Article 1: Catch 22 plus 40

Date: January 11, 2017
Medications: Enbrel, Rabeprazol,
City: North Vancouver

Allan (not his real name) is 62 years old. His family genetic history indicates he will live into his 80's, all things being equal. But, of course, they are not equal. Allan suffers from a rare disease called Idiopathic Thrombocytopenic Purpura (ITP). Without treatment he could die in pretty short order, but I'm getting ahead of myself.

One day, in 2000 when he was 48, Allan noticed blotchy purple bruises and small red dots (petechiae) on his skin and he was feeling much more tired than usual. Examination by a specialist revealed he had developed ITP. The disease has no identifiable origin and affects about 10,000 Canadians. It is akin to the signs of Haemophilia, which could also include spontaneous bleeding from his mouth or bleeding that doesn't clot from any cut. The bruising indicates serious internal bleeding. It is, thankfully, treatable.

Whenever Allan has an onset of the symptoms he must go to an emergency ward as soon as possible where he undergoes a six-hour infusion of antibodies by Intravenous Immunoglobulin (IVIG) on two successive days. He was getting symptoms about every two to four weeks. I'll leave it to you to understand how his life was affected. He had to make severe changes to his work, he was a city engineering supervisor and his employer was able to accommodate him, but ultimately he retired earlier than he had planned because of the diseases' effects. One of the sub-conditions of ITP is that his white blood cells (neutrophils) are severely reduced and he is very susceptible to any other disease. A cold could put him flat out. Flu could kill him because of his repressed immune system. He can't get the vaccines which are live viruses (the disease itself). Under the IVIG treatment his choices are living with the compromised immune system or dying from blood loss. Another side effect, for him at any rate was a type of crippling, severe arthritis.

In 2005 his specialist told him of a biologic medication that could lengthen the periods of wellness and didn't cause the reduced immunity that came with the IVIG treatment. He jumped on that as soon as he could. Under the new routine when his symptoms cropped up he had to attend hospital for four long infusions of the medication over a four week period. The good news was he was symptom free for varying periods averaging 15 months until 2009. As of July 2013, he has been symptom free since November 2011. The medication also served to stop his arthritic-like condition, and he has lived without that disabling pain and treatment of the condition since 2005.

Because he has a medical plan attached to his pension benefits, his medication is paid for. Because there is a cap on his lifetime allowance for those benefits he will run out of available funds in four to eight years, depending how often he needs to receive it. This is why Allan is worried. He has contacted BC PharmaCare to find out if he will be continued on the provincial plan and not have to sell his house and everything else to stay well. PharmaCare will not commit to providing the medication as it is not automatically listed for benefit in their formulary. It is not listed because it is expensive. The medication, as applied to the average 15-month cycle of Allan's illness would be approximately $20,000. Not to worry though, he can always get the "recognized" ITP treatment, IVIG . Hospital procedures are fully covered under BC Medicare. The cost of the IVIG treatments for the same 15 months is between $120,000 to $200,000. But then there's the immunity thing. And the arthritis and, oh yeah, if he continues paying through his Blue Cross allowance he won't have any allowance left by the time he's 69 to cover medications if he becomes sick with something else. Which, given the circumstances, would seem likely.

Silly, wasteful, disgusting you say? I agree.

Allan's wife is worried too. See it's her house too and she's still working and more than a little afraid to retire because then there will really be nothing to fall back on. Personal illness isn't always just about the patient.

Allan's is just one case. If he lives to be 80 his medication will cost roughly $288,000 and there'll be no immunity problem, or arthritis. If he has to rely on IVIG, the system will willingly pay between $1.8 million and $3.6 million at 2012 prices. The blood product for the IVIG is a market drug. Its' price fluctuates just like a stock price. Most of Canada's inventory comes from the U.S. The $3.6 million could be a much higher number by 2030. But there will also be the compromised immunity and his quality of life will be much lower, so it will probably be less. If you die there's no further cost to government.

There are 1,000 to 2,000 others in BC with chronic diseases like Allan's for which the treatment is the same. For some of them the right medication is much less expensive than Allan's. I don't know how old they are but if medication works for them I think the savings could probably build a hospital, or two, or maybe help the patients of BC in some other way.

How many other cases are out there where a medication is being denied which would save the BC taxpayer millions of dollars? Why is that allowed to happen? If you have a story to tell let us know about it and we'll ask the Health Minister.

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