Tales, triumphs of young people born with HIV

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A recent revelation by the Minister of State for Health, Senator Adeleke Mamora that Nigeria has the highest number of paediatric HIV cases globally has again raised doubts about the preparedness of the country to prevent new cases of HIV, especially in children by the year 2030. Dorcas Egede reports.

 

 

JOHN Williams (not real name) discovered he is HIV positive at the age of 12 after he had an accident and lost blood. The discovery was too much for his young mind to process, having lost both parents and until then, dependent on caregivers. He’s now 25 and has made stories of triumph out of his scars.

“I discovered I was HIV positive at age 12 when I didn’t even know the first thing about HIV. I had an accident and lost a lot of blood, but because we didn’t go to the hospital with a police report, I wasn’t given blood transfusion. They just treated the wound and I went home.

“Three months later, I took ill and was taken to the hospital. I was living with my cousin who was my caregiver at the time. At the hospital, some tests were conducted including HIV test and it was discovered that I was HIV positive. But my caregiver didn’t tell me anything.

“Instead, he sent me to live with my older sister. My sister took me to the hospital for confirmation test. She too had only just been informed by my cousin (caregiver) and wanted to be certain. When the test result was ready, my sister couldn’t leave work to go and collect it, so I went to the hospital myself, but the doctor refused to release it to me. I had to get another older sister of mine, before he agreed to release it.

“From the doctor refusing to hand me the result and the other drama that ensued back home, I already could tell that I was HIV positive. Curious, I took to the internet to find out what HIV really is. My discovery made me feel very depressed. There were imageries of death. It was very scary.

“I began to keep to myself more and didn’t have real friends. What I had at best were acquaintances. And it stayed that way for a long time. I couldn’t even talk to anyone about what I had just discovered, because I didn’t know how I came about the virus, since I had never had sex or anything of the sort. Those were very lonely times for me. People around me were even more confused. Soon, they began suggesting it was spiritual attack.

“I didn’t start receiving care immediately, so I became very sick. Then, Nigeria had not adopted the test and treat policy. You would have to get to a level where you’re really sick before treatment commenced. I had to wait for eight months before treatment commenced. In the mean time, I was being given immune boosters and drugs for infections.”

Typically, young Williams had trouble getting used to his meds, but the fear of dying forced him to adhere to his regimen.

“When I started treatment, I was paediatric, so I had vials of medicine that I had to drink and the smell was awful; the taste more awful. At this time, I was living with my grandparents and had little or no monitoring. I was so sick, had spots on my body, was skinny and very weak, that I missed an entire school session. The fear of death was all the push I needed to keep my hospital appointments and take my drugs as and when due.”

Asked how he coped with friends who knew his status, Williams said, “I didn’t have any friends back then and when I got to the university, I only told my roommate when we had almost graduated. He didn’t believe me because I didn’t look sick. It took showing him my drugs before he agreed.”

Asked how he has managed this past 13 years, Williams said, “It depends. The first few years were horrible for me, but in between I started getting better because there was a support group for young people that my doctor, Dr. Agatha David set up. She started the first support group ever for adolescents on June 15, 2009. I don’t forget the date because it’s very special for me. We were nine when we started, but we have expanded.

The shift

“The first day I was in the group was the first time I saw young people my age in the clinic. Coming together with young people like me who had the same reality made it easy for us to bond. I can say that was the first time I had real friends.

“Initially, I took the drugs religiously because I didn’t want to die, but when I joined the support group, I had a whole new perspective to life and the medication. I began to look at the drugs, not as something to keep me from dying, but as part of my living.

“There was this new hope that sprung up in me. I found myself looking forward to our support group meetings. The support group was named Teenage Zone, we now have two arms: one for adolescents and the other for young adults- to create a safer space for the younger ones.”

“After Dr. David pioneered her support group, other support groups started springing up, but hers has been the strongest ever. She brought about a revolution in the HIV community and every other person followed, but these are still not as vibrant as hers. I said that because others are run on funds, but hers has never been run on any funds. It’s just a group of doctors, nurses and psychologists donating money to keep the group going. They’re giving their all, but nobody is giving them the recognition and recommendation that they deserve.”

Hope vs Reality

“I’ve stopped being hopeful, but I hope that by 2035-2040, we shouldn’t have new HIV cases anymore and our government should be able to sponsor the availability of the drugs rather than rely on foreign aids.

“However, with the reality on ground, I can only hope that by 2060, there wouldn’t be new cases anymore, because the Nigerian situation as we speak is really bad. Also, the government doesn’t seem to care. Only a few state governments like Lagos are trying in this area. They forget that government support, even if it’s to the health insurance scheme, will go a long way.

“Also, there should be adequate mental support, because this will help a lot of people living with the virus. Most Nigerians are still in denial and that’s fueling the spread. Another factor is hunger and poverty; and we all know that poverty is on the increase in Nigeria.”

Advice to young people

“As long as young people keep seeing HIV as that big boundary between them and the life ahead of them, they won’t get anything out of life – because there’s more to life than living with HIV. Now, there’s a reason it’s called ‘living with HIV’ and not ‘living in HIV’. If you’re living with something, that thing cannot dictate how you live your life, but if you’re living inside something or someone, you play by their rules.

“They must continue pushing forward, because their lives are important and their dreams remain valid.”

In spite of everything, Williams remains grateful; for the many things his status has taught him and the doors it has opened for him. “I have been to more countries than I can number. Young people living with the virus should just live their lives, dream big and focus on their dreams.”

Giving back

An Electrical and Electronics Engineering graduate from Airforce Institute of Technology, Kaduna, Williams is ready to give back to society, having enjoyed a lot of support as a young person. He says, “I have started my own organisation run by young people, called David Bongre Initiative. It was named after a friend of mine who was living with HIV but died because of the way our health system treated him.

“David was born with HIV. Sadly, he took ill during his undergraduate programme at Olabisi Onabanjo University (OOU) and was taken to the hospital. On getting there, the hospital asked him if he was on any medication. He came plain and told them he was on HIV treatment. Thereafter, they just left him in one corner unattended to for two days before he was rushed to IDH. By then, he had started vomiting blood. Unfortunately for him, there was Lassa fever outbreak at that time, so he wasn’t attended to. That was what led to his death.

Founded in 2016, Williams says, “We want to use the organisation to educate people about everything, not just HIV. We will be handling social problems, and we want to do this in very creative ways. We want to use art, technology; creativity in general.”

How mother to child transmission occurs

According to Francis Umoh, Programme Manager, Positive Action for Treatment Access (PATA), “A baby can be infected in three ways: while in the womb, during delivery, and through breastfeeding.”

He however noted that if a pregnant woman is placed on ARV as soon as she takes in, this helps to reduce her viral load and the risk of transmitting the virus to her unborn child.

Olayide Akanni, Executive Director, Journalists Against AIDS (JAAIDS) also revealed that “the risk of transmission is highest in the process of delivery and after delivery, if the woman breastfeeds. That’s assuming she is not on treatment. But if the woman is on treatment, the risk of transmission is lower. That is why early detection and treatment is important, because if a woman is detected early and begins treatment immediately, the risk of transmitting to her baby is lower.

“Even when she starts treatment, she will be monitored regularly to ensure that her viral load and her CD4 dropped to the level where the virus in the blood is undetectable. Some 15 years ago, they used to say women who are HIV positive should only deliver though C-section, but WHO released new guidelines over 10 years ago, to say that the woman can deliver vaginally, as long as she’s on treatment and necessary precautions are taken.”

Why Nigeria still has the highest number of paediatric HIV cases globally

Akanni told Sunday Nation that since 2016, there have been lots of interventions by NACA to reduce the transmission of HIV from mother to child. She noted however that Nigeria still has a huge number of paediatric HIV cases “because of mothers that are not accessing PMTCT (Prevention of Mother to Child Transmission of HIV) services.”

If PMTCT services are available, accessible and free, why then are mothers not accessing it? “The entry point to preventing this mother to child transmission is for the mother to know her status. If the mother doesn’t know her status and she is positive, she would inadvertently transmit the infection to her unborn.”

He said the first thing to do after confirming that a woman is pregnant is HIV testing, which is available in every conventional healthcare facility across the nation. However, the fact remains that not all women are accessing these testing services, and Akanni said this is because “we have a lot of women who prefer going to Traditional Birth Attendants (TBAs), Faith-based Organisations (FBOs) and other places outside the recognised healthcare service providers.”

He said less women are being reached because focus of PMTCT has always been on government and private health institutions. Government policies require that every woman who is pregnant should at least have three to four antenatal clinic visits before she is delivered of her baby. But most of our women don’t even go to the clinics. And I’m saying this on the basis of a project we carried out with support from the Lagos State government between 2014 and 2015, in 7 local government areas in the state. The idea was to take PMTCT services to the TBAs, because if you realise that women are not coming to the facility and you want them to benefit from the service, the next best thing to do is take the service to them.

“It is important that as we are looking at the big picture of ensuring that more women are able to access PMTCT services, we must create an enabling environment that allows the women to access the services that we are delivering. If you’re pushing that every pregnant woman must go to a nearby health facility to access the HIV test to know her status, are we ensuring that test kits and necessary reagents are there?

“The quality of counseling and follow-up is another factor. Some women don’t want to return to the clinics where they tested positive, especially if they’re known there. This is simply to avoid stigma. Moreover, when a woman is pregnant, there are several emotions at play, and you can’t just declare to her that she is HIV positive because there is an unborn child or children at risk. It may be difficult, but we need to put in place measures to ensure that every pregnant woman receives holistic attention and access to services that prevent mother to child transmission.

Another reason Akanni cited are the mentally deranged women who mysteriously get pregnant and teenage girls who suddenly are put in the family way; as well as persons living with disabilities.

“Sometimes you get to some communities and see many pregnant young girls; are those teenage girls accessing HIV testing services? What about people with disabilities? We need to look at our services holistically. How do we ensure that those who are most marginalised are able to access the services?

Francis Umoh, Programme Manager, Postive Action for Treatment Access (PATA) blamed the trend on the health-seeking behaviour of Nigerians. “The health seeking behaviour of many Nigerians is very poor. For instance, every pregnant woman that goes to Lagos government hospital must be tested for HIV/AIDS, and if they are tested positive, they’re placed on ARV, which is free. Any infected mother on the PMTCT programme has 99% assurance of not passing the virus to her unborn child. Unfortunately, however, some pregnant women go for antenatal and when they want to deliver, they go to TBAs to deliver. TBAs do not do PMTCT programmes. This is why some babies are still being infected.

Disclosure still a challenge

Professor Oliver Ezechi, Director of Research, Nigeria Institute of Medical Research told Sunday Nation that many parents find it difficult to disclose their children’s status to them for many reasons. “In life generally, disclosure of personal information is difficult, not just for HIV. It is very difficult for an African to tell other people that he is sick, even if it’s just hypertension. Moreover, you know most children living with HIV/AIDS got it through mother to child transmission, either during pregnancy, childbirth or breastfeeding. So, the parents are already dealing with the guilt of having passed the virus to their child. That guilt further makes disclosure difficult.

“Again, you know children are pure and open; they say things without reservation; so parents also worry that if they disclose to the child that he has HIV, he can go and start spreading the news around. Also, parents are very protective. They don’t want to tell a child something that is capable of demoralising him.

While Ezechi agrees that disclosure can be very difficult for parents, he insists that it must be done to protect the child and other children around him, and most importantly, to prevent the spread of the virus. He, however, believes that “disclosure should be gradual, age specific and capacity appropriate. Parents who have difficulty with disclosure must understand that it is very important to disclose, but it has to be guided and with the supervision of a health worker who is properly trained.

Underscoring the importance of disclosure before children leave home, Ezechi said, “You need to talk to the children before they leave home because they need to take their drugs on a daily basis. It’s not safe to tell your child that the drug he is taking is a multivitamin, because when he gets to school and his friends see him taking the drugs every day, they may want to share with him.”

Owing to the crucial nature of disclosure, Ezechi said that at the institute, they “give these young people a support group. We have an adolescent clinic that is almost like a club. We try to make the place not feel like a clinic. You know HIV is a lifestyle; something you’re going to live with, which affects your daily life, social life, love life…, so the earlier you got used to living with it the better. This is what we tried to create in what we call the Teen Zone Club.

“In some of these clinics, parents are taught the importance of disclosure to children. We are also making them realise that it’s normal for their children to feel bad when they first learn that they are HIV positive because the initial thing many people, even adults do when they find out about an ailment is to be in denial. But with the counseling support we give to them, they are able to deal with it.

“This programme started in 2002 when the government of former president Obasanjo decided to roll out the free access to treatment. Children who were born at that time are now becoming adults and adolescents. What we are doing now is like a lesson we have learnt over the years. Mothers have told us about children who accidentally found out about their status, either through the internet and then confronted their parents. These are some of the things that made us come up with a standard disclosure process. Before disclosure can happen, the parents have to be ready, the child too. If a mother isn’t ready for disclosure, she cannot be forced to do it. So, you have to talk to her until she comes to terms with it.

Umoh revealed that disclosure is difficult for many parents because they worry that their children would blame and possibly hate them. “That’s why at PATA, we try to build the capacity of parents for disclosure. It’s not quite simple, but we explain to them that the earlier they disclosed their wards status to them, the better.”

Apart from building capacity of parents for disclosure, Umoh said they also have support groups for adolescents and young adults. “Before now every support group was packed together, but we now have different groups for adolescent groups, and we have also strengthened clinic-based adolescent support groups. There’s one at NIMR, LASUTH, Badagry General Hospital, Ikorodu General Hospital, Ifako-Ijaiye General Hospital, Mushin and Isolo General Hospital. What they do there is that on drug pickup day, they have HIV talks with these adolescents.”

Accidental discovery

Ezechi said that the importance of disclosure cannot be underscored. He recounted some instances where some children found out about their status by themselves and it didn’t go down well. He said when children accidentally discover their status, “they start blaming their parents and this, if not properly handled, can estrange those children from their parents. But when the parents bring those children here, we have to talk to them about the different ways by which one can contract HIV and help them understand that their parents actually care about them, they calm down.

“I remember one SS3 girl who did a search on Google and found out that the drugs she was taking were for HIV treatment and had to confront her parents. Another one went to the clinic on one of their many visits and just asked one child why they were always coming to the clinic. The child plainly told her that they were there because they are HIV positive. Another one told a neighbour that her mum always takes her to a clinic at NIMR, and the person told her that the people they treat there are HIV patients. Another child asked his mum why he’s always sick and on medication when his other siblings don’t feel the same way. The mother told him they are multivitamins and he asked why only him? Another only got to know when his parents were planning to relocate to Canada.

Ezechi said those instances could have turned out really bad but for the intervention of trained counselors at the centre. “For people who open up to us, we are able to intervene. But there are some children who become difficult to manage, stop coming to the clinic, and start having issues with their parents. But once the parents involve professional counselors, they are able to pacify them. There’s something we call disclosure preparedness, we are now beginning to prepare parents for disclosure on time, as their children are small.

What government should do

Ezechi believes everyone has a part to play in the fight against HIV/AIDS. “HIV testing centres are available in every local government and every primary healthcare centres have these testing kits. While government is doing its bit, individuals owe it to themselves to access services being provided,” he said.

Regarding those who would rather patronise Traditional Birth Attendants (TBAs) and Faith-based organisations (FBOs) to minimise cost, Ezechi said, “Those places are houses of death. People say health services are expensive, but the same people buy uniformed clothes for events almost every week, buy cell phones and data. I think it has to do with priority. We have worked with TBAs in the past, and we have taken HIV testing to some of those places, even to churches. But the most important thing is female education.”

 

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