A Saskatoon mother is getting frustrated with the Saskatchewan Government. Trina Timmerman’s son Jacob has an extremely rare metabolic disorder called Gyrate Atrophy. He can't digest the ammino acids in everyday foods, and will eventually go blind. However she says she can stave off the blindness if he drinks a special formula everyday. But that’s where Timmerman says it gets frustrating. She has to spend almost 500 dollars a month on the formula, plus more money for vitamin supplements and special foods with very low protein content. But the provincial government will only cover one third of the cost of the formula. She says she can't understand why it's not completely covered when so few people have the disorder.
“I can’t find anyone in Canada that has it at all. I think there might be someone in Ontario, but I have not gotten in contact with that person.”
But what Timmerman finds even more frustrating is that Saskatchewan Health pays 100% of the costs for other very similar metabolic disorders. Timmerman says she's been battling the government for months, and is now turning to opposition health critic Judy Junor in hopes of finally winning her battle.
However the acting Director of Pharmaceutical Services for Saskatchewan Health says they've done everything they can for the Timmerman's. Tracey Smith says they've gone beyond what's normal to help Jacob.
“An exception was made to that program so that they would be eligible under it, and in doing so when that decision was made we immediately followed up with the family to explain what that meant and what the process would be.”
However Smith says it's impossible to help absolutely everyone, and can only do what's allowed under the criteria for the different programs.
Comments
Sad State Of Affairs
This is unacceptable! I find it sickening that this is considered going beyond normal to help. I find it sickening that the excuse is: "it impossible to help absolutely everyone." I think that we are all in a lot of trouble.
Health care
I don't proffess to know anything about the person in question,but what gets me is that the government can't help a medicall problem,and yet can spend thousands on some safe injection program for addicts that created there own problem.Go figure.
Canada shamefully neglects rare disorders
Unfortunately, the problem faced by the Timmerman family reflects only too clearly the lack of fairness for patients with rare disorders. As president of the Canadian Organization for Rare Disorders, we are fighting to have national program for rare disorders in Canada. The meeting of the Federal/Provincial/Territorial Ministers of Health this past Thursday and Friday called for a national program but the provinces want to federal government to fund 50% and the federal government has indicated there are no new funds available. Patients and families need the governments to stop passing the buck and live up to their responsibilities to all Canadians with rare disorders. It doesn't matter which government pays since it is all taxpayers money. And the Canadian public has already indicated strong support for rare disorders.
I am not heartless. But I will remain anonymous.
The last 100 years of medical advancements are a double edged sword, aren't they?
People live longer than they ever have. More diseases, while not cured, are managed and people with those diseases live longer, but maybe not better.
I guess the system is flawed because some feel they don't want to help pay for something that doesn't touch them personally.
As a society, we either all have to agree that we leave no illness behind, or we leave them all behind and let natural selection decide the fate of people.
In other words, we either have to fund everybody's particular ailment treatments, or none of them.
Are you so sure that you will never be touched in your life by something like this, that you cannot ask your government (and by proxy, ourselves) to pay up?
Or, do we start letting nature decide again?
It's a tough call. I came here to write that the government can't pay for everybody, all the time. But as soon as I typed "are you so sure that you will never be touched..." I realized that I wasn't so damned sure after all.
You know, it's funny, one show by a band like the Barenaked Ladies as a benefit, where all proceeds go to the family, could feed this child for years.
A 2 hour show.
I'm not putting it all on the BNL, but I mean, any band could take a day out of their lives and do this. Any large corporation could help. Telemiracle could have a fund for these types of medical issues.
Why must it always be the government when so many more people have the power to help faster, and with far less red tape? Ted Rogers is worth 7 billion dollars...
If it really is about being "our brother's keeper" when are some of these hugely wealthy people going to look around and help people like this family? Would Ted Rogers really miss the, say, $12,000 a year it would take to help Jacob Timmerman?
There's a lot of people out there in a far better position to help people like Jacob, and they can do it a lot faster and far more efficiently than the Government of Canada.
At Wit's End
I agree that it is not always up to the Government, as the bureaucrats deal with too much red tape to get much of anything done. Dealing with the gov't is just frustrating, and in many cases, I'm afraid, useless.
Let everyone that cares and want to help do so: support a "Help Jacob" steak night, or charity concert, or town-wide garage sale. Let media promote these events to get a good turnout, and local establishments donate to the cause. It's more legwork possibly, but I believe in the end it would be much more effective.
Anyone with loss of vision knows how important and serious this is, it's worth your support.
Good luck Timmerman Family!!
Gyrate Atrophy
It seems very strange the Government will not pay the cost of this suppliment completely. What makes this disorder so different from the ones which are covered by the Goverment plan? Gyrate Atrophy is so rare that not many people will be applying for assistance but the assistance would help a young family greatly by allowing them to direct those finances to areas such as Jocob's education etc. We are Canadians and should all be treated fairly.
Support is Necessary
Sounds like Jacob and family are suffering having to pay such 'outlandish' prices for formula when other similar diseases are being totally funded. We live in a wonderful province that has gained international attention because of the Douglas Medicare foundation - let's hope Sask. Party can take another look at the criteria for the medical support and help this family! Like others have suggested, we have power in our people to fundraise - we should also believe in the power of our people to speak our mind and send letters to the legislature asking for to help this family in dire need!
Government should support in full
I think it is inexcusable that the government will not pay for Jacob's formula in full.How do they expect young families like this to make ends meet when they have expenses like this to contend with. Jacob's only hope is the formula as well as a low protein diet. There are no prescription drugs or medical procedures that will help Jacob's condition.I hope the opposition party will be of help to the Timmerman family as well as other families with rare diseases.