‘This is where children get healed’

While the bitter taste of antiretrovirals may cause some young children to vomit, the lingering taste helps 11-year old Thumi* remember to take her medicine. Thumi will have to take four tablets, twice a day, for the rest of her life.

“She was very sick. She had swollen glands, chronic diarrhoea and she was very thin … Now she’s like any child; no one can notice anything and she knows her status,” says Thumi’s mother, Khetiwe Nkosi.

If Thumi doesn’t have the bitter taste in her mouth during the day, she remembers that she didn’t take her medicine in the morning, says Nkosi.

Nkosi says when she was pregnant, doctors tested her blood but didn’t tell her that she was HIV-positive and she didn’t understand what HIV was. Unlike her mother, Thumi has understood since she was eight-years-old that if she doesn’t take her medicine every day, she could die.

Thumi is one of almost 2 000 children that have passed through the doors of the Harriet Shezi Clinic at Baragwanath hospital in Soweto. Three days a week, the clinic’s maroon waiting room is packed with mothers and children waiting to see clinicians, doctors, counsellors and dieticians.

The clinic has 10 counsellors for one-on-one therapy, four nurses, six permanent doctors and four temporary doctors, making it the largest paediatric HIV/Aids clinic in South Africa.

About 14 000 children are on antiretroviral (ARV) treatment in South Africa, 10% of whom are treated by the clinic.

According to the Global Aids Alliance, there are 240 000 children living with HIV/Aids in South Africa. Tammy Meyers, founder of the clinic, says the number is probably closer to 300 000. About half of these children are in urgent need of ARVs, according to Meyers.

A doctor at the clinic, Lucy Connell, says: “We’re catching the tip of the iceberg and there are many kids out there that are going undiagnosed. We’ve got the treatment for them. They don’t need to die.”

But they do need to wait. Waiting seems to be an essential part of seeking ARV treatment. Mothers and children wait for up to three hours per visit because the clinic sees between 80 and a 100 children a day.

The waiting room and tiny passageway are more like a playground or nursery school. Kids run up and down the corridor, saying hello to everyone they pass. A three-year-old ignores his mother’s cries of “Woza!” and charges up the passage poking everyone he passes.

Some children sit in the waiting room with drips and pipes attached to their noses and with oxygen tanks for company on the seats next to them.

Peanut butter and jam sandwiches and coffee, tea and milk are served to the children and their parents.

Twelve-year-old Jabulani smiles when told he can have a sandwich after waiting for his dad to finish talking to the counsellor. He says they have been at the clinic for “a very long time”.

When asked where his mom is, Jabulani says: “Nobody’s home”.

“The clinic has such a humane environment. So many places in this hospital are impersonal and facilities are old and dirty … here we make waiting easier,” says Connell.

But waiting is better than “watching children and infants starve and waste away before your eyes” says Connell.

Nearly a decade on, the clinic is now known as a “well-child” facility, where doctors and nurses treat up to 270 children a week.

Last year the organisation received $1-million from United States President George Bush’s fund for Aids relief (Pepfar). The South African government covers the rent and provides counsellors, nurses and clinicians and supports drug and laboratory costs. The clinic also receives funding from local businesses.

The clinic, named after the first black matron at Baragwanath hospital, was established in 1997 by Meyers who was awarded an Elizabeth Glaser Paediatric Aids Foundation International Leadership Award in 2003.

In 2004, the clinic became one of the first ARV roll-out centres (where ARVs are available for free) for children in South Africa.

It took the clinic eight years to become a well-child centre. Most children who need ARV treatment are now receiving it, with the majority of the children being turned into “what they should be — playful plump kids”, says Connell.

Connell says that the clinic now, compared with pre-2004, is like “chalk and cheese”.

“Pre-2004, children would die … it would be a painful, slow and horrible death before we had widespread access. We had to turn the masses away. It’s phenomenal to go from a certain fatality scenario to a well-child clinic.”

“Children come in and you think this child will never sit and never be a normal child and then they go on ARVs and the mother will come in and say, ‘He’s saying words! He can say mommy and call his sister and the dog!’ It’s amazing … their child is coming alive and becoming a normal child,” says Connell.

Nkosi says that ARVs have made all the difference for Thumi, compared with prophylaxis (antibiotics that help prevent severe illnesses but not Aids).

“ARVs helped a lot. [Thumi’s] CD4 count went up and at first I even thought they attack Aids,” she says.

Connell says children’s bodies are more resilient because they are “less battered from life” and therefore don’t display as many side effects as adults. But it’s difficult for the children to take the medicine and adhere to a dosage timetable.

If a patient takes less than 95% of their medicine (which means missing less than three doses in a month), they are at risk of developing viral resistance.

The clinic administers the drugs in a syrup to very young children until they are old enough to swallow tablets, which vary in size.

But Connell says pharmaceutical companies are not formulating ARV drugs that are appropriate for children and that some of the drugs only come in tablet form, which some children struggle to swallow.

Children’s ARVs are also more expensive than adults’ drugs. According to the Global Aids Alliance, paediatric drug formulations can cost up to five times as much as adult formulations.

Hermien Gous, pharmacist at the clinic, says that the most expensive ARV medicine is Ziagen. It comes in a 240ml bottle, costs R260 and has to be purchased twice a month. She says other drugs cost between R70 to R80 and also have to be purchased twice a month.

Some of the drugs also taste terrible, says Connell. One of the drugs, ritonavir, taken alone or in combination with lopinavir, has a very bitter taste.

Nkosi says that some infants vomit from the taste of the medicines but after a couple of months they get used to it and the counsellors help the mothers with some tips on how to give the medicine.

Tsoanelo*, a widow and mother, says that giving her almost two-year-old son his medicine was difficult for the first few months but now it’s very easy. “I don’t know what I’ll do when he gets older. He’s going to ask me why he has to take it.”

Nadia Patrick, a counsellor at the clinic and mother of six-year-old HIV-positive Hazel, says her daughter is starting to wonder why she has to take the medicine every day. “She’s very clever. I’m going to have to tell her soon,” says Patrick.

On “clinic day” on Monday, children are told to wait outside consulting rooms while the counsellors speak to their parents. Patrick says children are too young to hear words like HIV and Aids.

She says they’re still too small to know what is actually happening to them so the counsellors tell the parents to refer to the virus as “germs” until the child is old enough to understand about HIV/Aids.

Patrick says that helping people and giving people information about HIV is the best part of her job and the hardest part of her job is when a patient starts treatment too late, or when people don’t have enough money to come to the clinic regularly.

Hazel attends the clinic every three months for a check-up because HIV-positive children on ARV treatment need regular follow-up treatment.

But it’s not only ARVs and monthly visits that will keep HIV-positive children alive. A balanced diet is imperative to maintaining a child’s health.

“There is no doubt in any nutritionist or dietician’s mind that a healthy, balanced diet is essential for a well-functioning immune system and that it should be the cornerstone of HIV/Aids treatment, in combination with antiretroviral medications.

“A well-balanced diet will slow down the progression of HIV to Aids, improve the patient’s quality of life and reduce the incidence and severity of opportunistic infections,” according to a study on alternative nutritional remedies for people living with HIV/Aids.

Carey Harman, dietician at the clinic, says that HIV causes children to lose their appetites and the virus also attacks the stomach lining. It also causes diarrhoea and vomiting and thrush.

According to Claire Egbers, a doctor who is currently researching nutrition and Aids at Baragwanath, an HIV-positive child may need up to 100% more energy-enriched meals than an HIV-negative child.

She says that adding peanut butter to food, preparing food with cooking oil, butter and eating avocado will help to keep the child’s energy levels high.

“For example to make gravy, we encourage parents to use the fat of the meat instead of a packet of gravy,” she says.

Harman also teaches parents about food hygiene. Meat should be well-cooked, vegetables and meat should be cooked and prepared separately and washing one’s hands is very important, she says.

“It’s a joke around here that one of the side effects of ARV treatment and a good balanced diet is the kids become naughty once they gain energy. They become normal children again,” she says.

According to the provincial health department, there are 28 clinics in Gauteng where people can receive ARVs.

Connell says the Harriet Shezi clinic is at the “hope” end of the spectrum and that the challenge they now face is reaching as many children as possible.

The clinic runs projects where the doctors, nurses, counsellors and data clerks mentor and support five other clinics in Johannesburg, namely Zola Community Health Centre (CHC), Hillbrow CHC, Lillian Ngoyi CHC, and Discoverers CHC.

In total, this outreach programme has assisted and supports the care of almost 3 000 children on ARV treatment.

Meyers says the Western Cape, Gauteng and KwaZulu-Natal “do well” when it comes to the treatment of HIV-infected children, but that in less well-resourced provinces, where there are no academic facilities, there is little paediatric care being provided.

Connell says that the clinic’s next mission is to build a family care centre.

The proposed centre will treat mothers, fathers and children as a family and at the same time — a one-stop family based service.

“Where there’s a [HIV]-positive child, there’s a positive mom and where there’s a positive mom, there’s likely to be a positive dad and there might be positive siblings, so you’ve got a whole family that’s affected.

“That tells you immediately that HIV is a family condition; it’s never one person … so mothers, dads and siblings that are infected can come on one visit on one day and all of them can seek care from the appropriate specialist,” explains Connell.

At present a mother spends two or three hours at the clinic with her child, then on another day attends an adult clinic for her own care. “So mom has to take two days off work and she has to pay transport twice. It just doesn’t work,” says Connell.

The family centre could cost up to R60-million.

“We’re far into the project: we’re not far into the funding,” says Meyers.

According to the Global Aids Alliance, there are 2,3-million children under the age of 15 living with HIV/Aids, and 380 000 children died from Aids in 2005. Only 4% of the approximately 1.3-million people (including adults and children) now on treatment are children.

“If you ever want to know what it’s like to be a healer or you have a vocation to be a healer, this is where children get healed.”

* Not her real name

Donations for the building of the family centre can be deposited into the Wits Foundation’s back account.

Standard Bank of South Africa

Reference: L1397