Dean's World

"How many would you say?"

"Not very many. A few. A few per month, maybe."

I traveled through central Africa with two other people, Dr. Harvey Bialy, molecular biologist and scientific editor of the journal Bio/Technology, who worked as a tropical disease expert in Africa for many years, and Joan Shenton, a British documentary filmmaker researching a documentary on AIDS in Africa for Dispatches (Channel Four U.K.), a program that has consistently challenged orthodox views on AIDS. We went because we wanted to see it all with our own eyes; to see how the real picture matched up with the picture we'd been given.

That people die of degenerative diseases at an alarming rate in central Africa is not in question. The question is how many of those deaths are really AIDS. We saw many sick, dying, and even dead people during this trip, but the task of trying to decipher just what they were truly dying of struck me as impossible. Often, their doctors ­ didn't even know. In many cases, it seemed not to matter. Death is death, and in Africa, death is common. But AIDS carries with it the same multiple curses of discrimination, terror, guilt, and despondency in Africa as it does here. And yet in Africa, AIDS diagnoses are given liberally, hastily, with little or no testing to back them up.

Although it was claimed that AIDS originated in Africa, it was not observed at all there until 1983 - two years after it had erupted in the United States. By the mid ­'80s, the "epidemic" was declared. Suddenly, the media was pouring out reports of a continent on the brink of virtual extinction. If the epidemiological projections about AIDS in the U.S. and Europe in the mid­ '80s were alarming, the ones for Africa were positively hysterical. There was no question AIDS was bulldozing Africa, taking out entire villages:­ men, women, and children, changing the demographics of central Africa forever.

According to official sources such as the World Health Organization (WHO), 7 million central Africans are infected with HIV. In Africa, we were ominously warned, AIDS is spread heterosexuality, and is divided equally between men and women. There was no reason to assume that the U.S. would not follow suit. If AIDS could explode among heterosexuals in Africa, why wouldn't it do so here? To assume that it wouldn't follow the identical pattern of spread in this country as in Africa was, "deep racial bigotry," according to A.M. Rosenthal, editorializing in the New York Times. But, in fact, the figures show that AIDS is a far greater problem in the U.S. than in Africa. It's true that of all the HIV ­positive people in the world, 69 percent are in Africa and only 16 percent are in the U.S. However, in terms of actual reported AIDS cases, 44 percent come from the U.S., whereas only 30 percent come from Africa. Finally, the total number of AIDS cases in the U.S. is 230,179. The same figure for Africa is only 151,455. In 1986, it was stated in the medical journal the Lancet that 60 percent of all children in Uganda were infected with HIV. The real figure is now recognized as 5 to 7 percent.

Far from being wiped off the map, all the African countries said to be hardest hit by AIDS are reporting population growth.

Despite all the hype, all the conferences, all the global AIDS programs, there is very little in the way of hard data or reliable figures coming out of Africa. The apocalyptic scenarios have been extrapolated largely from anecdotal and incomplete evidence. Furthermore, the very definition of African AIDS is a swell of symptoms that have all been quite common in Africa for decades if not centuries.

Our picture of AIDS in Africa was in large part fueled by the idea that AIDS, or HIV at least, originated there. This theory was based on a few reports that a virus similar to HIV had been found in African blood samples dating as far back as the 1950s. A virus said to be "closely related to" HIV was isolated in the African Green Monkey and before long, the theory evolved than HIV had somehow crossed species, jumping from monkeys to humans through some unidentified mode of transmission. This idea was bandied about in leading scientific journals during the mid­ to late '80s by AIDS researchers, who also claimed that AIDS was spread more efficiently in Africa due to extreme sexual promiscuity, blood­drinking rituals, and children playing with dead monkeys.

It is difficult to prove where HIV "came from," but it seems no more likely that it came from Africa than anywhere else. As for the stored blood samples, HIV was found in a Western blood sample dating back to the 1950s. Several leading scholars and researchers have disputed the claims that AIDS originated in Africa and is "decimating" the population.

During our almost three weeks in Africa we visited Cote d'Ivoire (Ivory Coast), Uganda, and Kenya, three of the nations said to be the hardest hit by AIDS. As if we were hunting some elusive beast, we tried to follow the footprints, but sometimes they vanished. We got glimpses of insight, pieces of truth that didn't always fit together. In Uganda, a first­rate dictatorship, we had to tread lightly, and seek permission and clearance from various government ministries at every turn. We had to pretend we weren't really asking the questions we were asking: Is there really an AIDS epidemic here, What exactly is "AIDS" in Africa? Is it new? Is it the same thing as AIDS in the U.S. and Europe? If it is the same disease caused by the same virus, then why does it manifest itself so differently?

Eventually a picture started to come into focus: In the absence of any reliable diagnostic testing, and with a very broad and unspecific definition for AIDS, "slim disease," as AIDS is commonly known in Africa, has become a kind of mop­up term for every disease involving diarrhea, vomiting, fever, or a cough, which are unfortunately also the primary symptoms of several tropical diseases. None of these symptoms are new to the continent of Africa, but what is said to be new is the epidemic proportions that these old symptoms and diseases have taken over the past ten years or so.

AIDS is diagnosed in Africa very injudiciously, and many, many cases are diagnosed as AIDS despite HIV not being present. Rarely are patients even tested for HIV, and even more rarely for depletion of CD4 (immune system) cells. While WHO insists that AIDS in Africa is being grossly underreported, some doctors ­ and researchers, both African and Western, submit the opposite ­ that the AIDS figures arc being inflated sometimes beyond recognition, and that the WHO definition for African AIDS is so nebulous and broad that it is virtually meaningless.

It appears that infectious, often deadly diseases are indeed rising to epidemic levels in Africa, but the lines between the old diseases and the "new" disease, slim, are perhaps hopelessly and indefinitely blurred. Many believe that the statistics have been inflated because AIDS generates far more money in the third world from Western organizations than any other infectious disease. This was clear to us when we were there: Where there was "AIDS" there was money:­ a brand new clinic, a new Mercedes parked outside, modern testing facilities, high­paying jobs, international conferences. A leading African physician practicing in London, who refused to be named, warned us not to get our hopes up about this trip. "You have no idea what you have taken on, he said on the eve of our departure. "You will never get these doctors to tell you the truth. When they get sent to these AIDS conferences around the world, the per diem they receive is equal to what they earn in a whole year at home."

"AIDS is a perception," said Dr. Kassi Manlan, director general of Health and Social Services in Cote d'lvoire. "The more you look for it, the more you see it."

Rakai District, Uganda

We were the only car on the road. Joan and I, seated in the back, stared out the car windows, silenced by the sight. It was as if the whole place had been shredded:­ a chaos of dust and debris, rotting wood shacks, garbage, people in rags, children in rags. The poverty in Uganda was crushing, total, and unrelenting. As we drove deeper and deeper into the Rakai District, the "AIDS epicenter of the world," all this talk of HIV and T­-cells and safer sex started to seem a little absurd. We got out of the car and surveyed what looked like a swamp, with a pipe emerging from it. This was, it turned out, the surrounding villages' water supply. It was also where the sewage was deposited. People looked listless, malnourished. Many of the children had swollen bellies, thc telltale sign of malnutrition.

"Don't ask them what they eat," advised one doctor we spoke to, "ask them how often they eat."

The nearest hospital was miles away. There were no cars; the only means of transportation were donkeys and the occasional bicycle. The Ugandan government sets and enforces fees for medication, which most people can't afford. It became clear to us that most people living in the Rakai district had no access to health care whatsoever. Malnutrition, filthy water, diseases left untreated - and the WHO had come in with "AIDS educational programs," instructing people how to use condoms?

We went back to the main road and stopped the car. I walked straight into the first village I saw. At the entrance of the village, a group of people, mostly men, gathered around to greet me. I had asked a Ugandan radio journalist, Samuel Mulondo, to come with me to interpret, although some of the villagers spoke English quite well. I introduced myself and started asking about AIDS.

"Terriible," said one of them. "I have had two brothers and one sister die of AIDS already."

"I'm sorry." I said. "What did they die of?"

"Slim. AIDS."

"I mean what was the cause of death?"

"Ahh, Well, my brother, for instance, he had malaria and we couldn't afford to get him treatment, so he died."

"So he died of untreated malaria," I offered.

"Yes, malaria."

"Why did you say he died of AIDS?"

I asked. He shrugged. "Slim is a formula for everything," he said. "When somebody dies, we call it slim."

In Africa, AIDS is called slim disease because it is characterized first and formost by extreme wasting, a condition primarely caused by prolonged diarrhea.

The clinical definition of AIDS in Africa was established at a WHO meeting in the city of Bangui in 1987, and came to be known as the "Bangui definition" of AIDS. The three main characteristics are diarrhea, fever, and chronic coughing, although vomiting and abdominal pain are also common symptoms. CD4 cell counts are not part of the definition, as testing is too expensive and therefore entirely unrealistic. Pulmonary tuberculosis (TB of the lung, the most common form of the disease), in the presence of HIV, is called AIDS. In fact, TB is listed as the leading cause of AIDS deaths in Cote d'Ivoire, according for a reported 40 percent.

Visiting scientist Charles E. Gilks, who works at the Kenya Medical Research Institute in Nairobi, cautioned in a paper in the Britisch Medical Journal in 1991 that the clinical case definition for AIDS in Africa is virtually useless, as it fails to distinguish between infections resulting from HIV, and those such as TB, malaria, and parasitic infections that are endemic in these parts of Africa, and that, independent of HIV, themselves lead to severe immune suppression. The results, Gilks warned, is that "substantial numbers of people who are reported as having AIDS may in fact not have AIDS."

One of the diseases that is the most difficult to distinguish from African AIDS is pulmonary tuberculosis, which shares virtually all its symptoms even if HIV is not present.

"The symptoms are the same by and large," said Dr. Okot Nwang, a TB specialist working at Old Mulago Hospital in Kampala, Uganda. "Prolonged fever? The same. Loss of weight, the same. Blood count? A little confusing, CD4 count, both low. So what's the difference? Maybe diarrhea."

From 1985 to 1989, the number of TB patients at Mulago Hospital practically doubled. Most of these were cases of pulmonary TB. It is estimated that there are 4 to 5 million cases of highly infectious TB per year worldwide. Annually, 3 million people die of the disease. According to a study by Nwang, pulmonary TB is most common in the age group of 15- to 44- year-olds, who comprise 70 to 80 percent of all cases. In light of this, it seems odd that so many doctors make the point that AIDS in Africa is "new" because it is a disease that is killing young people. TB is also killing young people. The ratio of male to female cases with TB is also similar to that of slim, two males to one female. How much of what is called AlDS in Africa is really TB?

Cote d'lvoire is a rather prosperous country on the west coast of Africa. Since 1984, there have been 10,600 declared cases of AIDS there. The capital, Abidjan, a popular tourist resort, is also known as a prostitution and hard drug center of West Africa. It has been estimated that 50 percent of Abidjan's prostitutes are HIV-positive, and 1.3 million, or 10 percent, of the general population are positive. Currently in Cote d'Ivoire, AIDS is said to be the leading cause of death among men and the second leading cause among women, the first being maternal mortality.

But the definition of AIDS is problematic and confusing even to African doctors who work closely with it.

"There is something new, definitely," said Dr. Benoit Soro, an African doctor who carried out research with Dr. Kevin DeCock from the U.S. Centers for Disease Control and Prevention (CDCP), urging reappraisal of the African AIDS case definition. "Today young people are dying. That was not really the case before, not on this scale. People from all walks of life are dying now- lawyers, doctors. It is not only the poor people in the villages. I think it is dangerous to compare AIDS with the old diseases because AIDS is something new."

Dr. Aka Kakou, the infectious disease specialist working at Treichville Hospital, Abidian, agreed, "None of those diseases are new, it's true, but they are being expressed in a new way, he said. "Diseases that used to be treatable, such as TB, malaria, meningitis, are killing people now. For example, the death rate of meningitis has gone up rather dramatically. We now lose 60 percent of meningitis patients whereas we used to lose only 45 percent. And cerebral malaria is another disease that used to be very rare and is now becoming common. I think that HIV is the underlying cause, of all this. It is exacerbating all these old problems, and rendering them untreatable."

The problem with that theory however, is that HIV is not a constant factor. A study published in the British Medical Journal in 1991, titled "AIDS Surveillance in Africa: A Reappraisal of Case Definitions," studied 1,715 patients admitted to three of Abidjan's main hospitals over a period of three years. All were tested for HIV. Of those, 684 were positive and 1,031 wore negative. Of the ones that were positive, 35 percent fulfilled the WHO definition for AIDS. Of the HIV ­negatives, 10 percent met the definition. The point is, many people have what appears to be slim who do not have HIV and slim is characterized by general failure to respond to medication or to recover from common sicknesses. Hence there must be exacerbating factors other than HIV.

"This is hairsplitting," said one doctor working at a major hospital in Kampala, Uganda. "There is something new. I don't care if it's HIV or something else but it's something that wasn't there before. I treat people for what symptoms they have when they come to me. That's all that matters."

Most health officials and doctors we interviewed seemed certain that AIDS in Africa is a reality and that it is "something new," but others were less certain. Dr. George Oguna an infectious disease specialist working in Nairobi, Kenya, when we asked if there is a difference between TB and AIDS, shook his head. "It's all the same," he said. "I've not seen an epidemic of AIDS."

While the public seems resentful of the constant repetition that AIDS is wiping out Africa, the officials generally nod in somber agreement when the most dire statistics are cited. And to what end? AIDS generates far more money than any other disease in Africa. In Uganda, for example, WHO allotted $6 million for a single year, 1992­-93, whereas all other infectious diseases combined-barring TB and AIDS-received a mere $57,000. One of those diseases, malaria, is still the leading killer of people worldwide, and several drug-­resistant strains of malaria have been emerging in recent years.

I climb the dark stairwell of Radio Uganda, a huge complex in central Kampala, and, finally, I find Mulondo's office. Mulondo is one of Uganda's best­-known journalists, and his specialty is AIDS. He is a closet dissident: He has doubts about HIV being the real cause of AIDS, and he is exasperated by the hype surrounding AIDS in Africa. But his broadcasts are strictly regulated and he has to he very careful not to upset the Ugandan authorities.

A few shards of glass cling to the window frame next to his desk. All the windows of the building are similarly shattered, or filled with bullet holes from the civil war.

I have to slip things in very subtly," he said. "My listeners know how to read between the lines of what I am saying."

Mulondo pointed out that Uganda has been subject to two decades of turmoil, war, decay, and the unparalleled dictatorship and wreckage of General Idi Amin, who was ousted from power in the late 1970s. Uganda had a rather impressive health­care system through the '60s, but it collapsed in the '70s and '80s. Many qualified doctors fled the country leaving it in a state of total disarray. with a terrible shortage of medical supplies.

"People are dying here because they can't afford any basic health ­care," he said. The poverty is very bad, people are malnourished. I wouldn't connect these deaths to sex, not here. I know a lot of people who are promiscuous and they are not sick.

"Every infection is now called slim," he continued angrily, "and it's totally neglected in the rural setting. The stigmatization leads to people not getting medical attention if they are said to have AIDS. Even in the hospitals. It is considered so hopeless that they don't bother to treat them."

Mulondo also does not agree with the statement that middle­ and upper-class Africans are succumbing at the same rate as poor people in the villages.

Mulondo said he had been trying for months to obtain the real figures of AIDS in Uganda but that he couldn't get clearance from the AIDS Information Center, the central bureaucracy that controls the dissemination of statistical information. He requested statistics on the number of HIV infections, number of AIDS cases, number of deaths, and comparative death statistics (meaning how many people died in these regions before AIDS emerged, versus how many are dying today). He received no statistics. "They say they can't give you anything unless it's cleared from the top, at government level," he said. "And they know I'm skeptical of it all so l can't get it. They only tell you what they want you to know."

I also tried very hard to obtain these statistics. Finally, I was told they do not exist. Even in the relatively prosperous Cote d'lvoire, no actual death statistics are kept.

One hesitates to burst a bubble that may he helping people, however inadvertently, but in this case, as in most situations like this, the money is being trapped at an administrative level, and hardly trickling down to the people who need it. It may well be that,­ just as it is argued in the West­, figures had to be inflated or else nobody would care, but in Africa the consequence of this terror is far from innocuous. It has caused a deep psychological wound that one relief worker, Philippe Krynen, calls "AIDS brain," in which people are so convinced they will die they actually get sick, so strong is the belief that a deadly virus has spread like wildfire, and that there is no escaping it.

When Krynen, a French nurse working with AIDS orphans in Kagera, a region of Tanzania near the Uganda border, first came to the area, he realized that the first thing he had to do was get a real answer to the question of how many people were "infected" with HIV, "When I came here," he said, "people had completely given up. Nobody was interested in safe sex--that's only an option if you think you have a chance. So we decided to test everybody to find out who was not infected. I figured that those who were not infected could become leaders and inspire the others. We tested 150 Tanzanians. We were expecting to find up to 50 percent HIV­ positive. We found 5 percent."

But Krynen reasoned that the sample was not representative of the general population, that the age groups and levels of education were different. So he did another round of testing, this time of 842 people ­ the entire adult population of a village. Of those, 116 were positive, or 13.5 percent. "We had people who were symptomatically AIDS patients:" Krynen said. "They were dying of AIDS, but when they were tested and found out they were negative they suddenly rebounded and are now perfectly healthy." Krynen even came across an HIV ­positive six ­year ­old, whose parents are both negative and who has never been to a hospital or received a transfusion. The only time she ever had an injection was as part of Unicef's basic vaccine program.

"Everybody talks about development in Africa, but there is no such thing," Krynen said. "There is only survival. And now survival is made more difficult because there is no hope for tomorrow. In the villages where I work, people are totally overwhelmed by the media campaign, which always repeats the same thing: that you're dead. That everybody is infected. This is what they call awareness. We are paying a very high price for this gross exaggeration. The whole community is washed up, despondent, because of this psychological pressure."

Krynen also did a rough count of how many orphans were in Kagera due to AIDS. In Africa, a child is considered an orphan if either or both parents die. Krynen surveyed 160 villages and arrived at a very rough estimate. "Nobody keeps track of the death toll here," he said. "Maybe in some hospitals they do, but they'll only keep the figures for two or three months and then they'll scrap them because they need the paper." He estimated that there would be some 17,500 AIDS orphans in Kagera. "These figures were virtually meaningless," he said. "I made them up myself, but they wound up getting sent off to Kalizizo, and from there to Dar es Salaam, and then to the National AIDS Control Program. Then, to my amazement, they were published as official figures in the WHO 1990 book on African AIDS. After that, every six months the figure just kept jumping up. By now, the figure has more than doubled, based on I don't know what evidence, since these people have never been here. Today they say that there are 50,000 AIDS orphans in Kagera."

Mulondo agrees: "This safe sex business is not working. The rate of promiscuity is increasing because people don't give a damn. They've been told that 80 percent are infected, that they're going to die, there's no way out, so people are trying to enjoy themselves. Many people have said to me, 'What's the point? We're all gone anyway. We're dead.' This is the result of these exaggerated AIDS scare campaigns."

"If people die of malaria, it is called AIDS," Krynen said. "If they die of herpes, it is called AIDS. I've even seen people die in accidents and it's been attributed to AIDS. The AIDS figures out of Africa are pure lies, pure estimate."

Rakai District, Uganda

Gerald wanted me to meet his family. He grabbed my arm and brought me over to their hut. It was dark and musty inside. A young woman carrying a small child emerged. "This is my wife and my daughter," he said. He told us he was an electrician and his monthly salary was about 1,500 Ugandan shillings, or two American dollars. I asked him, and all the others standing around, whether they had seen a new epidemic. Were they clear about what AIDS was? Were they getting any help? Any medical attention? One man laughed. "They come here in those vans every week. They give us condoms for AlDS." Gerald clutched my arm. "Madam," he said, "we are dying because we have no medication.",

He walked me over to a nearby hut where his sister, a young woman in her 20s, lay in the dark, alone. She barely stirred when Gerald pulled the cloth off her to reveal an emaciated body and legs covered with sores. I started to ask what she had, but then l realized how futile the question was. Who the hell knows? Certainly no doctor had ever set foot in here. Whatever she "had," it hardly mattered, because there was no money to get her any treatment or medicine at all.

Joan and I pulled out what cash we had and gave it to Gerald, asking that he use it to buy medicine for the girl. We then left the village and drove up a hill, where there was supposedly a clinic. Sam and our driver waited outside as Joan and I pushed open the door and walked in.

The place looked thoroughly abandoned ­ dark, dirty, a few cots, a few cholera posters, a scale. Surely, we asked, this place isn't in service. We were assured that it was. Suddenly, a woman appeared. "Can I help you?" she asked. She told us she was in charge of the clinic. When we asked her if there were any medical supplies she unlocked a padlocked cabinet which contained a few shelves of various antibiotics.

When Joan returned to Uganda a month later to make her film, she went back to the village and to the clinic on the hill. That was when she learned that the reason the medicine cabinet had been locked was that the government had started to charge money for the medication. She said Gerald had bought medicine for his sister, and that the sores on her legs had almost cleared up and she was walking again.

I'll post part 2 tomorrow.--Dean