Colorado passed laws two years ago to try to reduce the problem of women being ignored or mistreated during their pregnancy care, but advocates say more needs to be done — particularly for mothers of color.

In 2021, Colorado adopted a law requiring the state’s Civil Rights Division to accept complaints about mistreatment in medical settings during pregnancy and the postpartum period, though the division is not required to investigate all claims. The Civil Rights Division declined to release any information about the number or type of complaints it has received.

Senate Bill 21-193, which mandated that the division accept complaints, also required hospitals and other facilities where patients give birth to have policies that mothers be allowed to bring a support person or doula, in addition to their romantic partner.

Another law passed that year required the state’s maternal mortality review committee to recommend ways to collect more data about marginalized groups of people, including any mistreatment they may have experienced.

Indra Lusero, director of the nonprofit Elephant Circle, said the organization is still working on getting state and federal agencies to take mistreatment in health care settings seriously as a form of discrimination and to investigate it. Elephant Circle focuses on people of color and LGBTQ people who can give birth.

A bad birth outcome is traumatic on its own, but there’s another layer of pain if a family feels that it could have been prevented if providers had listened to them, said Lusero, who uses they/them pronouns. Since medical providers are trying to avoid legal liability, it’s rare for a family to get acknowledgment of a mistake, let alone any kind of assurance that anything will change — particularly if the mistake happens during birth, with doctors and nurses who the parents may never see again, they said.

“People feel particularly harmed by the fact that they weren’t listened to, and it’s a distinct kind of violation,” they said.

Brace Gibson, director of policy and advocacy at the Colorado Perinatal Care Quality Collaborative, said the state is revamping its Health eMoms survey to ask about bad experiences with health care during pregnancy and birth. Currently, the survey has questions about whether mothers are breastfeeding, their opinions on vaccines, if they use certain drugs and whether their families are facing financial struggles.

Having data on experiences with health care, particularly when it’s broken down by demographics like ethnicity, will help gather support for changes, Gibson said.

“We’re hoping more policy efforts will come out of that,” she said.

The Colorado Department of Health Care Policy and Financing has requested about $918,000 in state funds to cover doula services for people insured by Medicaid, as six states have done. Doulas are trained in supporting clients during pregnancy, birth and the postpartum period, but aren’t medical professionals.

Staff for the legislative Joint Budget Committee recommended the additional funds, but noted concerns that Colorado may not have enough trained doulas to meet demand, particularly since most now work with affluent clients who pay out-of-pocket.

A bill in the legislature to allow Medicaid to pay for community health workers could also present an opportunity to bring peer support specialists into maternal health care, if it passes, Gibson said. Peer support specialists share an experience with their clients — such as recovering from addiction — and have received training about when they can talk a client through a struggle and when to call for professional help.

For those who are pregnant or who have given birth, that could mean pairing them with a more-experienced mom who’s been trained, either via a community group or a doctor’s office, Gibson said. It can be a fine line to integrate peer support into medical care, however, because clients may not be comfortable with someone they see as part of the system, she said.

“We had Sisters who lost babies”

In 2020, Colorado had about 4.8 infant deaths per 1,000 babies born alive, which was the 14th-lowest rate in the country, according to the Centers for Disease Control and Prevention.

Black infants were about twice as likely to die before their first birthday as white infants, though, and Hispanic babies were also at increased risk in Colorado, according to March of Dimes. Asian babies had a similar risk level to white babies, and the number of American Indian infants was too small to make meaningful comparisons.

It’s more difficult to compare Colorado’s rate of maternal mortality to the rest of the country, because the state counts deaths up to a year after the birth, while the CDC’s statistics cut off at six weeks postpartum. In Colorado, Native American women and those who didn’t attend college were more likely to die during or after pregnancy than other groups, according to the state’s maternal mortality review committee.

Nationwide, Black women also are at elevated risk of maternal mortality, and Colorado’s review committee suggested the state health department should also keep an eye on that group, given the disparity in the country as a whole. The number of maternal deaths in Colorado is small, with 94 recorded between 2014 and 2016, so a few people who were lost — or saved — can make disparities appear much larger, or smaller.

Velveta Golightly-Howell, CEO of the Black professional women’s group Sister-to-Sister and a member of one of the first committees advising the state health department about racial disparities, said it’s particularly difficult for Black women to get adequate care. Medical providers are particularly likely to dismiss Black patients, underestimating their pain and not believing that they know their bodies, she said.

“We had (members of) Sisters who lost babies. We had Sisters who developed chronic conditions,” she said.

Golightly-Howell said her own family experienced dismissal in medical settings: After her sister passed out while shopping, the emergency room doctor wanted to send her home with some pills. Golightly-Howell told her not to leave without additional testing, which uncovered that she’d had a small stroke.

Golightly-Howell said Sister-to-Sister is working on developing workshops for providers to make them aware of disparities and unconscious bias, and for patients on how to advocate for themselves. People can’t always do that during a medical emergency, though, so expanding access to patient-focused providers like doulas could help, she said.

“We want to get to the heart of the problem,” she said.

“Not a check box for what is the person telling me”

Providers tend to make negative assumptions about Black patients, which doesn’t allow for helpful conversations, especially when combined with short appointment times, said Alliss Hardy, community and family development manager at Families Forward Resource Center in Denver.

“They tend to think we’re argumentative and we’re not going to listen and we don’t care” about our health, she said.

Families Forward offers lactation support, help paying for utilities, guidance on signing up for health insurance and finding a doctor, parenting classes, and free diapers and other baby items, depending on what a family needs. They also try to give clients the confidence to push back if they feel their health concerns are being ignored, Hardy said.

“The No. 1 thing is for the birthing person and the family to be knowledgeable of themselves and their bodies,” she said. “It’s OK to leave and find someone else to care for you.”

The CDC has started a campaign called “Hear Her,” urging health care providers to take time to listen to their patients’ concerns, and to educate them about symptoms they should never ignore.

Those include:

• Headache that won’t go away or gets worse over time
• Dizziness or fainting
• Vision changes
• Fever of 100.4 degrees or higher
• Extreme swelling in the hands or face
• Thoughts of harming oneself or the baby
• Trouble breathing
• Chest pain or fast heartbeat
• Severe nausea or vomiting
• Severe abdominal pain that doesn’t go away
• Fetal movements stop or slow down
• Swelling, redness, or pain in arms or legs
• Vaginal bleeding or fluid leaking during pregnancy (or severe bleeding after birth)
• Overwhelming fatigue

It’s crucial that government agencies like the CDC and large organizations such as the March of Dimes prioritize maternal health and equity, because they have the resources for those kinds of campaigns, said Katie Breen, vice president of programs at the Colorado Perinatal Care Quality Collaborative.

“Having the federal government’s support is crucial, because a tiny nonprofit’s not going to be able to pay to have something translated into 20 languages,” she said.

The CDC also offers patients a rough script for raising concerns, including a reminder to describe the symptoms in detail and keep track of how long they’ve lasted. Marginalized patients can still be in a bind, though, knowing they need to speak up for themselves but also that they could be labeled as argumentative or accused of drug-seeking, Breen said. That makes it particularly important for patients to have an advocate who can speak for them, she said.

It’s not necessarily that medical providers decide they’re going to dismiss a patient’s concerns, but the health care system is set up to emphasize expertise and things that can be measured, Lusero said. That’s a problem, because the patient is assumed to know less than the obstetrician and nurses, and feeling that something is wrong isn’t quantifiable, like someone’s pulse or blood pressure, they said.

“There’s not a check box (in the medical record) for what is the person telling me,” they said.

“It’s the system”

Nonprofits in Colorado are trying different models to provide advocates who patients trust, but who can also speak to providers in ways that seem credible.

Allison Mosqueda, program director for the Nurse-Family Partnership at Invest in Kids, said the twice-monthly nurse visits the program offers aren’t meant to replace primary care, but the nurses can help families navigate the system and coordinate with their doctors if they hear something worrisome.

The nurses are able to meet with pregnant patients and new mothers for an hour at a time, giving them a better view on families’ needs than their obstetricians can get in a 20-minute visit, Mosqueda said. Mothers who participated in the Nurse-Family Partnership were about 35% less likely to develop high blood pressure during pregnancy, and 18% less likely to give birth prematurely. Maternal and infant mortality are rare enough that they haven’t shown a decrease among participants.

“You think about the complexity of a person’s life, especially being pregnant for the first time,” she said. “It’s not the fault of individual providers. It’s the system.”

Shawn Taylor, director of programs at Families Forward Resource Center, said it would help if Medicaid and commercial insurance covered doula services, though some grant-funded programs make them available for low-income women at a higher risk of complications.

“It goes back to us not getting the quality of care we need,” she said.

Having a doula or support person present can help, but may not overcome the “expertise hierarchy,” particularly if the doula is a person of color, Lusero said. Doulas aren’t medical providers, and doctors or nurses can order them to leave if they push back too hard, they said.

“Doulas don’t really have any power,” they said. “Even after we passed that law (requiring hospitals to allow a doula or support person), we hear the same things keep happening.”