Illinois General Assembly - Full Text of HB0001
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Full Text of HB0001  101st General Assembly




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1    AN ACT concerning State government.
2    Be it enacted by the People of the State of Illinois,
3represented in the General Assembly:
4    Section 1. Short title. This Act may be cited as the Task
5Force on Infant and Maternal Mortality Among African Americans
7    Section 5. Findings. Based upon an April 11, 2018 New York
8Times article on "Why America's Black Mothers and Babies Are in
9a Life-or-Death Crisis", the General Assembly finds the
11        (1) From 1915 through the 1990s, amid vast improvements
12    in hygiene, nutrition, living conditions and health care,
13    the number of babies of all races who died in the first
14    year of life dropped by over 90% — a decrease unparalleled
15    by reductions in other causes of death. But that national
16    decline in infant mortality has since slowed. In 1960, the
17    United States was ranked 12th among developed countries in
18    infant mortality. Since then, with its rate largely driven
19    by the deaths of black babies, the United States has fallen
20    behind and now ranks 32nd out of the 35 wealthiest nations.
21    Low birth weight is a key factor in infant death, and a new
22    report released in March by the Robert Wood Johnson
23    Foundation and the University of Wisconsin suggests that



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1    the number of low-birth-weight babies born in the United
2    States — also driven by the data for black babies — has
3    inched up for the first time in a decade.
4        (2) Black infants in America are now more than twice as
5    likely to die as white infants — 11.3 per 1,000 black
6    babies, compared with 4.9 per 1,000 white babies, according
7    to the most recent government data — a racial disparity
8    that is actually wider than in 1850, 15 years before the
9    end of slavery, when most black women were considered
10    chattel. In one year, that racial gap adds up to more than
11    4,000 lost black babies. Education and income offer little
12    protection. In fact, a black woman with an advanced degree
13    is more likely to lose her baby than a white woman with
14    less than an eighth-grade education.
15        (3) This tragedy of black infant mortality is
16    intimately intertwined with another tragedy: a crisis of
17    death and near death in black mothers themselves. The
18    United States is one of only 13 countries in the world
19    where the rate of maternal mortality — the death of a woman
20    related to pregnancy or childbirth up to a year after the
21    end of pregnancy — is now worse than it was 25 years ago.
22    Each year, an estimated 700 to 900 maternal deaths occur in
23    the United States. In addition, the Centers for Disease
24    Control and Prevention reports more than 50,000
25    potentially preventable near-deaths per year — a number
26    that rose nearly 200% from 1993 to 2014, the last year for



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1    which statistics are available. Black women are 3 to 4
2    times as likely to die from pregnancy-related causes as
3    their white counterparts, according to the Centers for
4    Disease Control and Prevention — a disproportionate rate
5    that is higher than that of Mexico, where nearly half the
6    population lives in poverty — and as with infants, the high
7    numbers for black women drive the national numbers.
8        (4) In her 2014 testimony before the United Nations
9    Committee on the Elimination of Racial Discrimination,
10    Monica Simpson, the Executive Director of SisterSong, the
11    country's largest organization dedicated to reproductive
12    justice for women of color, testified that the United
13    States, by failing to address the crisis in black maternal
14    mortality, was violating an international human rights
15    treaty. Following this testimony, the committee called on
16    the United States to "eliminate racial disparities in the
17    field of sexual and reproductive health and standardize the
18    data-collection system on maternal and infant deaths in all
19    states to effectively identify and address the causes of
20    disparities in maternal and infant-mortality rates". No
21    such measures have been forthcoming. Only about half the
22    states and a few cities maintain maternal-mortality review
23    boards to analyze individual cases of pregnancy-related
24    deaths. There has not been an official federal count of
25    deaths related to pregnancy in more than 10 years. An
26    effort to standardize the national count has been financed



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1    in part by contributions from Merck for Mothers, a program
2    of the pharmaceutical company, to the CDC Foundation.
3        (5) The crisis of maternal death and near-death also
4    persists for black women across class lines.
5        (6) The reasons for the black-white divide in both
6    infant and maternal mortality have been debated by
7    researchers and doctors for more than 2 decades. But
8    recently there has been growing acceptance of what has
9    largely been, for the medical establishment, a shocking
10    idea: for black women in America, an inescapable atmosphere
11    of societal and systemic racism can create a kind of toxic
12    physiological stress, resulting in conditions — including
13    hypertension and pre-eclampsia — that lead directly to
14    higher rates of infant and maternal death. And that
15    societal racism is further expressed in a pervasive,
16    longstanding racial bias in health care — including the
17    dismissal of legitimate concerns and symptoms — that can
18    help explain poor birth outcomes even in the case of black
19    women with the most advantages.
20        (7) Science has refuted the theory that high rates of
21    infant death in American black women has a genetic
22    component. A 1997 study published by 2 Chicago
23    neonatologists, Richard David and James Collins, in The New
24    England Journal of Medicine found that babies born to new
25    immigrants from impoverished West African nations weighed
26    more than their black American-born counterparts and were



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1    similar in size to white babies, and were more likely to be
2    born full term, which lowers the risk of death. In 2002,
3    the same researchers further found that the daughters of
4    African and Caribbean immigrants who grew up in the United
5    States went on to have babies who were smaller than their
6    mothers had been at birth, while the grandchildren of white
7    European women actually weighed more than their mothers had
8    at birth. It took just one generation for the American
9    black-white disparity to manifest.
10        (8) Though it seemed radical 25 years ago, few in the
11    field now dispute that the black-white disparity in the
12    deaths of babies is related not to the genetics of race but
13    to the lived experience of race in this country. In 2007,
14    Richard David and James Collins published an even more
15    thorough examination of race and infant mortality in the
16    American Journal of Public Health, again dispelling the
17    notion of some sort of gene that would predispose black
18    women to preterm birth or low birth weight. Based upon his
19    years of research and study on the subject, David, a
20    professor of pediatrics at the University of
21    Illinois-Chicago, stated that for "black women...something
22    about growing up in America seems to be bad for your baby's
23    birth weight".
24        (9) People of color, particularly black people, are
25    treated differently the moment they enter the health care
26    system. In 2002, the groundbreaking report "Unequal



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1    Treatment: Confronting Racial and Ethnic Disparities in
2    Health Care", published by a division of the National
3    Academy of Sciences, took an exhaustive plunge into 100
4    previous studies, careful to decouple class from race, by
5    comparing subjects with similar income and insurance
6    coverage. The researchers found that people of color were
7    less likely to be given appropriate medications for heart
8    disease, or to undergo coronary bypass surgery, and
9    received kidney dialysis and transplants less frequently
10    than white people, which resulted in higher death rates.
11    Black people were 3.6 times as likely as white people to
12    have their legs and feet amputated as a result of diabetes,
13    even when all other factors were equal. One study analyzed
14    in the report found that cesarean sections were 40% more
15    likely among black women compared with white women.
16        (10) In 2016, a study by researchers at the University
17    of Virginia examined why African-American patients receive
18    inadequate treatment for pain not only compared with white
19    patients but also relative to World Health Organization
20    guidelines. The study found that white medical students and
21    residents often believed incorrect and sometimes
22    "fantastical" biological fallacies about racial
23    differences in patients. For example, many thought,
24    falsely, that blacks have less-sensitive nerve endings
25    than whites, that black people's blood coagulates more
26    quickly and that black skin is thicker than white. For



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1    these assumptions, researchers blamed not individual
2    prejudice but deeply ingrained unconscious stereotypes
3    about people of color, as well as physicians' difficulty in
4    empathizing with patients whose experiences differ from
5    their own. In specific research regarding childbirth, the
6    Listening to Mothers Survey III found that one in five
7    black and Hispanic women reported poor treatment from
8    hospital staff because of race, ethnicity, cultural
9    background or language, compared with 8% of white mothers.
10        (11) Researchers have worked to connect the dots
11    between racial bias and unequal treatment in the health
12    care system and maternal and infant mortality; however,
13    based upon the preceding findings, it is clear that more
14    must be done, and the General Assembly finds that a Task
15    Force is necessary to work to establish best practices to
16    decrease infant and maternal mortality among African
17    Americans in Illinois.
18    Section 10. Task Force on Infant and Maternal Mortality
19Among African Americans.
20    (a) There is hereby created the Task Force on Infant and
21Maternal Mortality Among African Americans to work to establish
22best practices to decrease infant and maternal mortality among
23African Americans in Illinois.
24    (b) The Task Force shall consist of the following members:
25        (1) the Director of Public Health, or his or her



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1    designee;
2        (2) the Director of Healthcare and Family Services, or
3    his or her designee;
4        (3) the Secretary of Human Services, or his or her
5    designee;
6        (4) two medical providers who focus on infant and
7    community health appointed by the Director of Public
8    Health;
9        (5) two obstetrics and gynecology (OB-GYN) specialists
10    appointed by the Director of Public Health;
11        (6) two doulas appointed by the Director of Public
12    Health. For the purposes of this paragraph (6), "doula"
13    means a professional trained in childbirth who provides
14    emotional, physical, and educational support to a mother
15    who is expecting, is experiencing labor, or has recently
16    given birth;
17        (7) two nurses appointed by the Director of Public
18    Health;
19        (8) two certified nurse midwives appointed by the
20    Director of Public Health;
21        (9) four community experts on maternal and infant
22    health appointed by the Director of Public Health;
23        (10) one representative from hospital leadership
24    appointed by the Director of Public Health;
25        (11) one representative from a health insurance
26    company appointed by the Director of Public Health;



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1        (12) one African American woman of childbearing age who
2    has experienced a traumatic pregnancy, which may or may not
3    have included the loss of a child, appointed by the
4    Director of Public Health;
5        (13) one physician representing the Illinois Academy
6    of Family Physicians; and
7        (14) one physician representing the Illinois Chapter
8    of the American Academy of Pediatrics.
9    (c) The Task Force shall elect a chairperson from among its
10membership and any other officer it deems appropriate. The
11Department of Public Health shall provide technical support and
12assistance to the Task Force and shall be responsible for
13administering its operations and ensuring that the
14requirements of this Act are met.
15    (d) The members of the Task Force shall receive no
16compensation for their services as members of the Task Force.
17    Section 15. Meetings; duties.
18    (a) The Task Force shall meet at least once per quarter
19beginning as soon as practicable after the effective date of
20this Act.
21    (b) The Task Force shall:
22        (1) review research that substantiates the connections
23    between a mother's health before, during, and between
24    pregnancies, as well as that of her child across the life
25    course;



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1        (2) review comprehensive, nationwide data collection
2    on maternal deaths and complications, including data
3    disaggregated by race, geography, and socioeconomic
4    status;
5        (3) review the data sets that include information on
6    social and environmental risk factors for women and infants
7    of color;
8        (4) review better assessments and analysis on the
9    impact of overt and covert racism on toxic stress and
10    pregnancy-related outcomes for women and infants of color;
11        (5) review research to identify best practices and
12    effective interventions for improving the quality and
13    safety of maternity care;
14        (6) review research to identify best practices and
15    effective interventions, as well as health outcomes before
16    and during pregnancy, in order to address pre-disease
17    pathways of adverse maternal and infant health;
18        (7) review research to identify effective
19    interventions for addressing social determinants of health
20    disparities in maternal and infant health outcomes; and
21        (8) produce an annual report detailing the Task Force's
22    findings based upon its review of research conducted under
23    this Section, including specific recommendations, if any,
24    and any other information the Task Force may deem proper in
25    furtherance of its duties under this Act.



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1    Section 20. Report. Beginning December 1, 2020, and for
2each year thereafter, the Task Force shall submit a report of
3its findings and recommendations to the General Assembly. The
4report to the General Assembly shall be filed with the Clerk of
5the House of Representatives and the Secretary of the Senate in
6electronic form only, in the manner that the Clerk and the
7Secretary shall direct.
8    Section 99. Effective date. This Act takes effect upon
9becoming law.