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 by Greg Behrman X
The Invisible People by Greg Behrman
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    Jun 2004, 304 pages

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With Foege's blessings, and McCormick's drive and gumption, leadership at the CDC persevered, intent on continuing the international effort that had been started. They were professionals. They were, perhaps, too professional.

With budget slashing the order of the day, all areas of the federal health effort were under siege, and the CDC was no exception. Foege calculated that he would be better off moving things around and making do with existing resources, rather than taking on a controversial and still largely unknown disease, and perhaps risking further cuts and wrath from the executive branch.

As public health officials went, Foege was a deft political operative. But he was able to measure himself against a very low bar in that regard. America's leading scientific and health officials were trained in science, medicine, and public health and were among the foremost technical experts in those fields in the world. Those who rose to positions of stature and power in public health and science, though, were generally ill schooled at the sort of political advocacy necessary to secure the resources and political capital they needed to effectively do their job.

The episode in the fall of 1983 was a classic instance. Foege and his entire team did the best they could within the system, but no one sought to jolt the system. No one cultivated relationships with the media or used it to scream about the team's findings or the significance of the disease's stronghold in Africa, the disturbing global dimension that had just been discovered. They did not forcefully lobby the administration or seek to galvanize domestic political constituencies to the issue.

Of course they were facing a panoply of problems and constraints: their budget was under siege, they did not have their own administration's support or leadership, they were struggling to amass resources for the wide range of prevalent U.S. domestic health problems, including the domestic AIDS epidemic brewing in the United States, and relatively little was known about the international dimension at the time.

McCormick would later assert that "by steadfastly refusing to acknowledge the true dimensions of the AIDS crisis, the Reagan administration made itself an ally of the virus." Brandt's negligence struck an ominous note at a seminal juncture.

It was a cause, in 1983, in search of a political champion.

On the memorably inauspicious morning of April 23, 1984, HHS Secretary Margaret Heckler stood at the podium at the department's headquarters in Washington, D.C., with Dr. Robert Gallo in tow, wearing a wide and sprightly smile. Gallo, the director of the eminent National Cancer Institute and one of the world's foremost experts on retroviruses, had earned his spot in the limelight next to Heckler, she announced, because he had officially "discovered" the virus that causes AIDS. It would be dubbed, shortly thereafter, the human immunodeficiency virus, or HIV.

Heckler's unbridled enthusiasm seemed to give the announcement great occasion, as did her buoyant pronouncements. "Today's discovery," she proclaimed, "represents the triumph of science over a dreadful disease." She suggested that the discovery would pave the way for a vaccine that would be ready for testing within two years.

Wild miscalculations would continue to abound through the year that followed.

In the summer of 1984, the McCormick/Piot article would be released in The Lancet. In addition, a handful of prominent epidemiologists had been drawn to the global dimension of the disease. One of them was Dr. Robert Biggar, who published a set of very bold estimates in The Lancet in that same year. Many more would follow, including Gallo himself.

The World Health Organization, or WHO, on the other hand, had extricated itself from global AIDS. An internal 1983 WHO memorandum stated that AIDS "is being well taken care of by some of the richest countries in the world where there is the manpower and the know-how and where most of the patients are to be found." It was of course, a grossly mistaken presumption on all accounts. WHO would have been a logical clearinghouse for the science -- estimates of incidence and features of the disease, for example. Without WHO's participation, disparate sets of teams set out, intent on capturing data on the global dimension. The results would be divergent, leading to contention and chaos.

In April 1985, the CDC organized what would become the first International AIDS Conference, to be held in Atlanta, Georgia. It would attract approximately two thousand scientists, public health officials, and journalists, brought together with the aim of sharing knowledge, and reaching common ground and consensus.

Peter Piot had been working on a CDC-sponsored AIDS longitudinal study that McCormick had helped to set up in Kinshasa. Studying the disease in Africa, Piot had developed a keen sense for the urgency of the problem brewing. He was ecstatic about the opportunity in Atlanta. Piot had even encouraged several of his African colleagues to make the long journey. He believed that the experience would be of value in their work, and that their perspective would enrich the proceedings.

As the scientists took to the stage to present their findings, Piot watched, befuddled. Some of the world's most prominent scientists were presenting estimates of incidence of HIV in Africa that were absolutely stratospheric, off the charts. Some estimates purported that in certain regions of Uganda, children tested 66 percent positive for the virus; others suggested that 88 percent of the female prostitutes in Rwanda carried the virus. Robert Biggar of the U.S. National Cancer Institute estimated that between 1982 and 1984, roughly half of the Kenyan population had been infected with the disease.

Piot had hoped that the international scientific community would acknowledge the severity and magnitude of the epidemic. He had been living in Africa for a year and he knew from firsthand experience, however, that the numbers presented here were gross overestimations. Confounded and despondent, Piot kept a close eye on his African colleagues. Their goodwill and support was the bedrock upon which his presence was made possible in Zaire.

When Harvard scientist Max Essex averred that the origins of the disease could be traced back to monkeys in central Africa, Piot's trepidation grew. Sure enough, a group of journalists found their way to Piot's African colleagues and asked them, "Is it true? Do Africans have sex with monkeys?" The African scientists were aghast.

Hours later, sitting alone in a stairwell, Piot was utterly dejected. "This is a disaster," he said to himself.

Shortly after the conference it would be verified that almost all of the estimates proffered were wildly erroneous. The blood tests used -- still terribly unrefined and clearly inadequate -- yielded positive results for traces of malaria and other unrelated pathogens. All of these cases were captured in the results, inflating the AIDS estimates. Almost all of the African populations tested had, at some time, been exposed to malaria in varying capacities. It was a wonder, then, journalist Laurie Garrett wrote, that the estimates did not report even higher levels of incidence.

The immediate reaction was panic -- it seemed all of a sudden that the continent was about to erupt in a terrible conflagration. While the inaccuracy of the estimates would be redressed in short order, the social and political fallout of the conference would generate debilitating consequences that would reverberate for years to come. The inflated estimates would breed skepticism among U.S. policy makers, the public health establishment, the media, and the public.

On the African side, political leaders, ever sensitive, particularly in light of the imperial legacy and the stereotypes they knew to abound in the West, grew incensed at the false estimates. "African AIDS reports are a new form of hate campaign," Kenyan President Daniel arap Moi fumed. Already grappling with crises like drought, famine, civil war, poverty, and a panoply of existing health issues, African leaders were furious about western scientists grandstanding and painting a near apocalyptic depiction of Africa. The inflated estimates would plant seeds of skepticism that would help breed denial among the continent's leaders for the next decade and a half. African denial would, in turn, serve as a crutch for U.S. inaction.

When the estimates were later brought down to single-digit incidence rates, the immediate reaction was one of relief -- "It's not as bad as we thought." With that sentiment as an undercurrent, what little attention Africa had garnered was seamlessly redirected within America's borders, where incidence was escalating precipitously.


While no one could claim a commanding grip on the magnitude of the pandemic, by 1986 certain progress had been made. The misestimates proffered in Atlanta had been debunked and more reasonable and accurate ones offered in their place. The research effort that McCormick had worked to establish in Kinshasa, Zaire, had been up and running since the middle of 1984. Called Project SIDA (the French acronym for AIDS), it was yielding a great deal of useful data. Finally, WHO had taken up the issue and established the Special Program on AIDS, or SPA. Its leader, Dr. Jonathan Mann, would in time become a pioneer and a legend. Already by 1986, he was a credible and forceful advocate for the world's response to the pandemic.

Despite the Reagan administration's continued refusal to address the disease, Congress was able to ensure that funds for the domestic epidemic were scaled up. Priority number one was vaccine development. A vaccine would, of course, have positive ramifications for the global dimension of the disease, but the politics and constituencies driving the effort were almost entirely domestic-centric. The global dimension was not considered at all, and had received entirely no funding or political leadership.

That would change in 1986. A small handful of figures in the Congress were starting to take notice. Primarily through the efforts of Pat Leahy, the towering, gray-haired senator from Vermont and a staunch internationalist whose politics leant to the left, Congress was able to appropriate an inaugural sum for global AIDS.

By the end of that year a quarter of a million people had died of AIDS worldwide. Almost 4 million had been infected with HIV. The total U.S. appropriation for global AIDS in 1986: $2 million.

Leahy and other early champions, including Representative David Obey from Wisconsin, knew that it was a woefully inadequate amount. But the White House was entirely disinterested, if not averse, to the effort, and it was notoriously difficult to create any new line item on the budget, particularly in the foreign assistance bucket. It did not help that this was taking place against the backdrop of the gaping deficits being generated under Reagan's aggressive supply-side economic plan. It was, they hoped, a start. And a most needed one at that.

But where would it go?

Now that Congress had appropriated the money, what branch of the government, what department or agency, would tackle global AIDS? There was no one obvious candidate.

In time, AIDS would begin to eviscerate national economies. At the outset, however, the Treasury Department, the area of the U.S. government empowered to oversee matters of international finance and economic development, was not interested. Treasury had its hands full managing what were becoming unprecedented budget deficits. In the Reagan era, framed by the Cold War, "globalization" had yet to catch on. The world was still divided into two camps, and the idea that the world's economic well-being was interwoven among all the world's nations was weak in currency. Officials weren't accustomed to thinking in terms of "nontraditional" economic issues like health or the environment.

At the Department of Defense, Reagan's hawks had their hands full defeating the "evil empire." Managing the U.S.-Soviet great power rivalry and the NATO alliance, building up the U.S. missile arsenal, developing Star Wars and deploying U.S. intermediate range ballistic missiles in the European theater kept Defense busy through the mid-1980s. In a prescient 1980 article in Foreign Affairs, entitled "Redefining Security," Richard Ullman argued that the strictly politico-military conception of "security" ignored other pressing "nontraditional" security issues. In time, forward thinkers would emerge willing to push Defense to revisit Ullman's call for a "redefinition" to include threats such as global AIDS. In the 1980s, though, the idea was ahead of its time.

As the diplomatic arm of the U.S. government, the State Department was able to highlight and prioritize emergent international crises and champion resource allocation for them. It was able to press foreign leaders to engage matters of import to the U.S. foreign policy agenda. Yet few at State, even through the late 1980s, demonstrated serious interest in upgrading U.S. policy to tackle the burgeoning pandemic. A handful of ambassadors voiced concern through the State hierarchy on several occasions. But they were more the exception than the rule. At a critical point in the Cold War and on the eve of a "New World Order," U.S. diplomatic capacity was stretched and focused elsewhere.

In the late 1980s, the Soviet Union, East Germany, and their satellite "minions" launched a propaganda campaign in Africa, claiming that the CIA had created the disease to kill black Africans. Leaders at State's Africa Bureau were shaken by cables that seemed to forewarn of "apocalypse," but they spent more time and energy digesting the reports and debunking the Soviet-led propaganda campaign than pressing for U.S. involvement or spurring African leaders to lead. State wasn't opposed to U.S. engagement, one bureaucratic operative explained, "it was more benign neglect."

The Department of Health and Human Services, or HHS, seemed to many the logical place to house the U.S. response. HHS, though, would join the leading U.S. departments in passing the proverbial buck on global AIDS.

Among the most stung, HHS found itself waylaid by the Reagan budget cuts. Assuming office, Reagan proclaimed, "Government doesn't solve problems, it subsidizes them." Adhering to his mantra, Reagan eviscerated the funds available to the department responsible for the health of the American people. From 1981 to 1983 Reagan slashed the HHS budget by approximately 25 percent. Amid the siege, HHS was doing all it could to fight America's biggest killers, heart disease and cancer. The domestic AIDS epidemic was thrown into the mix at a time that was less than propitious. The Department was overwhelmed.

Importantly, HHS's official mandate extends only so far as matters of "domestic" health. Paul DeLay, a longtime U.S. health official, later to become a leader in the U.S. response, remarked: "HHS was seen as not only not having the mandate, but not really understanding what was involved....They didn't have the experience [necessary to tackle the problem]. How many people," DeLay asked, "at HHS have passports? How many had been to Africa?"

There was an arm of HHS, though, that was brimming with rough and tumble "virus hunters" who had spent more than their fair share of time in Africa and other international locales. The CDC is the United States's center of technical excellence for disease surveillance. "Bug busters" like Joe McCormick had been all over the earth, searching for and combating emerging and reemerging infectious viruses. They knew how to identify them, how to conduct surveillance, and, when possible, how to control the outbreaks.

But CDC, like HHS and all the other aforementioned departments, had no international mandate per se. Dr. Kenneth Shine, former president of the Institute of Medicine, explained, "CDC has no international surveillance responsibility. The CDC operates under the assumption that if an outbreak of something occurs they will be called in to investigate." But international surveillance, let alone intervention, strictly speaking, was not a mandatory responsibility.

The calculus to fly McCormick and his colleagues halfway around the world and sponsor their investigations was generally driven by U.S. national interests. If there was an outbreak, even in a faraway locale, it behooved the U.S. scientific community to know about it so that they would be well schooled in the threat and thus able to protect the U.S. population at home and abroad. Funds were tight and humanitarian efforts were a luxury, not the norm. Congressional oversight generally saw to that. American taxpayers, after all, were funding CDC's activities.

"In the beginning," Dr. Helene Gayle, an African-American woman who would later oversee the CDC's global HIV/AIDS effort, explained, "because CDC primarily has a domestic mandate, a lot of what drove the ability to work in international settings was the fact that there were lessons to be learned from the international setting that could be used for domestic populations." The CDC would launch surveillance efforts in Zaire, and later Côte d'Ivoire and Azerbaijan. The CDC's surveillance work would yield insights that would benefit developing nations as they fought the pandemic in their own backyards. But the impetus driving the CDC's engagement had its origins in a domestic mandate and U.S. concerns.

There was a sense, anyhow, that the CDC was equipped to conduct surveillance and do research, but that was where their competency ended. What was needed abroad, global AIDS advocates argued, was intervention.

The CDC may not have been "set up" to lead interventions, but they had done it in the past, and they had done it with astounding success. Counters Dr. Jeffrey Harris, a CDC official at the time, they "did it on smallpox, did it on diarrhea and immunization. They had done a good job."

AIDS demanded a more ambitious intervention, though, and resources were scant. Initiating an intervention effort would have been, or at least was perceived as being, extramandatory. CDC figures like Helene Gayle would expend a good deal of energy through the late 1980s and 1990s trying to expand CDC's efforts. But until the late 1990s, global AIDS was viewed as only one emergent health issue among a vast panoply of diseases and sicknesses already claiming millions of lives a year.

Early on, CDC's leadership could muster neither the foresight nor the political will or ingenuity to marshal the resources and political support to broaden its range of involvement. A decade and a half later, the CDC, like its parent department, HHS, would join the State Department in a loud chorus pleading for resources to expand its efforts in fighting the pandemic. At the moment, though, when their engagement might have done the most to preempt the pandemic's global explosion, all of these centers of government were willing simply to pass the buck. And the buck -- all 2 million of them -- would stop, it turned out, at the United States Agency for International Development, or USAID.

USAID was created by the Kennedy administration in November 1961 to provide developmental assistance to countries in need. Like the Peace Corps, it was an outgrowth of the "New Frontier" ethos of international service. The agency was quickly consumed, though, by the geopolitical context into which it was born. All major U.S. international initiatives during the Cold War were to a great extent either a function of, or greatly influenced by, the overarching U.S. foreign policy imperative of the epoch: containment of the Soviet Union.

USAID, though perhaps born of a noble impulse, would prove pervious to that phenomenon. USAID's grant making and developmental assistance functions became yet another weapon in the U.S. arsenal to fight the Soviet Union. Grants and assistance were doled out not on the basis of need, but to countries friendly to the United States. Assistance was used as leverage both to keep countries in the U.S. camp as well as to woo countries away from the Soviet bloc.

Confusing the agency's mission further, it would come to award hundreds of millions of dollars in contracts to U.S. companies or nongovernmental organizations (NGOs). As such, a veritable cottage industry grew around the agency, competing for money and becoming a political lobby in the beltway.

Financed with billions of dollars a year, and with missions and deeply dedicated foreign officers, the agency was able to do significant good all over the developing world. By the mid-1980s, however, the agency's clarity of mandate, its operational efficiency, its credibility, and its sense of purpose were all foundering.

A decade earlier, in the 1970s, health was added to its long and extremely diverse list of priorities including, but not limited to, agriculture, famine, democracy promotion, family planning, and education. By the mid-1980s, USAID's leadership began attempting to upgrade the agency's health effort. Dr. Kenneth Bart, a prominent CDC official, was brought on to head the agency's Health Office. Funds were scant though, and were disbursed based primarily on geopolitical considerations. What little remained was meted out to the multitudinous array of offices and divisions at the agency. The funds available to Bart and his Office of Health were mostly earmarked for child-related programs. The agency's polio immunization effort and its support of the development for a malaria vaccine were among their most prominent efforts for a long time. Child-centric health issues, which circumvented issues of sex or dubious behavior, were viewed by most at the agency as a safe sell, a particularly important consideration in the conservative Reagan years.

As a consequence of all these factors, in tackling the world's major health problems and crises, Bart and his Office of Health were able to pack only a very meek punch. And though HIV/AIDS had been an emerging global crisis for several years, "we weren't rehearsed on infectious disease," let alone HIV/AIDS, Paul DeLay said of USAID's health effort.

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