Excerpt from The Invisible People by Greg Behrman, plus links to reviews, author biography & more

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The Invisible People

How the U. S. Has Slept through the Global AIDS Pandemic, the Greatest Humanitarian Catastrophe of Our Time

By Greg Behrman

The Invisible People
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  • Hardcover: Jun 2004,
    304 pages.

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Like most of his colleagues at CDC, McCormick had been intrigued by the new illness ever since June 5, 1981, when the CDC Weekly Morbidity and Mortality Report chronicled strange cases of cancer, primarily in younger to middle-aged homosexual men in New York City and Los Angeles. Little of the science behind the disease was known. What was known was that all of the patients' immune systems seemed to have deteriorated to the point of dysfunction. Tests revealed that at their death, patients had a shockingly low store of what are medically described as T-cells, or thymus-derived cells. These microscopic cells function as the intelligence agent of the body's immune system, identifying invading pathogens and signaling the rest of the immune system to respond. Without these cells, patients became helplessly vulnerable to opportunistic infection or disease.

Through 1981 and '82, the ranks of the disease's victims in the United States swelled to the hundreds and pushed close to one thousand. Doctors could do almost nothing except watch as their patients drifted to their demise. Scientists were unable to identify the cause of the disease, its origins, how to test for it, how many people were infected, or how (with verifiable proof) it was transmitted. They knew only that it was lethal, and there was no cure.

Speculation far outpaced prudence, and as a consequence fateful mistakes were made early on. Because most of those early cases in the United States involved homosexual men, the disease had originally been designated in both health and media circles as gay-related immunodeficiency disease, or GRID. By 1982, as the health and scientific community struggled to achieve a more comprehensive and precise understanding of the disease and its dimensions, it was becoming clear that it was not simply a gay disease, or, as some called it, a "gay plague." Incidence had sprung up among intravenous drug users. By year's end a seven-year-old boy and an infant, both hemophiliacs, were also infected. In New York, Dr. Frederick Siegal reported that Mount Sinai's first "GRID" patient was a woman of Dominican descent. To health and science journalist Laurie Garrett, it seemed evident that "she, clearly, was not a gay man." Dozens of cases would spring up in New York and Miami in the summer of 1982, among both men and women of Haitian descent, all of whom seemed heterosexual and non-intravenous drug users.

While the questions far outnumbered the answers, the experts at CDC knew this new disease would not remain consigned to one subpopulation. It was transmissible via blood transfusion, and the evidence strongly suggested that it was transmissible via heterosexual contact.

In response to this evidence, the CDC, in August 1982, quietly dropped the "GRID" designation, replacing it with "AIDS." While the gay label would fall, the misperception and stigma in which it was conceived would linger -- a distorted prism through which wide swaths of Americans would perceive the disease through its flight.

In February 1983, the CDC reported the 1,000th case of AIDS in the United States. The disease was clearly on an alarming upward trajectory. Scientific uncertainty was tacitly abetting its rise. The thirst for findings and answers among the science and health community was acute.

Officials at the CDC and elsewhere in the scientific and health community had their hands full grappling for resources, and laboring to produce scientific insight. As a consequence, no one in the U.S. science or public health establishment had given substantive thought to the global dimension of this emergent and virulent disease.

Joe McCormick would change that in the summer of 1983.

Upon arriving back at CDC headquarters in Atlanta, Georgia, following the health conference, the first thing McCormick did was to seek out Dr. Jim Curran. Curran, then thirty-eight years old, was a staid, mild-mannered, though politically savvy Ivy League CDC veteran of more than ten years. He was a family man, with a wife and two kids. Nothing in Curran's accomplished career at the CDC could have prepared him for the mantle he assumed as head of the Center's AIDS Task Force. He would find himself in the eye of some of the fiercest scientific and political battles ever attending any matter of health, science, or disease in U.S. history. Already a party to some of those maelstroms by the summer of 1983, Curran was desperate for hard data that might yield answers to the plethora of questions that still abounded.

McCormick relayed the chance encounter with Desmyter in Arlington. He told Curran that he wanted to lead a CDC-sponsored investigation into the heart of Zaire to test his hypothesis, and, if he was correct, to explore the dimensions of the disease in Africa.

Curran consented immediately. If McCormick found AIDS in Africa, and it had been there for some time, he would be able to unearth answers that had so far eluded Curran and his team: the disease's origins, its incubation period, and most importantly its definitive mode(s) of transmissibility. Curran assured McCormick he would have the financial and technical support needed to conduct the six-week investigation in Kinshasa.

While McCormick was eager to shed light on those big questions, and help Curran advance his agenda, there was much more to it. If his intuition was on target, there were thousands, quite possibly tens or hundreds of thousands, of AIDS victims in Africa. African leaders had to know about it. The world had to know about it.

McCormick enlisted Sheila Mitchell, an experienced virologist well schooled in administering and assessing blood samples, to join him. Shortly before leaving, he got a call from John Bennett, the head of the epidemiology program at the CDC, asking him to link up with other interested parties. Among those with whom McCormick would soon join forces was Dr. Peter Piot, who was leading a Belgian team with the same agenda. Then in his mid-thirties, Piot had already earned an international reputation as something of a prodigy, making his mark on the same Ebola investigation that had brought McCormick to Zaire in 1976. McCormick knew, respected, and was fond of his younger, passionate colleague. Piot, it turned out, like Desmyter, had seen African AIDS cases in Belgium, and he had made the connection, perhaps even before McCormick.

The American-Belgian team arrived in Kinshasa in mid-September. On each of McCormick's sojourns in Zaire's capital, it seemed there was always a fresh crisis of some sort brewing. This time there had just been a massive devaluation of the Zairean currency. McCormick, Piot, and his colleagues felt like "mafiosi" as they strolled out of their hotels with suitcases full of money on their way to a Greek restaurant to go over the team's strategy the night of their arrival.

The next day McCormick met with Zaire's health minister, Dr. Tshibasu, a tall man with graying hair who cut an elegant and somewhat reserved figure. McCormick's reception was cordial, but stern. Tshibasu asserted that existing health issues -- including malaria, malnutrition, diarrhea, tuberculosis, sleeping sickness, and measles -- were already overwhelming the national health system. He would be happy to cooperate, but he warned in polished French, "Don't count on finding much interest or support from us for the problem you are interested in....We can't even cope with the ordinary problems I just told you about."

With Tshibasu's consent, the team was afforded comprehensive access to Mama Yemo Hospital, named after the mother of Zaire's former dictatorial leader Mobutu Sese Seko, in Kinshasa. One of the nation's largest health facilities, Mama Yemo was a vast structure with high, rusting tin roofs and dark cement floors stained, McCormick would write, with "countless miseries." Each ward was able to house about thirty beds. Most of the mattresses were stuffed with cotton and grass, and many wards didn't have mattresses at all. There were few bathrooms, and they rarely functioned. Fitful moans and wails punctured the heavy African air that wafted through Mama Yemo, echoing throughout the hospital's halls.

On their first day at Mama Yemo, the team moved through the hospital's wards examining patients. It would be weeks before Sheila Mitchell could provide technical confirmation that the patients were infected with AIDS. But to McCormick, Mitchell's tests were almost academic. He could tell that AIDS had struck Kinshasa with impunity. He strode through the wards and counted dozens of women, their hair fallen out, unable to move, emaciated to fifty or sixty pounds, their faces "sallow and eyes sunken, lips studded with raw sores, tongues encrusted with yeast infection...livid, bulging blotches of Kaposi's sarcoma," a cancer of the blood vessels of the skin common in AIDS patients.

Among the sea of dying patients McCormick met during the investigation, none remains more transfixed in his memory than Yema, a twenty-one-year-old woman brought to Mama Yemo by her mother. Years before, Yema's family had moved from Zaire's rural hillside to La Cité, a sprawling and densely populated slum in the middle of Kinshasa packed with countless houses made of wood, tin, cement, mud, and cardboard, hoping to save some money to move on. With Yema's father gone for long stretches looking for work, the family was left behind to contend with want and hunger.

After the family had exhausted all of its options, Yema joined the thousands of other femmes libres in La Cité, exchanging sex for money, goods, or gifts. Her work provided food for her family, but by the time she was twenty Yema had already had two abortions. She had also contracted the virus that would later be dubbed HIV.

At first she had sick spells. Later the severe coughing and chills became incapacitating. Eventually, Yema could not rise from bed. She was a young woman, barely an adult, but physically unable to stand. Her mother had tried to care for her, she explained to the workers at Mama Yemo. But there was nothing more she could do, she cried, and so she brought her daughter to the hospital -- to die.

The hardened "disease cowboy" had to fight back tears "of anger and frustration" on more than one occasion. He had never seen anything as devastating, and there was absolutely nothing he could do about it. He clung to the one pillar of hope that would sustain and drive him: "if we could understand the processes we were observing, someone, somewhere, might find some solution."

Slowly, the data began coming in from Mitchell's blood tests, validating McCormick's worst fears. Mitchell's work provided McCormick with the proof he knew he would need to buttress his case back in Atlanta. It was a job well done. The immediate sense of satisfaction, though, gave way to a staggering personal remembrance: 1979 in Nzara, Sudan.

Of course, in that act of desperation back in 1979, McCormick had had his friend Roy Baron give him a transfusion with blood from Ebola survivors. The episode, he had presumed, was history, a tale to tell over whiskey on a ski trip or in the field with colleagues. But AIDS was flourishing in Africa. In trying to save himself from Ebola, had McCormick infected himself with AIDS? He had a familiar sinking feeling.

He had Mitchell test his blood. When the results came back negative, McCormick felt like he had won the lottery, twice.

With Mitchell's blood test results, there was no denying that AIDS had already become rampant in Kinshasa. But it wasn't just the disease's prevalence that struck the group. They noticed a roughly one-to-one prevalence ratio between males and females; that is, as many females were infected as males. Transmission, it appeared, had been occurring almost entirely through heterosexual contact. All of the surveillance work, interviews, and other epidemiology confirmed the fact. To the team it seemed irrefutable.

Immediately, the team moved to draft and publish the results of their findings, with Piot as the drafter and McCormick the senior author. Eager to share their groundbreaking findings with the international health community, they submitted the paper to The New England Journal of Medicine. The journal's peer review panel, however, rejected it. Another dozen or so journals similarly refused to publish the team's findings, all incredulous that the disease was heterosexual. To the team's outrage, the paper went unpublished for almost an entire year before it was finally included in The Lancet in July 1984.

Such a scenario was emblematic of the misperception that framed the international scientific community's discourse on the epidemic through the mid-1980s. Only months before McCormick and his team set out for Kinshasa, in April 1983, John Maddox, the editor of England's prestigious journal Nature, drafted an editorial entitled, "No Need to Panic About AIDS." He cautioned the scientific community not to exaggerate what seemed to Maddox a "perhaps non-existing condition," and chided the "pathetic promiscuity of homosexuals." Even prominent men of science were wont to reach hasty, stigma-laden conclusions. In those early years the facts were all too often subsumed in cursory judgments and ill-conceived contention.

The reception by the scientific community was as painful as it was perplexing to McCormick. His findings were not merely data points on a scientific paper, but images forever etched in his memory of human suffering, of young women emaciated to skin and bones, left alone to their demise. He was outraged, but compelled to press on.

Upon arriving home in Atlanta in early November, he sought out his old mentor, Dr. Bill Foege, the legendary, soft-spoken, but quietly forceful director of the CDC. Many years earlier, McCormick had done his residency under Foege. As director, Foege held a post that was scientific, but also political. McCormick admired Foege, estimating that few at his senior level were able to navigate between the two demands with greater dexterity and integrity.

Foege's directorship was coming to an end, though. Fortuitously, his replacement, a Reagan appointee named Dr. James Mason, was at CDC headquarters the day McCormick approached Foege with his findings. Foege perused McCormick's results. He was deeply alarmed. The team had demonstrated that AIDS had secured an ominous foothold in Africa. Most notable of the findings was that the disease was transmitted almost entirely through heterosexual contact in Africa. It had obvious ramifications for the burgeoning U.S. epidemic. It also meant that AIDS wasn't an issue for subpopulations in Africa -- the entire population was vulnerable. The worst-case scenario was imponderable. McCormick and his colleagues, it seemed, had discovered a pandemic in its nascence.

At CDC, things began to move with a sense of gravity and urgency. Foege convened an extended group of senior officials including Mason and Curran in his spacious office at CDC headquarters. They dialed the number for Dr. Edward Brandt, the assistant secretary of the Department of Health and Human Services, or HHS. With Brandt on the speakerphone, Foege turned the call over to his junior colleague. McCormick carefully spelled out the details of the investigative effort, the sort of research that had been done, the data, and the team's conclusions.

It took several minutes for McCormick to complete his presentation. He had woven, he estimated, an airtight yarn. The denouement arrived when McCormick declared: AIDS is rampant in Africa and it is heterosexual.

The group in Atlanta sat eagerly anticipating an answer. On the other end of the phone: a long silence.

Finally, Brandt spoke up. "I don't believe it," McCormick remembered him saying. "You must have got it all wrong....There must be another explanation for your findings." He asked if McCormick had considered other vectors, such as mosquitoes. In other words, could mosquitoes be transmitting the disease, as with malaria?

"Mosquitoes," McCormick later wrote, "were obviously easier for him to talk about than sex." The scientists in Atlanta were aghast.

No one on the Atlanta end of the call knew much about Brandt. They knew only that, like Mason, he was a Reagan appointee. It was an administration that campaigned on a conservative platform. And while Foege and others knew that Reagan's health and science officials had politically conservative backgrounds, they were unsure just how far and how deeply those conservative tentacles extended.

AIDS had become a political hot potato, and the Reagan administration's strategy, to the extent there was one at all, was to avoid it. The subpopulations suffering in the United States were not part of Reagan's constituency. AIDS was sexuality and death: not the stuff that politicians are wont to gravitate toward. If the disease was truly heterosexual, then it was a bigger problem (at least politically) than the administration had estimated. They would have to address it, and they didn't want to do that unless they had to.

Understanding the stakes, McCormick continued to plead his case to Brandt. "I don't think the evidence supports that, sir. So far we've found very little disease in children. And children get just as many mosquito bites as adults -- probably more," McCormick explained. "What we saw with the disease were definite chains of infection...clustering around sexual contact."

Brandt could not argue with the data, but, according to McCormick, he seemed "hell-bent" on settling on another theory to explain the disease's stronghold in Africa. The discussion went on for twenty minutes. Brandt proved immovable.

Foege hung up the phone. Dumbfounded, the group stared at each other, as if looking for confirmation that what had transpired had really gone on. It was, for McCormick, the grossest instance of politics over science and truth he had encountered in his career.

No one in Foege's office in Atlanta would yet know that in fact approximately forty thousand lives had already been lost, and 1 million infections had accrued around the globe.


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