AIDS: the lost message?
Published: 01 December, 2008, 09:39
TAGS: SciTech
It is the most destructive epidemic in recorded history and December 1st is the day dedicated to raising world-wide awareness of the pandemic we know as AIDS.
Since its discovery in 1981, AIDS has claimed the lives of more than 25 million people. Over 2 Million died last year alone – including 330,000 children – and there are 33 million people worldwide currently living with the virus.
But do we as a society still fear the virus as much as when it was first discovered over 25 years ago? In the 80s there was a huge vacuum of knowledge about it; that ignorance led to fear – fear of the disease and the people that carried it. It fostered stigmatisation of those infected and led to irrational behaviour. But has that fear now abated and has indifference taken its place?
With almost 3 million new infections last year, infections of a completely preventable disease, has an entire generation lost the safe sex message or have people acquired immunity to the warnings on Acquired Immune Deficiency Syndrome? And what of the situation in Africa where AIDS is rampant – can the West shoulder any blame for the AIDS message not getting through?
Dr. Jay Levy is a Director of the Laboratory of Tumor and AIDS Virus Research in the University of California, San Francisco. Dr. Levy's group was one of the first to identify HIV in 1981. Back then he had no idea of the impact AIDS would have: “We just thought it was a disease affecting gay men in big cities, I never imagined it would become the world epidemic.”
Since then, Dr. Levy has been working on ways to control the disease.
It has been a long and at times frustrating journey and that frustration is compounded with the realisation that public concern is not what it used to be: “We've come a long way since the 1980s, we know more about this virus that any other virus in human history. We certainly know what doesn't work in terms of a vaccine and we also know what doesn't work in terms of a cure. There is definitely not the same concern for this epidemic as there was before we had treatment. Treatment has been very good – the drugs, despite toxicity, are keeping people alive for a long time but people now think it's just a chronic disease, like diabetes, that you can just take a pill and it will be OK. We are going to wake up and realise that's not true.”
It's not just the public that has misconceptions about AIDS. Sometimes Dr. Levy confronts misguided notions in his work: “I was just at a meeting when someone said to me: 'Don't tell me that this virus is infecting heterosexuals, show me the data,' I went back and showed him that 15-18 percent of new infections are heterosexuals.”
It's unsettling to think that in 2008 there are some quarters that still don't grasp the full reach of AIDS. Perhaps the fear of the disease has ebbed away over time, or maybe a case of HIV fatigue is setting in. It's fair to say that the health warnings over AIDS are not as prevalent or shocking as the ad campaigns of the early 80s.
Indeed a lot of the public health messages today concern the optimism behind contracting HIV because of the advancements in treatment. But has widespread, unrealistic optimism about HIV led to a generation of people missing the HIV prevention message? David Huebner, Assistant Professor of Psychology at the University of Utah and former faculty member at the centre for HIV preventive studies at University of California, disagrees:
“The primary problem with the emphasis on treatment optimism is that combating optimism requires pitting HIV prevention messages against the reality of improving HIV treatments. The truth is that HIV is a less deadly disease than it used to be. In the developed world, people with HIV who have access to treatments are living longer, healthier lives. HIV infection is still serious, and medication regimens have side effects and fail for some people. But if pushed, virtually any person working with HIV would admit that he or she would rather be infected with HIV today than 20 years ago. Given the state of HIV treatment, a more accurate interpretation of existing data is that people are actually more realistic than optimistic; recognizing both the real advances in treatment and the continued dangers of becoming HIV-infected.”
Even with good treatments available, Levy highlights the dangers of overreliance on them: “We can treat AIDS but you cannot think of treating people for their whole lifetimes with the kind of drugs we use because they are so toxic. It's like telling a cancer patient that they have to take chemotherapy for the rest of their lives.”
At least in 2008, as Prof. Huebner points out, there is a possibility for a lengthy life after an infection of AIDS. In the past it was a rapid killer, an efficient death sentence. Dr. Ken Doka is a Professor of Gerontology and the author of the 1996 book that dealt with a more destructive virus. His text: 'Aids, Fear and society – Challenging the Dreaded Disease' examined the deep sense of fear that AIDS evoked; stigmatizing those who suffered from the disease and causing irrational actions in its wake. However, he too agrees that in these times, perhaps we can come too far the other way. In place of a previous deep fear now lies careless detachment for a section of a whole generation.
In the USA about 37,000 people are newly infected each year with HIV.
As a primarily sexually transmitted disease AIDS is entirely preventable. Obviously a good number of people are not getting the message.
“I think some of the reasons for that is that we have lost focus and awareness. Twenty years ago you could not pick up a newspaper without reading a story about AIDS – now that's rare. In the developed world AIDS is seen as a manageable condition, the truth is that it is quite devastating. AIDS is not perceived as being as fearsome as it once was, which is a highly dangerous thing,” Dr Doka said.
Dr. Doka thinks World Aids Day is a good opportunity to re-focus attention on that truth: “In the developed world the focus should clearly be on how we continue to prevent and educate. We need to educate a population not to dread the disease but to respect it.”
But what of the developing world, where AIDS has taken an aggressive foothold on the inhabitants? Dr. Doka believes the major focus should be on effective treatment: “As long as the disease is running rampant there, we have no way of controlling it in the world.”
The aggressiveness of AIDS in the developing world cannot be ignored – 67% of all the people living with HIV are in sub-Saharan Africa. The failure in curbing the prevalence of HIV there can also not be ignored. Africa truly has an unfair share of the epidemic. Yet, how could this have happened with all the knowledge we garnered over the past three decades? Why, when there seems to be so much political will to try and solve the African AIDS crisis does it appear to have failed so drastically? Has the West misunderstood the culture of Africa and sent out the wrong message?
Helen Epstein, an independent consultant on public health in developing countries, believes the promotion of a needlessly overcomplicated view of the African epidemic has sown confusion among researchers and ordinary Africans alike. Epstein believes the culture of multiple concurrent partnerships provides a compelling resolution of the apparent paradox of Africa's high HIV infection rates.
“Although African people may not have more sexual partners than those in other countries, they are more likely to have two or three long term concurrent partners; this pattern of behaviour gives rise to an interlocking network of sexual relationships that creates a superhighway for HIV. If one person is infected, everyone is at high risk,” Epstein said.
It's a message that up until recently was lost on organisations such as UNAIDS. Until 2008, UNAIDS statistical reports on sexual behaviour did not include information on multiple sexual partnerships, let alone long term concurrency. Epstein feels it was a critical error: “The message was a long time coming and arrived too late, too late for many people.”
Where did the message get lost? According to Epstein: “My sense is that the technical agencies working on the epidemic really misunderstood it for a long time and tended to overcomplicate the underlying science. They also totally missed the importance of concurrency and sometimes downplay it in a way that seems irrational. This has been very troubling.”
The downplaying of the message to the dangers of AIDS and the factors that can cause it is important to remember on World Aids Day. So too is the work that people like Prof. Jay Levy have undertaken since the early days of HIV detection. We can only hope the future outlook is better and listening to Prof. Levy, it has the potential to be: “What can we say today? Yes, we have treatment – fabulous. Do we have a cure? No. Will we have a cure? We hope so. Do we have a vaccine? Absolutely not. Why not? Because we got to stop transmission by an infected cell. Now, is there any hope for that? Absolutely. We have people who have been exposed on many occasions to the virus; wives of haemophiliacs, for example, who have never been infected. We can study its presence in these people and if we can induce that with a vaccine we can achieve a way of prevention.”
It's a study that Prof. Levy has been working on and has funding to work on for a further three years. Is he confident of solving the natural immunity riddle? “We are after it in a variety of ways – some others have said it is impossible and walked away, that's not a word in my vocabulary.”
Let's hope that not too many more World Aids Days must pass before he, or any other, is successful.
Ciaran Walsh for RT
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