Cry, the beloved country
Prof G, why are you in such a melancholic mood?
You may recall that I took an academic sabbatical 5 years ago and started it with a trip to South Africa. I am now back visiting my family for my mother’s 80th birthday.
Like most middle-income countries healthcare in South Africa is two-tiered. Those fortunate enough to have private insurance have access to excellent healthcare. In comparison, those who can’t afford insurance have to rely on the state system that has many challenges, particularly in relation to disease of poverty such as HIV, TB, violence and mental health problems. MS remains relatively uncommon in South Africa and is not a healthcare priority, hence pwMS have poor access to DMTs. I am contacted several times a month by pwMS living in South Africa for advice about treatment. Even those who are looked after in the private sector have problems accessing high-cost new innovative therapies, in particular, the monoclonal antibody therapies (natalizumab, alemtuzumab and ocrelizumab).
It is my South African experience that initially prodded me into formulating our essential off-label DMT list. However, since putting this list forward it has had hardly any penetration. Why? Healthcare systems are too conservative and don’t know how to deal with systems-wide off-label prescribing. Since 2014 teriflunomide, oral cladribine and ocrelizumab have been licensed and all of these have low-cost equivalents, i.e. leflunomide, parenteral cladribine and biosimilar rituximab. In addition, the evidence-base for HSCT has strengthened. So why are more pwMS living in South Africa and low-to-middle income countries not being treated with these off-label options?
I think the adoption of ideas and healthcare innovations is very complex and takes time. The good news is that since handing the baton of off-label prescribing over to the MSIF we have managed to submit an application to the WHO to get three DMTs, albeit licensed DMTs, onto the essential medicines list (EML). If successful we may be able to use this as a springboard to raise awareness of untreated or under-treated MS across the world.
If any of you reading this post have access to resources (money, time, people, media, etc.) to re-energise our off-label DMT campaign please let me know. As I sit here typing this post in sunny South Africa I can’t help thinking about how much brain and spinal cord is unnecessarily being lost in my beloved country when it doesn’t have to be so. The consequence of untreated and under-treated MS for individuals, their families and greater society can’t be under-estimated. Off-label prescribing can help.
As I am in such a melancholic mood I am about to download a digital copy of ‘Cry, the Beloved Country‘ by Alan Paton to remind me of my roots. It was probably the most influential book I read as a child and I have a strong urge to reread it. The following are a few quotes from the book, which are as relevant today as they were when I read the book 40+ years ago.
‘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.’