"We do not have a reach of rheumatology in all provinces in South Africa," says Dr Ayesha Wadee, the president of the South African Rheumatism and Arthritis Association (SARAA). "I think there [are] a whole lot of patients who don't even know that rheumatologists exist."
Rheumatologists focus on systemic autoimmune diseases and muscular-skeletal disorders. Their patients frequently face long-lasting, severe pain that can lead to disability. Yet, these specialists say there are too few in the country, and that they are not sufficiently supported and recognised.
'Things could have been done better'
Nurjawaan Rawoot was only ten years old when she first fell ill, feeling incredibly tired and swollen, to the point that she couldn't walk on her own. After two years of testing and attempted treatments at a Cape Town public hospital, she was finally diagnosed with lupus - an autoimmune disease that can lead to inflammation and tissue damage, including in one's joints.
She has lived with the disease for almost two decades and was recently diagnosed with a second autoimmune condition - neuromyelitis optica. This comes several years after she lost her eyesight. "I personally feel that if proper testing was done and there weren't so many delays, a lot of things could have been picked up quicker and also, maybe be prevented."
Overall, she says treatment in the public healthcare system has helped her and has been free, but delayed. For instance, she says that during a recent hospitalisation, she waited a week in the emergency ward and then another couple of days, until she could get the MRI scan she needed to be treated.
While she has a positive outlook on her journey, Rawoot says one can easily be overlooked in an overwhelmed system. "You're going to literally and figuratively have to be a patient that is patient because the waiting process is actually the most painful part," she says. "It's not that there's a problem with the doctors, but because of the overwhelming [number] of patients and the lack of staff, things could have been done better, but it's just that there aren't the resources to help each patient the way I feel that they should be helped."
RA, gout, osteoarthritis, and others
Rawoot is one of thousands of people who suffer from daily pain due to a variety of rheumatological illnesses that include autoimmune and arthritis conditions. For instance, rheumatoid arthritis (RA) is estimated to affect up to 1% of people globally.
While there is fairly little epidemiological data available on these conditions in Africa, a review article suggests that reports of rheumatological illnesses are increasing and the situation is often worse than in other parts of the world due to patients presenting later on in their disease course.
Mohammed Tikly, Professor Emeritus at Wits University and former head of rheumatology there, says he has seen the specialty grow since the first centres in the country were started in the 1970s. He has seen an increase, for instance, in gout cases linked to obesity and alcohol intake.
He says the most commonly seen illness by rheumatologists is RA, while gout or osteoarthritis are frequently managed by general practitioners. While GPs, traditional healers, and other healthcare professionals are well-placed to treat some rheumatological illnesses like gout, there is such a large unmet need in the country that they are often faced with more complex cases, or are not well-informed on rheumatological issues.
Good but too few
Internationally, it's recommended that there should be around two to four rheumatologists for every 100 000 adults. Instead, according to a 2017 study, South Africa had only around 85 in total for a population of around 56 million people in 2017. This works out to roughly 0.15 per 100 000 people - less than a tenth of the minimum recommended number. This is very low by rich-world standards, yet by far trumps the numbers in other African countries.
"In terms of whether we've got an adequate number of rheumatologists, the answer is no," Tikly says. He estimates just under 100 rheumatologists are currently registered in the country. There are also seven training centres, holding about 12 to 14 trainees. "So we have grown considerably in the last 30 years, but clearly not enough."
Of these specialists, Tikly says 80 to 85% practice in the private sector and are focused in large urban areas, causing major gaps in more rural areas. To his knowledge, Mpumalanga, Limpopo, North West, and the Northern Cape have no rheumatologists at all.
Internationally, it's recommended that there should be around two to four rheumatologists for every 100 000 adults. Instead, according to a 2017 study, South Africa had only around 85 in total for a population of around 56 million people.
This invariably results in patients struggling to access care and long waiting times.
Dr Bridget Hodkinson, head of rheumatology at Groote Schuur Hospital, says their norm is to see a patient within six months unless it's highly urgent. She hears of private practices frequently having waiting lists of up to nine months, while Wadee says private healthcare sits at around three months.
"The problem is a lot of these joint problems are treatable and are reversible if you treat them early," Hodkinson says. "By the time many patients reach a rheumatologist, they've got irreversible joint disease, which basically needs surgery or a wheelchair. So the frustrating part is that if we can get in early, we can do something."
Treatments borrowed and begged
The difficulties around access extend to treatments across the healthcare system, both due to lack of funding and availability. Wadee says, "In South Africa, we do have the best of drugs that are available, but our patients are not able to access it freely."
For the public sector, hospitals frequently don't have what they need. "A lot of the drugs that we use to treat rheumatological conditions are not even put on the Essential Drug List," Wadee says. "Even in academic centres, they struggled to get access to drugs that do work for patients," Tikly says, adding that a lot of the drugs used for rheumatology are actually borrowed from other specialties like oncology, instead of using those ideally formulated for these diseases.
In the private sector, Wadee says only those on premium medical aid tiers receive adequate cover for many rheumatological illnesses, including those that are on Prescribed Minimum Benefits (PMB) lists. Wadee says she spends a lot of time trying to access drugs for patients. "You can't be fighting every single case every single day."
The doctors point fingers at the National Department of Health and medical aids, saying that they have lobbied these bodies to recognise the need for rheumatological treatment. Wadee explains that SARAA has up-to-date guidelines for treatment and that these haven't been accepted by the Council of Medical Schemes and the Minister of Health.
But proper recognition goes beyond this.
Tikly says deaths related to rheumatological illnesses are rarely acknowledged as such and death certificates usually only name the resulting conditions, such as heart disease. "We were unable to convince the National Department of Health that muscular skeletal diseases are an important cause of morbidity and they have an impact on health."
Foster Mohale, spokesperson for the National Department of Health, says that rheumatological conditions are included in Standard Treatment Guidelines (STGs) and Essential Medicines Lists (EML) and that in the tertiary setting, other medications can be motivated for through Provincial or Hospital Pharmaceutical and Therapeutic Committees. He explains that a national committee decides on the EMLs "based on priority conditions within the country, which includes medicines used for rheumatology."
"The National Department of Health is fully committed to ensuring equitable access to quality healthcare through the provision of safe, effective, and cost-effective medicines and other health technologies," he says.
In the private sector, according to Dr Toko Potelwa, Senior Manager of Clinical Consulting Services at the Council of Medical Schemes, rheumatoid arthritis is a Prescribed Minimum Benefit (PMB) condition under the Chronic Disease List (CDL). She says the conditions in the CDL have specific treatment algorithms, therefore, decisions in relation to the medical schemes' funding should be based on the PMB treatment algorithm for Rheumatoid Arthritis. "In instances where a member has failed the treatment specified in the algorithm, medical schemes are allowed to pay for other evidence-based, cost-effective, and affordable treatments."
Responding to whether rheumatological illnesses are sufficiently covered by medical aids, Potelwa says, "As Rheumatology illnesses are included in the PMBs, if funding is provided in line with the Regulations, taking into consideration the prevailing state level of care which is the standard of care, that funding should be sufficient to improve the quality of health and prevent complications."
How to improve
While there are serious challenges in the country, such as the shortage of rheumatologists, experts do recognise that there is progress.
"I think it's in a good state and I think it's getting better," Hodkinson says. "We all know where we need to go." She acknowledges that more rheumatologists have and are been trained and that South Africa fares better than many other African countries.
Sign up for free AllAfrica Newsletters
Get the latest in African news delivered straight to your inbox
For instance, Emma Cora Gardiner is a recently qualified rheumatologist at Livingstone Tertiary Hospital in Gqeberha, likely one of only three in the province. After her mentor moved away, she fought to keep the rheumatology service running and has now built up a full unit, though it meant partially living in Cape Town to qualify in the discipline. "The public sector is resource constrained, so it wasn't that easy. We were up against all sorts of voices of dissent, saying no, we really need to close the service, and the patients can just go back to where they came from."
Understandably, most experts call for more rheumatologists to be formally trained. Gardiner explains that this could be improved by increasing exposure at an undergraduate level and generally working to raise the awareness and attractiveness of the specialty. Wadee says there's been a backlog of training posts being created and posts being frozen.
Training of other healthcare professionals, as in Gardiner's case, can help improve overall access to care. There are a variety of programmes underway, from virtual and in-person training of GPs in more remote areas to working with countries across the continent to train specialists there.
Another area of focus is understanding the size and shape of the actual unmet rheumatological need in the country. Both Wadee and Tikly speak of efforts being underway to quantify and then act or lobby for more action on this.
And patients also have a role to play.
Gardiner hopes that more public voices of patients speaking out about their troubles could motivate change. Wadee says patient advocacy is powerful in the form of patient-run support and education groups.
Overall, rheumatology may be a specialty that many people in South Africa never think of until one day when they might desperately need it. When one does need it, one is likely to find timely, high-quality care hard to come by, despite the best efforts of the country's small number of rheumatologists.
"We're busy, we're training," Hodkinson says. "Our services are flooded in the state where we have frantically busy clinics five days a week and we have not enough hands, [and] not enough time to spend on our patients. But at least we are there and we're trying to meet the challenges."
