Special Reports

What it’s like for a child to be on ARVs

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Clara* prepares to take her daily dose of drugs. She has been taking first-line ARVs since infancy. As a young girl, she did not know why she took the daily medication. She was told she has HIV this year. PHOTO BY Jordan Canary. 

By JORDAN CANARY

Posted  Monday, July 21  2014 at  01:00

In Summary

In the second part of the series, we look at what difficulties children on ARVs face. One of these is that many of them take the drugs without knowing exactly why, after all, they are too young to understand.

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She looked at her hands as she spoke—two pairs of clean-cut nails and soft unworked skin. Clara*, a shy, quiet primary-aged girl, has called her orphanage home, ever since her parents passed on a few years ago. She has short hair, and wears a simple black jacket, shorts, and flip-flops. She says people sometimes call her a tomboy, even though she does not seem to be fond of it.
The afternoon rain pattering against the roof provided a soft soundtrack to her short, honest testimony.
“When I found out, I wondered, ‘Why didn’t my mum tell me?’” she said. “When I was younger, I was taking these medicines but I wasn’t told why. I went to the clinic [after coming to the orphanage] and the counsellors asked me, ‘Did anyone tell you [your HIV status]?’ and I said no.”
She began to think of the medication she took every day without explanation. After the doctors took a blood sample, her questions were answered.
This year, Clara learned she was HIV-positive, and realised the drugs she had been taking each day were antiretrovirals (ARVs). Although she has lived with the virus her entire life, it was not until after her parents died that the counsellors at Mildmay Hospital revealed her status. She said the process involved a great deal of questions and counselling.
“[The counsellors] told me, ‘We are going to tell you—will you feel bad?’ and I said, ‘No. But if you don’t tell me what is wrong, I won’t take the medicine anymore. But if you tell me, I will take it every day.’” And so they told her. Like most HIV-positive patients, Clara underwent heavy counselling before and after testing, as well as before and after status disclosure. Dr Jacquelyn Balungi Kanywa, the manager of Medical Care at the Baylor College of Medicine Children’s Foundation Uganda, explained there are many special considerations for disclosing to children.
“We use child-friendly approaches to tell them, and it’s a process,” Balungi says. “We don’t just say, ‘You have an infection.’ We encourage the parents to tell them, ‘You have weak blood,’ or something like that so it helps prepare their mind. Then we inquire to know how much knowledge they have about HIV. Based on that, we are able to add on into the knowledge gaps.”
In 2012, there were approximately 190,000 HIV-positive children in Uganda, according to AVERT, an international HIV/Aids charity.
If taken regularly, ARVs offer many HIV patients the opportunity to live healthy, full lives. But as with any medication, mental and physical side effects are possible. Balungi explains that certain drugs can have a variety of effects on adults, including skin rashes, diarrhoea, dizziness, and nightmares.
But how differently do these same ARVs affect children? In 2013, The World Health Organisation (WHO) released a set of consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection. A few of these sections focused on proper medical dosages and counselling methods for HIV-positive children and adolescents.
Last March, WHO added a supplement to these guidelines in chapters five, seven, nine, and 11. Chapters five and seven specifically added information regarding early infant diagnosis and optimising antiretroviral therapy (ART) for children and adults.
Various physical, mental and social effects are associated with daily ARVs (see side story), but they do not daunt Clara, who dreams of going to university and becoming a pilot. As she sits in a small nurse’s office behind the privacy of a white, lace curtain, she talks about her favourite songs, even singing a few of them. Her voice is soft and lovely, as is the song she chooses to sing—she already demonstrates the ability to make an impressive alto.
Clara has gotten used to her daily drug regimen. She goes to school each day, then comes home to bathe, eat dinner, and take her medication. But she says the drugs can sometimes be bitter, and hurt her stomach without food. Unlike children in boarding schools, she doesn’t have to worry about finding privacy to take her medication at school.
She says her school teaches HIV, and does a good job of explaining it to others. When asked about facing stigma in school, Clara shrugs.
“There are 140 kids in my class, so it is impossible to know who cares whether I am positive or not,” she says. “I know of another girl in my school [who is positive], although she is not in my class. We are friends.”
One of the most challenging parts of ARV treatment is simply remembering to take it each day. For Clara, this is not difficult. She and Olivia*, another HIV positive child in her orphanage, help remind each other to adhere to their drug regimen.
“If she falls asleep, I wake her up and tell her to take it,” Clara says. “We remind each other.”
When asked about the future or other kids discovering her status, Clara remained unfazed.
“Some of them [kids in the orphanage] already know about my status, and they do not care,” she says. “I can play with them and joke with them about it.”
She is asked again about the future. With a smile, she answers, “No, I’m not scared.”

Making it easier for them
While there is not much to be done regarding physical or mental side effects (except taking the child off the drug), Dr Denis Tindyebwa of The African Network for Care of Children Affected by HIV/Aids says much can be done to remove the stigma children sometimes face. The first is to improve education within schools.
Tindyebwa says having aware, knowledgeable teachers that understand taking drugs is helpful will help the child stop being stigmatised.
“Many people think other children would stigmatise the child if they see them taking medication, but it is not true,” he says. “They can joke and play about it, but once they understand they could be taking medications just like this child from something else, they start understanding it’s not anything out of the ordinary. Most important is the involvement the adults provide.”
Despite stigma and other effects, Clara remains brave and optimistic. She is living proof for other positive children that with proper medication, life after diagnosis is possible.

*Names has been changed to protect her privacy

what to consider when treating children

When to tell them matters

The age for letting the child know they have HIV depends largely on the intelligence of the child. Most doctors recommend beginning disclosure around the age of seven, when the child begins to question why they are taking daily medication. From there, doctors, counsellors, and guardians take into consideration the mental age of the child, and whether they are mentally prepared to comprehend the information.
Although 10 is the age most doctors expect children to have been told, Tindyebwa states this age can vary.
“Telling them about HIV is a gradual process, not a one-time event,” he says. “We advise talking to them about illness when they can appreciate the difference between being sick and being well, and that they must continue taking medicine.”
Nurse Magdalene Kaggwa (pictured right) of M-Lisada Children’s Home explained that counselling children before and after testing and disclosure is a sensitive process.
“Even before testing for HIV, we do counselling,” she says. “We cannot force them to get tested, but we keep on talking to them and counselling them until [he or she] accepts. We also do counselling before revealing the results, and it is very sensitive. After children cope, they slowly get used to the situation. But you have to be very sensitive when revealing results.”
Being “sensitive” requires careful wording and patience. Doctors and counsellors must use kind, simple words the child can understand, without causing fear or confusion.
They must also be willing to take the time to slowly approach the subject, rather than bluntly state that the child has a virus.

Do not treat the child as abnormal

Mental:
Although children and adults take many of the same medications in different doses, some medicines have not yet been approved for use on children. One of these, Effaverance (EFV), is not used for children under three years due to its side effects on the brain.
But even these drugs do not have lasting effects.
“[Effects] tend to be transient—they last two to four weeks and tend to disappear,” says Tindyebwa.
In fact, ARVs can actually improve neural development and cognitive delays depending on the age and brain of the child.
“The drugs themselves hardly cause problems,” Tindyebwa says. “It is the stigma, the social interactions that the child has with others, that causes the mental problems, such as depression.”
Social:
Doctors suggest the strongest effect of daily ARVs on positive children is the social stigmas associated with treatment. Balungi explained children in boarding schools are especially sensitive because they are not provided the privacy of their own home.
“At home it’s easy because the family knows you are on HIV treatment, so it’s okay to take your pills,” she says. “But it is so difficult for them [adolescents in boarding schools] to get out their medication and take it privately. So many times they don’t take their medications.”
Dr Charles Namisi of Nsambya Home Care also states that lack of support often prevents children from taking their medication daily and regularly.
“They miss class because they have to go to the clinic, which can affect performance in class,” he says. “Parents are supposed to be supportive, but they often lack support. Instead of support, there is stigma.”
Stigma in the community can be very challenging for children and their families.
“The stigma in the community is to just stay away from the positive family,” says Balungi. “If a homestead discovers the other homestead has HIV, they tell their children, ‘Don’t interact with those children.’ And when those people come over, they ask them to leave,” Balungi says.
“Stigma is perpetuated by adults who want to know why the child is taking medicine, instead of being supportive,” Tindyebwa says. “That is what perpetrates the stigma. If the adults would just appreciate that any child suffering from any disease is well off from taking medicine, then it stops being stigmatised.”

Manage medication well

Dosing:
“Unlike the standard adult dose, dosages in children are highly dependent on a child’s body weight,” Jacquelyn Balungi Kanywa, manager of Medical Care at Baylor College of Medicine Children’s Foundation explains. She reveals a chart from the WHO, which offers dosing instructions based on children’s weight. She provides an example adopted by the Ministry of Health.
“If you’re going to give them a combination of AZT, 3TC, and Nevirapine and the baby is 3.5 – nine kilogrammes, you give them one tablet twice daily,” Balungi explains. “If you’re going to give them a different drug, you just look down the column.”
Physical:
Similar to adults, children can experience physical side effects from ARVs. However, these effects depend on the type of drug. Nevirapine is known for causing liver disease and skin reactions, while AZTs are known for causing anaemia and suppressing the bone marrow.
Dr Denis Tindyebwa of The African Network for Care of Children Affected by HIV/Aids emphasised that these side effects are just possible, not common, and appear far more in adults.
Balungi states that when doctors do notice physical changes, they immediately stop using the drug and find an alternative. She also says these side effects usually appear within the first two months of treatment, then wear off.
“HIV is more dangerous than the drugs,” she says.

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