Thursday, March 20, 2014

News article roundup for Madi Vanstone

I promised a news roundup of the articles I had on the Madi Vanstone issue.  Madi is a 12 year old girl whose Cystic Fibrosis has been cured thanks to the drug Kalydeco.  The catch: it’s 300K per year and not funded by the Ontario government. 

An article I cited in my last blog post in the Sun included a facsimile of Madi’s letter to Kathleen Wynne.  In that letter, the girl argued that she deserved to live, along with the others like her who needed the drug to keep them alive.  Christina Blizzard called Wynne “morally and financially bankrupt” because of this issue.  Blizzard also says “within 30 days, diagnostic tests for CF were negative as the drug corrects the defect in her [Madi’s] body.”  Blizzard also stated that Madi and her family wanted to meet with Wynne and called Madi courageous. [1]

In the Sun’s editorial of the same day, the editors of that paper said, “A little girl shouldn’t have to beg for her life to the premier.”  In the article, the editors say that the annual cost of the drug is “348,000 per year.”  According to the article, 150 of Madi Vanstone’s classmates have accompanied the girl to Queen’s Park in support.  They then say, “This is the human cost of political corruption and of nightmareishly insensitive cabinet ministers, who tell people not to get upset about billion-dollar boondoggles because, after all, it’s only the cost of a Timmy’s coffee, per person, per year.”  Then it is pointed out that the Ontario government is funding refugees to OHIP at the cost of 100 million per year over five years.  They then ask if 60,000 dollars – the shortfall of what her parents are making up – is worth a girl’s life.

The ugly truth is that the girl has been turned into a political football and she is now in the headlines for good or ill.  The sad part is that we are not looking at this person as a human being but as a cost to be borne or a negative statement on a balance sheet.  That right there is an example of how far we have fallen away from the social contract that we thought we had. [2]

Christina Blizzard took up the story once more in the Sun the Tuesday after Madi Vanstone visited with the Premier for a ‘little chat’.  It turns out that the premier made noises about talking to the manufacturer of the drug and arguing with them over the costs, but no promise was made to fund the drug or get subsidies in place for her.  The argument made is that there are other nations paying moremoney for the drug than we are – Germany for instance – and that we can’t get the cost any lower than that.  It was also pointed out that there was systematic waste in the Ontario government with regard to how our money was spent as in the e-health and ORNGE scandals for example. 

The point made in the article is that if we had money for these wasteful instances, we could surely find money to help Madi.  I think the more sinister part of it is that the money is deliberately wasted so that the government can choose to ignore those people who are suffering: they point to the lack of money – from whatever cause – and show spread hands and empty pockets.  The scary part is that the company that makes the drug – Kalydeco – (Vertex) “...have not yet reached an agreement...” on the pricing and provision.  Then the government can change the rules to sweep in and look like heroes – and remember this is a provincial election year – and get some votes back.  I realize that this is far-fetched, but stranger things have happened in political history.  The worst thing would be to have one group played off against another in the funding race.  Because that still leaves Madi short in funding. [3]

One letter writer in the Sun asked how it is that a medication can cost so much to a consumer per year.  They questioned the processing costs or the worker costs.  Then they said, “More likely it’s as simple as the lion’s share of this money lands in corporate pockets.” [4]   Similarly in the Toronto Star a letter writer points out, in mentioning costs,  says,

Rare disease drugs could never “cripple” health-care budgets in Canada or anywhere else in the developed world.  Of Ontario’s 48.9 billion dollar health-care budget, up to 13 percent goes to drugs.  Of the total drug spending (Up to 6.7 billion), less than 1% (0.7 percent or $34 million) goes to rare diseases.  That’s because the number of patients needing these drugs is so very, very small.” [5]

That kind of puts things in perspective for me: it shows how big the budget is, and how proportionally small the drugs budget is.  In further perspective, for the government not to pay the cost for this drug – which cures CF in practical experience – now seems petty and demeaning.  And then to use the issue like a hot potato and throw it back to the drugs manufacturer is to refuse to acknowledge these instances of need.  The point I am making here is this: a human being's need has been reduced to numbers.  The person is in danger of disappearing.  If that can happen in this case,  to a 12 year old girl, it can happen to anyone, regardless of safeguards put in place.

I could say that this is an injustice, but it is more than that somehow.  I think this sort of argument cuts to the heart of disease, health care provision, funding and political manoeuvring.  This is also an argument never mentioned but put forward elsewhere: chronically ill people are expensive.  Expense is a bad word in our economy, so what is going on?  Bias against the chronically sick.  No-one has said it but there are those who think it for now: the chronically ill, being expensive should have to justify their lives in every instance.  That’s why the Groningen Protocol exists in Holland: the silent disabled are socially silenced before they are killed.  They are expensive, give nothing and therefore do not deserve to live.  But Madi Vanstone and her classmates would say otherwise.  She deserves a start, surely?  She deserves a better life than waiting on a transplant list, no?

Here’ something else to consider in all this funding arguing that’s going on: according to Bloomberg Business Week, accessed online through a google search, Vertex Pharmaceuticals is slated to have made 1.1 Billion dollars profit for 2013.  I think they can afford to give Madi’s family a respite.  What do you think? [6]

[1] “Hear Madi Roar”, Toronto Sun, March 2, 2014, p.8.
[2] “Madi deserves to live, Premier Wynne”, Toronto Sun, March 2, 2014, p. 4.
[3] “Not good enough, Wynne”, Toronto Sun, March 4, 2014, p. 5.
[4] Letters pages, “Blatant profiteering”, Toronto Sun, March 9, 2014, p. 8.
[5] Letters pages, “Bankrupting health care – not!”, Toronto Star, March 16, 2014, p. A12.

[6]  Accessed online, March 20, 2014

1 comment:

  1. The sad truth here is the "cost" of the drug. Is that the sale price of the drug? If yes, then what is the TRUE cost of the drug? Recently, I was prescribed a drug whose cash price was $241.00 for 60 tablets. The cost to the pharmacy? $22.00. And that's not unusual. Generic Ambien is dirt cheap...but not to the consumer. Someone should be asking a drug company if they can supply the drug to the child for cost.


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