Closing Address to the International Conference of Respiratory Rehabilitation and Post-Polio Aging Problems, Chicago, Illinois
In this speech, given a month before his confirmation as U.S. Surgeon General, Koop took up an issue with which he had first-hand
experience as a pediatric surgeon: the difficulties involved in integrating persons with disabilities into society through
home care instead of hospital care, and through medical and occupational rehabilitation. Koop made it his mission as Surgeon
General to change public perceptions of the growing number of Americans with disabilities, to stress their dignity and potential
rather than their impairments and limitations, to highlight the loss of economic productivity incurred by excluding them from
employment, even as he insisted on meeting their need for special health services and government protections.
Number of Image Pages:
22 (1,432,696 Bytes)
1981-10-16 (October 16, 1981)
Koop, C. Everett
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Medical Subject Headings (MeSH):
Health Care Economics and Organizations
Congenital Birth Defects and the Medical Rights of Children: The "Baby Doe" Controversy
International Conference on Respiratory Rehabilitation and Post-Polio Aging Problems
October 16, 1981
(Greetings to hosts, guests, etc.)
I want to thank the organizers and sponsors of this meeting for inviting me to participate. It is truly an honor and a privilege
to be among this distinguished company.
Dr. Goldberg will be having the last word today -- as well he should -- and I want to congratulate him and his seven colleagues
on the planning committee for bringing together in a coherent fashion a very complex experience in the history of medicine
and health care.
In the few moments I have to share with you this afternoon, I want to take a look at what we have learned from the polio experience
and see how it contributes to the shaping of health policy in this country. We are extremely fortunate to be able to draw
upon the knowledge of so many dedicated people -- not just our own citizens, but people like Andre Dessertine, Audrey King
and Joseph Kaufert of Canada, Dr. Adolf Ratzka and his colleagues from Sweden and elsewhere in Scandinavia, Geoffrey Spencer
and others who have pioneered in the field of respiratory care in Great Britain.
We have every reason to be optimistic about how we care for disabled persons in the future, since we will be building upon
such a strong foundation of knowledge, experience, and compassion.
Let me say, right at the outset, they don't want to repeat at this time a lot of information you have already received
in the course of this three-day meeting. I have had a good deal of experience as a pediatric surgeon dealing with many forms
of respiratory distress in infants. As many participants have already noted, the cost of maintaining respiratory-dependent
infants in a hospital setting are astronomical -- and they are not leveling off.
These are things you know from your own experiences to the infants, young people, and adults, or as victims of paralytic polio.
The issues you are wrestling with however, did not exist in a vacuum, as you well know also. Hence, I believe my best contribution
to this meeting can be to help illustrate what the federal government's perception of this issue may be, how it relates
to the broader challenge of defining the federal role in the whole area of disability, and what the public's expectations
-- and responsibilities -- might reasonably be.
In the 1930s it really was one man -- a federal official -- the President of United States, FDR -- who succeeded in capturing
public attention and focusing it upon paralytic polio. But that's as far as the government went. It was an era before
the establishment of the National Institutes of Health, before government developed the mechanisms it has today to support
individual researchers here and around the world.
And, as terrible a question as it may seem, we have to stop and ask ourselves what would have been the history of the fight
against polio if President Roosevelt had been able-bodied and not dependent on a wheelchair and crutches. I say it is a terrible
question, since it poses for us the constant sense of the easiness we have but the basic instincts of mankind.
Joseph Wood Krutch, the naturalistic and critic, a marvelous writer, described people . . . as he saw them . . . in his book
called Human Nature and the Human Condition. Krutch wrote, "What some of us tend to call 'the human being' first
came into recognizable existence about the year 475 BC and began to disappear about seventy-five years ago."
That is a wry view of ourselves, but it says in a humorous way what many of us take very seriously: the question of whether
-- and how -- you can convince people to follow their own highest instincts without an awful lot of effort.
Franklin Roosevelt had that kind of gift. And the beneficiaries, many of them, are here today. His example is particularly
appropriate, because it does demonstrate that government may not necessarily be the key to the solutions of our problems.
One person with a sense of purpose -- and masses of people following their own best instincts as private individuals -- may
be far more important.
The March of Dimes, the National Easter Seals Society, who are among the cosponsors here, and many other private voluntary
organizations provide an outlet for action that cannot be underestimated. About a month ago, President Reagan met with a number
of representatives of private volunteer groups. He said, "I have a distinct feeling, and have for a long time, that we
have drifted, as a people, too far away from the volunteerism that so characterized our country for so many years." He
has the representatives -- and through them he asked the nation -- to rediscover that vast human strength that has been a
part of our social fabric since this nation was founded.
I would suggest that the significance of the voluntary effort throughout the polio experience needs to be addressed. It was
substantial, but even at that, it may prove to be not a completely adequate model for today's requirements. We have come
to a stage in our history when the federal government has become over-burdened with a great variety of social and human services.
It does the obvious thing -- it passes the costs onto the taxpayer. Or at least, that has been the approach.
Today, we are wrestling with the issue of appropriate balance and we are taking all the steps necessary to remove the federal
government from many activities for which it may no longer be the most appropriate or cost-effective agent. We're taking
some of those burdens away. But now, instead of passing the costs back to the taxpayer, we are passing the tasks themselves
back to the people best suited to handle them.
Sometimes these are state and local governments. But very often they are private, voluntary organizations. That is the strong
feeling of the President -- and I believe he is right. This is the context of federal planning at this time, as we turn to
the challenges of this decade.
We certainly are not lacking for challenges of every sort. Let me share some of them with you and suggest what our response
As you are no doubt aware, this country has been making steady progress in the improvement of health status. For the past
20 years there's been a steady decline in the age-adjusted mortality rates among four of the five leading causes of death:
Heart disease, stroke, accidents, and influenza and pneumonia. The story in cancer, the second leading cause of death in this
country, is mixed. For persons under the age of 45, the mortality rate has dropped about 33 percent. We have also had dramatic
success with certain cancers that affect young people -- leukemia, Hodgkin's disease, testicular cancer, for example.
On the other hand, there have been increases in mortality for cancers in certain sites, such as breast, colon, pancreas, and
the respiratory system.
In other ways, too, we have an idea that our national approach to preventing premature death may be succeeding, even though
the record may be mixed. For example, our life expectancy has been increasing; it's now about 73.6 years for a child born
today. But that's an average; there's a wide discrepancy between, for example, the expectancy for a black male it's
about 65 years and for a white female it's about 78 years.
Similarly, our infant mortality rates have come down, as should be the case for advanced, industrial society. We're at
about 12.5 infant deaths per 1,000 live births. Here again, there are variations, with blacks at about twice that national
average, Chinese-Americans at about half the national average, and whites a bit above the national average.
That is an impressive record for this country, a record we would want to improve in the years ahead. I feel sure we will.
The reasons I have focused on these dramatic mortality statistics is that they may be masking a very challenging picture of
morbidity and disability. In a typical year, the Centers for Disease Control will be called in to investigate some 1,700 outbreaks
of infectious diseases. As you know, there are only a handful or less polio cases a year. But we are experiencing a steady
rise in the number of sexually transmitted diseases, such as gonorrhea and syphilis, genital herpes and chlamydia. Over 2
million cases year cost this country more than $1 billion in surveillance, diagnosis, and treatment.
Influenza and pneumonia still rank among the 10 leading causes of death and are our most persistent infectious diseases generally,
each year we try to prepare ourselves with the right vaccines in the right quantities for an anticipated outbreak of influenza
-- and we may guess right or wrong. There are many strains we know about -- and there are no doubt many more strains we are
going to know about it may not be adequately prepared to fight. We have a somewhat similar situation with penicillin-resistant
strains of gonococcal bacteria that are beginning to appear.
In addition, what has become an especially worrisome problem is the rise in the incidence of nosocomial diseases, - the infections
picked up in hospitals and other treatment facilities. These also tend to be drug-resistant, since they've been growing
in the warm and cozy treatment environment.
Hence, parallel with our victories in preventing premature death is a murky picture of success and failure regarding morbidity.
To get some perspective on the slow but steady rise in the number of Americans who are disabled each year, we can look back
to 1969, when 11.6 percent of the population were disabled. That is, nearly 23 million people were limited in some way from
carrying out normal activities of their age group and sex. By 1973, the total had risen to 13.3 percent of the population,
or 28 million. In 1978, the trend continued, with 13.6 percent of the population limited or disabled in some way -- or slightly
more than 30 million people. The trend seems to be continuing still, and we can assume that about 1 in 7 Americans is disabled,
limited in some way from living a life that is normal for his or her age group.
What we have, then, is a population in which an ever-increasing percentage is considered to be either temporarily or permanently
disabled. While they may no longer appear among the mortality statistics, they may be among the morbidity and disability statistics,
persons who have not died of heart disease, but who are among 5 million or so who are limited in what they can do for the
rest of their lives . . .
. . . Persons who were not victims of paralytic polio, but who are nevertheless among the nearly 5 million who suffer from
impairments of the back, spine, shoulders, and upper and lower extremities . . .
. . . Persons who have not died of respiratory cancer, but who are among the 3 to 4 million who live with disabling and chronic
bronchitis, asthma, emphysema, and other respiratory conditions . . .
. . . And persons who have managed to take advantage of gaining additional years of life, but who do so among the 6 million
or more who suffer from arthritis, rheumatism, and other musculo-skeletal disorders.
To date, we have a mixed history reflecting our ability -- as a wealthy and compassionate nation -- to deal with this range
of disabling conditions among so many millions of people. In addition, we are only now beginning to measure -- in hard dollars
-- the cost of these disabling conditions upon the society as a whole.
From the data collected in the National Health Interview Survey, we've been able to estimate the economic burden of disability
for 1977, the latest year for which we have the figures. A total of 496 million days were reported as lost from work because
of acute or chronic conditions. The total earnings lost by persons missing from work for those conditions amounted to $25.6
billion. For those persons, somebody or some agency has to make up the lost income. It may be workers compensation or insurance,
it may be a relative or friend, it may be a charitable organization, or it may simply be lost. Except for the last outcome,
we have to assume that there is a transfer of that money from one kind of activity account into the other -- the payment of
It would be a rather simple bookkeeping matter -- if it did not involve $25.6 billion. So that is one kind of economic burden.
A different kind of burden is that of lost productivity. What is the potential value of the goods and services that might
have been put into the marketplace, if all persons over the age of 16 were able to work? That is, they suffered from no illness
or disability. We are not computing the loss of healthy, able-bodied persons who are unemployed.
In 1977, according to the Labor Department, there were 2.8 million persons who could not work because of illness or disability.
These people are different from those who lost days from work -- the ones who missed $25.6 billion and income. Now we are
talking about people who are not in the work-force and all, 2.8 million of them. It is estimated that the loss of their productivity
in 1977 cost our country $23 billion.
In addition, economists have placed value estimates on keeping house; that is, the value of housekeeping, if you had to go
out and hire someone to do it. It ranged from $9,718 a year for a woman in her late 20s to $5,503 for a woman above the age
of 65. That's in 1977 dollars. During that year, there were 1.3 million work-years lost as a result of disabling conditions
among housekeepers -- for total social cost of $6.3 billion.
If you add up these three figures -- the losses among persons who are employed but miss workdays, the losses from persons
who are not employable because of chronic illness or disability, and the losses among ill or disabled homemakers -- we arrive
at the estimate for the 1977 economic burden of illness in this country: $54.9 billion, a sizable output loss for our society.
The major cause of these losses is heart disease. Accidents are the second major cause; all cancers, or neoplasms, are the
third: and stroke is the fourth.
These kinds of estimates have been developed for the past several years by a number of economists and statisticians. The figures
I am relying on are drawn from work done by Mrs. Dorothy Rice, director of the National Center for Health Statistics, and
one of the pioneers in this new area of health economics.
This kind of information is especially useful in times of fiscal and budgetary austerity. We are in one of those periods now.
So we have to match those kinds of data with the knowledge and experience of the disabled person -- in other words, with information
from meetings such as this. And from that mix, along with other ingredients, we should begin to see the outlines of a new
and more effective national policy for meeting the challenge of chronic illness and disability in the America of the 1980s
For example, I think all of us can agree on -- or at least agree to take seriously -- several propositions:
First, it is unwise to approach this problem on a disease-by-disease or disability-by-disability basis. As the statistics
indicate, many persons suffer from multiple disease or disability conditions. Also, each of us would have to say that every
condition required 100 percent of our money and effort, if we follow that approach. There are relationships that have to be
weighed, including the relationship of the condition to its total effect on society and the economy.
I might add that the National Institutes of Health have embarked on this kind of research planning, also. They are looking
at some problems, such as nutrition, as matters to be studied by several or even all the institutes. It is a serious and highly
valuable effort to break down the barriers between institutes -- which is an organizational problem -- and the barriers between
researchers in different disease or disabling conditions -- which is a conceptual problem.
Second, we must ascertain as best we can who pays what cost for chronic illness and disability and if that is a fair expression
of how we as a society want the burden to be shared. In many cases, we seem content to let the burden fall most heavily upon
those persons and their families who are directly affected by the disability. Relative to the significance of their experience
to the total health and well-being of society, that would now seem to be an obsolete answer. On the other hand, not all persons
in society can contribute share of help. Not all pay taxes, not everyone can make charitable donations, not everyone can contribute
in-kind, if not dollars.
In our kind of society, where participation in social and political processes has a very high value, this is an important
issue. It is, of course, the classic debate of rights versus responsibilities. I have a right to be left alone; to determine
how I want to live, as long as I don't injure anyone in the process. But I also have the responsibility to somehow help
others who would like to exercise the same right -- but don't have the wherewithal to do so.
Again, if I may invoke the current economic condition, we need to assure ourselves that our policies do not have a disproportionate
impact upon the disabled and their families. So far, government has made an attempt to be fair and many private organizations
and professions have worked to keep government honest in that regard. But the guarantee of fairness is everyone's task
-- public and private.
Third, we've come a long way in our understanding of the role to be played by institutions of care. It's a much smaller
role than had one time been imagined. The swing away from institutionalization is gaining interest and momentum and makes
a lot of sense for a lot of people. But I would hope that we would begin to give deeper thought to what the alternatives are
Item: It is not enough to work toward moving respirator-dependent infants from our intensive care pediatric facilities. We
need to do more work with parents and neighborhood groups and public services to make sure the alternative for the infant
is not an environment of danger, life-threatening or uncaring.
Item: A problem beginning to occur among the elderly is the same issue of alternatives. We are aware that some women homemakers,
in their late 60s and 70s, are given in-patient care for a period of time but I then sent back to the community, to their
homes -- where there may be no one to care for them. This is the phenomenon of the aged parent who's outlived his or her
children, who has survived stroke or heart disease through the miracle of medicine but will not survive the ordinary stresses
of living at home without additional care.
Item: As I illustrated with the slowly rising trend-line of the number of disabled persons in our society, there are more
and more people who have known independent living and who have experienced a particular quality of life pleasing to them,
for whom both independence and quality may have been erased by an illness or disability. Or so it might seem. But I can't
accept that as a "given" proposition.
In this instance I think society has to rededicate itself to the rights of the handicapped. And I say "society," not
just government or any particular segment or sector of society. We cannot replace lost limbs or damaged organs, we may not
be able to reverse mental retardation or correct all birth defects, but we can try to make sure that every person with these
or other conditions is encouraged to take part to the fullest extent in our nation's way of life. And with encouragement
goes society's responsibility to protect those individuals as they pursue their legitimate personal and family goals.
I think that has to be part of the deinstitutionalization movement. What good is it, really, if we reduce the chances of a
person's being unfairly institutionalized -- only to discover that the walls are just as high out in the community? We've
got our work cut out for us on this one.
Finally, the disabled community -- persons suffering from chronic disease conditions as well is from physical disabilities
-- this very varied community has had a rather high level of participation in public policy and program implementation over
the years. Sometimes the disabled themselves are involved, which has been the case with polio victims, for example, or they
have been vigorously represented by surrogates and advocates. But we are just beginning to understand the importance of this
kind of participation. As the median age of Americans continues to rise, the median age of disabled persons is rising, too.
We can expect, therefore, to hear from a new and more complex constituency in the future -- older persons who are disabled
or suffer from a chronic condition, yet demand, as is their right, to participate fully in the decisions of their policy and
of society in general.
I think society itself, as well as each organization that represents the disabled, needs to ask itself whether or not it is
equipped to grow with these changes and to accept and carry out the responsibilities of the future. It is one thing to extol
the virtues of our participatory democracy; it's another thing to carry them out. We ought to do both those things just
as well as we can -- now and for the decades to come.
As you can tell, I did not come here this afternoon with a briefcase full of answers. Nor did I come with the particular focus
of the polio experience. That is an invaluable experience and it will contribute to how we work in the future on behalf of
all our citizens with whatever chronic illnesses and disabilities, but I did come here today to share with you several of
the questions that we all need to study and answer:
How do we maintain our moral and ethical commitments with a redrawn and constrained federal presence?
How do we guarantee equity and compassion in the midst of a growing complexity of information and issues?
How do we change the traditional behavior of individuals and institutions toward the disabled, in light of the growing community
of such persons?
And how do we bring back into the balance the sharing of responsibilities and costs among both the public and the private
sectors, the individual and the community?
I know you will, as individuals and collectively, be seeking answers to these questions in the days to come. I want to know
that those answers have a high priority for me personally in my role in the Department of Health and Human Services.
In closing, please let me extend once again my congratulations to the planners of this meeting. Thank you again for having
me join you. I certainly do look forward to the summary of what has taken place here.