MS in South Africa
As promised to the delegates, you can download my presentations using the links.
I am writing this en route home to London after attending and presenting at the Neurological Association of South Africa (NASA) 2025 meeting in KwaZulu-Natal. South Africa is one of the most friendly and hospitable nations I know, and this visit was no exception. Thank you for your kindness and for making it such an enjoyable experience. I plan to visit again in 2027 when you host the World Congress of Neurology in Cape Town.
It was great catching up with old friends and colleagues. It is hard to believe that I have been out of South Africa for 32 years. Because of my partial retirement, I was invited to give a keynote lecture on a chosen topic. Instead of talking about multiple sclerosis, I spoke on my career as an accidental movement disorder researcher and the imposter syndrome. The imposter syndrome is a psychological experience where you doubt your accomplishments and skills, despite evidence of success, for example, publications, and have a persistent fear of being exposed as a fraud. That’s me. In the talk, I provided a timeline of my career as an accidental movement disorder expert on top of my medical school and neurology training, using seven clinical case studies to show how an index case can influence one's thinking in profound ways. Many of my index cases have had an impact beyond clinical neurology and have resulted in class action lawsuits. If you want to hear more about these cases, I may write off-topic, i.e. non-MS, newsletters on each. As all the cases are neurological, some aspects may be relevant to MS.
As promised to the delegates, you can download my presentations using the links below or as PowerPoint presentations from this folder.
Multiple Sclerosis in South Africa
Like many other African countries, South Africa remains a country of two halves: the haves and have-nots. If you have MS and have private medical insurance, you will have access to disease-modifying therapies (DMTs). However, the prescribing rules put in place dictate access based on economics, i.e. most pwMS have to fail cheaper, often generic platform therapies and fingolimod, before being able to access high-efficacy DMTs, in particular, anti-CD20, natalizumab, cladribine, alemtuzumab and in rare cases AHSCT. This makes adopting the treatment principle of flipping the pyramid challenging. Although there are some delays in diagnosing and managing pwMS in the private sector, their neurologists get the diagnostic and management processes done relatively quickly. I suspect they would outperform most NHS units.
In comparison, pwMS in the state sector only have access to biosimilar interferon-beta and generic teriflunomide. This is frustrating as rituximab, glatiramer acetate, and cladribine are now on the WHO’s Essential Medicines List (EML) as treatments for MS. Low and middle-income countries are meant to sign up to the EML. I have therefore encouraged the South African neurologists working in the state sector to try to get the government and their regional hospitals to consider biosimilar rituximab and generic parenteral cladribine as treatments for MS. Although these latter two involve off-label prescribing, an extensive evidence base, and the EML supports their use for active MS.
What is needed is a multifaceted campaign to get the state healthcare sector to adopt the EML and buy into using off-label DMTs. They would not be alone. In Europe, Sweden and Norway are big users of off-label rituximab to treat MS. To achieve this, it may require a specific South African health economic study to show that early-effective treatment prevents healthcare utilisation, disability and improves the quality of life of pwMS, which all reduce direct and indirect costs of having MS. I also beleive that allowing access to these treatments will also empower neurologists and other healthcare professionals to manage MS according to international guidelines and standards.
What happens in the cash-strapped South African state-run healthcare system does not have to impact what happens in the relatively well-funded private healthcare system. Private HCPs and insurance companies should be incentivised to prescribe innovative drugs to ensure that Pharmaceutical companies continue to invest in and license their new therapies for patients in South Africa.
Another issue highlighted at the conference was diagnostic delays. Most pwMS in the state system must wait many months and sometimes up to a year or more for a diagnostic MRI. This is simply unacceptable. South Africa should, therefore, invest in very low-field diagnostic MRI scanners that cost only a fraction of the price of high-field scanners and are much cheaper to run. These low-field scanners have been designed as a solution for low-income countries. Early studies show that with AI, the images from these low-field MRI scanners are good enough to exclude MS mimics and provide enough information to diagnose MS. The cost of these scanners is an order of magnitude lower (~$100,000) than high-field scanners, and they don’t require specialist infrastructure to run and maintain. If I were running a neurology department in South Africa, I would lobby for a low-field MRI scanner.
The epidemiology of MS is changing in South Africa. Many more black South Africans are being diagnosed with MS. The question is, why? This is unsurprising given the changes we have seen in the Middle East. It is important to study the incidence and prevalence of MS and to look at exposures to see if we can learn about what is driving the rising incidence of MS in SA.
It was interesting that HIV is a prevalent comorbidity in South African patients with neuromyelitis optica (NMO), but was not common in patients with MS. The high HIV infection rate in NMO cases probably represents the background rate of HIV infection in SA. The low HIV infection rate in South African pwMS supports the observations from the UK, USA, Denmark, Sweden and Canada that HIV is protective against developing MS. As I have said before, I don’t think it relates to HIV as such and may be due to the highly-active antiretrovirals (HAART) that are used to treat HIV. I discussed this observation in one of my talks, referencing the index case I was involved in.
Another big theme at the meeting was brain health, a strategy to prevent neurological diseases. This dovetails very nicely with our MS Brain Health initiative and the holistic management of MS. The South African neurologists and the private healthcare insurance companies have many more levers they can pull to embed brain health in neurological practice. Creating financial incentives by reducing insurance premiums for a heart-healthy lifestyle has already been shown to work in South Africa. I would leverage this system to manage people with MS, i.e., include new domains in a pre-existing health app to improve MS outcomes and neurological outcomes in general.
I am now in contact with a new generation of MS neurologists and will follow up on some of the abovementioned issues. Like the UK, South Africa needs resources to fund a national MS incidence register and funds for an up-to-date MS prevalence study. Healthcare providers, both state and private, need to know what is happening to the incidence of the disease. I suspect the large insurance providers will have an idea from their claims data that the incidence of MS is already rising and that the costs of managing the disease, including the symptoms and consequences of MS-related disability, are rising. South Africa needs a policy initiative and public health campaign to get the South African government to adopt the EML. They don’t have to start with a blank slate. I would suggest using the ‘MS Brain Health: Time Matters’ policy documents and quality standards as a template that could be adopted in South Africa.
Then there is investment in research infrastructure. Ideally, this should be led by local academics, neurologists and scientists. I would start with a grant to purchase, run and study the utility of low-field MRI to diagnose and monitor MS in the state sector. The motivation for doing this in a high-income country will be low. South Africa is ideally positioned to take this on. Please note that low-field MRI, which has the potential to be used in the same way general physicians use a chest x-ray, i.e. as an extension of clinical assessment for patients with acute medical problems, will help in the management of neurological patients in general.
Another research project I would be interested to run is to formally look at the comorbid HIV an MS to see if we can tease out whether it is the virus or HAART that protects individuals from developing MS. One of the neurologists made the point that OCB (oligoclonal band) negative MS seems to be commoner in South Africa than in Western European countries. This observation is not unique to SA and has also been reported in North Africa and southern European countries. Is OCB-ve MS different from OCB+ve MS? Another question is how the new McDonald criteria for diagnosing MS perform in South Africa. Changes to the diagnosis of MS, for example, dispensing with the absolute need for dissemination in time, using CSF-free kappa light chain levels, and including the central vein sign and paramagnetic rim lesions on MRI, may affect the performance of the criteria in MS low-prevalence areas such as SA. Will there be more misdiagnoses? How easy will it be to implement the new criteria in clinical practice?
I would also love to study the epidemiology of EBV-related infectious mononucleosis (IM) in SA to see if the incidence is rising and whether horizontal transmission of EBV is now more common than vertical transmission. Before travelling to South Africa to discuss this subject, I emailed several South African virologists but did not get a response. If you have any SA contacts who are interested in EBV, please let me know.
If you have MS or work in SA as an HCP, academic researcher or for a pharmaceutical company linked to MS, I would be interested in your take on these suggestions. I am sure you have many more. There is a lot I have not discussed in this. If you are a potential philanthropist and want to help pwMS in South Africa, consider supporting some research. Many keen young neurologists are willing to do MS research.
Thank you.
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General Disclaimer
Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
Thank you for a wealth of information and insight. The situation in South Africa sounds much like the states. Pw/MS face many challenges that are off topic. Also, I think everything relates to this disease in some way. Cheers, Prof G!😊
What an interesting and exciting opportunity to be in SA, Gavin. So many possibilities for future research and engagement!