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
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.

Stigmatization
“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

Normalization
“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.