“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.
Drug companies form the biggest financial empires in the world. Playing on the emotions of individuals, and shaming a Government, (for all the people), for not maybe “saving” one citizen, they are lower than paedophiles and they have more money than anyone.
Its not all about me either; but drug companies have no, repeat no qualms about lying cheating and stealing to get what they want.
Example 1. The most commonly prescribed anti cholesterol medication in Australia, (10 million prescriptions in 2009), is just as effective if taken once a week instead of daily.
Think about that. Every prescription is a visit to a Dr. Because they are the only ones allowed to prescribe it. Medicare add 10 million visits to a doctor @$75.
Divide this amount by seven and look at your savings.
The Doctors wont tell you this because it is not in their interests to have you visit them less. The drug company wont tell you this because it is not in their interest to have you take less medication.
You then have to have Pathology to get a base level reading of your good and bad fats to see if you need the drug, and, by manipulating “acceptable” or “normal” levels in the test results, bingo!, all the tests show that everybody needs the medication. Add a further 10 million Pathology tests to the Medicare bill @$80 a pop.
Remember we are talking about just one medication here, and there are thousands on the PBS. Add the profiteering Pharmacists to an already farcical situation and you see the other side of the PBS argument.
I should also mention the businessmen vets who screw families for their savings to give animals medications that may or may not “save” them. An example here is the dying animal bitten by a snake.
For $600, the vet will use a polyvalent test to identify what snake has bitten tiddles the cat. After identifying the type of snake, you can pay up to a further $1000 for the appropriate antivenene and tiddles can still die! Again the vet doesn’t give a rats. “If you have the money”, “if you love tiddles”. That same test and serum is used on humans.
It is also a travesty that those who most need the medication can least afford it. Children and the elderly and the chronically ill.
Dont get me wrong here, I am sympathetic and empathetic; You and your animals can be as sick or well as you can afford; But the PBS is about what we can all afford.
For a drug which only works roughly 50% of the time at clinical trials, it is hideously expensive. Worse, the high price caused their competitors to pushed their own MS drug prices UP by 39%.
http://www.fiercepharma.com/story/novartis-gilenya-touches-ms-drug-price-hikes/2011-03-22
A new competitor enters the scene, and the price goes up? There is something very wrong with this picture. Unless Gilenya matches price as Tysabri, (a MS drug current on PBS, reported to be more effective than Gilenya), it will be hard to justify its inclusion into the PBS.
I have sympathy for the writer of this article and agree that when a drug is deemed necessary the PBS should subsidise the drug.
We now get to two choices which are mutually exclusive in the long term:
– A week never goes by without somebody demanding “that the government pay for X” (as has happened here).
– A week also never goes by without calls for tax cuts. In the long term, increased expenditure (i.e. new PBS listings) and reduced revenue (tax cuts) for governments is unsustainable, therefore the choices are mutually exclusive.
We’re all guilty of making both statements without pausing for a moment to consider the impossibility of having both.
Given the huge increases in costs for pharmaceutical products (and I do not begrudge the big pharma for the prices they charge, they take tremendous risks in the development of new drugs) we need to have the Philosophical debate about where the point we consider it not to be cost effective to subsidise certain drugs, or to withhold them from certain people.
For those who consider this to be a disgusting point of view, I ask, are you volunteering to wear a tax increase to finance all new necessary drugs regardless of the cost? Alternatively, what government services are you prepared to have cut (including those which will have an effect on you) to finance the purchase of these new drugs?
40k a year per patient, for a drug that will be used by a lot of patients? Does the pharmaceutical company have to amortise the cost of development in one year? They have many years before other companies will be allowed to produce generic versions of it. The only way they’ll get 40k a year from a patient is if the taxpayer subsidises it, so, really, the government should be saying no a hell of a lot more often.
I’m in a similar position to Shakira, though “my” MS hasn’t progressed quite so far yet. At this point my treatment is stalled waiting on a decision about Gilenya.
For those unfamiliar with MS medications, they all cost a heap of money. Gilenya is more expensive (for now) than the existing options, but it’s also had better results in the clinical trials (higher efficacy, and some promising though indefinite suggestion that it may actually help reduce disability, rather than merely stave off further progression).
The prices of these medications (and many others) are set assuming that the cost is effectively spread across a large pool of people, usually by way of health insurance (as in the US) or through single-payer schemes like we and the Canadians use. Pharma firms have been guilty of making small tweaks to existing medications then charging significantly more for the result, but Gilenya is not such a case: it is a genuinely new treatment which gets much better results than were previously available.
At this point I expect Cabinet will defer a decision in the interests of chasing the all-mighty holy budget surplus, but I do rather hope they do so sooner rather than later. A lot of people are stuck in a sort of treatment limbo right now waiting to know what’s going to happen.