“Gilenya. Your medications have names that sound like characters from a Gaellic fairy-tale,” said my friend.
And the scene at the hospital did look like a magical ritual as the nurse passed each patient a pill and a glass of water. A magic pill — which will hopefully stall my multiple sclerosis (I hate using the word “my” in relation to multiple sclerosis, as though it is a possession rather than something I would prefer to discard) and at the very least has provided me with some respite from a skyrocketing level of stress as I spent months trying to decide between treatments.
Media coverage of the MS pill tends to focus on the fact that it’s a pill rather than an injection. But I can live with having to inject myself several times a week, even if the injection craters all over my belly have put an end to my dream of becoming a bikini model. I don’t mind the shots — except that according to my neurologist, that have not been doing the job in my case.
I need to change to more aggressive treatment — and despite its dainty fairy name, Gilenya is a more aggressive treatment — or face a strong risk of “serious disability” within the next five years.
“My” multiple sclerosis is remitting-relapsing at the moment, which means it flares every so often — too often, apparently, for my long term health — and wonky balance most of the time. Over the past year or so, I’ve started using a walking stick a lot of the time, as even though I can do without it and at my best I can walk relatively long distances, I was taking a few too many undignified tumbles.
But I still anticipate eventually throwing it aside. And I want to stave off — hopefully forever — when “my” MS becomes progressive, meaning that there is no remission.
Last year, when the neurologist told me that in order to do that, I needed to choose between several unappealing treatment options, I curled up into a little ball for several months, emerging only to growl “none of the above”. Some did not really sound compatible with full-time work (“but if you don’t take action, your MS may leave you unable to work at all) and/or generally unpleasant (“not everyone loses their hair on that one”) or — well, stressful.
Then there was the drug that was taken off the market for a while a few years ago after patient deaths, until the benefits were determined to outweigh the risks.
“Don’t they have any drugs that never kill anyone?” my daughter would say when I mentioned this option, before retreating to her bedroom.
Gilenya is a new drug, so the long-term hazards are not known. But for the moment, it seems the best balance between effective (with the usual caveat about varying from patient to patient) and manageable.
It may or may not stall the MS — “my” MS — but like a magic token, it magically dissolved my decision-making induced stress. Gilenya was not originally among the options on offer, and it is still not widely available. Its appearance was an unexpected gift from a fairy tale godmother.
However, like most fairy-tales, there is a sinister shadow. In this case, it was the plastic card handed to us along with our pills telling us that the drug company was providing the treatment for 12 months as a “product familiarisation program.” As the drug is not on the PBS, not all the patients who might benefit from it have access to it. Each neurologist can provide it to ten patients courtesy of those kind people at the pharmaceutical company — and I am way too much of a left-wing conspiracy theorist to feel comfortable writing those words.
The cost of the drug will be $40 000 per year without the PBS subsidy.
I read somewhere that the best way for non-medicos to keep informed about new treatments was to watch the share price. So I have google alerts on the names of various MS medications – “+ “share price”.
MS is big, big business. As a business opportunity, it’s right up there with cancer. Every time there is news, good or bad, about new treatments, the share price of the relevant companies dips or rises.
The companies that are producing these products are looking like good investments at the moment. The financial sections are the pages to turn to, for coverage of MS treatment in language that even dumb social scientists can understand.
As for the language that I would like to use to describe the politics of turning the final approval of new medications into a Cabinet decision — well, it’s easy to understand, but unprintable, even though Crikey does not describe itself as a “family publication”. At the least, this delays treatment to patients who may benefit from it. At the worst, it may be turned down (and if we don’t need to worry about that happening, then why the delay?)
I know that the National Budget is not All About Me. But stress — not to mention pain — make you tunnel visioned. Also very, very cranky.
You really don’t want to piss me off, Nicola Roxon.
Or not more than you already have.