When Alma Adams’s daughter complained of abdominal pain during a difficult pregnancy, her doctor overlooked her cries for help. The North Carolina congresswoman’s daughter had to undergo a last-minute caesarean section. She and her baby daughter, now 16, survived.

“It could have gone another way. I could have been a mother who was grieving her daughter and granddaughter,” Adams told the Guardian, following a week in which the White House highlighted the crisis of pregnancy-related deaths among Black women. According to the Centers for Disease Control and Prevention (CDC), Black women die at three times the rate of white women.

For Adams and other Black women in Congress, who formed the Black Maternal Health Caucus, the issue hits close to home. Last week, during Black Maternal Health Week, they talked about how their experiences and the work of advocates had propelled legislation, known as the Black Maternal Health Momnibus Act of 2021, to fight a healthcare crisis that disproportionately affects Black women regardless of income.

The US has the highest maternal mortality rate among industrialized countries. Since 2000, the maternal mortality rate has risen nearly 60%, making it worse now than it was decades earlier. More than half of these deaths are preventable.

Health experts point to the fact that other industrialized countries have significantly different approaches to motherhood than the US, including paid maternity leave, access to comprehensive postpartum care and enough maternity care providers, especially midwives, to meet the needs of their populations. Policy advocates add that the crisis among Black women is a symptom of racism in the nation’s healthcare system – from who has access to care to attitudes toward Black people and their bodies.

“It doesn’t matter what your socioeconomic status is. It doesn’t matter how much insurance you have, or how much education you have,” Adams said, adding that her daughter, Jeanelle Lindsay, had a master’s degree and health insurance. “Those things don’t matter. This could happen to anyone. Look at women like Beyoncé and Serena Williams, who had these near misses because the doctors really didn’t pay the kind of attention that they should have.”

Black women in the House used the week of recognition to bring attention to several bills that are part of a sweeping Momnibus package to address the dangers of birthing while Black. Their efforts to elevate the longtime work of organizations such as the Black Mamas Matter Alliance showed the power of representation in putting issues affecting Black women on the congressional agenda, said Lauren Underwood, an Illinois congresswoman and registered nurse.

“It takes women in these spaces to call out problems, set an agenda, and bring together a coalition of legislators, advocates, and community members to work toward comprehensive, evidence-based solutions that will save moms’ lives,” Underwood said in an email.

In January 2019, after Underwood received her committee assignments, Adams met with her to see if she wanted to launch a caucus focused on Black maternal health. One of Underwood’s friends, an epidemiologist at the CDC, had died three weeks after she gave birth. “I was still grappling with her death when I came to Congress,” Underwood said.

Three months later, they launched the caucus with 53 founding members, including Ayanna Pressley, Lucy McBath and Barbara Lee. Today, it has 115 members from both parties.

After consulting with maternal health advocacy groups, Underwood and Adams introduced the Momnibus Act in March 2020, nine bills aimed at combating maternal health disparities through investment in community-based programs and other efforts to rectify social determinants of health – the conditions in which people live, work and grow up – that affect who lives and who dies in childbirth.

Their legislative pursuit was timely, coming before a pandemic that would bring racial health disparities to the public’s attention. Between 2019 and 2020, the mortality rate for Black and Latina women and birthing people rose during the first year of the pandemic.

Kamala Harris, the nation’s first Black and South Asian female vice-president, amplified the issue last week during a speech at the Century Foundation, a progressive thinktank based in Washington DC. Harris called for “building a future in which being Black and pregnant is a time filled with joy and hope rather than fear”.

As a US senator from California, Harris was lead sponsor for the Senate version of the Momnibus Act in 2020, which stalled in committee. Underwood and Adams, along with Senator Cory Booker of New Jersey, reintroduced the Momnibus bill in February 2021.

Most of the proposals in the package are included in the Build Back Better Act, a social spending bill that is stuck in gridlock.

“Were it not for Black women in the Congressional Black Caucus, there would not be a Black Maternal Health Caucus,” said the Massachusetts representative Ayanna Pressley. “When we say that we are the voice of Congress, we mean that.”

Pressley lost her paternal grandmother, whom she never knew, when she died giving birth to Pressley’s uncle in the 1950s. “Decades later, the Black maternal mortality crisis continues to rob us of our loved ones and to destabilize families,” she said during the Century Foundation event.

What explains the disparities in outcomes between Black and white mothers boils down to what Pressley called “policy violence”. It’s not just the discrimination that Black women and birthing people experience, but also the lack of access to quality healthcare and medical coverage.

“These are the result of centuries of laws in a systematic, systematically racist health care system that too often discounts our pay, ignores our voices, disregards our lives,” Pressley said. “Birthing while Black should not be a death sentence.”

In November 2021, Joe Biden signed into law one of the bills in the Momnibus package that invests $15m in maternity care for veterans. But other legislative efforts remain stalled in Congress. Eight bills that were part of the original Momnibus package are part of the Build Back Better Act, according to a tracker by The Century Foundation. They include awarding grants to community organizations to help pregnant people find affordable housing, documenting transportation barriers for pregnant and postpartum people, expanding food stamp eligibility and permanently expanding Medicaid coverage for mothers in every state for a year after childbirth.

And on Friday, Booker and seven other lawmakers introduced Mamas First Act, which would expand Medicaid to cover services from doulas and midwives.

“We’ve made historic progress, from the enactment of the first bill in my Black Maternal Health Momnibus Act to the recent cabinet meeting Vice-President Harris led, the first-ever White House cabinet meeting convened to address maternal health disparities as a national priority,” Underwood said.

Adams pointed to another piece of the legislation that feels very close to home: the Kira Johnson Act, named after a 39-year-old Black mother who, after complaining of abdominal pain, died in 2016 from a hemorrhage following a routine caesarean section. The bill would direct the health and human services department to send grants to community groups focused on improving the maternal health outcomes for Black, Latino and other marginalized communities and for training to reduce racial bias and discrimination among healthcare providers.

The connection between Johnson’s and her daughter’s situations resonated with Adams. The pain they experienced was dismissed – a familiar form of racial bias that the Momnibus package attempts to address.

“Either you have a mother, you are a mother, or you know women who are moms,” Adams said. “When we raise the tide for Black women, who are among the most marginalized and the most vulnerable, we ultimately raise the tide for all women.”