SA scientist helps kids with HIV, says it’s her privilege

CAPE TOWN — In the wake of her selection as one of the venerable Mail & Guardian newspaper’s Top 200 Young South Africans for 2013, and one of local Cosmopolitan magazine’s Awesome Women, neuropsychologist Dr. Daniella Mark insists that her work is “for me, me, me” — and that she is lucky to be doing it.

“I feel like I shouldn’t get recognition for something that I’m benefitting from. I feel as if I’ve won some lottery and you’re telling me how amazing I am!” she laughs.

Best of all, she sees on a daily basis the impact of what she does on others’ lives.

“I can go to my Inbox now and there’ll be an email from a clinic in Burundi saying that they’ve found 14 children who’ve been lost from care – it makes me feel happy in a way that’s hard to explain.”

Thirty-four-year-old Mark, a PhD in neuropsychology, is executive director of Pediatric Aids Treatment for Africa (PATA), an action network of 258 clinics across 24 countries in sub-Saharan Africa that promotes and facilitates improved healthcare HIV-positive children who are on anti-retroviral therapy (ART). Numbering almost 200,000, these children are a third of the global number.

“We have an incredible reach,” she says.

The annual conferences and many forums involve a lot of travel and I wonder aloud how Mark is going to cope, what with the birth of her first baby last October.

“I had a bit of practice during my pregnancy,” she begins, “when I had to stop traveling to countries with high malaria prevalence. I’m going to take Liam with me. I’ve got the most incredible husband — a doctor who’s done a lot of work for Medecins Sans Frontieres — who loves to travel and we’ll just go.”

This year, her trips will include Kenya, Nigeria, Ethiopia and Malawi, as well as Australia and the United States.

“Later this year we’ll be having a continental summit where all the teams come together. We’ll fly in speakers from the World Health Organization (WHO) and South Africa – the top speakers who would never normally be able to reach a doctor working in, say, Cameroon.”

This is not the privileged world Mark was raised in – her father is CEO of major South African fashion retailer Truworths. She attended the private Herzlia Jewish day school and enjoyed overseas holidays.

“I didn’t quite know what was actually going on in the world. There were charitable things we did growing up, but it was just fun and I don’t think I got it,” says Mark.

It was while doing an internship as part of her Master’s degree at Groote Schuur Hospital that she experienced an awakening.

“It just opened up my whole mind to understanding what was going on in terms of healthcare in this country. I just couldn’t believe that this was how we were caring for people who were ill,” she remembers.

‘HIV is a gateway to care for the poorest of our society’

“I just really, really, really wanted to do something, specifically with regard to HIV. For me HIV is a gateway to care for the poorest of our society, because it is relatively well-funded compared to other diseases.

“We’re able to access resources to target the poorest in our society with the highest rates of unemployment and the highest rates of other diseases.”

From 1992, Groote Schuur Hospital had been one of the first to provide anti-retroviral therapy for children, before the government roll-out.

“We had the largest HIV prevalence in the world, yet our government was questioning whether HIV caused AIDS,” she states indignantly, referring to the thousands of needless deaths occasioned by the policy of denialism.

“A pediatrician at the hospital managed to engage a British foundation run by a Jewish gentleman, David Altschuler, who started to fund this program for 250 families.”

By the time the South African government and other African countries caught up, the Groote Schuur team had become experts in how to provide care for children living with HIV and started a network of organizations to share their knowledge. This was the origin of PATA.

Many of PATA’s programmes are not specifically focussed on HIV, for instance, creating spaces for mothers and children to interact with each other to facilitate early childhood development. Since joining the organization in 2012, Mark has introduced several projects, among them the PATA Child-Friendly Clinic Initiative, which provides funds to create safe and friendly spaces for children in HIV care to participate in play activities and socialize.

“One of the biggest challenges is that children don’t want to come to a clinic. We have to change our perception – a child of six years old is coming on her own to get her meds and that child has an autonomy that we might not be familiar with.

“We have to make a six-year-old want to come to where we are,” she stresses earnestly. An environment that helps to reduce the fear, anxiety and distress often associated with HIV clinic visits, makes children more likely to adhere to their ART regimen, and return to the clinic for scheduled appointments.

In addition, she says, the clinic can become a place of safety. “If it becomes a place where children want to go, which it can and we’ve seen it happen, then you destigmatize HIV.”

Another passion of Mark’s is advocacy on behalf of HIV healthcare workers. “A lot of the brilliant global institutions we work closely with (such as Unicef and the WHO) are essentially experts who know the theory and what should happen and develop operating procedures and guidelines based on this knowledge, without much consultation or even a real understanding of what’s actually going on in the field,” she states.

“It’s very frustrating to see these frameworks being launched for God knows how much money and knowing that that will never actually take hold because it’s impractical. We understand what’s going on on the ground and we need to pass that information up to the funders.”

Aside from PATA, Mark and some friends started the Sisanda FunDaytion when she was engaged in research at a clinic in the black township of Gugulethu, Cape Town. She was called to counsel a little girl living with HIV who had been raped and “badly damaged.”

“There were no toys, no books, there wasn’t a chair for me to sit on,” she relates. “I basically ended up sitting with her in a broom closet underneath a desk, doing some sort of counselling.

“She really just touched me – her name was Sisanda. On that same day, one of the youth leaders asked the children what their one Christmas wish would be,” she recalls. “I heard the children say they really wanted to go to the beach.

“I thought to myself, ‘We’re 20 minutes from the beach!’ I couldn’t believe this was their greatest wish. I told my friends and we took those children to the beach.”

‘You see people doing amazing things when they have nothing’

Since then, every fortnight, underprivileged children have been taken on thousands of outings to places which would normally be beyond their reach. Mark started with three friends, but the organization now has staff, while she remains a non-executive director.

People often comment to Mark that she sees “the worst” in the course of her work. She, however, begs to differ.

“When you’re in the situation where there’s so much poverty, you can also see the best,” she believes, relating a story of a dying child who painstakingly shared out her few biscuits with a newcomer to her hospital ward. “You see people doing amazing things when they have nothing.”

“When I’m in an environment which is desperate and I see people helping each other, I see more joy, more life, more happiness, better values, than when I’m hanging out with people of my own class. I find it the most uplifting part of my existence,” says Mark.

Needless to say, Mark is deeply committed to Africa and “would never consider living elsewhere. I feel such a pull towards this place, it’s my home and there’s a certain amount of chaos on this continent that feels right for me.

“Chaos breeds innovation and there’s not a lot of red tape – you can start something, it can gain traction and you can have a huge impact — I love it here.”