I 113th CONGRESS 2d Session H. R. 4216 IN THE HOUSE OF REPRESENTATIVES March 12, 2014 Mr. Conyers (for himself and Ms. DeGette ) introduced the following bill; which was referred to the Committee on Energy and Commerce A BILL To amend title V of the Social Security Act to provide grants to States to establish State maternal mortality review committees on pregnancy-related deaths occurring within such States; to develop definitions of severe maternal morbidity and data collection protocols; and to eliminate disparities in maternal health outcomes.

1. Short title This Act may be cited as the Maternal Health Accountability Act of 2014 . 2. Findings; purposes (a) Findings Congress finds the following: (1) The aggregate pregnancy-related mortality ratio in the United States as measured by the Centers for Disease Control and Prevention Pregnancy Mortality Surveillance System was 14.5 for the 8-year period 1998 through 2005, higher than any other period in the previous 20 years. Although this increase may reflect changes in data collection methods by the States, this reported increase, along with no improvement in previous years remains a source of great concern for the Centers for Disease Control and Prevention, and registered nurses, health care providers, and patient advocates such as the Joint Commission, the American College of Obstetricians and Gynecologists, and Amnesty International. (2) The Centers for Disease Control and Prevention has found that maternal deaths should be investigated through State-based maternal death reviews and maternal quality collaboratives, as these entities are well-situated to identify deaths, review the factors associated with them, and take action with the findings in order to institute the systemic changes needed to decrease pregnancy-related and pregnancy-associated mortality. (3) Women of color and low-income women face added risks in terms of death, complications, and access to quality health care. African-American women are three to four times more likely to die of pregnancy-related complications than White women. In 2006 the Centers for Disease Control and Prevention reported that the maternal mortality ratio for non-Hispanic White women was 9.1 deaths per 100,000 births compared with 34.8 deaths per 100,000 births for non-Hispanic Black women. These rates and disparities have not improved in more than 20 years. (4) Healthy People 2010, a comprehensive, nationwide health promotion and disease prevention agenda launched by the Department of Health and Human Services, set a target goal of reducing maternal mortality in the United States to 4.3 deaths per 100,000 live births by 2010. In 2007, the national maternal mortality ratio was 12.7 deaths per 100,000 live births. (5) Severe complications that result in women nearly dying, known as a near miss or severe maternal morbidity has increased by 75 percent for delivery (based on data comparing 1998 through 1999) and 114 percent for postpartum hospitalizations (based on data comparing 2008 through 2009). Such data also estimates that severe morbidity affects 52,000 women a year and is expected to continue to increase. Moreover, there is no scientific consensus on uniform definitions of severe maternal morbidity and best practices for data collection, making it difficult to measure the full extent of severe morbidity and developing evidence-based interventions. (b) Purposes The purposes of this Act are the following: (1) To establish governmental accountability and a shared responsibility between States and the Federal Government to identify opportunities for improvement in quality of care and system changes, and to educate and inform health institutions and professionals, women, and families about preventing pregnancy-related deaths and complications and reducing disparities. (2) To develop a model for States to operate maternal mortality reviews and assess the various factors that may have contributed to maternal mortality, including quality of care, racial disparities, and systemic problems in the delivery of health care, and to develop appropriate interventions to reduce and prevent such deaths. 3. Uniform State maternal mortality review committees on pregnancy-related deaths (a) Condition of receipt of payments from allotment under Maternal and Child Health Service Block Grant Title V of the Social Security Act ( 42 U.S.C. 701 et seq. ) is amended by adding at the end the following new section: 514. Uniform State maternal mortality review committees on pregnancy-related deaths (a) Grants (1) In general Notwithstanding any other provision of this title, for each of fiscal years 2015 through 2021, in addition to payments from allotments for States under section 502 for such year, the Secretary shall, subject to paragraph (3) and in accordance with the criteria established under paragraph (2), award grants to States to— (A) carry out the activities described in subsection (b)(1); (B) establish a State maternal mortality review committee, in accordance with subsection (b)(2), to carry out the activities described in subsection (b)(2)(A), and to establish the processes described in subsection (b)(1); (C) ensure the State department of health carries out the applicable activities described in subsection (b)(3), with respect to pregnancy-related deaths occurring within the State during such fiscal year; (D) implement and use the comprehensive case abstraction form developed under subsection (c), in accordance with such subsection; (E) provide for public disclosure of information, in accordance with subsection (e); and (F) collect, analyze, and report to the Secretary cases of maternal morbidity, including reports of maternal morbidity data on admissions to an intensive care unit or the transfusion of more than three units of blood products. (2) Criteria The Secretary shall establish criteria for determining eligibility for and the amount of a grant awarded to a State under paragraph (1). Such criteria shall provide that in the case of a State that receives such a grant for a fiscal year and is determined by the Secretary to have not used such grant in accordance with this section, such State shall not be eligible for such a grant for any subsequent fiscal year. (3) Authorization of appropriations For purposes of carrying out the grant program under this section, including for administrative purposes, there is authorized to be appropriated $10,000,000 for each of fiscal years 2015 through 2021. (b) Pregnancy-Related death review (1) Review of pregnancy-related death and pregnancy-associated death cases For purposes of subsection (a), with respect to a State that receives a grant under subsection (a), the following shall apply: (A) Mandatory reporting of pregnancy-related deaths (i) In general The State shall, through the State maternal mortality review committee, develop a process, separate from any reporting process established by the State department of health prior to the date of the enactment of this section, that provides for mandatory and confidential case reporting by individuals and entities described in clause (ii) of pregnancy-related deaths to the State department of health. (ii) Individuals and Entities described Individuals and entities described in this clause include each of the following: (I) Health care providers. (II) Medical examiners. (III) Medical coroners. (IV) Hospitals. (V) Free-standing birth centers. (VI) Other health care facilities. (VII) Any other individuals responsible for completing death certificates. (VIII) Any other appropriate individuals or entities specified by the Secretary. (B) Voluntary reporting of pregnancy-related and pregnancy-associated deaths (i) The State shall, through the State maternal mortality review committee, develop a process for and encourage, separate from any reporting process established by the State department of health prior to the date of the enactment of this section, voluntary and confidential case reporting by individuals described in clause (ii) of pregnancy-associated deaths to the State department of health. (ii) The State shall, through the State maternal mortality review committee, develop a process for voluntary and confidential reporting by family members of the deceased and by other individuals on possible pregnancy-related and pregnancy-associated deaths to the State department of health. Such process shall include— (I) making publicly available on the Internet Web site of the State department of health a telephone number, Internet Web link, and email address for such reporting; and (II) publicizing to local professional organizations, community organizations, and social services agencies the availability of the telephone number, Internet Web link, and email address made available under subclause (I). (C) Development of case-finding The State, through the vital statistics unit of the State, shall annually identify pregnancy-related and pregnancy-associated deaths occurring in such State during the year involved by— (i) matching all death records, with respect to such year, for women of childbearing age to live birth certificates and infant death certificates to identify deaths of women that occurred during pregnancy and within one year after the end of a pregnancy; (ii) identifying deaths reported during such year as having an underlying or contributing cause of death related to pregnancy, regardless of the time that has passed between the end of the pregnancy and the death; (iii) collecting data from medical examiner and coroner reports; and (iv) any other methods the States may devise to identify maternal deaths, such as through review of a random sample of reported deaths of women of childbearing age to ascertain cases of pregnancy-related and pregnancy-associated deaths that are not discernable from a review of death certificates alone. When feasible and for purposes of effectively collecting and obtaining data on pregnancy-related and pregnancy-associated deaths, the State shall adopt the most recent standardized birth and death certificates, as issued by the National Center for Vital Health Statistics, including the recommended checkbox section for pregnancy on the death certificates. (D) Case investigation and development of case summaries Following receipt of reports by the State department of health pursuant to subparagraph (A) or (B) and collection by the vital statistics unit of the State of possible cases of pregnancy-related and pregnancy-associated deaths pursuant to subparagraph (C), the State, through the State maternal mortality review committee established under subsection (a), shall investigate each case, utilizing the case abstraction form described in subsection (c), and prepare de-identified case summaries, which shall be reviewed by the committee and included in applicable reports. For purposes of subsection (a), under the processes established under subparagraphs (A), (B), and (C), a State department of health or vital statistics unit of a State shall provide to the State maternal mortality review committee access to information collected pursuant to such subparagraphs as necessary to carry out this subparagraph. Data and information collected for the case summary and review are for purposes of public health activities, in accordance with HIPAA privacy and security law (as defined in section 3009(a)(2) of the Public Health Service Act). Such case investigations shall include data and information obtained through— (i) medical examiner and autopsy reports of the woman involved; (ii) medical records of the woman, including such records related to health care prior to pregnancy, prenatal and postnatal care, labor and delivery care, emergency room care, hospital discharge records, and any care delivered up until the time of death of the woman for purposes of public health activities, in accordance with HIPAA privacy and security law (as defined in section 3009(a)(2) of the Public Health Service Act); (iii) oral and written interviews of individuals directly involved in the maternal care of the woman during and immediately following the pregnancy of the woman, including health care, mental health, and social service providers, as applicable; (iv) optional oral or written interviews of the family of the woman; (v) socioeconomic and other relevant background information about the woman; (vi) information collected in subparagraph (C)(i); and (vii) other information on the cause of death of the woman, such as social services and child welfare reports. (2) State maternal mortality review committees (A) Duties (i) Required committee activities For purposes of subsection (a), a maternal mortality review committee established by a State pursuant to a grant under such subsection shall carry out the following pregnancy-related death and pregnancy-associated death review activities and shall include all information relevant to the death involved on the case abstraction form developed under subsection (d): (I) With respect to a case of pregnancy-related or pregnancy-associated death of a woman, review the case summaries prepared under subparagraphs (A), (B), (C), and (D) of paragraph (1). (II) Review aggregate statistical reports developed by the vital statistics unit of the State under paragraph (1)(C) regarding pregnancy-related and pregnancy-associated deaths to identify trends, patterns, and disparities in adverse outcomes and address medical, non-medical, and system-related factors that may have contributed to such pregnancy-related and pregnancy-associated deaths and disparities. (III) Develop recommendations, based on the review of the case summaries under paragraph (1)(D) and aggregate statistical reports under subclause (II), to improve maternal care, social and health services, and public health policy and institutions, including with respect to improving access to maternal care, improving the availability of social services, and eliminating disparities in maternal care and outcomes. (ii) Optional committee activities For purposes of subsection (a), a maternal mortality review committee established by a State under such subsection may present findings and recommendations regarding a specific case or set of circumstances directly to a health care facility or its local or State professional organization for the purpose of instituting policy changes, educational activities, or otherwise improving the quality of care provided by the facilities. (B) Composition of maternal mortality review committees (i) In General Each State maternal mortality review committee established pursuant to a grant under subsection (a) shall be multi-disciplinary, consisting of health care and social service providers, public health officials, other persons with professional expertise on maternal health and mortality, and patient and community advocates who represent those communities within such State that are the most affected by maternal mortality. Membership on such a committee of a State shall be reviewed annually by the State department of health to ensure that membership representation requirements are being fulfilled in accordance with this paragraph. (ii) Required membership Each such review committee shall include— (I) representatives from medical specialities providing care to pregnant and postpartum patients, including obstetricians (including generalists and maternal fetal medicine specialists), and family practice physicians; (II) certified nurse midwives, certified midwives, and advanced practice nurses; (III) hospital-based registered nurses; (IV) representatives of the State department of health maternal and child health department; (V) social service providers or social workers; (VI) the chief medical examiners or designees; (VII) facility representatives, such as from hospitals or free-standing birth centers; and (VIII) community or patient advocates who represent those communities within the State that are the most affected by maternal mortality. (iii) Additional members Each such review committee may also include representatives from other relevant academic, health, social service, or policy professions, or community organizations, on an ongoing basis, or as needed, as determined beneficial by the review committee, including— (I) anesthesiologists; (II) emergency physicians; (III) pathologists; (IV) epidemiologists or biostatisticians; (V) intensivists; (VI) vital statistics officers; (VII) nutritionists; (VIII) mental health professionals; (IX) substance abuse treatment specialists; (X) representatives of relevant advocacy groups; (XI) academics; (XII) representatives of beneficiaries of the State plan under the Medicaid program under title XIX; (XIII) paramedics; (XIV) lawyers; (XV) risk management specialists; (XVI) representatives of the departments of health or public health of major cities in the State involved; and (XVII) policy makers. (iv) Diverse community membership The composition of such a committee, with respect to a State, shall include— (I) representatives from diverse communities, particularly those communities within such State most severely affected by pregnancy-related deaths or pregnancy-associated deaths and by a lack of access to relevant maternal care services, from community maternal child health organizations, and from minority advocacy groups; (II) members, including health care providers, from different geographic regions in the State, including any rural, urban, and tribal areas; and (III) health care and social service providers who work in communities that are diverse with regard to race, ethnicity, immigration status, Indigenous status, and English proficiency. (v) Maternal mortality review staff Staff of each such review committee shall include— (I) vital health statisticians, maternal child health statisticians, or epidemiologists; (II) a coordinator of the State maternal mortality review committee, to be designated by the State; and (III) administrative staff. (C) Option for States to form regional maternal mortality reviews States with a low rate of occurrence of pregnancy-associated or pregnancy-related deaths may choose to partner with one or more neighboring States to fulfill the activities described in paragraph (1)(C). In such a case, with respect to States in such a partnership, any requirement under this section relating to the reporting of information related to such activities shall be deemed to be fulfilled by each such State if a single such report is submitted for the partnership. (3) State Department of Health Activities For purposes of subsection (a), a State department of health of a State receiving a grant under such subsection shall— (A) in consultation with the maternal mortality review committee of the State and in conjunction with relevant professional organizations, develop a plan for ongoing health care provider education, based on the findings and recommendations of the committee, in order to improve the quality of maternal care; and (B) take steps to widely disseminate the findings and recommendations of the State maternal mortality review committees of the State and to implement the recommendations of such committee. (c) Case abstraction form (1) Development The Director of the Centers for Disease Control and Prevention shall develop a uniform, comprehensive case abstraction form and make such form available to States for State maternal mortality review committees for use by such committees in order to— (A) ensure that the cases and information collected and reviewed by such committees can be pooled for review by the Department of Health and Human Services and its agencies; and (B) preserve the uniformity of the information and its use for Federal public health purposes. (2) Permissible State modification Each State may modify the form developed under paragraph (1) for implementation and use by such State or by the State maternal mortality review committee of such State by including on such form additional information to be collected, but may not alter the standard questions on such form, in order to ensure that the information can be collected and reviewed centrally at the Federal level. (d) Treatment as public health authority for purposes of HIPAA For purposes of applying HIPAA privacy and security law (as defined in section 3009(a)(2) of the Public Health Service Act), a State maternal mortality review committee of a State established pursuant to this section to carry out activities described in subsection (b)(2)(A) shall be deemed to be a public health authority described in section 164.501 (and referenced in section 164.512(b)(1)(i)) of title 45, Code of Federal Regulations (or any successor regulation), carrying out public health activities and purposes described in such section 164.512(b)(1)(i) (or any such successor regulation). (e) Public disclosure of information (1) In general For fiscal year 2015 or a subsequent fiscal year, each State receiving a grant under this section for such year shall, subject to paragraph (3), provide for the public disclosure, and submission to the information clearinghouse established under paragraph (2), of the information included in the report of the State under section 506(a)(2)(F) for such year (relating to the findings for such year of the State maternal mortality review committee established by the State under this section). (2) Information clearinghouse The Secretary of Health and Human Services shall establish an information clearinghouse, that shall be administered by the Director of the Centers for Disease Control and Prevention, that will maintain findings and recommendations submitted pursuant to paragraph (1) and provide such findings and recommendations for public review and research purposes by State health departments, maternal mortality review committees, and health providers and institutions. (3) Confidentiality of information In no case shall any individually identifiable health information be provided to the public, or submitted to the information clearinghouse, under paragraph (1). (f) Confidentiality of review committee proceedings (1) In general All proceedings and activities of a State maternal mortality review committee under this section, opinions of members of such a committee formed as a result of such proceedings and activities, and records obtained, created, or maintained pursuant to this section, including records of interviews, written reports, and statements procured by the Department of Health and Human Services or by any other person, agency, or organization acting jointly with the Department, in connection with morbidity and mortality reviews under this section, shall be confidential, and not subject to discovery, subpoena, or introduction into evidence in any civil, criminal, legislative, or other proceeding. Such records shall not be open to public inspection. (2) Testimony of members of committee (A) In general Members of a State maternal mortality review committee under this section may not be questioned in any civil, criminal, legislative, or other proceeding regarding information presented in, or opinions formed as a result of, a meeting or communication of the committee. (B) Clarification Nothing in this subsection shall be construed to prevent a member of such a committee from testifying regarding information that was obtained independent of such member’s participation on the committee, or that is public information. (3) Availability of information for research purposes Nothing in this subsection shall prohibit the publishing by such a committee or the Department of Health and Human Services of statistical compilations and research reports that— (A) are based on confidential information, relating to morbidity and mortality review; and (B) do not contain identifying information or any other information that could be used to ultimately identify the individuals concerned. (g) Definitions For purposes of this section: (1) The term pregnancy-associated death means the death of a woman while pregnant or during the one-year period following the date of the end of pregnancy, irrespective of the cause of such death. (2) The term pregnancy-related death means the death of a woman while pregnant or during the one-year period following the date of the end of pregnancy, irrespective of the duration or site of the pregnancy, from any cause related to or aggravated by the pregnancy or its management, but not from any accidental or incidental cause. (3) The term woman of childbearing age means a woman who is at least 10 years of age and not more than 54 years of age. . (b) Inclusion of findings of review committees in required reports (1) State triennial reports Paragraph (2) of section 506(a) of such Act ( 42 U.S.C. 706(a) ) is amended by inserting after subparagraph (E) the following new subparagraph: (F) In the case of a State receiving a grant under section 514, beginning for the first fiscal year beginning after 3 years after the date of establishment of the State maternal mortality review committee established by the State pursuant to such grant and once every 3 years thereafter, information containing the findings and recommendations of such committee and information on the implementation of such recommendations during the period involved. . (2) Annual reports to Congress Paragraph (3) of such section is amended— (A) in subparagraph (D), at the end, by striking and ; (B) in subparagraph (E), at the end, by striking the period and inserting ; and ; and (C) by adding at the end the following new subparagraph: (F) For fiscal year 2015 and each subsequent fiscal year, taking into account the findings, recommendations, and implementation information submitted by States pursuant to paragraph (2)(F), on the status of pregnancy-related deaths and pregnancy-associated deaths in the United States and including recommendations on methods to prevent such deaths in the United States. . 4. NIH workshop and research plan development on severe maternal morbidity (a) Workshop The Secretary of Health and Human Services, acting through the Director of NIH and in consultation with the Administrator of the Health Resources and Services Administration, the Director of the Centers for Disease Control and Prevention, the heads of other Federal agencies that administer Federal health programs, and relevant national professional organizations dealing with maternal morbidity, shall organize a national workshop to identify definitions for severe maternal morbidity and make recommendations for a research plan to identify and monitor severe maternal morbidity in the United States. (b) Research plan and data collection protocols The Secretary, taking into account the findings of the workshop under paragraph (1), shall develop uniform definitions of severe maternal morbidity, a research plan on severe maternal morbidity, and possible data collection protocols to assist States in identifying and monitoring cases of severe maternal morbidity and to develop recommendations on addressing such cases. (c) Report Not later than 2 years after the date of enactment of this Act, the Secretary shall prepare and submit to the appropriate committees of Congress a report concerning the definitions and research plan developed under this section. (d) Authorization of appropriations There is authorized to be appropriated for fiscal year 2015— (1) $50,000 to carry out subsection (a); and (2) $100,000 to carry out subsection (b). 5. Eliminating disparities in maternity health outcomes Part B of title III of the Public Health Service Act is amended by inserting after section 317T of such Act ( 42 U.S.C. 247b–22 ) the following new section: 317U. Eliminating disparities in maternity health outcomes (a) In general The Secretary shall, in consultation with relevant national stakeholder organizations, such as national medical specialty organizations, national maternal child health organizations, and national health disparity organizations, carry out the following activities to eliminate disparities in maternal health outcomes: (1) Conduct research into the determinants and the distribution of disparities in maternal care, health risks, and health outcomes, and improve the capacity of the performance measurement infrastructure to measure such disparities. (2) Expand access to services that have been demonstrated to improve the quality and outcomes of maternity care for vulnerable populations. (3) Establish a demonstration project to compare the effectiveness of interventions to reduce disparities in maternity services and outcomes, and implement and assessing effective interventions. (b) Scope and selection of States for demonstration project The demonstration project under subsection (a)(3) shall be conducted in no more than 8 States, which shall be selected by the Secretary based on— (1) applications submitted by States, which specify which regions and populations the State involved will serve under the demonstration project; (2) criteria designed by the Secretary to ensure that, as a whole, the demonstration project is, to the greatest extent possible, representative of the demographic and geographic composition of communities most affected by disparities; (3) criteria designed by the Secretary to ensure that a variety of type of models are tested through the demonstration project and that such models include interventions that have an existing evidence base for effectiveness; and (4) criteria designed by the Secretary to assure that the demonstration projects and models will be carried out in consultation with local and regional provider organizations, such as community health centers, hospital systems, and medical societies representing providers of maternity services. (c) Duration of demonstration project The demonstration project under subsection (a)(3) shall begin on January 1, 2015, and end on December 31, 2019. (d) Grants for evaluation and monitoring The Secretary may make grants to States and health care providers participating in the demonstration project under subsection (a)(3) for the purpose of collecting data necessary for the evaluation and monitoring of such project. (e) Reports (1) State reports Each State that participates in the demonstration project under subsection (a)(3) shall report to the Secretary, in a time, form, and manner specified by the Secretary, the data necessary to— (A) monitor the— (i) outcomes of the project; (ii) costs of the project; and (iii) quality of maternity care provided under the project; and (B) evaluate the rationale for the selection of the items and services included in any bundled payment made by the State under the project. (2) Final report Not later than December 31, 2020, the Secretary shall submit to Congress a report on the results of the demonstration project under subsection (a)(3). .