Calling it a Complaint Letter just doesn't sum it up...
Well, it's been a while. I was fortunate to finally obtain full time employment outsideof the retail sector (gasp) which has made earning money a bit easier on my spine. It has been a sad couple weeks for reasons I won't go into right now. Instead, I want to present you lovely folks with a bit of information.
See, I lost my insurance coverage in April. Problematic, as I am a 'pre-existing condition' felon, and as such, the plans available to me through my regional insurance companies are limited. And do any of them cover my most important, most expensive medication? No, because that would make sense.
So, since April I have been on a crusade to find coverage for my BuTrans patches. You think it wouldn't be hard, given that patches are more difficult to abuse and they provide long term (a week!) coverage that is delivered in even strides. None of the up and down of oral medications. BuTrans really improved my life when I began taking it, which says a lot given how my back feels now.
For a single month of coverage, I am giving up $200. That is for a single medication. Essentially 1/4 of my pay check goes towards covering all my medication. That's an awful lot given that I have to move out in January and switch cities to go to school. I will be paying rent, utilities, food, everything. I can do it, but it will be tight (and bless my lovely boyfriend who took on some of my debt so I could start improving my credit score.)
So the three major insurance companies are out. Oddly enough, Manulife will cover BuTrans, but only $500 per year. Not exactly worth the amount I'd be paying for the whole package in the first place. The rest of the companies go by the Alberta Drug Benefit Guide, which, through a snarky letter, is determined through advisory by the Canadian Expert Drug Advisory Committee.
Expert Drug Advisory Committee. Haha. You can probably imagine how I felt about that terminology. So, given the nature of the situation, and that I am almost out of ideas about who to go to or who to complain to, I sent the CEDAC a lovely letter trying to ascertain how they justified their recommendation that BuTrans not be on the Alberta Drug Benefit Guide.
The letter is as follows:
To the Canadian Expert Drug Advisory Committee
RE: September 28th, 2011 Final Recommendation for Buprenorphine Transdermal Patch
Dear Sirs and Madams,
While I am aware that I am almost a year late on appealing to your better senses regarding the decision to not recommend BuTrans Transdermal Patches for coverage by the Government of Alberta, I hope that the committee will take a moment to consider my own personal appeal. Should you feel at the outset that my appeal is not worth your time, I would remind you that until recently I had no idea the fate of my medical coverage was in the hands of a series of ‘experts’, and I have swung through so many hoops in order to find a way to pay for my BuTrans that I might be referred to as some form of circus animal.
I suffer from chronic pain. Actually, that’s not fair. I have chronic pain. It is a condition that, due to its ‘chronic’ nature, will be with me for the rest of my life. You must appreciate that for a 23 year old who has been putting up with said pain for over 11 years, the rest of my life seems like a dreadfully long time to be in pain
I was fortunate enough to have sufficient coverage for my medications right until the end of April, 2012, when my coverage was unexpectedly cancelled due to bureaucratic nonsense. That meant that not only were my BuTrans patches suddenly not covered, but neither were my morphine tablets for breakthrough pain, my Lyrica to help with nerve pain, my Baclofen for my muscle pain, or my Tecta for the ulcer that has developed due to the stress of being in pain and taking so much medication. This may all seem a bit outrageous for a 23 year old, but if you consider my position as one with severe scoliosis who has had 5 spinal surgeries and is fused from T1 to L4 (with anticipation of another surgery to fuse the remainder of my spine within the next 3 to 5 years), the amount of medication I am taking is fairly tame. After all, I had my fusion done at the age of 13 when my curve, diagnosed at 11, jumped from 30 degrees to 75 degrees, and my lung capacity was becoming diminished due to the curvature.
Five spinal surgeries. I want you to hold onto that thought for a moment. How many spinal surgeries have you had? No, this isn’t a ‘My boat is bigger than your boat’ sort of comparison. My case has been quite unique, which is unfortunate for me. What I am urging you to realize is that my pain is not describable, and unless you have suffered the exact circumstances, you can hardly claim to understand what it is like to try and get up in the morning, or suffer through the long winters that aggravate the degenerative arthritis that is swelling in my two free vertebrae. It is not an easy life I lead, but I soldier on because, hey, what else am I going to do with my time? Do I want to be one of those whiney Rig Workers who injuries his back and goes onto AISH for the rest of his life? Heck no. I have a life to lead; I have things to accomplish; I have dreams to strive towards. It is difficult to do these things when pain is a constant factor that must be taken into account before I make my daily decisions, but there you go.
Upon losing my coverage, I came into a very annoying situation for any individual with a pre-existing condition. The number of plans available are limited; this isn’t surprising given that no company wants to have money sucked from their pockets by someone who has to spend upwards of $300 a month on medication alone. Nonetheless, I have, I believe, a greater need for coverage than the average person, and yet my access to the coverage that I need for my unique situation is denied to me by your expert panel. Don’t take my snark to be a form of lack of respect. I have looked over your panel and I am fully willing to admit that you all bring something important to the group. However, do any of you bring chronic pain to the table? Do you understand the situation – I can guarantee that if you don’t suffer chronic pain, you cannot begin to comprehend what it is like living with it.
It is frustrating, it is difficult. I have no appetite because of pain, and as a consequence I have anemia and a B12 deficiency. Things are falling apart left and right and my access to the medication that I require is denied to me because why? It’s too expensive? That is precisely why it should be covered. BuTrans will not remain on the market if it cannot be sold. On the other hand, should it be covered, even a tiny bit (50 dollars would make a world of difference), then the market will adjust. BuTrans will become a favorite with physicians who identify the fact that it is A) a patch and thereby difficult to abuse and B) provides consistent, long term coverage to be a benefit over oral drugs. The more it is prescribed, the more quickly Purdue Pharma will recognize its importance and be able to lower the price. Think of it like buying a used car that has been soup up. The car can be amazingly efficient. There can be absolutely nothing wrong with it thanks to the work of the previous owner, but you get to benefit because it has been around the block.
The fact of the matter is that a decision was made by your expert panel, and now it is time to reexamine the facts that are being presented you. I am asking, practically begging, to present my case for BuTrans before your expert council. As one who has finally found a medication worth my time, that makes daily life bearable, I deserve the chance to present what I feel is a strong case for the coverage of BuTrans before you and anyone else who might have vested interest in the success or failure of it as a product. You have made a decision not for yourselves, as you are not the ones who use it, but you have made a decision for patients everywhere that have benefited from the use of BuTrans. In that regard, you owe me the chance to state my case before you. You owe me, because you have made a decision that is affecting my life in a gross and unacceptable way. You owe me, because my future is hinged on my ability to save money, work, go to school and do all this while functioning with chronic pain. You owe me because you made a decision that affects me, and because of that, you owe me the chance to stand before you and present my case. Besides, two of your members weren’t present at the final vote, which seems to me an unacceptable situation when deciding whether to recommend a medication for coverage or not.
I look forward to speaking to you, as a panel of experts, in person and soon. This situation must be remedied. You hold the lives of individuals just like me in your hands, and it is not fair for you to pull the strings without hearing first-hand how your decision will affect the lives of others.
Sincerely,
Kathleen A. Sawisky.
What is humourous about this whole situation is that when I sent my original complaint letter to the Alberta Government (I do love me a good complaint letter) the response I received said this:
For the different government-sponsored prescription drug programs, as is the case with any publicly funded program, the Government of Alberta must ensure that public funds are spent as wisely and effectively as possible, in order to maximize the benefits and make them available to as many Albertans as possible.
I know there is a huge international scene in our family, so for those of you who don't know, there has been a huge backlash about mispent funds and severance packages being dolled out to these Health Region Officials who have buggered up and are fired but rewarded with massive amounts of money thrown at them as they leave the office. I was annoyed with this little bit, and the fact that they ended the email with "Wishing you good health". So I responded with this: Dear Sir and/or Madam,
Are you kidding me? The Government of Alberta must ensure that public funds are spent as wisely and effectively as possible, in order to maximize the benefits and make them available to as many Albertans as possible. Are you actually joking? My tax money is going towards outrageous severance packages for morons who do jackshit, and you're telling me that public funds have to be spent wisely?
Where is my severance fund? How dare anyone within the Government have the gall to say something so ludacrious given the attention that has been placed on the moronic handling of funds within the Alberta Health System. And how dare you leave the fate of people's lives and their capacity to live in the hands of a committee who is probably getting paid the same outrageous amounts as Mr. I Want A Bottle of Champagne With My Frite-Tar-Tar Merali. Don't even get me started on the Stephen Ducket fiasco.
The failure to format the system to the needs of the people that use it is a disgusting show of self-entitlement and self-importance developed by the people who want to drive flashy sports cars and spit on the little people.
Further more, your little comment at the end about my good health just proves how little the Government of Alberta cares about its people. Had you, or the writer of the previous response (whoever that may be) had even the smallest amount of tact or empathy, you would realize that I don't have good health and that is the damn problem. I don't have good health because the wait times for clinics is outragoues because you can't afford to hire one or two more doctors. I don't have good health because you leave my ability to afford my medication in the hands of people who will never have to use it. I don't have good health because the Government of Alberta has done everything in its power to prevent me from receiving the care that I need to live a reasonable existence. I don't have good health, plain and simple. And my ability to access the resources that might improve my lifestyle are denied to me because the Government of Alberta has deemed that those resources aren't worth putting a few extra dollars into.
God help you if you ever need to take advantage of more than the average medical options available in Alberta. Maybe then you'll realize how pathetic all these excuses you've thrown at me really are. Not my finest moment, but I admit that I feel much better knowing that I said it. Someone has to say it. Legally they have to respond within 3 days. We shall see. Meanwhile, my good doctor is bantering with the marketing department for Purdue Pharma, trying to convince them that I am a long-term customer, and offering me a discount of BuTrans would be a good move for them. Fingers crossed. Until then, I am at the mercy of my bank account.
See, I lost my insurance coverage in April. Problematic, as I am a 'pre-existing condition' felon, and as such, the plans available to me through my regional insurance companies are limited. And do any of them cover my most important, most expensive medication? No, because that would make sense.
So, since April I have been on a crusade to find coverage for my BuTrans patches. You think it wouldn't be hard, given that patches are more difficult to abuse and they provide long term (a week!) coverage that is delivered in even strides. None of the up and down of oral medications. BuTrans really improved my life when I began taking it, which says a lot given how my back feels now.
For a single month of coverage, I am giving up $200. That is for a single medication. Essentially 1/4 of my pay check goes towards covering all my medication. That's an awful lot given that I have to move out in January and switch cities to go to school. I will be paying rent, utilities, food, everything. I can do it, but it will be tight (and bless my lovely boyfriend who took on some of my debt so I could start improving my credit score.)
So the three major insurance companies are out. Oddly enough, Manulife will cover BuTrans, but only $500 per year. Not exactly worth the amount I'd be paying for the whole package in the first place. The rest of the companies go by the Alberta Drug Benefit Guide, which, through a snarky letter, is determined through advisory by the Canadian Expert Drug Advisory Committee.
Expert Drug Advisory Committee. Haha. You can probably imagine how I felt about that terminology. So, given the nature of the situation, and that I am almost out of ideas about who to go to or who to complain to, I sent the CEDAC a lovely letter trying to ascertain how they justified their recommendation that BuTrans not be on the Alberta Drug Benefit Guide.
The letter is as follows:
To the Canadian Expert Drug Advisory Committee
RE: September 28th, 2011 Final Recommendation for Buprenorphine Transdermal Patch
Dear Sirs and Madams,
While I am aware that I am almost a year late on appealing to your better senses regarding the decision to not recommend BuTrans Transdermal Patches for coverage by the Government of Alberta, I hope that the committee will take a moment to consider my own personal appeal. Should you feel at the outset that my appeal is not worth your time, I would remind you that until recently I had no idea the fate of my medical coverage was in the hands of a series of ‘experts’, and I have swung through so many hoops in order to find a way to pay for my BuTrans that I might be referred to as some form of circus animal.
I suffer from chronic pain. Actually, that’s not fair. I have chronic pain. It is a condition that, due to its ‘chronic’ nature, will be with me for the rest of my life. You must appreciate that for a 23 year old who has been putting up with said pain for over 11 years, the rest of my life seems like a dreadfully long time to be in pain
I was fortunate enough to have sufficient coverage for my medications right until the end of April, 2012, when my coverage was unexpectedly cancelled due to bureaucratic nonsense. That meant that not only were my BuTrans patches suddenly not covered, but neither were my morphine tablets for breakthrough pain, my Lyrica to help with nerve pain, my Baclofen for my muscle pain, or my Tecta for the ulcer that has developed due to the stress of being in pain and taking so much medication. This may all seem a bit outrageous for a 23 year old, but if you consider my position as one with severe scoliosis who has had 5 spinal surgeries and is fused from T1 to L4 (with anticipation of another surgery to fuse the remainder of my spine within the next 3 to 5 years), the amount of medication I am taking is fairly tame. After all, I had my fusion done at the age of 13 when my curve, diagnosed at 11, jumped from 30 degrees to 75 degrees, and my lung capacity was becoming diminished due to the curvature.
Five spinal surgeries. I want you to hold onto that thought for a moment. How many spinal surgeries have you had? No, this isn’t a ‘My boat is bigger than your boat’ sort of comparison. My case has been quite unique, which is unfortunate for me. What I am urging you to realize is that my pain is not describable, and unless you have suffered the exact circumstances, you can hardly claim to understand what it is like to try and get up in the morning, or suffer through the long winters that aggravate the degenerative arthritis that is swelling in my two free vertebrae. It is not an easy life I lead, but I soldier on because, hey, what else am I going to do with my time? Do I want to be one of those whiney Rig Workers who injuries his back and goes onto AISH for the rest of his life? Heck no. I have a life to lead; I have things to accomplish; I have dreams to strive towards. It is difficult to do these things when pain is a constant factor that must be taken into account before I make my daily decisions, but there you go.
Upon losing my coverage, I came into a very annoying situation for any individual with a pre-existing condition. The number of plans available are limited; this isn’t surprising given that no company wants to have money sucked from their pockets by someone who has to spend upwards of $300 a month on medication alone. Nonetheless, I have, I believe, a greater need for coverage than the average person, and yet my access to the coverage that I need for my unique situation is denied to me by your expert panel. Don’t take my snark to be a form of lack of respect. I have looked over your panel and I am fully willing to admit that you all bring something important to the group. However, do any of you bring chronic pain to the table? Do you understand the situation – I can guarantee that if you don’t suffer chronic pain, you cannot begin to comprehend what it is like living with it.
It is frustrating, it is difficult. I have no appetite because of pain, and as a consequence I have anemia and a B12 deficiency. Things are falling apart left and right and my access to the medication that I require is denied to me because why? It’s too expensive? That is precisely why it should be covered. BuTrans will not remain on the market if it cannot be sold. On the other hand, should it be covered, even a tiny bit (50 dollars would make a world of difference), then the market will adjust. BuTrans will become a favorite with physicians who identify the fact that it is A) a patch and thereby difficult to abuse and B) provides consistent, long term coverage to be a benefit over oral drugs. The more it is prescribed, the more quickly Purdue Pharma will recognize its importance and be able to lower the price. Think of it like buying a used car that has been soup up. The car can be amazingly efficient. There can be absolutely nothing wrong with it thanks to the work of the previous owner, but you get to benefit because it has been around the block.
The fact of the matter is that a decision was made by your expert panel, and now it is time to reexamine the facts that are being presented you. I am asking, practically begging, to present my case for BuTrans before your expert council. As one who has finally found a medication worth my time, that makes daily life bearable, I deserve the chance to present what I feel is a strong case for the coverage of BuTrans before you and anyone else who might have vested interest in the success or failure of it as a product. You have made a decision not for yourselves, as you are not the ones who use it, but you have made a decision for patients everywhere that have benefited from the use of BuTrans. In that regard, you owe me the chance to state my case before you. You owe me, because you have made a decision that is affecting my life in a gross and unacceptable way. You owe me, because my future is hinged on my ability to save money, work, go to school and do all this while functioning with chronic pain. You owe me because you made a decision that affects me, and because of that, you owe me the chance to stand before you and present my case. Besides, two of your members weren’t present at the final vote, which seems to me an unacceptable situation when deciding whether to recommend a medication for coverage or not.
I look forward to speaking to you, as a panel of experts, in person and soon. This situation must be remedied. You hold the lives of individuals just like me in your hands, and it is not fair for you to pull the strings without hearing first-hand how your decision will affect the lives of others.
Sincerely,
Kathleen A. Sawisky.
What is humourous about this whole situation is that when I sent my original complaint letter to the Alberta Government (I do love me a good complaint letter) the response I received said this:
For the different government-sponsored prescription drug programs, as is the case with any publicly funded program, the Government of Alberta must ensure that public funds are spent as wisely and effectively as possible, in order to maximize the benefits and make them available to as many Albertans as possible.
I know there is a huge international scene in our family, so for those of you who don't know, there has been a huge backlash about mispent funds and severance packages being dolled out to these Health Region Officials who have buggered up and are fired but rewarded with massive amounts of money thrown at them as they leave the office. I was annoyed with this little bit, and the fact that they ended the email with "Wishing you good health". So I responded with this: Dear Sir and/or Madam,
Are you kidding me? The Government of Alberta must ensure that public funds are spent as wisely and effectively as possible, in order to maximize the benefits and make them available to as many Albertans as possible. Are you actually joking? My tax money is going towards outrageous severance packages for morons who do jackshit, and you're telling me that public funds have to be spent wisely?
Where is my severance fund? How dare anyone within the Government have the gall to say something so ludacrious given the attention that has been placed on the moronic handling of funds within the Alberta Health System. And how dare you leave the fate of people's lives and their capacity to live in the hands of a committee who is probably getting paid the same outrageous amounts as Mr. I Want A Bottle of Champagne With My Frite-Tar-Tar Merali. Don't even get me started on the Stephen Ducket fiasco.
The failure to format the system to the needs of the people that use it is a disgusting show of self-entitlement and self-importance developed by the people who want to drive flashy sports cars and spit on the little people.
Further more, your little comment at the end about my good health just proves how little the Government of Alberta cares about its people. Had you, or the writer of the previous response (whoever that may be) had even the smallest amount of tact or empathy, you would realize that I don't have good health and that is the damn problem. I don't have good health because the wait times for clinics is outragoues because you can't afford to hire one or two more doctors. I don't have good health because you leave my ability to afford my medication in the hands of people who will never have to use it. I don't have good health because the Government of Alberta has done everything in its power to prevent me from receiving the care that I need to live a reasonable existence. I don't have good health, plain and simple. And my ability to access the resources that might improve my lifestyle are denied to me because the Government of Alberta has deemed that those resources aren't worth putting a few extra dollars into.
God help you if you ever need to take advantage of more than the average medical options available in Alberta. Maybe then you'll realize how pathetic all these excuses you've thrown at me really are. Not my finest moment, but I admit that I feel much better knowing that I said it. Someone has to say it. Legally they have to respond within 3 days. We shall see. Meanwhile, my good doctor is bantering with the marketing department for Purdue Pharma, trying to convince them that I am a long-term customer, and offering me a discount of BuTrans would be a good move for them. Fingers crossed. Until then, I am at the mercy of my bank account.
