Contrary to recommendations that there should be two to four rheumatologists for every 100 000 adults, South Africa had only 85 for a total of 56m people.
According to a 2017 study, this is roughly 0.15 per 100 000 people – less than a tenth of the minimum recommended number – and affects thousands of sufferers in the long run, because many conditions will remain undiagnosed and untreated, writes Elna Schütz for Spotlight.
“We do not have a reach of rheumatology in all provinces,” said Dr Ayesha Wadee, president of the South African Rheumatism and Arthritis Association (SARAA). “I think a whole lot of patients 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 there are too few specialists in the country, and they are not sufficiently supported and recognised.
RA, gout, osteoarthritis and others
Thousands of people suffer from daily pain from a variety of rheumatological illnesses that include autoimmune and arthritis conditions.
Rheumatoid arthritis (RA), for instance, is estimated to affect up to 1% of people globally.
While there is little epidemiological data on these conditions in Africa, 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, said he had 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.
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
“In terms of whether we’ve got an adequate number of rheumatologists, the answer is no,” Tikly said: fewer than 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 past 30 years, but clearly not enough.”
Of these specialists, Tikly said 80% to 85% practice in the private sector, mainly in large urban areas, causing major gaps in rural regions. To his knowledge, Mpumalanga, Limpopo, North West and the Northern Cape have no rheumatologists at all.
Dr Bridget Hodkinson, head of rheumatology at Groote Schuur Hospital, said their norm was to see a patient within six months unless it’s urgent. Private practices frequently have waiting lists of up to nine months.
“A lot of these joint problems are treatable and reversible if you catch them early,” Hodkinson said. “But by the time many patients reach a rheumatologist, they have 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. “In South Africa, we do have the best drugs are available, but our patients are unable to access these freely,” said Wadee.
In the public sector, hospitals frequently don’t have what they need. “Many of the drugs we use to treat rheumatological conditions are not even on the Essential Drug List,” Wadee added.
Tikly said many of the drugs they used were actually borrowed from other specialties like oncology, instead of using those ideally formulated for these diseases.
In the private sector, Wadee said only those on premium medical aid tiers receive adequate cover for many rheumatological illnesses, including people on Prescribed Minimum Benefits (PMB) lists.
The doctors point fingers at the National Department of Health and medical aids, saying they have lobbied these bodies to recognise the need for rheumatological treatment. Wadee said SARAA had up-to-date guidelines for treatment but these haven’t been accepted by the Council of Medical Schemes and the minister of health.
But proper recognition goes beyond this.
Deaths related to rheumatological illnesses are rarely acknowledged as such and death certificates usually only name the resulting conditions, like heart disease, said Tikly. “We were unable to convince the national Department of Health that muscular skeletal diseases are an important cause of morbidity and have an impact on health.”
Foster Mohale, spokesperson for the national Department of Health, said rheumatological conditions were included in Standard Treatment Guidelines (STGs) and on 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 said a national committee decides on the EMLs “based on priority conditions within the country, which includes medicines used for rheumatology”.
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 PMB condition under the Chronic Disease List (CDL).
She said conditions in the CDL have specific treatment algorithms, therefore, decisions relating to the medical schemes’ funding should be based on the PMB treatment algorithm for RA. “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.”
On whether rheumatological illnesses wee sufficiently covered by medical aids, Potelwa said: “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, like the shortage of rheumatologists, experts recognise there is progress.
“I think it’s getting better,” Hodkinson said, acknowledging that more rheumatologists have and are being trained and that South Africa fares better than many other countries on the continent.
Emma Cora Gardiner, a recently qualified rheumatologist at Livingstone Tertiary Hospital in Gqeberha, probably one of only three in the province, said after her mentor relocated, 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 said this could be improved by increasing exposure at an undergraduate level and generally working to raise the awareness and attractiveness of the speciality.
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