World AIDS Day is passed. Let’s begin forgetting again.

This was the first World AIDS Day I chose to ignore. The first World AIDS Day that I tried to boycott.

Every year since I got into this business, December 1st has been a significant day. Now, I struggle to recall why.

In India, World AIDS day for us in Pune was about awareness and education. It was the day that the rest of world danced to the beat of our drum. Workplaces opened up to us, schools and universities invited us in, and we got an opportunity to talk about HIV, about people that live with it, and how people continue to die of AIDS in the age of antiretroviral therapy (ART). I remember feeling grateful that there was such a day, an opening, an opportunity to share our messages of prevention and support.

With every year that has passed, I have grown less grateful for the day.  Now, all I feel is disappointment at how empty the dance is, and how soon we forget about the red ribbon and the people that have had their lives changed forever.

Over and over again in Sri Lanka, those within the industry speak about how we need to reach those most at risk. The Global Fund Round 9 Grant on HIV, which has been in the news this year due to their funding of projects where men who have sex with men are educated on HIV and given the tools to prevent it (condoms and lubricants) also has funds for sex workers, people who use drugs and our ubiquitous beach boys. Globally, the focus is rightly on these communities.

If we educate sex workers (male and female) on how to stay safe, then their clients are safe. If we pass on skills the people who use drugs on how to be safe and prevent HIV, then those who share their drugs and often their beds, are also safe. It’s a common sense approach really, although we do dress it up as Public Health.

But these are sustained interventions we’re talking about, programme cycles of three and five years. Not a pinning on of red ribbons, and a rolling out of willing HIV positive speakers to share their stories of burned homes and destroyed lives so that we can feel sorry for them, and so feel better about ourselves. In fact, what has saddened me most about World AIDS Day in Sri Lanka is how we get people living with HIV to perform for us like circus monkeys.

The irony is, that people already infected with HIV, are the forgotten. In the National HIV Response, provision for people living with HIV is limited… if not tokenistic. This is not a popular perception. Free ART is often cited as our commitment to the community. This is difficult to argue against. These drugs are expensive, especially the more complicated the regimen, and I have seen enough people die because they couldn’t afford these more complex combinations in India. But is the provision of ART and STI services enough?

If we continue to treat people living with HIV primarily as patients, can we then expect them to behave like anything but a patient?

In the industry we talk of how important language is, and how empowering it is to use terms like LIVING WITH HIV as opposed to calling people patients and victims and sufferers. We talk about how ART has changed the world, and about how HIV is a chronic condition that can be managed, and how the quality of life can still be good and great and wonderful. We talk about how people living with HIV can live a NORMAL life, a productive life, a life where even children to HIV positive parents is possible!

Surely we need to move towards a more holistic approach with this community in Sri Lanka.

Let’s be frank. The doctor-patient model is not conducive to empowerment. As the People Living with HIV Stigma Index showed last year, the majority of people that access treatment are from socio-economically deprived backgrounds based in provincial and rural Sri Lanka. (The middleclass and rich with HIV either access treatment in the private sector or if they’re really paranoid of being identified, seek treatment overseas.) Doctors can resemble gods. Doctors can play God. Doctors often are God to their patients in South Asia. This dependency on the medical community in Sri Lanka has given rise to a very peculiar group of people living with HIV.  They’re afraid to say anything that might piss the doctor off. They’re afraid to ask too many questions, even about the drugs that they’re putting into their body. They’re afraid that any form of dissent will result in the non-availability of drugs and government support. So, in private they complain, but in the presence of doctors, they remain silent.

This reflection on the plight of people living with HIV in Sri Lanka, by no means intends broad brush strokes that taint all doctors. There are doctors within the government and private sectors that are loved, adored, even revered… but the question remains whether the doctor-patient model alone is sufficient to ensure a responsible and vibrant community of people living with HIV.

Perhaps the very idea of a responsible and vibrant community is abhorrent. This is Sri Lanka. People living with HIV should know their place. Perhaps some of them are to be pitied, like the children and the wives that claim they contracted it from their philandering husbands, but surely acceptance of clearly immoral behaviour is unacceptable to us as a people.

Pity and judgment is all we seem to have in this country for our HIV positive community. There are multiple programmes in place that work towards prevention. These include the titans of the corporate world that are a part of the celebrated HIV Business Coalition in Sri Lanka. But where is the commitment to care and support in this country; commitment that goes beyond the provision of ART and related services from government clinics? Do we really believe that people living with HIV can remain healthy and live productive NORMAL lives, or is that just something Magic Johnson can do?

We need to redefine HIV in Sri Lanka. Most people still think it’s a DEATH SENTENCE. Just like smokers don’t pay attention to rotting feet and lungs on a pack of Dunhill, people who want to have sex, will have sex, despite all the scorpions and spiders in the world.

Tell them the truth. You can live with it. Also include accurate and comprehensive information about transmission. Don’t just say sex and drugs. Explain! This will help reduce stigma and discrimination that stems from FEAR.

Let’s talk jobs for people living with HIV. As of 2010 we are one of the only countries in South Asia to have robust National Policies in place, including a policy for the workplace that upholds the rights of people living with HIV to continue in employment. Let’s use them!

Let’s talk about real income generation for positive networks – not candle making and basket weaving and card making that bring in a miserable pittance, but a real quality product or products, that can fund their care and support activities. If so, in future, they don’t need to go hat in hand to NGOs and companies that are part of HIV Business Coalitions come World AIDS Day and be disappointed when their tills are not placed within these institutions to collect loose change that will pay for bus fare; they travel around this country speaking to families that have discovered HIV in their midst, and also transport blood samples because some hospitals don’t have the facilities.  Yes, it’s true.

Let’s talk about the meaningful involvement of people living with HIV in the policies and decisions that govern the national response in Sri Lanka. This means that people living with HIV should be given the skills to meaningfully participate, not just make up the numbers, drink their cup of tea and nibble on butter cake.

We need commitment from all the stakeholders to make this happen. This includes above all the communities living with HIV, where much work must be done to change their approach to living with HIV from being dependents to an empowered, responsible and vibrant community.

We’re small enough in Sri Lanka to make this happen! To be an example to the rest of Asia and the world! So, let’s stop talking and make 2012 the year we get this done. Let’s start getting to Zero: Zero New Infections. Zero Discrimination. Zero AIDS Related Deaths.

  • kadphises

    Beware! Erachnophilia causes AIDS..

  • KISHAN PERERA (KI)

    Always bag your equipment. Got it!

    • http://grassrooted.net/ Hans

      KI, bag your equipment for sure, but also help bag the ignorance that results in stigma and pointless deaths.