New data points to fears of contracting COVID-19 at congested health facilities as the primary reason for people not seeking needed care and defaulting on their chronic medication, including antiretrovirals (ARVs) for the treatment of HIV.
ARVs are but one example of how the COVID-19 pandemic is impacting non-COVID-healthcare in South Africa. According to data from the National Income Dynamics Study - Coronavirus Rapid Mobile Survey (NIDS-CRAM) that was released last week Wednesday, access to medication and services has been affected across the board.
One such case reflecting this new data is 60-year-old Anthony Duckworth who used to visit Charlotte Maxeke Johannesburg Academic Hospital monthly to pick up chronic medication for a prostate condition. Since the middle of April this year, however, Duckworth has avoided the hospital, and lost out on his chronic medication, for fear of catching COVID-19 in the busy health facility.
"The last time I was at the hospital I had this uneasy feeling walking around seeing patients and healthcare workers masked, some nurses in hazmat suits - helmets down - moving boxes of hazardous waste with skull-and-cross bone warning signage boldly displayed," said Duckworth.
"I just felt that I was walking around in a COVID fog and needed to avoid it. So I do. And when this is all over, I'll pick up where I left off."
Duckworth's condition, benign prostatic hyperplasia, is not life threatening, but the new data shows that many patients whose lives are at risk without access to care or chronic medicine are avoiding healthcare centres for the same reason as Duckworth - fear of contracting COVID-19.
Running out of ARVs
"We find it particularly concerning that 11% of our sample of public sector expectant mothers or mothers with infants have run out of ARTs [antiretroviral treatment]. Overwhelmingly, fears of contracting the Coronavirus is the most important reason cited for not seeking care," noted the NIDS-CRAM study authors.
The new data is based on interviews with around 7 000 participants already involved in previous NIDS surveys, using 50 call-centre agents, from the 7th of May to the 27th of June. The researchers used the well-established MomConnect SMS-based platform to garner an additional 3 140 responses between 24 and 30 June. The survey looked at three key issues to examine the impact of the pandemic described as "the largest social and economic shock in our lifetime" - employment, hunger and access to healthcare.
The researchers will continue to follow up with respondents and will release data in further waves as the pandemic progresses in South Africa. While the data has its limitations, including a small sample size, Principal Investigator Dr Nic Spaull wrote that "we can say with some confidence that this is the most representative survey of South African individuals and households in 2020 that currently exists".
The survey found that one in 10 HIV positive new and pregnant mothers ran out of ARTs in May and June. A total of 1 610 mothers reported needing ART, but 175 (11%) said they ran out of medication. When asked why they ran out of ART, 40% "selected 'Afraid of getting the Coronavirus' as their reason", noted the authors. "This fraction is very concerning as interruption in ART risks the health of the mother, as well as increasing the risk of transmission to the baby, whether vertical [during gestation or delivery] or through breastfeeding."
The study authors suggested that these estimates are likely "conservative" and that the situation in the general population is likely to be worse because "we focus on high-stakes types of health demand".
"Given the risk of ART interruptions for pregnant and breastfeeding mothers, we would expect this patient group to be less likely to run out of ART than other patients," explained the authors.
Skipping antenatal visits
Additionally, the data suggests that many pregnant women are skipping important antenatal visits, largely due to fear. One in six mothers and pregnant women reported at least a two-month gap in visits to their designated clinic or hospital.
"Of those who did not go to the clinic, 37% cited Coronavirus fears as the reason why they did not consult," noted the survey.
Professor of Vaccinology at the University of the Witwatersrand, Shabir Madhi, said this could have a severe impact on the country's immunisation programme.
"We've seen a 25% reduction in childhood immunisation over the past few months. This places the entire immunisation programme in a vulnerable position. We would be extremely fortunate if we don't experience outbreaks of highly contagious preventable diseases like measles, which happened in the Democratic Republic of the Congo during the Ebola outbreak. Because then, children will start dying - not from COVID-19 - but from preventable diseases," he said.
The survey further found that only 78% of people in need of healthcare for acute conditions actually sought help and visited a healthcare facility, meaning 22% chose to stay at home despite their symptoms.
"Although this is a relatively small number of respondents (133 individuals) their stated reasons for not seeking care are nevertheless interesting to unpack further. It is worrying that for those respondents who did not seek care for their acute health needs, COVID-19 and lockdown-related fears were mentioned as the number one reason," noted the survey's overview.
Significantly, the survey suggests that access to medication has been severely, and negatively, impacted by the pandemic. Almost a quarter (23%) of respondents reported that they were unable to access medication, condoms or contraception in the preceding four weeks. Patients taking medicines for chronic conditions such as HIV, TB or diabetes seem to be even worse-off.
Medicine stock outs
"Of the 1 524 respondents with a chronic condition, 705 (39%) reported that they could not access medicine, condoms or contraception," according to the survey.
While the majority (40%) of mothers who ran out of ART cited COVID-19 fears as their reason, 21% reported that there was no ART available at facilities.
This data is supported by reports of ARV stock-outs received by the Treatment Action Campaign (TAC).
TAC's acting manager for Gauteng, Tshepo Maboe, told Spotlight that access to ART has been affected by both stock-outs and COVID-related facility closures.
He said that a number of people living with HIV going to clinics to refill their ART scripts have been turned away and "told that the facility is only dealing with emergencies".
Maboe said that many patients have resorted to sharing pills so as not to default.
According to a Gauteng Department of Health memo dated 7 April: "Patients stable on chronic medication... who are in possession of a six-month repeatable prescription, should be issued a two-month supply of treatment at a time, wherever possible."
However, Maboe said that, in reality, many patients living with HIV have been given a treatment supply for just one week, and, in some cases, not at all.
A 34-year-old man living in Tembisa spoke to Spotlight on the condition he remains anonymous. He and his 10-year-old son have been taking ART since 2010, but two months ago both defaulted on treatment.
"I went to the clinic last week and they told me they are out of stock," he said.
According to him, the problem has been going on for months. Instead of receiving a two-months' supply of medicine as directed by the provincial department, he would receive pills to last only four or five days.
"That means I must go every week to check if they have stock," he said.
Apart from the waste of time and resources such as money used for transport, he told Spotlight that he feared contracting COVID-19 because of going to the congested facility so frequently.
"So I can't go. There are too many people inside there and I will catch Corona. It's high risk to go there. I don't know whether it's wrong or right but I am a defaulter as we speak right now," he said.
Maboe criticised the government for seemingly having no plan for unplanned facility closures and medication stock-outs. "If a clinic is closed due to COVID, there should be a contingency plan or something to mitigate the situation. If I am an operations manager at a clinic and there are stock-outs, there need to always be a plan, maybe to contact the nearest facility informing them that these patients would be coming and need medication. We have had so many cases like this since the start of lockdown. Access to HIV medication is not a priority for the department," he said.
Some policy suggestions
The NIDS-CRAM researchers have made several policy suggestions to mitigate the situation including more effective deployment of community health workers, the distribution of free face masks to the poorest communities, clearer and more concise communication to the public and anchoring messages in hope - a strategy that could counteract the prevailing atmosphere of fear.
According to Madhi one "of the unfortunate things we need to admit that was lacking in the South African response in the early stages, was the involvement of social behavioural scientists". Madhi is also director of the SAMRC Vaccines and Infectious Diseases Analytics Research Unit (VIDA).
"As a result, we didn't do a good job when it came to communication," he said.
One of the NIDS-CRAMS findings was that knowledge "about the three most common COVID-19 symptoms is limited". The survey also found that only one-in-three respondents reported implementing the most effective preventative measures.
Madhi said this communication could have gone some way to mitigate the fear people have been experiencing especially when it comes to accessing healthcare and what "people need to do to remain safe when it comes to health facilities".
"The absence of this is unfortunate but it is not too late for these social behavioural scientists to be brought on board," he said.
But, according to the researchers, the fact remains that the "COVID-19 pandemic has had a direct negative impact on access to non-Covid-19 related healthcare". They noted that, in May, the Gauteng Provincial Health Department announced that close to 11 000 HIV patients have failed to collect their medication since the start of the lockdown.
According to Madhi, MRC (South African Medical Research Council) data shows that there have been 10 900 more non-accident-related deaths than what South Africa would expect for this time of year.
"There are two problems at play here. There is the possibility of under reporting of COVID-19 deaths because not everyone who dies gets tested - especially those who die in the community instead of in hospital. The other possibility is the increase in death from non-COVID-19-related illness because of people not accessing chronic medication as an example. It's difficult to untangle the role of under-reporting of COVID-19 from the role played by people not seeking care for chronic and acute illness," he said.
Professor Francois Venter, from the University of the Witwatersrand's Reproductive Health and HIV Institute, has reported that headcounts at Johannesburg clinics have decreased by between 30% and 70% since the pandemic hit South Africa.
He told Spotlight that the NIDS-CRAM data is "absolutely devastating".
"This data shows catastrophic suffering in South Africa, and we will face a wave of disease and death in our immediate future. Health provision has been devastated, and the social consequences arising from employment loss will simply make things worse. COVID-19 is very serious, however, the lack of a coherent strategy to address and mitigate all the other health issues will mean far more people will die from the consequences of the lockdown than COVID, unless something is done urgently," he said.