A forthcoming report, written by the US advocacy group Health Global Access Project (Health Gap) and the University of Pennsylvania, suggests that potentially tens or even hundreds of thousands of HIV patients may experience treatment interruptions as a result of a key change in policy for one of the world’s largest HIV funders.
The report suggests that anywhere between 50 000 to 200 000 patients may be lost from the health system going forward as a result of a shift in priorities for the policy President’s Emergency Plan for Aids Relief (Pepfar).
Pepfar is the largest programme by a single nation to combat a single disease internationally. It has historically given over $3.2-billion to South Africa.
Primarily by funding nongovernmental organisations, private sector doctors, and public sector staff to provide HIV treatment, Pepfar was instrumental in placing South African patients on anti-retroviral therapy before the medicines became widely available through the public sector. In 2010, Pepfar estimated that it was directly supporting nearly one million South African patients receiving antiretroviral therapy.
Noting that South Africa has now taken greater responsibility for its own HIV response – according to most recent department of health statistics – the government has now placed approximately 2.4-million people on antiretroviral therapy, and, citing concerns of long-term sustainability, Pepfar has shifted priorities from directly funding treatment sites and treatment providers to offering technical assistance to the department of health.
As such, both public and private sites that have historically received Pepfar support for their treatment programmes are seeing funds wither up. Specialized doctors and health staff that have been hired by Pepfar to work in the public sector no longer have guaranteed spots, and patients who have received treatment through private Pepfar-supported sites are being shifted to public sector clinics instead.
The upcoming report suggests that patients may get lost in the shuffle of things. Report authors considered data from historically Pepfar-supported McCord Hospital in Durban in order to come up with the 50 000 to 200 000 national estimate. McCord tracked patients as they moved from the specialised site to regular public sector clinics and found 19% did not make it to their first visit.
Speaking to the Mail & Guardian at the 17th International Conference on Aids and STIs in Africa in Cape Town last week, Matthew Kavanagh, one of the authors of the report, criticises the speed and management of the Pepfar transition.
He said patient retention systems for people already receiving antiretroviral therapy or waiting for the medication were not always put in place, that public sector clinics and their staff – who will now have a new influx of patients, have not been properly trained and supported throughout the process, and that there was no system to track whether patients have stayed in care. Kavanagh suggested that Pepfar immediately track patients to see whether they were lost, and, through its new technical support focus, aid the department of health in identifying and remedying barriers to keep patients in care.
Biggest treatment programme
Responding via email, James Maloney, Pepfar country co-ordinator for South Africa, said: “Although the M&G has been given access to the Health Gap report we have not and, therefore, cannot comment specifically on its assertions or evaluate its methodology.
“The government of South Africa is running the largest treatment programme in the world and is taking full responsibility for providing treatment services for South Africans. Pepfar has worked closely with the government of South Africa and will support them to provide care and treatment services to eligible patients in need.
“The government of South Africa and Pepfar are committed to addressing any issues that arise in providing continuity of care as some patients transfer from Pepfar-supported private clinics to public facilities.
“Approximately 35 000 individuals are currently receiving treatment in non-public sites supported by Pepfar. The vast majority of these patients already receive antiretroviral drugs purchased by the South African government. Moreover, information systems are being rolled out nationally to ensure that patients are tracked over time and health systems continue to be strengthened to provide for a solid care infrastructure.”
Yogan Pillay, deputy director general for HIV, TB and mother, child and women’s health in the national health department, finds the upcoming report’s methodology “flawed. Their [findings are] based on one site, McChord, which is sitting in a suburb and seeing patients from a wide-range of facilities . it’s such a special case that it makes a mockery of that projection.”
“We have transition plans for each of the [Pepfar-supported] NGOs.and how they’re planning to transition patients to the public sector,” he said.
Losing patients “inevitable”
Ingrid Katz of Harvard Medical School has a different take on the McCord data than Health Gap and the University of Pennsylvania. Katz is one of the authors of an October 2013 article published in the New England Journal of Medicine entitled “Pepfar in Transition: Implications for HIV Care in South Africa,” which also cites the McCord data. But Katz interprets the 19% figure as “evidence that patients are managing to navigate the early stages of the transition . I think [losing patients] is an inevitable part of what happens when you have a donor coming in and really lift up a programme . There are going to be bumps along the way.”
Patients getting lost in the midst of Pepfar transition may point to general problems with retaining patients. Francois Venter, deputy executive director at the University of the Witwatersrand’s Reproductive Health and HIV Institute, estimates that at every stage of HIV care – from getting an initial HIV test, to receiving follow-up results, to being placed on treatment – 50% of patients fall out of care. The problem occurs across the continent. A systematic review considering results of multiple African studies concerning patient retention, 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 for HIV to the time they were placed on long-term treatment.
Richard Lessells, a researcher with the Africa Centre for Health and Population Studies at the University of KwaZulu-Natal, says that HIV patients leave the health system because they are deterred by long wait times, poor treatment from health workers, and long and expensive transport to healthcare centres. “Clearly the major problem is just the capacity of the [South African] health system to deliver chronic care for a huge population of people,” he says. “The temptation . for us as 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.”
Patient retention an “international problem”
While Pepfar-supported sites were generally better funded and well staffed than regular public sector clinics, the hundreds of thousands of patients who have benefited will simply have to join the queues at regular public sector clinics like everyone else. Some patients may simply get deterred along the way. “The bar was set high with Pepfar . They provided the best care available, there was free treatment available on site and the wait times were often relatively short . They had amazing follow-up for patients . There was a lot of anonymity. And I think there was also just a lot of connection that people had with long term staff,” said Katz. “Now they have to go places with long lines, long waits to get medication, and it may mean that people need to come more frequently . they’re leaving work, they’re leaving family, and it makes it challenging for people to stay in care.”
But Venter said that the South African health system should not be entirely to blame for high lost-to-follow-up. Struggles with keeping patients in care is “an international phenomenon, it’s not a South African phenomenon,” he said. “We first saw this in the US, and the fact that other people can’t get it right it suggests it’s a human psychology problem and a system problem,” he said. “Some people just need time to get used to being HIV positive.”
Rebecca Hodes, a medical historian at the University of Cape Town who is currently looking at adolescent adherence to antiretroviral therapy, said health programmes should be tailor-made so that patients’ time in clinics can be reduced. “There’s an assumption that people love being retained in care, but people are actually desperate to get away from the health sector . They find it alienating and authoritarian,” she said. “It’s astronomical what we expect from people, and then we’re amazed that people fall out of care.”
Hodes said that interventions such as antiretroviral therapy clubs – in which patients who received antiretroviral therapy for a long time could get their medicines through a lay health worker at a community site, could help keep people in care without requiring them to go to clinics. A pilot project conducted by Médecins Sans Frontières in Khayelitsha showed that over a 40-month period, 97% of patients in an adherence club stayed on their treatment, versus 85% of patients who qualified for a club but stayed in the clinic system.
The clubs are now being rolled out across the Western Cape, and are being considered nationally.
Mara Kardas-Nelson is a journalist with the Mail & Guardian’s Centre for Health Journalism.