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| Public Act 101-0038
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| HB0001 Enrolled | LRB101 04044 RJF 49052 b |
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AN ACT concerning State government.
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Be it enacted by the People of the State of Illinois,
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represented in the General Assembly:
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Section 1. Short title. This Act may be cited as the Task |
Force on Infant and Maternal Mortality Among African Americans |
Act.
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Section 5. Findings. Based upon an April 11, 2018 New York |
Times article on "Why America's Black Mothers and Babies Are in |
a Life-or-Death Crisis", the General Assembly finds the |
following:
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(1) From 1915 through the 1990s, amid vast improvements |
in hygiene, nutrition, living conditions and health care, |
the number of babies of all races who died in the first |
year of life dropped by over 90% — a decrease unparalleled |
by reductions in other causes of death. But that national |
decline in infant mortality has since slowed. In 1960, the |
United States was ranked 12th among developed countries in |
infant mortality. Since then, with its rate largely driven |
by the deaths of black babies, the United States has fallen |
behind and now ranks 32nd out of the 35 wealthiest nations. |
Low birth weight is a key factor in infant death, and a new |
report released in March by the Robert Wood Johnson |
Foundation and the University of Wisconsin suggests that |
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the number of low-birth-weight babies born in the United |
States — also driven by the data for black babies — has |
inched up for the first time in a decade.
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(2) Black infants in America are now more than twice as |
likely to die as white infants — 11.3 per 1,000 black |
babies, compared with 4.9 per 1,000 white babies, according |
to the most recent government data — a racial disparity |
that is actually wider than in 1850, 15 years before the |
end of slavery, when most black women were considered |
chattel. In one year, that racial gap adds up to more than |
4,000 lost black babies. Education and income offer little |
protection. In fact, a black woman with an advanced degree |
is more likely to lose her baby than a white woman with |
less than an eighth-grade education.
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(3) This tragedy of black infant mortality is |
intimately intertwined with another tragedy: a crisis of |
death and near death in black mothers themselves. The |
United States is one of only 13 countries in the world |
where the rate of maternal mortality — the death of a woman |
related to pregnancy or childbirth up to a year after the |
end of pregnancy — is now worse than it was 25 years ago. |
Each year, an estimated 700 to 900 maternal deaths occur in |
the United States. In addition, the Centers for Disease |
Control and Prevention reports more than 50,000 |
potentially preventable near-deaths per year — a number |
that rose nearly 200% from 1993 to 2014, the last year for |
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which statistics are available. Black women are 3 to 4 |
times as likely to die from pregnancy-related causes as |
their white counterparts, according to the Centers for |
Disease Control and Prevention — a disproportionate rate |
that is higher than that of Mexico, where nearly half the |
population lives in poverty — and as with infants, the high |
numbers for black women drive the national numbers.
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(4) In her 2014 testimony before the United Nations |
Committee on the Elimination of Racial Discrimination, |
Monica Simpson, the Executive Director of SisterSong, the |
country's largest organization dedicated to reproductive |
justice for women of color, testified that the United |
States, by failing to address the crisis in black maternal |
mortality, was violating an international human rights |
treaty. Following this testimony, the committee called on |
the United States to "eliminate racial disparities in the |
field of sexual and reproductive health and standardize the |
data-collection system on maternal and infant deaths in all |
states to effectively identify and address the causes of |
disparities in maternal and infant-mortality rates". No |
such measures have been forthcoming. Only about half the |
states and a few cities maintain maternal-mortality review |
boards to analyze individual cases of pregnancy-related |
deaths. There has not been an official federal count of |
deaths related to pregnancy in more than 10 years. An |
effort to standardize the national count has been financed |
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in part by contributions from Merck for Mothers, a program |
of the pharmaceutical company, to the CDC Foundation.
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(5) The crisis of maternal death and near-death also |
persists for black women across class lines.
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(6) The reasons for the black-white divide in both |
infant and maternal mortality have been debated by |
researchers and doctors for more than 2 decades. But |
recently there has been growing acceptance of what has |
largely been, for the medical establishment, a shocking |
idea: for black women in America, an inescapable atmosphere |
of societal and systemic racism can create a kind of toxic |
physiological stress, resulting in conditions — including |
hypertension and pre-eclampsia — that lead directly to |
higher rates of infant and maternal death. And that |
societal racism is further expressed in a pervasive, |
longstanding racial bias in health care — including the |
dismissal of legitimate concerns and symptoms — that can |
help explain poor birth outcomes even in the case of black |
women with the most advantages.
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(7) Science has refuted the theory that high rates of |
infant death in American black women has a genetic |
component. A 1997 study published by 2 Chicago |
neonatologists, Richard David and James Collins, in The New |
England Journal of Medicine found that babies born to new |
immigrants from impoverished West African nations weighed |
more than their black American-born counterparts and were |
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similar in size to white babies, and were more likely to be |
born full term, which lowers the risk of death. In 2002, |
the same researchers further found that the daughters of |
African and Caribbean immigrants who grew up in the United |
States went on to have babies who were smaller than their |
mothers had been at birth, while the grandchildren of white |
European women actually weighed more than their mothers had |
at birth. It took just one generation for the American |
black-white disparity to manifest.
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(8) Though it seemed radical 25 years ago, few in the |
field now dispute that the black-white disparity in the |
deaths of babies is related not to the genetics of race but |
to the lived experience of race in this country. In 2007, |
Richard David and James Collins published an even more |
thorough examination of race and infant mortality in the |
American Journal of Public Health, again dispelling the |
notion of some sort of gene that would predispose black |
women to preterm birth or low birth weight. Based upon his |
years of research and study on the subject, David, a |
professor of pediatrics at the University of |
Illinois-Chicago, stated that for "black women...something |
about growing up in America seems to be bad for your baby's |
birth weight".
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(9) People of color, particularly black people, are |
treated differently the moment they enter the health care |
system. In 2002, the groundbreaking report "Unequal |
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Treatment: Confronting Racial and Ethnic Disparities in |
Health Care", published by a division of the National |
Academy of Sciences, took an exhaustive plunge into 100 |
previous studies, careful to decouple class from race, by |
comparing subjects with similar income and insurance |
coverage. The researchers found that people of color were |
less likely to be given appropriate medications for heart |
disease, or to undergo coronary bypass surgery, and |
received kidney dialysis and transplants less frequently |
than white people, which resulted in higher death rates. |
Black people were 3.6 times as likely as white people to |
have their legs and feet amputated as a result of diabetes, |
even when all other factors were equal. One study analyzed |
in the report found that cesarean sections were 40% more |
likely among black women compared with white women. |
(10) In 2016, a study by researchers at the University |
of Virginia examined why African-American patients receive |
inadequate treatment for pain not only compared with white |
patients but also relative to World Health Organization |
guidelines. The study found that white medical students and |
residents often believed incorrect and sometimes |
"fantastical" biological fallacies about racial |
differences in patients. For example, many thought, |
falsely, that blacks have less-sensitive nerve endings |
than whites, that black people's blood coagulates more |
quickly and that black skin is thicker than white. For |
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these assumptions, researchers blamed not individual |
prejudice but deeply ingrained unconscious stereotypes |
about people of color, as well as physicians' difficulty in |
empathizing with patients whose experiences differ from |
their own. In specific research regarding childbirth, the |
Listening to Mothers Survey III found that one in five |
black and Hispanic women reported poor treatment from |
hospital staff because of race, ethnicity, cultural |
background or language, compared with 8% of white mothers.
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(11) Researchers have worked to connect the dots |
between racial bias and unequal treatment in the health |
care system and maternal and infant mortality; however, |
based upon the preceding findings, it is clear that more |
must be done, and the General Assembly finds that a Task |
Force is necessary to work to establish best practices to |
decrease infant and maternal mortality among African |
Americans in Illinois.
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Section 10. Task Force on Infant and Maternal Mortality |
Among African Americans.
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(a) There is hereby created the Task Force on Infant and |
Maternal Mortality Among African Americans to work to establish |
best practices to decrease infant and maternal mortality among |
African Americans in Illinois.
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(b) The Task Force shall consist of the following members:
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(1) the Director of Public Health, or his or her |
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designee;
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(2) the Director of Healthcare and Family Services, or |
his or her designee;
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(3) the Secretary of Human Services, or his or her |
designee;
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(4) two medical providers who focus on infant and |
community health appointed by the Director of Public |
Health;
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(5) two obstetrics and gynecology (OB-GYN) specialists |
appointed by the Director of Public Health;
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(6) two doulas appointed by the Director of Public |
Health. For the purposes of this paragraph (6), "doula" |
means a professional trained in childbirth who provides |
emotional, physical, and educational support to a mother |
who is expecting, is experiencing labor, or has recently |
given birth;
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(7) two nurses appointed by the Director of Public |
Health;
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(8) two certified nurse midwives appointed by the |
Director of Public Health;
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(9) four community experts on maternal and infant |
health appointed by the Director of Public Health;
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(10) one representative from hospital leadership |
appointed by the Director of Public Health;
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(11) one representative from a health insurance |
company appointed by the Director of Public Health; |
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(12) one African American woman of childbearing age who |
has experienced a traumatic pregnancy, which may or may not |
have included the loss of a child, appointed by the |
Director of Public Health;
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(13) one physician representing the Illinois Academy |
of Family Physicians; and |
(14) one physician representing the Illinois Chapter |
of the American Academy of Pediatrics. |
(c) The Task Force shall elect a chairperson from among its |
membership and any other officer it deems appropriate. The |
Department of Public Health shall provide technical support and |
assistance to the Task Force and shall be responsible for |
administering its operations and ensuring that the |
requirements of this Act are met.
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(d) The members of the Task Force shall receive no |
compensation for their services as members of the Task Force.
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Section 15. Meetings; duties.
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(a) The Task Force shall meet at least once per quarter |
beginning as soon as practicable after the effective date of |
this Act.
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(b) The Task Force shall:
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(1) review research that substantiates the connections |
between a mother's health before, during, and between |
pregnancies, as well as that of her child across the life |
course;
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(2) review comprehensive, nationwide data collection |
on maternal deaths and complications, including data |
disaggregated by race, geography, and socioeconomic |
status;
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(3) review the data sets that include information on |
social and environmental risk factors for women and infants |
of color;
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(4) review better assessments and analysis on the |
impact of overt and covert racism on toxic stress and |
pregnancy-related outcomes for women and infants of color;
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(5) review research to identify best practices and |
effective interventions for improving the quality and |
safety of maternity care;
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(6) review research to identify best practices and |
effective interventions, as well as health outcomes before |
and during pregnancy, in order to address pre-disease |
pathways of adverse maternal and infant health;
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(7) review research to identify effective |
interventions for addressing social determinants of health |
disparities in maternal and infant health outcomes; and
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(8) produce an annual report detailing the Task Force's |
findings based upon its review of research conducted under |
this Section, including specific recommendations, if any, |
and any other information the Task Force may deem proper in |
furtherance of its duties under this Act.
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Section 20. Report. Beginning December 1, 2020, and for |
each year thereafter, the Task Force shall submit a report of |
its findings and recommendations to the General Assembly. The |
report to the General Assembly shall be filed with the Clerk of |
the House of Representatives and the Secretary of the Senate in |
electronic form only, in the manner that the Clerk and the |
Secretary shall direct.
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Section 99. Effective date. This Act takes effect upon |
becoming law.
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