One of the few good things the late Balaji Sadasivan implemented when Minister of State for Health, was universal ante-natal screening for HIV, allowing for early intervention. From four cases of mother-to-child transmission in 2004, it was brought down to zero in 2008 and 2009. However, two more cases popped up in 2010.
It is truly tragic for anyone to be born with an infection as serious as HIV.
One of the films at the 24th Singapore International Film Festival touches on this. Living with the Tiger (Thursday, 22 Sept 2011, 9:30 pm, Lido cinema) follows two children at Baan Gerda, a small community in Thailand that cares for about 80 children affected by HIV.
Director Mike Thomas says of his involvement in making this film:
. . . came about through an opportunistic visit to Baan Gerda, the orphanage featured in the film. I hadn’t planned on getting involved and I don’t have a background in HIV or filmmaking. I was very moved by the plight of the kids and angered that they could be abandoned by society. I first offered to help design a website and do some fundraising, and then about a year later I started filming.
It would stretch over three years. He first filmed Bruce Gaston as the latter started teaching music to the children of Baan Gerda in early 2007, but soon the idea of getting the children to perform an opera took shape. Children from other schools and organisations were invited to participate, demonstrating not only their abilities but their integration with non-infected children.
The feature-length story is principally told through the eyes of two of the children over that period, Oy, aged 13, and Bla, 16, both of whom had leading roles in the opera. Both too had been abandoned by their families.
After his parents died from Aids, Oy lived with his uncle and aunt for about 4 or 5 years. When he began to develop a skin rash the local school refused to teach him. The villagers stopped going to the family shop, fearful that they would catch the disease. Unable to care for him and ostracised by the community, the uncle and aunt sent Oy away to a hospice to die.
Bla too lost both his parents at an early age; after which the extended family rejected him. He has memories of his parents, but also of the stigma he faced after their deaths. In the film, he describes the loneliness he felt and the realisation that his uncle didn’t want him around.
However, in the course of the film, Oy and Bla each had an opportunity to be reunited with their extended families, making journeys back to their hometowns. But would they really be accepted?
So, while the film explores how music can benefit people’s lives, it is even more about issues which are important to everyone: identity, family and belonging. Along the way, it highlights the problems that HIV sufferers around the world have to deal with, and how society continues to shun those who are infected due to a lack of understanding.
Sometimes you embark on a project without really knowing what is involved.
The experience of making the film and spending so much time with the children has had a big impact on myself and the other members of the team. It’s hard to imagine a worse scenario than being born with a life-threatening disease, losing both of your parents and then being rejected by society. Their spirit and zest for life is a lesson to all of us. They deserve a better future from a society that doesn’t judge them.
* * * * *
I began by saying that Balaji did something right. But in virtually all other ways, Singapore’s efforts have been uncoordinated and largely ineffective. The number of new cases has risen every year, except for a slight dip 2010 over 2009. Many countries, less developed and with fewer resources (e.g. Cambodia, Thailand and Uganda), have managed to reverse trends dramatically, but we have not.
Our overarching strategy is hard to discern. You may think that the Ministry of Health is concerned about reducing the incidence of HIV, but what they actually do (plus the lack of results) does not convince you that that is the aim, their policies being so misdirected. Inescapably, one wonders if there is another underlying agenda. For sure, the people in charge will protest that reducing HIV is indeed their aim, but then it is also possible that they may earnestly believe so and be completely unaware of their own subconscious motivations.
It’s like this: As far as I can see, the main thrusts have been to exhort people, preacher-style, to abstain from sex, and for those in at-risk populations, to get tested.
And that’s about as far as policy programs go.
What if people do not abstain? What if people do not get tested? What about addressing the reasons why people don’t want to get tested? What if people get tested and find out that they are HIV-positive?
You may find it hard to believe, but for all practical purposes, we don’t have meaningful policies to address these questions. There is no Plan B. It’s as if the entire ministry has this huge mental block that stops them from thinking beyond “abstain” and “get tested”. Naturally, we wonder, why this mental block? If one is really interested in combatting HIV, one would pursue these issues and design effective responses. That we do not suggests, as I said above, some other agenda at work.
For example: What if people do not abstain? The solution should be obvious: Promote condom use. Yet, this is a no-no. The government refuses to promote condom use. The police has been known to actively interfere if private citizens do so on their own initiative. The Pope will be pleased.
What if people get tested and find out that they are HIV-positive? The solution should be affordable treatment. Yet, the government refuses to do anything meaningful in this regard. Singapore continues to refuse to subsidise HIV medication. All they have done is to open an access route to grants from Medifund, but there are so many conditions (one of which is that the patient’s extended family must all be penniless) and the grants are limited in duration, that this “help” is much less than it appears.
Lately, a Facebook posting by Workers’ Party member of parliament Yaw Shin Leong made the rounds. He pointed out something he recently learned:
. . . a delegate from Nepal during the conference quipped that ‘For a HIV+ patient, Singapore is one of the worst countries to live in’. Shawn explained that, the reason behind the observation is because, once diagnosed with HIV in Singapore, there would be lots of emotional & financial fear and unknowns for both the patients and society at large.
Shawn noted that the hefty price tag of patented HIV drugs and the relative limitations of using [Central Provident Fund] monies to purchase HIV drugs (usage of CPF monies for the purchase of generic drugs are not permissible). As such patients’ options will be severely limited.
He shared that if cheaper and generic HIV drugs are made available, it will certainly encourage individuals with HIV to seek earlier access to medication/ treatment (early usage). Shawn shared that according to studies this will lower the transmission of ‘viral-load’.
The last sentence doesn’t read right, with the terms a bit mixed up. Effective treatment indeed reduces the viral load in the bloodstream of an HIV-positive person to such an extent that even with sex, the transmissibility is much reduced. So not only is the HIV-positive person no threat to others in everyday situations — which he is even without effective treatment — even as a sex partner, the likelihood of transmission is much reduced, with effective treatment.
What this means is that effective treatment does not only benefit him as a patient, it benefits the entire society because transmission of the virus is interrupted. Spread is curtailed. It thus makes sense, from a public health point of view, to subsidise HIV medication. As Yaw said:
This is because suspected HIV individuals, who know about the affordability of the medications are not likely to delay the seeking of screening, treatment and medication. Hence knowing that one is infected, and on HIV medication early on, will likely and indirectly reduce the unknown transmission of the HIV virus.
And yet, the government refuses to subsidise.
See it from the person’s perspective: Getting tested and finding out that one is HIV-positive is thus the gateway to financial ruin. On top of that, there is social stigma. Here again, the government has done nothing to educate the population that there should be no discrimination against HIV-positive persons; that they are not a threat to the community.
So, is it any wonder, if testing is the shortcut to financial and social death, people would not want to test? Won’t the average person try to put off facing that Hobson’s Choice as long as possible? Exhorting people to get tested is meaningless without addressing questions of cost and discrimination.
It’s as if our government and, to be frank, many Singaporeans, insist on seeing a tiger, working ourselves up to be fearful, justifying all sorts of panicky responses, when in front of us, is a cat. The situation is manageable, yet by terrorising ourselves, making the wrong responses, we create a bigger problem.
Go watch the film. See, reflected in the mirror of Thai communities, the same unfounded fear and prejudice that is so pervasive in Singapore. But see too, through these HIV-positive children, a zest for life and a deep desire to belong and be loved.