Sunday, December 9, 2007

The Lord's Gift and Flying Toilets

Living With Corruption
It is 9th December 2007 and I have just watched, for the third time in two days, a CNN special program entitiled, ‘Living With Corruption’, yet another first rate documentary on Africa by the incomparable Sorious Samora. Maybe it is just because I live in Africa and have great interest in the subjects he covers of maybe it his totally unpretentious manner, but I find him one of the best documentary producers around today.

As the title suggests, ‘Living With Corruption’ takes a hard look at corruption in Africa. Some might ask, so what’s new, it’s a subject well chewed over by the media on an almost daily basis. This film gives a new slant, it looks at how corruption rules the lives of the ordinary man and woman in the street. It demonstrates all too horribly and clearly how corruption pervades every level of society, and Samora suggests the entire Continent.
This at times infuriating film depressed and angered me on a number of levels; first because it reminds me of what I have witnessed almost every day of my past six years in east Africa and second because in many ways, Samora is ‘preaching to the choir’, the people most likely to see this film will be people who already know and have an interest in the subject. These are the same people who have witnessed the issue for years and have failed singularly to do anything to change it, I count myself amongst this group.

I doubt that the USA’s domestic CNN channel will make room in its twittering vacuous 24 hour ‘news cycle’ for a program as sober as this. Not least because CNN’s Directors have long since assumed [ or indeed created] an American audience with the attention span of a humming bird, that simply could not concentrate for almost an hour.

Of the many scenes that angered me, the shots of Samora walking at night down narrow alleys of Kibera slum in Nairobi ranked pretty high. His camera pans to the streams of raw sewage and describes the plastic bags under foot as being filled with human waste. There is such a dearth of pit latrines in Kibera, (as in most urban African slums) that the people have solved the problem by shitting in plastic bags and then hurling them as far away from their own dwellings as they can. The practice is called “The Flying Toilet”.

When I lived in Nairobi some years ago, I wrote a piece in early 2003, about HIV/AIDS and public health, essentially criticising the then ‘new’ PEPFAR initiative as being too narrow in its focus. My argument then and now is that attempting to stem the tide of AIDS by offering medicines to those in need is in many ways a pointless task. Giving medicines to people whose living conditions are so appalling they cannot find clean water with which to swallow their medications and cannot find food enough to re-generate their lost body weight, seems an exercise in futility that does no more than make the donor community feel good in the short term.

I entitled that piece The Lord’s Gift and Flying Toilets. Watching Samora’s film prompte me to revisit the piece, it is depressing to see that almost five years on so little has changed for the better and most for the worst.
I have reprised the article below…………..

Medicines for the Hungry
Even if it all comes together and “the Feds” get the money and resources to do what the President has directed, I have serious doubts about the [plan’s] overall impact on the disease, at least in East Africa, because it takes too narrow an approach to the issue and offers a single templated solution. The Harvard economist Jeffrey Sachs recently commented: “…the US administration has latched on to a simplistic vision of what to do, based on a single example, Uganda. It knows little of measures in place in other parts of the world, and that each country needs to shape the best local response”.

I think he’s right. My brief sojourn into HIV/AIDS in this part of the world has taught me that there is no template: even communities abutting each other need different plans of attack. But above all else it has taught me that it is a disease of poverty and that no plan will work unless it deals directly with the underlying social causes of poverty as key objective. A Kenyan friend puts it more bluntly. “Giving medicines to the hungry that live in shacks with no heating, lighting or toilets, consume dirty water and are illiterate will not reverse the scourge.” Another commented: “No community or government can tackle disease when its people are barely surviving on $1 a day.”

This Hecate’s brew of hunger and AIDS is impacting upon Kenya in a multitude of ways. The Country has a population of about 30 million, around 80% live in rural areas and could be broadly considered as farmers. But the demographics are changing rapidly. Farmers who once grew cash crops such as cotton and peanuts cannot find enough healthy members of their family to harvest so they have turned to subsistence crops like maize. But when disease stalks the land on a biblical scale even subsistence farming fails. So the people, particularly the young move to the cities to find security and work. HIV/AIDS is accelerating the pace of urbanization in Kenya and in doing so it is creating another dimension of social problems, which in turn must shape the way HIV/AIDS is managed in those communities.

Living in a Ditch
Kenya’s capital, Nairobi, is a city of approximately 2.2 million and growing daily. Over 60% of the population lives in slums euphemistically called temporary settlements and the numbers are growing at an unstoppable rate. The most infamous is slum is called Kibera. It has the dubious distinction of being the biggest in Africa, with about three quarters of a million people occupying 226 hectares – three-square meters per person. It was most trenchantly described by the BBC’s East Africa correspondent, Andrew Harding as, “Wood fires, fried fish, excrement, and rubbish – the rich stench of 800,000 people living in a ditch…six hundred acres of mud and filth with a brown stream dribbling in the middle…and at least one third of Nairobi lives there.”

The majority of Kibera’s residents work in and around the city, in light industry and the service sector. Most live in tin-roofed shacks connected by mud tracks, which usually double as open sewers. There is an erratic electricity supply for those who can afford it. It is a dangerous place to live. Robbery and violence is commonplace. Drugs, prostitution and heavy drinking of an illegal and potent homebrew called Chang’aa are common recreational activities. The police rarely patrol; vigilantes provide security for a price and sometimes exact terrible punishments: ‘necklacing’ is not uncommon for theft

Lord’s Gift
TB and dysentery are endemic and there are frequent outbreaks of virulent infectious diseases such as meningitis and hepatitis. Rats and other vermin are constant health risk. The HIV prevalence is estimated to be 20% (5% above the national level) but I have failed to find out how this figure was determined). Public health standards would shame a refugee camp. There is little or no running water; contractors bring in most in aging water trucks with logos such as “the Lords Gift” painted down the side. It is sold at exorbitant prices and carried home every day by women and children. Only a hardened Kibera dweller would drink it without boiling. The sewage system is a combination of open sewer and pit latrine. But as numbers multiply there are not enough latrines and in desperation, people resort to the “the Flying Toilet”. In simple terms those with no access to a latrine evacuate into plastic supermarket shopping bags and hurl them as far away from their own shack as they can. The result needs no description.

Reality Check
Now: against this medieval background lets remember our clear and simple mission is to reduce the number of new HIV infections, treat a number infected with Anti Retroviral Therapy (ART) and a considerable number more for the opportunistic diseases of AIDS. In this scenario prevention through education and behavioral change is an uphill struggle. Clinical diagnosis and medication are overshadowed by the need for clean water an adequate diet. How effective will ART be when the patient drinks water laden with cryptosporidia and eats one meal of porridge a day? For those who will never receive ART and who will spend their last days in their shacks in what is euphemistically called Home Based Care, the greatest need is a clean place to lie, a caring nurse, relief from pain and a death with dignity.

This is the reality that our “Emergency Plan for Aids Relief” must deal with. It can only succeed by a broad approach, socio-economic, educational and health. Each country stricken by this plague has unique problems and each must deal with them in an individual fashion. It requires the complete involvement of the people, communities and government. Solutions cannot be designed and imposed by even the most clever, generous and wealthy outsiders. America cannot solve this problem alone and in a way of its own choosing. To have any hope of success, we must act now, the numbers are growing inexorably. It needs huge sums of money, focused, trained human resources and a ‘coalition of the willing’.

This last cliché raises another spectre. If by the time this reaches print we are at war in Iraq, then war will eclipse every other international human priority, HIV/AIDS included. Wars divert attention; wars consume resources. Will America still be able to meet its promises?

Saturday, December 1, 2007

George and the Dragon

Today is World AIDS Day 2007
I decided my contribution would be to dig up all the old pieces i have written on the subject and dump them on this 'Blogsite', if for no other reason than to enable me to track my life against the progress of the disease. I am not happy about where we are but have not yet lost hope.
Here is a piece written back in July 2003. Plus ca change.

George and the Dragon
“But overall the passage of HIV around the world has continued roughly as if we had done nothing” – Richard Feachem, Executive Director of the Global Fund. January 2003

George is a good doctor. He has been practicing internal medicine for almost 5 years, works about 60 hours a week and gets paid about $1,000 a month (his government salary doubled this year). In his free time he is studying for a Masters in Public Health. He is a man with a mission, to save his country from HIV/AIDS. It is an uphill struggle; most of his patients present with the range of opportunistic infections that signal full blown AIDS. He counsels them, tests those who consent to testing, treats what he can, keeps them in hospital until they are fit to walk (60% of the beds in the hospital are taken up by HIV/AIDS patients) counsels them again about diet, clean water and avoiding infection and sends them home. Every day a half dozen join the 700 or so who die from AIDS-related diseases in Kenya.

Today George is very angry. He has just been asked to speak to a man who attended the Voluntary Counseling and Testing (VCT) centre adjacent to the hospital. The man has received his HIV test result. After an hour of patient explanation and guidance he is intransigent, adamantly refusing to inform his sexual partners of his HIV status. In pre-test counseling he disclosed that he was married and that his wife and year-old daughter were living with her parents in Busia, Western Province. He admitted to having a “regular girlfriend” who is pregnant. Smoldering with anger, George heads back to the wards. He tells me. “Even if I could find his wife or girlfriend and get them to counseling and testing, without his consent I am breaking legal and ethical guidelines and could be out of a job. How did we get to the point whereby some foolish law prevents me from telling a household that help is needed and death is on the way?”

HIV Exceptionalism
How indeed? The answer lies in part in the genesis of HIV/AIDS as an epidemic in the USA and its perception as a “homosexual” problem. Randy Shilts in his definitive social history of the disease, ‘And the Band Played On’, exquisitely catalogues the epidemic and its management in the early years. Fear of an unknown, incurable and deadly disease combined with a set of social and moral values loosely known as “homophobia” to create a level of discrimination and stigmatization so powerful that the needs of disease management and public health were overwhelmed by social imperatives. HIV/AIDS was no longer a disease it was a political movement. Out of the turmoil rose the phenomenon of ‘gay rights’, which were designed to protect, at first those suffering from HIV/AIDS and eventually all homosexual men and women from the worst excesses of stigmatization.

A unique coalition formed between the gay community, public health practitioners and civil liberty proponents to avoid prevention measures that might “drive the epidemic underground”. The traditional tried and tested public health measures of disease notification and contact tracing used for diseases such as typhoid, TB and syphilis were abandoned, and medical confidentiality was replaced by anonymity. The new strategy, based upon voluntarism, stressed mass education, counseling and the respect for privacy. This special approach to HIV/AIDS, as opposed to other infectious diseases, dubbed “HIV Exceptionalism” became the norm in the USA. The focus on voluntarism and what had transmogrified from ‘gay rights’ to ‘human rights’, shaped the policies of the Global Program on AIDS at the World Health Organization, which in turn informed the policies of nations around the world, in particular, Sub-Saharan Africa. George’s ability to use the standard tools of disease management to deal with a pandemic which threatens to overwhelm Kenya today is constrained by the peculiar political imperatives of a nation thousands of miles away and two decades ago.

“The public policy challenge is to fight the discrimination at the same time that we fight the virus, not to assume the permanence of the discrimination, exalt it, and argue backwards from there against effective disease control” – Chandler Burr, The Atlantic Monthly June 1997
While no cure exists for HIV/AIDS, we do know enough about the virus to prevent its spread. But after almost 20 years of effort and countless millions of dollars we have signally failed to do so. Why? The more I stare at the problem the more convinced I become that the single biggest hurdle to overcome is stigmatization. It is all-pervasive. The developed world stigmatizes the developing world; Africa in particular it seems has only itself to blame for HIV/AIDS, the issue cursorily dismissed by one commentator as “over-population and over-copulation”.

Within Africa the perception of HIV/AIDS is still shaped by ignorance, misinformation, myth and superstition. Fears of becoming a social outcast deter many from seeking advice and help. Those living with the disease, though often showing little signs of illness, are shunned by their communities and discriminated in every aspect of their lives, even healthcare. Those who seek medical help frequently receive scant care because of discrimination by healthcare workers. The terminally ill, are left to the care of friends and family who rarely have the medical skills to cope and whose own fears result in stigmatization and even neglect. Above all, women are the most stigmatized, often forced into sex to survive and abandoned or brutalized when they become ill from the results.

Although human rights laws can and do protect against discrimination in employment, education and healthcare they can do little to protect against stigmatization which is far more pernicious but less easily defined and identified. In their ground-breaking article in the Lancet in 2002, De Cock et al argue that the real irony is treating HIV/AIDS differently from other infectious diseases almost certainly enhances the stigma surrounding it. Replacing the well-tested precepts of confidentiality with anonymity has created a cult of secrecy, which as the disease progresses, is impossible to maintain. Nevertheless, secrecy remains the orthodoxy despite the fact that promotes rather than breaks the destructive silence surrounding the disease and divides the known infected from the undiagnosed and uninfected. We will never beat the disease unless we get it out in the open

“People will not agree to be tested until the results provide them with more than just a death sentence’ – William J Clinton. February 2003

There is a growing body of opinion within the healthcare professions that HIV exceptionalism, whether for principal or pragmatism, has broken nearly every tenet of infectious disease control and public health management and has failed to prevent the spread of the disease and to protect society at large. Richard Feachem’s comment chillingly echoes the result. In Africa the most obvious result is a complete lack of accurate data on the disease. Most prevalence rates are obtained by complex extrapolation of data obtained anonymously from antenatal clinics designated sentinel sites. HIV/AIDS is rarely entered in death certificates and yet treatment decisions are based upon the assumption that a patient is infected. Truth to tell, we simply don’t know the size of the problem. We can only judge it by the numbers who get sick and die on a daily basis. But why should we be surprised? In the USA and Europe today it’s estimated only half of those infected by HIV are aware of it.

So what is to be done? It is hardly likely that we could return to the authoritarian practices of yesteryear (although Canada’s experience with SARS shows that even “liberal” countries set limits on human rights). Five years ago De Cock and Johnson lead the debate to re-examine current practices; they termed it “normalization.” The concept is further enlarged in the 2002 Lancet article. De Cock describes a new model expanding considerably the practice of HIV testing backed up by enhanced access to care. As Anti-Retroviral (ARV) drugs become more widely available there will be an increased need for testing and more to offer than “just a death sentence”. He discusses four contexts for HIV testing: mandatory testing, VCT for prevention; routine testing for delivery of specific healthcare interventions and diagnostic testing in individual medical care.

Mandatory testing has little utility outside specific situations such as military service. VCT is to be developed as a means of prevention by testing people who are well rather than sick; in universal know-your-status campaigns. The idea being to use VCT as a tool to reduce secrecy and stigmatization. Each test site would be linked to institutions offering care for the infected. Routine HIV testing, which differs from mandatory testing in that it implies a default policy of testing unless an individual specifically elects not to, would be become standard practice in antenatal obstetrics and the management of all sexually transmitted diseases. Finally, diagnostic testing would become routine management for those diseases currently recognized as opportunistic infections such as tuberculosis. Although this does not sound too radical it is a major departure from current practice

I would add to this concept social marketing campaigns of a scale never before attempted. Analogies between the war on disease and terrorism are hackneyed but just as terrorism can only be tackled by addressing the social issues in which breed it, the same is true of HIV/AIDS. It is much more than a simple “bug kills host” argument. Social change on the scale necessary to combat HIV is critically dependent upon an informed public with rising expectations, eventually creating demand. Most of the social marketing campaigns I have seen to date have been to say the least, amateur. I want to see the guys who sell Budweiser at the Superbowl sell HIV prevention to the world.

The Dragon
Whilst researching this article I came across a book in the AMREF library, by an old friend, the former New York City Health Commissioner and Assistant Secretary of Defense (Health Affairs) Doctor Steve Joseph. I confess that I had never read the book “Dragon Within The Gates” until now. It is a fascinating read and eerily prescient. His description of attempting to use the standard tools of public health in particular contact tracing and being thwarted by vested interest echoes down the years. But the greatest resonance came from his accounts of conservative opposition to condom distribution and the fury resulting from his halving the original estimates of HIV infections in the city, which he argued were based on shaky extrapolation of shaky data; thereby threatening research funding. Plus ca change! I have loaned the book to George.