Friday, 3 October 2014

South Africa and my Alma Mater

Is the NHS Healthcare Heaven? #MSBlog #MSResearch

"I have had to start my sabbatical with a trip to South Africa to visit my mother who has just had a total hip replacement. Her surgery was covered by her health insurance, with a personal top-up to cover the costs of the clinicians' time. It was all done in the private sector. There is no NHS in South Africa, although there appears to be the political will to create one."


"Whilst in South Africa I have taken the opportunity to visit three academic neurology units, including my Alma Mater, Wits University, and give update lectures on 'Treating MS in 2014'. It is clear that not only has the management of MS, but neurology in South Africa, has changed dramatically since I have left in 1993 to do a PhD in London. A staggering 70% of inpatient neurology at the Johannesburg Hospital is HIV-related and I am told that in Kwazulu and the Eastern Cape this figure is even higher. Every neurologist practicing in the state sector, has by necessity, become an expert in HIV medicine."


"It is clear that healthcare in South Africa is a two-track system. Those who have private insurance have access to excellent healthcare with some caveats in the private (fee-for-service) system. In comparison those who can't afford insurance have to rely on the state system that is at breaking point financially and is focused mainly on the challenges HIV, TB and many other poverty-related problems. MS is relatively rare in South Africa and is definitely not a priority, hence MSers have poor access to DMTs. For example, only a handful of MSers are on DMTs in the state sector; the state sector simply can't afford the costs of DMTs. I have been asked several times over the last week what I would do if I was still working in the South African state sector with regard to managing MS? A very difficult question. At a grand round in Pretoria earlier this week I was shown a young man with very active and aggressive MS; he has gone from being mobile to a wheelchair in 2-years. Although he started off with rapid progression he has gone on to have several devastating relapses with an MRI showing multiple, Balo-like, enhancing lesions and a heavy spinal cord lesion load. In short this man has rapidly-evolving severe MS and would be offered a choice of natalizumab or alemtuzumab in the UK. These choices are not available to them in South Africa due to cost constraints, although he might be treated with these agents in the private sector (not all medical insurance policies would cover DMTs). Therefore I advised my colleagues in Pretoria to treat him with mitoxantrone or rituximab, although access to the latter is unlikely due its high costs. Why rituximab? If you plot out this young man's clinical course he has progressive-relapsing MS and in the PPMS rituximab trial, the subgroup of subjects who were young (less than 50) and had active scans (Gd-enhancing lesions) responded well to treatment."


"What is clear to me that for anyone who believes in Socialist Healthcare, i.e. within your society access to healthcare is a basic human right, the NHS is healthcare nirvana. My current visit to South Africa is a reminder to myself that if I had a chronic disease, such as MS, my healthcare would be covered by the NHS with no questions asked. I would have no anxieties about whether or not I could afford the care and what would happen to me if I lost my job, etc. In short the NHS is 'healthcare heaven' and we must cherish and appreciate it." 




"I am about to go off and buy myself another copy of 'Cry, the Beloved Country' by Alan Paton. It was probably one the most influential books I read as a child and I have a strong urge to read it again. The following are some quotes from the book that are as relevant today as they were when I read the booked, aged 12."

'Who knows for what we live, and struggle, and die? Wise men write many books, in words too hard to understand. But this, the purpose of our lives, the end of all our struggle, is beyond all human wisdom.'

'You ask yourself not if this or that is expedient, but if it is right.'

'There is only one way in which one can endure man's inhumanity to man and that is to try, in one's own life, to exemplify man's humanity to man.'


'I envision someday a great, peaceful South Africa in which the world will take pride, a nation in which each of many different groups will be making its own creative contribution.'

'To give up the task of reforming society is to give up one's responsibility as a free man.'

'Cry, the beloved country, for the unborn child that is the inheritor of our fear. Let him not love the earth too deeply... For fear will rob him of all if he gives too much.'

7 comments:

  1. What an eye-opener! I think people often underestimate how fantastic the NHS really is, and how we must treasure and protect it. How tragic for so many South Africans.

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  2. Why are neurologists treating HIV? Given the charcot project, is ms incidence lower in SA because of the racial background of the population, vit d levels or HIV rates?

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    1. neurological complications are a common manifestation in HIV infection and can affect 40% of patients. The incidence of MS is low in the black community but is present in the white community though at a lower level than Northern Europe, there is a higher incidence of MS in white emigrants to South Africa compared to the native born white population.

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    2. I do find race and ethnicity in MS very interesting, though it only provides generalisations to a some extent. Just my luck that I'm 25% Persian (quite high prevalence despite being in MiddleEast), 50% Italian (family from central Italy, which has quite high rates for Italy) and 25% Scottish (last I heard one of highest rates in world).But no one in my family as far as I can trace has/had MS.

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  3. you should do the charcot project over there!!!

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  4. I remember reading about a demyelinating disorder that I thought was interesting.

    J Neurol Neurosurg Psychiatry 2001;70:500-505 doi:10.1136/jnnp.70.4.500
    Review
    Demyelinating disorder of the central nervous system occurring in black South Africans
    G Modia, A Mochana, M Modib, D Saffera

    OBJECTIVES To investigate the nature and cause in eight black South African patients of a recurrent (multiphasic), remitting, and relapsing demyelinating disease of the CNS.

    METHODS The clinical and laboratory investigations and radiological manifestations of these patients were documented.

    RESULTS Each patient had two or more acute attacks of demyelinating disease affecting the CNS. The clinical presentations of the patients were predominantly those of multiphasic neuromyelitis optica (NMO). Brain MRI in these patients showed features consistent with those described for acute disseminated encephalomyelitis (ADEM), as well as lesions that are described in multiple sclerosis. There was involvement of the corpus callosum in addition to typical ADEM lesions. Laboratory investigations excluded all other known causes of multiphasic CNS demyelination. Oligoclonal antibodies were not detected in these patients at any time. The patients were all from a population with a low risk for MS (black South Africans).

    CONCLUSION The patients described here represent a new phenotypic expression of a recurrent (multiphasic), steroid sensitive, inflammatory demyelinating disorder of the CNS occurring in black South Africans. The disorder is either a distinct inflammatory demyelinating disorder of the CNS of as yet unknown aetiology, or a varied form of MS (ADEM/NMO) occurring in a population with a low risk (where the genetic trait and environmental risk factors for MS do not exist) for MS.

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  5. The young male referred to by the author is my brother. I was so disappointed that I could not make the appointment with the different neurologists that day....it might have cleared up a lot of questions for me too. However, just want to convey a thank you to the author for his feedback to my brother that day. He really appreciated the attention and the feedback even though the "bigger picture" is not a good one. Hopefully the healthcare will progress and provide him with the necessary care and medicine that could help him . Untill then, I will do my best to make his journey with this illness as comfortable and bearable as possible. Acceptance is not an easy thing and currently his biggest struggle. Slowely losing your independance.... depending on your younger sister for almost everything, cannot be easy...and observing this every day drives me to tears. But God is great!!

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