February 7, 2007 mcfadyena

An Editorial in Response to Trey's article

Neil's (Ryan's best friend) firs ever visit with Trey.

There is an editorial in today’s Vancouver Sun, in response to the article Pamela Fayerman wrote about Trey in yesterday’s paper. Here’s the link: http://www.canada.com/vancouversun/news/editorial/story.html?id=74897f7e-c606-4f73-837d-053d482d5c0d&k=27496. I have spent the day (when not feeding, dressing, cleaning, driving, nursing, and entertaining the little ones) thinking about the article and trying to decide whether or not and how to respond. I have asked a few people their thoughts, and since I have decided for the time being, not to respond, I thought I’d share their thoughts with you:
“While I understand the tone of the editorial, which may represent the views of a large number of British Columbians, it seems to ignore the special circumstances of Trey’s situation.  Trey’s illness is not preventable.  Trey’s illness is extraordinarily serious (not someone waiting for knee or joint surgery) and extraordinarily rare…This is controversial – but there is a lot to be said about citizen’s taking personal responsibility for their lives.  Think of the HUGE costs associated with preventable illnesses. Or the huge costs to society as a result of irresponsible behavior generally – THAT is what is drives up the costs on society.  It is simply not comparable with Trey’s situation.  Trey is totally innocent.  And, his parents are responsible contributors to society – they save the health care system in every other way. ”
“Deb: Great to hear the news and to know that Trey is being treated. Yours was indeed a short battle: congratulations. I would not respond to this article. Indeed it would be nice to set the record straight – and I have a multitude of things that should and ought to be said. However, fueling the fire may deny someone else the need for treatment. I think ongoing debate could impede someone in need. For example, tomorrow a family was given horrid news of their son and then told they could not get treatment – more money would hurt the party’s political stance.  Sometimes, silence is the best defense. I do believe “you can not be hanged for saying nothing.”  I strongly suggest you let this rest. Those who did not see it but see the response may have a view – you would be increasing the flame. The discussion or debate may take a life of its own, the human element lost and the entire thing becomes one of finance or political sway. We have many more battles and much heartache to face and others have their battles – this is not creating awareness – it may be creating a possible divide. Do not help others get a position that could ultimately hurt those with rare diseases. It is not unique for people to ask why rare disease should get such massive amounts of money while their loved ones can not get everyday treatment that has a guaranteed outcome. Our children do not need sympathy, they do not need to be the centre of a financial or political debate  – they need respect and equality – lets choose our battles to ensure that respect and equality.”
“Okay so a couple of things………. A. The treatment has been proven to be safe and effective, otherwise the FDA wouldn’t have approved it – CRUCIAL to pounce on this point. B. The stance, or argument the editor is putting foward (ie. is Trey’s life worth $300,00 when there are so many other uses for the money) is punishing Trey for having a rare disease instead of something like cancer. There is only one Trey in BC so they only have to pay $300,000 a year, on the other hand there are in excess of 7,500 new patients diagnosed with cancer each year who need treatment that would be all together in the multi-million dollar 
range…………..nobody complains about paying for that treatment………..All those patients get treatment for what they have so what makes Trey any different……..in addition we all pay healthcare premiums and therefore should have equal access to treatments. Why is it that it is okay to pay for a cancer patients treatment and not Trey’s just because Trey’s costs 
more……..it’s not his fault or the governments fault that it costs more or less people have it, nor his fault that he got Hunter Syndrome instead of leukemia…………..”


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