Since this 102nd Annual Meeting of the American Public Health Association is focused on minority health, you have heard and will continue to hear much about the proper uses and abuses of the health care delivery system in the United States as it pertains to the poor, the disadvantaged, the deprived minorities. The proper uses of what there is of a health care system should be the same for both the minorities and the majority of our society plus additional stakes for the minorities to address and correct the myriad factors that impact on good health. Despite pious platitudes, declarations of progress, assertions of recognition of the sacredness of human life and voiced concern for human dignity, abuses of the health care system for minorities abound. Among these is the abuse of minorities for human experimentation, sometimes for quite frivolous, poorly conceived and poorly monitored experiments, often without informed consent of the human subjects and indeed, not infrequently, without any consent of any kind.
Such abuse was perpetrated by the mighty government of the United States against its own black citizenry of Macon County, Alabama in the infamous Tuskegee syphilis tragedy. Mr. Peter J. Buxton, formerly a public health advisor for the United States Public Health Service and now an attorney in California, played a major part in bringing this story to the attention of the general public. In August, 1972, Jean Heller of the Associated Press broke the shameful story which was flashed around the world. Since then, the startling revelations and the awesome dimensions of this crime against humanity have become widely known but the surviving victims have not been treated well by their government and abuse continues.
Let us review some of the aspects of the Tuskegee tragedy which had its onset in 1933 A.D. Ironically, the events that lead to this tragedy were based on a commendable endeavor launched in 1929 by the Julius Rosenwald Fund, a Chicago based philanthropic organization. The Fund set out to obtain health indices in Macon County and in five other rural counties of the South to provide the data to support the critical need for a program to upgrade the health and medical care of poor, rural blacks in the South. These counties, of which Macon County was perhaps the poorest and most depressed, had high incidences of diseases that resulted in large measure from the poor living conditions that prevailed in the area. There were high prevalences of syphilis, tuberculosis, pellagra, malnutrition, malaria and maternal and infant mortality. Macon County, of which Tuskegee is the county seat, had the third highest mortality rate among the 67 rural Alabama Counties in 1929.
Vernal G. Cave, M.D., was a noted public-health physician and a member of the Ad Hoc Tuskegee Syphilis Study Panel, Department of Health, Education and Welfare, in 1973. Originally published in the Journal of the National Medical Association 67 (1975): 82–84. Reprinted by permission of the National Medical Association.
According to the 1930 census the population of Macon County was 37,103 of which 82% were black. The county had only one black and nine white physicians engaged in private practice. This small number was located mostly in the central and northeastern portions of the county where most of the whites lived. The average income was one to two dollars a day. Even peripheral medical service was beyond the reach of most of the inhabitants. Roads and transportation were poor. Ignorance, superstition and dependence on folk remedies all contributed to the acceptance of excessive illness and short life spans as preordained. Many were only vaguely aware of the names, consequences and treatments of diseases that were common in the area. Convulsions or seizures due to various causes were dismissed as “fits” or “spells,” miscarriages or stillbirths, possibly a consequence in some cases of congenital syphilis, were accepted without any procedures being performed to determine the cause; open sores were tolerated and only a vague knowledge of tuberculosis was evident in those who saw their children’s bodies wracked by coughs and emaciated by “consumption.” The attitudes of the inhabitants toward life, health, illness and death reflected a high degree of resignation and fatalism. This probably was a necessary psychological adjustment to the depressing reality of the futility of expecting anything approaching adequate medical care or any improvement in all of the various factors that can make for the good life. In 1932, Macon County with its socio-economic oppression was the perfect setting for the crime that was about to be perpetrated.
The Julius Rosenwald Fund program was the outgrowth of a genuine altruistic spirit. Armed with the knowledge that 35% of 3,684 individuals tested had reactive or positive tests for syphilis it undertook the commendable effort to examine and treat these cases. The United States Public Health Service cooperated in this project. In 1932, hardpressed for finance in the time of the Great Depression, the Fund had to relinquish its efforts at syphilis control and consequently transferred its program to the Public Health Service. Before withdrawing it had succeeded in demonstrating that relatively inexpensive mass treatment for syphilis was feasible. Indeed this demonstration has remained the cornerstone of all syphilis control efforts to this very day.
In October of 1932, the Public Health Service began to do its own thing on the black population of Macon County. In order to get a good response, schedules announcing the clinics set up for blood collecting were publicized using churches, schools, stores and other public gathering places. A total of 4,400 males and females over 18 years of age were tested. Twenty-two per cent were found to have positive blood tests. Out of this group, 412 who were known to have received no therapy and who were males of 25 years of age or older were chosen to be the original group for this study. To this day the Public Health Service has been unable to produce any semblance of a protocol showing the objectives of the study or how those objectives were to be achieved. Indeed there is some evidence that originally only some type of short-term study was contemplated. However, in 1933 another group of 200 black males of comparable ages to the first group but free of syphilis were chosen as controls. It is clear from what happened that from that point that the objective of the researchers was to follow the course of untreated syphilis through to the living end or more precisely, the dead end of the subjects.
Nowhere does the record show that the 412 syphilitic individuals were told in any meaningful way exactly what disease they had and the possible dangers of not being treated. All evidence points to the likelihood that they were never told and, therefore, were not in position to give knowledgeable or informed consent for their participation in this study. They certainly were not made aware of the disabling and fatal implications of untreated syphilitic infections.
To provide rapport and surveillance over the human subjects, a black nurse was employed to keep tabs on the human subjects. As members of “Miss River’s Lodge,” they thought of themselves as the chosen few. These unwitting victims were entitled to free medicine provided, of course, that it would not interfere with the relentless progression of their syphilitic states. This included “spring tonic,” whatever in the world that might have been. The human subjects in this study were told that they would receive free examinations from the government yearly. On these days, they would be accorded free transportation in a “government car” and free hot meals on the days of examination. A magnanimous bonus was that they would be given opportunities to stop in town on the return trips to shop or visit with friends. At some point early in the study, the Milbank Memorial Foundation agreed to pay 50 dollars toward burial if the families made available the victims’ bodies for autopsy. The final touch!
There was common medical knowledge in 1932 that untreated syphilitic infection produces increased disability and premature mortality. What did this study find? This study confirmed that untreated syphilitic infection produces premature mortality and increased disability.
The first report on this study entitled “Untreated Syphilis in the Male Negro, a Comparative Study of Treated and Untreated Cases” by R. A. Vonderlehr and others in 1936 contained, among others, the following observations: “Only 16% of the 399 syphilitic Negroes gave no evidence of morbidity as compared with 61% of the 201 presumably nonsyphilitic Negroes. The effect of syphilis in producing disability in the early years of adult life is to be noted by comparing the cases with no demonstrable morbidity under 40 years of age. This comparison shows that only one-fourth of the Negroes with untreated syphilis had no manifestations of disease whereas three-fourths of the uninfected persons were free of manifestations.”
All subsequent reports represented monotonous reaffirmations that untreated syphilitic infection produces increased disability and premature mortality. It might be said that they proved a point, then proved a point, then proved a point. To quote Gertrude Stein, “A Rose is a rose, is a rose, is a rose.”
In 1946, 14 years of non-treatment had elapsed. Penicillin, hailed as the miracle drug, was then available and utilized for the treatment of syphilis. At this time 25% of the syphilitic group and 14% of the controls of comparable ages had died. It was calculated by actuaries that at age 25 black male syphilitics allowed to remain untreated would have reduction in life expectancy of approximately 20%. Still the patients went untreated. The Public Health Service even continued to fail to treat for months after unanimous recommendation for immediate discontinuance of the study was made by the nine member Ad Hoc Tuskegee Syphilis Study Advisory Panel appointed on August 28, 1972 by Dr. Merlin K. Duval, Assistant Secretary for Health & Scientific Affairs of the Department of Health, Education and Welfare.
This in capsular form is an account of one of the flagrant abuses of the health delivery system. It is an exploitation in our nation’s history whose immorality is so obvious that it can be quickly perceived by any but the hopelessly inconvertible bigots. All the survivors have now been located by the Public Health Service and have been offered the best medical care for the rest of their lives. But outrageously, the government is denying compensation to the victims. They have forced those who seek compensation into lengthy litigation. One would have thought that there would by now be federal legislative and executive agreement to compensate these aged victims rather than subjecting them to prolonged and agonizing trials. Yet this is the current status.
What should be done about this patient abuse? I offer a few suggestions:
A. PREVENTION. Prevention requires dealing with the root causes that make poor people susceptible to experimental human exploitation—poverty, ignorance, poor housing, unemployment, malnutrition, and now more recently inflation, to mention a few. It was stated in one of the reports by some of the researchers in this study that because of their lack of education, the human subjects could not be motivated by explaining to them that they would be contributing to humanity by taking part in this study. What irony! You can be sure that if the opposite condition existed; that is, if these human subjects were well educated, they likewise could not be persuaded to be sacrificial lambs for the rest of humanity.
B. LEGISLATION. Legislation is now pending to establish a National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. This legislation should be pushed and it should contain all or most of the recommendations of the Ad Hoc Tuskegee Syphilis Study Advisory Panel. This would include what can be called “ombudsmen” at the local levels to interpret for potential subjects of human experimentation just what they are getting themselves into.
C. COMPENSATION. Adequate compensation for the families and the surviving victims should be made and it should be done now. With all of the remaining victims in the late evenings of their lives, America has only a very short time left to make some type of material amends that can still be enjoyed by these victims. You and I can both cite examples of how speedily our government can act when it considers it important to do so. It would be extremely helpful if a resolution on this subject could come out of the deliberations of the Governing Council of the American Public Health Association at this session.
D. RECRUITMENT. Recruitment, training and retention of minority personnel in the health field is a must. For how else do you get physicians and other health workers in the Macon counties of our land? How else do you get a sufficient supply of health personnel to meet the needs of our indigent minorities in our urban ghettoes? And finally,
E. MINORITY PARTICIPATION. I would suggest that this is a signal example of the need for minority participation in every area of decision making in governmental involvement in health. It is difficult to conceive that our history would have been stained by the Tuskegee Tragedy if there had been minority representation when plans for this study were hatched in 1932. Our continual push for involvement is based not only on our desire to have a “piece of the action” at every level but more importantly on particular points of view that we can bring to any deliberations based on the milieu from which we come.
We can reduce the abuses and increase the proper uses of the health care delivery system for minorities. If we can move meaningfully on what is herein suggested, the victims of this American tragedy may become “Unknown Heroes for Change” who gave their lives so that others might live. May this be for all people everywhere.