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Going beyond testing

Encountering, yet again, a young Filipino who may be HIV positive, but who is now unaware about the next steps to take, Michael David C. Tan laments about the continuing over-emphasis on testing in the Philippines, and the lacking attention given to treatment, care and support. “If we continue over-emphasizing only the testing, then we are failing in serving by letting people suffer (or even die),” he says.

He is already in his twenties, but listening to him, he sounded just like a kid. A lost kid, in fact – his voice trembling as he shared his confusion on what steps he should now take.

Just as he narrated, this young man was apparently persuaded by a private clinic in Mandaluyong City to get tested. “Libre daw ang HIV antibody test, kaya sinubukan ko (They said the HIV antibody test is for free, so I gave it a go),” he said. The test result was “reactive” – meaning, his blood sample will now be sent to SAACL for the confirmatory test, which would determine if he is, indeed, HIV positive. He was told to hold his horses for three to four weeks, which (annoyingly) continues to be the waiting period usually given before the confirmatory result is released.

In the meantime – not helped by the stress that getting the “reactive” result brought with it – he had been getting sick.

The sources of his worries are numerous.

First, “hindi ko alam ano na ang gagawin ko (I don’t know what to do now),” he said. He said that he was not even informed about the treatment hubs – and how these hubs could serve him. Secondly, he was told that “kailangan ko raw magbayad ng P4,200 para bigyan nila ako ng baseline tests agad-agad (I need to pay them P4,200 so they can give me baseline tests immediately). I’m just a student; I don’t know where I can get that amount.” Thirdly, he didn’t know of PhilHealth’s OHAT package; he was even surprised [“May ganyan pala (There’s such a thing)?” he said] when told that of the “free” access to treatment, care and support. And fourthly, he wasn’t even informed of any sources of support for people like him – “Ni wala man lang ba grupo na puwede ko kausapin tungkol dito (Aren’t there any groups I could speak with about my plight)?” he asked.

That’s when he created accounts in gay social networking sites like PlanetRomeo.com and Grindr. To ask for information “kahit kaninong makakatulong (from anyone who could help out),” he said. “Gulong-gulo ako (I am so confused).”

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And that’s when our paths crossed.

He was particularly worried that, without P4,200, his ailments will just worsen; and something “masama (bad)” will happen to him before the three week waiting period ends.

And here is where my annoyance escalated/continues to escalate.

Because in the past months, his is not the only case we encountered that highlights the over-emphasis of HIV testing in the Philippines, while the support provided after the testing continues to be lacking.

There’s one person living with HIV who was kicked out by his adoptive aunt (his mother is overseas, and apparently does not want anything to do with him) upon knowing of his status. He slept hungry in front of a closed church in Mandaluyong until someone took pity of him.

Another person living with HIV was kicked out by his mom, also upon knowing of his status. Feverish, he slept in bus stations (he said he had to pretend to be a passenger waiting for his next trip, so the guards won’t drive him away); again until someone took pity of him.

Another person living with HIV has been taking his ARV for four years now, and yet his situation seems to continue to worsen (e.g. his CD4 count continues to decrease, instead of increase). He was told to cough up over P7,000 for genotyping to help ascertain what meds will work for him. Unemployed, he obviously does not have the amount.

There are other students who also tested HIV positive who just “disappeared”. Ask those working in the ground in Davao City in Mindanao about this, and the stories actually abound.

These are but some of the instances highlighting the lacking support given to those who test HIV-positive, of course.

I am starting to sound like a broken record by keeping on bringing this up; but since nothing seems to be changing, it has to be stated over and over and over again.

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Don’t get me wrong.

I, like most, believe in the importance of testing. After all, before anything can be done about it, one’s HIV status first has to be known – e.g. before you can start getting your ARVs, you first have to know if you’re HIV-positive. So let me say this for the record: Yes, testing is very, very important.

But the seeming over-emphasis on testing is – simply put – exasperating.

Too many NGOs/CBOs/government agencies focus ONLY on testing, with so much money spent seemingly only on it.

I know of organizations with private vehicles used to transport their staff when they test. I asked one such organization if their vehicle can be used to transport people living with HIV who do not even have money to pay for their fare to go to a treatment hub (this is particularly important in emergency cases, such as when a person living with HIV has to be rushed to a hospital because of a death-inducing opportunistic infection), and I was told dismissively: “No, it’s just for the staff.”

A politician made the news recently when he asked for additional budget for – you guessed it right – more prevention efforts (read: testing).

Bigger NGOs provide trainings (some even in fancy places outside Metro Manila, not recognizing that some of the very people they claim to serve sleep on the streets because they don’t have a cent in their names) to CBOs for them to – yet again – test more.

And we have numerous audio-visual campaigns allocated with lots of money (with the accompanying hype) to encourage people to get tested.

But beyond testing, not many other efforts exist.

If a person living with HIV is kicked out of his/her house, where does he/she go?
If a person living with HIV loses his/her job because of his/her status, are there lawyers he/she can access to uphold the anti-discriminatory principles advocated by the law (RA 8504)?
If a young person living with HIV (e.g. a student) has no money to pay for PhilHealth, where does he/she go?
If a person living with HIV is having suicidal thoughts, and mental health care is not provided by his/her treatment hub, where does he/she go?
If a HIV-negative Filipino (unknowingly) put him/herself at risk for exposure to HIV infection, where does he/she go to access post-exposure prophylaxis (PEP)?
For that matter, for those who want to access pre-exposure prophylaxis (PrEP) in the Philippines, where does one go?
Et cetera, et cetera…

I say: CONTINUE TESTING, YES; BUT GO BEYOND TESTING.

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Because if we continue over-emphasizing only the testing, then we are failing in serving by letting people suffer (or even die).

We keep saying that the number of people who get infected with HIV in the Philippines continues to increase. And so it is. But unless we better the treatment, care and support programs, we seem to care only with the numbers. Simply, WE NEED TO SERVE THOSE WHO TEST HIV POSITIVE.

As for the young man in his twenties, I have not heard from him again for a few days now.

I have given him some links to follow so he can face this stage in his life – e.g. contacts to access treatment, care and support.

But I still worry, yes.

And not hearing from him, I can only hope he is holding up well.

Better yet, I hope he finally has access to everything he needs for him to live healthy.

I hope, too, that he is not yet dead because the service providers just wanted to know his status, but do not have anything else to offer him after knowing his status. Because his demise could well be the perfect exemplification of the dire need to go beyond testing.

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