I'm from the Government and I'm Here to Kill You Page 6
Another 10 percent of all untreated infections progress to neurosyphilis, where the spirochete attacks the brain and nervous system. The process usually begins with problems with coordination and muscular weakness, and often headaches. Sometimes the optic centers and optic nerve are attacked, leading to blindness. From there the disease progresses to insanity, dementia, paralysis, and death. The process is not mercifully quick: nine years passed between gangster Al Capone becoming psychotic in prison and his 1947 death at home in Miami Beach.
Cardiovascular syphilis develops in another 14 percent of untreated syphilis cases. The bacteria attack the victims’ circulatory system and erode the heart valves, causing congestive heart failure, and inflame and narrow the coronary arteries, which can cause a heart attack. Or they may attack the aorta, the body’s main artery, weakening its walls and causing it to balloon out in failures known as aneurisms. If an aortic aneurism bursts, the victim bleeds out and dies in seconds.
Syphilis was once astonishingly widespread in America. One 1915 study concluded that about 5 to 10 percent of America’s adult population was infected and that it caused 20 percent of the country’s mental commitments.6 During the World War II draft, 5 percent of draftees tested positive.7 The spirochete was at least egalitarian, as the 2014 Journal of Medicine and Life explains:
The writers were among the most affected category…. Alphonse Daudet, Thomas Chatterton, Keats, James Boswell, Baudelaire, Heinrich Heine, Dostoyevsky and Oscar Wild (sic) are only a few examples of writers suffering from syphilis. Romanian poet Mihai Eminescu was diagnosed with syphilis, too. He died in a mental institution at the age of 39 years. Even the philosophers, who were usually considered superior minds, and insensitive to women’s charms, also have suffered for syphilis. The most famous of them were Friedrich Nietzsche (1844–1900) and Arthur Schopehnauer (1788–1860).8
As might be expected, there had long been attempts to find a cure. By the seventeenth century, it was known that syphilis seemed to be affected by high fevers and mercury poisoning (“A night with Venus, a lifetime with Mercury,” went the saying), so sufferers were sometimes dosed with the chemical and heated in special ovens that left their head protruding. The approach had two drawbacks: it rarely killed the disease and often killed the patient. The mercury “therapy” lasted into the early twentieth century; at one point, it was estimated that in the United States mercury treatment killed thousands annually.9
Then, in the early 1900s, a German doctor named Paul Ehrlich became fascinated by the process of staining germs to identify them, a process that was being advanced by Germany’s new and rising chemical industry. If there were chemicals that would color only one type of cell, he reasoned, there might be ones that would kill only one type of cell. What he wanted was a “magic bullet” of a chemical, one that was toxic to disease bacteria but not to normal cells. With that as his goal, he set to work with Teutonic thoroughness, testing one likely chemical after another to see if it would kill the syphilis spirochete. He invented a term for what he was seeking to create: “chemotherapy.”
The search was exhaustive and, we may assume, exhausting. He set out to modify the toxic stain atoxyl, which was based on arsenic and known to affect bacteria similar to the syphilis spirochete. He and his assistant, Dr. Sahachiro Hata, tested 605 compounds without finding what they sought—but Number 606 hit the mark.
The 606 chemical was arsphenamine, soon given the trade name of Salvarsan, and its impact was enormous; a cure had been found to one of the major banes of humanity. In 1910, its first year of production, sixty-five thousand doses had been given to twenty thousand patients.10 Two years later, Ehrlich brought out Neosalvarsan, an improved form of the medication.
Salvarsan was far from perfect. In the presence of oxygen, it decomposed into a very toxic compound, so it had to be packaged under carbon dioxide and quickly mixed and administered. The injections could be so painful that they required treatment with narcotics. It did have side effects (including liver damage—after all, it was based on arsenic), and it did not cure every case, but it did raise the chances of symptom-free survival to 85 percent.11 In the 1920s, it was discovered that those odds could be raised by combining Salvarsan injections with those of bismuth, a heavy metal that is much less toxic than mercury.12
Salvarsan remained the standard treatment for syphilis for more than thirty years. In 1943, it was proven that the new drug penicillin would cure syphilis with only one injection if caught during the disease’s primary stage and only a few injections if caught later. Penicillin was easily administered and, as long as the patient was not allergic, it did not cause side effects.
BEGINNINGS OF THE TUSKEGEE STUDY
The Tuskegee Syphilis Study began in 1932, a decade before penicillin. The initial study was hardly objectionable, but “mission creep” swiftly made it otherwise. A plan to cure untreated syphilitics while documenting what damage the disease had already done instead became a plan to leave the patients uninformed and untreated, and to document what damage the disease would do to them in the future. The new approach was not only horrifying, it also put the government doctors in violation of the ethical imperative “first do no harm.” That almost forty years passed with no doctor “leaks” is a sad part of our history.
In 1929, the charitable Rosenwald Foundation provided a grant to the U.S. Public Health Service (USPHS) to study the seriousness of syphilis in the population of six rural counties, including Macon County, Alabama. The county’s residents were impoverished black sharecroppers who could rarely afford medical care, so it was a safe wager that untreated syphilis would be a major problem. Macon County had a regional Veterans Administration hospital and was home to a teaching hospital at Tuskegee University, a historically black college, where blood samples could be analyzed.13
The initial study found that 25 percent of the adult test population had syphilis, and 90 percent of them had received no medical treatment for the disease.14 The authors of the study began to write a plan to treat the ten thousand individuals who had tested positive—given the numbers, it was going to require a Herculean effort.15
On September 17, 1932, Eugene Dibble, the medical director of the Tuskegee Institute, wrote to another Tuskegee official about the survey:
The experiment was very successful but was discontinued due to the lack of funds. The U.S. Public Health Service however, is very anxious to extend its research further into this problem, so they can find out just what effect syphilis is having on people who have been untreated over a period of years. As you know, there are hundreds of people in this section who probably have certain forms of syphilis and have never had any treatment whatsoever….
The cost of the treatment of this disease is very high, so that it would be of world-wide significance to have this study made.16
This approach still envisioned curing the patients after studying them; Dibble added that the USPHS “would furnish the necessary dressings, cotton, X-Ray films and the Neo-Salvarsan for any treatment given.”17
High-level planning for the study was already in process. There were two major sponsors. One was Dr. Joseph Moore, of Johns Hopkins University, a leading student of venereal disease who was then writing his treatise The Modern Treatment of Syphilis. The other was Assistant Surgeon General Taliaferro Clark, who led the U.S. Public Health Service’s Venereal Disease Division. On September 28, 1932, Dr. Moore sent Assistant Surgeon General Clark a comprehensive plan to combine research with cures. He suggested setting aside those patients who could give a definite date to the beginning of their infection. They would receive an extensive examination and workup to determine whether and how much their bodies had been damaged; then they would be given medication in hopes of curing the disease. The remainder, who could not date their infection, would skip the workup and proceed immediately to treatment.18 Given the state of the art as it then existed, this would have been a humane approach. Patients would also have been given a number of incentives to participate. First, of cou
rse, would be treatment for their disease. Beyond that, there would be free medical care at a point in time when medical care was a luxury.19 Participants also were given rides in automobiles, a rare luxury for black sharecroppers in the 1930s, hot meals at the hospital, and (later in the study) an allowance for burial expenses.20 Yet even at this early stage, the study arrangements had an ominous undertone that suggested the study participants were being seen as experimental subjects rather than as human patients. The participants were never told that they had syphilis. At most, they were told they needed treatment for “bad blood” (a meaningless term from centuries ago, but which was still current in the rural south). They were given an iron tonic and sometimes pills that were actually aspirin.21
Dr. R. A. Vonderlehr of the USPHS was put in charge of the project. He wrote Dr. Clark, estimating that five hundred patients were already receiving treatment, and making plans to recruit new volunteers for the study as participants were cured: “The completion of the course of arsenic [Salvarsan] will automatically eliminate large numbers of patients each month, equalizing the new numbers acquired.”22
The costs of this approach quickly became a problem. In January 1933, Assistant Surgeon General Clark wrote to Dr. Vonderlehr: “It never occurred to me that we would be called upon to treat a large part of the county as a return for the privilege of making this study.” While treatment would continue (if only as the price of getting volunteers for the study), Clark called for limiting its cost “as greatly as can be done without prejudice to our study.”23 The patients came to be given eight doses of Salvarsan (instead of the standard twenty doses), plus “more or less of heavy metal” (bismuth or mercury).
The eight-dose plan was cheaper but almost useless in curing the patients. Diagnostic Wassermann tests given to “treated” patients revealed that 97 percent were still positive for syphilis.24 This does not seem to have disturbed anyone: the object of the treatment had become to get people in so they could be studied, not to treat and actually cure them. The administrators of the study were, consciously or unconsciously, beginning to treat the volunteers not as patients but as experimental lab animals, as numbers to be manipulated for the good of science.
The purpose of the initial phase of the study was to establish a baseline for the persons being studied. One test procedure was deliberately delayed to the end of the initial phase: conducting spinal taps to determine if neurosyphilis was beginning to develop. This required insertion of a needle into the spinal canal to retrieve some cerebrospinal fluid. The tap itself is painful, and its aftermath is often worse: days or weeks of terrible headaches as the brain, deprived of some of the cushioning given by the cerebrospinal fluid, bumps the inside of the skull. The Tuskegee subjects were given one night in the hospital after the tap and then driven home down rutted dirt roads.
This procedure was saved for last, lest those experiencing it lose enthusiasm for the study, and deception was used to get the patients involved. Dr. Vonderlehr explained to Assistant Surgeon General Clark: “The idea of bringing them in large groups is to get the procedure completed in a given area before the negro population has been able to find out just what is going on…. [D]etails of the puncture procedure should also be kept from them as far as possible.”25
Vonderlehr later admitted he planned to “rush through all the punctures as rapidly as hospitalization will permit because if sufficient time is permitted to elapse for news of reactions to spread before a neighborhood is completed the remaining patients will default.”26
When the time came, letters were sent to each patient announcing they were being given their “last chance to get a second examination.” The letter continued, “This examination is a special one and after it is finished you will be given a special treatment if it is believed you are in a condition to stand it.” Some were told the spinal tap was actually an injection of medicine.27 The rushed spinal taps were quite painful; some patients required two or three “sticks” to get the fluid, most experienced terrible headaches, and at least one had temporary paralysis.28
An uninfected 201 men chosen as controls, and 399 infected but untreated volunteers, had been examined, x-rayed, and if infected, had had their symptoms recorded and correlated to the duration of the infection. The USPHS had gotten the data it desired, although 97 percent of the infected patients were left with a potentially fatal and untreated disease.
THE STUDY’S NADIR: INADEQUATE TREATMENT BECOMES NO TREATMENT AT ALL
In April 1933, Dr. Vonderlehr wrote to Dr. Clark to outline a new idea: deliberately leave the patients with no further treatment at all, follow them over the years, and find out what the disease did to them in terms of death and destruction. Think of what science could gain!
At the end of this project we shall have a considerable number of cases presenting various complications of syphilis [with patients] who have received only mercury and may still be considered as untreated in the modern sense of therapy. Should these cases be followed over a period of five to ten years many interesting facts could be learned regarding the course of complications [of] untreated syphilis. The longevity of these syphilitics could be ascertained, and if properly administered I believe that many necropsies [autopsies] could be arranged…. [I]t seems a pity to me to lose such an unusual opportunity.29
Dr. Vonderlehr wrote this before penicillin became known as an easy cure for syphilis, but Salvarsan was available. Even in this period, to quote from an article in The Medical Bulletin, it was “no longer justifiable to withhold specific therapy from patients with cardiovascular syphilis, even when the situation seems hopeless; for treatment can be adjusted so as to do no harm to the patient and good results may be obtained.”30
What would be done to the Tuskegee participants may be contrasted with what was done for Al Capone, America’s most murderous gangster, while the Tuskegee study was under way. When Capone developed tertiary syphilis, the Alcatraz Bureau of Prisons doctors gave him forty doses of Neosalvarsan and forty-two doses of bismuth.31 Sitting in Alcatraz, the infamous gangster was receiving the medical treatment that the USPHS was withholding from its Tuskegee patients!
In July, Dr. Vonderlehr wrote Dr. O. C. Wenger, who headed the USPHS office in Hot Springs, Arkansas, stating that he had presented his plan to the Surgeon General, and believed it would be approved. Wenger replied with suggestions to minimize costs: “As I see it, we have no further interest in these patients until they die.” (Emphasis in the original.)
Wenger suggested they request any local doctors, from whom a subject of the study might request treatment, to refer the subject to Tuskegee, thus ensuring that a complete record of their medical condition would be in one place, and that after a patient died there would be “more time to persuade a family to have a postmortem performed.” Yet Wenger added a caveat:
There is one danger in the latter plan and that is that if the colored population becomes aware that accepting free hospital care means a post-mortem, every darkey will leave Macon county and it will hurt Dibble’s hospital [Tuskegee]. This can be prevented, however, if the doctors of Macon County are brought into our confidence and requested to be very careful not to let the objective of our plan be known.32
There were only ten medical doctors in all of Macon County, making it easy to get such an agreement. Wenger took matters a step further. The sharecroppers trusted the federal government and respected its employees, so Dr. Dibble, medical director of the Tuskegee Institute, received a nominal USPHS appointment. Dr. Wenger wrote: “One thing is certain. The only way we are going to get post-mortems is to have the demise take place in Dibble’s hospital and when these colored folks are told that Doctor Dibble is now a Government doctor too they will have more confidence.”33
One problem remained. The whole purpose of the study was to track the sickness and death inflicted by untreated syphilis. But the human beings who were its subjects were not always cooperative with this goal. As the years passed they got sicker, and some seemed to take a dim view of
dying of dementia or from a burst aneurism. They tried to get real treatment for their ailments, sometimes from doctors who hadn’t been tipped off to the study and were willing to give them real medication. The USPHS staff sought to block such interference. Dr. Reginald James, a USPHS doctor working in Macon County, later told the New York Times of his experiences:
I was distraught and disturbed whenever a patient in the study group appeared…. I was advised the patient was not to be treated. Whenever I insisted on treating such a patient, he never showed up again. They were being advised that they shouldn’t take treatments or they would be dropped from the study. At that time certain benefits were proffered the patients such as treatment for other ailments, payment of burial expenses, and a $50 cash benefit. To receive these benefits, the patient had to remain in the study.34
A bigger threat to the study loomed as World War II broke out, and the military got in the way. In 1942, Dr. Vonderlehr received a letter informing him that military draft boards were requiring that draftees take syphilis tests and, if infected, be given treatment. Vonderlehr responded:
Some time ago Doctor Murray Smith wrote to me about this matter. I suggested to him that he confer with the chairman of the local Selective Service Board, Mr. J. F. Segrest, and explain to him that this study of untreated syphilis is of great importance from a scientific standpoint. It represents one of the last opportunities which the science of medicine will have to conduct an investigation of this kind.
Doctor Smith replied that he had furnished the local board a list containing 256 names of men under 45 years of age and asked that these men be excluded from the list of draftees needing treatment. During his conference with the board they agreed to this arrangement …35
By 1942, everyone who was found with syphilis was being treated, so the Tuskegee subjects (we can hardly call them patients at this stage) were dying and being ruined to obtain knowledge that was of no conceivable future value.