Читать книгу The Tuskegee Syphilis Study - Fred Gray - Страница 12

Syphilis was a terrible disease. It still is, of course, but it is easily treated today by a number of antibiotics. In 1932, that was not the case, and one can appreciate both the scientific zeal and the humanitarian instincts of those who originated the Tuskegee Syphilis Study at a time when there was no simple solution to what amounted to an epidemic among certain population groups.[1]

Before beginning work on this case, I, like most lay people, knew what syphilis was, but I knew little of the particulars of the disease. From the documents in this case and from talking with the medical professionals, I learned enough to explain that syphilis is caused by a bacterium, a spirochete, that lives only in humans and is almost always transmitted from one person to another by intimate sexual activity. However, congenital syphilis can also result when an infected pregnant women passes the disease to her developing baby, who can be born deaf, mentally retarded, blind, or with other disorders.

Once the syphilis bacterium is inside a person’s body, the disease develops through three stages.

First, within ten to ninety days after infection, a small red pimple will appear at the site of infection, usually on the genitals. This pimple turns into a sore which is called a chancre. There is usually no pain or soreness and the victim may not even notice the chancre. In thirty to forty days, the chancre goes away.

The secondary stage begins about a week later and lasts for several weeks. The main visible sign is a rash that can appear, especially on the palms or the soles of the feet. Some people experience hair loss, fever, open ulcers, and headaches, while others have only very mild symptoms and may not even notice them. Any open ulcers during this phase are extremely infectious to others.

Between the second and third stages, there is a latent period which can last for years. During the latency, syphilis can only be detected by a blood test. Left untreated during this latent period, the third or late stage of the disease can occur at any time for the rest of the victim’s life.

In the late stage, the syphilis bacterium attacks the neurological and cardiovascular systems of the body, damaging the heart, brain, and spinal cord, but also the skin, bones, and other organs. The victim’s heart may fail, he or she may develop mental illness, may go blind and/or deaf, and may suffer paralysis, or other debilities. Although some people live to a ripe old age with syphilis and never have severe symptoms, others may be devastatingly ravaged by the disease. Persons with advanced syphilis may develop huge, encrusted ulcers on their skin, especially near their joints. Also, their brains may be affected to the point that they literally go stark raving mad. The bacterium also may attack the blood vessels or the heart, causing aneurysms that may burst, resulting in sudden death.

After Mr. Charlie Pollard came to see me in 1972 and I agreed to represent him in a lawsuit against those responsible for the Tuskegee Syphilis Study, my staff and I began to research the study’s origins. As the case expanded, we included other researchers and the staffs of our associated counsels. Because the study had existed for so long, many of the original documents were filed away in long-forgotten archives. Gradually, the details emerged.

As mentioned in the previous chapter, the study began as a project of the Julius Rosenwald Fund, which took an active interest in both education and health care for African Americans in the rural South. Julius Rosenwald was a Jewish philanthropist who had helped build the Sears and Roebuck Company mail order business. He became a patron of Booker T. Washington and the Tuskegee Institute and also financed the construction of a large number of schools in parts of the South where state support for the education of African Americans was weak to non-existent; the very first of those schools was built in Macon County. Rosenwald’s foundation sought to improve race relations in general as well as the specific health and social problems facing African Americans in the Southern states.

A large-scale public effort to combat venereal disease, including syphilis, had been underway in the U.S. since World War I, but in rural areas vast numbers of poor people were still unable to obtain any treatment. In Alabama, for example, some fourteen free clinics operated by the State Board of Health were treating ten thousand indigent patients by 1930. Yet most of these were in urban areas. In rural areas, the public health service gave private doctors free drugs for treatment of indigents, but the physicians were allowed to charge a two-dollar fee and many of the poorest patients could not afford that amount.

The Rosenwald Fund, meanwhile, sought an alliance with the U.S. Public Health Service (PHS) to expand medical services to the poorest African American areas of the South. In addition to its work in education and social services, the Fund was helping to build hospitals and clinics and was also promoting the hiring of African American nurses and doctors and the training and hiring of African American public health personnel. To oversee this work, Dr. Michael M. Davis was named medical director of the Rosenwald Fund. In 1929, Davis went to the surgeon general of the U.S. Public Health Service to ask for assignment of a PHS adviser to the Rosenwald medical efforts in the South. Dr. Taliaferro Clark, then head of the Public Health Service’s Venereal Disease Division, a Virginian who had been with the Public Health Service since 1895, was given this assignment by then Surgeon General Dr. Hugh S. Cumming.

After appointing Clark as the Rosenwald adviser, Cumming then asked Davis for a Rosenwald grant to provide follow-up treatment for those found to be infected with syphilis in a testing program the PHS had just completed in Bolivar County, Mississippi. Approximately a fourth of the two thousand African Americans employed there by the Delta Pine and Land Company were infected.

Davis agreed to pay for a one-year program of treatments, provided that at least one African American nurse would be hired for the project. Thus the PHS was able to make a demonstration treatment program out of its survey project in Mississippi. The success of this effort led PHS officials to ask the Rosenwald Fund to help set up similar projects in other states. The Fund’s directors subsequently appropriated fifty thousand dollars to be spent during 1930 for syphilis treatment demonstrations in six counties in Alabama, Virginia, Tennessee, Mississippi, North Carolina, and Georgia. The Alabama project was to be in Macon County.

Meanwhile, medical interest in syphilis in the early decades of the twentieth century was not limited to the South or even to the United States. Syphilis had been a serious health problem around the world for centuries. There was considerable research on syphilis throughout the world in the late nineteenth and early twentieth century as medical and scientific technology improved. The discovery of the causes and sometimes the cures of other diseases led medical professionals to hope a cure could be found for syphilis, too. The spirochete that actually causes the disease was isolated by two German scientists in 1905, and the Wasserman blood tests for detection of syphilis came along two years later. However, it would be another thirty-five years before the discovery of penicillin produced a reliable, effective cure.

During our legal investigation of the Tuskegee experiment, we found a document, “An Introduction to the Tuskegee Study,” written in 1964 by R. A. Vonderlehr, M.D., for a venereal disease conference. This paper discusses some of the early research, beginning with a Norwegian study of 2,200 syphilis patients between 1891 and 1910. At the time, the only known treatment involved injections of arsenic-type drugs, which was not always effective and often caused serious side effects. The doctor doing the Norwegian study believed the patient’s own immune system would be more effective. So he hospitalized these patients until their lesions healed but he did not treat them. Then, in 1928, the original doctor’s assistant, Dr. E. Bruusgaard, reported on the fate of these patients during the fifteen to forty years since they had been infected. He found that of every “hundred patients with untreated syphilis, ten would develop neurosyphilis, thirteen cardiovascular syphilis, and twelve benign late syphilis, but that sixty-four would pass through life apparently unharmed. Furthermore, in twenty-eight of the sixty-four, ‘spontaneous cure’ would occur.”

According to Vonderlehr, Bruusgaard’s findings were considered suspect for various reasons of methodology, principally that he had obtained follow-up information on only 22 percent of the original 2,200 patients. Nevertheless, his report was received with great interest by syphilis specialists around the globe. During the years 1928-1930, the Health Section of the League of Nations—the forerunner of today’s United Nations—conducted a survey, out of which a group of leading syphilologists of the day standardized a procedure for the treatment of early syphilis in the United States. Vonderlehr described both that treatment and the beginnings of the Tuskegee Syphilis Study:

In general, this [standardized procedure] consisted of weekly injections of an arsenical and bismuth administered in alternating courses for a period of 70 weeks. For comparative purposes in evaluating the efficacy of this treatment, a group of untreated syphilitics was desirable. Although the Bruusgaard study had just been published, these data did not seem applicable to the situation in the United States. A large percentage of our infected population was Negro and with even our limited knowledge of that time we were aware that in this group syphilis more frequently attacks the cardiovascular than the central nervous system. We were also aware that although cardiovascular conditions could easily be detected their etiology could rarely be determined prior to autopsy.

Between 1929 and 1931 the Public Health Service in cooperation with local health departments and the Julius Rosenwald Fund had surveyed six rural areas in the South. The highest prevalence of syphilis (398 per 1,000) was found in Macon County, Alabama. Of the 1400 cases admitted to treatment during the survey, only 33 had ever had previous antisyphilitic therapy and the average for these 33 was less than 5 arsenical injections.

The large number of syphilis cases in Macon County, and the fact so few of the cases had received any treatment, was to play a crucial role in the creation of the Tuskegee Syphilis Study.

The Rosenwald/Public Health Service projects during 1930–31 were almost too successful. Approximately forty thousand persons were tested for syphilis in the six counties surveyed, and 25 percent were found to be infected. The infection rates ranged from a low of 7 percent in Albemarle County, Virginia, to a high of 36 percent in Macon County. Everyone involved realized they had documented a problem of enormous dimensions, and solving it would take both public money and public resolve. However, as the Great Depression deepened, there was less rather than more money available from both government and philanthropy to address the problem. The Rosenwald Fund directors, hamstrung by the declining value of the Fund’s assets in the stock market, voted in the Spring of 1932 to end the syphilis treatment program.

However, as Dr. Vonderlehr indicates above, even if no funding was available for an ongoing treatment program, the very fact that there was so much untreated syphilis in Macon County offered the opportunity for a study of a different sort.

The idea for an observation study of the effects of untreated syphilis in Macon County may have originated with Dr. Taliaferro Clark, who was responsible for writing the report summarizing the Rosenwald surveys, or it may have come from some of the young white doctors who had worked on the project in Macon County. In any case, Dr. Clark became the high-level advocate necessary to create the Tuskegee Study of Untreated Syphilis in the Negro Male.

All the ingredients were there. The county had a high African American population (82 percent). The Rosenwald demonstration programs had shown the residents of Macon County to have the highest incidence of syphilis among the six counties surveyed in 1930–31. Virtually none of the cases of syphilis among the rural population had been treated. Thus, case acquisition, which required mass screening, could be done most cheaply here. In Tuskegee Institute’s John A. Andrew Memorial Hospital, there was a facility where physical examinations, X-rays, and spinal taps could be made. PHS officials felt that the African American medical professionals associated with the Andrew Hospital were already known in the community and would help to reassure the African American subjects of the observation.

If there were no funds to treat the syphilis problem in Macon County, at least a scientific experiment might be a way to learn something from it, Dr. Clark reasoned. The study he proposed was not originally planned as a long-term observation of syphilitics. Clark’s original design was for an observation project of only six to eight months. The goal was to assess the extent of medical deterioration, correlated against the duration of infection, among a group of untreated syphilitics. That group was to be located by mass screening a larger population using Wassermann tests. Like many public health surveys it was not single-purposed. Instead, the information gained would have helped answer a number of open questions of great interest. First, studies by American’s leading syphilologist, Dr. J. E. Moore of Johns Hopkins, had shown that 80 percent of syphilitics would suffer active late lesions. However, the Bruusgaard study cited by Vonderlehr indicated that only 37 percent of those infected had developed active late lesions. Those patients had been left untreated by a doctor who doubted the efficacy of heavy metal treatments. If Bruusgaard was right, a 37 percent complication rate was interesting and might warrant questioning the benefit as opposed to the risk, of then current arsenical treatments.

Second, the venereal disease professionals of that era, like many medical researchers before and since, believed that government at all levels, and the public, misunderstood how important and deserving of support was their research. Reticence about discussing sexual matters, coupled with the high incidence of venereal disease among the poor, accounted for public indifference to what the doctors deemed, properly, one of the nation’s major public health problems. If the true extent of the damage syphilis causes could be shown, the money for public health treatment efforts might materialize despite the Depression’s onset. Third, poorly done studies of syphilis in African Americans showed the disease led to different complications than for Caucasians: African Americans endured much more heart disease, and considerably less paretic neurosyphilis. A properly conducted study could provide data on the incidence of the various types of late syphilitic complications among African Americans. The Bruusgaard study had involved only white Norwegians; the Rosenwald surveys promised a method of getting comparative data on black Americans.

Males were chosen for the survey because their sex organs are external. Males are much more likely than females to notice syphilitic chancres, and are therefore more likely to give an accurate medical history concerning the date of infection.

This was the Study plan. It was thought out from the scientific perspective, although its central premise, that reasonably accurate date-of-infection data could be obtained from the subjects, was known to be dubious at best. Otherwise, the Study was well designed to yield useful information. Its implementation was a disaster because almost no thought was given to the people who were to become its victims.

From the start the program was based upon making Macon County African Americans believe that this was another public health treatment program. The Rosenwald Foundation’s earlier efforts had been enormously successful and had created a deep reservoir of good will among the local farmers and laborers. The Rosenwald files at Fisk University contain hundreds of appreciative letters and interview reports from Macon County residents.

This good will was systematically exploited in a manner perhaps never fully understood by the responsible government agencies. For example, Dr. Clark wrote that Macon County’s high prevalence of untreated syphilis was a “ready-made situation, if I may be permitted to use this phrase,” but “in order to secure the cooperation of planters in this section it was necessary to carry on this study under the guise of a demonstration and provide treatment for those cases uncovered found to be in need of treatment.” That course, pretending that this was another Rosenwald-type demonstration and treatment program, was necessary not only to get the cooperation of the white planters, but also of the local African Americans.

From the beginning, the white doctors and public health officials involved knew that they were misleading the African American test subjects about the true purpose of their efforts in Macon County. Their correspondence and reports reveal that they knew they had to pretend to provide treatment in order to secure the participation of the African Americans to be tested, yet they had to withhold treatment in order to achieve their study results. As we shall see, they failed on both counts.

In the early fall of 1932, Dr. Clark traveled to Alabama to make preparations for the experiment. He met with several groups whose cooperation he felt was essential to the success of the program.

One group was the Alabama Board of Health and its director, state health officer Dr. J. N. Baker. Jim Jones, who assisted my legal team in researching the case, later wrote in his book Bad Blood that “Dr. Baker extracted an important concession from Dr. Clark in exchange for his approval and cooperation: Everyone examined and found to be syphilitic would have to be treated. How much treatment was the problem. Since Dr. Clark planned to finish the study within six to eight months, it would have been pointless for Dr. Baker to have insisted upon the full program of treatment necessary to cure syphilis. That required more than a year to complete.” According to Jones, the understanding reached between Clark and Baker required “every patient who was examined and found to have syphilis, including those who were selected for the study, was supposed to receive eight doses of neoarsphenamine and some additional treatment with mercury pills, unless treatment with either drug was contraindicated on medical grounds.”

Jones speculates that Dr. Baker had two primary motivations. First, giving at least minimal treatment for the Macon County syphilitics was the medically humane thing to do and, while it might not cure them, it would make them less contagious to others. Second, Dr. Baker knew that the “Rosenwald Fund’s syphilis control demonstration had increased public awareness of what a menace the disease posed in the area. Dr. Baker may have reasoned that white employers would not cooperate unless the physicians offered some relief.”

The support of white planters in Macon County was evidently considered important for getting out the word to the potential African American test subjects, but Clark did not meet with the planters on his September trip. That was left to the project staff once the work was actually underway.

Also key was to obtain the cooperation of Tuskegee Institute and the African American doctors at the Institute’s Andrew Hospital. Both Dr. Eugene H. Dibble, the Medical Director of the hospital, and Dr. Robert R. Moton, the President of the Institute, permitted the government to use the facilities of the hospital for the Study. The PHS correspondence files indicate that surgeon general Hugh Cumming himself appealed for Dr. Moton’s support, stressing the value to be gained from the research and the necessity of having the assistance of the doctors at Andrew Memorial Hospital.

A final group needing to be solicited for approval was the private physicians in the county. At that time, there were nine white and one African American physicians in private practice. According to PHS files, Dr. D. C. Gill, director of the state Bureau of Preventable Diseases, met on behalf of the PHS with the members of the Macon County Board of Health, the local medical association (in this period of segregation, the sole African American physician in the county was not allowed to be a member of the association). Gill explained the project to the association and the private doctors agreed to support it.

Meanwhile, Dr. Raymond Vonderlehr had been named by Clark as the Public Health Service officer who would actually be in charge of the Study. Like Clark, Vonderlehr was a Southerner (Virginia). He was in his mid-thirties at the time and had been with the PHS for a little less than a decade. He was well-respected by Clark and his other superiors and had an extensive background in syphilology, including cardiovascular syphilis.

Joining Vonderlehr to help launch the project was Dr. O. C. Wenger, the Director of the PHS Venereal Disease Clinic in Arkansas. Wenger had supervised the 1929 surveys in Mississippi that led to the Rosenwald surveys the next year, and he had accompanied Clark to Alabama in September 1932 to secure the cooperation of the Alabama Board of Health and Tuskegee Institute. He was certainly familiar with the goals of the project and well-qualified for the field work that was about to begin.

The PHS officials were interested in hiring an African American nurse for the project. Dr. Dibble recommended Eunice Rivers, who at that time was a supervisor of night nurses at Andrew Memorial Hospital. More than any other single person, Nurse Rivers was to personify the Tuskegee Syphilis Study to the six hundred men who became involved in it. For the purpose of the study, Nurse Rivers was assigned as a scientific assistant to Venereal Disease Program of the Macon County Health Department.

In any event, by October 1932, the U.S. Public Health Service, with the cooperation of public health agencies in Alabama, and the apparent approval of the local, state, and national medical establishments for treatment of venereal disease, was ready to embark upon a program which would not treat syphilis in African American males, in order to observe the effects of untreated syphilis. Thus the Tuskegee Syphilis Study was launched. It was to continue for forty years.

Note

1 - The information in this chapter is drawn largely from documents and information discovered during the legal research for the court case filed in 1973.