A Health Agenda for Children
Frederick C. Robbins
With the presidential campaign moving into high gear, candidates are offering proposals designed to win support from middle class voters, older voters, unemployed voters, Southern voters, New England voters, ethnic voters and many others.
What may be needed most of all, however, is an agenda to help those who cannot vote: our children. Their declining status in society has been oft noted and widely decried, yet they claim a diminishing share of our country's resources. Federal spending on the elderly increased 52 percent during the past decade while spending on children declined 4 percent. One in four children under age 6 lives in poverty.
As one who helped develop childhood vaccines, what especially disturbs me is that so many American children now suffer needlessly from preventable health problems. How can a society that claims to care deeply about its children excuse the recent resurgence of measles or unnecessarily high rates of infant mortality? Our platitudes about loving children are especially hollow when solutions of proven value go unused. We know the following measures all can improve children's health substantially, at reasonable cost:
• Provide every expectant mother with prenatal care. The United States ranks 24th among the world's nations for infant mortality; one baby dies in every 100 live births. Studies by the Institute of Medicine of the National Academy of
Sciences and other organizations have shown that incidents of low birthweight and neonatal mortality can be reduced with comprehensive prenatal care. Providing basic care to expectant mothers is less glamorous than rushing in later with advanced technology to rescue premature infants, but it saves money, lives and heartache. This is especially true in cases where a pregnancy is complicated by the mother's diabetes, poor diet, alcoholism, drug abuse, age or other risk factors. Every expectant mother should be provided with prenatal care.
• Vaccinate all children. Vaccination is one of the most cost-effective public health measures. Immunization for diphtheria, whooping cough, tetanus, polio, hemophilus B infection (the cause of meningitis and severe respiratory infection) and hepatitis B should be administered early in life. Although some vaccines have been linked to occasional adverse side effects, their benefits outweigh the risks. In some populations in the United States as many as half of all children have not been fully vaccinated. This rate improves by school age, since all states require children to be immunized before enrolling, but waiting until age 5 is too late. Children need to be vaccinated earlier, and universally.
• Enroll all eligible children in Head Start programs. President Bush recently announced plans to expand Head Start. That is welcome news, but many children still will be excluded from this worthy program, which helps get disadvantaged children ready for school. Fewer than half of the children who could profit from these services now receive them. The long-term benefits more than justify making them available to all who need them.
Other measures, such as providing health care and counseling in schools, also have been shown to be effective. The Special Supplemental Food Program for Women, Infants and Children (WIC) has succeeded in improving the nutritional status of children and pregnant women substantially. Yet the WIC program now reaches only a fraction of those who need it. Another critical need is to provide adequate health insurance to children, who now account for a disproportionate share of our nation's medically uninsured. In 1989 children comprised 29 percent of the population but accounted for 36 percent of those without health insurance.
"Children are our future" may be a cliche but also is a truism. If we do not act to improve the health of America's children, that future is threatened. As the campaign proceeds and the merits of various health care proposals are debated, we are sure to hear the pleas not only of the candidates but of a great assortment of special interest groups. Somewhere in that din, I hope more voters will be asking, "What about our children?"
March 1, 1992
Frederick C. Robbins, winner of the Nobel Prize for research that led to the development of the polio vaccine, is University Professor Emeritus at Case Western Reserve University School of Medicine in Cleveland.
* * *
Childhood Vaccines: The Parent's Responsibility
Harvey V. Fineberg
Parents of young children know the dilemma. Their local school probably requires the children to receive recommended vaccinations, but reports have linked some of the vaccinations to adverse reactions.
During the coming year, millions of families will wonder what to do. Having chaired the scientific committee that produced one of the most widely publicized studies of the DPT and rubella vaccines, I would urge virtually all parents to have their children receive both vaccines, as well as other recommended vaccines — against measles and polio, for example.
It is true that a causal relation exists between the DPT and rubella vaccines and certain health problems. Our committee of the Institute of Medicine of the National Acad-
emy of Sciences reported that about one in 50,000 children who receive the DPT vaccine suffers from anaphylaxis, a potentially life-threatening allergic reaction. A much higher percentage — as many as six per 100 children — cry inconsolably for several hours shortly after being vaccinated. Weaker evidence suggests a causal relation between the DPT vaccine and two conditions — shock and acute encephalopathy, a brain disorder.
In other words, the DPT vaccine does have the potential to harm some children. But the risks are much smaller than those of the diseases it prevents. The DPT injection gets its name from three such diseases: diphtheria, pertussis and tetanus. All three are potentially deadly and not to be taken lightly. The threat of these diseases far exceeds the potential dangers of the vaccines.
The vaccine for pertussis, or whooping cough, has been the most controversial. Pertussis is a very serious respiratory infection in which the patient typically suffers from a frequent, intensive cough. It can lead to major health complications and death. Although the incidence of pertussis has declined dramatically in the United States since vaccination became widespread, it remains a major cause of child mortality in the developing world.
The number of cases also skyrocketed in Britain and Japan after parents there stopped vaccinating their children because of worries about adverse reactions. In Britain more than 100,000 cases and 36 deaths were reported after the vaccination rate dropped from 80 percent to less than 30 percent.
The continuing problem with measles in our own country illustrates the need to remain vigilant about providing childhood vaccinations. More than half the children in some U.S. communities today have not been vaccinated for measles. In 1989 about 18,000 cases of measles were reported in the United States. In 1990 the total climbed to about 28,000 reported cases and nearly 100 deaths. A decline in vaccination rates must not be allowed to occur with the DPT and rubella vaccines.
Like the DPT vaccine, the shot for rubella, or German measles, has drawbacks. It appears to cause acute and some-
times long-term arthritis in a minority of patients, especially if those being vaccinated are young adults. Yet rubella, too, poses serious threats. Maternal exposure to it during pregnancy can result in numerous congenital health problems for the infant. Protecting young children against this threat is well worth the risk, particularly since side effects of the vaccine are so rare among younger patients.
These vaccines are very good but imperfect. Research into the development of even safer vaccines should continue, but parents can use existing vaccines with confidence that they are doing the right thing for their children.
Parents do need to keep their eyes open to potential problems. Pediatricians should be informed if a child is not feeling well on the day of a planned vaccination; the shots may be postponed. For children who receive the vaccines, some crying is normal. But any signs of swelling or difficulty breathing should prompt a fast call to a physician. Another danger sign is lethargy or difficulty in awakening.
Five years ago the federal government established a program to provide compensation for those children who do suffer severe reactions. Since then, there has been a growing backlog of cases. These families have suffered real tragedies, and the very least they deserve is a faster resolution of their cases.
Their misfortune, however, does not change the fact that the vaccines are saving many more lives than they harm. As one who helped carry out a comprehensive evaluation of their risks, I would not hesitate to urge my own family and friends to get their children vaccinated.
December 29, 1991
Harvey V. Fineberg, dean of the Harvard School of Public Health, chaired a committee of the Institute of Medicine of the National Academy of Sciences that reviewed the adverse consequences of the DPT and rubella vaccines.
* * *
The Neglected Mental Health Problems of Adolescents
John J. Conger
From the new television show ''Beverly Hills 90210'' to movies like "Bill and Ted's Bogus Journey," Americans enjoy laughing about the problems of adolescents. But growing up is not funny for millions of American teenagers who suffer from depression, schizophrenia, drug abuse, anorexia and other serious mental health problems.
The suicide rate among older adolescents has tripled since 1950. The incidence of major depressive disorders among adolescents has risen. In a recent national survey of eighth-and tenth-grade students, 15 percent of the boys and a staggering 34 percent of the girls reported that they often felt sad and hopeless.
This is not to say that emotional turmoil is the norm for American adolescents. Although this period of life has long been recognized for its vulnerability, the great majority of adolescents manage to make the transition to adulthood without major emotional upheaval. But epidemiological studies do indicate that about one in nine suffers from clinically recognizable disorders during any one year.
Despite the magnitude of the problem, adolescents are one of the most poorly served population groups in terms of their mental health needs. Deficiencies extend from research and prevention to social, vocational and clinical services.
Relatively little attention has been given to the differences in mental health problems of older boys and girls. For example, adolescent girls are at much greater risk for eating disorders like anorexia and bulimia. Male adolescents outnumber females in completed suicides, but attempted suicides are more common among females. Although depressive disorders are more frequent among boys than girls before puberty, the reverse is true after puberty. Smoking has decreased dramatically among boys but far less among girls.
What accounts for these differences? Some theorists attribute much of the disparity to biologically based differ-
ences in such characteristics as aggressiveness, interpersonal styles, sexual maturation and physical strength. However, biology clearly is not the whole story; differences in how boys and girls are socialized also matter.
For instance, the transition from childhood to adolescence generally is more complex for girls than for boys. Adolescent girls still tend to receive mixed messages about sexuality, vocational aspirations and appropriate behavior. More of what is expected of boys in terms of physical and sexual development or academic, social and vocational expectations represents a continuation of existing trends. For girls, changing expectations often are more abrupt.
The influence on mental health of these factors, both biological and social, still are poorly understood by researchers. Our ignorance about them is tying our hands in efforts to prevent or more effectively treat drug abuse, eating disorders, crime and delinquency, mental and emotional disturbances, and other adolescent problems. It also leads to a
great deal of heartache for families. Successful efforts at prevention during these years could yield lifelong benefits.
Until recently, research on adolescent development lagged far behind studies of both younger children and adults. Fortunately, the quantity and quality of developmental research on adolescence has increased significantly in the past decade.
No amount of progress in research, however, will help adolescents avoid mental and addictive disorders unless there is a similar increase in preventive programs and treatment services that put research findings into action. Despite repeated protestations of concern for our children, we are failing miserably as a country to begin to meet their needs. The situation is growing worse, not better. Stresses on adolescents are multiplying even as federal, state and other support for basic mental health and other vital services declines.
Ironically, some adolescents receive expensive treatment, such as hospitalization, while many others remain underserved or not served at all. Because adolescent psychiatric centers are among the most profitable sectors of a financially pressed hospital industry, many centers are marketing their services through television commercials and other ads. Some of these centers offer excellent treatment. But too many adolescents are being hospitalized inappropriately. Meanwhile, increasing numbers of young people who truly need high-quality hospitalization or residential care, but lack the financial resources, are denied treatment.
Our society must go beyond political rhetoric and make a far more serious commitment than it has shown to date to meeting the needs of its children and adolescents. Otherwise, the benefits of even the most imaginative research, prevention and treatment programs will be limited, at best.
August 18, 1991
John A. Conger is professor emeritus of clinical psychology and psychiatry at University of Colorado Health Sciences Center.
* * *
People's Health, Public Health
Steven A. Schroeder
Health care is emerging as a major issue, but a big problem with the debate so far has been that people are talking too much about medicine. We should be talking more about public health, which is quite a different question and arguably a more important one.
Medical care is targeted at individual patients; public health deals with the population as a whole. If we finally are getting serious about restructuring our health care system, we should be asking how to help the most people.
The best way to reduce premature mortality from heart disease, cancer, suicide, stroke, injuries, AIDS and many other leading causes of death is to combine traditional medical interventions for individual patients with strategies aimed at society generally.
Although the United States spends more on health care than does any other country, our health indices — such as infant mortality and life expectancy — consistently lag behind those of our economic peers. Put simply, our system does not provide adequate value for the money.
In many countries whose statistics we envy, public health measures are seen as important national health strategies. Tough drunk-driving and gun control laws or contraception and sex education to prevent unwanted pregnancies all are used effectively. In the United States we lack the will to intervene as effectively with preventive measures aimed at populations as we do with measures focused on treatment for individuals.
An important exception is our response to cigarette smoking. Indeed, smoking in North America has declined more than in Western Europe. But this progress has come about in large part from spontaneous citizen action supported by the remarkable leadership of our nation's Surgeons General, from Luther Terry to Julius Richmond to Everett Koop, three men who had the will to promote public health strategies.
The schism between medicine and public health must be healed, but doing so will be especially difficult in the United States. In our country, public health is associated with government and citizens do not now seem to trust that government, or even to respect it.
In recent times, three successful politicians from different parties and very different viewpoints — George Wallace, Jimmy Carter and Ronald Reagan — ran for the nation's highest office on the platform that government is the enemy. Many members of Congress and officials from state and local governments are doing the same. In no other nation is the public health enterprise so identified with unpopular government for which the public is reluctant to pay. This reaction is so strong and reflexive that even a public program that would have provided potentially great benefits — the Medicare catastrophic coverage legislation — was defeated, at least in part, by the very people it would have helped.
A report of the Institute of Medicine of the National Academy of Sciences noted three years ago that millions of Americans would benefit if the nation began taking public health more seriously. That is even more true today; government and the academic community should take the lead in making it happen.
The federal government, for instance, only recently has begun to resolve such contradictions as one agency calling for more generalist and fewer specialist physicians, while another agency pays doctors with incentives that favor specialism over generalism.
At the nation's 126 medical schools, departments of preventive, social, community, or environmental medicine generally are poorly endowed and accorded low status. Nor is there much contact with public health faculty and researchers. Medical schools should expand their curricula and begin teaching not only how to treat low-birthweight babies, but also how to bring about the prenatal care and community services that lead to healthier births. In addition to treating trauma victims, perhaps young surgeons should consider ways of preventing homicides and motor vehicle accidents.
Many individual practitioners still may choose to spend most of their time on either clinical medicine or public
health, but the gulf between the two approaches should not be so wide. And if we truly want to improve our ailing health care system, society as a whole needs to bridge this gulf as well. The cures we seek are not to be found only in doctors' offices.
December 1, 1991
Steven A. Schroeder is president of the Robert Wood Johnson Foundation.
* * *
The States and Health Care Innovation
Molly Joel Coye
Momentum is growing to overhaul the country's costly and inadequate health care system, but what should take its place? Much attention has been given to systems in other countries, notably Canada, but we should not overlook some intriguing and successful alternatives closer to home.
Many states have experimented with approaches that might be adapted nationally:
Last year, Hawaii became the first political jurisdiction in the country to offer universal access to health care. It uses a combination of employer-mandated and state-subsidized insurance.
A year earlier, Massachusetts began implementing legislation requiring employers to "play or pay" — to provide health insurance or pay into a state fund for the uninsured. The plan now appears to be stalled.
The state of Washington subsidizes enrollment in pri-
vate health maintenance plans for more than 18,500 of the state's uninsured poor.
For the past decade, New Jersey has reimbursed hospitals for the full cost of care provided to uninsured patients.
In all, at least 28 states have developed programs to expand health insurance coverage or to improve access to care for the uninsured. These experiments provide a valuable laboratory to learn about approaches that might relieve a national system straining under the weight of 33 million people without health insurance, besieged hospital emergency rooms, soaring medical care costs and a myriad of other problems.
One approach employed by states has been to "tax" insured hospital patients to pay for those patients who lack health insurance and cannot pay their bills. Private health insurers agree to subsidize this uncompensated care in exchange for hospitals allowing the state to regulate their prices. This approach has dramatically relieved the economic difficulties of many urban hospitals and enabled more people to obtain hospital-based services. But employers who provide health insurance complain that they are paying for those who don't. And since only the hospitals — not the physicians — are reimbursed, many physicians are reluctant to continue providing free care as the number of uninsured patients mounts. A related problem is that uninsured patients come to hospitals for routine outpatient care that could be provided in much less costly settings.
A second approach has been to expand Medicaid programs, which provide a federal match for state funds used for hospital, physician, and other medical services for poor women, children, the disabled and the elderly. This approach is politically attractive because it targets "deserving" populations, and it is safe because the Medicaid bureaucracy is a known entity. Yet there are wide gaps in Medicaid coverage, and the persistently low reimbursement rates in most states have resulted in a severe shortage of physicians willing to serve Medicaid clients.
A third category of experiments involves state subsidies for private insurance. Since three-fourths of the total unin-
sured population comes from workers and their families, states have tried to make private insurance more affordable for both small employers and workers. One way has been to help small companies join together for insurance purposes, since rates can drop by as much as 20 percent as the size of the "risk pool" increases. Another idea has been to target family dependents not covered by health insurance plans. Some of these efforts have worked well, but it will be difficult to broaden them to cover large numbers of the uninsured without a great deal more money.
Finally, since 1974 Hawaii has required employers to offer a basic package of health benefits at a controlled price and to purchase health insurance for all employees. Mandated health insurance forces small employers to "pay their share" and avoids tapping state treasuries, but remains controversial because of the potential impacts on small businesses and on employment itself.
None of these four general approaches has emerged as the consensus candidate for a national plan. All have advantages and drawbacks. But the states are far ahead of the federal government in moving beyond rhetoric to see what really works. Their efforts deserve study — and support. Federal agencies should provide funding and technical assistance to help states evaluate these efforts and to experiment more broadly.
Once again, the states are our best laboratory. Some are engaging the health care issue with courage and vision, and serving their own citizens admirably while offering the nation a wealth of valuable experience.
July 28, 1991
Molly Joel Coye is director of the Department of Health Services for California. This article is adapted from a longer version in the Summer 1991 edition of Issues in Science and Technology.
* * *
Our Disabled View of Disability
Alvin R. Tarlov
When athlete Bo Jackson or singer Gloria Estefan suffers a disabling injury, the nation follows their rehabilitation anxiously. Why, then, are we doing such a poor job of helping 35 million other Americans with disabling conditions?
That's one of every seven Americans, making disability a problem that affects every neighborhood and family. Over a 75-year life span, the average American spends 13 years with impairments that interfere with normal activities. The cost to the nation in medical treatment, income support to replace lost earnings, and rehabilitation services is more than $170 billion annually.
That is an immense toll. For the most part, it also is a preventable one. I chaired a committee of the Institute of Medicine of the National Academy of Sciences that recently formulated a national agenda for preventing disability. We found that millions of disabilities could be prevented or made far less disabling. The problem is not primarily medical, although improved medical care is required. Rather it is our collective complacency about allowing some conditions to progress needlessly to disabilities.
Disability is the gap between a person's capability and the demands or expectations of society. For too long we have viewed the former with resignation and the latter as beyond control. As a humane society that celebrates individualism in human beings and seeks to avoid suffering, it is a view we must change.
Most conditions that lead to disability are preventable. They include premature birth, malnutrition, social and educational deprivation in childhood, automobile crashes and other injuries, violence, alcohol and other drug abuse, and chronic diseases. When these conditions do occur, the resultant physical or mental impairment often can be reversed or minimized by prompt medical care and rehabilitative services. Even if the impairment becomes a permanent functional limitation, it need not prevent someone from work-
ing and participating fully in family and social life. But training, assistive devices, transportation, housing and adaptable workplaces are essential.
Consider stroke, which often leads to disability. Among the causes of stroke are lack of physical fitness, overeating, stress and failure to treat hypertension. All of these factors can be ameliorated, as can many causes of heart disease, respiratory problems, hearing loss and other disabling conditions.
Or think about the 1.3 million people who sustain head injuries each year. Many are teenage males involved in car crashes, falls or violence. For many of them, emergency care is too slow, rehabilitation services are inadequate, and long-term follow-up assistance is lacking to help the young men re-enter a full life.
Physicians and allied health professionals alone cannot solve these problems, although their roles should be expanded. To prevent so many Americans from slipping into dependency, the rest of society, including lawmakers, highway designers, employers, social workers, neighborhood organizations and others, also must get involved.
Insurance policies, for those having them, generally cover rehabilitation services only in acute-care hospitals, and only for the length of the hospital stay or for a month or two afterward. Coverage ends when hospitalization is completed and the condition has stabilized — just when post-acute rehabilitation should begin for many traumatic injuries and chronic conditions.
An elderly person who needs a lifting device to get into a car generally cannot get one through Medicare, which deems this and many other kinds of medical equipment as "convenience items." Incontinence pads are "non-reusable supplies." For want of a ride or out of fear of incontinence, some elderly people lose their mobility.
The Americans With Disabilities Act passed last year was a historic accomplishment, prohibiting discrimination against people with disabilities in hiring, transportation and other activities. But the greater challenge remains. We must prevent the injuries, birth defects and other conditions that often lead to disabilities, and deter existing conditions from
progressing to the point of disability. When impairments do occur, we must strive to overcome them — not only with better medical care but with social services, job training, and much more to promote independence and improve the quality of life.
As many as two of every three disabilities could be prevented through disease and injury control, better health services and other initiatives. Millions of Americans now are disabled simply because we lack the will for prevention.
June 2, 1991
Alvin R. Tarlov is senior scientist at The Health Institute of the New England Medical Center and a professor of public health at Harvard University.
* * *
The Deadly Threat of Emerging Infections
Joshua Lederberg and Robert E. Shope
Most Americans wrongly view acute infectious diseases as a problem of the past. Actually, the danger posed by infectious diseases remains very real. We are likely to face deadly threats from new diseases and from the re-emergence of old ones. Our public health system needs to do much more to protect against these threats.
The AIDS epidemic illustrates how quickly an unknown disease can emerge to wreak havoc. Within a few years, it became one of the most urgent problems of our time.
In little more than a decade, meanwhile, the number of cases of Lyme disease reported each year to the Centers for Disease Control (CDC) has grown from a handful to more than 9,000.
Public health officials also are battling new virulent and drug-resistant strains of tuberculosis and malaria, and new forms of streptococcal bacteria.
We chaired a committee of infectious disease experts convened by the Institute of Medicine of the National Academy of Sciences. Its members agreed unanimously in a recent report that the threat from these and other infectious diseases is growing, posing serious challenges to our citizens.
Many factors account for this. Modern forms of transportation help microbes move quickly around the globe. Suburban development and reforestation of farmland in the United States and expanding human populations and deforestation elsewhere bring people into closer proximity with pests and other animals that transmit the diseases. People around the world who suffer from the diseases often have primitive or nonexistent medical attention. Most important, many mosquitoes have developed resistance to pesticides, and the disease organisms themselves have become resistant to drugs.
To protect ourselves, we must do several things. First, we need a much better surveillance system to detect unusual clusters of disease and track outbreaks, both in the United States and abroad. Improved surveillance also can help us understand why a disease has emerged. Without it, we are fighting blind. Our obliviousness to an increase in tuberculosis in New York City in the late 1970s, for instance, helped that disease re-emerge into a major menace today.
The CDC or some other federal coordinating body must expand current surveillance efforts. For example, the CDC needs the resources to do a better job of monitoring infections acquired in hospitals. One in 20 patients in U.S. hospitals, or 2 million people a year, pick up such infections, and 20,000 die from them. The U.S. Public Health Service should develop a more comprehensive data base that enables doctors to share relevant information quickly.
Second, we need a new arsenal of drugs, vaccines and pesticides. The United States should stockpile existing vaccines, increase its ''surge capacity'' to expand vaccine production quickly, and provide new incentives for manufacturers to undertake innovative approaches to vaccine
development. We also need pesticides that are more effective and environmentally acceptable to control the insects and other creatures involved in public health emergencies.
A third need is to raise the level of informed, professional concern. Primary care physicians are the first line of defense against infectious diseases, but many of them are ill-informed about exotic and emergent diseases. We need more alertness, more research, more training in public health and related disciplines, and more education to help ordinary people protect themselves.
The medical community, political officials and ordinary Americans need a wake-up call. Some of the efforts we recommend require additional spending — an unpopular theme today. Yet these costs are far less than the potential consequences of inaction. Every dollar spent on tuberculosis prevention and control in the United States results in a savings of at least $3 to $4 in treatment. Influenza pandemics in 1957 and 1968 produced an economic burden of $26.8 billion. The AIDS epidemic is likely to cost much more.
Although we do not know where the next microbe or virus will appear, or how it will make us sick, we know that new outbreaks are certain. Unless we become more vigilant, some of these outbreaks could become new deadly epidemics, outdoing even today's AIDS crisis or the influenza pandemic that killed 20 million people worldwide after World War I.
November 22, 1992
Joshua Lederberg, a Nobel laureate, is University Professor and Sackler Foundation Scholar at Rockefeller University in New York.
Robert E. Shope is professor of epidemiology and director of the Yale Arbovirus Research Unit at Yale University School of Medicine.
* * *
Taking Women's Health Problems Seriously
Mary Lake Polan
Female baby boomers are entering the doorway of middle age. One thing that many of them can look forward to is fibroid uterine tumors, the major cause of hysterectomy in this country. Many others already have endometriosis, a disease that can cause crippling pain and infertility.
Both ailments are so common as to be considered "garden variety" problems. Yet they cause American women untold hours of misery. The medical causes remain obscure; cures are elusive.
When it comes to health problems like these involving obstetrics and gynecology, our lack of knowledge is enormous. Why are babies born prematurely? Why have ectopic pregnancies, those outside the uterus, increased every year since 1970, with a fatality rate of 42 per 1,000 cases? Why hasn't our understanding of sexually transmitted diseases like herpes, genital warts and AIDS caught up with the sexual revolution?
Why? Because our effort to find answers has been halfhearted and inadequate. I served recently on a committee of the Institute of Medicine of the National Academy of Sciences that examined research at academic departments of obstetrics and gynecology across the country. We found that only a few are providing a research environment as vibrant as one finds for AIDS, heart disease, Alzheimer's and other health problems. Women's health issues are being consistently devalued.
Faculty members in OB/GYN departments are carrying out significantly less research than those in other medical departments. Their research proposals are much less likely to receive funding from the National Institutes of Health.
This lack of scientific inquiry has a direct impact on clinicians such as the obstetrician who monitors a young pregnant woman's blood pressure and discovers that it is elevated, signaling the onset of pre-eclampsia. The obstetrician
worries about her condition and that of the fetus. Is the fetus growing normally? Is there adequate fluid surrounding the fetus in the uterus?
Researchers could help that obstetrician learn why preeclampsia occurs and how to help both mother and child. Instead, too many fragile, growth-retarded babies continue to be born from the condition.
Another example is uterine fibroids. Also called a myoma or leiomyoma, a fibroid is a single muscle cell that grows and divides to form a benign muscle tumor in the middle of the uterus. It is a common occurrence. Fibroids grow slowly and unnoticed until they start causing pain or, more seriously, heavy and frequent bleeding. Sometimes they become so large that they resemble a pregnancy, causing bowel and bladder symptoms. Although not malignant, fibroids may cause so much pain and bleeding that a hysterectomy is necessary.
Scientists do not know why that single muscle cell begins to grow into a fibroid, much less what to do about it. The same is true for a multitude of other OB/GYN problems which, beyond their human toll, cost billions of dollars a year.
Research to answer these questions requires qualified researchers. Now there's a shortage. Those in positions of leadership need to provide more training and support to encourage bright young OB-GYNs to pursue research careers.
Women represent nearly half of all OB/GYN residents and face special obstacles in choosing the laboratory over clinical practice. The problems include coping with pregnancy and childbirth during crucial early faculty years, isolation from traditional support networks and a dearth of female role models. Providing mentors, flexible work arrangements or extended time to gain tenure could ease these pressures. Also needed is more government-sponsored support of OB/GYN research. Because of social and ethical associations with abortion and other controversies, reproductive health issues have become political pariahs and been neglected in NIH research budgets. The women of this country have been the losers. A greater commitment is needed not only from government but also from private industry.
Our committee prepared a list of research initiatives that would go a long way toward correcting the current sorry state of affairs. The list covers menopause, ovarian and uterine cancer, infertility, genetic development, child bearing, contraception and other issues that collectively affect almost every woman in the United States. One would think that's a large enough group of people for these health problems to start getting the attention they deserve.
June 28, 1992
Mary Lake Polan is professor and chair, department of obstetrics and gynecology, Stanford University Medical School.
* * *
Pregnant Women, Newborns and AIDS
Marie C. McCormick
By the end of this year, health experts expect there to be a new entry among the five leading causes of death for women of reproductive age in the United States: AIDS. And because women can transmit the disease to their newborns, AIDS deaths also are increasing among young children.
More than 14,000 cases of AIDS among women were reported as of October in this country. The large majority of women with AIDS are between the ages of 15 and 44, which helps explain the increase in the number of children born infected with HIV, the virus that causes AIDS.
Society must act decisively to prevent additional suffering from AIDS in these new populations. But one thing we should not do, and which some health experts have suggested, is mandate routine screening of all pregnant women and newborns for HIV.
Not that screening is bad; it can be extraordinarily valuable in identifying patients who need treatment. Pregnant women infected with HIV who have severely depressed immune systems can benefit from current AIDS therapies. Women who learn they are infected also can make more informed reproductive choices.
So the problem is not "screening" but "routine." I recently chaired a committee of the Institute of Medicine of the National Academy of Sciences that examined HIV screening of pregnant women and newborns. We concluded that the HIV test is unlike most routine medical tests because a positive result can carry such profound psychological and social consequences. Individuals should take it only by choice.
Routine does not mean mandatory. In theory, women would retain the right to refuse a routine HIV test. Yet, in reality, many women might not know they can refuse the test. It is essential that HIV screening remain voluntary and that women be tested only after providing written informed consent.
The reason for this caution is that many women now infected with HIV face discrimination in employment, housing, access to health care and insurance, as well as in obtaining reproductive health services. It is unethical to mandate screening if needed counseling and follow-up services cannot be ensured for those who test positive. In many instances, such a guarantee is impossible.
With confidentiality safeguards in place, voluntary HIV testing should be offered to all pregnant women in areas where HIV is highly prevalent. Women who have not been tested prenatally should be offered testing at the time of delivery, or soon thereafter, with appropriate counseling before and after the test.
Not every state will choose to provide this service. Rates of HIV infection among women vary widely across the United States, and some states — particularly those with few cases of infection — may decide to spend their resources on other health services. State health authorities are in the best position to determine whether an HIV screening program is the best way to spend limited funds. Those who do decide to offer HIV screening must be committed to developing
adequate health and social services for HIV-infected women and their children.
The case for routine HIV screening is even less compelling for newborns. Although an infant's own blood is examined, the test reveals only whether the child's mother is infected with the virus. If so, there is roughly a one-in-three chance the infant will be infected. Treating all infants born to HIV-infected mothers would result in all uninfected infants being exposed to toxic therapy without deriving any medical benefit. Also, newborn screening is tantamount to involuntary maternal screening, which is ethically unacceptable.
What is acceptable, and already being done across the country, is something quite different — anonymous HIV screening of newborns by public health researchers tracking the course of the epidemic.
The calculus of routine screening could change. The argument for it becomes more convincing as the certainty of the benefits to those who test positive — in the form of treatments or a cure — increases. For example, if a definitive test for newborn HIV infection and safe, effective treatment for infected infants were available, routine screening of newborns might be warranted. For the time being, however, the only routine thing about HIV screening should be that it remain anonymous for newborns and strictly voluntary for pregnant women.
February 17, 1991
Marie C. McCormick is associate professor of pediatrics at Harvard Medical School.