The New York Times - November 8, 1985
Lawrence K. Altman

These scientists are involved in two related battles: controlling the incurable disease and fighting suppression of information crucial to the international search for its origin, cause and cure.

Perhaps of greatest long-term importance in Africa, where birth rates are booming, is that a continued unchecked spread of AIDS among sexually active women has caused many babies to be born with the disease and could lead to many more such births. The AIDS virus can pass from mother to fetus in pregnancy and through breast milk to an infant after birth.

A Major Medical Mystery

Why the pattern of communicability seems to differ so drastically in Africa from that elsewhere is one of the major mysteries of one of the most confounding medical stories of this century.

Medical scientists believe that far more research, testing and reporting on the disease in Africa need to be done before those patterns can be fully understood and before any conclusions can be drawn from them for people in other parts of the world.

Africa has been the focus of attention for some time, in part because some scientists have suggested that the disease may have originated there. However, others point out that it was first recognized, not in Africa, but in the United States, and that no scientific evidence has proved any theories about where it originated.

Lessons Vital for World

But what is clear is that the disorder has become a major public health concern in central Africa, that it is emerging as one in East Africa and that scientists now generally believe the African experience, however it is ultimately diagnosed, will almost certainly contain lessons vital to the health of people throughout the world.

The epidemiology of AIDS in Africa, where homosexuality does not seem to be common, contrasts radically with findings elsewhere. Except for Haiti, AIDS has occurred in other areas of the world mostly among homosexual men, although some experts are concerned that it may become an increasing risk among heterosexuals there as well.

In the United States, more than 70 percent of the more than 14,000 AIDS victims have been homosexual or bisexual men. The Federal authorities attribute only 1 percent of the nation's AIDS cases to intimate heterosexual contact, and nearly all these cases involve women who were apparently infected with the AIDS virus through sexual contect with an infected man.

Jump in Reported Cases

Acquired immune deficiency syndrome, or AIDS, which was discovered in 1981, has been known to be a worldwide public health problem since 1983, and there has been increasing recognition of the dimensions of the problem in recent months. The number of countries reporting AIDS to the World Health Organization in Geneva jumped to 71 in October from 40 in August, with the case count nearing 17,000.

Although individual doctors have reported in various medical journals on AIDS cases among residents of almost 20 countries in Africa, no country in central, East or West Africa has reported any cases to the World Health Organization. So it is not possible to obtain an accurate total count of cases on the continent. South Africa does report to the international agency.

To this reporter, who is also a physician and who has examined AIDS patients and interviewed dozens of doctors while traveling through Africa, the disease is clearly a more important public health problem than many African governments acknowledge. In trying to explain the dimensions of the problem, and his frustrations in dealing with it, one physician picked up two thick packs of green hospital record charts, one for AIDS cases, the other for suspected cases, and said quietly: "They are growing thicker each week." Yet, he said, the director of the hospital has told him to tell officials that he has diagnosed only two cases of the disease.

Access to accurate information has been shut off in many cases. Some expatriates working in central and East Africa have said they feel threatened with expulsion from their host countries if they talk freely without government approval. Some African countries have refused visas to journalists inquiring about AIDS.

And in at least one government, according to Western diplomatic sources, a rift has developed between ministries that want to suppress information about AIDS and health officials who, in the absence of effective treatments and vaccines, are eager to provide more public education to stall the epidemic.

In some important ways, Rwanda is a notable exception to the suppression of information. Its doctors have been permitted to publish in journals and grant a limited number of interviews. According to new data provided by one expert, the number of cases in Rwanda, although an incomplete total, has surged each year since 1982 in a pattern similar to that in the United States and elsewhere. Most cases have occurred in Kigali, the capital, with a preponderance among those in the middle and upper class who earn the equivalent of $3,000 to $6,000 each year. About 40 percent of the cases have been among women.

The total number of AIDS cases has risen sharply since 1982, when a single case was reported. There were six reported cases in 1983, 86 in 1984 and 224 so far this year.

Children accounted for 70 of these 317 cases, or 22 percent, a proportion that contrasts sharply with that of the United States. The Centers for Disease Control in Atlanta report that children accounted for only 206 the 14,519 AIDS cases in the United States, or 1.4 percent of the total. Babies With AIDS Prompt Great Concern The childhood afflictions in Rwanda and elsewhere in Africa are of particular concern to medical researchers. "Since nearly half the cases of AIDS in Africa occur among women in their reproductive years, and since these women are having many babies, perinatal transmission is a very important problem, said Dr. Peter Piot, a professor of microbiology at the Institute of Tropical Medicine in Antwerp, Belgium, who is helping coordinate African research projects on AIDS.

Thus, there is the potential of a possible health menace of staggering proportions for future generations of Africans.

Nevertheless, the Secretary General of the Rwandan Ministry of Health, Dr. Francois-Xavier Hakizimana, says the disease, although a threat, is not at present the No. 1 one public health concern. "We prefer to talk about malaria, diarrhea and parasitic diseases and malnutrition, which are our major public health problems," he said in an interview.

He said his government had addded AIDS to its educational programs against sexually transmitted diseases, although it did not plan a specific campaign against AIDS.

The importance of public education is underscored by the supposition among physicians in Africa that just one conventional sexual encounter may be sufficient to transmit AIDS, if one is to believe the sexual histories that patients have given their doctors. However, the risk of AIDS appears to increase with the number of different sexual partners.

Scientists believe that although the communicable nature of AIDS in Africa is markedly different from what it is in the rest of the world, the disease itself is the same. They come to that conclusion primarily because the virus HTLVIII/LAV seems to be equally incriminated as the cause of the disease the world over, although they can detect seemingly minor variations from within various countries and from continent to continent. Disease Is Spread Through Sexual Contact Sexual contact and blood are two of the most common ways AIDS is spread the world over.

Doctors here regard heterosexual transmission as by far the most important factor in the spread of AIDS in Africa, and they base these conclusions on studies of victims and interviews with them and their families.

The possibility exists that unadmitted homosexuality may be a factor, but researchers, although they admit that the studies and scientific research must go further, generally discount homosexuality as significant to the spread of the disease. Knowledge about blood transmission is more limited still.

One difficulty in blood analysis is that most of these countries do not have the expertise and advanced laboratory equipment needed to test for evidence of the AIDS virus in blood. Specimens must be sent to Belgium, France and the United States for virus testing, which, although a slow process, eventually does help in overall research findings. But the consequence of the lack of proper testing is that AIDS-contaminated blood may often be transfused every day into patients who for various reasons are in need of donated blood. According to one study of about 100 donors in Rwanda, 20 percent had antibodies to the virus and presumably could pass on the virus.

Because of the costs of disposable needles and a somewhat less than strict attitude toward the problem, doctors and health workers in Africa often re-use needles without sterilizing them.

Doctors studying the transmission of AIDS acknowledged on close questioning that no study had yet been done to determine the frequency by which the disease is spread by contaminated needles. Physicians in Rwanda, responding to a suggestion, said they would now collect needles used in everyday medical practice and send them to Europe and the United States for tests to detect the frequency with which they are contaminated with the virus.

However, they cited one important factor weighing against the predominance of needle-transmitted AIDS. It is the relative absence of cases among children 4 to 12 years old, a period when some are exposed to several needle injections for immunizations and common infections. For the most part, the children found to have AIDS are under 4.

Doctors in this country, who spoke on the condition that they would not be identified, said that AIDS was now a predominantly urban phenomenon, mainly striking upper-income groups. But the disease affects all social classes and threatens to spread to the families that toil the steep, lush hillsides of Rwanda.

Although many people living on the hillsides have never traveled more than a few miles beyond their local markets, Rwanda has an unusually fine road network for Africa, making it possible for someone to travel from Kigali to almost any area of the country within about three hours. Traffic jams are short by Western standards. Almost any message directed at a person over the state-controlled radio station, particularly one sent by a doctor, will get a rapid response. Nowadays, Rwandans joke that when they hear the names of a few particular doctors summoning patients, they presume these people must have AIDS. Prostitutes Suspected As a Prime Source Kigali has little entertainment and few discotheques, unlike Bujumbura, the capital of neighboring Burundi, which is noted for its livelier nightlife. Rwanda is a heavily Roman Catholic country where in 1983, before doctors recognized the epidemic of AIDS, the government rounded up prostitutes and Rwandan women who consorted with expatriates. The small number of prostitutes who are inconspicuously present on the streets, are believed to be a prime source of spreading AIDS.

A study of 33 women who are prostitutes in Butare, Rwanda, where the national university and an important military camp are situated, found that 29, or 88 percent, had been infected by the AIDS virus. The researchers also found that 25 men who were customers had a median number of 31 different sex partners each year with a range from 2 to 119, including a median of 30 prostitutes. Evidence of infection with the AIDS virus was found in 7 of the 25 men. The researchers found little evidence of anal intercourse and concluded that frequency of sexual contacts with different partners was more important than the type of intercourse.

In another study, prepared earlier and being published in the United States in The Journal of the American Medical Association, several Belgian physicians working in Rwanda and Belgium together with American scientists from the National Cancer Institute in Bethesda, Md., also reported finding high incidence evidence of AIDS infection among prostitutes; they said they found the virus in 80 percent of a group of 84 prostitutes surveyed in Rwanda. The scientists concluded that "female prostitutes are highly susceptible to infections" with the AIDS virus and "could be an important reservoir of the AIDS agent among the heterosexual population of central Africa."

In a study of 90 prostitutes in Kenya by a team of Kenyan, American and Canadian doctors 49, or 54 percent, were infected by the AIDS virus and more than three-fourths of these women had evidence of significant illness such as swollen lymph nodes throughout their bodies. The figure for the prostitutes compared with 3, or 9 percent, of 35 sexually active men who attended a medical clinic and two, or 5 percent, of 42 medical personnel who served as a comparison group for study purposes. Number of AIDS Cases May Be Much Higher The figures cited for AIDS cases in Rwanda, as in other African countries, must be regarded as minimal because not all AIDS victims seek medical treatment; physicians do not recognize all cases of AIDS as such; intensive care units either do not exist or rarely meet American standards; few autopsies are performed in most African countries; most doctors in Africa have less chance to compare notes with their colleagues practicing elsewhere, even in the same country; and it is difficult to keep up with medical advances because American and European scientific journals do not circulate widely in Africa.

AIDS apparently can go by different names in different regions. What Ugandans call Slim disease, because of the severe wasting that results, appears to be AIDS.

Whatever the name, officials of African governments fear that irrational fear will jeopardize tourism and deprive their economies of a leading source of foreign exchange.

In Kenya in East Africa, government officials say there are only a few cases of AIDS. But doctors say privately that there are many more, though the numbers do not approach the levels in Rwanda, Zaire and other central African countries.

Some other studies have found about 10 percent of healthy adults in parts of central Africa, including areas of Rwanda, Zaire, Zambia and Uganda, to have AIDS virus antibodies in their blood, a sign of probable ongoing infection with the virus. These studies, cited the Journal of the American Medical Association, also have found that "heterosexual contact is probably the predominant mode of transmission of the AIDS agent" in Africa, and that AIDS patients here are far more likely than others to have a history of multiple heterosexual partners and visits to prostitutes.

Rwanda studies are done for the most part by small teams of Belgian and Rwandan doctors who work on AIDS on their off-hours because their primary responsibilities are to care for patients sick with the vast array of tropical diseases. They have found, among other things, a high incidence of subtle inflammatory reactions near the blood vessels called perivascular sheathing in the peripheral part of the retina in the back of the eye of people infected with the AIDS virus.

Because the eye is an extension of the brain, an eye examination, in a sense, can provide an important window into the central nervous system: The doctors here are trying to learn whether, in the absence of advanced laboratory tests, intense examinations with the standard hand-held, lighted ophthalmoscope, could be a simple, accurate tool with which to diagnose AIDS in children.

Many doctors believe that yet-to-be-detected co-factors that act in conjunction with the AIDS virus are what determine whether an infected person remains without symptoms or becomes ill and dies from the disease. Rwanda researchers are studying two such possible co-factors, one being whether male circumcision protects infants against AIDS and the other whether alcoholism enhances its development.

The doctors also said they were eager to participate in experiments to evaluate experimental therapies.

The opportunistic infections that strike AIDS patients vary somewhat according to geographic regions and one that occurs perhaps more often in Africa is shingles, or herpes zoster. The practiced eye of this observer recognized the sores and scars of shingles on the faces of several patients in hospitals, even on the streets. Some victims were blinded in one eye because shingles scarred the cornea.

The cryptococcus fungus that causes a type of meningitis is now a common opportunistic infection and its identification through examination under the microscope of a specimen of spinal fluid gives doctors in Africa a simple and inexpensive way to detect some cases of AIDS.

One doctor, recalling his shouts of surprise when he saw this fungus in a specimen from a patient for the first time two years ago, now says it has become an unfortunate routine; he has seen the organism in three cases in the last three weeks. Anger Is a Factor In Suppression of Data Part of the suppression of information about AIDS cases reflects the anger of many Africans who are incensed about a theory that the disease started on their continent. They perceive themselves as being blamed for starting a disease that is an act of nature and that they believe concerns the United States and other industrialized countries more than Africa.

Several Africans have expressed vehement criticism about a widely circulated statement by Dr. William A. Haseltine of Harvard University and the Dana Farber Cancer Institute in Boston, and a leading researcher in AIDS. Dr. Haseltines was quoted in a recent Newsweek interview as saying that African health, with the crumbling of colonial health structures, the massive relocation of people and the ecological disturbance, was seriously deteriorating, and the world would suffer the consequences.

Some doctors familiar with medicine in Africa contend that health care in Africa, though not generally up to the standards of industrialized nations, has improved significantly in the decades since independence.

Dr. Haseltine recently testified before the United States Congress that more than 10 million people living in central Africa, or one-tenth the population there, are infected with the AIDS virus and that as best as can be determined the epidemic of AIDS now affecting the world started in Africa. "AIDS is but one of a series of diseases that we can expect to spring from this continent in the future," Dr. Haseltine said. He based his assertions on extrapolations from surveys published in the medical literature.

The official Ghanaian Times, published in Accra, charged that such blame was unscientific. An editorial published in the paper said it was necessary to caution the African mass media against being unsuspectingly used in "this shameful, vulgar and foolish attempt by white supremacists to push this latest white man's burden to the doors of the blackman."

The Kenyan press, which has generally accepted the government version, is now asking pointed questions. Referring to the theory that AIDS began in Africa and charges that the disease is more widespread than people are told, Mike Njeru of The Kenya Times asked: "Where are the African doctors to clear the air for us and why should the task of exonerating us be left to the politicians and others who may not be qualified enough to give a professional rejoinder?"

In the wake of the furor, experts who have been reporting their findings about AIDS in Africa in medical journals have expressed deep concern about the prospects of not being allowed to continue that standard practice. Already, scientists have criticized the validity of some data that have been reported in the world's leading medical journals and have raised serious questions about the absence of other data. A Crucial Need To Avert Censorship Rapid dissemination of pertinent scientific data is crucial to protecting public health throughout the world and any interference in the traditional practice would amount to a form of political censorship rarely seen in medicine.

For example, Burundi and Zaire have decided against presenting data at a meeting on AIDS in Africa sponsored in part by the World Health Organization that more than 500 scientists are expected to attend on Nov. 22-23 in Brussels, according to Dr. Nathan Clumeck of St. Pierre Hospital and the University of Brussels, one of the organizers. Though there is some dispute about the wisdom of holding a meeting on AIDS in Africa in Belgium, researchers working in Zaire, acting on government orders, have reversed their decision to present some of their findings.

AIDS came to be recognized as a new phenomenon in Africa indirectly when doctors in Belgium and France diagnosed many cases among wealthy black Africans who had flown to Europe for treatment of what turned out to be opportunistic infections resulting secondarily from the paralysis of the immune system caused by the AIDS virus.

Spurred by these findings, a team of Belgian and American doctors went to Zaire in late 1983, found 38 cases in a three week period, and estimated the annual incidence of AIDS cases in Kinshasa to be 170 per million people. By all accounts the disease continues to spread unabated there. Despite the report, which was published in The Lancet, the Government has denied the existence of AIDS in Zaire.

Yet research on AIDS is being done in Zaire by American, Belgian, French and Zairian scientists. Doctors familiar with the results have said privately that only a small fraction of what has been learned there has been communicated formally to other scientists, apparently because of Government suppression.

Among the points being learned in Zaire, according to uncomfirmed reports reaching other countries, are these:

* AIDS has had a heavy impact on workers in some of the country's leading institutions. About one-half the staff of a bank in Kinshashasa has been stricken by AIDS. Political and community leaders, too, have been among the disease's victims.

* Some reports say about 10 new cases of AIDS are being seen each week at a hospital in Kinshasa and that up to one-half of the patients in that hospital are infected.

* Doctors are recognizing with increasing frequency that renewed attacks of malaria and fulminant tuberculosis, which are very common infections in Zaire, are additional examples of the so-called opportunistic infections that kill patients with AIDS. In the past most such deaths would have been attributed to malaria and tuberculosis, not AIDS. French doctors have also recognized an extraordinary incidence of various types of acute leukemia in a hospital in Zaire, according to Dr. Robert C. Gallo, a leading American researcher.

The importance of a finding a solution to the AIDS patterns of mystery is enormous.

AIDS erodes the strength of its victims, most of whom are in the prime of their productive lives. Beyond their personal tragedies, AIDS bleeds the economies of countries that are heavily dependent on labor.

Also, since AIDS tends to affect upper-income Africans most often, including many of the continent's most competent and highly trained people, the disease threatens to decimate the segment of the population that developing countries can least afford to lose.

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