Away with ARVs; I just want to die

My name is Maria Moraa (not her real name). I am 16 and I acquired HIV at birth.

To be honest, I am tired of taking antiretroviral drugs (ARVs) for something that was not my fault.
The dizziness that comes with constant ARVs, with little to nothing to eat on most days, is overwhelming. And this is one of the reasons why I have been contemplating taking my own life for quite some time now.

I come from a family of four that has lived in Kibera since I was born. In 2020, Aids took away my mother.

I do not think my father has ever recovered. In fact, he too has stopped taking his pills, reeks of alcohol all the time, and has of late become violent.

When I was in primary school, I used to think I was normal just like any other child.  But for some reason, my parents would make me take medication all the time, even though I did not feel sick at all. It always made me wonder why.

They never told me about my condition, let alone the fact that HIV existed. It took a science lesson on HIV/Aids when I was in Standard Six for me to connect the dots.

Our teacher told us about ARVs that day and the fact that persons living with HIV have to take them for the rest of their lives.

My parents still remained hesitant to disclose what was actually ‘wrong’ with me, even after I confronted them.

Maybe it was because they did not know how or maybe because they were so focused on battling the HIV in their bodies that they totally forgot I existed. They did odd jobs so that they could secure even a cup of porridge to keep my brother and I alive.

Because they could not satisfy my curiosity, I resolved to visit the place where they got the drugs for us.

Soon after, I also discovered a safe space at Olympic in Kibera where persons living with the virus go for some sort of sensitisation and education on how to cope with the virus.

Seeing the sullen faces, especially of those the virus was rapidly eating away, put immense fear, frustration, and anger in me.

Why did God let this happen to me? What did I ever do to deserve this?

It sucks, to be honest. I just want to end it all.

It has always been my desire to be normal like other children, but I can’t. Whenever we went for a class trip, I had to hide and take my drugs, lest my friends find out my status.

It’s like you forget you have HIV until the time for medication beckons. That’s when you remember that you have this burden to deal with and it hits you that this is your only pass to staying alive.

I know I have to forge on and I have summoned all my strength.

Like any human being out there, being forgetful is part of life. Sometimes you remember to take ARVs; sometimes it totally escapes your mind, especially when you were born in the lowest income setting and you constantly have to think about food, where to get sanitary towels because you are tired of using pieces of cloth or cutting out pieces of your tired and worn beddings when your monthly period shows up.

When you go camping, you have to set an alarm to remind you to take the drugs that are keeping you alive.

You cannot bother your father, who happens to be your only living parent, because you know that he has his own demons to deal with.

Hallucinations

It’s a constant battle, apart from the fact that he is unable to even feed himself, let alone anyone else.

You get hallucinations when you take ARVs on an empty stomach. You become weak and lie down for hours, listening to crickets, struggling to breathe while the dizziness takes charge of your head and the feeling becomes unbearable.

Remember you have to come back to earth because you have school to attend and time is not on your side.

As you race so as not to upset your teachers or get punished, you ask yourself: what is the point of school when life seems to be on a clock that is determined by the pills you must take? Is the hassle worth it?

After school – which I have had to drop out of because I cannot afford it – you don’t wish to go back home. Apart from the trouble with the ARVs, dad has defaulted on rent for many months. Not that he wishes to, but as you already know, he has nothing at all.

He yells at everyone and anyone nowadays. His stress levels are over the roof and now the single-room tin-roofed house we have lived in for so long cannot hold his frustrations any longer.

I have to be silent nowadays, especially when he is having a bad day, because he will take it out on me.

These days, he is the talk of our ’hood as he has increasingly been engaging in confrontations with neighbours and his drinking ‘buddies’, who not only mock him over his status but also want him to return the money he has borrowed from them.

As you walk along the road, you can hear murmurs that are getting louder.

‘Ndio yule, ako na ukedi. Ako juu ya tembe mbaya.’ (There goes the HIV one who is on ARVs like nobody’s business).

This is why I have been thinking about death. I think it’s better to die than to suffer like this.”

Spreading hope

We find 20-year-old Zipporah Achieng arranging plastic chairs around a hall at Mugumoini Community Centre in Kibera.

She is preparing for a special session for her group.

“I hope most of them turn up. So far I have 20 members, but the truth is there are hundreds of persons living with HIV who have totally given up on taking antiretroviral drugs. We need to bring them all on board,” she says.

Ms Achieng, the mother of a one-year-old girl, is an HIV volunteer champion at the community centre. She is fighting what she calls the pandemic of HIV-positive people giving up on treatment, especially antiretroviral therapy (ARVs).

“I was born HIV-positive. So, what many persons living with this virus are going through is well known to me. It really breaks my heart that most of the people I am trying to reach out to have totally defaulted on ARVs. The number of cases is now alarming because no one seems to care. The stigma around this disease is still very high in Kibera,” she laments.

She is sad as she talks about the people who have taken their own lives “because they are tired” of ARVs, and the rising cases of mental illnesses such as depression.

There is also another problem for those struggling with chronic illness: a sense of despair and feeling used.

She cites the mushrooming non-governmental organisations (NGOs) that have invaded Kibera over the past few years, accusing them of using persons living with HIV/Aids as pawns to be used to get donor funding.

“They promise to help them get out of their misery, but when they make money, they discard them. That is why some of them opt to default on ARVs, hoping to die,” Ms Achieng says.

She explains that she has been a victim of one such organisation.

“They made a lot of money from my pain and predicament, millions from well-wishers in Europe and the US. I never got a single coin. Instead, they harmed me by exposing my status on some live show without my consent,” she says.

But she has put all that behind her and is ready to help those who are struggling to live positively.
One of her major concerns is the fact that most of the people who are giving up the battle against HIV are young people. She claims that half of the HIV-infected young persons living in Kibera are defaulting on ARVs.

“The stigma that comes with testing positive is still high. I have spoken to many who, upon testing positive, embark on a ‘revenge’ mission due to frustration. They refuse to take ARVs and go on the rampage, trying to knowingly infect as many people as possible,” Ms Achieng says.

Seventeen-year-old Mildred Wanjiru, from Lang’ata, a new mother, agrees with Ms Achieng. She tells a familiar tale of woe.

“I come from a family of five. We live in abject poverty and my journey to motherhood has not been a bed of roses. This made me default on ARVs for some time,” says Mildred. She is grateful for Ms Achieng’s group sessions, which she says keep her going.

Mildred tested positive for HIV when she was 12 and after lengthy and ineffective treatment for tuberculosis.

Although Mildred and her mother are HIV-positive, her three sisters are healthy. Her mother ensured that her younger children were fine by faithfully taking her ARVs.

Side effects

“Despite lack of food, dizziness, and the other nauseating side effects that come with being on ARVs, I think my mother religiously followed what the doctors advised, which is why my sisters are negative. She too fell off the wagon at some point but she has learnt how to manage,” she says.

Her struggle with ARVs has been a major challenge.

“It reached a point where I had totally given up on taking those drugs. You just get tired and it is emotionally draining,” says Mildred.

She remembers some of her struggles well. She once revealed her HIV status to a person she trusted and was disappointed when the confidence was breached.

“By the end of the last lesson that day, the entire school knew about it. I wanted to die because I was totally shunned, like some sort of outcast,” says Mildred.

But she was determined to complete her secondary school education, ending up with a C- grade in the  Kenya Certificate of Secondary Education examinations.

Her struggles and suffering continued, sending her into depression. This was until a guardian angel in the form of Ms Achieng came to her life.

“Zipporah picked me up. I felt lost and suicidal thoughts filled my head. She told me she had lived through similar moments of despair. She is now teaching me to fight,” Ms Wanjiru said.

Ms Achieng is helping Mildred and 20 other boys and girls who are living with HIV/Aids and are struggling with their daily dose of ARVs.

She often worries that she is not trained or equipped to deal with the range of problems that ARV defaulters struggle with, such as mental health issues.

“I am not an expert in handling suicide cases, though I have done some certification courses in HIV prevention and mental health. Some of the issues persons living with HIV deal with are complex,” says Ms Achieng.

She longs for an opportunity to equip herself with the necessary skills to help more people.

Eighteen-year-old Sylvester Wainaina, who hails from Kiambu County, finds the ARV routine annoying.
“When my friends invite me to a house party, I cannot drink whatever alcohol we buy. That’s the moment I remember I am not normal like other people my age because I was born with HIV,” says Sylvester.

He says most of his friends don’t know his HIV status. He hides his pills and takes them secretly, always terrified that his friends will find out and abandon him.

“It is how society perceives persons living with this virus. It makes you want to give up and die. It is not my fault that I was born with this predicament. I am in constant fear of being ridiculed,” Sylvester says.

Defaulting on ARVS is a problem that the country is grappling with, especially among young people, according to Dr Ruth Laibon-Masha, the National Syndemic Diseases Control Council’s CEO.

“We haven’t made the data public yet, though this is a major nationwide issue based on our findings so far. Despite the fact that as a country we are doing very well on viral load suppression, there are very many young people who have what they call ‘drug holidays’, whereby they just stop taking ARVs,” she says.

Data from the National Syndemic Diseases Control Council (NSDCC) shows that between January andAugust this year,  some 63,711 Kenyans had defaulted on antiretroviral therapy.  Nairobi has the highest number of defaulters at 9,688 followed by Migori at 5,410.

HIV response has shrunk because of the disruption and effects brought about by the Covid-19 pandemic.

“Kenya transitioned to a lower middle-income country, raising the expectation on counterpart financing and narrowing interest rates. HIV contributes to 29 percent of the country’s mortality and therefore while the global resource envelope for HIV response shrinks, an increase in domestic resources will be imperative to bridge the gaps and sustain more than 1.5 million Kenyans on lifelong treatment,” the latest policy document says.

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