SA’s HIV/AIDS ‘injustice’ sparks academic’s activism

A champion of the people, an HIV/AIDS activist, an antiretroviral (ARV) treatment crusader, and a clinician with outstanding scientific prowess who remains committed to lessening the impact of HIV through passion and compassion for humanity – those were just some of the words used to describe the University of Cape Town’s (UCT) Professor Catherine Orrell. An HIV clinician, clinical pharmacologist and the clinical lead for the Desmond Tutu HIV Foundation Centre for Adherence and Therapeutics, she delivered her inaugural lecture – marking her ascent to full professor – on Thursday, 22 August.

Professor Orrell’s hybrid lecture was titled “Towards effective HIV treatment in South Africa – injustice, clinical pharmacology and adherence”. She condensed years of work into a gripping presentation that touched on South Africa’s dark HIV/AIDS denialism past, the work on the frontline to ensure people living with HIV remain ARV-treatment compliant, and shared that despite giant strides, the stigma of HIV/AIDS still exists.

“The South African HIV epidemic was ignored for many years. It was plagued by political interference and the varying cost of treatment [which was] too expensive for people in South Africa to afford for a very long time,” she said.

Delivering ARVs to Gugulethu

Orrell said her work in clinical trials started in 1998 alongside UCT’s Emeritus Professor Robin Wood, the current CEO of the Desmund Tutu HIV Foundation and the director of the Desmund Tutu HIV Centre. Her task, she said, was to find access to treatment for patients who attended HIV clinics at the Red Cross War Memorial Children’s Hospital and Groote Schuur Hospital. And she was determined.

The HIV injustice at the time had not only sparked her activism, but that of other academics, including Professor Linda-Gail Bekker, the now deputy director of the Desmund Tutu HIV Centre, who rallied and secured funding for a much-needed clinical trial.

“I went with the drugs in the boot of my car to Gugulethu three afternoons a week and we delivered the first set of ARVs to people [there].”

“I went with the drugs in the boot of my car to Gugulethu three afternoons a week and we delivered the first set of ARVs to people [there],” she said. “We got to meet Zackie Achmat and other people from the Treatment Action Campaign [an HIV/AIDS advocacy organisation]. Although it was a challenging time, it was also a very inspiring time [because] people rise to challenges, and it was a great time for me to begin my career.”

Orrell said the HIV/AIDS denialism period led to the deaths of thousands of people living with HIV who died before receiving treatment. At some point, she said, the medication needed to save their lives cost about R700 a month. Later, when the cost of one ARV drug dropped to approximately R280, people living with HIV could just about afford to pay for it with their disability grants.

“So, we were starting people on what we knew were suboptimal and potentially harmful regiments. But we were actually hoping to save their lives. And it was this injustice I think that kept me going,” she said. “Today, we still have people who don’t come for HIV treatment because they are nervous about medications’ side effects, medications that are long gone.”

Defining moment

The defining moment in her career was 2001, when the New York Times published an article quoting Republican politician Andrew Natsios, who said: “Africans do not know what western time is. You have to take these AIDS drugs a certain number of hours each day, or they don’t work. Many people in Africa have never seen a clock or a watch their entire lives. And if you say one o’ clock in the afternoon, they don’t know what you are talking about.”

Orrell was horrified and she put pen to paper and co-authored a research article that explored the adherence of patients enrolled in their clinical trial. The paper was titled “Adherence is not a barrier to successful antiretroviral therapy in South Africa”. According to this research study, patients were doing “absolutely fine” on ARVs.

Yet, South Africa continued to lag behind on testing and treatment. While other countries treated everyone living with HIV, South Africa treated just a few. After what felt like forever, the country reached universal HIV testing, and by 2016 everyone finally had access to treatment.

‘A terrible time’

Sadly, between 1996 and 2004, when Orrell first started looking after patients with HIV, all her patients died. She said often patients would arrive at an infectious disease clinic “beautifully dressed” and when clinicians asked to examine the inside of their mouths, they had deep fungal ulcers on their tongue (people living with HIV are predisposed to mouth ulcers) and recorded a CD4 count of one.

“The next time you see them, they’re in the ward, and then they’re gone.”

“The next time you see them, they’re in the ward, and then they’re gone. And it happened over and over. It was a really difficult time. People were doing everything you told them, as a doctor. But they still died and that was a really terrible feeling,” Orrell said.

She said clinicians learned many lessons during this time, such as a start–stop approach to ARVs was not a good idea. And if patients started treatment with a low CD4 count and their counts improved, it’s crucial to remain consistent with treatment. During this time, she said, clinicians also discovered that it’s safer to start patients on ARVs as early as possible.

Patients’ non-compliance

Despite the country’s HIV/AIDS denialism past it has made giant strides in the fight against the epidemic – the silver lining for Orrell and other clinicians on the frontline. But the struggle continues, especially since thousands of people living with HIV in South Africa remain non-compliant with their treatment.

“The epidemic is driven by those not in care and those struggling with daily oral medication and who are [therefore] not retained in care,” she said.

What’s needed to ensure that patients remain compliant with ARVs? Orrell suggested simplifying the treatment process. If patients struggle to visit their nearest healthcare facility to access their medication because they can’t get time off work, or they can’t afford the cost of transport, reducing their number of clinic visits should be an option.

“[The] goal is to work together with respect and kindness to achieve the best study results possible.”

And if they grapple with using their medication everyday (because they forget), introducing an alternative treatment option that would not require daily doses would be feasible too. To address the latter, she explained, granting access to long-acting ARV treatment is necessary.

But access remains restricted. And for Orrell, it feels a lot like déjà vu. She said two long-acting ARV injectables were launched in 2023 but are not available in most Southern African countries. What’s worse, she said, funding organisations don’t support its use. But Orrell is hopeful that overcoming these hurdles is possible, especially with commitment and multidisciplinary teams on board to demonstrate the efficacy and life-saving benefits.

“Nothing happens in isolation. [The] goal is to work together with respect and kindness to achieve the best study results possible, while treating our participants with dignity. And the contribution of every team member is important and of equal value,” she said.