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Living with HIV at 7 years old

Paolo (not his real name) is seven years old. He lives with HIV. But for his guardian (and others like her), the issues do not end with the child having HIV. Instead, there’s the continuing lack of services to help them look after their wards as well as they could. Outrage Magazine takes a closer look at what it’s like to be very young and HIV positive.

Ako, paglaki ko, gusto ko maging pulis (Me, when I grow up, I want to be a policeman),” seven-year-old Paolo* said, his face breaking into two halves with a huge grin. He was twisting and turning while seated on the sofa, joining my conversation with his auntie, Virginia*. Paolo then raised himself to kneel on the sofa, slowly bouncing on it while starting to play with some loose threads emanating from the cracks in the faux leather. “‘Yan talaga ang gusto ko (That’s what I really want).”

Naku (Oh my)!” his auntie, Virginia*, interjected. She had a mini-towel in her hand, which she immediately started to use to wipe the sweat forming on Paolo’s forehead. “Walang pera diyan sa pagpupulis (you won’t earn much as a policeman). Be an actor; sikat na, may pera pa (aside from being popular, you’d be wealthy).”

Paolo stopped bouncing; his brows furrowed, and his lips pursed, like he was in deep thought. Then, again beaming, he said: “Sige na nga, artista na nga lang (Oh okay, I’d be an actor).”

And then he suddenly stopped bouncing, looked over Virginia’s shoulder, like something caught his attention. And then he sped off.

Virginia sighed, the mini-towel in hand now used to tap her own forehead. Then, turning to me with a wan smile: “He’s now seven. Nalaman naming HIV-positive siya (We found out he’s HIV-positive) when he was two.”

Paolo isn’t the first child to be infected with HIV in the Philippines. And if the country’s HIV registry is to be the basis, he won’t be the last either.

TOUCHED BY HIV

Paolo calls Virginia “mama”, but his biological mother – Virginia’s younger sister Vicky* – already passed away over six years ago.

“She worked overseas,” Virginia said. “That’s where she met Paolo’s father; he’s Canadian.”

When Vicky returned to the Philippines, she was already pregnant with Paolo.

Virginia recalled how Vicky was “madalas magkasakit (frequently getting sick)” at that time. But “I suppose like many, we thought it was because maselan ang pagbubuntis niya (her pregnancy was delicate).”

But after she gave birth to Paolo, “namatay rin siya (Vicky eventually died).”

Vicky’s child Paolo was given to Virginia, the ate (elder sister).

Napansin agad naming masakitin siyang bata (We immediately noticed that he was a sickly baby),” Virginia said. “Ubo na di gumagaling (Cough that won’t heal), skin rashes na pabalik-balik (that frequently surfaced), never-ending fever…”

A medical practitioner in the hospital they frequented in the province recommended for Virginia to get Paolo tested for HIV.

Paolo’s HIV test in the province was “reactive”, so it was forwarded to San Lazaro in Manila, following the time-consuming/wasteful and somewhat antiquated approach to HIV testing in the Philippines.

Nagulat na lang ako ng may nag-text sa akin sa gobyerno sa Manila. Dalhin ko daw si Paolo sa Manila. Kung may nangyari daw sa bata, ipapakulong ako (I was just surprised getting a message from someone in the government in Manila. I was told to bring Paolo to Manila. And that if something happened to the child, I’d be sent to jail),” Virginia recalled.

That she was afraid was an understatement. “Grabeng kaba ko (I was scared/nervous),” she said. “Tinulungan ko lang ang bata tapos ipapakulong ako (I just helped the child and I’d already be sent to jail)?”

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In Manila, Paolo was enrolled in a treatment hub, and his antiretroviral medication was promptly started.

Bumuti na rin kahit papaano (He got better somehow),” Virginia said.

Looking back, Virginia said that it was really only at that point in time when “nagsimula akong matuto tungkol sa HIV (when I started learning about HIV),” she said. “Wala rin kusang nagturo sa akin; lahat, ako pa naghanap ng paraan na malaman at maintindihan (No one volunteered to teach me; everything I know, I had to find a way to learn to know and understand).”

It was also difficult, Virginia said, because “bata ‘yung may sakit. Sino bang malalapitan namin para magtanong tungkol sa mga isyu ng batang may HIV (it’s a child who was infected. Who do we approach to ask about the issues of a child with HIV)?”

HIV AND THE YOUNG

Paolo isn’t the first child to be infected with HIV in the Philippines. And if the country’s HIV registry is to be the basis, he won’t be the last either.

In April 2017, the HIV/AIDS and ART Registry of the Philippines (HARP) of the Department of Health (DOH) reported 33 adolescents aged 10-19 years who were newly infected with HIV. All were infected through sexual contact (eight male-female sex, 19 male-male sex, six sex with both males and females). Also, two children aged <10 years were reported to be HIV positive and both infected through mother-to-child transmission (MTCT).

The latter mode of transmission (i.e. MTCT) is the (antiquated) term still largely used to refer to how Paolo was infected with HIV. The usage of “vertical transmission” is, by the way, now gaining traction, since MTCT implies a mother’s premeditated HIV transmission to her child.

From January 1984 to April 2017, 1,606 (4%) of the total reported cases were 19 years old and below. Seven percent (111 out of 1,606) were children (less than 10 years old) and, among them, 108 were infected through mother-to-child transmission (MTCT), one through blood transfusion and two had no specified mode of transmission.

In April 2017, a total of six pregnant women were diagnosed with HIV; three cases were from Region 7, and one case each for Regions 3, CAR and NCR. Since 2011 (when pregnant women living with HIV started to be included in the HARP), a total of 170 pregnant cases were reported. More than half (93) were from the age group 15-24 years old and 38% (65) were from 25-34 years old age group. The regions with highest number of cases are NCR (49%), Region 7 (26%), and Region 4A (7%).

DAY-TO-DAY STRUGGLE

Virginia said that Paolo’s struggle is “day to day”; though this struggle isn’t limited to Paolo alone, but also to the one looking after him.

That is, “mabuti ngang may gamot na siya… pero marami pa ring isyu na di nasasagot, di nagagawan ng paraan (it’s good he’s already taking antiretroviral medicine… but there are still numerous unanswered/unresolved issues).”

Virginia is a mother of seven children, and “si Paolo na ang pang-walong anak ko (Paolo is now my eighth child),” she smiled. But “nawalay ako sa pamilya ko. Andito kami sa Manila. Dito nag-aaral si Paolo. Malapit sa treatment hub. Malayo naman sa pamilya ko (we got separated from my family. We’re here in Manila. Paolo goes to school here. Near the treatment hub. But far from my family).”

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Given the chance, she said, “doon sana kami kung saan may suporta kami (I’d rather be where there’s support).”

There’s also the continuing lack of knowledge on how best to deal with HIV-related issues of children.

Halimbawa (For instance),” Virginia said, “hindi niya pa alam na may HIV siya (he doesn’t know he has HIV). You also think kailan mo sasabihin… kung ikaw mismo di pa kumpleto ang pag-unawa sa HIV (when to tell him… when even you, yourself, do not completely comprehensively understand HIV).”

Virginia – who married when she was 15, and is now 42 years old – said that her youngest biological child is 13 years old; the eldest is already in his late 20s. “Ang mga matanda, alam nila ang kalagayan ni Paolo (My elder kids, they know about Paolo’s situation),” she said. “Pero iilan lang kaming nakaka-alam (But just a few of us know).”

Then – looking at Paolo, who’s playing with other kids – “ang alam niya lang, kailangan niya uminom ng gamot gabi-gabi (he just knows he has to drink his meds every night),” she said. “‘Di niya alam para saan ‘yun; basta gamot lang na kailangan niya (He doesn’t even know what they’re for; just that they’re meds that he needs).”

Perhaps, Virginia said, they’re “lucky” (“Kung masasabing ‘luck’ ito [If it can be called ‘luck’]) in the sense that “limang taon na rin siyang HIV-positive, so sanay na siya. Hindi na nga minsan sinasabihan eh; sasabihin niya mismo na iiinumin niya na lang mag-isa gamot niya (he’s been HIV-positive for five years now so he’s used to it. I don’t even have to tell him to take his meds; he sometimes tells me that he’d take his meds),” she said, a pallid smile on her face again.

Paolo, thankfully, never had adverse reactions to his meds, “kumpara sa ibang tulad niya na mas malala ang pinagdaanan (compared to other kids like him who had worse experiences),” Virginia said. “‘Yung Efavirenz lang, nahihilo siya (Just the Efavirenz, it makes him dizzy).”

In one organization for HIV-positive children and their guardians that they belong to, stories abound – from being told that “mamamatay na ‘yang batang yan (that child will already die)” by medical practitioners, to not being able to pay for medicines specific to children with HIV, to buying necessities like diapers and multivitamins.

Hector*, a father of two HIV-positive kids (whose mom already passed away), said that “hindi matapos-tapos ang problema (the problems never end).” One child, for instance, is a “hospital regular – ‘yung TB niya, pabalik-balik (her tuberculosis recurs). And then now, “kailangan niya pa-tingnan ang atay niya (her liver has to be checked).” Since Hector lost his job “sa kakabantay sa mga bata (for looking after the kids), Diyos ko, saan ako kukuha ng P4,200 na share ko para mapatingnan siya (my God, where do I get the P4,200, which is my share for her to get checked).”

Virginia’s friend Lottie*, who looks after a grandchild who is HIV-positive, was quick to lament how “kung saan-saan napupunta ang pera para sa HIV advocacy; pero kami, pang-gatas lang, wala (we don’t know where the money for HIV advocacy goes; but us, we don’t have money even to buy milk).”

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These are narratives, said Virginia, that are “normal na sa amin. Diapers nga uutangin pa (just normal for us. We even have to borrow money just to buy diapers)!”

Virginia added: “May mga kasama kami, lahat inuutangan, lahat pinapasok para lang magawan ng paraan ang pangangailangan ng batang inaalagaan namin. Mahirap… Mahirap (We have companions who borrow money, who get involved in everything just to find ways to look after the HIV-positive children we care for. It’s hard… It’s hard).”

In one organization for HIV-positive children and their guardians that they belong to, stories abound – from being told that “mamamatay na ‘yang batang yan (that child will already die)” by medical practitioners, to not being able to pay for medicines specific to children with HIV, to buying necessities like diapers and multivitamins.

As if on cue, Paolo came rushing back, a wide smile on his face.

Tanungin mo ako anong gusto ko (Ask me what I want),” he said to me.

Huwag makulit (Don’t pester him),” Virginia said to Paolo.

But he ignored her, instead continuing his chatter.

Akala ko gusto mo maging pulis (I thought you wanted to be a policeman)?”

Hindi (No),” he said, his head shaking, like an adult getting frustrated while talking with a child. “Tanungin mo ako anong gusto kong matanggap (Ask me what I wanna receive).”

So I asked him what he wanted. “Marami-rami ka bang gusto (You like lots of stuff)?”

Gusto ko ng bag. ‘Yung may gulong. Tapos ballpen. Tapos notebooks. Tapos eraser (I want a bag. With wheels. And a ballpen. And notebooks. And an eraser),” he said, beaming like a child on Christmas day.

Ang dami naman (That’s a lot),” Virginia said, all motherly again by wiping the sweat off Paolo’s forehead.

Paolo ignored her still, adding “crayons din (also crayons).”

Aanhin mo ba mga ‘yan (What will you do with them)?” I asked.

Gagamitin, siyempre (To use, of course),” he said. He started bouncing on the sofa again.

Ang daming hingi (You’re asking a lot),” Virginia repeated; but she was smiling. Then: “O, ang laki mo na, kilos bata ka pa (Hey, you’re already a big boy, yet you’re still acting like a child). Stop bouncing.”

Paolo stood up and started running away from us. Then just before joining kids his age, he turned, again with his wide smile: “Bike na rin (Also a bicycle)!”

Virginia’s wan smile returned; still paired with a deep sigh. “He’s tall for his age,” she said, seemingly more to herself than to me, “but he’s just a child.”

She then turned to me: Every day with Paolo is “an effort to make sure he won’t get hurt. Paano harapin ang stigma, ang discrimination kung nalaman ng iba ang kalagayan niya. Kung paano siguraduhing lumaki siyang masaya (How to face stigma and discrimination if other people found out about his HIV status. How to make sure he grows up happy),” she said. “Mahirap kung paano. Kaya… ewan (It’s isn’t easy. So… I don’t know).”

“He’s tall for his age,” Virginia (not her real name) said, seemingly more to herself, “but he’s just a child.”

*NAMES CHANGED FOR THE PROTECTION OF THE INTERVIEWEES

**THE RED RIBBON PROJECT (TRR), A NON-GOVERNMENT ORGANIZATION RENDERING SERVICES FOR PEOPLE LIVING WITH HIV, HAS THE ‘DUYAN’ PROJECT THAT LOOKS AT THE ISSUES SPECIFICALLY OF CHILDREN LIVING WITH HIV. AMONG THE PARTNERS OF TRR ARE THE NATIONAL COUNCIL OF CHURCHES IN THE PHILIPPINES, DOH, AND RITM.

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Living with HIV at 7 years old
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