsor of the legislation, said at a news conference the day Pritzker signed the law. “They have pretty much done whatever they wanted, and in this administration, that is not going to be true any longer.”

Standing nearby was Lt. Gov. Juliana Stratton, who led the push for the law, which was part of a broader plan to invest in birth centers to diapers, an expense that can drain a family budget. She’s called it a national blueprint for saving the lives of pregnant women. It’s part of her campaign for U.S. Senate this fall.

But passing a law is one thing. Implementing it is another.

Private insurers were supposed to be ready to cover doulas on Jan. 1, but the law is still missing key pieces. Families are paying the price, according to a WBEZ investigation.

And only an estimated 30% of people with private insurance in Illinois have plans the state can regulate. For everyone else, it could be much harder to access this benefit.

Grano is due this week with a baby girl. She has spent nearly her entire pregnancy fighting her insurer, Blue Cross and Blue Shield of Illinois, the dominant insurer in the state, to cover her postpartum doula. Hours of messaging with various Blue Cross representatives. Lots of stress during her high-risk pregnancy, Grano says. The insurer wanted her to cover the cost — around $10,000 — then seek reimbursement later, a huge financial risk.

In another case, a Chicago couple who had their baby girl about five months ago, is still trying to get Blue Cross to fully reimburse them for their overnight doula. And the insurer is trying to claw back nearly $2,000 it already paid, according to records the family shared with WBEZ.

The roadblocks to families when they need support the most, for a benefit they’re legally entitled to, are happening across the region. In many cases, doula agencies say women stop trying to use insurance to pay for support because it’s so much work.

“The families that we know are often limited on resources are the ones that really need the doula support, and they’re not getting it,” says Anna Rodney, who owns Chicago Family Doulas, a large organization that works with more than 500 doulas.

Presented with WBEZ’s findings, Gabel says she plans to advance a bill that would fix a major shortcoming with the law.

“If a family is interested in having a doula, they should be able to have one,” she tells WBEZ.

Trying to prevent a crisis

Doulas are becoming more mainstream as doctors and governments try to address an alarming inequity.

In Illinois, Black women are three times as likely to die from a pregnancy-related medical condition compared to white women. One in 3 women die more than 60 days after giving birth, regardless of race.

Research shows having a doula is linked to better health outcomes for mothers and babies, including fewer premature births and lower C-section rates.

Pritzker started doula coverage for families with low incomes or disabilities in the state’s Medicaid health insurance program about two years ago, joining nearly 30 other states.

With private insurance, Grano knew she’d have to wait longer. But she remembers thinking: This is what I need to get ahead of the anxiety that consumed me after my first baby was born.

So when January rolled around, and the doula benefit began, Grano reached out to Blue Cross to confirm she was eligible. She wasn’t even pregnant yet.

A customer service agent tells her the benefit isn’t available, Grano recalls. She contacts her two state representatives and relays what’s happening.

They intervene immediately, and she learns her benefit starts when her health insurance plan renews July 1.

Relieved, she undergoes an embryo transfer and becomes pregnant with a girl.

“I’m not going to have to feel like I’m in a crisis for the second pregnancy,” Grano remembers thinking.

In May, Blue Cross’ then chief medical officer says in a news release how covering doulas, among other providers, “strengthens the network of care around moms, babies and families and reflects our long-term commitment to maternal and infant health in Illinois.”

Come July, Blue Cross tells Grano she could have 32 doula visits. She tries to book her postpartum doula for October when she’s due for another C-section. She quickly hits a wall.

Blue Cross tells her there are only five doulas in their network for the entire Chicago area, according to messages Grano shared with WBEZ. In-network providers are typically cheaper than those out of network. And if Grano could stay in her network, the doula bills Blue Cross, not her.

But the five doulas don’t work out. She learns she’ll have to pay up front and then ask for reimbursement. The cost: around $10,000 for a month of overnight stays. Grano and Fagan fear they will never get paid back.

Throughout months of messages with Blue Cross, Grano’s frustration grows. She tells them she’s stressed and overwhelmed, how she has a high-risk pregnancy with chronic high blood pressure and a history of postpartum depression. She’s unemployed and juggling a toddler at home.

“I do not want to wait until I am postpartum and potentially struggling to figure out how to access this care,” she writes in August to her Blue Cross “wellbeing health advisor.”

She points out that the law requires no cost-sharing for families.

“Requiring patients to have thousands of dollars available up front creates a significant financial barrier to accessing a covered benefit,” Grano writes. “As a woman of color, the law’s goal of addressing racial inequities in maternal health is also deeply meaningful to me.”

In a later exchange, the Blue Cross advisor apologizes to Grano for how she’s feeling and says it’s good she’s communicating concerns.

“Congratulations and thank you for allowing me to be a part of this special time in your life!” the advisor writes.

Fed up with Blue Cross, Grano files a complaint with the Illinois Department of Insurance.

Fagan, Grano’s husband, calls what Blue Cross is doing “malicious compliance.” He’s an associate professor of political science at the University of Illinois Chicago who studies how legislators use information to make decisions. He uses Grano’s advocacy as an example to students.

“Clearly, there’s some note in her file that she’s like a VIP or a troublemaker or something because that has gotten us better care,” Fagan says. By “better care,” he means Blue Cross has been checking in with Grano regularly.

Blue Cross spokesperson Tricia Ament declined to discuss Grano’s case. In a statement, she says the insurer is adding more in-network doulas, but would not say how many.

Too good to be true

Grano’s experience isn’t isolated. So many calls pour in to Chicago Family Doulas when the doula benefit starts this year that Rodney, its owner, hires an extra employee to answer them. But most of the time, families can’t get straight answers from their insurers and can’t afford a doula otherwise, she says.

“Every once in a while I see that somebody got coverage, and I’m like, “Oh my gosh, that’s insane,” Rodney says. “We’ll ask them, ‘What did you do?’ But I almost think it’s like a fluke or working really, really hard resubmitting, resubmitting.”

She mentions a rare success story of sorts: Katie Lombardi and her husband Louis Massard. Their daughter Clara was born in May, joining big sister Elia, who is 3.

Lombardi verifies with their insurer, Blue Cross, multiple times that they are eligible for a postpartum doula, she tells WBEZ. Customer service representatives never mention having to use a doula in-network, she says.

“The whole thing honestly seemed too good to be true,” says Lombardi, who lives in Andersonville on the North Side.

They hire a doula who tends to Clara overnight — feeding and swaddling her, washing bottles, folding laundry — as the family tries to get their older kiddo to sleep and to rest themselves. She comes twice, then Lombardi and Massard hit pause in a moment of panic after Blue Cross indicates they won’t cover it.

Then a check arrives in the mail reimbursing them. So they decide to try again and hire another overnight doula, who comes around twice a week for a few weeks. Their total cost out of pocket: about $4,500.

Again, Massard submits claims to Blue Cross. Some are fully paid. Others are not. It doesn’t make sense why, he says.

“This just reinforces why so many people don’t trust insurance companies,” Lombardi says. “You feel like insurance companies are almost never making decisions that are in the interest of their real customers, people like us on the other side of it.”

Like Grano, Massard spends hours going back and forth with Blue Cross, navigating an alphabet soup of billing codes and receipts. He includes detailed cover sheets to help Blue Cross understand the claims he submits. Four claims have been reimbursed so far after a cycle of angry calls and messages, he explains.

Blue Cross still owes them about $1,800 and is trying to claw back around $1,800 it already reimbursed, Massard says.

He’s an attorney and writes an appeal to Blue Cross citing the Birth Equity Initiative and asking for an explanation of why the same claims for the same services are being treated differently.

“The best you can hope for after a contentious phone call with them is that the status online will change the following day, and then maybe maybe a week later they might issue a check — or they might issue a check and then a week later ask for their money back,” Massard says.

Ament declined to discuss Lombardi and Massard’s experience.

‘There is no meaningful oversight’

One of the reasons some families can’t get doulas paid for is because the majority of people in Illinois with private insurance have plans the state can’t regulate, according to the Illinois Department of Insurance. For these families, their insurers aren’t required by the state to cover doulas, though they can, says Caron Brookens, a spokesperson for the state insurance department.

What’s more, for people whose insurers are required by the Birth Equity Initiative to cover doula services, legislators left a key part out of the law. They did not create a standard for how many doulas insurers must have in their networks or how far people have to travel to access one, Brookens confirms.

Insurers must meet what’s called a “network adequacy” standard for other types of providers in their networks, from pediatricians to orthopedic surgeons. Without one for doulas, insurers can decide how many they contract with as part of their networks.

If it’s a small pool, families might have to do what Grano and Lombardi did: find an out-of-network doula, pay them if they can, then try to get reimbursed by their insurer.

It’s confusing for families who see politicians tout the benefit of the Birth Equity Initiative: no cost-sharing.

Without a standard for doulas, insurers don’t have to tell state insurance regulators how many are in their networks. They also don’t have to say how much in claims they’ve paid for doula services, the department responded to a WBEZ public records request. That makes it hard to know if and where there are gaps in access.

“The implementation of the law on … private insurance has been lacking, and on private insurance I think there is no meaningful oversight,” says Kathy Waligora, deputy director of external affairs at EverThrive Illinois, a statewide advocacy group for maternal and child health. “It’s not clear that there are enough doulas to have an adequate network, but you could start trying. You could start trying to hold these companies to these standards.”

Gabel, a lead sponsor of the law, says the bill she plans to file in January would require network adequacy for doulas.

“There needs to be a little more pressure to make sure that the insurance companies recruit doulas and make sure that they have doulas in their networks,” Gabel says.

Ann Gillespie, director of the state insurance department, declined an on-the-record interview. The department is charged with implementing and enforcing the law.

Stratton, who spearheaded the law, also declined an interview request.

In response to questions, Brookens says the department can investigate complaints and encourages families and providers to file them. The state also audits insurers to see if they violate the law. But any violations for doula coverage likely won’t be reported until 2027 or 2028 because the state typically reviews at least a full year of records, and the doula benefit for private insurance is new.

Grano’s complaint is one of a few related to doula services filed with the state. The department would not provide them, citing confidentiality.

Rodney says it’s a big ask for her more than 500 doulas to apply to join insurance networks. They’re independent contractors, not employees. It’s a cumbersome and time-consuming process.

And she wonders how much insurers would reimburse her doulas and how long it would take them to get paid. Some live paycheck to paycheck.

Insurers taking weeks, even months to pay providers is a common complaint. Now Rodney pays her doulas weekly after they work with families.

Blue Cross relents

After WBEZ reached out to Blue Cross this fall about Grano’s experience, the insurer expedited her case and added her doula to its network. She and Fagan no longer have to pay $10,000 up front and risk not getting paid back.

Now they have 16 visits with a postpartum doula, half as many as Blue Cross originally said. This is a potential limit laid out in the law.

“Am I still worried that they’re not going to pay up? Yes,” Fagan says. “We’re going to fight it” if they don’t.

Grano worries other families can’t spend as much time as she has battling for a legal benefit.

“I definitely did not think it was going to take, what, nine months of contacting my health insurance to get it covered,” she says. “I can’t imagine what ordinary family has that type of time on their hands.”

She’s frustrated that Democrats tout the progressive values of living in a politically blue state, yet the finish line comes not when they pass laws, but when families can use them, she says.

“I’m excited,” Grano says,” to tell my daughter about what I got to do during her pregnancy — to fight for not just me.”

Kristen Schorsch is a senior reporter covering public health for WBEZ.