Human Rights-Based Approach to Maternal Mortality in the US

1. Human Rights-Based Approach to Maternal Mortality in the US International Roundtable on Maternal Mortality, Human Rights, and Accountability 2 September 2010 Rachel Ward Amnesty International USA

2. Amnesty International’s Demand Dignity Campaign: Maternal Mortality • Amnesty International’s work on Maternal Mortality is part of our global Demand Dignity Campaign • Around the world a woman dies every minute from maternal mortality • The vast majority of these deaths are preventable, which is what makes maternal mortality a human rights issue

3. Value of the Human Rights Framework • Human rights framework is a practical tool to monitor and hold governments accountable on maternal mortality and morbidity • We used the human rights framework to conduct research in an effort to help identify solutions to the problem that exists in the US

4. Overview of the problem in the US Women in the US are more likely to die of complications resulting from pregnancy or childbirth than women in 40 other countries. • Two to three women die each day • 34,000 experience “near-misses” (one every 15 minutes) • Well over 1 million women suffer complications or adverse health effects • Maternal mortality ratios have not improved in over 20 years. • In fact numbers of reported deaths are rising

5. INEQUITIES IN MATERNAL HEALTH Women of color, low income women, Indigenous women, immigrant women and women with limited English all face additional risks. • Black women are nearly 4 x more likely to die than white women • In high risk pregnancies, black women are 5 ½ x more likely to die • Risk is not uniform across the 50 states • Women in DC are almost 30 timesmore likely to die than in Maine

6. BARRIERS TO CARE Nearly half of maternal deaths could have been prevented withbetter access to good quality maternal health care. Government is failing to address numerous barriers and obstacles that stand in the way of women getting the care that they need.

7. SYSTEMIC BARRIERS TO MATERNAL CARE • Access: Financial, bureaucratic, and language barriers • Availability: Provider shortages, inadequate staffing • Acceptability: Lack of culturally appropriate care • Quality: Inadequate implementation of guidelines & protocols • Discrimination • Lack of information and participation in care • Lack of accountability and oversight

8. ACCESS: GOING INTO PREGNANCY IN ILL HEALTH • 1 in 5 women of reproductive age have no health insurance (13 M.) • Women of color account for 1/3 of all women, but 1/2 of uninsured • Consequences: A lack of access to health care prior to pregnancy, can lead to unmanaged health conditions that complicate pregnancy

9. THE IMPORTANCE OF PRE-NATAL CARE 21 states, do not offer “presumptive eligibility”amechanism for pregnant women to get temporary access to Medicaid, before their paperwork is completed. • Native American women are 3 ½ times more likely and African American and Latina women are 2 ½ times as likely to receive late or no prenatal care as white women and • Women with no pre-natal care are three to four times more likely to die

10. TRINA’S STORY This square in the Safe Motherhood Quilt was made in memory of Trina Bachtel, who died after giving birth to a stillborn baby in August 2007. She did not immediately seek care at a local clinic because had previously incurred a medical debt there, and she believed she would be required to pay a $100 deposit to get care.

11. AVAILABILITY OF HEALTH CARE PROVIDERS Shortages of health professionals including maternal health care providers: • 65 million people live in medically underserved areas – primarily in inner city and rural areas • Only about 20% of these areas are served by Federally Qualified Health Centers (FQHCs), also known as Community Health Centers • Relatively small number of obstetricians (9.6 per 1,000 births) and the lowest number of midwives to births (.4 per 1,000), among industrialized countries. • Medicaid: There are particular shortages in providers who accept Medicaid, even more severe among specialists

12. TRUDY’S STORY Trudy LaGrew, a Native American woman living on the Red Cliff reservation in Wisconsin, died of an undiagnosed heart condition following the birth of her son. Although her pregnancy was high risk, she was unable to seek care from a specialist which would have been a 2 hour drive each way. .

13. TINA’S STORY Tina Long was eight and a half months pregnant when she was admitted to a hospital in Honolulu, Hawaii. Tina showed symptoms of pre-eclampsia, a potentially fatal condition. She was left alone in a room while her mother was asked to get medication from the pharmacy, because no staff were available to do so. When a nurse checked in with her 90 minutes later via a loudspeaker, she was discovered to be unresponsive. Tina and her baby were pronounced dead.

14. QUALITY: LACK OF EVIDENCE BASED CARE • The five leading potentially fatal complications of pregnancy and childbirth together account for nearly 3 out of 4 of maternal deaths • Embolism (blood clots) • Hemorrhage (severe blood loss) • Eclampsia/pre-eclampsia (pregnancy disorders associated with excessively high blood pressure) • Infection • Cardiomyopathy (heart muscle disease) • There is a need for implementation of guidelines on preventing, recognizing, and treating these conditions, so ALL women receive quality, evidence based care.

15. VALERIE’S STORY Valerie Scythes died in 2007 soon after giving birth by c-section to her daughter Isabella Rose. Despite her heightened risk of developing a blood clot, she was not given preventative care.

16. LINDA’S STORY Linda Coale died of a blood clot a week after giving birth to her son, Ben, by c-section. The infant welcome packet included extensive information about acclimatizing pets to a new baby, but had failed to adequately alert her to warning signs of complications, despite the heightened risk due to her surgery.

17. CESAREAN DELIVERIES • Life saving intervention • The US c-section rate is 32% • WHO recommendation of range between 5 - 15% • African American women have the highest rates of c-sections • A woman’s risk of death is over three times higher with c-sections, and c-sections carry a greater risk of a number of complications • Some of the increase in “near misses” is also associated with rising c-section rates

18. TAMEKA’S STORY Tameka McFarquhar bled to death alone in her apartment in Watertown, New York. She was discharged a day after giving birth to her daughter. Family members became alarmed when they could not reach her, but by the time they could access her apartment, they found her and her baby already dead. Tameka’s death may have been prevented with a post-partum home visit. Postpartum home visits

19. LACK OF FAMILY PLANNING Many women lack access to information about family planning and affordable contraceptive services. • About half of all pregnancies in the US are unplanned. • Women with unintended pregnancies are more likely to • develop complications and face worse outcomes for themselves and their babies • start prenatal care late and receive inadequate prenatal care. • Women are 2.5 times more likely to die if they become pregnant again within 6 months of giving birth

20. LACK OF OVERSIGHT & ACCOUNTABILITY There is no nationwide requirement to separately report maternal deaths 29 states and theDistrict of Columbia have no review process at all

21. ACCOUNTABILITY – Amnesty International “Who owns responsibility for [not implementing best practices]? The short answer is: ‘Everybody and nobody.’” - US Health Official • To reverse these trends Amnesty is calling on the government to ensure that all women have access to timely and quality maternal health care before, during and after pregnancy • After 20 years of failing to improve matters, the US government needs to commit to implementing a robust and systematic response to the issue of maternal health in the USA, using input from multiple stakeholders.

22. NATIONAL SOLUTIONS We are calling on the US government to set up a single office within the Department of Health and Human Services to: • Expand comprehensive data collection regarding deaths, complications, and performance measures & nationwide review of mortality and severe morbidity • Ensure all women have access to pre-natal care and home visits after birth • Develop and put in place evidence-based guidelines to prevent, recognize and respond to leading complications that cause maternal deaths • Prioritize eliminating disparities, including by vigorously enforcing federal anti-discrimination laws

23. STATE-LEVEL SOLUTIONS • Instituting Maternal Mortality Review Boards to investigate maternal deaths and inequities and implement changes to improve care • Ensuring presumptive eligibility for Medicaid for pregnant women in all states

24. QUESTIONS? For more information, visit www.amnestyusa.org

25. Potential Federal Legislation – US Focus MOMs For the 21st Century Act • Interagency coordinating committee in HHS • Expanding evidence-based care • Measuring and reducing shortages of maternal care providers • Improving workforce diversity Additional Legislation Planned for Introduction • Medicaid quality measures & reporting • Payment reform to improve quality of the experience of care and outcomes • Maternal Mortality Review Board legislation

26. Potential Federal Legislation – Global The Global MOMS Act (H.R.5268) will support activities that help expand access to better quality maternal health services, remove barriers to such services, and ensure that they meet international human rights standards. The Act includes assistance for: • the development of a strategy as part of the Global Health Initiative to reduce mortality and improve maternal and newborn health; • improved coordination among U.S. government agencies and existing programs that are currently working to reduce maternal and newborn mortality; • authorization of assistance in proven interventions including family planning, access to skilled care at birth and training professionals in emergency obstetric care.

27. Impact of Health Care Reform • Although health care reform is an important step to increasing women’s access to maternal care, the proposed legislation won’t solve the maternal health crisis. • Since reform is primarily focused on health care coverage and reducing health care costs, it would leave largely unaddressed the issues of: • Disparities • Quality of maternal care • Accountability

28. Positive Impact of Health Care Reform • Access – 32 million will gain coverage, including • 4.5 million women will have access prior to pregnancy • Availability – Funding for community health centers in shortage areas will be doubled • Acceptability – Programs to promote training of a diverse workforce and promote cultural competence training of health care professionals • Quality – Measuring and reporting on quality of adult health care covered by Medicaid • 42% of births in the US covered by Medicaid • Reduces barriers to accessing midwives, birth centers, home health care

29. Gaps Remaining Following Reform Health care reform does not adequately address accountability, disparities, or quality of maternal care. • Access – 23 million expected to remain uninsured • Including (but not limited to) undocumented and recent immigrants • Availability – 60% of medically underserved areas remain without services • Acceptability – Unacceptable treatment of women and marginalized groups will require far more concerted attention • Insufficient informed consent and participation in care decisions • Quality – No national guidelines for evidence-based maternal care or to prevent, recognize and treat leading causes of maternal death.

30. Disparities Persist in All Countries • Peru - poor, rural, and indigenous women face widespread systemic discrimination including language barriers, a severe shortage of accessible clinics, a lack of information and culturally unacceptable care. • United Kingdom – • Black African women, including asylum seekers and newly arrived refugees have a mortality rate nearly six times higher than White women. To a lesser extent, Black Caribbean and Middle Eastern women also had a significantly higher mortality rate.