When you spend most of your waking day thinking and doing multiple sclerosis you begin to wonder if being a super-specialist is worth the effort.
I have a rich person’s worldview which is clouding my thinking and ability to produce a solution for MSers living in resource-poor environments. I need to go back to my roots, my African roots, and remember what my teachers taught me about the practice of medicine and public health in rural poor South Africa.
It was obviously disappointing when the World Health Organisation (WHO) rejected our application to get three MS DMTs onto their Essential Medicine List (EML). The idea was a simple one; get the WHO to add three licensed MS DMTs to their EML and it would immediately escalate MS to being a global medical problem and not just a rich-world disease. The global MS community could then use the EML to pressurise the governments of low- and middle-income countries to provide their citizens with appropriate MS services.
In reality, the EML was created for the poorest of nations to make sure low- and middle-income countries can provide the bare minimum for their citizens. Could we really have expected the EML to include three high-cost drugs when poeple in resource-poor countries are still dying from diseases of poverty? Therefore it is back to the drawing board. How do we address undiagnosed, misdiagnosed, untreated and undertreated MS in these environments?
I think we need to start small, start local and build slowly. Firstly we need to identify local healthcare champions and to upskill them with the necessary resources to allow them to make things happen. This will not be easy when for example in most of these countries there is limited access to MRI scanners. Could we roll back the diagnosis of MS to a time when we did not have MR imaging? In reality, in the correct context, MRI is only necessary to exclude MS mimics. Would the 1983 Poser criteria be sufficient? Would a CT scan and basic CSF and blood analyses to exclude MS mimics be sufficient to make a diagnosis of clinically-definite or laboratory-supported MS in these countries? This may sound retrograde to most of you, but this is how we need to start thinking if we want to improve MS services and the treatment of MS in these countries.
When I was a final year medical student, six of us in our firm, arrived at a rural hospital in South Africa for our ‘rural block’ to find that the two missionary Swiss doctors, a husband and wife team, who had been running the hospital had returned to Switzerland the week before. The husband had had an episode of renal colic. Since their departure, the hospital was being manned by a handful of very competent and extraordinary nursing staff. The hospital was in a desperately poor part of apartheid South Africa and was massively under-resourced.
On arrival, the six of us divided the hospital up between us and drew up an on-call list for us to man the small casualty or A&E during the day and night. The treatment protocols were very rudimentary. For example, when someone came into casualty with a high temperature we did a thick blood smear to diagnose, or exclude, malaria. Those who had malarial were treated with antimalarials and those didn’t have malaria got antibiotics to cover typhoid fever with instructions if they were not better within 48 hours to come back for another assessment. In our time there one poor soul had to be transferred urgently to the district hospital with an acute abdomen; presumably a perforated bowel from typhoid which was endemic in the area at the time.
I took charge of the medical ward. On my first ward round, I noted that one of the patients with severe congestive cardiac failure had not had echocardiography or even an ECG. In the Johannesburg hospitals, where were being trained this was routine. His chest x-ray revealed a massively enlarged heart with pulmonary oedema (fluid in the lungs). This hospital had no echo machine and the ECG machine was not been used because the rubber bulbs on the suction electrodes had perished. After the ward round, I spent an hour fixing the ECG machine; I got it working with the limb leads, but only one of six chest leads. This provided an ECG rhythm strip which was enough to exclude digoxin toxicity, on his current dose of digoxin, and severe hypokalaemia (low potassium) as a complication of his diuretic therapy. We couldn’t get blood electrolytes measured as the flame photometry was broken and waiting for repair. Despite this, I cautiously increase his doses of digoxin and frusemide. Over the next week, I got rid of his peripheral and pulmonary oedema on a low salt diet, fluid restriction, digoxin and frusemide. My only tools at my disposal were my clinical skills, a daily weight and a basic ECG. By the end of week one, this patient had recovered sufficiently to be able to walk the short distance to sit and warm himself in the sunshine outside.
For those interested, towards the end of our 3-week stay, we started to get blood potassium and sodium levels back on our patients’ using flame photometry. The machine, which had been broken, was repaired by a technician from a nearby town. I actually learnt from the technician how to use the machine and would fire it up in the middle of the night if and when a blood sodium or potassium measurement would help in the management of one of the patients in the hospital.
When a cardiology consultant arrived from our medical school to teach us for the week it was clear that without his beloved portable echo machine he was as good or as bad as me in making a definitive diagnosis of the underlying cause of this patient’s cardiac failure. My amateur ears had heard a cardiac gallop and mitral regurgitation, which his ears confirmed. My differential had been rheumatic heart disease or cardiomyopathy, most likely due to alcohol, poor nutritional or possibly post-viral. His differential was the same, but he said we needed to ascertain whether or not he needed a mitral valve repair or replacement. The nearest teaching hospital with a cardiothoracic unit was 150 km away and we would need an outpatient appointment for him to be seen there. The nursing sisters made the call and arranged a booking, which was in four months time.
I don’t know if this man ever got to the regional non-white hospital in Pretoria for his cardiac assessment; I never heard. He prognosis was so poor that a 4-month delay in accessing specialist care may have been too long for him. Even if he had been diagnosed with rheumatic valve disease and had had a mitral valve replacement he would likely have required life-long anticoagulation with warfarin; not an easy drug to manage in rural South Africa.
Now take this experience of mine and imagine we are dealing with someone with possible MS in living in this environment? Not an impossible situation, but a very difficult one. We would have to make sure the local doctors and regional neurology services have the knowledge and skills to make a diagnosis of MS. Even if the diagnosis was made what then? Would they have the resources to prescribe, administer and monitor one of the high-cost DMTs that would have been, if our application was successful, on the EML list? Let’s say it was glatiramer acetate, would the system have the necessary cold chain to receive and distribute the drug? Would the patient have a fridge at home to store the monthly, or three-monthly, stock of GA? How would the patient be monitored?
I hope you realise that the challenge of diagnosing and managing MS in resource-poor countries is not a trivial one.