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1
�Infertility
and
National Health Care Reform:
A Briefing Paper
�This paper was written as a collaborative effon
by RESOLVE, Inc. and The American Fertility Society.
RESOLVE is a national nonprofit organization whose mission is to
provide timely, compassionate support and information to people
who are experiencing infertility and to increase awareness of
infertility issues through advocacy and public education.
The American Fertility Society is a national medical organization
whose mission is to promote excellence in all aspects of
reproductive medicine through education and research. Its 11,500
members specialize in reproductive medicine and are dedicated to
enhancing the reproductive health care of their patients.
For further information, please contact:
RESOLVE
1310 Broadway
Somerville, Massachusetts 02144-1731
1-617-623-1156
The American Fertility Society
Office of Government Relations
409 12th Street, SW
Washington, D.C. 20024
1-202-863-2576
January 1993
�The desire to bear children and to parent is the most fundamental aspect of human life and the foundation of society.
Yet, for as many as 2.3 million couples in the United States
today, this desire cannot be met because they suffer from
the disease of infertility. For these couples infertility is more
than simply an illness: it is a devastating life crisis which can
impact negatively the couple's general health, marriage,
extended family relationships, job performance and social
interactions. Added to the emotional and physical toll
exacted by infertility is the financial burden carried by
couples seeking treatment.
1
Infertility is an illness that interferes with
the most basic of human desires: the
desire to parent Yet infertility has been
largely ignored by health care
policymakers. This document seeks to
join infertility to the national debate on
health care reform.
While public awareness of infertility has increased in the last decade,
public policymakers have been slow to recognize infertility as a legitimate medical problem. Within the current debate on health care reform
at both the state and national level the trend of overlooking infertility
continues. The goal of this document is to provide an understanding of
the issues surrounding infertility, and to justify the inclusion of infertility
services as a part of reproductive health care in reform proposals
designed to increase access to health care.
The Definition of Infertility,
and Its Scope and Impact
Infertility is recognized by medical
experts as a serious disease that affects
as many as 4.9 million people in the
United States today.
Infertility is defined as the inability to conceive after one year
of intercourse without contraception. This definition may
also include the inability of a woman to carry a pregnancy to
a live birth. Both the American Fertility Society (AFS) and
the American College of Obstetricians and Gynecologists
(ACOG) recognize infertility as a disease. According to a policy
statement issued by the ACOG Gynecologic Practice Committee in
1992, "Infertility is a disease resulting in the abnormal function of the
reproductive system. ' ' In 1990, the National Center for Health Statistics (NCHS) reported that infertility affects 2.3 million couples, or 4.9
million people, in the United States . Thisfigurerepresents 8% of the
population, or 1 couple in 12.
1
2
3
4
The incidence of infertility has remained relatively constant
An identifiable medical cause of infertilbetween 1982, when data were first collected, and 1988. Yet,
ity can be found in roughly 80% of
while the percentage of couples, as a portion of the general
infertility cases with pregnancy possible
population, who are affected by infertility was the same in
in about half of those couples pursuing
1982 and 1988, the actual number of infertile couples has
treatment
increased due to an increase in the number of women of
childbearing age. For example, the number of childless
women 35 to 44 years of age with an impaired ability to have children
increased by 37% between 1982 and 1988, from 454,000 to 620,000.
6
5
7
Infertility affects both men and women almost equally. When one or
more problems are identified, the disease can be traced to medical
problems in the female roughly 1/3 of the time. In another 1/3 of
�Female
Male
• problems with ovulation
• infection
• tubal damage from infection and
ectopic pregnancy
• endometriosis
• congenital abnormalities
• hormonal imbalances
• immunologic infertility
• sexual dysfunction
• iatrogenically-induced conditions
caused by DES (diethylstilbestrol)
• tumors and/or cysts
• problems with sperm production
• varicocele (varicose
vein in the testicle)
• infection
• congenital abnormalities
• hormonal imbalances
• immunologic infertility
• sexual dysfunction
• iatrogenically-induced conditions
caused by DES (diethylstilbestrol)
• physical or environmental trauma
For theremaining1/3 of infertile couples the causes of the disease are a
combination of problems in both partners, or, in about 20% of cases, are
unexplained. Unexplained infertility occurs when a comprehensive
evaluation of an infertile couple fails to identify an etiology.
9
The NCHS reported that 1.3 million women, or 2% of all women of reproductive age in the United States, had one or more visits for infertility
treatment in 1988. During the last decade, health care providers have
made great strides in the ability to diagnose and treat infertility. In the
course of an infertility workup, a medical history and exam are performed
on both partners. The diagnosis of infertility mayrequiresome or all of the
following tests:
10
Female
Male
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
monitoring of basal body temperature
post-coital test
hysterosalpingogram
hysteroscopy
endometrial biopsy
blood hormone analysis
ultrasound
cervical antibody test
serum antibody test
mycoplasma and chlamydia cultures
laparoscopy
semen analysis
post-coital test
sperm penetration assay
sperm antibody test
serum antibody test
blood hormone analysis
vasogram
testicular biopsy
After the cause(s) of infertility have been identified, treatment options
may include one or more of the following:
Female
Male
• drug therapy to induce ovulation
• antibiotic therapy
• microsurgery to repair fallopian
tubes
• laparoscopic surgery
• hysteroscopic surgery
• fibroid surgery
• surgery to treat endometriosis
• drug therapy to treat endometriosis
• therapy for immunologic infertility
• antibiotic therapy
• varicocele surgery
• microsurgery to assist
sperm flow
• hormonal therapy
• therapy for immunologic
infertility
Couple
• husband or donor insemination
• intrauterine insemination
• assisted reproductive technologies
�(IVF), gamete intrafallopian transfer (GIFT) and zygote intrafallopian
transfer (ZIFT). These medical procedures require the use of
a reproductive technology laboratory to process human
Fewer than 2% of the 1.3 million women
sperm and eggs. Both the ACOG and the AFS consider
who sought treatment for infertility in
these procedures to be non-experimental. Although these
1988 required the most advanced
technologies receive the most publicity because of their
medical procedures. The majority of
"high tech" properties, in reality, "with few exceptions, ART
infertile couples require relatiuely lowrepresents methods of therapy for various causes of infertilcost, conuentional methods of treatment
ity only after failure of more conventional modalities or in
situations where no conventional treatments exist." The
Centers for Disease Control estimates that only about 1.6% of the 1.3
million infertile women who seek treatment for infertility undergo the ART
procedures.
11
12
13
InfertQity exacts an enormous toll on both the affected individual, and
on society. Couples in their most active and productive years (between
ages 20 and 45) are distracted by the physical, financial and emotional
hardships of this disease. According to Women and
Depression: Risk Factors and Treatment Issues, the final report of
the American Psychological Association's National Task Force on
Women and Depression, infertility was a major risk factor
for depression, with 40% of women in one study reporting
that their inability to conceive was the "most upsetting
"Infertility is a crisis of the deepest
experience of their lives".
kind. It threatens euery aspect of a
person's life - one's sense of self, one's
Infertile couples experience depression, anger, loss of dreams for the future, one's relationcontrol and guilt. As described by the AFS, reactions of a
ship with others. Few crises are as
couple upon learning of their infertility "typically follow the
challenging and overwhelming. Yet,
experience of a loss" , and the psychological stages that
most of the attention is focused on the
the couple subsequendy pass through are the same as those
physical aspects of infertility. The
for an individual facing death. Life for the infertile couple
emotional ones often go ignored and
must be rearranged around a schedule of often humiliating
untreated. As a result most people
and painful medical treatments whose timing is dictated by
suffer intensely and alone."
a monthly cycle. Moreover, infertility is a private and
embarrassing disease that is not shared easily with friends
or even family, which compounds the sense of grief and loss.
14
15
16
17
The Cost of Infertility Treatment and
Current Levels of Insurance Coverage
The Office of Technology Assessment (OTA) of the U.S.
Congress estimated that $1 billion was spent on infertility
treatment in the United States in 1987. These expenditures constitute only a tiny fraction - roughly 0.1% - of the
total U.S. healthcare budget. Of the total expenditures
for infertility in 1987 approximately 7% was spent on the
ART procedure IVF.
18
19
Only one tenth of one percent of the total
U.S. healthcare budget is spent on
infertility services, and the assisted
reproductive technologies account for
roughly three hundredths of a percent of
the cost of health care in the U.S.
20
For the individual couple, costs vary with the diagnosis, and with the
treatments pursued, and may be minimal or substantial. Diagnostic
�to $12,000, and treatment with one of the ART procedures
rangesfrom$4000 to $10,000 per attempt.
Insurance coverage for infertility
hbtoncally has been arbitrary and
inconsistent, with insurers calling
infertility "elective" and "a life-style choice".
Infertile couples pay insurance premiums to
cover benefits for the fertile couples around
them, yet have been forced to shoulder most
of their own treatment costs alone.
21
Insurance coverage for the diagnosis and treatment of
infertility under the current system is often arbitrary and
inconsistent. Coverage varies from policy to policy with
some policies covering many aspects of the disease and
others covering none at all. Insurers traditionally have been
reluctant to cover infertility for a number of reasons. Coverage isfrequentlyexcluded because infertility is not viewed as a medical
problem or considered life-threatening. Infertility has also been referred
to by the insurance industry as an "elective condition" and a "life-style
choice".
22
Those treatments whose sole purpose is to result in pregnancy, such as
donor and husband insemination and ART, without correcting an
underlying medical condition are those most often excluded from
insurance coverage. The way that infertility is defined and the way that
claims are presented often affect a patient's ability to receive coverage.
Insurance companies may not recognize infertility, per se, but would
provide coverage, for example, to diagnose and treat
endometriosis.
Insurance coverage for maternity services
is taken for granted by most Americans,
Problems with insurance coverage have lead those with this
whether that coverage is provided for one
disease to work towards gaining passage of state laws
child or for many. But insurers have been
requiring that infertility services be covered by insurance
setting public policy on family size for the
policies. Largely through the grassroots efforts of RESOLVE
infertile, by denying coverage for many
volunteers, supported by the American Fertility Society,
treatments that would enable infertile
laws have been enacted in ten states that require infertility
couples to conceive.
insurance coverage. These ten states are:
•
•
•
•
•
Arkansas
California
Connecticut
Hawaii
Illinois
•
•
•
•
•
Maryland
Massachusetts
New York
Rhode Island
Texas
These laws vary widely,fromrequiring insurers to provide
100% coverage of the diagnosis and treatment of infertility
Fueled by the belief that infertility
including ART procedures, to requiring insurers only to offer
insurance coverage is a right, infertile
coverage, which the employer has the option to purchase.
people in ten states have lobbied
The majority of the statutes place some limits on coverage,
successfully for the enactment of laws
either by limiting the dollar amount of reimbursement or by
that require insurance companies to
limiting the number of cycles of ART procedures. Additional
either offer or provide coverage of
limits have been included in some statutes; for example, the
infertility diagnosis and treatment
Illinois law, enacted in 1991, exempts small businesses with
fewer than 25 employees. Cost data available from states
with infertility insurance mandates support the fact that the
medical costs bome by an individual infertile couple are minute when
bome by the cross-section of insurance policyholders.
�Virginia and Montana require that health maintenance
organizations (HMO's) provide infertility services. None of
these state statutes or regulations apply to self-insured
companies, which under the Employee Retirement Income
Security Act (ERISA) are exempt from mandates.
JL
While the cost of infertility diagnosis
and treatment can be staggering to an
indiuidual couple, when spread over
the insured population it becomes
extremely small For example,
policyholders in Massachusetts paid
$1.70 per /am/iy contract per month in
J990 to couer infertility.
At the federal level, a few programs provide some coverage
of infertility services. The Alan Guttmacher Institute reports
that Medicaid and the Title X program are the two major
sources of public funding for infertility services. States are
permitted to consider infertility as a family planning service.
Although the federal Medicaid statute does not preclude coverage of
ART, no state had paid for these procedures as of 1987 although some
reported that they would if a reimbursement claim was submitted. Title
X of the Family Planning Services and Research Act of 1970 authorizes
grants "to assist in the establishment and operation of family planning
methods, infertility services and services to adolescents". According
to the Title X Program Guidelines issued by the Department of Health
and Human Services in 1980, grantees, at a minimum, must provide
Level 1 infertility services, which include "an initial infertility interview,
education, examination, appropriate laboratory testing, counselling and
referral."
23
24
25
Dispelling Myths and Misunderstandings
About Infertility
A number of misunderstandings, misconceptions and myths surround
infertility. This is not surprising given that infertility is a private,
complex illness with a host of causes and effects, the primary effect
being the inability to reproduce.
Myth: InfertUhy is an eleclive condition.
Infertility is a disease of the reproductive system, as defined
above by the AFS and the ACOG. People do not elect to
acquire infertility. Treatment of infertility is not a luxury, nor is it
cosmetic, for there can be serious physical and psychosocial
health risks associated with this condition. For example, pelvic
inflammatory disease can lead to scarring of the fallopian tubes,
which can result in ectopic pregnancy.
Misunderstanding: Why should society help pay for couples to
achieve pregnancy?
The desire to parent is the most fundamental desire of the
human race, and is essential to the sustenance of society and
the human spirit. The AFS "considers the right to procreate to
be a fundamental human right. . . Society has a moral obligation to provide . . . access to health services for treatment of
infertility." When signing the Illinois bill to require infertility
insurance coverage Republican Governor Jim Edgar said," This
legislation responds compassionately and responsibly to the
26
23
�years inrertiie couples have paid insurance premiums that cover
the cost of maternity care for fertile couples, yet when confronted
with the disease of infertility often find their own coverage inadequate or non-existent.
Myth: InfertOhy services are Just too costlyforsodety to bear.
Infertility accounts for only 0.1% of the total U.S. health care
budget. In states where infertility insurance mandates have been
enarted, costs to insurers and policyholders have been shown to
be extremely small. In Maryland, where coverage for IVF has been
provided since 1985, policyholders paid $0.08 per family contract
per month in 1988. In Massachusetts, where legislation requiring
infertility coverage was passed in 1987, policyholders with nonprofit insurers paid $1.70 per family contract per month in 1990.
28
2 9
Misunderstanding: If infertile people would Just learn to relax, they
would get pregnant
Infertility is a disease with a physiologic origin. Relaxing will not
cure infertility any more than it would any other illness. Stress
rarely, if ever, causes infertility, but infertility does cause stress.
Couples longing for children have a
greater chance of achieving their goal
through in vitro fertilization than
through adoption. Forexampie, in
Maryland, at a single /VF center more
healthy infants are bom each year than
are adopted through all the adoption
agencies in the state combined.
30
Myth: If couples really want children, they can )ust adopt
Adoption as a recourse for infertile couples has become
increasingly difficult. The number of healthy infants available for adoption has decreased dramatically in recent
years. Waiting periods for healthy infants can be as long as
2 to 6 years, and costs can run as high as $25,000 for a
single adoption. Some children waiting for adoption have
special needs and need parents who are able to give them
appropriate care, an ability not shared by all infertile
couples.
Misconception: Infertility is something that happens only to middle
class white couples.
Although it is widely perceived that infertility affects only the white
middle class, this disease affects everyone. In fact, the incidence
of infertility is 1.5 times higher among blacks than whites.
31
Myth: Infertility requires advanced, experimental technologies like IVF
which have low probability of success.
Fewer than 2% of infertile couples are treated with ART procedures. Since IVF was first introduced in the U.S. in 1980, almost
16,000 babies have been bom from ART. The U.S. IVF Registry
reported that, in 1990, a total of 5,193 babies were bom as a result
of ART. The overall live birth rate for IVF was 14%. and for GIFT
was 22%. These figures must be compared with the 20% chance
in any given month that reproductively normal couples have of
achieving a pregnancy.
32
33
�There is a growing recognition among consumer and medical groups
that infertility should be included as part of a basic medical benefits
package. The Campaign for Women's Health, a broad-based coalition
of organizations that has put together principals for health care reform,
states: "A full range of reproductive health services should be available"
specifically including infertility. Also joining the ranks is the Alan
Guttmacher Institute which, in its statement on health care reform,
recommends the coverage of the full range of reproductive health
services for all individuals including "basic infertility services". Other
groups following suit include RESOLVE, which at its May, 1992, Board
meeting adopted the following policy statement:
Health care reform in the United States is
"RESOLVE supports affordable, quality health care for all
urgently needed. None of the current
Americans. All such health care benefits should include
reform proposab addresses infertility, yet
pregnancy related benefits for the infertile and, as a
most would eliminate gains made by
component thereof, coverage for all procedures and
infertile couples at the state level ta
medications necessary to achieve and maintain a
remove inconsistencies in the present level
pregnancy. " 36
of infertility coverage. Infertile couples fear
that unless policymakers recognize their
The AFS, an organization whose 11,500 health care profesdisease health care reform for the infertile
sionals specialize in reproductive medicine, adopted the
would be a major step backwards.
following policy statement in July, 1992:
34
35
"The American Fertility Society (AFS) supports the
inclusion of reproductive health care services in any state and/or
federal health care reform proposal. These services should include,
at a minimum, mammography and pap smears, contraceptive
services, infertility services and pregnancy related benefits."
37
Health Care Reform:
Where Does Infertility Fit In?
The high costs of health care and the lack of insurance coverage for an
estimated 37 million working Americans have made health
care reform one of the most important issues of concern to
Americans and their elected officials. In the recently adThe desire to parent is the most fundajourned 102nd Congress, over 50 health care reform promental desire of the human race, and is
posals were introduced ranging from universal care for all
essential to the sustenance of society and
Americans to modest revisions of the current system. Many
the human spirit All Americans are
states have also been active in developing their own reform
entitled to fulfill this desire by the means
proposals. In addition, all of the presidential candidates
most appropriate to them. It is our
pledged to make health care reform a major issue. Health
society's moral obligation to support and
care providers and consumer groups are calling for urgently
assist in the creation of families.
needed comprehensive change.
The infertile community has some concern that infertility, a disease
which affects a minority of the population, will be forgotten in the wake
of potentially sweeping changes in health care coverage. None of the
reform proposals currently under consideration specifically addresses
the diagnosis and treatment of infertility. Plans which call for the elimination of state mandated benefits would negate insurance coverage
gains for infertility in those states with laws requiring the coverage of
�Summary and Recommendations
Infertility is a disease with broad medical and social implications. The
desire to bear children and to have a family is one of the most basic in
life. Recognition of infertility as a medical problem by public policymakers in the United States has been slow, leading to arbitrary and
inconsistent insurance coverage of this disease. As our nation grapples
with the issues surrounding health care reform and better access to
affordable health care services, this important aspect of reproductive
health should not be overlooked.
•Infertility is a disease, and coverage for infertility should be
included in health care reform proposals.
• All Americans are entitled to receive coverage for basic
diagnostic and treatment services for infertility.
•There is a need for consistent policy coverage of infertility.
Current coverage of the diagnosis and treatment of infertility is
arbitrary and inconsistent.
•As any action on reform proposals will provide the prototype for
revision of the entire health care system, it is important that
infertility be recognized now as a serious health care problem.
REFERENCES
1. Investigation of the Infertile Couple. The American Fertility Society, 1991
2. "Infertility As a Disease", Policy Statement, The American Fertility Society,
July 20, 1990
3. Ibid.
4. Fecundity and Infertility in the United States. 1965-88.
William D. Mosher, Ph.D. and William F. Pratt, PhD., U.S. Department
of Health and Human Services, National Center for Health Statistics,
December 1988.
5. Ibid.
6. Current Issues in Women's Health. An FDA Consumer Special Report.
"Trying to Outsmart Infertility", U.S. Department of Health and Human
Services, Food and Drug Administration, November 1991.
7. Ibid.
8. Ibid.
9. Investigation of the Infertile COUPIP. The American Fertility Society, 1991,
"Infertility". ACOG Technical Bulletin, The American College of
Obstetricians and Gynecologists, No. 125, February 1989.
10. The Women's Health Data Book. A Profile of Women's Health in the United
States. Jacqueline A. Horton, ScD, Editor, The Jacob's Institute of
Women's Health, 1992.
�Guidelines on gamete intrafallopian transfer (1989), and zygote
intrafallopian transfer (1993).
12.
Investigation of the Infertile Couple. The American Fertility Society. 1991.
13. "Fertility Clinic Success Rate and Certification Act of 1992",
Report 102-624, 102nd Congress, U.S. Congress, 1992.
14. Women and Depression: Risk Factors and Treatment Issues.
American Psychological Association, 1990.
15. Investigation of the Infertile Couple. The American Fertility Society, 1991.
16. ibid, and The Infertility Etook. A <:gmprghgnsivs Msdrenl and Emotigncil
Guide. Carla Harkness, 1992.
17. Infertility: The Emotional Roller Coaster, Sally Cook, Ruth Streeter and
Serono Symposia USA.
18. Infertility: Medical and Social Choices. U.S. Congress, Office of Technology
Assessment, 1988.
19. Ibid.
20. Ibid.
21. Ibid.
22. "Infertile Employees Seek Firms' Support", The Wall Street Journal.
Tuesday. May 12, 1992.
23. The Need. Availability and Financing of Reproductive Health Services. The
Alan Guttmacher.Institute, 1989.
24. "Program Guidelines for Project Grants for Family Planning Services", U. S.
Department of Health and Human Services. 1980. • 25. Ibid.
26. The American Fertility Society, Policy Statement, September 1986.
27. "Edgar stuns women, business groups as he signs infertility bill."
Chicago Tribune. Tuesday, September 245, 1991.
28. "Infertility Insurance Update", RESOLVE, Inc. 1991.
29. Ibid.
30. "Come Out, Come Out, Wherever You Are: The Sequel", Dan Clements,
Newsletter RESOLVEof DaUas/Ft. Worth, June/July 1991.
31. Infertility: Medical and Social Choices. U. S. Congress, Office of Technology
Assessment, 1988.
32. The American Fertility Society, Press Release on Fifth Annual Report of the
U. S. IVF Registry and Related Procedures, January 10, 1992.
33. Ibid.
34. "Campaign for Women's Health Principles", A Project of the Older Women's
League, 1992.
35. The Alan Guttmacher Institute, "Board of Directors Statement on Health
Care Reform", March 5 and 6, 1992.
36. RESOLVE, Inc. Resolve Policies, 1992.
37. The American Fertility Society, Policy Statement of Health Care Reform and
Reproductive Health, July 1992.
�NATIONAL
BLACK W O M K V S
HKAI.TH
PBOJKCT
11^7 Ralph David Ahornalhy BlvJ . S.W.
Allaiua. Georgia
(4()4| 75X-y.S9(]
l-K(K)-ASK-BWHP
FAX(4(W)7ris-%6l
Black Women's Health:
"...Sick And Tired Of Being Sick and Tired"
...Fannie Lou Homer
Proposal
Summary
- s a if - -W77
�Black Women's Health:
We Are Sick And Tired of Being Sick and Tired
SUMMARY
The National Black Women's Health Project (NBWHP) is a self help and health advocacy organization
that is committed to improving the overall health status of Black women. We define health care for
African American women broadly as our physical, mental, spiritual and economic health & well being.
The core program of the NBWHP is based on the concept and practice of self help and the inclusion of
all African American women, with a special focus on Black women living on low incomes. At the
National Black Women's Health Project, we have adopted Fannie Lou Hamer's battle cry: We are sick
and tired of being sick and tired.
Ever pressing in our agenda is the need to elevate African-American women's health concerns to a
primary position in the nation's agenda. Any proposed health care plan must address women's needs for
a full range of preventive, diagnostic, and treatment services. It must remove the current barriers women
face when trying to access these basic services. The cost of preventive health care services must be
affordable. Women's access to services must not depend on ability to pay, employment status, or health
status. Services must be available in a variety of settings with a strong emphasis on increasing the
availability of community based care. Periodic check-up, health care, family planning, abortion and
infertility treatment, must be available to all women.
The national research agenda must include significantly increased attention to health issues of concern
to African American women. This agenda must include issues related to African American women's role
as formal and informal caregivers. Our economic, social, family status, and consequent greater
vulnerability to specific health problems (such as domestic violence, homelessness, sexually transmitted
diseases, workplace stress, etc.) must be addressed in a cultural context. Reproductive freedom requires
an understanding of the unique position of African-American women, occupational hazards as related
specifically to women's work environment, as well as to the incidence and treatment of specific diseases.
In the face of AIDS, soaring infant mortality rates and the scrounge of crack cocaine, more black
physicians than ever are needed to provide quality care for communities whose residents have historically
received substandard treatment and lacked adequate access to medical care. Of the nations 585,597
physicians a mere 3,250 or less than one percent are Black females, according to the American Medical
Association. Several factors, including drastic outbacks in federal aid and affirmative action programs,
the deterioration of urban schools, perceptions of racism and the mercenary image of the medical
establishment, have made medicine a less viable career choice for African Americans.
Because so many programs designed to ameliorate the conditions of low-income people-inadequate as
they may have been-have been abolished or cut back in recent years, accessibility to health services has
become an especially pressing problem for Black women and their families. Sustained poverty,
frustration, and hopelessness are all too often the long-term outcomes. African American women can
no longer be denied the very choices/options necessary to make good decisions regarding our survival
and improving the quality of life for our families such as educational opportunities, decent livable wages,
affordable, safe, quality housing in drug-free communities, and comprehensive quality health care which
includes safe, accessible, and effective contraceptives and the availability of safe abortions...
�The major obstacles Black families face today are rooted not in racial pathology, but rather in culturally
insensitive and inadequate health care policies which challenge us to renew our efforts to make
government more accountable for the physical and mental well-being of Black women. Policies should
not stand in polar opposition to our lives. It is impossible to adequately address the state of America's
health without looking at the condition of Black women's health. For we are inextricably connected.
However, the Clinton Administration must guard against quickfixesand simplistic answers to complex
family problems that require long-term attention and multiple remedies. The Clinton Administration
cannot afford to allow proposed solutions to be twisted into general attacks on supposed failures in social
programs, nor can they be transformed into a new cycle of blaming the victim and greater race and class
polarization.
The NBWHP continues to be a militant advocate for women's reproductive freedom and a passionate
defender of choice for African American women. Reproductive health and rights must be defined in a
much broader context than just the right to choose abortion. It must include access to quality
information, as well as services for prenatal care. It requires safe, effective, and affordable contraceptive
options; age and culturally appropriate sex education & affordable infertility treatment. AIDS research,
prevention, and treatment targeted to women of color who are the fastest growing group of HIV infected
people. An end to coercive use of contraceptives and sterilization abuse and access to safe legal abortion
are different issues for African American women because of our undervaluation due to racism.
Through its community-based self help programs, The NBWHP has created a safe place for Black women
to talk about the multitude of hurts that have kept us from living full and healthy lives. Many black
women are no longer suffering in silence from the sexual abuse we suffered. Thanks to increased
awareness int he Black community, a growing number of abused Black women are seeking help in selfhelp programs and battered women's shelters. We have begun using the criminal justice system to end
the violence in our lives. We are standing up for the healthy, nurturing relationships we rightly deserve.
The Clinton Administration can support our efforts by providing communities with the tools needed to
become independent, autonomous, and self-directing.
Furthermore, NBWHP conferences, weekend retreats, wellness programs, public education and policy
advocacy work, testimonies, legislative updates, educational films, publications, and training seminars
are widely acclaimed for dealing with Black women's health concerns within the context of Black culture.
The NBWHP has worked tirelessly to help Black women who are "sick and tired of being sick and tired"
improve their mental and physical well-being through empowerment. We urge the Clinton Administration
to solicit input from the National Black Women's Health Project for appointments to key health positions
on decision-making boards, commissions, advisory and other regulatory bodies.
The National Black Women's Health Project challenges the Clinton Administration to:
1) Improve the Status of African Women's Health and Reduce Infant
Mortality
2) Provide Universal Health Care Coverage
3) Prioritize African American Women's Health Research
4) Ensure African American Women's Reproductive Health and Rights
6) Build Healthy African American Communities
�NATIONAL
BLACK W O M K V S
HKAI.TH ( j j j ^ PROJKCT
i : i 7 R.ilph David Ahcmalliy Blul .SW.
Allanla. Gcorjiia 30310
(404)758-9590
I-S00-ASK-BWHP
FAX (404) 75H-%M
Black Women's Health:
"...Sick And Tired Of Being Sick and Tired"
...Fannie Lou Hamer
Proposal
to the
Clinton Administration
�Poverty is at the core of the interrelated social ills which has had a devastating impact on the African
American community.
It has been said that if you wish to measure any society, you should look no further than how it treats its
women. Based on the socio-economic status of African American women, it is clear that there is much work
to be done within the African American community. Vilified and blamed as the cause of all our social ills (ie.,
over-population, budget deficit, breakdown of the family unit) yet we are denied the very choices/options
necessary to make good decisions regarding our survival and improving the quality of our families, ie.,
educational opportunities, decent livable wages, affordable, safe, quality housing in drug-free communities, and
comprehensive quality health care which includes safe, accessible, and effective contraceptives and the
availability of safe abortions.
African American women remain at the bottom of the economic ladder. African American women are in the
most menial, lowest paying, non-unionized jobs. African American women and their families suffer from
inadequate health care and greater exposure to environmental hazards. We have a greater chance of sustaining
serious work-related injuries. Every minute of every day, African American women are victims of neglect,
racial discrimination, economic crisis, poverty, violence, hunger, hopelessness, and despair.
In 1990, more than half the nation's 10 million African American children under 18 years old lived in womenmaintained families. More than two-thirds of African-American children are reared in poverty. A major cause
of the increasing poverty in these female-headed households is the decline in real income for these women.
The current federal minimum wage is $4.25 per hour. If a person works full-time for a full year, a minimum
wage job pays $8,840 a yqar. The average welfare benefit is $367 a month or $4400 a year. This is almost
$9,000 less than the federal poverty line for a family of three. The real (after inflation) value of the AFDC
grant fell 42% from 1972-1990, 27% if Food Stamps are counted. In no state does food stamp and welfare
benefits together lift a family of three out of poverty. Meanwhile, during the 1980's, the average pre-tax
income of the richest 20% of all families rose 77%, while that of the poorest 20% declined by nine percent.
Decreasing poverty by increasing the minimum wage is an effectivefirststep to moving African American
families out of poverty. Children reared in poverty often repeat the cycle of poverty. What is required is a
change in the political, social, and economic environment. Key to this change is the empowerment of women.
As child bearers, nurturers, workers and primary providers for the households, African American women
continue to bear the brunt of gross inadequacies. Statistically, African American women and their families are
in far worse health than other segments of the population, as indicated by the national data on major health
problems.
Consider the following, and their implications:
It is a well known fact that the risk of low birth weights is higher for women who are poor, Black, younger than
age 17, have little or no prenatal care, have inadequate diets and gain fewer than 20 pounds during pregnancy,
and for women who smoke, abuse drugs, or consume excessive amounts of alcohol. The strongest correlations are
with poverty and minority status.
�Today, African Americans have the life expectancy that was attained by whites in the 1950's. For the estimated
14 million African American women living in the United States, life expectancy is shorter, and maternal and infant
mortality rates are higher than those of white women;
The incidence of drug abuse during pregnancy among middle- and upper-income women is widely underestimated.
A 1989 study revealed that white women were more likely than Black women to abuse drugs during pregnancy,
yet punitive and coercive policies are more likely to be directed at poor women, disproportionately African
American women.
In New York, 54% of the 78 drug treatment programs refuse to treat pregnant women, 67% refuse to treat
pregnant women on Medicaid, and 87% have no services available to pregnant women addicted to crack who are
Medicaid eligible. Fewer than half of those programs that accept pregnant women provide or arrange for prenatal
care; only two programs make provisions available for clients' children, although lack of child care is a major
obstacle to participation in drug treatment for many women.
African American teens wait an average of 1 year between initiating sexual intercourse and first using a
prescription method of contraception. As many as 80% of pregnant teens become high school dropouts.
More than 50% of all women with AIDS are African American. Over 71,000 African Americans reported being
infected with AIDS; and, at least 80% of all pediatric AIDS cases are born to women of color.
More than half of women on welfare stay on the rolls for less than one year. A quarter leave within four months,
and only one-third stay more than two years. Research on inter-generational welfare use has not been able to
establish that daughters of welfare mothers necessarily end up on welfare too.
Women live in households, communities, and cities, in times, places, and circumstances that spell health or
disease, life or death with greater certainty than does access to health care. Daily, women experience violence
on a personal, institutional, and societal level. African American women are at a disadvantage because we
often lack the necessary economic, political, and legal resources to access information and services.
Unfortunately, African American women tend to be poor women, single, have jobs that demand long and
inflexible working hours, and live in high crime areas. These factors place them at a disadvantage in terms
of their risk of encountering a violent situation.
Also, the problem of alcoholism and substance abuse in African American communities contributes to many
health problems and diseases, particularly HTV infection and other sexually transmitted diseases. Although
alcoholism prevention efforts have increased in recent years, scant attention has been focused on alcohol and
drug abuse treatment in the Black community. Few treatment programs exist for women who are drug or
alcohol abusers. In Massachusetts, treatment programs have become so overburdened that women have been
put in a state prison, where they receive little or no treatment. Most of these women, who have not been
convicted of any crime, are crack cocaine abusers who were committed involuntarily under a state law allowing
judges to commit substance abusers to a 30-day treatment program if they pose a threat to themselves or others.
Addressing substance abuse primarily as a law enforcement issue is inappropriate. Drug addiction including
alcoholism is a disease that requires public health strategies to address the demand for drugs. Prompted by the
severity of the problem, many Black organizations and individuals have launched educational campaigns about
the dangers of alcohol and drug abuse. Perhaps the worst thing about many of these problems is that they pass
�r
rom generation to generation. The Clinton Administration, must support finding a way to break this cycle.
Although issues of cost, quality, and accessibility confront all people regardless of race, gender, or socioeconomic status; poor women and African American women are disproportionately affected by the problem
of unavailable and unaffordable health care insurance. Many central health needs of African American women
are not covered at all. Even life-saving mammography, prenatal care and pap smears are frequently excluded
from health insurance coverage along with family planning and abortion.
It is apparent that any universal, comprehensive health care insurance selected must cover a f u l l range of
preventive health care, including reproductive health. Access to freely chosen reproductive health care, based
on informed consent, must include sex education, safe and reliable birth control, HIV/AIDS and sexually
transmitted disease (STD) prevention, mammography, pap smears and other screening for reproductive health
cancers; testing and treatment for STDs and infertility, prenatal care and post-partum medical care (including
non-coercive treatment for pregnant addicted women), and abortion - available to all women.
Furthermore, we can wait no longer to address the scarce numbers of African American primary care
practitioners in our communities and in our medical educational and training institutions. In addition, we
insist upon access to care—without regard to race, class, age or geography. We must utilize the full range
of African American health professionals including nurse practitioners and midwives, but also provide medical
training and financial support for our disadvantaged sectors to enable us to better serve our communities.
The substandard health status of African American women living in poverty is clear-the data are convincing
d inescapable. In fact, it is possible that the actual health status of our women is worse than that implied
j national statistics, because such statistics are chiefly derived from diagnosis made at public health care
facilities. But women in this population typically present themselves at public care facilities only when
necessary, that is, when symptoms can no longer be ignored and home remedies have failed. This should not
be surprising, since treatment at a public clinic usually involves a wait of many hours, after which the treatment
received is often perfunctory and depersonalizing. Yet prevention of mortality from the health problems that
most affect our population requires early diagnosis and preventive treatment which are precluded by the
conditions of public health service delivery.
Although there are a host of state and federal subsidies for segments of society, there is a vehement and
malicious focus on the benefits received by low-income women and children. "Welfare Reform" has become
a code word for forcing poor individual not seen as having rights into low-paying jobs without health care,
pension, paid vacations or sick leave; kicking some people off public assistance; and regulating poor women's
reproductive health (ie., the Hyde Amendment which prohibits Medicaid funded abortions and mandating or
financially enticing African American and poor women to use NORPLANT). Public policies and programs
that are aimed at controlling the social behavior and fertility of women poor women are immoral.
Unfortunately, the "welfare reform" proposals which we have witnessed in this country have targeted and
penalized the individual instead of attempting to rectify the failures of the welfare system.
The consequences of poverty, racism, and gender discrimination are complex and far-reaching. They affect
this population in ways that are often invisible and usually ominous for their health and well-being. For
example, federal and regional financial policies lead to cutbacks in food stamps and other entitlement programs.
�Eligibility criteria, becomes more stringent thus diminishing the minimal resources that have been available.
Increased unemployment from economic recession leads to shortfalls in city and state tax collections. Budget
cuts lead to reduction of already inadequate resources, e.g. (repairs and maintenance of public housing),
consequently exacerbating crowded, substandard living conditions for the target population. Furthermore,
decades of feeling blamed for the very circumstances that entrap them have led persons in this population to
an increased sense of helplessness, low self worth, and social isolation. These are negative health indicators.
Distress and despair contribute to increased levels of hopelessness among the socially disenfranchised.
Cynicism and hostility are ofttimes directed at overworked welfare bureaucrats trying to deliver depersonalized
and fragmented services. Both singularly and combined these psychological conditions: despair, hopelessness,
cynicism and hostility are known to be associated with health (Barefoot et al., 1991; Houston & Vavak, 1991;
Williams & Barefoot, 1988). As Barefoot (1991) wrote:
This topic is important to health psychology because a large body of research has demonstrated a
link between chronic hostility and adverse health outcomes such as hypertension, coronary heart
disease (CHD), and premature mortality. The cynicism and mistrust among minority groups
members and those with low status may be an understandable response to the hostile environment
in which they live. Triandis (1976) suggested that eco-system distrust may be adaptive in a ghetto
environment but maladaptive for large-scale industrial environments that are based on assumptions
of interpersonal cooperation. In addition, W.G. Dahlstrom et al. (1986) suggested that these
attitudes may hamper effective coping and increase the risk of psychiatric disorder. In view of the
literature on the link between hostility and health, we suggest that they may also contribute to the
risk of disease and early mortality among minority and low-status individuals (Barefoot et al., 1991,
pp. 18, 22).
Fragmented health and social service agencies in the larger community are a major factor that negatively
influence the overall quality of health care for this population. Community-based leadership is uniquely
positioned to work to develop cooperative relationships with public and private schools and other potential
resources. Moreover, cumbersome bureaucracies, heavy case loads, limited resources, and negative social
attitudes all contribute to the depersonalization of clients. Clients perceive that they must "swallow their pride"
in order to obtain needed services. Community-based self-help agencies are committed to the task of working
aggressively to enhance the coordination of service delivery. Moreover, they must educate those who provide
such services about their clients' need for respect and understanding as well as for food stamps, financial
assistance, and health care.
Conventional social service programs are not designed to address these conditions. While entitlement programs
are obviously necessary, their structure and operation address the symptoms of hunger and disease rather than
the conditions that create them. What is needed is an intervention that replaces despair with self-respect and
self-knowledge, cynicism with hope, helplessness with a sense a personal power, social isolation with personal
connectedness and a sense of community, and a legacy of shared shame with a vision of shared confidence for
the future. Self-help is the basic acceptance of Black women as worthy individuals. It encourages and
empowers women to trust, to make decisions about their lives, and understand themselves and the reaction of
others to the realities created by social inequities of race, class, and gender. African American women are not
all alike. It is important to recognize our diversity; to understand and appreciate what factors contribute
positively to our lives and culture. Health educators, medical providers, and service program planners can
�benefit greatly from the involvement of people as active participants in our own health care rather than as
passive recipients of services. Indeed, the success of these services depends upon the acceptance and active
involvement of the women expected to benefit from them. We recognize that the women most often affected
by a problem and living with it daily, often carry the solutions within themselves.
A successful approach must be culturally specific in design, content, and implementation. This approach
recognizes the inherent strengths of the African American culture. It validates and respects the worth and
importance of African American culture in providing a way of life. It recognizes that culture embodies values,
beliefs, and attitudes that can influence lifestyle changes positively, independent of socio-economic status.
Reducing poverty will greatly improve the health and well-being of African Americans, but being poor does
not explain all of the excess mortality experienced by African American infants and their families. For African
American families being college educated offers very little protection against having a low birth weight baby
(Schoedorf, Hogue, Kleinman, Rowley; New England J Med, 1992; McGrady, Sung, Rowley, Hogue; Am
J Epid, 1992). Furthermore, studies of mortality among African American adults demonstrate that at least 30%
or more of the excess mortality can not be explained by poverty or other known risk factors (Otten et al.;
JAMA 1990; Sorlie et al. Lancet 1992). If being poor does not explain all of the excess risk of morbidity and
mortality among African American women, then what does? A research agenda is needed that explores the
environmental exposures and the societal context that put African American women at a higher risk of
morbidity and death.
There are, of course, able African American women who have been responding to the needs of African
American women through this extremely difficult period. The National Black Women's Health Project
(NBWHP) has in place a series of programs, services and strategies that are designed to provide the type of
preventive services that are pivotal to improving women's health, self-esteem and quality of life. More
importantly, NBWHP has the capacity to provide leadership and consultation in both the design of public policy
and the hands on implementation of effective strategies and interventions which impact on the health and wellbeing of African American women and their families.
The National Black Women's Health Project has outlined on the following pages specific recommendations
regarding what must be done in the Clinton Administration to begin to address the critical health issues
affecting African American women and their families.
�Building Healthy Communities
The National Black Women's Health Project firmly believes it is critical that the ongoing input of African-American
women be institutionalized in the setting of the policy agenda of the new Administration. An immediate reallocation of
spending priorities in the budget for drug prevention, education and treatment is essential. In order to provide
communities with the tools needed to become independent, autonomous, and self-directing the focus must be based on
a community-based intervention that best ensures empowerment and includes the following components:
9
Enter the community by way of existing community-based groups, such as local religious groups, community
action groups. Head Start, school-based clinics, local community health centers, and local public housing
communities;
$
Strengthen community leadership. It is dis-empowering in the long run for governmental and private sector
experts to provide direct leadership in communities.
9
Facilitate the development of community resources by first looking to support, strengthen and build upon existing
community resources including human resources. Few interventions are more important than the government
and private sector's creation of jobs, including job training and placement programs for youths.
9
Partnerships and coalitions between and among community consumers and 1) other public sector entities; 2)
private, the non-profit provider agencies and 3) private, the for-profit sector. Government should seek ways to
support and strengthen these empowering relationships.
9
Start where the community is, not where the experts would like the community to be. It is the community that
must define the problems needing attention, therefore, they must also be active participants in planning
interventions. Too many times, government and the private sector go into communities with the belief that they
know what the community needs; then they plan and implement their own program. When no one participates
in these programs, the experts are disappointed and blame the victim...
9
Provide communities with adequate seed money and help identify other co-funding partners, in support of
community-based, community-defined health and/or social service interventions.
9
Provide educational and financial resources for coordinated on-site services within public schools which provide
academic enhancement, mentoring, job readiness, family life skills, and preventive health services, child care and
other support services for African American children.
9
Formation of a community coalition board. The majority of the board members must be consumer members of
the target community; others to be included are other partners, coalition members and co-funders: from the
public sector, and both the non-profit and for-profit private sectors. The community coalition board must be a
decision-making, not an advisory board and it should be empowered to make all decisions about policy and
resource allocation.
9
Provide initial and on-going training and technical assistance to both the community coalition board and to the
targeted community, in order to support and strengthen their planning and decision-making roles, and therefore,
empower them.
�Health Care Reform
The National Black Women's Health Project supports a comprehensive approach to address the four major areas in
which reform is needed: access, prevention, treatment, and research. Any health care plan proposed must address the
following:
9
Universal access as well as a comprehensive benefits package which meets women's health needs and is
affordable, regardless of gender, race, or socio-economic status. This principle is particularly important for
women whose work and family life patterns do not fit any fixed or stereotyped mold. It is imperative that
complete and continuous coverage be available to all individuals, including those working part-time or on a
seasonal basis, or who are not in the paid labor force at all and to those who go on and off public benefit
programs.
?
Require a minimum benefits package specifying preventive health care services that maintains health and runs
the gamut from routine check-ups for pregnant women, to diagnostic and screening services such as
mammography and pap smears, and well baby care. Reproductive health must be considered routine care and
include prenatal, family planning, infertility and abortion services. These services must be considered linked and
inseparable. Therefore, must offer services from a wide range of providers, in a wide range of settings and
provide accessible community care. Delivery of care should encompass culturally sensitive, community based,
family oriented, and holistic health services.
$
Include the special treatment needs of substance abusing pregnant women, HIV infected and battered and abused
women. Substance abusing pregnant women frequendyfindit difficult to locate facilities which will accept them,
but when they do, they must be assured that their treatment costs will be reimbursed and childcare is provided.
9
Cost sharing in the form of co-payments and deductibles should not constitute barriers cares. Affordability is
critical for women whose average earnings are still 30% less than men's. Moreover, female heads of households
are far more likely to be without health insurance than male single heads of households.
9
Expand education and training programs for health care consumers and practitioners in the areas of prevention
and wellness, and culturally sensitive health interventions.
9
Allocate capital funds to rebuild and restore health and related services in poor African American communities.
Also, the allocation of education and training funds to increase the number of African American health
practitioners.
9
Solicit input from the National Black Women's Health Project for appointments to key health positions on
decision-making boards, commissions, advisory and other regulatory bodies.
�Women's Health Research Priorities
In determining a women's health research agenda the National Black Women's Health Project believes it is crucial that
behavioral factors, age, family, work roles, and gender attitudes, as well as race and class, be considered. The
complexity of interactions between biological, psychological and social issues that impact on medical problems is
enormous. However, since "health" is defined by all these variables in any given individual or population, we must
continually strive toward this goal.
$
Include in a national research agenda increased attention to the health needs of African American women,
accelerate appointments of African American women to senior research positions, and create opportunities for
young and low-income African American women in scientific research.
9
Include women in clinical trials in the same proportion as men and analyze the data for gender differences.
Assure the inclusion of African American women, older women, lesbian, differently-abled women and women
with specific health and medical conditions.
9
Develop research methodologies to account for women's reproductive capacities.
9
Expand the definition of women's health to include the health consequences of the economic, social and
psychological roles of women, including but not limited to the health effects of violence against women, poverty,
homelessness, women as care-givers, workplace harassment, stress, occupational and workplace safety, and lack
of education, employment, and job training.
9
Support a new research program that focuses specifically on African Americans. Studies of ethnic differences
between African American women and other groups will not be informative since our understanding of the
societal factors and inherent strengths of African American culture that could influence health is limited.
9
Require an advisory board to the NIH Office of Research on Women's Health, to include at least one-third
consumers representation from the NBWHP and other members of the women's health community.
�Reproductive Health and Rights
The National Black Women's Health Project defines reproductive rights for African American women in a much
broader context than just the right to choose abortion, to include access to quality information as well as services for
prenatal care, safe, effective, and affordable contraceptive options, age and culturally appropriate sex education,
affordable infertility treatment, AIDS research, prevention, and treatment targeted to women of color, an end to
sterilization abuse and access to safe legal abortion. Therefore, we recommend the following:
9
Health care reform must include a full range of reproductive health care. Access tofreelychosen reproductive
health care, based on informed consent, which includes sex education, safe and reliable birth control, health
services to prevent sexually transmitted diseases, prenatal care (including non-coercive treatment for pregnant
addicted women), and abortion — available to all women; Such services should be provided through coordinated
care.
$
Passage of the Freedom of Choice Act (FOCA),freefromcrippling amendments such as prohibition on funding
for poor women's abortion, parental involvement requirements, or mandatory waiting periods;
9
Passage of the Reproductive Health Equity Act (RHEA) that amends various provisions of the law to ensure that
federally funded programs provide abortion related services in the same manner that other pregnancy-related
services are available.
$
Reverse through executive order:
1)
The Title X gag rule, which bans non-physicians at federally funded family planning programs from
providing abortion information, counseling, or referrals.
2)
The Mexico; City Policy, the seven year old gag rule for private international family planning
organizations that receive United States aid.
3)
The ban on abortion services in overseas military hospitals and at the Indian Health Service sites.
4)
The ban on importation of RU-486 for personal use, issued by the FDA soon after the drug's approval
in France.
5)
The ban on federal funding of research using transplantation of fetal tissue from induced abortion.
$
Training of reproductive health care providers including abortion training and services, ensuring that the number
of women and people of color practitioners trained are geographically located and proportionate to the number
of women needing services.
9
Research on and funding for safe, effective contraception and contraceptive services, infertility, education on and
the prevention of sexually transmitted diseases;
9
Include in Category B of the Centers for Disease Control and Prevention's (CDCP) AIDS Surveillance Case
Definition chronic Pelvic Inflammatory Disease (PID) as well as vulvovaginal candidiasis (persistent, frequent
or poorly responsive to therapy). We support the proposed expansion of the CDCP's AIDS Surveillance Case
Definition. By including pulmonary tuberculosis, recurrent bacterial pneumonia, and invasive cervical cancer,
we believe the expanded definition will better reflect the effects of the ADDS epidemic on women.
9
Representation of the National Black Women's Health Project in appointments to commissions, task forces,
or committees dealing with public policy and program planning on reproductive health issues.
�Infant Mortality
Low birth weight, which is preventable, is the most important predictor of infant mortality. For the estimated 14 million
African American women living in the United States, life expectancy is shorter, maternal and infant mortality rates are
higher than those of white women. African American babies die at a rate of two and one-half times that of white babies.
Similarly, white women are likely to be twice as healthy as African American women. The health of mothers is a
determinant of the health of babies. The United States model of care provides a high-tech, high intervention approach
to maternity care which has not improved this situation for decades. The National Black Women's Health Project
recommends an approach to maternity care that includes:
9
Each individual must be covered from the moment of birth regardless of the form the health care system takes.
This can be accomplished either through a system that covers everyone in their own right or one that covers
dependents fully;
9
The use of midwives to deliver prenatal care in their communities;
9
An emphasis on care that includes housing, nutrition, income, emotional and social support;
9
Improve the home environment through the provision of community-based comprehensive medical and social
services during the post-neonatal period. This would in affect reduce the higher rate of infant deaths due to
illnesses that occur during this time period such as infection, sudden infant death syndrome, and injuries which
appear to be related to the effects of poverty;
9
Reduce the rate of pre-term delivery among poor women, disproportionately African-American women;
9
An increase in prenatal care and births in low-cost,freestanding birthing centers with midwives providing care
and deliveries;
9
Apprenticeship programs to train midwives to provide care;
9
Government regulations to provide oversight for midwifery practices including malpractice insurance and
decriminalization of midwifery;
9
Follow-up care for the first 17 years of life of the child.
9
Representation of the National Black Women's Health Project in appointments to commissions, task forces, or
committees dealing with public policy and program planning on infant mortality issues.
10
�Welfare Reform: Stop Blaming the Victims
The National Black Women's Health Project serves as a voice for women and their children who are on welfare. We
believe it is important to include the voices and experiences of women who are actually attempting to provide for their
families on AFDC (ie., improvished incomes). The following are specific recommendations to the Clinton
Administration.
9
Raise the Aid to Families with Dependent Children, General Assistance, and disability above the poverty level.
No Workfare for Grants!
9
Provide state subsidized childcare for low income families;
9
Increase the housing stock for low income families;
9
Eliminate penalties when welfare recipients subsidize their poverty incomes;
9
Allow mothers who receive child support from fathers to keep it all for the care of their children instead of
receiving $50.00 per month per child. Also, make sure health care coverage is included in child support awards;
9
Ensure that reproductive rights are guaranteed to all women not just wealthy women or women who do not rely
on the government as their health service provider. Repeal the Hyde Amendment thereby giving poor women
on Medicaid the ability to choose abortions, not just sterilization when confronted with unintended pregnancies;
9
Demand that consideration be given to the safety, accessibility, and potential for coercive, punitive or racially
discriminatory use of any reproductive contraceptive (ie., NORPLANT) is proposed or targeted at a particular
group of women. Public policies and programs that are aimed at controlling the social behavior and fertility of
women poor women are immoral. Require the provision of full and complete disclosure to patients regarding the
full spectrum of contraceptive choices including their benefits, side-effects and the potential risks of each method.
9
Create jobs and raise the minimum wage to a livable standard. Poor people who undertake the risk of poorly
paid, seasonal or part-time work should never be worse off than if they had simply stayed on welfare.
9
Insist that States periodically reevaluate their AFDC need and payment standards. There are no federal standards
for AFDC benefits. Each state isfreeto set benefits at the level it chooses. Federal Food Stamp benefit levels
are federally determined, nationally uniform, and the costs are borne by the federal government. These
requirements would ensure that benefit inadequacies would be address at the national level.
11
�P
Planned Parenthood'
Federation of America, Inc.
What We Mean When W Talk About Reproductive Health Care
e
* Contraceptive services and supplies
* Abortion services
* Voluntary s t e r i l i z a t i o n services
* Basic i n f e r t i l i t y services
* STD and cancer screening
* Preconception r i s k assessment and care
* Maternity care, including prenatal, delivery and
postnatal o f f i c e gynecology.
* Education and counseling.
WASHINGTON OFFICE
2010 Massachusetts Avenue, NW Suite 500 Washington, DC 20036
202/785-3351
FAX 202/293-4349
�P
Planned Parenthood'
Federation of America, Inc.
Principlcfl for Federal Health Care Reform
1. Universal Coverage, w i t h ready access t o low-income people
and minors, and c o n f i d e n t i a l services a v a i l a b l e t o a l l .
2. Basic b e n e f i t s should emphasize prevention and include
conprehensive r e p r o d u c t i v e h e a l t h care, w i t h an emphasis on
prevention.
3. Reproductive h e a l t h care should be recognized as a d i s t i n c t
primary care e n t r y gate i n t o the h e a l t h care system.
4.
No p r o h i b i t i o n s on a b o r t i o n coverage.
5. Continued r e l i a n c e upon community-based, n o n - p r o f i t p r o v i d e r s
i n any managed care/managed c o m p e t i t i o n proposal. (Support from
f e d e r a l and s t a t e p u b l i c funds must not be d i s c o n t i n u e d u n t i l and
unless a new d e l i v e r y system has shown them t o be unneeded.)
6. Cost containment through, among other t h i n g s , g r e a t e r
r e l i a n c e upon and t r a i n i n g of non -physician h e a l t h care
providers.
7. Support f o r community h e a l t h education, i n c l u d i n g i n f o r m a t i o n
on each i n d i v i d u a l ' s r i g h t s and r e s p o n s i b i l i t i e s w i t h i n the
h e a l t h care system.
WASHINGTON OFFICE
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Washington, DC 20036
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�Clinton Presidential Records
Digital Records Marker
This is not a presidential record. This is used as an administrative
marker by the William J. Clinton Presidential Library Staff.
This marker identifies the place of a tabbed divider. Given our
digitization capabilities, we are sometimes unable to adequately
scan such dividers. The title from the original document is
indicated below.
Divider Title:
1O
�"Childbearing P o l i c y W i t h i n a N a t i o n a l Health Program: An
Evolving Consensus f o r New D i r e c t i o n s . " , A c o l l a b o r a t i v e paper
by Boston Women's Health Book C o l l e c t i v e , N a t i o n a l Black
Women's Health P r o j e c t , N a t i o n a l Women's Health Network,
Women's I n s t i t u t e f o r Childbearing P o l i c y " .
*
Present childbearing
needs of women and
*
A national
program
should
focus
on both
the
clinical
needs of women and children
as well as the conditions
of
everyday
l i f e which influence
health
and
"preventionoriented
primary
care".
*
A national
appropriate
*
Opportunities
expanded.
*
Women should
of appropriate
program
provider
for
policies
children.
should
of care
the
have
failed
to meed
the
recognize
midwives
as an
for childbearing
women.
training
have the opportunity
settings
including
of
midwives
to deliver
birth
should
in a
centers.
be
variety
�Childbearing Policy Within a National Health Program:
An Evolving Consensus for New Directions
A collaborative paper from
Boston Women's Health Book Collective
National Black Women's Health Project
National Women's Health Network
Women's Institute for Childbearing Policy
To be included in proceedings of the national conference
"Forging a Better Way:
Protecting Maternal and Child Health Under National Health Programs''
Kansas City, MO
May 20-22,1990
Please note:
The present version of this paper was developed during an early phase of an
ongoing process. Many additional organizations and individuals will participate
in the development of this evolving paper. All comments are welcome.
Address correspondence to:
Carol Sakala, Co-Director
Women's InstituteforChildbearing Policy
19 Montfem Avenue
Brighton, MA 02135
�Summary
Four national women's health organizations have collaborated to develop this paper. It
reflects an evolving consensus that will involve the participation of many other groups and
individuals in specifying appropriate directions for childbearing policies in a national health
program. Basic indicators of health show that present childbearing policies and practices
have failed to meet the needs of women and children in fundamental ways. A host of systemic
problems lies behind these poor results. Of critical importance is our inadequate attention to
the conditions of everyday life, which are the primary determinants of health. In addition,
our provision of clinical services involves serious and persistent problems of access, quality and
cost. In contrast to the present emphasis on a medical approach to childbearing, we call for an
approach combining women's health and public health perspectives. A women's health
perspective gives priority to the needs of women and their children. The best public health
tradition emphasizes both the conditions of everyday life that influence health and the
provision of prevention-oriented primary care clinical services. Within the United States and
Europe, the midwife most consistently offers such optimal care for women and newborns. Our
national health program should recognize the midwife as the appropriate caregiver for most
childbearing women and should provide broad support for widespread implementation of a
midwifery approach to care. Midwifery care is highly beneficial in that it is primary care, is
safe, enhances access, meets needs of virtually all childbearing women, involves judicious use of
technology, is associated with a highly favorable liability record, is well-received by
childbearing women, and is highly cost-effective. We underscore the importance of promoting
healthful living conditions, and we offer a series of proposals for systematic transition to a
primary maternity care system. These include proposals to expand opportunities to train
midwives and opportunities for healthy women to give birth in health- and birth-oriented outof-hospital settings, together with effective regulatory, educational and reimbursement
mechanisms and a strong research program.
�Present Medical Approaches Have Failed to Meet the Needs of Women and Infants
We are particularly pleased to participate in this forum because we speak on behalf of
many women concerned with childbearing policy and practice in the United States. Our four
organizations have collaborated to develop this paper. This work reflects an evolving consensus
that will involve the partidpation of many women's, community, progressive and other groups in
specifying appropriate directions for childbearing policies in a national health program. We
recognize that the transition to such a program is an important historical moment that gives us an
opportunity to work together to make basic needed changes in childbearing policy and programs in
this country. We seek a system that gives priority to the needs of women and their infants. By
extension, such a system addresses the conditions of everyday life that influence health and
emphasizes what we call primary maternity care services.^
In planning for a national health program, we must face the reality that present
approaches have failed to meet the needs of women and children in fundamental ways. Our
slipping rank in infant mortality among nations of the world — we were 22nd in 1987 — is an
indication of this failure. For the general population and for some groups and areas, basic
indicators of health have failed to improve or have worsened in recent years. For example, from
1985 to 1986, the incidence of low birthweight increased among black and all nonwhite infants and
remained stagnant for the nation as a whole. In 1987, low birthweight rates increased for white
babies, black babies and the nation as a whole. Black mothers and black infants have been much
more likely to die of preventable causes than white mothers and infants; the ratio of black to white
infant mortality has been increasing for many years; in 1987 it was 2.1, the greatest gap since these
2
data were first collected in 1940.
1 Our national health program should integrate such childbearing policies and programs into
comprehensive woman-centered policies and programs addressing a" aspects of women's health.
2 Annualreportsissued by the Children's Defense Fund provide data on these trends for the nation
and for states and major cities, and by race, income, age and other dimensions (see Hughes et al.
1989), and the journal Pediatrics publishes an. annual summary of vital statistics (see Wegman
1989).
�technology involves much unnecessaryrisk,discomfort and expense.^ Many childbearing
technologies come to be widely used in advance of appropriate evaluation and continue to be so used
even when shown to be deficient.^ Medical research, training and practice devalue and virtually
^ On the tendency to routinize obstetrical procedures, see Kozak (1989). She reports that the rate
of procedures per hospital birth, as documented by the National Hospital Discharge Survey, rose
by one-third over the three-year period from 1984 to 1987. During the period from 1980 to 1987,
increases occurred for the following procedure categories: diagnostic ultrasound (800%), vacuum
extraction (529%), manually assisted delivery (518%), fetal EKG and fetal monitoring not
otherwise specified (464%), artificial rupture of membranes (281%), medical induction of labor
(209%), repair of current obstetric laceration (97%), and cesarean section (48%). On the factors
that promote this trend, see Davis-Floyd (1987a, 1987b), Brody and Thompson (1981), and Scheff
(1963).
6 About four million women give birth annually in the U.S., and "female with delivery" is by far
the most common discharge of the National Hospital Discharge Survey (United States
Department of Health and Human Services 1988a). Among ambulatory care visits, prenatal care
is second in volume, behind only "general medical examination" (United States Department of
Health and Human Services 1988b). This large volume of admissions and visits renders maternity
services a profitable target for developers and suppliers of screening tests, drugs, devices,
equipment and supplies, as well as for many service providers.
The Office of Technology Assessment states that approximately "10 to 20 percent of all
procedures currently used in medical practice have been shown to be efficacious by controlled trial"
(United States Congress 1978: 7); and A.L. Cochrane argues that among medical specialists
obstetricians are least likely to conduct randomized controlled trials and to evaluate their
practices (dted in Chalmers 1986). Unfortunately, current federal programs for medical
technology assessment are largely Medicare-driven and give minimal attention to the preeminent
categories of hospital admissions and outpatient visits. Thus, maternity care products and
services commonly become widely used without adequate evaluation. The Oxford Database of
Perinatal Trials has identified about 125 forms of care that either "have unknown effects, which
require further evaluation" or "should be abandoned in light of available evidence." Many others
"appear promising, but require further evaluation" (Enkin et al. 1989: 351-65). A recent Public
Health Service report emphasizes that many aspects of prenatal care have not been evaluated or
are not strongly supported by existing evaluations (United States, Department of Health and
Human Services 1989).
It is also troubling that current evaluation efforts virtually ignore such critical issues as safety,
ethics, impact on quality of life, cost, and utility of alternative approaches (Oakley 1983). For an
example of an analysis that considers sodal, psychological, ethical and other dimensions that are
usually omitted in technology assessment and emphasizes women's experiences, see Barbara Katz
Rothman's study of amniocentesis (1986). This analysis renders current clinical standards for use of
this procedure fadle and inappropriate.
Regulatory mechanisms linking research findings to maternity care practices are weak or
nonexistent (see, for example, Haire 1982). The author states, "most [obstetric drugs] have never
been approved by the FDA as safe for such use."
We must protect women and children from commerdal interests and misinformed practitioners
through a major multi-faceted technology assessment program and effective regulatory
mechanisms for implementing the relevant findings.
�forms of care and our increasing interest in home birth, midwifery care and other options. The
response has included both cosmetic marketing strategies for private maternity patients — such as
9
wallpaper and rocking chairs, and a number of genuine improvements available to more
advantaged women — such as rooming-in and increased partidpation of birthing partners. In
addition, the tremendous authority and legitimacy of medidne in our society have a profound
influence on all of us, encouraging unconditional acceptance of medical practice. Within this
system, obstetricians have had the power to restrain the trade of other practitioners, establish
themselves as preferred maternity caregivers for all women, and promote their standards as the
only acceptable ones.
10
In this general context, many people falsely believe that maternity care is
9
Changes in maternity services are often initiated by marketing departments as a marketing
strategy rather than by clinicians out of commitment to a different approach to care. As one text
states.
Data from national surveys conducted by market consultants and market researchers indicate
that catering to the maternity market segment is critical to patient acquisition, not only for
the maternity department, but for other health services as well. Thirty-eight percent of
maternity clients have their first experience with a hospital through their initial birth
event. This point of entry into the health care system for a young family offers tremendous
marketing potential....
Another statistic providing impetus to hospitals to upgrade maternity care services is that
sixty-seven percent of all health care dedsions are made by women. Not only do they direct
their own care, but they influence family and friends regarding where, how, and when health
care is sought [Dearing et al. 1987: 58].
The text continues to show how the physical setting, services and staff behavior can manipulate
women, and provides case studies in which the motivation to change services was the need for "a
competitive edge," to "regain a market share," to "increase the obstetrical service volumes" and so
forth. Similarly, an article in Business and Health says of women's health services, "this market
is ripe for servicing" ("Providers Target Women with Full-Service Centers" 1986).
Thus, it is not surprising that a survey of 25 in-hospital birth centers found lack of a clearly
delineated alternative concept, low staff commitment to the concept, scantresourceallocation for
these services, restrictive conditions for use of these services and a continuation of usual-care
practice styles (DeVries 1983, 1980). For general analyses, see Worcester and Whatley (1988) and
Ruzek (1980).
10 On efforts to control the attendant and/or place of birth, see Sullivan and Weitz (1984), Gordon
(1982) and United States Federal Trade Commission (1981). On physidans' punitive response to
colleagues who wish to enact reforms, see Savage (1986) and Harrison (1983). Bennetts and Lubic
discuss the difficulties in gaining access to usual-care comparison groups in the evaluation of
freestanding birth centers and conclude, "although there are methodological difficulties in
evaluation of innovative services and programmes, the most persistent problems are primarily
political" (1982: 378). For historical perspectives on the power of obstetricians, see Summey and
Hurst (1986) and Wertz (1983).
�and analysis, which has been largely ignored or discounted by policy makers and medical
providers. If as a nation we are to make substantive improvements in childbearing, we must listen
to these voices. We must go beyond medical domination to include knowledge from groups and
disciplines that have been excluded. We must enable women to define their needs. We must
recognize that childbearing is a natural process and give priority to enhancing this process; we must
deal with exceptions as exceptions rather than as the norm on which an entire system is built.
The Value of Women's Health and Public Health Perspectives
The solution to current problems lies in a shift from the present emphasis on a medical
approach to an approach combining women's health and public health perspectives. From a
women's healih perspective, the needs of women and their children are central. In the best public
health tradition, clinical services are only one component of a broader approach, and clinical
services give priority to primary care. Although many advocates commonly speak of a National
Health Program, what they generally mean is a National Medical Care Program. Our challenge is
to develop and implement a genuine National Health Program, which addresses the conditions of
daily life that influence health, provides universal access to prevention-oriented health care
services, and, when necessary, provides medical care services.
Childbearing policies reflecting women's health and public health perspectives would
promote healthful living conditions. As the National Association for Public Health Policy asserts,
the campaign for a national program of clinical services "must be part of an overall movement for
full employment, higher wages, improved working conditions, decent housing, better education, and
affirmative action to end discrimination in all areas of our national life" (1989). In addition, we
must ensure access to family leave and social supports; availability of nourishing food; control of
environmental hazards; and freedom from the havoc of violence and of alcohol, tobacco, cocaine
and other drugs.
Maternity care services based upon women's and public health perspectives would be
provided routinely by primary caregivers who are trained to understand, promote and sustain
�type of practitioner for another, but the substitution of one system and philosophy of care for
another.
It is important to note that obstetricians and family practitioners can and occasionally do
provide midwifery care, as we describe it below. Unfortunately, however, the circumstances of
medical education and practice and the potential for restrictive and punitive behavior of
1
colleagues severely limit the ability of physicians to deviate from medical standards. ^
Implementation of a midwifery-based maternity care system would offer many important
benefits.
1. Midwifery care is primary care. This care is continuous and involves education, health
promotion, social support, and clinical assessment. Most midwives are strongly committed to
understanding and maintaining normal, healthy states. Basic preventive practices, such as
supporting nourishing diets and breastfeeding, and enhancing the integrity of the childbearing
family, are the foundation of midwifery practice. Midwives address cultural, psychological,
ethical, and political aspects of pregnancy, birth, and parenthood, commensurate with the
meaning and importance of childbearing in the lives of women and their families. Prenatal
care within such a framework is rich, multi-faceted, well-received and conducive to positive
outcomes on many levels.
17
We are not optimistic about the use of family physicians for primary maternity care. Although
we respect and applaud their primary care philosophy, we regret that in their provision of
maternity services, the great majority of family practioners have been obliged to emulate and
practice the specialist model (Brody and Thompson 1981: 978). Additional constraints are
provided by the challenge of incorporating maternity services and of supporting maternity
liability premiums within a general practice. We also respect the primary care philosophy of
nurse-practitioners and their work with childbearing women; we regret, however, that they are
not now trained to provide continuity of care during the critical period of labor, birth and early
postpartum.
16 For examples of physicians who have adopted a frame of reference and attitudes compatible
with midwifery, see Odent (1984) and Sagov et al. (1984). For examples of impediments that
physicians place before reformist colleagues, see Savage (1986) and Harrison (1983).
^ Descriptions of midwifery care include Rothman (1989), Sullivan and Weitz (1988) and
Annandale (1988).
Roger A. Rosenblatt points to an important policy benefit of such a broad and continuous view of
maternal and child health. This view involves "longitudinal responsibility for a series of
�significant, and dramatic, improvements in the health of these most vulnerable women and
infants.
19
4. Midwifery care offers special benefits for virtually all childbearing women. With their
commitment to education, prevention, providing social support and individualized care, and
developing a close relationship with the childbearing woman, midwives provide excellent
care to women who are often considered to be "high-risk" (Reedy 1979). This approach is
well-suited, for example, to supporting a pregnant adolescent, helping a woman with diabetes
maintain a healthy diet, and working with women-who are HIV positive or addicted to drugs.
So-called high-risk women who receive midwifery care consistently attain excellent outcomes,
typically more favorable than those of the general population.
20
(When indicated by
1 9
Midwives have disproportionately served women with demographic characteristics that
have historically been associated with underservice (United States Department of Health and
Human Services 1984). A small areas analysis indicates that U.S. counties with the highest
ratios of nurse-midwives per 100,000 15-to-44-year-old women are low-income areas with small
populations, few hospital beds and high birth rates (Langwell et al. 1980).
On studies assessing the effectiveness of midwives with historically vulnerable women and their
infants, see note 20.
2 0
Midwifery programs for historically vulnerable women have regularly been associated with
physical outcomes superior to those in the local area, state and/or nation. These programs have
served many rural and urban areas in the country and have provided care in hospitals,
freestanding birth centers and homes. See Brucker and Muellner (1985), Mann (1981), Haire (1981),
Burnett et al. (1980), Reid and Morris (1979), Browne and Isaacs (1976), Murdaugh (1976), Meglen
(1972), Levy et al. (1971), Montgomery (1969), Metropolitan Life Insurance Company (1960) and
Laird (1955). One study found similar or better physical outcomes among higher-risk women
receiving midwifery care in a maternity center when compared to matched women receiving usual
care in a tertiary teaching hospital (Baruffi et ai. 1984a). Whether stratified by education, age,
parity, race, or nativity, national birthweight data from 1978 are consistent with the favorable
evaluations of individual midwifery programs: at every strata the percentage of low birthweight
babies is lower for midwives than for all hospital births, physician-attended out-of-hospital
births, and other categories (Dedercq 1984).
Many studies report that groups of women who historically have experienced high rates of
adverse physical outcomes experience rates superior to the mean for the general population when
using midwifery care. These findings suggest that lack of access to appropriate services is a major
and common risk factor for vulnerable women and their infants. Unfortunately, this risk factor has
not been considered in the many studies examiningriskfactors for mothers and infants (Nersesian
1988).
Lisbeth Schorr has written an important book on the distinguishing characteristics of successful
intervention programs for vulnerable children. Within Our Reach identifies general qualities
that predsely describe midwifery care. Successful programs: offer a broad spectrum of services
that transcend conventional professional and bureaucratic boundaries, maintain flexibility and
continuity, offer coherent services that are easy to use, consider people in the context of their
11
�experience with claims. The tremendous magnitude of the difference, however, suggests that
it is genuine and considerable. Midwives' limited experience with legal challenge may be
associated with their tendency to provide more satisfactory communication and greater
continuity of care; to spend more time with women prenatally, during labor and following
birth; to develop a more trusting and personal relationship; to show greater care and respect to
22
women; and to more genuinely implement principles of informed consent.
7. Midwifery care is well-received by childbearing women. Women appreciate padent,
personalized, respectful, non-hierarchical care that addresses many dimensions of our lives
and helps us to take responsibility for our health. Most women welcome midwives'
commitment to principles of informed consent and the opportunity for genuine participation in
decisions about our care. Most of us feel especially comfortable with caregivers who are women
and who are often themselves experienced mothers (Kelly-McCormick 1989; Lazarus 1988b;
Wellish and Root 1987).
23
8. Midwifery care is highly cost-effective. Studies of midwifery care, both in and out of
hospitals, show major cost savingsrelativeto usual care (e.g.. Cherry and Foster 1982; Reid
and Morris 1979). Midwifery fees tend to be lower than physician fees despite the fact that
midwives spend considerably more time with women and give services that may otherwise be
2
provided by an entire team.** An economic assessment comparing a midwifery-based system of
2 2
The Department of Professional Liability of the American College of Obstetricians and
Gynecologists publishes a series of risk management circulars for the association's membership.
These guidelines emphasize such routine attributes of midwifery care as commitment to good
communication and rapport, provision of fully informed consent, and acknowledgment of the
possibility of undesirable outcomes.
23 A nearly four-fold growth in the number of births attended by midwives from 1975 to 1987
(Wegman 1989: 945) is a likely indication of women's appreciation of midwifery care.
Women participating in the National Birth Center Study alsoreportedhigh rates of
satisfaction with their care. Ninety-nine percent of those giving birth in the centers said that
they would recommend the center to friends and 94% said they would use the center in a subsequent
pregnancy. Of those who were transferred to hospitals for their birth, 97% said they would
recommend the center and 83% would use it again (Rooks et al. 1989).
2 4
The Health Insurance Association of America reports that the average physicians' fee for
vaginal birth in 1989 was $1,492, in contrast to $994 for the average fee of midwives (1989).
13
�Netherlands is associated with relatively limited use of costly risk-bearing salvage technologies:
in 1982, for example, when the U.S. cesarean rate was 18.5%, the Dutch rate was 53%.
26
Policy Proposals:
Improved Standards of Living and Systematic Transition to a Midwifery-Based System of Care
We intend to work with other groups to develop the following proposals about childbearing
policy in a national health program:
1. As a society, we should work to enhance the conditions of everyday life that influence the
health of women and their infants. These conditions include economic security; the quality of
education; the availability of family leave and other social supports; the impact of
occupational and environmental hazards; the availability of safe housing and nourishing
food; and the impact of harmful drugs and violence. Short-term policies should specifically
address the effect of these areas on childbearing women and their infants, while long-term
policies should be developed to improve the conditions of everyday life for all citizens. We
must implement a true National Health Program that addresses these primary determinants
of health.
2. We who are taking the leadership for a national health program should establish a task force
to investigate and propose guidelines for systematic transition to a primary maternity care
system. This task force should be composed of leaders who represent the following
perspectives: women's health, childbirth reform, midwifery, and public health, as well as
other health and medical professionals who are committed to a primary care model and are
knowledgeable about the distinctive record of midwifery care. The task force should carefully
consider past and present exemplary models of primary maternity care. In the U5., these
include the Frontier Nursing Service in rural Kentucky; Boston's Tradidonal Childbearing
2 6
On general health policies of the Netherlands, see World Health Organization (1986). On
the Dutch maternity care system, see Smulders (1989), Smulders and Limburg (1988), Miller (1988),
Phaff (1986), Ris (1986), and (Verbrugge 1968). On international cesarean trends, see Notzon et al.
(1987).
15
�provide a broad range of formal and informal health and support services for childbearing
women, mothers and infants. Healthy women who wish to give birth at home must be
supported in this choice. Hospitals and medical caregivers must provide full cooperative
back-up.
5. Vie should emphasize small-scale community-based and -oriented services. This goal should
be a priority when recruiting caregivers, when establishing the location of maternity services,
and when determining the type of care provided. Women who use the services should have
substantial input into the development of policies and programs through participatory
processes for resource allocation and other decisions. We should give special attention to the
development of supportive client-oriented services for women who otherwise lack social
support and have negative, stressful life circumstances.
6. We should develop effective policies lhat commit our national heallh program to a primary
maternity care system. These policies should ensure that midwives are autonomous primary
care practitioners and that specialist and tertiary care back-up are readily available for any
medical problems. Women should be free to choose the caregiver and place where they will
give birth; policies should ensure that all women receive accurate and detailed information
about these choices and that all have access to primary maternity care services. Adequate
funds should be available for widespread public education about the benefits of primary
maternity care, for primary maternity caregiver training programs, and for all primary
maternity care services. Present difficulties in securing reimbursement for these services
should be eliminated. Finally, ongoing mechanisms of accountability must be established to
standardization and rapid processing of childbearing women disregards physiologic patterns of
labor and dehumanizes participants.
Sodal sdence research has consistently identified the great degree to which hospital and dinic
routines and provider interests take precedent over the pregnant and birthing woman's own
situation and preferences in determining the type of care she receives. See Lichtman (1988),
Danziger (1986,1980), Rothman (1983), Shaw (1974), Kovit (1972) and Rosengren and DeVault
(1963).
17
�Appendix A. World Health Organization Policy Statements
On Appropriate Technology, from The Lancet
THE LANCET. AUGUST 24.1985
Informaiion on birth practices in difTerent hospitals, such as rates
of caesarean section, should be available to the public
Research on the structure and numbers of the team attending at
binh should be conducted, at regional, national, and international
levels, consistent with maximising access to appropriate primary
care and maximising normal birth outcomes and improving
perinatal health, cost effectiveness, and the needs and desires of the
community.
World Health Organisation
A P P R O P R I A T E T E C H N O L O G Y FOR B I R T H
In April, the European regional office of the World Health
Organisation, the Pan American Health Organisation, and
the WHO regional office of the Americas held a conference on
appropriate technology for birth. The conference, held in
Fortaleza, Brazil, was attended by over 50 participants
representing midwifery, obstetrics, paediatrics, epidemiology, sociology, psychology, economics, health administration, and "mothers. Careful review of the knowledge of
binh technology led to unanimous adoption of the
recommendations which follow. WHO believes these
recommendations to be relevant to perinatal services
worldwide.
Every woman has therightto proper prenatal care and she
has a central role in - all aspects of this care, including
participation in the pbnnir.g, carrying out, and evaluation of
the care. Social, emotional, and psychological factors are
fundamental in understanding how to provide proper
perinatal care. Birth is a natural and normal process, but even
"no risk pregnancies" can give rise to complications.
Sometimes intervention is required to obtain the best result.
In order for the following recommendations to be viable, a
. thorough transformation of the structure of health services is
required together with modification of staff attitudes and the
redistribution of human and physical resources.
SPECIFIC RECOMMENDATIONS
GENERAL RECOMMENDATIONS
Health ministries should establish specific policies regarding
appropriate binh technology Tor the private and nationalised health
serviees.
Countries should carry out joint surveys to evaluate birth care
technologies.
The whole community shouid be informed of the various
procedures in birth care, so as to enable each woman to choose the
type of birth care she prefers.
The mother and her family should be encouraged to practise selfcare in the perinatal period and develop the understanding of when
•nd what help is required io improve the conditions of pregnancy,
binh, and afterwards.
Women's mutual aid groups offer valuable social support and a
unique opportunity to share mformation about binh.
The health team must foster coherent attitudes to ensure
continuity in the monitoring of binh and the perinatal team should
share a common work philosophy in orrler to ensure that stafT
changes do not jeopardise continuity of care.
Informal perinatal care systems (including traditional birth
attendants) must coexist with the ofTicial system and a collaborative
approach must be mainained for the benefit of the mother. Such
relations, when established in parallel, can be highly eflective.
Professional training should pass on new knowledge of the sodal,
cultural, anthropological, and ethical aspects of birth.
The perinatal team should be jointly motivated to enhance
relationships between mother, child, and family. The work of the
team can be aflectcd by interdisciplinary conflicts, which should be
syitematically explored.
The training of health professionals should include
communication techniques in order to promote sensitive exchange
of information between members of the health team and the
pregnant woman and her family.
The training of professional midwives or binh attendants should
be encouraged. Care during normal pregnancy, binh, and
afterwards should be the duty of this profession.
Technology assessment should involve all those using the
technology, epidemiologists, social scientists, health authorities,
and the women on whom the technology is used.
1 9
The wellbeing of the new mother must be ensured through free
access of a chosen member of her family during binh and
throughout the postnatal period. In addition, the health team must
provide emotional suppon.
Women who give birth in an instimtion must retain their right to
decide about clothing (hers and her baby's), food, disposal of the
placenta, and other culturally significant practices.
The healthy newborn must remain with the mother whenever
possible. Observation of the healthy newborn does not justify
separation from the mother.
Immediate breastfeeding should be encouraged even before the
mother leaves the delivery room.
Countries with some of the lowest perinatal mortality rates in the
world have caesarean section rates of less than 10%. There is no
justification for any region to have a rate higher than 10-15%.
There is no evidence that caesarean section is required after a
previous caesarean section binh. Vaginal deliveries after a caesarean
should normally be encouraged wherever emergency surgical
intervention is available.
Ligation of the fallopian tubes is not an indication for caesarean
section. There are simpler and safer methods for tubal sterilisation.
There is no evidence lhat routine fetal monitoring has a positive
effect on the outcome of pregnancy. Electronic fetal monitoring
should be carried out only in carefully selected cases related to high
perinatal mortality rates and where labour is induced. Research
should investigate the selection of women who might benefit from
fetal monitoring. Meanwhile, national health services should
abstain from purchasing new equipment.
It is recommended that the fetal heart rate be monitored through
auscultation during the first stage of labour, and more frequently
during expulsion.
There is no indication for shaving pubic hair nor for an enema
before delivery.
It is not recommended that the pregnant woman be placed in a
donaj lithotomy position during labour and delivery. Walking
should be encouraged during labour and each woman must freely
decide which position to adopt during delivery.
The perineum should be protected wherever possible. Systematic
use of episiotomy is not justified.
The induction of labour should be reserved for specific medical
indications. No region should have rates of induced labour higher
than 10%.
During delivery,. the routine administration of analgesic or
anaesthedc drugs (not specifically required to correct or prevent any
complication) should be avoided.'
Artificial early rupture of membranes, as a routine process, is not
justifiable.
Funher investigation should evaluate the minimum special
clothing required for those attending birth and the newborn.
IMPLEMENTATION OF RECOMMENDATIONS
The above recommendations acknowledge differences between
various regions and countries. Implementation must be adapted to
these special situations.
Govenunents should determine which departments should
coordinate the assessment of appropriaie binh technology.
Universities, scientific societies, and research groups should all
participate in the assessment of technology.
Financial regulations should discourage indiscriminate use of
technologies.
Obstetric care that criticises technological binh ore and respects
the emotional, psychological, and social aspects of binh should be
CDCOuraged.
�THE LANCliT, DECEMBER 13, 1986
these groups. As one example, breast-feeding support groups in the
communiiy provide a valuable form of information exchange and
suppon among women.
In any country or region existing cultural practices in the period
following birth should berespectedand maintained—unless they
have been proved to be hatmful. Hcttcr communiation between
women and health workers would improve opportunities to
recognise strengths of loal tradiiions, which could then be
disseminated to other women.
Postnatal and Postpartum Care
APPROPRIATE TECHNOLOGY FOLLOWING
BIRTH
A symposium assembled by ihe regional ofTicc for Europe
and the regional office for the Americas of the World Health
Organisation met in Trieste tin O a 7-11 to debate this
subject and to construct recommendations. Earlier
complementary meetings (in Washington, D C , in 1984 and
in Fortaleza, Brazil, in 1985') had discussed how best to
provide care during pregnancy and during birth. T h e
Trieste symposium was composed of about 40 panicipants
HHALTH AND MKDICAL snRvicns
from some 20 countries in Europe and the Americas. Those
present drew their experience and views from careers in:
midwifery, obstetrics, paediatrics, community medicine,
psychology, sociology, epidemiology, economics, health
service administration, international health care, medical
journalism, women's groups, and parenthood.
The
following were among the
symposium's
recommendations, which will be published in full by W H O .
ruiiuc POLICY
Poverty is the greatest threat to the health of the woman and the
infant. In the absence of conccm-il measures to promote social
equity, little improvement can be expected in maternal and infant
mortality and morbidity. Mortality and morbidity rates ore higher
in socially disadvantaged communiiies, which may also receive
much less in the way of formal health care. Thus (a) in the allocation
of resources, nationally and locally, direct spending on health
services may not be given suflicicnt priority; and (b) semces for
healthy women and babies should be organised so lhat those most in
need have access to adequate arc.
The stmcture of health care systems and the way ihcy operate ore
influenced by commercial interests and by the needs and
perspectives of professionals and others who work in them. When
such influences are strong, they must be publicly recognised and, if
necessary, controlled.
The improvement of postnatal nnd postpartum care must be a
collaboration between: parents; health professionals; heallh
plannen; health-care adminisinitnrs; other related sectors;
community groups; policy makers and politicians. Policies and
mechanisms should be developed which will guide decisions about
the are of women and babic*—for example, multidisciplinary
committees on ethics andreviewhoards for the assessment of care.
Communities must examine how far their attitudes and practices
support or obstruct the opportunity for women and babies to
receive the best available care.
The allocation of health careresourcesto intensive life suppon
systems for the newborn should he dctemiincd nationally. 'l"hat
decision must be informed by research findings, socioeconomic
futon, and moral and ethical ainsidcrations. It should be based on
consultation among care providers and rcprescnialivcs of parents
and of the community as a u-hnlc. It should include the
establishment of minimum standards andrequirementsfor stafling.
equipment, and siting nf units for the newborn.
Every woman in employment should have an adequate period of
paid maternity leave before and after childbirth. Social security
systems should not penalise women for motherhood. Women
dwuld also berelievedof unpaid work after childbirth, and home
help services should be available. After binh paid leave should be
provided for the father so that he cm foster arelationshipwith the
baby and support the mother.
Self-help groups should be promoted and funded in local
communities to enable parents to meet the responsibilities of infant
are. Professionals have a duty io be knowledgeable about self-help
groups in the oommunity and ihey should inform parents about
LSCCAM*
t MdnotoBr for binh. Ismtn IW*; ii: -tfc-H.
21
For healthy women and babies, suppon equivalent to that
provided in hospital should be made available to all mothers and
babies at home.
If the mother desires breast-feeding, it should be initiated within
the first hour after birth. Practices concerning breast-feeding should
follow dieresolutionsadopted at the 3-lih World Heallh Assembly
in I9HI.
All parents and infants have therightto be in close contact from
the time of birth. Closeness between mother and infant should be
promoTcttmalhcirairnstanccs, including the period after caesarean
binh or other medial interventions aflccting the woman or infant.
Women and babies should not be separated and should be together
as much as the mother wishes. Rooming-in should be promoted;
and Uumght should be given to abandoning central nurseries for
normal babies. Furthermore involvement of parents in the care of
the unhealthy newborn should be promoted, including the actual
care of the unhealthy infant and panicipation in decisions about
treatment.
Mothers and babies should noi be kept in hospital beyond the
time when they can benefit from funher hospital diagnostic or
therapeutic measures. Ifrestor social or educalional suppon are
needed, they ihould be provided in the home.
Every baby should have its own record from the moment of birth,
which may include data about pregnane)' and binh. 'fhis record, or
at least a copy of it, should be kepi at home by the woman. It would
include data about growth, development, nutrition, immunisation,
and medical history. Il can form a basis for communication among
given of health care and with the woman, l l i e woman should also
have her own heallhrecordin her home. Confldcmiality of these
records must be protected.
PRHVENTION AND SCREENING
All women and newborn infants should receive immunisation
and screening tests in accordance with-the recommendations of
their own countries, whether at home, in a clinic, or in a hospital.
Before screening of women or babies is contemplated, it musl be
evaluated hy random controlled trials, examining not only efficacy
and safety but also psychosocial costs and benefits. Each country
should evaluate therelevanceof particular screening procedures to
iu own panicular needs orresources.'lite means of administration
of vitamin K and the type of eye prophylaxis in the newborn need
funher evaluation. When indicated, immunisation with Anti-D is
recommended for the woman.
The period following birth may be an imponant time for making
family planning advice and services available to both parents. The
person giving such information to women should be someone in
whom they have confidence. In many contexts, the best person
would be a nurse or midwife. Informaiion should be given on a
variety nf contraceptive techniques, so lhat women can make
informed choices.
Eradication of neonatal tetanus it a high priority.
Low birthweight, which correlates strongly with both perinatal
mortality and morbidity, shouldreceivehigh priority for research
into a uses and prevention. Meanwhile, however, some anions
seem toreducethe incidence of low binh weight and other causes of
perinatal mortality and morbidity. Services should be developed
with such actions in mind and ihe public should be fully informed of
the reasons for and importance of these actions, which include:
family planning (to avoid a large number of children and too short
intervals between children); prenatal care to idenufy possible risks
lo the fetus and woman and to treat my diseases or conditions
�Appendix B. International Definition of Midwife*
A midwife is a person who, having been regularly admitted to a midwifery educational
program duly recognized in the country in which it is located, has successfully completed the
prescribed course of studies in midwifery and has acquired the requisite qualifications to be
registered and/or legally licensed to practise midwifery.
She must be able to give the necessary supervision, care and advice to women during pregnancy,
labour and the postpartum period, to conduct deliveries on her own responsibility and to care for
the newborn and the infant. This care includes preventive measures, the detection of abnormal
conditions in mother and child, the procurement of medical assistance and the execution of
emergency measures in the absence of medical help. She has an important task in health
counselling and education, not only for the patients, but also within the family and community.
The work should involve antenatal education and preparation for parenthood, and extends to
certain areas of gynaecology, family planning and child care.
She may practise in hospitals, clinics, health units, domiciliary conditions or in any other
service.
• Adopted by the International Confederation of Midwives and the International Federation of
Gynaecologists and Obstetricians; used by the World Health Organization.
23
�among midwives." Because of their ability and past experience in providing such a
comprehensive approach, nurse-midwives have demonstrated that they can
"dramatically become part of the solution to what is a national disgrace," Dr.
Richmond said.
'TO THAT END, the former surgeon general exhorted nurse-midwives ... to recognize
their invaluable contributions in improving the health status of women, especially
minority women, as well as infants.
T o a large degree, it lies in your power to realign the national and local debate to
include issues of social justice, equity, and compassion. Perhaps more than any other
health profession, midwifery has been able to inject human values into the provision
of health care."
[Source: Carol Cancila, Nurse-midwives can help cut infant mortality rate,
American Medical News, April 11, 1986, p. 16.]
As an element of its policy statement on appropriate birth technologies for all world nations,
the World Health Organisation recommends:
The training of professional midwives or birth attendants should be encouraged. Care
during normal pregnancy, birth, and afterwards should be the duty of this profession.
[Source: World Health Organisation. Appropriate technology for birth. The Lancet
August 24,1985.1
In its handbook on health-promoting, woman-centered health care, the Boston Women's
Health Book Collective writes (and emphasizes by using capital letters):
STUDIES OF NURSE-MIDWIFERY PRACTICE, PAST AND PRESENT,
CONSISTENTLY SHOW OUTCOMES AS GOOD OR BETTER THAN PHYSICIAN
OUTCOMES, WITH FEWER FORCEPS DELIVERIES, CESAREAN SECTIONS AND
EPISIOTOMIES, FEWER STILLBIRTHS AND LOW-BIRTH-WEIGHT BABIES.
[Source: The Boston Women's Health Book Collective. The New Our Bodies,
Ourselves. New York: Simon & Schuster, Inc., 1984, p. 337.]
In its Resolution on Midwifery, the International Childbirth Education Association states:
Whereas,
Pregnancy and birth are natural, healthy processes and major life events for most
women.
Midwifery care has been demonstrated to be safe, satisfying, and cost-effective for
uncomplicated births.
Midwifery care has been demonstrated to improve birth outcomes and reduce the
number of premature and low-birthweight babies,....
Midwifery care is individualized to meet each woman's health, social, and
personal needs and to provide continuity of care, ....
25
�Similarly, in its report to Congress on ways to improve pregnancy outcomes nationally, the
General Accounting Office recognizes the the special contribution of midwifery care in inner
cities and rural areas, and recommends:
Encourage greater use of nurse-midwife/obstetrician teams.
[Source: United States General Accounting Office. Better Management and More
Resources Needed to Strengthen Federal Efforts to Improve Pregnancy Outcome.
Washington, DC: U.S. Government Printing Office, 1980.]
In its study of ways to increase participation in prenatal care, the Institute of Medicine
recommends:
increased use of certified nurse-midwives (CNMs) state laws and physidans
themselves should support hospital privileges for CNMs and collaboration between
physicians and nurse-midwives ....
[Source: Institute of Medicine, Division of Health Promotion and Disease Prevention,
Committee to Study Outreach for Prenatal Care. Prenatal Care: Reaching Mothers,
Reaching Infants. Sarah S. Brown, editor. Washington, DC: National Academy
Press, 1988, p. 144.]
In its policy statement expressing concern about negative consequences of the high rate of
medically unnecessary cesarean section births, the American Public Health Assodadon
encourages as a preventive strategy:
expanded use of mid-wives and non-hospital birth settings acceptable to state
regulatory bodies for appropriately screened childbearing families and the education
of the public thereof.
[Source: Policy Statement 8904: Reduction of unnecessary cesarean section births.
American Journal of Public Health 80,2 (1990) p. 226.]
Lessonsfromthe European Experience
In his study of the lessons we in the United States might learn from European maternity care
systems, C. Arden Miller (national maternal and child health leader, former president of the
American Public Health Association, pediatrician) recommends for US. policy:
The role of midwives deserves special attention. They play a crudal role in the
maternity care in Europe, especially as members of hospital-based maternity teams.
Midwives are known to render services that are of high quality, economy and
comprehensiveness—attributes that do not aways characterize obstetric care.
[Source: Miller, C. Arden. Maternal Health and Infant Survival: An Analysis of
Medical and Social Services to Pregnant Women, Newborns and their Families in Ten
European Countries, with Implications for Policy and Practice in the United States.
Washington, DC: National Center for Clinical Infant Programs, 1987, p. 30.]
27
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�
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Description
An account of the resource
<p>This collection consists of records related to Hillary Rodham Clinton's Health Care Reform Files, 1993-1996. First Lady Hillary Rodham Clinton served as the Chair of the President's Task Force on National Health Care Reform. The files contain reports, memoranda, correspondence, schedules, and news clippings. These materials discuss topics such as the proposed health care plan, the need for health care reform, benefits packages, Medicare, Medicaid, events in support of the Administration's plan, and other health care reform proposals. Furthermore, this material includes draft reports from the White House Health Care Interdepartmental Working Group, formed to advise the Health Care Task Force on the reform plan.</p>
<p>This collection is divided into two seperate segments. Click here for records from:<br /><a href="http://clinton.presidentiallibraries.us/items/browse?advanced%5B0%5D%5Belement_id%5D=43&advanced%5B0%5D%5Btype%5D=is+exactly&advanced%5B0%5D%5Bterms%5D=2006-0810-F+Segment+1"><strong>Segment One</strong></a> <br /><a href="http://clinton.presidentiallibraries.us/items/browse?advanced%5B0%5D%5Belement_id%5D=43&advanced%5B0%5D%5Btype%5D=is+exactly&advanced%5B0%5D%5Bterms%5D=2006-0810-F+Segment+2"><strong>Segment Two</strong></a></p>
Provenance
A statement of any changes in ownership and custody of the resource since its creation that are significant for its authenticity, integrity, and interpretation. The statement may include a description of any changes successive custodians made to the resource.
Clinton Presidential Records
Publisher
An entity responsible for making the resource available
William J. Clinton Presidential Library & Museum
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Original Format
The type of object, such as painting, sculpture, paper, photo, and additional data
Paper
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Briefing Book on Reproductive Health Services [7]
Creator
An entity primarily responsible for making the resource
Health Care Task Force
General Files
Identifier
An unambiguous reference to the resource within a given context
2006-0810-F Segment 1
Is Part Of
A related resource in which the described resource is physically or logically included.
Box 58
<a href="http://clinton.presidentiallibraries.us/items/show/36144" target="_blank">Collection Finding Aid</a>
<a href="https://catalog.archives.gov/id/12090749" target="_blank">National Archives Catalog Description</a>
Provenance
A statement of any changes in ownership and custody of the resource since its creation that are significant for its authenticity, integrity, and interpretation. The statement may include a description of any changes successive custodians made to the resource.
Clinton Presidential Records: White House Staff and Office Files
Publisher
An entity responsible for making the resource available
William J. Clinton Presidential Library & Museum
Format
The file format, physical medium, or dimensions of the resource
Adobe Acrobat Document
Medium
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Preservation-Reproduction-Reference
Date Created
Date of creation of the resource.
5/5/2015
Source
A related resource from which the described resource is derived
42-t-2194630-20060810F-Seg1-058-011-2015
12090749