by Mary Guinan
Broome felt vindicated. Not only were the study results sound, but also the charge of misconduct in science was refuted, as it was extremely unlikely that any scientist would deliberately miscode data that would produce the same results had they been coded correctly.
Even so, the political pressure was on from the lawyers. Calls from HHS to the CDC director continued with the question “When will the article be retracted from the medical journal?” This dispute would not be settled easily with sound science.
I suggested to the CDC director that we convene a panel of epidemiologists and biostatisticians from different parts of CDC to review the published study, the charges, and Dr. Broome’s response, and then make a recommendation for a course of action. A panel of five senior epidemiologists was selected. All the information was given to the panelists, and a meeting was to be convened within two weeks.
In the meantime, I received a call from Dr. Alex Langmuir, who was referred to me from the director’s office. He had wanted a private meeting with the CDC director. (Dr. Mason had been an EIS officer under Langmuir’s direction.) He was told that I was handling the issue for CDC and to call me. He was not pleased that he had been refused a meeting with Dr. Mason, and he wasn’t sure that I was high enough in the CDC hierarchy for him to spend his time with. I had never met him, although I certainly knew who he was. Langmuir was a veritable legend at CDC.
He told me that he had talked to a number of his friends at CDC, and they all had told him the same thing: he had to work with me. He asked if we could set up a meeting. I invited him to the panel meeting and also invited Dr. Kass and the expert consultants who had reviewed the study. CDC did not know the composition of their review team, and after a long discussion, Langmuir neither revealed any names nor made any promises to bring them to the meeting.
Langmuir arrived alone to the meeting, seemingly brimming with confidence. Besides the panel members, the other attendees included Broome and me and a representative from CDC’s General Counsel’s office. Langmuir knew many of the attendees and was quite cordial. After a thorough discussion by panel members, Dr. Langmuir stated his position that the coding errors were deliberate and the study should be retracted from the journal. When asked why the authors would falsify the coding if it did not change the results, he responded that the authors wanted to have the study published in a prestigious journal.
A discussion with a good deal of emotional intensity ensued. One panel member asked rather heatedly, “Alex, did you hear that the error did not change the results?” Langmuir disregarded the question and held his ground. I asked each panel member to make a statement of his conclusion and to recommend whether or not the study should be retracted. The panel members were unanimous in declaring the study sound and recommending against retraction.
I wrote a summary of the meeting and sent it to Jim Mason, who forwarded it to HHS. I assumed that this would be the end of the story, but it was not. There was a great deal of pressure on Mason for a private meeting with Drs. Kass and Langmuir. Eventually, Dr. Mason agreed to meet with them, but only if I were included. I asked that Verla Neslund from CDC’s General Counsel also attend because she had been advising me on the legal aspects of defending CDC.
The meeting took place in the director’s office. Dr. Kass took the lead. He stated that his primary concern was how harmful it would be to CDC’s reputation if it were sued for misconduct in science. Dr. Mason replied that his associate director for science had advised him that the study was sound and he would not recommend retraction. Kass then asked me a series of questions that had little to do with the study. He said he was not taking any money for his part in the lawsuit and he was putting his reputation on the line because of the seriousness of the CDC error. He asked me to think of how CDC’s reputation would be damaged forever.
Verla Neslund then spoke up. She said, “Don’t worry about CDC’s reputation; that’s our job. We are not worried about being sued. We’ve been sued before and know how to deal with it.” There was silence. The meeting was over. Afterward, I said goodbye to Dr. Langmuir, who replied, “See you in court.”
I told Claire Broome that she had to send a letter to the New England Journal of Medicine with notification of the correction of the coding error. She thought it unnecessary, but I insisted. She wrote the letter and received a response from the editor, who expressed confusion about why a formal correction was needed when it did not change the results. In the end, no correction was printed. I was thinking ahead to the trial and was just grateful to get the editor’s reply, which supported our case.
As months went by, the lawsuits against the grocery chain filed by the affected patients in the outbreak were bound for trial. During this time we also learned that Dr. Kass had a terminal illness. Before he died in 1990, he spent time giving depositions for the case to the milk lobby lawyers. Dr. Fleming, who led the epidemic investigation, was among the last to be deposed. Within a short time after his testimony, the lawyers announced that the lawsuits from the patients would be settled. Whether it was his testimony or other factors that pushed the lawyers to make this decision is unknown. The milk industry did not move forward with the lawsuit against CDC. We were all relieved that we did not have to testify. And the medical detective Dave Fleming eventually became the deputy director of CDC.
In 2007, another listeriosis outbreak linked to pasteurized milk occurred in Massachusetts, but this time the epidemic strain of Listeria was found in the milk. Evidence suggested that the milk had been contaminated in the dairy after pasteurization (2).
TWELVE
On Getting AIDS from a Toilet Seat and Other STD Myths and Taboos
MYTHS of how one acquires a sexually transmitted disease (STD) have persisted for centuries. And now, many years after I left CDC and forged another career in Nevada as the state’s health officer and then founding dean of the School of Public Health at the University of Nevada, Las Vegas, I am amazed and somewhat disheartened that these myths persist as strongly as ever.
A look at a 2009 national survey on knowledge about human immunodeficiency virus (HIV) transmission illustrates the point: 17 percent of respondents believed transmission can occur from contact with a toilet seat (1). This belief persists despite the evidence: highly trained public health epidemiologists in every state in the United States have tracked the source of infection of more than a million HIV/AIDS patients for thirty-four years, and as of 2015 not a single case has been traced to a toilet seat. Yet myth often trumps scientific evidence.
In 1957, when the Venereal Diseases Division was transferred from the Public Health Service in Washington, DC, to CDC in Atlanta, it brought with it a cadre of workers called public health advisors (PHAs), who were specially trained in tracking the source and spread of STDs (2). PHAs worked within state health departments to assist in the control of STDs and to help set up surveillance systems for syphilis and gonorrhea. Between 1958 and 1981 (when AIDS emerged), PHAs tracked the source of infection of millions of cases of syphilis and gonorrhea and, again, not one was traced to a toilet seat.
When I was growing up in New York City in the fifties, each subway car had city health department ads warning of the dangers of syphilis and gonorrhea. One day, I asked an older friend what the ads meant. She whispered that they were about diseases that one “caught” from subway bathrooms and warned me never to even say those “awful words.” A taboo still exists about them. Sometimes I think it would be more acceptable at a social gathering for me to use the “F word” than to talk about syphilis or gonorrhea.
When I joined CDC’s STD unit in 1978, I learned a great deal from PHAs about their fascinating experiences in tracking the source of STDs. In the early years of the AIDS epidemic, I learned just how harmful the toilet myth and other associated jokes could be.
One day, a reporter from CNN called to ask my opinion on an ongoing controversy. Female workers at a small unit of an insurance company in Chicago were picketing the company because they were forced to use a bath
room with only one toilet. The women believed that one of their co-workers had AIDS, and they did not want to use the same toilet for fear of contracting the disease. The physician medical director of the company supported the women in their protest. I was stunned. I responded that no case of AIDS had ever been traced to a toilet seat and expressed my concern about CNN’s airing the story. The woman whose co-workers thought had AIDS was not only being unfairly targeted but also being publicly humiliated—whether she had AIDS or not.
The next day the reporter called back. The story had been carried in a Chicago newspaper, and CNN wanted me to give my opinion on camera. I declined because I believed it would be just another sideshow in the regrettably bad early media coverage of AIDS. But CNN persisted in its request, and the CDC media unit persuaded me to do the interview, although I was not happy about it. During the interview, the reporter asked whether I was absolutely sure one could not get AIDS from a toilet seat. I answered with a line that a PHA had given me: “The only way I know of that you can get AIDS from a toilet seat is if you sit down on it before someone else gets up.” With that, the interview was over. My response was somewhat flippant, and I regretted saying it (at least on television). I never saw the news clip, but many people did. I have often seen my quote in slide or PowerPoint presentations at medical meetings. A colleague once told me that this line would be my epitaph.
MYTHS THAT PERSIST
Before the germ theory of disease was recognized in the early nineteenth century, STDs were believed to be caused by either “bad humors” in the air or by God as a punishment for sin. By the early twentieth century, both the cause of syphilis (Treponema pallidum, a bacterial spirochete) and its primary transmission through sexual intercourse were well established. But the belief that syphilis and other STDs were a punishment from God persisted. STDs were perceived to be moral failures rather than health issues, and little sympathy existed for those afflicted. The shame and vilification of those with syphilis led many patients to hide their infection. Even if they sought help, many physicians refused to treat them.
Another common belief in the United States throughout the early twentieth century was that fear of contracting syphilis was a strong deterrent to “immoral” sexual behavior. Many physicians held this belief, even one of the founding four professors at the great Johns Hopkins Hospital, which had one of the first specialty clinics for syphilis treatment. Dr. Howard A. Kelly, professor of gynecology and obstetrics, wrote, “I believe that if we could in an instant eradicate the diseases [STDs] we would also forget at once the moral side of the question, and would then, in one short generation, fall wholly under the domination of the animal passions, becoming grossly and universally immoral” (3). Following this line of reasoning, physicians who treated syphilis were promoting “sin with impunity,” thereby contributing to the perceived increase in moral depravity of the population. The secrecy, stigma, shame, and lack of treatment for syphilis laid the groundwork for the worst syphilis epidemic in US history, in the late 1920s through the 1930s. The epidemic was ample evidence that fear of contracting syphilis did not result in a high rate of celibacy. But the United States has continued to promote this belief into the twenty-first century, as is evident through government-sponsored “abstinence only” sex education programs based on the idea that fear of STDs and unplanned pregnancy will scare teens into celibacy. None of these programs has shown evidence of effectiveness.
In his book No Magic Bullet, Allan M. Brandt described the social history of venereal disease in the United States from 1880 to 1985 (4). The magic bullet was a concept, advanced by Dr. Paul Ehrlich, Nobel laureate in medicine in 1908, that if a substance could be found that killed the disease-causing organism but was safe for the patient, then treatment of the afflicted patients would eventually eliminate the disease from the population. Ehrlich and co-workers began a search for a magic bullet to kill the syphilis spirochete. After testing 605 possibilities, they found “compound 606,” or arsphenamine (eventually named Salvarsan), which was effective for curing syphilis in rabbits. By 1910, Salvarsan was found to cure syphilis in patients and was soon mass-produced in Germany, becoming the most widely prescribed drug in the world. Great Britain and Scandinavian countries began government-funded national programs with free clinics for syphilis diagnoses and Salvarsan treatment. These health initiatives, unburdened by moral overtones, resulted in a dramatic decrease in syphilis in these countries. By contrast, the disease rates soared in the United States (5).
Brandt maintained that continuing controversies throughout the twentieth century—about religious beliefs, sexual mores, whether STDs were medical or moral issues, and whether STD control was a personal or societal responsibility—severely hampered syphilis control efforts. He concluded that if we continue the same approach—that is, implying that certain sexual behaviors are sinful, and STDs are the punishment—it will take much more than magic bullets to eliminate STDs (6).
The public reaction to the emerging AIDS epidemic in the 1980s eerily mirrored the response to syphilis control efforts earlier in the century. Many critics responded with statements such as “Why should public resources be spent on sinners, so they can continue their immoral lifestyle?” “Homosexuality is a sin, and AIDS is a punishment from God.” “Curing AIDS would only encourage homosexuality, resulting in a breakdown of social mores.”
But then the country was faced with the “innocents,” people who contracted AIDS nonsexually, including those with hemophilia, recipients of contaminated blood transfusions, newborns infected by their mothers, and heterosexual partners of intravenous drug users. Should they be treated differently from those who were considered sinners? Gay activists became a major force in demanding that AIDS be recognized as a deadly national health problem rather than a moral issue.
LESSONS LEARNED FROM PROGRAMS TO ELIMINATE SYPHILIS
Many dedicated physicians, public health programs, and progressive movements in the United States worked diligently to eliminate syphilis. One of the first and most prominent was Dr. Thomas Parran, a public health physician frustrated at the lack of an organized approach to the appalling syphilis epidemic in the early twentieth century. Parran was essentially ignored until 1930, when Governor Franklin Roosevelt appointed him as the New York State health commissioner. Parran spent much of his time trying to gather information on the burden of STDs and their associated healthcare costs. He considered syphilis the most serious public health problem for not only New York but also the entire nation.
In 1934, Parran was scheduled to give an address on CBS radio on the “state of the health of New York.” A few minutes before the program began, CBS executives told Parran that he could not use the words syphilis or gonorrhea in his talk. He refused to go on the air and, angry at being censored, he released his speech to the press. Despite taboos on the use of “those words,” many prominent newspapers printed the speech, causing a public furor. Parran later lamented that “among American handicaps to syphilis control is the widespread belief that nice people don’t talk about syphilis, nice people don’t have syphilis, and nice people shouldn’t do anything about those who do have syphilis” (7). Dr. Prince Morrow, an American dermatologist, sociologist, and leader in the earlier progressive movement to control STDs in the late nineteenth and early twentieth centuries, expressed similar frustrations: “Social sentiment holds that it is a greater violation of the properties of life publicly to mention venereal disease than privately to contract it” (8).
Parran criticized the members of the New York Senate who voted against changing the name of the Department of Health’s Division of Social Hygiene to the Division of Syphilis Control and especially the two senators from New York City who spoke against this change, one of them saying, “this bill would only be giving our children a new word to talk about. It is not decent or necessary.” In reply, Parran “respectfully called to the attention of the senators” that 67,010 cases of syphilis (clinically and laboratory diagnosed) were reported in New York
City alone in 1936. He then compared syphilis cases in that city with those in the country of Sweden, which had approximately the same population (over six million people). In 1935, New York City had over 35,000 clinical cases of syphilis; Sweden had 399. Parran wrote, “If an enemy with troops and battleships were attacking both Sweden and the U.S. and killing ninety of our citizens for every Swedish fatality, perhaps even [the senator] would be willing to mention the name of this enemy in order to rouse united public action against it” (9).
THE SYPHILIS EPIDEMIC OF THE 1930s
Franklin Roosevelt became president in 1933. Unlike many of today’s political leaders, Roosevelt was interested in attacking the venereal disease problem. (Ronald Reagan, who was president when the AIDS epidemic emerged, refused to say the word AIDS or provide federal funding for the control of that disease until several years into his administration, when his friend Rock Hudson died from the disease.) Roosevelt appointed Parran as US surgeon general in 1936 (he served until 1948), and Time magazine put his picture on the October 26, 1936, cover for his efforts to control syphilis.
Parran’s landmark book Shadow on the Land: Syphilis was published the following year. In it, he estimated that the prevalence or total number of existing syphilis cases in the United States was more than six million, and that one in ten adults either had syphilis or would get it unless the disease was brought under control. The estimated number of new cases each year (annual incidence) was 518,000.
Untreated syphilis infection lasts a lifetime and has four stages. The first stage is a painless ulcer or chancre, which occurs where the organism entered the skin. This chancre is full of spirochetes and can penetrate skin or mucous membranes that touch it. After a few weeks, the chancre heals spontaneously, but by then the spirochete has spread to virtually all organs of the body. Persons with syphilis may feel that they are cured, but within a few weeks, the second stage arrives, with a skin rash and aches and pains resulting from the ongoing damage to the heart and eyes, brain, liver, and kidneys. The patient’s symptoms might include fever, headache, joint pain, and a rash. The rash occurs on the skin, in the mucous membranes of the mouth and genital area, and even on the palms of the hands and the soles of the feet. Wherever the rash is, its pustules are filled with tiny spirochetes, which can jump to another person’s skin if touched. Then follows stage three, a period of latency, when the disease again becomes invisible but the spirochetes are internally destroying eyes, aortas, brains, and the unborn. The fourth stage (tertiary syphilis, so named because it is the third symptomatic stage) doesn’t occur in all cases, but when it does, some ten to twenty years later, the symptoms include insanity, blindness, heart disease, and many other problems.
