Ilang Filipino with HIV ang kilala mo na hindi makakuha ng gamot kasi walang pambayad ng PhilHealth (How many Filipinos living with HIV do you know are unable to get their ARVs because they’re unable to pay PhilHealth)?
Ilang parents or guardians ng batang may HIV ang kilala mo na wala pambili ng diapers o gatas o pang-enrol sa school o pang-opera sa sakit ng inaalagaan nila (How many parents or guardians of children with HIV do you know who don’t have money to buy diapers or milk or to enrol a child in school or for surgery to deal with an illness of someone under their care)?
Ilang PLHIV ang kilala mong hindi makapunta sa treatment hub kasi walang pamasahe (How many PLHIVs do you know who can’t go to a treatment hub because they don’t have money for transportation)?
Ilang PLHIV ang kilala mong natulog sa kalye kasi: 1. pinalayas ng pamilya nila nang malaman na may HIV sila, 2. di na makabayad ng renta kasi nawalan ng trabaho, at 3. walang kilalang tutulong sa PLHIVs na nawalan ng tahanan (How many PLHIVs do you know who sleep on the streets because: 1. their family kicked them out when they discovered the HIV status; 2. They could no longer afford to pay rent because they lost their jobs, and 3. They don’t know anyone who could help PLHIVs who lost their homes)?
Ilang PLHIV ang kilala mo na nakapila sa PCSO, DSWD, mga opisina ng mga mayors, at iba pa para humingi ng tulong para makabili ng gamot – halimbawa, para sa cytomegalovirus/CMV retinitis – na ubod ng mahal (How many PLHIVs do you know who line up at PCSO, DSWD, mayors’ offices, or wherever to ask for help to buy medicines – for instance, for cytomegalovirus/CMV retinitis –which are extremely expensive)?
NOW…
How many HIV “advocates” do you know who:
- won’t travel unless the luggage used is Rimowa?
- boasts of ostentatious products that the regularly salaried cannot even entertain in their dreams (e.g. jewelry-studded smartwatch)?
- won’t wear non-luxury branded goods?
- tour the world on “official” capacity (#illegalmowdels daw)?
- and so on…
Oo naman (We admit), everyone has to make a living, and there’s nothing wrong with making a living.
But when you have PLHIVs who continue dying while those supposedly serving them literally roll on money, this isn’t just crass but is morally reprehensible. And it stresses that only fools will believe that “walang pera sa (there’s no money in) HIV advocacy”, because in truth, para-paraan lang sa kabig (the profiteers just collect in different ways).
Ganito yan (It’s like this), there are many ways to make a living in HIV advocacy – e.g. get salary, or get funding for a project (and so get salary from the funds).
But there are “other” ways to profit in HIV “advocacy”, e.g.:
- For those running HIV treatment hubs, profiting off PhilHealth via the ₱39,500 per PLHIV per year (by getting the money, and not rendering services);
- For those in HIV-related NGOs, extremely high salary given to “experts” and not to the beneficiaries of the HIV projects they’re handling; or
- For NGOs that are not even HIV-related but have “connections” with foreign donor agencies, kita (profit) taken by them as “middlemen”, cut from millions in dollars of funds received from funders even if they really only exist to “collate” reports on the hard work of grassroots HIV workers.
Know that with NGOs, there’s no requirement to submit SALN (Statement of Assets, Liabilities, and Net Worth, a document containing everything related to the finances or business interests of an employee). Walang (There’s no) lifestyle check. And so there’s really know way to know who’s profiting off advocacies.
This is why it can be shocking to see the big – actually, not just big, but HUGE – disconnect in HIV advocacy.
Because making a living and profiting are completely two different things.
I know, for example, this PLHIV from an informal settler family in Taguig City, who used to go to a treatment hub in Mandaluyong City. One time, he lost his job (he used to be a bus-boy in a restaurant somewhere near the Mall of Asia in Pasay City), and so he was unable to pay PhilHealth. When he visited, he was asked if he paid for that quarter. When he said he hasn’t been able to, he was given just one bottle of his ARV… and then told to return once he paid his PhilHealth. Because he was unable to pay, he just stopped taking his meds altogether when he finished that one bottle.
I know of a 16-year-old who, when he tested positive for HIV sans his parents’ knowledge, didn’t have money to: pay his PhilHealth, which will allow him to access treatment, care and support; and use to access these lifesaving services (for instance, to pay for his transportation to go to his hub in Pasig City from Las Piñas City.
I know of one HIV-positive father (the HIV-positive mother already died) of two HIV-positive children who keeps delaying their much-needed surgery for internal issues. “Until we have enough money,” he once said to me when we crossed paths, me heading to Bahaghari Center while he just came from the wet market to grab food to feed to the kids who were staying for free in a halfway house for people living with HIV.
In RITM, I have met PLHIVs who were financially supported by hard-working HIV advocates (e.g. John Jardenil comes to mind) who used their own money to make sure that the needy PLHIVs will access TCS. If you don’t give them money for their fare to go to the treatment hub, they just stop going; so these advocates do what they can to make sure the PLHIVs go to their treatment hub.
There’s more, MORE, similar stories to tell.
Pero deadma ang maraming “advocates”, so long as may kita sila (But many “advocates” ignore these, so long as they earn).
What to do?
- Continuously call out those in treatment hubs who collect your PhilHealth money, particularly if they greedily do so without rendering needed services.
- Call out NGOs that exist only for data mining (their “reports” ensure they get more funds, but won’t necessarily translate to services being developed for you).
- Call out your HIV “leaders” whose true interest is in social climbing/wealth accumulation even while claiming to speak on your behalf.
- Make donor agencies aware of how you are getting used, and that they may be funding those who just use you. If they ignore you (as they always do anyway), publicly call out those they fund (particularly those who do not even work for your good but solely exist to make money off you).
Tama na ang abuso (Enough with the abuses). Enough with the profiteering. Still too many PLHIVs are dying while a select few are getting rich/er. Enough, enough, enough.
