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Best practices be damned

Michael David C. Tan notes how – while best practices abound in the Philippines to respond to HIV – many continue to not widely apply these. “Because stupidly, we seem to prefer bad practices over best practices, to the detriment of the people,” he says. “You want to realize the #zeroHIVPH hashtag to become a reality? Then start with widely implementing what actually works. Stop being so gung ho about stupid practices that – let’s be completely honest – prove disadvantageous to PLHIVs/do not work to the best interest of the Filipino people.”

“We’ve had students who tested HIV-positive, but who we eventually lost contact with,” Nathan* said in his vernacular. This is, supposedly, because in Davao City, where he is based (and where he helps out in providing HIV antibody tests), after testing, if one wants to get access to antiretroviral medicine (ARV), he/she has to first pay for baseline tests (including, but is not limited to, ascertaining the CD4 count, chest X-ray, et cetera). And so, “wala gani sila pamiliti muadto sa treatment hub, mag-expect pa ta ug kuwarta aron sa tests (they can’t even pay their fare to visit the treatment hub, so how can we expect them to have money for the tests)?”

This is a tricky situation for Filipino people living with HIV (PLHIVs). Often, even HIV advocates/leaders will say that ARV is free in the Philippines – and in a way it is, thanks to the Global Fund and to the PLHIVs’ PhilHealth contribution. But what is not mentioned is that before a PLHIV can access the “free” ARV, he/she first has to get the baseline tests – and these tests are NOT FREE.

“So, what happens to them, then?” I asked.

Nangamatay na lang tingali (Maybe they died already),” Nathan said. “Or, they eventually just die.”

“That’s sad.”

“Sad giyud. Pero ana giyud na; gidawat na lang namo (It’s really sad. But that’s how it is; we’ve learned to accept it as ‘normal’).”

And this is what gets to me – this accepting as “normal” practices we all should be amending, particularly since, in the Philippines, there actually exist best practices that are not widely applied because – in our dealings with service providers in the Philippines – systems are often dictated not so much by what actually works, but by the personality of who is in the top post.

At times this is good, particularly when the bosses know what they’re doing, and actually have the people’s welfare in mind. But most times this fails because: 1) bosses can be shitty; and 2) even good bosses don’t stay in their posts forever, so that if no good system is in place, a bad boss can just implement practices that are contrary to what the good boss did as soon as the latter leaves and the former takes over.

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In dealing with HIV in the Philippines, there are some practices worth mentioning, thereby highlighting.

1. Baseline tests can actually be provided for free – at least one treatment hub provides these tests for free because, in not so many words, it is possible/it can be done. But even if this actually makes more PLHIVs access the much-needed treatment, it is now widely offered.  Instead, PLHIVs are being asked to pay up.  And so, as in the case in Davao City, asking people to cough up more money for the baseline tests is ending up making people not get the much-needed “free” treatment.

“Can’t they ask their parents for money?” I (admittedly stupidly) asked Nathan.

Gi-atay! Wala gani sila pang-tuition, pang-medical tests pa kaha? Nagpa-test lang sila kay ni-adto mi sa ilaha. Pero hangtud dira lang amo-a service giyud; testing lang giyud (What the hell! Their parents don’t even have money to pay for these students’ tuition fees, how much more if we ask them money for medical care? These students only got tested for HIV because we went to where they were. But the services we offer stop there; we just test them).”

Not incidentally, many of the new cases of HIV infection in the Philippines are young people who still depend on others for their daily expenses. And so – with the non-use of the best practice of providing baseline tests for free – it’s like we’re just cruelly telling them: “You’re HIV positive and… good luck with that!”

2. ARV supplies can be given for longer periods of time. One hub, for instance, used to give ARV supplies for 3 ½ months. And so, this hub only saw the “older” PLHIVs as needed – that is, every three months; or if they have medical emergencies. It was, therefore, able to focus on “newer” PLHIVs.

But the more common practice (for the other treatment hubs) is to give the PLHIVs supplies for only two weeks – meaning, they are forced to return to their treatment hubs every week to refill/get more supplies.

“This ensures compliance – that they really take their meds,” one staff, Remy*, from a Makati City-based international donor agency once told me.

And this is, in a way, understandable. Monitoring is, after all, good and well.

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But this is not taking into consideration the fact that many Filipino PLHIVs do not live near the treatment hubs in metropolitan areas. Many, yet again as mentioned earlier, do not even have money for transportation fare.

The provision of supplies has been cut for everyone lately – no thanks to the ARV shortage that the Department of Health (DOH) continues to deny is a problem. And with this, what we have is the dominance of a bad practice…

Surprisingly, I have met HIV “advocates” who actually told me there’s no ARV shortage in the Philippines “because that’s what the DOH told us.” Without checking what’s really happening at the grassroots, they just believe what is being fed them by people as detached as them from the real situation.

On a related note, healthcare providers often complain of the number of PLHIVs they have to serve daily because now, they don’t only deal with new cases, but also old cases who are there just to collect ARV supplies.

Also on a related note, PLHIVs outside Metro Manila told me about the times they had to “borrow” ARVs from each other because the supplies did not arrive, and they – of course – did not want to miss taking their medications. But if the stocks did not arrive in time before the “loaned” ARVs are replaced, then all of them – the one who lent, and the one who borrowed – end up not taking their medications.

“That’s the issue of the LGU (local government unit), relating to procurement,” this so-called HIV advocate* said to me somewhat dismissively, always busy with her international trips, at times to speak on the “real” HIV situation in the Philippines in various gatherings.

“The DOH can’t do anything about this? Any HIV-focused government or non-government body can’t do anything about this? Just to ensure this doesn’t happen anymore!”

Her answer, succinctly summed: “PLHIVs should come out for them to be heard. That’s their issue; they should openly talk about it.”

When the people representing the community do not even seem to care about the real members of the community (and their issues, including stigmatization, discrimination upon disclosure, et cetera), we know there’s a problem. And when the same people are the only ones being listened to by those in positions of power (e.g. the government, donor agencies, et cetera), then we know the community involved is double F-ed.

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3. There was a time when PLHIVs used to take numerous pills per day; and supposedly, those days are gone, with PLHIVs now having the option of taking only one pill per day. This cuts the so-called “pill burden”. As noted: “three-in-one pills simplify treatment, cutting down the number of tablets that a person has to take daily. They also allow patients to take their medication more discreetly. They improve treatment adherence.”

In the Philippines, three-in-one pills were recently introduced. But the supplies seem to have run out again, with PLHIVs who were shifted from three pills a day to three-in-one pills, again shifted to three pills per day/two pills per day.

“Why? is the obvious question to ask a service provider.

Walang supply (There’s no supply),” a nurse in one hub told me. “Asa na lang tayo na magkaroon pa ng supply ng three-in-one pill (We just hope that we’ll still have supplies of three-in-one pills).”

And so what can help Filipino PLHIVs is not practiced because of unapt procurement of ARV supplies.

4. Financial support can be given to those who have a hard time accessing existing services (i.e. “enabler fund”). Because many PLHIVs are not based near treatment hubs, and because many PLHIVs are not exactly well-off, many end up not accessing the existing services. What many do not know is that some form of support can actually be accessed by these people to ensure that they are given the care they need. Sans knowledge of this support mechanism, they end up just not accessing the services.

Pasha*, a friend from southern Philippines, died without accessing ARVs. Unemployed in Cotabato City, he could not even afford to go to Davao City, where the treatment hub in that part of Mindanao is located. But Pasha is not the only case we know.

5. Give as much emphasis on treatment, care and support (TCS). Currently, there is over-emphasis on testing, testing, testing… And yet, once people knew of their HIV-positive status, the steps that can be done then are not widely known.

Many of those who test HIV positive still don’t what they can do to make sure that they can access the existing services. One friend, Sharif*, once told me: “Para akong tanga, pumunta lang ako sa hub, at lahat kami na andoon nagtitinginan lang, naghihintayan kung ano nga ba ang gagawin namin next (I looked stupid, I just went to a hub, and all of us who were there just looked at each other, as if waiting for someone to tell us what to do next).”

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Those who claim discrimination (from work or school or wherever) because of their PLHIV status still do not know where they can seek redress. Another friend, Jon*, was forced by a doctor to get tested for HIV, even if he repeatedly said “no”. “If you don’t get tested, your HMO won’t cover you hospital bills,” this doctor said. She was blind to the fact that: A) if he tested positive, his HMO won’t cover his hospital bills anyway; and B) the law mandates pre- and post-test counseling before testing, which her hospital did not provide.

PLHIVs still get kicked out of their homes when (even their own) family members know of their HIV status. One PLHIV, Rick*, told of how he had to stay “in front of this closed Roman Catholic church somewhere in Mandaluyong City for the entire day – I didn’t know where to go, who to call… I was crying, and hungry, and felt so alone…”

Because, yes, getting people tested is important – the first step to deal with this is, after all, in knowing. But services should not stop there. As we always say, this is more than a number game, as if we should only take action when the numbers are already too high. People’s lives are at stake here.

Call this a rant.
Or maybe making a mountain out of a molehill.
Or simple expression of discontent.
Call this what you will… I honestly don’t care.

Because in the end, this has to be heard: While Western countries keep saying no one should die from AIDS-related illnesses at this time and age because treatment is now readily available (and again, for “free” in the Philippines), in truth, we still constantly hear of Filipinos whose lives were cut short by this social problem. In fact, we continue getting shamed with the fact that the Philippines remains as one of only a handful of countries that continue to see an increase in the number of people getting infected with HIV.

Because something can be done about this, yet we seem to choose not to do them.

Because stupidly, we seem to prefer bad practices over best practices, to the detriment of the people.

When – in the delivery of service – we make mistakes as we find our way in ascertaining what will work best, we say that this is “learning from experience”.
But if we already have practices we know work, yet we choose NOT to use them, that’s called stupidity.

You want to realize the #zeroHIVPH hashtag to become a reality?

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Then start with widely implementing what actually works.

Stop being so gung ho about stupid practices that – let’s be completely honest – prove disadvantageous to PLHIVs/do not work to the best interest of the Filipino people.

This is the only way we really will get somewhere.

*NAMES CHANGED FOR ANONYMITY

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