Losing patients

Within just over a decade, South Africa’s handling of its HIV crisis has seen the country transformed from an international pariah to a leader. Once known for denying HIV treatment to its citizens, the country now boasts the largest treatment programme in the world: over two million South Africans, it is claimed, are on anti-retroviral therapy (ART). This dramatic total is impressive. It is also not accurate.

According to Dr Leigh Johnson, an epidemiologist at the University of Cape Town’s Centre for Infectious Disease Epidemiology and Research, South Africa’s national figures reflect the total number of people who have ever been initiated on treatment, but very importantly not those currently in care.

Providing a more precise estimate of how many people are on ART is difficult. The quality of data is often poor, and monitoring and evaluation systems are compromised by human errors and outdated methods of collation. Much of the information the country gathers is still done using paper-based systems.

Furthermore, the country’s population is highly migratory and people move regularly between towns and between health centres. The health system is poorly integrated so keeping track of people is challenging. Miscounting is inevitable. South Africa may know the approximate number of all South Africans who have ever been placed on treatment, but it is much less certain how many are still taking their ARV drugs. Even less certain is how many people have been tested for HIV, but have never returned to receive treatment.

According to Richard Lessells, a researcher with the Africa Centre for Health and Population Studies at the University of KwaZulu-Natal and the London School of Hygiene and Tropical Medicine, losing people from the system “is undoubtedly one of the biggest challenges … If we’re serious about trying to reduce [the] transmission of HIV, then long-term retention is more and more important.”

Lessells has studied retention in care. His findings, and those of other researchers, point to worrying trends. For example, a systematic review of African studies of retention in care, published in PLOS Medicine in 2011, found that only one-fifth to one-third of HIV patients remained continuously in care from the time they were tested to the time they were placed on long-term ARV treatment.

Professor Francois Venter, Deputy Executive Director at the University of the Witwatersrand’s Reproductive Health & HIV Institute, estimates that at every stage of HIV care– from the initial HIV test, to receiving follow-up CD4 results, to being placed on treatment – a staggering 50% of patients are lost. Studies show that patients are more likely to fall out of the system between the time they are tested for HIV and the time they become eligible for treatment. Of those who are tested but not immediately treated, patients with higher CD4 counts are less likely to return to care. With few exceptions, men and young people are less likely to stay in treatment than women and older patients.

The struggle to keep patients in care points to wider failures in the South African health system. HIV patients, just like other patients, are deterred by long waiting times, poor treatment by health workers, drug stock-outs, and long and expensive journeys to healthcare centres. “Clearly the major problem is just the capacity of the health system to deliver chronic care for a huge population of people, whether they’re on ART or not,” says Lessells. “The temptation for … scientists is to think ‘What is it about these patients?’ ‘Why are these patients not staying in care?’ But in reality it’s a problem with the health system.”

But the South African health system isn’t entirely to blame for losing patients. Poor retention in care is “an international phenomenon, … not [just] a South African phenomenon,” Venter cautions. “We first saw this [trend] in the United States … the fact that other people can’t get it right, suggests it’s a human psychology problem and a system problem,” he says. “If I was healthy [and had] HIV, the last place I’d want to go is the clinic, getting a lecture about weight and exercise.”

Public health service delivery in South Africa fails to recognise people’s individual wants, needs, and circumstances, and how these impact their willingness and ability to access care, says Rebecca Hodes. She is the principal investigator of a new study considering adolescent adherence funded by the International AIDS Society. “There is an assumption in more reductive public health models that people love being retained in care, but people are actually desperate to get away from the health sector,” says Hodes. “They find it alienating and authoritarian.” Young people, Hodes notes, “ want to hang out with friends, to explore their independence, not sit in the clinic all day.”

Drug stock-outs, however, are solvable and avoidable. In the past year, every province has experienced stock-outs to varying degrees, according to Monique Lines of the Stop the Stock-outs Project. Along with partners, the group regularly monitors stock-outs across the country. When they occur, patients are unable to obtain their medicines, leading to confusion and frustration. Some patients find replacement medicines. Others face treatment interruptions or, worse still, are forced to go without treatment entirely. “That’s one area where we have control,” says Venter, “The government absolutely needs to prioritise [it] … It’s much easier to control [stock-outs] than dealing with the psychology of someone who has a chronic disease and convincing them to stay in the system.”

Shifting priorities of one of South Africa’s largest donors poses a new threat to retention in care for some patients. The US President’s Emergency Plan for HIV/AIDS (PEPFAR) has been instrumental in placing a significant percent of South African HIV patients on ART. PEPFAR’s priorities, however, are shifting away from emergency responses towards long-term, sustained interventions. PEPFAR will no longer directly fund ART treatment but will instead offer more technical support.

This means that patients who have received care in highly specialised PEPFAR-supported treatment facilities are moving to the public sector. What will happen to these patients during the transition remains uncertain. Ingrid Katz, an author of ‘PEPFAR in Transition: Implications for HIV Care in South Africa,’ published in the New England Journal of Medicine, says: “We have some preliminary data from a few programmes like Catholic Relief Services [showing] that [the transition] … went pretty smoothly, but it was largely because those programmes did a tremendous job trying to help people [transition] … Whether people continue to stay in care a year or two years in remains to be seen.”

Matthew Kavanagh of the US-based advocacy group Health Gap is less optimistic. He believes that between 50,000 to 200,000 patients were lost as they were shuffled from PEPFAR sites to public clinics. This data is based on a study considering patients who transition from the PEPFAR-supported McCord Hospital in Durban to public sector facilities. “19% didn’t make their first visit,” Kavanagh observes,

Kavanagh notes that his estimated numbers do not include patients who have been tested but have not yet received ART. “There were thousands and thousands of people who were in pre-ART care at the PEPFAR-funded sites. God only knows where they are now.”

Efforts by NSP Review to get comment from the Department of Health were unsuccessful.