Australian Broadcast Corporation, Broadcast Monday 14 May 2001
with Norman Swan
Professor Jack Caldwell, a world expert on AIDS in Africa, explains in a talk he gave as part of Science Week earlier this month in Canberra, why HIV-AIDS is so common. Also, AIDS orphans, a study in the U.S. looked at children whose parents have died from HIV-AIDS.
Norman Swan: Welcome to the program.
Today on The Health Report, a study of children whose parents have died from HIV-AIDS which seems to show they improve psychologically after the loved one has gone. Can this be applied to other causes of parental loss?
Find out after listening to a public lecture I chaired in Canberra a few days ago as part of Science Week. It was organised by the John Curtin School of Medical Research and focused on HIV-AIDS.
Professor Jack Caldwell of the Australian National University is a giant in a field which he and Pat Caldwell have virtually invented. Experts throughout the world use his findings and terminology. Itís about the transition of developing countries to developed, and how that affects peopleís health. This isnít some remote topic because as one medical historian has said: ĎWhenever we change the way we live a new epidemic arisesí, and as we all know, when it comes to new diseases, the world is a very small place.
And sure enough, in the course of Jack Caldwellís career, something did come along which changed things forever, and that was HIV-AIDS.
It has especially devastated sub-Saharan Africa, but for reasons which have not been well explained. I was quite surprised by some of the things which Jack Caldwell had to say at the National Convention Centre, and I think you might be, too.
Jack Caldwell: Thank you.
The AIDS epidemic is comparable with other great historical disasters. So far, 50-million people in the world have either died from AIDS or are currently infected. This compares with around 25-million deaths attributed to the Black Death in 14th century Europe, or a similar number in the influenza pandemic of the early 20th century.
Admittedly the base populations were then smaller, but there is a part of the world comparable with the Black Death. 70% of those with AIDS are in sub-Saharan Africa, and 50% are found in 17 contiguous countries of East and Southern Africa, where only 4% of the worldís population lives. This is very similar to the experience in Europe of the Black Death.
In this area, adult HIV infection levels are everywhere; above 8% of the adult population and in Southern Africa, they rise to over 20% and in one or two countries, to over 30%. The higher levels of infection translate to a doubling of the mortality level, and reduction of the life expectancy by up to 20 years, something that we never thought weíd see in a whole range of countries in the 20th century.
Elsewhere in sub-Saharan Africa, levels are lower, apart from the Ivory Coast, and thatís because of the peculiar nature of Abidjan and the migrants to it. Beyond Africa, levels are much lower: they range between 3% and 5% in some of the countries of the African Diaspora in the Caribbean, and in Asia nationally, there are two countries with high levels: approaching 4% in Cambodia and 2% in Thailand.
These levels can be compared with 0.7% in India, 0.6% in the United States, and under 0.2% in Australia and Western Europe. In other words, Botswana has 200 times the level of HIV infection that Australia has.
The ratio of males infected to females infected is 0.9 in sub-Saharan Africa, in other words there are more females infected. Thatís the only place where you get that kind of ratio. The male to female ratio is around 1.5 in the Caribbean and South East Asia, around 4 in Western Europe and North America, and 15 in Australia. The excess of women infected in Africa is explained by the fact that there it is almost entirely a heterosexual epidemic, and the females are more easily infected than males. It is extremely doubtful that Asia will ever be faced by an epidemic of Africaís proportions, and likely that any move in that direction could be countered by the kind of measures that Thailand has taken. They wonít all be as efficient as Thailand, clearly Cambodia isnít. The closest approach is where the sexual cultures are most similar to Africa. In two of the hill states of north-east India, and possibly in the future in Papua-New Guinea; Papua-New Guinea statistics are very poor, but Iíve recently done a report for the government that shows that something rather ominous is happening there.
For the last 14 years the Health Transition Centre of the Australian National University, first working within the demography department, and more recently within the National Centre for Epidemiology and Population Health, has been carrying out collaborative work with African institutions on the cultural, social and behavioural context of the sub-Saharan African epidemic, with major support over the last decade from Swedish technical aid. This is the largest effort of its type, and the following conclusions are drawn from the program.
In contrast to the old agrarian countries of Eurasia, female sexuality outside marriage was never regarded in most of sub-Saharan Africa as the ultimate sin. It wasnít identified in traditional religion with sin, as it was in the world religions that came out of South, South-west Asia. This prevented African women from suffering the kind of subordination found in South Asia and the Middle East, but eventually, after aeons, they incurred a higher risk, first of STDs and then of HIV infection.
There are reasons why sexual flexibility is needed in Africa. Men marry at a relatively advanced age in a polygynous society because there is no other way of ensuring enough wives to go round. And women postpone resuming sex for long periods after birth in order to ensure the survival of the child. The result was in our research area in southern Nigeria, that monogamously married men had sexual access to their wives for only about 40% of their married lives, and men on average werenít married under 30. So quite a degree of sexual freedom was allowed, because otherwise the old men knew that society would fall to pieces.
Much of the extra need for sex by men was traditionally absorbed within the extended family, with the manís fatherís youngest wives or brotherís wives. But missionaries regarded this as incestuous, and more dangerous commercial sexual relations subsequently resulted.
Now what are the conditions of an almost purely heterosexual HIV-AIDS epidemic, the kind of epidemic that is found only in sub-Saharan Africa? Purely heterosexual AIDS epidemics are difficult to sustain because heterosexual rates of transmission are low. For most of its history the WHO AIDS program took it that in one sexual act between two partners, otherwise healthy except for the one who was infected, there was only one chance in 300 of a man infecting a woman, and only one chance in 1,000 of a woman infecting a man. Now they are not the kind of figures that sustain an epidemic.
But the explanation is that these chances can be raised by co-factors, such as ulcerating sexually transmitted disease. The conditions that sustain the African epidemic are the following:
First, a fairly high level of different sexual partners, probably at no higher level of sexual activity than is found in the West.
Two, a significant proportion of extramarital sexual relations being commercial.
Three, the worldís poorest health system because these are the worldís poorest countries, failing to control the STD co-factors.
Four, a failure of the fear of AIDS to significantly change sexual behaviour patterns.
Fifthly, the worldís lowest level of condom use.
Even this pattern is insufficient to produce a major epidemic in West Africa. The epidemiological evidence seems to me to be irrefutable that the additional factor in East and Southern Africa is large populations of males who traditionally do not circumcise.
This brings us to the question that our research program has been battling with over the last dozen years or more. Thereís not a lack of education which has failed to bring the epidemic under control; all surveys of the main AIDS belt, down East and Southern Africa, show that nearly everyone knows the danger of high-risk sex. The explanations at the individual level include the following:
A belief, almost inevitable in a polygynous society, that men are biologically programmed to need more than one partner;
A belief that infection will not occur unless witchcraft is also being practised against one;
A belief, not altogether implausible, that over the long latency period one might die of something else;
And a belief that the timing of death is predestined.
Different factors at different levels in different parts of sub-Saharan Africa, but the explanation lies amongst that group.
The failure of government and international agencies is more complex. The main AIDS belt is very largely Christian, and has been converted within the last 100 years. Quick conversions of this type have necessarily to be of a fundamentalist kind, and nearly everyone believes that sex outside marriage is sinful. They also feel it to be inevitable, but shameful. Thus there is silence. No-one knows whether the funerals they are attending can be attributed to AIDS; no-one demonstrates against government inaction, although the ABC showed a demonstration the other day in South Africa. Government leaders feel much the same and believe that they have nothing to lose by inaction, and they do not incur the wrath of the churches by such inaction.
There is opposition to providing condoms to adolescents, or to sex education in school. The situation can be contrasted with the successful containment of AIDS by the gay community in Australia in the early 1980s, which was based on their recognition of their sexuality, their high risk situation, and the steps that needed to be taken to reduce the danger.
International agencies in sub-Saharan Africa are in much the same bind and express themselves in much the same abstract and ambiguous language as governments do. No-one says that much lip service to the Christian marriage is not the whole answer. In terms of mortality, the situation is that of total war, that is in terms of the losses due to the disease. But governments do not adopt that viewpoint. Only President Museveni in Uganda has given high profile leadership, and only in Uganda are HIV levels falling. Yet even there, the position is not clear-cut. AIDS has, or is in the process of killing the same proportion of Ugandans as Russians died in the Second World War. The Uganda HIV level is still equal to the average of the main AIDS belt, and it is possible, as some argue, that the main factor was burn-out, as in other epidemics, namely that those of higher risk have been the ones most likely to die.
Finally, let me note that no-one is certain whether AIDS originated in Africa or not. What is certain is that the present global epidemic was not present in Africa earlier than in North America or possibly elsewhere. We know the people who work, who are in charge of the small rural hospitals, and they began to report in 1982 and 1983 in Uganda and Burundi, that people were coming into the hospital with peculiar symptoms, nothing very specific, in ways that had not happened before.
Let me also note that unlike the Black Death, populations have been growing so rapidly, that there wonít be huge reductions in population, but we now know what we didnít believe only three or four years ago, that some countries may actually have negative growth.
Norman Swan: Jack Caldwell, thank you.
Norman Swan: Professor Jack Caldwell whoís Director of the Health Transition Centre at the ANU in Canberra. He was speaking at a public forum I chaired on HIV AIDS during Science Week.
There were a couple of tantalising comments during his talk; the one on the increased risk of HIV in uncircumcised men, and the ominous reference to our near neighbour, Papua-New Guinea.
Jack Caldwell: The story is that the only place where weíve got even relatively good information, is from the Medical Schoolís Hospital in Port Moresby. It shows a rate of increase of HIV-infected people coming in over the last three or four years, that if you project it, only over half a dozen years, reaches really high levels. We donít have spectacular figures outside Port Moresby, but most people in these other areas can count more people they know who have died of AIDS than the statistics show. There is great similarity in many features of the cultural and sexual life of Papua-New Guineans with sub-Saharan Africa.
Papua-New Guinea, according to our reckoning, should have had a major epidemic years ago, parallelling Africa. The reason it hasnít had it is probably that Port Moresby is so small. Even in places like Uganda, the epidemic might die out without the larger urban areas. You get a continual feeding back into the rural areas, of people infected in the urban areas. It may just have been that Port Moresby was too small and is now reaching the critical level.
Norman Swan: And, what about circumcision?
Jack Caldwell: What we have been able to look at in sub-Saharan Africa are whole ethnic groups that either circumcise or donít circumcise. The fact that there are whole ethnic groups means that we can treat them as a unit for the purpose of getting correlations. This probably has a multiplier effect that you donít get in communities with greater mixtures. But we have the evidence of levels of HIV, we have the evidence for each ethnic group on the circumcision status of males. The correlations look so convincing, not only between countries, but between areas of the same countries, which donít circumcise and do circumcise. And in East Africa they cut right down through the middle of Kenya and Tanzania and so on. But if you were tackling a less controversial subject, and if WHO hadnít been so terrified of circumcision rearing its head again, I think everyone would have been convinced long ago. People who worked on this in 1989 like John Bongarts who is a leading statistical demographer, Bongarts was so convinced by the evidence he says there is no point in going further on this, and turns his interest to other things.
Norman Swan: So that by this theory, if youíre circumcised the risk is lower, at least in sub-Saharan Africa? And the theory is that thatís due to genital ulceration, or what? Whatís the reason?
Jack Caldwell: Well epidemiologists then leave it to the bio-medical people and there has been some work done, some in Melbourne recently, trying to find the relationship, but donít forget that many of these relationships, as with smoking and lung cancer, are proven by epidemiological means long before the medical mechanisms are ever discovered.
Norman Swan: Jack Caldwell.
Itís been estimated that world-wide there are 10-million orphans due to HIV-AIDS, and if studies among American adolescents are anything to go by, the consequence is a traumatised generation.
Mary Jane Rotheram is Professor of Psychiatry at the University of California, Los Angeles, and sheís been following a group of such families.
Her findings, like Jackís, are not necessarily what you might have imagined and Professor Rotheram feels some may be applicable to children whose parents have died of other causes, such as cancer.
Mary Jane Rotheram: This is the first longitudinal study of adolescents whose parents have died, and in this case the parents have died of AIDS. The last time we studied such a problem was middle-class children who had a surviving parent, and one parent usually had died of cancer. But these are African-American and Puerto Rican families in New York City, where in the United States thatís about one-third of the families with AIDS. In these families, half of the parents have died. Now these parents were diagnosed with AIDS about six years ago, and at that time they were expected to die within about a year. But there have been substantial medical advances, and these families, these parents have survived and now theyíre on anti-retrovirals and they might live quite a long time.
Norman Swan: What have you been finding in terms of the effects on the children?
Mary Jane Rotheram: The children are doing much better than we expected. And in fact, among families where the parents have lived, itís more likely that the kids will be experiencing a higher rate of anxiety and what we might call post-traumatic stress disorder, a clinical diagnosis. And in some way, when the parents have lived, the kids are really under chronic stress on a day-by-day basis. You donít know whatís going to happen, your lives are in a point of flux, these parents often still have on average 15 symptoms that mean that theyíre sick a lot of the time. These are struggling families, where thereís been a long history of substance use, and in fact one in six of the families have already lost somebody, someone in their nuclear family has died. And theyíve experienced more violence than the norm.
Norman Swan: Youíve been studying them to see what you can do to help, what sort of interventions and whether they make a difference; what have you been doing?
Mary Jane Rotheram: Weíve been running Saturday workshops, and actually we offer a series of three different types of Saturday workshops that are geared to the different stages of illness of the parent. So when you first find out you have AIDS, a parent is faced with a number of choices, and for women in particular, they found out that they have HIV the same day that they are diagnosed with AIDS; theyíre already symptomatic, so they were probably infected about ten years ago. And the first thing youíve got to decide as a parent, is who are you going to tell? What are you going to do? And how am I going to cope with being ill and still staying an in-charge parent in my family?
So for these Saturday workshops we only invite the parent at the beginning. Because itís not clear to us at all, although the clinical literature recommends it, doctors recommend it, social workers recommend that you tell your kids and tell them relatively soon. Itís not clear to us thatís the right decision. And in fact in many cases we would say absolutely itís not the right decision.
Norman Swan: Why?
Mary Jane Rotheram: Itís stressful. In the short term we published results several years ago that showed that the kids of parents who have recently found out that theyíre HIV positive, are more likely to act out, show behaviour problems, maybe experiment with drugs more, have more sex.
Norman Swan: When do you tell them is the right time?
Mary Jane Rotheram: Iím not going to make a blanket recommendation because in fact it varies a lot, depending on the family. What we found is some people got evicted when they tell people; in about 40% of the families it was as if there was a family secret because parents tell adolescents but they donít tell little kids, and so if you have both adolescent and little children in your family under the age of 12, youíre very unlikely to tell them. They donít know what it means, they still equate AIDS and death, and so itís like the family is living under a death sentence, a chronic death sentence as it is. So that itís very stressful on an ongoing basis, and so our intervention was geared at helping parents individually make that decision.
Norman Swan: What did you do for the adolescents?
Mary Jane Rotheram: Well in phase 2, we brought in adolescents and parents together, and in that section of the workshop, we taught parents how to maintain being the guys in charge of the family, and they learned how to say goodbye. In our phase 2, death was expected and then it didnít happen. And so you had to deal with issues about making custody plans, and we did take a firm stance on this; we thought it was good. Thereís all kinds of empirical data or research evidence that suggests that if your parents have planned and you know about who youíre going to and theyíre prepared, that in fact both sides will adjust better later, if the parent does die.
Norman Swan: And the adolescents who had this sort of help, did they do better?
Mary Jane Rotheram: What happened? Two years later the kids were less depressed, less anxious, had fewer conduct problems, were less likely to be in a psychiatric hospital than if they hadnít gone to the intervention. And parents also were less depressed, less anxious and less likely to relapse on substance abuse.
Norman Swan: Given that HIV-AIDS is such a unique situation, is there any lesson to be learnt here for parents with cancer, for example, in the non-HIV situation ?
Mary Jane Rotheram: I donít know that HIV is so unique, and I think actually itís becoming more mainstream and more similar to other diseases over time. And so I think there are many lessons. One is there are some structured activities that you can do that will make a difference. Two, that in some cases weíve advocated and doctors have pushed, for patients to take certain actions, and itís not so clear that what doctors are recommending is in fact the best strategy.
Norman Swan: Going back to telling them?
Mary Jane Rotheram: About disclosing, about your illness. Number three is that itís not that doctors donít know what to do, but that patients need to become responsible co-partners in their own care, and that was evident as well in our findings. And that when parents die, kids do OK. Theyíre not clinically depressed for the rest of their life. What we do think however, is that the impact, the negative impact of parental death, according to our data, seems to grow over time, not to decrease. So what while immediately after death actually people look really good six weeks later. And three years later, itís not in terms of depression, itís in terms of their long-range life goals that you see that adolescents are kind of decreasing their expectations.
Norman Swan: Flesh that out a bit more; whatís the window age group that youíre talking about here in terms of parental death that you see that effect of three years, and just tell me a little bit more about that effect of three years.
Mary Jane Rotheram: Well we picked up adolescents originally six years ago who were 12 to 18 years old. And so actually the older you were in that age range, the 15 to the 18 year olds, it was a more negative impact for parental death than if you were younger. And actually it was more negative on the boys than it was for the girls. And so weíre watching in early adulthood and the Federal government just funded us for the next three years, to look at how these adolescents do when they become parents, whatís the quality of their own romantic relationships, because remember they had parents who got HIV, because somebody violated their trust sexually, or as an injecting drug user in terms of sharing needles. And then how does this hit their employment goals, their career goals and their employment history, their vocational skills? So weíre looking in the three domains of intimacy, parenting yourself, your own children, and your employment.
Norman Swan: But you seemed to be making comments earlier that seem to generalise beyond that to just children or adolescents who lose a parent, rather than the HIV-AIDS, IV drug-using overlay, you know, disrupted life overlay.
Mary Jane Rotheram: Well actually right now weíre in the process of collecting data from families that have cancer, and that got cancer about the same time that our families got HIV, and we also went to the same neighbourhoods which were high rates of drug use, and weíve collected what we call a neighbourhood sample. So we can compare how the kids with HIV look with kids with cancer. But we think, and we donít have the data to support it right now, that what appears to be happening with the kids whose parents have died, might be very similar to the impact of parents with divorce. When families divorce in the United States, what happens is itís not divorce that causes really a problem for the kids, itís the drop in the family socio-economic status, that usually the mothers become poorer, the mothers get custody of the kids, and itís all those consequences of poverty and decreased financial resources. Well in the families with AIDS, the economic and stability factor in the families improves. That in fact the families have been single parent families with sometimes a parent whose had a history of substantial substance use involvement. But in these families, the new care-givers are more likely to be married, more likely to be employed, less likely to have had a history of substance use.
Norman Swan: For the new care-givers? Who are they?
Mary Jane Rotheram: They tend to be extended family members, and itís usually the most functional, the person whoís doing the best in the extended family that takes on the kids. And about 40% of the time thatís a grandparent, and the rest of the time thatís like an aunt or an uncle whoís doing well. Those family members tend to be doing better than the parent was doing, so that in fact the kids whose parents had AIDS are going into situations that are sometimes better than what they were doing before.
Norman Swan: Challenging stuff. Mary Jane Rotheram is Professor of Psychiatry at the University of California, Los Angeles.
Iím Norman Swan.
Professor Mary Jane Rotheram-Borus
Department of Psychiatry,
University of California Los Angeles
10920 Wilshire Boulevard,
Los Angeles, California 90024-6513
Professor Jack Caldwell
Director of the Health Transition Centre,
Australian National University,