1 month ago
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I live with spinal muscular atrophy, an often-fatal neuromuscular disorder that results in progressive muscle wasting. In 2023, I was the first person in South Africa to receive medical aid cover for Evrysdi, one of three spinal muscular atrophy treatments available globally and the only one of the three registered as a medicine in South Africa.
All three spinal muscular atrophy treatments carry heavy price tags. In South Africa, the few Evrysdi approvals that are being granted by some medical aids are on an ex gratia basis: at the discretion of the medical aid, and not according to scheme rules. As such, regular reauthorisations are required.
When the fall occurred, I was applying for reauthorisation.
The fall came with severe consequences. A hairline fracture in my left hip, as well as a crumble crack in my already crushed lower vertebra.
There is no choice but to treat episodes like these as a test from the stoic gods.
Nonetheless, the counterfactuals swirl. If I hadn’t been off the medication for three months out of the past six, would I have been able to hold myself up a half second longer, and maybe prevent the fractures?
It’s impossible not to ask such questions, even if inadvisable.
Reauthorisation mess
The reauthorisation mess resulted from confusion on behalf of those handling my application; between the political will from the medical aid to pay the bill and the bureaucratic process necessary to get the reauthorisation application in front of the ex gratia committee, which has to sign off on the payment.
To explain: I received a phone call from the medical aid special cases representative a day after I ran out of medication, to tell me that my application was nowhere near the ex gratia committee, had never been to the committee and was in fact not in the system at all.
This after I’d been informed for the previous five weeks by the NGO handling my application – on the basis of the feedback they were getting from their relationships at the medical aid – that the reauthorisation was sitting with the ex gratia committee, and we were awaiting a decision.
The special cases representative then restarted the process (which had already been running for two months), accelerating it as much as possible.
This time, when I received the standard rejection letter from the chronic department it had the crucial paragraph at the bottom explicitly stating that the case was being sent on to the ex gratia committee; whereas on the first run this text was missing.
The next day I received the expected request for my financials, which I hadn’t the first time around, and from there it was a full calendar month before the next six months approval was granted.
After my interactions with the special cases rep it was clear that regardless of who says what in the offices of the higher-ups there is only one process to follow for reauthorisation, and that there are flags that need to be watched for and heeded – the most obvious being the hard requirement to submit financials.
Administrative dead space
If you’re not asked for your financials, your application is adrift, stuck in administrative dead space. Suffice to say, now that I understand the process in gritty detail, I will handle future reauthorisations myself.
I’ve had enough hairline fractures through the years to decide to manage these on my own this time. Well, with Robyn (Field), my wife. We have been quite literally inseparable for the past eight weeks, as I have been unable to move without her.
We chose not to go to the hospital for X-rays, MRI scans and such because the end result of hairline cracks – often referred to as “granny cracks” – is that you have to go home and rest and wait for your osteoporotic bones to knit together. My other cracks had resolved quickly: within four to six weeks.
These have been different. Only seven weeks in did we start to reach the stage of demonstrable knitting.
The challenge has been extreme in all dimensions: physical, mental, practical, existential. It involves an endless triangulation between 1) sitting working at my desk, while 2) getting enough bed rest to heal the fractures, while 3) becoming steadily weaker due to a lack of physical activity – an accelerating dynamic much like driving downhill with your foot on the gas.
The first four weeks were decent enough in terms of strength, but then I went off the cliff. In the context of the gain magnificence of 2023, the experience has been, and remains, profoundly jarring on the psyche. Physical pain is one thing. Losing everything you’ve clawed back physically through hundreds of hours of gym and many doses of wildly expensive genetic medication… quite another.
My mind has repeatedly gone back to 1 April this year when I walked down the back slope of our house in one go, with shoes on, using only Robyn’s shoulder for balance. Something I have not been able to do for the past seven years, or more. The memory is still fresh enough in me to know that I can do it again, and that today’s downward trajectory isn’t necessarily the future trajectory, even though that kind of strength now feels like it belongs to someone else.
Hope
There is, in other words, hope. And, perhaps more important than hope, memory. I know it is possible. I can recall the physical sensation. What it feels like on my toes, and in my thighs. If I’ve been there once, I tell myself, I can go there again.
A friend commented to me that it’s all very much like a lifelong game of snakes and ladders. To which I agree, with a caveat: in this particular game you never know where the bottom of the board is. And every time you think you do, you have to remind yourself that really you know nothing at all.
Thankfully, however, as so often seems to be the case in this world, there has been a significant, shimmering silver lining.
There are times in life, such as this one, when you need to be led. When you are desperate to be shown the way. To have a relationship with someone who gives you this, exactly when you need it, and exactly how you need it… well… it’s impossible to imagine how I would have got through without Robyn guiding me. This particular counterfactual has fallen, and continues to fall, like happy summer snow.
And then, of course, there is the greater context, which always has to be born in mind, or at least clung on to. I have done this many times before. And every single time I have asked myself, quietly, down at the bottom of that ladder, all the dark questions. The answers have never been clear in the moment, but they have always come. And – despite many grinding physical realities – they have always been positive.
Every time I have lain on my bed for weeks or months or years, watching the river of life wash by and wondering whether I will be able to fight my way back in, the answer has been yes. You can. You will. In time. DM
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