By Abiose Adelaja Adams
At about fifteen minutes after 5am on July 29 1999, Rasheed Yusuf (not real names) was born. The family cheered and clapped to welcome their very first son and grandson. However, three weeks after the birth, the mother started to pay frequent visits to the hospital as baby Rasheed suffered from one ailment after another. Today it was malaria, and then pneumonia, diarrhoea and so on. He was screened for sickle cell anaemia, but found not to be a sickler. So he was screened for HIV. Lo, he tested positive. The doctor looked at the mother, pulled a face and scribbled on the prescription note for her to also do an HIV test. She too was positive. The father, a Carpenter, was invited. He ran away. Six months later, he took severely ill and passed on, leaving his petty trader wife to fend for baby Rasheed.
Today, Rasheed is 18 years old and still does not know his HIV status. When this reporter spoke to the mom, she said, in a tremulous voice, looking over her sick son at the male ward: “My son will never forgive me. I know him; he is a very, very stubborn boy; he might even run away from the house or kill himself.”
According to her, since she knew her status, she had not failed in taking her medications and in administering it to her son. But since he turned twelve, it has been war getting him to take his medications.
“Many times, he asked me, why am I taking the medicine every day? I tell him, because of malaria. But he doesn’t like taking his drugs. And any time he doesn’t take his drugs, he will be very, very sick, so I tell him to take his drugs, every time,” she said in a convenient local parlance.
A staff at the children Hospital, located in Lagos, said they recently dealt with a similar situation; that of a boy of 15, (name withheld) who was brought into the clinic to receive his medicine, when this reporter was following on Rasheed’s case. As soon as he entered, he said, “HIV is not my portion!” He then snapped his fingers over his head, to ward away the ‘curse’. The father looked at him meaningfully and sighed. The boy was also brought to the hospital because he had stopped taking his medications and his condition had deteriorated. He could not be revived by first line drugs. Even second line drugs failed. And he died.
These are few of many lives lost because a parent continues to lie to their wards, or themselves live in denial.
Dr. Abimbola Mabogunje, the Anti-Retroviral Therapy (ART) Coordinator at the Massey Street Children’s Hospital, Nigeria’s oldest and foremost paediatric center, spoke exclusively to CITY VOICE regarding this.
“Because of several HIV interventions, a lot of children born with HIV have survived and are now becoming adolescent. However, the issue of disclosing to adolescents their HIV status is an epidemic waiting to happen; because the adolescent child is wondering why he is taking these tablets and he/she will not take it, if he doesn’t know why. And if he/she doesn’t take it, such a child will come down with diseases and so we see increased adolescent deaths in this hospital, due to HIV/AIDS.”
According to her, “Some two years ago, we had adolescents coming in with very bad state of their HIV. Their CD4 count was very low. And we lost them unfortunately. They refused to take their medications. And gone are the days where a mother will ask a child to do this and he does it. These days they will not do it unless they know why.” (CD4 is a metric that determines how high the white blood cells that play an important role in one’s immune system is. The higher the healthier).
According to the World Health Organization, adolescent is defined from age 10-19. And it is generally known that this is the age children ask a lot of questions and it is a time where their hormones are raging. Many teenagers at this point are prone to peer pressure, many experiment with sex, a lot practice being self-opinionated and rebellious.
Dr. Abieyuwa Emokpae, the medical director of the Hospital, warns that a lack of disclosure to the kids might ruin all the gains of reducing the prevalence and incidence of HIV in the country.
“If a child does not know his status, he will go about having sex without protection and in the process infect new people. It is a huge epidemic waiting to happen,” he said
In Nigeria, the HIV epidemic was at its worse in late 80s and in the 90s. But it declined from 5.8 percent in 2001 to 4.1 percent in 2010. And as of 2014, the UNAIDS statistics shows an impressive reduction in prevalence to 3.1 percent.
Increase in the number of counselling sites and the Prevention of Mother to Child Transmission (PMTCT) are cited as success stories, but all these may be ruined if parents or caregivers continue to lie to their wards or keep mute about their HIV status.
Dr. Mabogunje, who is also the Director of Clinical Services and Training at the Hospital, said full disclosure is the way forward as it has several advantages that far outweigh the disadvantages.
“When we began losing a lot of adolescents to HIV, we were concerned, and we found that it was due to lack of disclosure,’’ she said. ‘’So, we started a support group to educate mothers and support the children. We discovered that a lot of mothers don’t know how to disclose to their children in the fear that they will rebel, or they will feel bad, or they will be blamed, or some other children might go and tell their mates that they have HIV and stigmatization starts. Unfortunately, we couldn’t continue because of funding. But certainly when the support group was ongoing, they were very, very useful and the children who knew were ready to take on responsibility of their illnesses.”
On the advantages, she says, “they will take their medicines seriously, so that the virus does not multiply in their blood. Secondly, if they become sexually active they take the necessary precautions so that it doesn’t spread. Thirdly, they can also become counsellors and support other children who are just discovering their status. Those adolescent who know their status are better patients.”
At another center, the executive director of Journalists Against AIDS (JAAIDS), Ms. Olayide Akanni, confirms the danger of hiding such information from teenagers.
“Some studies have shown that the drug adherence patterns of adolescents may decline because adolescents have a sense of independence: I can do what I like and I want to explore and so on,’’ Akanni said. ‘’They will adhere better to treatment if they know why they need to take drugs daily. They may be in boarding school and will have to take their drugs unsupervised, so disclosure is important but it has to be age-appropriate to support adherence.”
Teenagers have a mind
This reporter spoke with some teenagers to understand better if they would like disclosure or denial of their HIV status.
“I won’t believe it,” says fifteen year-old Augusta Chukwu, an SS2 student of Government College, Ikorodu, Lagos. “I will really feel bad, but I will have to accept it so I don’t die.”
Sixteen year-old Folake Awe says, “I will never forgive my parents for giving me HIV. I wish I was never born.”
Chukwudumebi Richardson, a 16 year old high school leaver says, “It is better to know so that I can take charge of my health status and so that if I have any girlfriend, I will not give it to her.”
The right to know
A Child Protection expert, Mr. Taiwo Akinlami, says non-disclosure is a civil offense and a parent might be prosecuted if the consequences of denying them the information is critical, or even leads to death. “Emotional abuse, physical abuse and neglect are all types of abuses done to a child. This non- disclosure falls under “Neglect” and it flouts the right of the child to protection,” he said.
According to him, the same principle applies when a parent adopts a child and do not tell him.
“The child has a right to know once he is old enough to start interacting and asking questions,” he said.
Mrs. Adenike Eshiet, executive director of Action Health Incorporated, strongly advocates the need to inform and educate.
She said: “It is a huge health issue. More than half of all new HIV infections occur in people under the age of 25, with girls being disproportionately affected. They shouldn’t be denied of such knowledge.”
When and how do I disclose?
“As early as possible, a ten year-old can understand. Look at the intelligence of the child, so that stigmatization does not step in. And the revelation should come gradually,” Dr. Mabogunje says.
“It should be professionally done with a lot of counselling” says Ms. Betty Abah, a Child Rights Activist. “Parents should be proactive. They should know the child will ask such questions and prepare for it,” Mr. Akinlami adds.
“Like every other chronic illness such as diabetes, hypertension, you take drugs every day,” Dr. Maboguje says. “It is not a big deal. I take care of children with epilepsy and asthma. And I tell them they have to take their drugs or they will have an attack, and they comply. So, they need to know that there are other people out there like them. You don’t need to blame your parents that you are fat because fat genes runs in your family. They just have to accept it and take charge of their health.”