Public Act 101-0038
 
HB0001 EnrolledLRB101 04044 RJF 49052 b

    AN ACT concerning State government.
 
    Be it enacted by the People of the State of Illinois,
represented in the General Assembly:
 
    Section 1. Short title. This Act may be cited as the Task
Force on Infant and Maternal Mortality Among African Americans
Act.
 
    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:
        (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
    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.
        (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.
        (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
    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.
        (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
    in part by contributions from Merck for Mothers, a program
    of the pharmaceutical company, to the CDC Foundation.
        (5) The crisis of maternal death and near-death also
    persists for black women across class lines.
        (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.
        (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
    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.
        (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".
        (9) People of color, particularly black people, are
    treated differently the moment they enter the health care
    system. In 2002, the groundbreaking report "Unequal
    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
    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.
        (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.
 
    Section 10. Task Force on Infant and Maternal Mortality
Among African Americans.
    (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.
    (b) The Task Force shall consist of the following members:
        (1) the Director of Public Health, or his or her
    designee;
        (2) the Director of Healthcare and Family Services, or
    his or her designee;
        (3) the Secretary of Human Services, or his or her
    designee;
        (4) two medical providers who focus on infant and
    community health appointed by the Director of Public
    Health;
        (5) two obstetrics and gynecology (OB-GYN) specialists
    appointed by the Director of Public Health;
        (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;
        (7) two nurses appointed by the Director of Public
    Health;
        (8) two certified nurse midwives appointed by the
    Director of Public Health;
        (9) four community experts on maternal and infant
    health appointed by the Director of Public Health;
        (10) one representative from hospital leadership
    appointed by the Director of Public Health;
        (11) one representative from a health insurance
    company appointed by the Director of Public Health;
        (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;
        (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.
    (d) The members of the Task Force shall receive no
compensation for their services as members of the Task Force.
 
    Section 15. Meetings; duties.
    (a) The Task Force shall meet at least once per quarter
beginning as soon as practicable after the effective date of
this Act.
    (b) The Task Force shall:
        (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;
        (2) review comprehensive, nationwide data collection
    on maternal deaths and complications, including data
    disaggregated by race, geography, and socioeconomic
    status;
        (3) review the data sets that include information on
    social and environmental risk factors for women and infants
    of color;
        (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;
        (5) review research to identify best practices and
    effective interventions for improving the quality and
    safety of maternity care;
        (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;
        (7) review research to identify effective
    interventions for addressing social determinants of health
    disparities in maternal and infant health outcomes; and
        (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.
 
    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.
 
    Section 99. Effective date. This Act takes effect upon
becoming law.