An Aids Information System for Africa

Sylvia Ojoo**

John Radcliffe Hospital, Nussfield, Department of Clinical Medicine Headington, Oxford OX3 9DU, UK

**Respectively on leave from Kenya National Library Services, Institute of Computer Science (University of Nairobi), and Kenya Medical Research Institute.

ABSTRACT

In a two-part paper, we look at existing sources of AIDS information, and how that information is being used to control the spread of the disease. The first part discusses AIDS in a broader context, touching on issues as diverse as its social impact and its intricate nature. The paper builds on that background to put into perspective and justify the role of information technology (IT) in the fight against the disease in developing countries (DCs). The second part studies the AIDS situation (especially in Kenya) more closely, presenting the existing information system, and shows how an enriched, partially computer-supported system could change the equation. The paper discusses in greater detail the information system we are currently developing, and suggests ways of customizing it to requirements of other DCs. Both papers should be seen as regular scientific contributions, but also as a conduit for disseminating AIDS information.

1. INTRODUCTION

In this section, we argue that computer technology (and in particular, the system we are proposing) is "appropriate" to DCs. The section also gives the reasons why processing AIDS information requires such a system.

1.1 IS THIS TECHNOLOGY APPROPRIATE?

In the Nigerian case, a low-cost (estimated to be equivalent to the price of two new family cars), multiuser medical records system was developed for the Obafemi Awolowo University Teaching Hospitals Complex (OAUTHC). There are tens of other productive ways in which computers can be used. Take, for example, the nursing duties which entail the acquisition and exchange of information, planning, scheduling, and co- ordinating the work of both nurses and doctors let alone traditional secretarial duties (especially if one considers a DC, where strict job specialization is exotic). Think also of those hundreds or thousands of patients who dread going to public hospitals (in several DCs, many cannot afford private medication), for fear of staying in the queue (if it exists) for a whole day without ever being attended simply because of a bureaucratic (and long) registration and admission process, that a simple computer system could enhance manifold. That is not half the story; computers can do much more. They can be useful aids in other procedural duties, eg. diagnosing patients, identifying suitable treatment, forwarding patient records of a referred patient to the relevant hospital or consultant, etc. Above all, computers are well known for their number-crunching capability, and can be trusted to perform non-intelligent (or are they?) tasks like processing voluminous statistical data, managing large databanks and handling queries (eg. how many previous visits has the patient made to the hospital in the past 6 months), handling other administrative data (eg. award every clinical officer above grade 4 a 10% pay rise), or simply keeping record of a patient's medical history.

But perhaps the computer's enormous (if cheap) storage capacity is also its undoing, especially when used in AIDS management. On the one hand, there is so much AIDS information (its casualties, research results, myths, etc), all changing so fast that only a computer can be able to cope with its timely processing. As we show later, the disease is itself very complex relating subtly to several other ailments, and impinging on known and previously unknown ailments in various ways (eg. protecting oneself from the virus that causes AIDS, HIV, shields the person from contacting all known sexually transmitted disease ghonorrhea, herpes, thrush, cancer of the cervix, etc does that now make it primary health- care ? or from unwanted pregnancies; while it has also been observed that tuberculosis and pneumonia are prevalent among AIDS patients [Huba91] the other hand, AIDS and AIDS-related diseases are so sensitive and personalized issues that their computerized processing may make them suspect (especially) to the computer illiterate clients. As a consequence, an extra level of data security and privacy is demanded of AIDS information systems. "Readers" must be satisfied that no potentially incriminating information is held in the computer.

Because of a hitherto absence of an AIDS cure, most AIDS-related activities are research based. Research is a propeller to development. In addition to providing some of the services cited above, the system we propose (if fully implemented) will also greatly facilitate and co- ordinate research efforts. The complexity and scope of AIDS research and patient care requires a concerted and well collaborated effort between scientists and clinicians and indeed, everyone. Again, "research" is one thing alien to many DCs; what with such harsh research conditions poor communication, little motivation, lack of facilities, scarce (up-to- date) scientific information, name it. One may rightly question if this discussion is "appropriate" any more! A scientist working at a highly rated African medical research institute asked one of the authors what research was there in Africa to talk about! She cited a case of a former colleague who once asked "what more research remains to be done on malaria ?". But discussions in Part II of this paper (eg. on the search for "wonder" drugs) may convince the reader otherwise.

Apart from supporting research, it should be noted that most of the health care work in DCs is administered by nurses and paramedical officers, often with limited training largely due to a shortage of qualified personnel (if that partly explains the low level of research!). Trainers are not any more widely available. The system we are proposing will provide some form of what has come to be called "computer-aided learning" (or CAL), which can be used to "professionally update" such paramedics in a most convenient and inexpensive way. A similar system has been proposed for training nurses caring for sexually-transmitted disease (STD) patients in Zimbabwe, and is briefly discussed in Section 3. Both systems are custom-tailored to the requirements of DCs (eg. they assume that candidates are semi-computer- illiterate).

All said, it may be necessary to revisit the issue of appropriateness. It can be argued that the very vast majority of inhabitants of the third world live in rural areas, and further, that only a very small proportion of the urban folk have computers. A report discussed later in this paper shows that AIDS is a "town-problem". Casualties in the rural areas are marginal compared with urban figures. Moreover, it is believed that the rural folk tend to take seriously what their urban counterparts (who, in general, also happen to be the bread-winners) say. Nevertheless, our proposal caters for people without computers or computer access as well.

1.2 AIDS INFORMATION WHAT ABOUT IT?

But the battle is far from won. In America alone, a recent AIDS conference in Florence [Flor91] was told that there will be new cases year the mid nineties roughly the same number of Americans dead in the now infamous Vietnam war. The World Health Organization (WHO) estimates that one in every 40 women are infected with the virus in Africa (i.e. 25 in every 1,000, or 1K; compare with 2 in every 1K in South America, and only 1.5 in every 1K in North America-- Figure 1). Perhaps even more worrying is the alarming rate at which the disease is spreading. In Kenya, for example, official figures put the number of full blown AIDS sufferers in 1990 at 12,000; latest official figures put it at 17,000 out of a population of 24 million. The growth rate over a twelve-month period can therefore be put at 41%. AIDS has been reported as the main cause death amongst adult men in Abidjan, and the second leading cause among women (the leading being pregnancy and abortion-related [Huba91] WHO figures estimate Ivory Coast's AIDS cases figure some local doctors feel is an understatement by a factor of 7. Equally disturbing, if not more worrying, figures have been reported for a couple of other African countries, among them Uganda and Zimbabwe (see later discussions). This is not to say that these are the "worst-off"; indeed, that these facts are known and made public may itself turn out to be the very undoing of the lethal ailment. At a recent WHO AIDS Conference in Dakar, Senegal, a WHO representative told participants that AIDS will kill more than 6 million Africans in the next decade, and will eclipse all other diseases as the major cause of death, and that there will be 4 million infants born with HIV in the region [Guar91].

FIGURE 1: RATIOS OF WOMEN INFECTED WITH HIV

However, AISY is unique in several ways. To name a few: i) it recognizes the need to co-ordinate a network of information providers and increasingly information-hungry consumers, ii) it further recognizes that figures are one thing, and the real-world is another; it therefore incorporating a "human-network" for disseminating information. Compare, for example, a computer telling a person at-risk (and we all are!) that AIDS is not limited to homosexuals, with the reknown American basketballer, "Magic" Johnson telling him live that, "I am not homosexual; I am infected"! Indeed, the Johnson case also raised very intriguing issues: how enlightened about AIDS is the US public, or other publics for that matter (see [Mad91]). But how many are bold enough like Johnson come out? The British world-class singer, Freddy Mercury (affectionately known to some of his fans as "Queen") was one such great person. Unfortunately, he did not live much longer. The whole sensitivity, and the deadliness of the disease distuingishes AIDS "information" from all other information.

1.3 WHY KENYA?

All the authors are either Kenyan or committed Kenyanists; they are, therefore, quite reasonably informed of the Kenyan situation. They have all served as either biomedics, educators, and/or information scientists/technologists in the country.

It is certainly not the worst, but the AIDS situation in Kenya is enough to cause concern.

Kenya is a symbol for Africa in several ways. More fundamentally, it is one country reasonably IT-rich, and where we feel our proposals can be realistically implemented.

Kenya brought forth Kemron, one of the "wonder-drugs" now riddled with controversy. Kenya has had enough of its share of the "AIDS drama" from conflicting figures, to strange (AIDS-related) deaths.

Finally, it could never be any more opportune than now, that this particular conference is being held in Kenya.

Kenya is one place where we are confident an information system can be effective. Although there may be conflicting figures, it is undisputed that quite a number of people may be unaware of the necessary precautionary measures. Scores of thousands more (possibly including the medics themselves) may not be entirely abreast with to-the-point latest developments in AIDS research and treatment and that's what Kenyans (like anybody else, perhaps) want to hear. In 1989, menengitis hit the country and killed many people, most of who never knew anything about menengitis before. Some thought it was malaria. A better information system could have made all the difference. Those affected could have been made aware of the symptoms, and promptly taken the necessary remedies. Moreover, the absence of relevant and comprehensive AIDS information can adversely affect planning and utilisation of the very scarce resources.

1.4 AIDS; EVERBODY'S HEADACHE

Recent WHO resolutions have emphasized information services as a vehicle for reaching "Health for All". AIDS should be a concern for everyone. The epidemic requires all of us to address some very serious questions. Quite frankly, there cannot be any simple answers. Resources must be pooled together. Our hopes lie in researchers. But (quoting a recent widely publicized AIDS victim), "...scientists must stop looking at those infected as experimental aids , rather as dying patients ..". In other words, AIDS must not be seen in terms of research projects , but more as a killer disease. And we must stop seeing AIDS for economic gains (eg. the Kemron debacle, and the high fees charged on clinical drugs come to mind), or for political, or other malicious reasons. It must be emphasized that there is no cure, yet. The enlightened should inform those they interact with, particularly the youth, about AIDS especially how to evade infection.

1.5 AN AIDS INFORMATION SYSTEM

Before we can present an overview of the system, it is essential that we present "hard" facts about AIDS to give a clear picture of what may be expected of the information system. This forms the content of Section 2. The "facts" may not be facts, afterall. Medics (like other scientists) time and again disagree. It is known, for example, that a reknown virologist, has some time in the past argued that HIV is not even a necessary condition for AIDS [Madd91] itself widely accepted fact. One the greatest problems faced during this study was the unavailability of reliable data. Some of the figures we quote, we did not have the means to verify. In a few cases, we have found it necessary to report private discussions with researchers and other persons who preferred to remain anonymuous. However, the figures we cite were the best we could obtain under the circumstances, and most of the officers we interviewed had much credibility, and we did not have any reason to disbelieve them.

2. AIDS -- THE FACTS

The acquired immune deficiency syndrome, AIDS, and related conditions are caused by HIV, which attacks the body's defence system, making it less able to fight disease and infection. Most people with "full-blown" AIDS die (within a year or two) from illnesses such as pneumonia or skin cancer, which their bodies can no longer resist. People with less serious infections may suffer from an AIDS-related syndrome (carrying with it a significant, but not yet full-blown infection) referred to as AIDS-related complex (or ARC). As of the time of writing, there is no cure and no vaccine and there is no guarantee that there will be one soon.

This section looks at various aspects of AIDS. In a sense, it should of itself be seen as an "information system".

2.1 WHAT IS AIDS?

What we have all along called HIV has been invariably called HTLV-III or LAV and more recently, HIV-1. It resembles HIV-2 and SIV in several ways. These are discussed in Appendix A.1. People infected with HIV are vulnerable to further infections that a normal body would have resisted. Figure 2a presents an over-simplified AIDS life-cycle. Figure 2b gives a slightly more comprehensive picture, and is discussed in detail in Appendix A.1. An elaborate system of cell count is used to analyse the severity of HIV infection. Below a certain count, the "host" is considered HIV-. With further infection, he or she becomes HIV+, before (fully) developing AIDS in most cases, culminating into death. The reality is not so simple. Not everybody, for example, who is HIV+ ends up developing full-blown AIDS (hereafter simply called AIDS). Indeed, only about 30% of those infected end up with AIDS [DES87] The transition from HIV- HIV+ seems closely co-related with the period between infection and appearance of symptoms) varies widely, and usually spans a period of several years. In extreme cases, people who have developed AIDS are known to have died within as short as 3-6 months. In general, they survive a little longer. In a few cases, there have been reports of reversal of the life-cycle, eg. from HIV+ to HIV-, or artificially (medically) extending the life span. However, as we discuss later, these are indeed very rare cases, and some have been riddled with controversy, making explanations non-conclusive.

Figure 2: AIDS LIFE-CYCLE

2.2 MODES OF TRANSMISSION

A near-obvious question, then, is what "sourced" the original virus? The question boils down to that of "origin" discussed in sub-section 2.11, itself wrought with much controversy. We are quick to liken this scenario with that of the very origin of nature, or rather, mankind (some call it evolution theory a "theory" many centuries since it was first proposed!).

To a lesser extent, the implantation can also occur via semenal and vaginal fluids. And more recently, there has been suspicion that saliva, and other body fluids, cannot altogether be dismissed as a conduit for transmission. First, we discuss some of the more common modes of transfer: (vaginal) sexual intercourse, (intravenous) drug injection, blood transfusion, perinatal (or vertical) infection and sharing certain cutting devices. These infections are congruential , i.e. somebody infected via one method (eg. transfusion) can infect another through a different method (eg. intercourse).

2.2.1 SEXUAL INTERCOURSE

2.2.2: DRUG ABUSE

2.2.3: BLOOD TRANSFUSION

{**The best data suggest that there is about 1 in 60,000 chance of contracting HIV per unit of screened blood. There are other estimates which range between 1:35K and 1:125K [Hjel92]}

There are other rarer ways of blood "contamination", eg. through the reuse of improperly sterilized needles and other medical, surgical or dental equipment, either because of a shortage of facilities, or out of ignorance. Such are only common in poorer sections of DCs, and we discuss them together with other related modes elsewhere.

2.2.4: VERTICAL INFECTION

2.2.5: SHARING BODY-CUTTING DEVICES

2.2.6: OTHER POTENTIAL MODES

The rate at which HIV is spreading especially in parts of Africa, may suggest a need to rethink about the possible "communication" modes. In [Ochu92] see, for example, how some of the areas in Kenya known to have disproportionate AIDS' spread are also known to be homes of (the most terrible, the most numerous, the most aggressive) the mosquitoe. Although there are somewhat more convincing reasons to explain that epidemiological disparity, we see no reason altogether to dismiss mosquitoes as a gateway. A report appearing in The Weekly Review of August 29, 1986 quoted a French doctor who tested several biting insects commonly found in parts of Central Africa (among them mosquitoes, tsetse flies, etc), and found them infected [Wamu91] are even more astounded, considering the report in [Barr85] which says that HIV can possibly remain infectious outside the body for ten days. However, what puts this "hypothesis" to doubt is that for the said region, AIDS is almost non-existent among children from 6-12 years, suggesting intercourse (in case of adults) and perinatal (for infants) as the major transmission modes.

Yet another postulate that might sound weird is that oral contact (eg. mouth-to-mouth kissing) could also remotely be a possible mode of transmission. Saliva is known to host a small fraction of HIV, and has been used in some tests to study antibody positivity (as in [Turn92]). Studies performed showed that HIV can isolated from body fluids (including saliva, blood, semen, and tears -- see [Barr85]) raising questions over normal French kissing possibility claimed have been endorsed by the co-inventor of Luc Montagnier. Be it true that body fluids, in general, are modes of HIV transmission, then the possibilty of infant infection from breast milk should even be of greater concern. Unlike the "mosquitoe" theory, that AIDS is rampant among infants and the sexually active middle-aged may offer some food for thought. Indeed, if such direct transmission were possible, then the proposal by Professor Obudho that pooled breastmilk may be more unsafe than direct breastfeeding from a biological mother [Obud90], can longer necessarily true. Again, noteworthy that such modes of transmission are an extreme rarity.

We shall now highlight some of what are largely believed not to put someone at risk:

HIV is not contagious, i.e. it is not transmitted by casual person-to- person skin contact; it is not transmitted through breathing, sneezing or coughing; it is not transmitted through casual association, eg. by sharing an apartment or a swimming pool with an AIDS patient; it cannot be contacted by donating blood; usually transfusion equipment is not reused; it is not transmitted by touching or sharing "non-cutting" objects used by an infected person, eg. clothes, cutlery, books, etc.

2.3 "At-Risk" Groups and their Socio-Economic Environments From previous discussions, it should be clear that some particular sections of the society are at a greater risk of infection. Below we list some of those groups, in no strict order (it is difficult to cunstruct a strictly ordered table, since the order varies from one place to another; this particular order may be skewed since it attempts to emphasize DC situations):

Prosmicuous men and women (especially prostitutes and their clients)

Homo- and bisexuals

Intravenous drug misusers

Sexually-transmitted disease (STD) sufferers

Certain sexually-active age groups (usually from adolescent to middle-aged)

High-mobility groups (eg. truck-drivers in parts of tropical Africa)

Haemophilic or blood recipients/donors

Perinatally infected babies and expectant mothers

There are obviously other more specialized, as well as broader, risk- groups eg. women (especially in DCs where male chauvanism triumphs), the youth in general (usually because of uninformedness, or in cases where child abuse is not unusual, eg. in the west), prisoners, the military, etc. A recent survey in the United Kingdom among ex-prisoners [Turn92] did suggest affirmative pattern. That, homosexuality not rampant in male prisons) in Africa, may blur the disparity. Statistics on service officers is difficult to come across both in the developed and developing worlds. But we find no reason to think they would be at any less risk than the general public. Indeed, the opposite is highly possible, for example, if we consider the case in the west where homosexuality is not unusual and the normally long spells of isolation from spouses and families. In effect, we are trying to say that other than risky behaviour (discussed in subsection 2.2), and risk-groups, a third significant component that should be taken into account is risky situations [Zwi91]. Although some may appear simply game words, close resemblance can be forged between the AIDS-risk pattern, and Eddie Murphy's movie Trading Places. A group is part of an environment , and an environment can nurture some particular pattern of behaviour. Thus, to a very large extent, the environment (or situation) one finds himself (or herself) in, may make the person in him (or her). A convincing explanation can be inferred for each one of these so-called risk-groups. The jail-bird may have given up on life, and a psychological depression may lead him to drugs or into "abnormal" behaviour (eg. homosexuality or unprotected sex, etc). Economic hardship may have driven the prostitute to commercial sex. Part II reports an exemplary living example. This is not to say that women (or men?) prostitute only for money. Either way, a situation will have preceded a "funny" behaviour. It is like reversing the popular Dutch saying: all bad things come in threes: group, behaviour and situation.

Socio-economic situations are not limited to individuals. Later when we talk about conflicting AIDS statistics, we shall see that while sections of the west may over-state their figures, some African governments may choose to play them down. Occasionally, it is not difficult to tell why. Possibly they do not want to cause public panic. Or, perhaps, they want to protect their tourism industries. What is often forgotten is that: i) potential tourists will have probably heard of figures much worse; further "open" underestimation can only make them suspect, and ii) most of the tourists are not out to "prostitute", whatever that may mean. Were that the case, probably they would all be going to the "hot" holiday resorts in parts of Asia and the American Islands. Is it not surprising, therefore, that despite Uganda's deplorable AIDS situation, there has been a tourist "boom" since 1987 (37,700 tourists in 1987, 41,000 in 1989, 50,000 in 1990) and in monetary terms, expected to grow at a steady rate of 18% per annum [IPS91]. Perhaps the visitors are only interested the animals, and nature's other beauty.

On the other hand, we must not lose sight of the reasons that could have lead individual governments to do all within their means to guard the badly needed forex (foreign exchange) resources. And that's where the socio-economic might (or the lack of it) comes in. It does not stop there. Try to ask why other holiday-making centres have so little AIDS scare (eg. while Burundi, Kenya and Malawi recorded 3305, 9139, and 12,074 AIDS cases respectively, places like Mauritius, Sychelles, and Jamaica only recorded 5, 13, and 201 respectively the population sizes notwithstanding [WHO91] because their populace are any more socio- economically stable? that they are culturally more "civilized"? Indeed, some of the existing "situations" can be used to explain several aspects of the AIDS threat. Consider, for example, the extremely low deaths recorded versus those believed to have been a result of AIDS. Could it be that because of an inappropriate insurance policy, or some other reason, the true cause of death is concealed? Could it be a result of misinformation or underinformation eg. do the people believe that AIDS is an outcast's disease?

Apart from the socio-economic "situations", it may be useful to state some of those factors which have catalyzed the spread of AIDS in some areas. Zwi & Cabral identify them as urban migration, impoverishment, anonymity of city life, migrant labourforce, poor wages and dependency of women, in the case of most (African) DCs. Some of these issues are discussed further in [Ochu92a].

2.4 SOME PRECAUTIONS AND PROTECTIVE MEASURES

2.4.1 CONFIRMED HIV+ CASES

--Seek (where available, professional) advice and counselling.

--Abstain from sexual practice, or where that is not possible, take necessary precautions to avoid infecting your partners.

--Take precaution not to infect people you live with or come into contact with. Be understanding when some of them do not seem to be as tolerant as you would expect them to do not do unto others what you would not like them to do unto you.

--Avoid sharing with others (skin) cutting devices, eg. scissors, shavers, etc.

Since, as has been argued above, most human fluids carry a potential to transmit the virus, take sensible precaution not to pass on any such fluid to other persons (eg. refrain from donating blood, breast-feeding, etc). The same should apply to clothes, dressings or bed linen which are soiled with such fluids.

--Avoid blood transfusions, or rather, situations that may lead to one, and deliberate or accidental mixing of blood.

Although the next precaution applies to everybody exposed to a risk of infection, it is of paramount importance to medical practitioners and other people who look after those infected. It should be noted that HIV has been shown to remain stable under clinical laboratory conditions, and is resistant to most commonly used inactivating agents and disinfectants. Maximum care should be exercised. Perhaps you could live longer to save yet another life! But see also subsection 2.8.

2.4.2 SAFE SEX, OR IS IT ITS ABSENCE?

--Abstain from casual sex, or sex with somebody you do not trust, or with a stranger (but, who is a "stranger"?). In particular, avoid sex with people from high-risk groups, eg. prostitutes.

--Avoid promiscuity; it is a source of dishonesty and may greatly increase the risk.

--Avoid anal or oral sex whenever possible.

--Use a condom whenever necessary which may turn out to be every time you have a relationship.

--Refrain from irresponsible lifestyles which may lead to unsafe behaviour (eg. excessive drunkenness which may impair your reasoning, exposing you to be easily lured into unsafe sex).

--Avoid behaviour or situations that may put you at the risk of being raped; intuitively, criminals would fall in a high-risk group, and in most cases rape results in bruises a potential conduit for infection. Wierd as this may sound (especially in the west where it is the norm for intimate expression), deep kissing is a potential for infection and whenever possible, should be avoided at least with a sufferer or an untrusted person.

We do appreciate that some of the points raised above may be near- impossibe to abide by. We single out the use of condoms as probably the one major protective measure which is likely to be effective (to varying degrees) in both the developed world and DCs for further study.

CONDOMS AND FEMALE CONDOMS: TO BE OR NOT TO BE?

The greatest drawback to condom usage is probably the attitude: what about the bother, the loss of fun from what should be a funny game (or is it?), the possible embarassment of buying them, carrying them, discussing them, using them, disposing of them. Typical remarks include: "it is so unhygienic to use"; "if I carried a condom, he'd brand me a slag"; "it makes sex looks preplanned"; "carrying it is one thing, using it is another", and so on. It must be remembered that apart from a condom protecting against HIV and unwanted pregnancy, it also protects from other STDs. It may be useful to note that since it is a "physical" sheath, it not only protects from seminal infection, but also against blood transfer. It may seem that it is a better protection for the male think of, for example, stray semens or other fluids from the male's unprotected body finding way into the female organs. This is where the recently announced female condoms (rather, condoms for females [Exam92] may come in handy.

The "vaginal pouch" (its alias name) which will sell for about 1.00, was invented in Denmark in the 1980's, and will shortly be introduced in Switzerland and France. The condom is a large lubricated polyurethane pouch with an inner and outer ring; the inner ring is inserted into the vagina, while the outer ring is spread over the front of the vaginal area, thereby protecting the woman from genital sores. This condom has been reported to provide four times better protection than the male ones (ie. about 0.6% leakage). A survey showed that 65% and 80% of their partners approved of it. The condom may prove (when it becomes available) more readily acceptable in Africa where many men would not stop for a moment to think of being "soiled" with a condom. For those too impatient to wait, or who would feel embarassed to wear it, the female condom offers some hope. Cases in Ivory Coast have been reported where many a time the female prostitutes just fail to convince their clients to wear condoms, despite the risks [Huba91]. And battle the women hardly ever win, because the customers simply leave for the next "missus" who is only too ready host him with or without a rubber! Indeed, the need for a condom that the woman can control has long been recognized (see, for example, [Zwi91]), with a familiar statement "You can't always trust man. like charge of my own protection" by an anonymous spokeswoman is reiterated in [FPA91]. However, not clear will any less embarassing for the woman carry the condom.

The use of condoms in Africa is even more complicated by the fact that quite a sizeable proportion is (still) religious, or would so like to make believe. During a recent campaign in Uganda to "love carefully" using condoms, the Catholic Archbishop protested vehemently that the publicization of condoms would serve as a licence to "merry-go-round" sex [Muso91] lively debate erupted between the clergy, and the government, and within parliament itself. A local Ugandan Weekly, Topic, reports two interesting quotes, which seem to say it all the first by a male professor-cum-former-minister: "I do not like condoms myself, but there are people who want to hide their heads in the sand like ostriches and pretend that all is okey", and the second by a female MP who in claiming that some men do not know how to use condoms says, "They fix them on their fingers, and are surprised when their wives are pregnant".

Ochuodho aids thesis discusses how other cultural inclinations mitigate against safe sex.

In the main, it must be observed that good general hygiene, responsible behaviour, and common sense plays a crucial role in all this. It should be emphasized that a single sex "ride" (or is it, anymore?) may result in the release of several spurts of semen, and one spurt contains millions of sperms. In unprotected sex, a single sperm can result in both an infection and an unwanted pregnancy. Although we quote figures in this paper, it must be emphasized that 1% or 99% of the chance of infection may not matter much two people affected under the two different circumstances are, in the end, both the same. One cannot always tell by simply looking, whether a third party is HIV+ or negative. It is probably safer to assume that everyone is positive, and behave accordingly from that platform. In light of the fact that there is no cure, and none execpected in the near future, prevention is the only remedy. This is what makes an information system an indispensible educational tool. As a slogan in [Ochu92a] puts it, Pass the word Save life!

2.5 THE SYMPTOMS AND EFFECTS

Recent evidence has also shown that some eye and skin disorders may accompany AIDS. Brain cells may also be pertubed, causing depression, senility, memory loss, and behavioural disorders. There may also be other minor AIDS-related conditions, eg. fungus mouth infection. Other symptoms include:

--Swollen lymph glands, especially in the neck and armpits.

--Profound fatigue, which may last several weeks, with no obvious cause.

--Unexpected appreciable loss of weight.

--Fever and night sweats, lasting several weeks.

--Prolonged diarrhoea, with no obvious cause.

--Prolonged shortness of breath, panting, and dry coughing.

--Skin disease, newly formed pink or purple blotches, appearing on the skin, including in the mouth or on the eyelids which normally look like a bruise or a blood blister and/or a white coating on the tounge. Again, the mere presence of one or more of the afforementioned, or their absence, gives no conclusive evidence of infection. For anybody worried, the best bet is contacting a medic.

In Africa, the virus has not only resulted in a greater spread of lots of other diseases, but has also had the devastating effect of orphanage (according to a World Bank report delivered on the recent World AID's Day [WR91] caused the disproportionate death from AIDS which seems most devastating among the primary productive age-group of that society.

2.6 SOME STATISTICS

Figure 3: AIDS DATA THE ORTHOGONAL THREE AXES

2.6.1 MATURITY OF INFECTION

Figure 4: AN EXPONENTIAL SPREAD OF AIDS

Another statistical aspect that directly correlates to maturity is the order of magnitudes of sufferers in any particular stage of development (eg. ABC are HIV+, XYZ are full-blown cases, and so on). However, several of such are discussed elsewhere in this paper, and are not pursued any further here.

2.6.2 EPIDEMIOLOGICAL AND RELATED DATA

We saw in subsection 1.2 that the current (full-blown) sufferers in the world, are anywhere over 1 million, with about 8-10 times more HIV infected. 70% of those infected (ie. about 700,000) are believed to live (or be dying) in Africa, with a further 20% in America, according to WHO statistics [Flor91]. Using some widely accepted prediction models, WHO forecasts that the 1990s will see the AIDS epidemic hitting a 9 million mark, and the spread will obviously be faster in the less-advantaged DCs, especially Africa, where the situation is already so bad. Although authority of some of these models (like all estimation models, anyway!) can be questioned, even a "conservative" model (eg. Figure 4, with a half-year periodicity, i.e. a new partner every two months), there is reason to worry for the future.

Other WHO estimates say that, worldwide, over 3 million women [Folk91] reproductive age are infected with HIV. The chance that HIV-infected mother will pass on the virus to her fetus is from 13-45%. It is further estimated that 1 million** children acquired HIV before or during birth in 1990 alone; it would not be unrealistic to guess that more than 3/4 of those were African babies, considering both widely reported high African birth-rates, and the AIDS "epidemic". Anderson et. al. [Ande91] estimate that the doubling time perinatal changes HIV-1 servo- prevalence ranges from under a year among female prostitutes to 1-5 years among the general population. Including lateral infections (ie. non-perinatal infection, eg. by sexual contact, blood transfusion, etc), they claim that the spread appears to have steadied at about 20-30% in some of the worst-afflicted urban centres. {**According to WHO, of the nearly 7 million people believed to be HIV+ in Africa, about 1 million are children [WR91]}

In Kenya alone, there are now approximately 11,000 officially reported AIDS sufferers [WHO91] with many more already identified HIV positive. This out population of approximately 24 million people, making Kenya high-ranking among the "risk-groups", even by African standards. The first case of AIDS was diagnosed in Kenya in 1984. Now the rate of seroprevalence is estimated to be about 1-8% in the general population and 10-25% among the prostitutes [keny91]. Even just taking the conservative number is alarming enough, when one considers the actual numbers involved. And here begins our main problem the lack of, concealment, or overstatement of reliable and accurate data. We have seen above, for example, that WHO approximates the current African AIDS population at about 700,000. The figure reported by African health authorities is little over 120,000 [WHO91] (with Uganda** at one end of the scale, reporting the highest figure of 21,719, and a number of countries, eg. Sao Tome and Libya reporting as little as 1) a difference by a factor of 6. [**Nearly 80% of reported cases in Africa are in a small strip of the continent, enveloping countries like Central African Republic (CAR), Congo, Kenya, Malawi, Rwanda, Tanzania, Uganda, Zaire and Zambia. Combined, the 3 East African neighbours alone constitute nearly two- thirds of them.]

2.6.3 CONFLICTING SOURCES OF INFORMATION

-- Samuel Johnson: Preface to Dictionary.

Partly because of its sensitivity and its personalized nature, AIDS data is at best (where it exists!), unreliable. Much of it has also been sensationalized for various reasons. Several sufferers die undetected. Yet part of what is detected and documented, ends up being under- publicized again, for diverse reasons (see elsewhere in this section).

We have seen, for example, WHO forecasts that 1:40 African women, or rather, women in Africa could be HIV positive. A few years ago, a group of African doctors took strong issue with the statistics coming out of WHO. On the other hand, statistics compiled by the different African governments are themselves suspect. Where does this leave us? It is difficult to find accurate data on AIDS in Africa for several reasons, among them: few people are tested, and most of those who have been tested tend to have come mainly from high-risk groups (eg. STD sufferers, prostitutes, etc), which cannot, therefore, be reliably extrapolated to the general populace; the tests may themselves be unreliable, if not for the (dis)honesty of the testing officer, for the unreliability of the method itself used. Most studies conducted in Africa so far only used the ELISA profile, a test that tends to show false-positive results in people with a history of malaria, tuberclosis, and/or parasitic infections which are all very common in that part of the world. This would make it appear that figures used for prediction (and therefore, the predictions themselves) may be exaggerated. But figures based on such tests are probably not as half the "exaggeration" at least there is a founded basis for them.

More pertubing are figures and pictures painted by sections of the western press and writers. The Chirimuutas [Chir89] persuasive and well researched book, point out how the western media and scientific community have innundated the world with stories of Africans dying of or suffering from AIDS by their "millions". They cite, for example, a case of a reporter in a series in October 1986 who wrote "a catastrophic epidemic of AIDS is sweeping across Africa, scarring the face of the continent and killing thousands of men, women and children.", which the book contrasts with yet another authoritative scholar writing that sections of Africa would expect to have 20-50 times more deaths than contemplated in the US, come the turn of the decade (ie. 1991). As Lal [Lal91] argues review the book, should have had many millions Africans dead from AIDS by now, and if the ominous prophesies of the early and mid 1980s have so far not come true, some western commentators would have us believe that a catastrophe is just around the corner". Perhaps equally worrying, are those newscasters, reporters or scientists who view Africa as one monolithic "country", making several people now believe that "Africa is the home of AIDS". It is even the more interesting when the same media says that "1 in 10 have (full-blown?) AIDS" one week, and the following week the same media reports that "1 in 7 are HIV infected", and 3 years later that "1 in 16 have the virus" [Akak92] even without the audacity and courtesy apologize substantiate). In that same time, we are expected to believe that there is in fact a rise in percentages unless of course, the vast majority of the concerned population has been "wiped out", making percentages less significant.

What with the recent claims that actually some African governments could have over-estimated, and that some of the reported cases had little to do with AIDS. With more modern testing methods, some countries (eg. Zimbabwe [Versi9]) have had reduce their estimates. But would that enough ground breed complacency and mediocrity? It can only be hoped that the strong passions that were initially triggered off by the debate regarding origin have now sobered down to a degree that we can begin to face up to the task of generating more "accurate" estimates and reports. What is probably needed is sound and factual information, gathered and disseminated in an upright and balanced manner. Means may be required to counter and reconcile conflicting data from other sources. Mathematical models might turn out to be nothing more than that yet they might be the only available tool. All interested parties should devise some mutually agreed guidelines (like standards found in many other branches of science and engineering), so that the issue of disputed, fabricated, or inaccurate figures does not arise any more. Planning of sorts relies so much on data, that accurate information should be viewed as indespensible for good planning, and hence, governance. Besides, rather than "look" for figures to back a hypothesis, good scientific practise should demand the opposite: advance a hypothesis to explain an observed and verified fact "without favour or prejudice".

It must also be acknowledged that:

--AIDS information is transient and changes too fast.

--AIDS information is further unique in its very large volume (much of it in electronic form).

--AIDS is but only one of the cruel killers of the third world (remember that about 14 million children in DCs die every year, half-a-million of whom die as a result of the third world's debt burden, as reported by UNICEF [Korn91].

Points 1 and 2, do not require anything short of a (mostly) computerized information system. One problem with even the so-called "reputable" or "archival" scientific journals, is that by the time an article comes out of press, and reaches the intended audience, lots of things will have happened, especially in the AIDS arena. This is partly the premise upon which AISY is founded.

2.7 AIDS TREATMENT, OR ITS ABSENCE

Perhaps the most common drug is AZT (for azidothymidine, trademarked by its producers, Burroughs Wellcome as "Retrovir"). Although clinical tests have shown that it may be effective, it is quite toxic, and about half of all patients with AIDS have usually given up the drug due to severe aneamia, liver problems or other side effects. A newer brand of drugs may prove more effective and less damaging. In particular, it has been observed that a controlled combination of AZT with some of the more recent trial drugs can have much better effect. We briefly introduce some of them below. It may also be useful to note that drugs which instead of attacking the virus, treats some of the known opportunistic infections may just prove as useful. Afterall, a carrier is only ill when attacked by those "stray" diseases!

2.7.1 SOME KNOWN POTENTIAL DRUGS

--Tat Inhibitor [Roch91] The tenet of this drug is that blocking the "tat" gene of HIV may be the most promising approach to develop a suitable drug. HIV tat gene produces a protein which greatly increases activity of the virus; without tat, the virus becomes inactive. A major advantage of this drug over others is that it would probably be effective in chronically infected, as well as acutely infected cells. However, like the other drugs, an anti-tat does not kill HIV, and may need to be taken.

--Hypericin [Jame91] This is an antiviral found in small amounts in the St. John's wort plant, which appears to be a broad-spectrum antiviral. It shows good anti-HIV activity in laboratory tests (including tests on "wild" virus strains in freshly-drawn blood from persons with HIV). Should hypericin prove useful, there should be little problem obtaining supplies, either by synthesis or by chemical extraction from plant sources. The wort plant is found in almost every part of the world.

--ddC and AZT Combination [Krie92, Jame91c] This drug combination is seen as the current de facto standard treatment (for certain patients) by a number of practitioners. Perhaps with approval of the use of ddC expected, this may be a promising "hybrid". Some trial results are reported in [Jame90].

There are several other promising experimental drugs. Perhaps of particular interest to Africa is the fact that some of the drugs currently undergoing clinical tests are herbal**.

Nevertheless, it must be remembered that several drugs have appeared in the past (initially) promising, only to end up in limbo (as may be with Kemron, and the announcement about the positive results of Acyclovir+AZT, which was later declared to have had flaws [Krie92]. We do appreciate that such experimental drugs are still far from being available to the public more so in DCs, and that mention of drugs may lead to complacency. We, however, believe that the best that can be done to the public, is to tell them nothing short of the truth . Left to find out the truth for themselves, there are greater chances of making a mountain out of a hill.

[**One promising herbal treatment is claimed to have been tried in Tanzania and Switzerland with encouraging results [Carr92]. The treatment, previously used with herpes, polio, etc, said restore the T- count. But like now seemingly typical of many AIDS drug inventions, Dr Roka's work has been sold off due to poor health, and it is unclear what happens next. "Drugs" which would fall in this category include Tat Inhibitor, Kemron, and Immunex.]

As a side issue, we do not share the same opinion held by some pessimists, like one who recently likened the search for a cure to "a physics professor saying that although it is theoretically possible to push a chain, only an idiot would try it". Similar observations were made about diseases which were until recently, incurable. Going by the history of science, and recent research efforts in virology, we are positive a cure will be found. But who knows the day? And how affordable are they going to be, especially during initial stages? Some of the more recent drugs are known to cost in the region of UK 50,000 to administer!

2.8 PATIENT CARE AND EDUCATION

Patients, too, must politely but firmly be made to understand their responsibilities and obligations, so as not to infect those who have chosen to provide them with care. We must not forget that those already infected can play a major role in curbing the spread of HIV and should be treated with due dignity and humility.

2.9 TESTING AND BLOOD SCREENING

Several DCs do not have good screening facilities. And in cases where a large proportion of the population is infected, the costs may be very high. Does it still make sense to screen under such situations? Willing donors may themselves be very scarce. In many parts of the world, sections of the commuities which have in the past been a prime source of blood are now known to be high-risk (eg. prisoners, etc). But in a life- saving situation, would it matter if the blood used was "contaminated"? And is that the right decision the patient would have made if s/he was asked while in sober condition? Some blood donor agencies use oral methods to discriminate against accepting blood from high-risk groups. They ask questions like involvement in drug abuse, prostitution, homosexuality, etc. But it has been argued above that even unprotected sex may just be as risky. Well, it is a good way of reducing potentially "unproductive" blood testing. But what effects do such methods have on those turned away, and their acquaintances who may have wanted to offer blood?

In the developed world and sections of the developing world, screening serves as a second check-point layer for filtering out infected blood, followed by a thorough HIV testing exercise. Testing of "screened" blood may be less controversial than the screening itself at least the method will be less crude! How about a test conducted with the sole purpose of establishing whether or not a subject is infected? Firstly, there is no (conclusive) way of telling an AIDS sufferer other than by simply confirming that s/he is HIV+ (i.e. by relying on the T-count). On the contrary, many people with T-counts way below the 200 borderline are known who do not feel unwell in any way. Secondly, although most of the possibly infected blood will be screened out during the second pass, what about those samples that have only recently been infected and have not built enough antibodies to test positive? Here, we must count on probability elsewhere, we have talked about figures! Thirdly, how reliable are our testing devices, especially some of those used in DCs, which may return a different verdict on one person on different occasions?

The testing scene has been even more bleak for infants: until very recently, there were no conclusive testing mechanisms for 3-6 month olds. The recently announced IgA [Folk91] removes that deficiency. true that detecting positivity such early stage may lead to early preventive therapy against opportiunistic infections. But pschologically, how does this augur for baby, mum, and dad if lucky to live longer? Nevertheless, that such a reliable facility exists, and that it is inexpensive may make it particularly attractive to DCs. Another inexpensive test equipment that may be attractive to DCs was reported in [ATF91] and hope will not prove unreliable some methods that have surfaced in the past.

We know of several doctors who would privately discourage their patients from "joyride" testing. This may be particularly common in places where "treatment" is almost non-existent, where there is a high degree of concern for confidentiality, where a positive result is likely to have devastating effects, or where the results may be erronous. A case with which some of the authors are familiar makes them, to some extent, concur with such doctors. An incidence occured in Nairobi, Kenya, in 1990. A patient tested positive at one of the major hospitals. The patient's relative who was a laboratory attendant at the same place, did not believe the result, given that the tested person seemed so full of good health. In an effort to prove the test wrong, he privately did a further test. Still unconvinced with the outcome, he decided to test his own blood, strongly convinced that he was not HIV positive. Alas, to his complete surprise and horror he too tested positive. The poor fellow found this hard to believe, and went to several other major nearby hospitals for further tests, all which proved positive. In less than three months, he was dead. In all probability, he did not die from AIDS, but most likely from shock and despair.

What we form of this is that having a test is not bad indeed, it can make all the difference to what could otherwise have been a written off case. However, good and honest counselling is very vital both after, but especially before one goes in for a test. Besides, the tested should be given an a priori opportunity to decide whether or not he would like to know the results, regardless of the outcome. Should he decide not to know the result, medical officers must ensure that that information accordingly remains completely confidential no dirty games! Such confidentiality may not only mean revelation of the result, but can very easily knowingly (or otherwise) manifest in a changed attitude toward the patient by the administering officers. Under such situations, some form of "blind" testing could be introduced, where accurate statistical information is desirable yet without compromising confidentiality. This may entail going for a test to an area where one is not normally treated. But that proposal raises the question of cost again: as it were, testing is already very expensive. The authors are unsure if there is really any inexpensive means of obtaining accurate and reliable data. There are places in the world where, for example, delivering mothers are compulsorily tested (sexist?), but we fail to see how any non-totalitarian government, least African governments, can institute compulsory testing. Lots of people interviewed in [Ochu92a] had not had AIDS test, nor were they keen have one. Our unqualified recommendation, especially to DCs where high turnovers of positive tests are expected is that, if the sole purpose of testing is to obtain accurate figures, then some "blind" mandatory testing of all or randomly selected deaths should be introduced. We are aware that this might cause an uproar, but it is probably one of the very few avenues feasible.

2.10 RESEARCH AND PRIORITIES

In a recent USENET posting, the City of Waco, Texas, indicated it had apportioned 56% of its AIDS program resources to prevention/education, 34% to HIV testing and counselling, and 10% to social services and treatment [Scha92]. Although this cannot taken representative figure, may give pointer. (Public) education seems to take a large stake of funds allocations eg. WHO-funded and other international agency- supported programmes (as the those in Ivory Coast [Huba91] and Kenya [Ngun91]).

Going by the number of "scientific" publications, a lot of resources seem to have gone into epidemiological and demographic studies. Equally, collossal amounts of resources seem to have gone into other similar research efforts, eg. to establish the origin of AIDS and so forth. However, we believe that the highest appropriations of AIDS research have gone into finding a drug, quite understandably. A bit has also gone into organizing AIDS-related conferences, seminars, and towards electronic communication. We do believe that all these go to serve a very useful purpose. However, we take particular issue with those who venture into research to "prove a point", or those who want to make a killer disease an experimental or economic playground.

In the main, it is important that we allot more funds for AIDS research and education, and apportion resources appropriately. We propose the following as an order of priority, beginning with the highest:

--treatment and drugs research

--molecular biology/virology (HIV-related) research

--information dissemination and research

--statistical and epidemiological studies

--co-ordination and management of AIDS research

--search for origin, and socio-political studies

The order recognizes that no matter how long it takes, AIDS can only be contained when a cure is finally found. Many authors, especially information scientists (and some pessimists) would want to make believe that the only strategy is to "educate", in the hope that the message will get across. There are even those who have likened AIDS-cure research to cancer research, saying that continuing to invest in research for a cure, will deplete resources, leaving none for education and prevention with a result that more and more people will become infected, with no cure to save the situation. We do not want to undervalue the essence of education, especially with no cure in sight. However, we strongly believe that in the end, it is the cure that will eradicate, or reduce the threat of AIDS.

We have also failed to treat research management and administration as high priority, contrary to the belief held by many (especially social scientists), that without sound management, nothing succeeds. While appreciating that fact, we also take issue with projects that consume all the resources in planning and administration, leaving hardly any for the "real thing" (see also [Ezig91]. A further divesture that, while many may dismiss research towards establishing the origin as malicious and misguided, we do believe that even if it does not hold the key to a cure, it may increase comprehension of the nature of AIDS and other related illnesses known or unknown. However, we put it at the bottom line.

On the hand, there are those extremists (including a contested HIV co- discoverer), who believe that establishing the origin should be the focus of intense research. We are sure several sufferers would not care an iota whether the origin was a "hunting" accident, malarial research, or simply a "natural" genetic mutation. And unlike other authors (eg. [Serw90]), who seem believe that research emphasis should epidemiological and behavioural aspects, while appreciating the essence of good book-keeping, we see little sense in wasting huge sums of money gathering and analysing data that is itself suspect.

Overall, we believe that the priority order above would be useful, especially to DCs where resources are so scarce. And the way the search for a drug at the moment seems so hay-wire, we do not see a reason why DC's research cannot be expected to produce useful results in light of recent reports emanating from various parts of the world.

2.11 THE ORIGIN

The first AIDS case was reported in the USA in 1981 [MMWR81]. Then, it was widely believed that AIDS was gay related ailment, earning it the code-name GRID (for gay-related immune deficiency). In 1983, the first recorded African AIDS case revealed in 1983 [Clum83]**. {**More recent reports have claimed that a death case of a Danish in Zaire in 1977 [Vers90] was a result AIDS. An even earlier death in the UK has been traced to 1959 [Corb59]. Other cases central Africa have also been published.}

Since then, one hypothesis after another has been advanced to reveal the nature and origin of AIDS, but all have basically remained at that hypothesis. The origin of AIDS is perhaps the most controversial and highly sensitive aspect of AIDS the world over. Names have been called; attacks and counter-attacks (sometimes heavily scathing and highly explosive) have been witnessed. And it all seems to recur. Soon after its "discovery" and the subsequent "exodus" to understand, conquer and least, to establish its origin resulted in some very unpleasant debates especially in the press. Then all this subsided, but have since sporadically re-surfaced, whenever a new "theory" has been put forward. It has been argued that the origin may lead to a better understanding of the nature and behaviour of AIDS and related diseases, and may hopefully point to a possible vaccine.

Today, the most notable postulates are that, AIDS:

--was a result of "immoral" homosexual activity,

--is an ancient disease emigrating from some African village, and

--was a(n accidental or deliberate) result of some genetic engineering or microbiology experiments in the developed world.

Different reseachers have adopted one or more of these as platforms for further exploration. More recently, for example, it has been suggested that the virus could have been passed on to man from other animals, eg. sheep or goats [Chir89], or monkeys [Gilk91, Lal91].

Alongside the "hunt" for an origin, was the "race" by virologists to "anatomize" HIV. A history of AIDS/HIV is not complete without mentioning those who "unmasked" it: Robert Gallo working in Washington [Gall85] and Luc Montagnier working in Paris. What has now become accepted HIV was initially known to the French team as LAV (Lymphadenopathy Associated Virus), and to the American group as HTLV- III (see Appendix A.1). There have also been (unpublished at least in scientific journals known to the authors) claims to the effect that AIDS resulted from an accidental product of a US biological warfare research [Morr91, Cant90]. In short, AIDS has been riddled with explosive) controversies from the very offset. Our contention is that despite the situation being already so pathetic especially if looked at from a patient's perspective the "politics of AIDS" cannot do anybody any good. From recent revelations, it would be foolhardy to assume that there could not have been AIDS victims even much earlier than those so far on record. If the purpose of unearthing the origin is to foster and accelerate the invention of a cure, with a demonstrated and solicited goodwill (not prejudice or animosity) then so be it. All we can afford to do is to fight the spread of this damn horrifying death-agent and that is where a "faithful" information system comes in. Here, traditional sciences seem to have let us down, arousing the question of unqualified faith in "refutable-scientific-journal" bibles by some. Inaccuracies, or rather unverified hypotheses are not limited to the origin/nature of AIDS. As we have seen above, it is perhaps more worrying in epidemiological statistics. They simply add an order of magnitude to what as it were is already a very deplorable situation. A sense of responsibilty and restraint (and honesty) is required in every body's part. The projected 40 or so million who will be infected by the turn of the century are probably no longer interested in where the virus, so "determined" to persecute them, came from!

2.12 WHY THE YEAR 2000?

In Africa, despite the usual high population growth-rates, it is believed that in some of the worst-afflicted areas, it is likely to change population growth rates from positive to negative in the foreseeable future [Ande91]. While lacking any evidence tie the two together, that the growth rate for Kenya has recently fallen from the steady 4% to 3.3% [Ndir91] may raise some eyebrows. Ivory Coast, predicted that deaths from AIDS could be as high as 30,000 annually [Huba91]. A recent WHO AIDS conference Dakar, Senegal, was told how AIDS pitted eclipse all other diseases as the continent's number one killer in the next decade, claiming more than 6 million lives, and bringing into the world 4 million infected infants [WR91b]. The same report says that about hospital beds some African cities are already earmarked to AIDS patients, and that in some rural communities, entire families have been wiped out. 14 million people in Africa are expected to have HIV by 2000, and "AIDS would have a far worse impact on Africa during the 1990s than the previous decade, because 90% or more of those now infected but not yet sick would develop the disease and die". What a future! And Africa is not alone in all this. There is little doubt that AIDS represents the biggest health challenge of the century world-wide. It is predicted that 90% of AIDS cases will be in DCs by the year 2000 and that does not only mean Africa. It is believed that there are already nearly half a million people infected in Thailand [Conf91], and that there will be quarter new cases every year South-East Asia by 2000 (a quarter of the world's prediction for that year).

To raise a ray of hope, some US researchers now believe a vaccine may be found by the year 2000 [Trib91]. Some discussions earlier sections may further boost such hope. But there is also the danger of feeling a false security. Our tenet is that, the year 2000 must see a dramatic change in the world order, as far as AIDS is concerned. We predict that either certain sections of the world (especially DCs) will have been wiped out remarkably, or (because of escalated information campaign) people will have completely changed their lifestyles accordingly, a cure or vaccine will have been found (and AIDS will just be another STD or chronic disease recall the battles against small-pox or polio?), or the human immune system will simply have learnt to fight off the disease (even if that simply means developing a natural therapy to keep HIV inactive for a normal human life). The last claim, remote as it may sound, seems feasible, especially going by cases where it has been claimed that when the immune system is totally destroyed, an infected person can once again test negative [USEN92]. Things cannot remain the same!

3. An Integrated AIDS Information System (AISY) A Summary The spread of the AIDS in Africa (and in several other countries developed and developing) is dismaying. To some, the "AIDS threat" is an unfounded and unnecessary alarm. To others, African governments simply want to save their faces and continue to attract more tourists by overtly understating epidemiological statistics. Yet to others, especially those to whom it should matter, it just does not matter AIDS is just another disease. No matter how we conceive it as an "African" problem, or a burden implanted on Africans by the western scientists and media the fact is that AIDS has already claimed (and will continue to threaten) thousands and millions of lives. It should be everybody 's concern, and it is only through a concerted effort that we can defeat it if ever. From the general public, responsibility and humility is required. From African governments and Africanists less sensitivity. From the West (especially its Media), responsibility and sympathy.

Overall, we see a key role for information scientists in all this. This paper has reported some "facts" about AIDS, and given a rationale for the need for an effective information system with at least some of its components computerized. AISY is just that kind of system. Computers alone cannot solve half the problems of AIDS. Besides, any information system that does not build upon existing practices is doomed to failure. Having recognized this fact, AISY proposes a "manual" component, to which the computerized subunit proposed herein is only subordinate. The manual system is discussed in detail in [Ochu92a]. The remainder of our discussions assumes the computerized component.

3.1 SERVICES AND TARGETED USERS

In effect, AISY will be a useful tool and information repository for everybody, from the researcher to the curious student, from the school teacher to the bar maid, or parking boy. Nevertheless, the people who stand to benefit most from the system are those seriously and actively involved in AIDS and information systems research, and those threatened with infection, or already infected. Indeed, most of (if not all) the information presented in Section 2 is expected to be readily available on-line, and will be updated regularly. What makes AISY unique is the fact that unlike most existing systems which are one-way, it will allow users to not only interactively ask questions, but also to share their views and experiences with others "listening". In particular, they will be able to confirm or dispute some of what are today believed by authority to be facts, and thereby making substantial contribution to the ongoing research itself. We largely see the struggle against AIDS as an "information war", and only through unrestricted information flow can it be won. And that is exactly what AISY aims to do.

3.2 SOME SIMPLE EXAMPLES

3.2.1 EXAMPLE 1 ELECTRONIC COMMUNICATION

SESSION 1

AISY**:

[**It is important to notice that part of this answer has been taken from Section 2 of this paper.]

The acquired immune deficiency syndrome (AIDS), is a disease that destroys the body's natural "protection", or immune system. Normally, AIDS is caused by a viral (HIV) infection. Viruses are minute organisms that reside in every living creature, and usually do not cause any problems unless the immune system is destroyed. A "healthy" body produces antibodies that protect it against infection; an odd feature of HIV is that it alludes attack by antibodies, leaving those infected vulnerable and "unprotected" against attack by other common diseases, eg., pneumonia and malaria.

User: ......

AISY: ......

SESSION2

Researcher 1: Here is a question I have been wondering about:

We know that the HIV virus is a "retrovirus", one of the few viruses that is able to insert its own blueprint into the DNA sequence of its hosts' cells. Has it ever been shown to be possible (or conversely, impossible) for HIV-produced DNA to be inserted into a sperm or egg cell, to thus be passed down to an unfortunate descendant as part of his/her genetic sequence? Note that this is not the same as a child being infected through contact with its mother. Rather, a child might carry an infected DNA sequence inherited perhaps from its grandfather, and thus begin to manufacture HIV? If it is not possible, why not? And if it is possible, how likely is it?

Researcher 2: First, the simple answer. Yes, a retrovirus can infect a germ cell (an embryonic cell which is destined to develop into an egg or a sperm) integrate itself into the DNA and can be transmitted for ever and ever as part of the perpetual genome of its progeny.

That said, this is not an easy thing to do. In men, the regions of the testicle that produce the sperm are separated from the rest of the body by what is commonly referred to as the blood-testes barrier. This is a defence mechanism that probably evolved just as a mechanism against viruses and other pathogens. In women, all of the eggs that she will produce in her lifetime are laid down during a very early time period during development By doing this, they are probably protected from retrovirus infection since optimum retroviral incorporation usually requires active replication. The quasi dormant eggs are thus not probably good targets for the virus.

Even so, most mammals carry around in their genomes remnants of just such events. For instance, mice have many endogenous retroviruses in their genomes. As it turns out, most of these are no longer active. The reason for this is that the female half of the equation is pretty good at screening ......

Researcher 3: A very intelligent question. There are retroviruses that have been shown to do this in animals. The term is "endogenous retrovirus". The "conventional" kind are termed "exogenous". Once the germ cell (egg or sperm) contains the virus's genetic material (the "pro-virus"), it is passed to subsequent generations.

No one has yet discovered an endogenous retrovirus that affects humans. But I think it's simply pompous to think they couldn't exist. Only a few years human retroviruses were completely unknown. But HIV has not been shown to infect either sperm or egg cells, so I don't think this very interesting subject merits particular worry.

3.2.2 EXAMPLE 2 COMPUTER-AIDED TRAINING

It needs no emphasis to note that (trained) personnel shortage is acutest in DCs. And the few who are available may have little time left for further training, or for professional updating. The shortage of trainers for medical and paramedical officers is perhaps even acuter. A computerized, distance-learning system would make much difference. When fully implemented, AISY is expected to play that role. Initially, it shall be targeted at (re)training nurses and clinical officers on things like AIDS diagnosis, and patient care.

When the user enters a "Diagnosis" session, for example, s/he may select AIDS Examination, Females , which tells him or her the procedures to follow when examining a female AIDS patient. A similar (promising) facility has recently been proposed managing STDs within a section of the Zimbabwean health service [Bley87, King90], from where the example in Figure 5 was adopted.

Figure 5: AN ILLUSTRATION OF AN STD PATIENT DIAGNOSIS PROCEDURE

By clicking any of the "buttons" shown in the figure (eg. background, vulval inspection , etc), further information can be obtained. For example, clicking " background " pops up a window that gives background information about STDs and about usage of the system itself. We envisage that AISY will provide a similar facility, only that it will (at least initially) be limited to AIDS work.

3.3 REQUIREMENTS AND CURRENT STATUS

AISY is an ambitious and ongoing project. There is little doubt that huge investments will go into, and have already gone into it. That is to be expected of a project of this scale. Can DCs afford the "luxury"? And where will all the network components come from? The manpower? Here, we have to restrict ourselves to the Kenyan situation.

As more and more people in the country begin to appreciate the time and cost saving capabilities of a computer as a tool indispensable in the day to day running of an organization, the computer market continues to grow steadily. There has also been much recent interest in electronic communication in Kenya, mostly by international and foreign friendly institutions, but also by indigenous Kenyans themselves. Communicating with AISY will not require a very sophisticated computer, and the perceived widespread availability of personal computers will be useful if its original aims are to be achieved. There are a number of ongoing projects, which may form the backbone stream for AISY. The AFRINET project [Bell91] is one example. The regional HealthNet project [Jens91] is yet another. The recently formed international chapter Kenya Computer Institute (the national computer body), shares some common goals with AISY. As we have said above, AIDS can only be combated with a united force. All possibilities of co-operation will be explored with interested parties. And this will not be limited to Kenya.

On this background, we believe that the future looks bright. To design and develop a computer system of this scope requires much effort and commitment. It will be necessary to recruit and train engineers, as well as system operators. AISY will heavily rely on the groundwork already set by a sister-project, PVC-M [Ochu91, Ochu92b]. PVC-M addresses most the technical design issues process modelling, data analysis, or software design methodologies). However, further work will be required to bring AISY to fruition.

As an immediate step, several existing similar systems (eg. COMODA [Patr89]) are already being experimented with see which ones can best customized for use as components of AISY 's prototype. Although a comprehensive discussion on technical similarities and differences between AISY and such systems falls outside the scope of this paper, it is important to note that:

--most of these systems are one-way (in the context described above),

--they are not tailored to the local requirements (eg. portions of AISY will support Swahili conversations, or other local dialects),

--none of these systems is "integrated" in the sense that they support a "manual" component (like AISY does), which is so pivotal for third world information dissemination.

It may be queried that what happens with AISY in the (unlikely) event that an AIDS cure is found the next day? What of all those invested resources and wasted efforts? Firstly, even if a cure for AIDS was found, it is unlikely that it will be widely available in DCs soon after. Secondly, "prevention is better than cure"; and that is the message AISY is preaching. Thirdly, the system is so highly tailorable, that it should not be difficult to convert or extend it to support other widespread diseases, eg. STDs, cholera, malaria, etc. Indeed, it could be used for all manner of education (eg. to propagate administrative and social information) and collaborative research. Fourthly, the whole exercise itself brings with it the much needed expertise, and the experience gained would go a long way to serve as a motivating vehicle for similar projects especially considering that several people working on this project will be locals. However, the object is not so much to enhance IT literacy, as it is to preach the AIDS-threat gospel. It is with that in mind that we hope the reader of this paper realizes that it serves a dual role, and is targeted to all man- (and woman-) kind.

Appendix A.1: AIDS AS THE SCIENTISTS CONCEIVE IT

Although AIDS continues to spread unabated, scientists seem to have largely agreed on most of its "internal dynamics", or anatomy. Most of them agree that it is HIV that breeds AIDS and because of the fatality of AIDS, HIV has perhaps become the best studied and (assumedly) most understood virus. We have seen that a HIV infected person is prone to "opportunistic" infection, which could be viral, bacterial, fungal or protozoan. In the bloodstream the home to HIV there exist several cells. Of particular relevance are a category of white cells, called T- lymphocytes (invariably simply called T-cells). T-cells are the shields that protect a host from attack, by destroying any dangerous organisms. There are two types of T-cells: T-suppressors and T-helpers (also known as CD4 cells). An AIDS sufferer has severely reduced or incapacitated T-helper cells, exposing the body to a wide open attack from other infections. The fewer the CD4 cells, the higher the "positivity" of HIV infection. Indeed, many HIV or AIDS tests are based on the number of these cells in the body. The US Centre for Disease Control has recently set a threshold of 200 CD4 (or T-count) to declare a host an AIDS case**. A "normal" person could have a T-count of well over 800. {**A more pragmatic definition of AIDS evolved from an AIDS workshop held in Bangui, Central African Republic in 1985 (into what has now been dubbed the Bangui AIDS definition [Dayi91]. According to that definition, a person is conceived to have AIDS if he or she has at least two of the three major symptoms, and at least one of the minor symptoms, in the absence of known causes of immunosuppression (eg. cancer or severe malnutrition). Of the symptoms presented in Section 2, the Bangui definition consideres the following as major signs: sudden weight loss of more than 10%, chronic diarrhoea lasting more than one month, and a prolonged fever lasting over one month.}

In actual fact, a person may have a T-count well below 200, and yet continue feel very fine. Conversely, a T-count of over 200 does not exonerate one from having AIDS. Ideally, the percentage of total lymphocites should also be taken into account. The two measures do not necessarily tally, and there are a group of virologists who now feel the latter may be more significant. Yet there are other scientists who believe that the suppression of CD4s is due to another immune cell, which does not get affected at all. Perhaps, here lies part of the unreliable testing we talk about in the paper, and the non-conformant observations that have been difficult to explain. Better understanding of the behaviour of these cells may give clues to a possible cure, or suggest a way of prolonging survival. It is not illogical, for example, to propose that a means be found of isolating existing T-cells and replacing them with "undefiled" ones. Although they too will ultimately be attacked, a life will have been prolonged. Sadly for mankind, the immune system is in itself very complex.

HIV is retrovirus , i.e. it is one of those few viruses able to insert its own blueprint into the DNA sequence of the host's cells, as explained above. There is no conceivable way of eliminating it, except by destroying all of its DNAs, which suggests killing the cells. Yet a further problem with finding a cure! Other retrovirus immunodeficiency viruses include HIV-2, believed to be prevalent in parts of Africa, and animal-related ones, eg. SIV, FIV, etc. There are also other similar (but tumour) viruses: HTLV-I and HTLV-II, whose study is believed by some to have revealed HTLV-III, now called HIV-1. Their discussion is outside this paper's scope.

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From:IN%"shem@minster.york.ac.UK" 14-FEB-1992 13:29:18.97

To:afriqnews@Athena.MIT.edu, AFRICA-L@BRUFPB.earn, kenya-net@ftp.com

Subject: An AIDS Information System

Editor: Ali B. Ali-Dinar

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