Below the fold…
Last weekend, I finally managed to bring my D&D campaign to a close. I started conceptualizing the story that became this campaign close to ten years ago, in a different city, with different ambitions. It was part of my first serious attempt to be a Dungeon Master, after two previous games that devolved into high-powered absurdity. It evolved hand-in-hand with the expansion of my campaign setting, a homemade version of the detailed worlds published for reference and inspiration. The end of this long-running game gives me a lot to think about, including what to do with all this extra free time. Somehow, I think I’ll find something.
Below the fold…
Once again I am left in a position of asking for help to cover what is an essential medication for the management of my symptoms. As many of you have doubtless figured out by now, I use medical marijuana to treat my Crohn’s disease.
The medication acts on two fronts. The first is symptoms management where it relieves the severe pain and nausea caused by my conditions. The second is by making the other medication I am on, more effective.
I’ve mentioned time and time again that it can be expensive, but for once, I am going to share specifics.
Every once in a while, someone will complain about the fact that I ask for monetary assistance. I get advice on how to “save money” which often ignores the reality of my situation.
So just how much does my medication cost?
Medical Marijuana ranges from $6 per gram to $12 per gram. Thanks to compassionate pricing, I get a 20% discount with my dispensary. I do my best to buy the cheap strains as much as possible, but often those strains are not the ones that work for my conditions.
More frequently I end up needing the strains that cost me $7.60 per gram.
My prescription is 2 grams per day.
That adds up to at least $465 in an average 30 day month. If the cheaper strains are not available, that total can go up to $600 per month. The choice literally becomes, do I buy groceries or do I buy my meds. Frequently what happens is I use the money we used to pay down our debt on the credit cards, to then purchase my medication, in effect never actually making any improvement in the debt situation. The remainder comes from the overdraft protection, which in turn can cost us up to $5 for each day that the account in overdrawn.
Some months it is a matter of deciding which is more important, my meds or groceries.
Medical Marijuana has not been covered by Trillium or ODSP since the rules surrounding prescriptions were changed by Harper’s government. It is also not covered by any other insurance, even if I wasn’t prevented from accessing other forms of insurance due to my “pre-existing conditions”. This despite the fact that it is a known treatment for chronic pain, chronic nausea, and a variety of conditions.
Every month means an overwhelming amount of anxiety as I try desperately to come up with some way to get extra money, so that maybe just this once, we don’t overdraw and can start the month without being in the red. Overdraft protection is supposed to be a failsafe, not a line of credit. The anxiety of course makes my conditions worse, increasing pain, increasing nausea, increasing blood loss, to the point where medication becomes even more of a priority.
It’s a desperate circle, and one I hope someday to be able to escape. But in the meantime, I ask for help.
Since getting involved with atheist activism, which was my first introduction to online social justice circles, I have seen people make an effort to drop racism language, cissexist language, sexist language, etc. from their vocabularies. Yes not all and not nearly enough, but still there was a visible segment of the community that made this effort.
The same cannot be said for the effort people put in to remove ableist vocabulary from their language. Sure some of the big ones like R*t*rd that many of us have known since childhood was a slur, but st*pid, Id*ot, Cr*t*n, M*r*n, l*me, Cr*zy, for those I haven’t seen as much effort, even from people who claim to care. It’s disheartening.
Every day I scroll through my newsfeed and I’m bombarded by these words from people who are my friends, who claim to care about me and people like me.
Do you really think we don’t notice?
Many of us are just too exhausted to have the same argument again and again. When many of us struggle to survive in a world that in some cases is actively trying to kill us, often through neglect (think flashing lights, they are fucking everywhere!!), it can feel like too much to tell yet another person: “Hey actually that’s ableist.”
To the Right Honourable Prime Minister Justin Trudeau and to the Honourable Premier Kathleen Wynne:
My name is Ania Bula, I am a citizen of Canada living in Ottawa, and currently a recipient of Ontario Disability Support Payments (ODSP). I am also a registered medical marijuana patient.
I receive this prescription to help me manage the symptoms of moderate-severe Crohn’s disease. As a quick background: Crohn’s Disease is an autoimmune condition that affects my digestive system. Symptoms can take place anywhere from the mouth down to the anus. This condition causes my digestive system to become inflamed and swollen, which in turn causes it to be very delicate. During flares, the inflammation can be so bad that the lightest pressure causes the membranes to tear and ulcerate, causing blood loss. The inflammation can also cause blockages in my intestines that need to be operated, a loss of digestive ability leading to malnutrition, as well as causing severe pain, nausea, vomiting, and diarrhea. Needless to say, it is not a pleasant condition to have.
I have been treated for Crohn’s, in addition to other conditions, for close to a decade. The primary medication I receive is an immune suppressant by IV once every 6 weeks.
The prescription marijuana serves two purposes. The first is symptom management. Marijuana helps with pain and nausea control. Without it, many days are too painful for me to function appropriately. I cannot get out of bed, I cannot keep food down, I become malnourished and have to be admitted to hospital. Once there I am usually prescribe harsh steroids which, while helping minimize the flare, also causes damage to bones and joints already ravaged by this and other conditions.
Because I can take marijuana in ways other than through oral ingestion, it makes the pain treatment more effective. Frequently, the swelling in my intestines prevents more severe oral medications like dilaudid, Percocet, morphine, and others, not to work effectively. Moreover, the side effects of opiates can often mirror some of the same symptoms I am already dealing with like nausea.
I take small doses of marijuana throughout the day, which helps me get work done: either paid work like writing, or even just domestic chores like making dinner. For me, marijuana has been the thing that has helped the most when it comes to regaining some semblance of normalcy when it comes to quality of life. It has kept me out of the hospital on more than one occasion. It has helped me feel human again, when many of my conditions conspire to do the opposite.
In addition to symptom management however, marijuana also helps actually treat my condition. Studies have shown promising results when it comes to difficult cases such as mine. Many patients who have not responded to conventional therapies alone, have managed to go into remission when given the added treatment of marijuana.
Why am I telling you all this.
Recently, under the direction of Prime Minister Trudeau, the Canadian government has started the process towards legalization of cannabis. While this news makes me happy, there is a much more pressing issue facing patients that I believe could be addresses even before legalization can officially happen.
Medical Marijuana, ever since the new rules put forth by the Harper Government, is not covered by insurance. Not even that provided by ODSP.
The cost of marijuana is high. The standard dose of 1 gram per day can run you about $10 per day. For those of us with larger prescriptions, the associated cost is even higher. Often patients are forced to choose worse or less helpful strains in order to deal with the cost. My prescription can cost me up to $600 a month. As someone who lives on a fixed income from ODSP, that number is far beyond what I can reasonably afford. As a result I have had to go into debt to get my medication, borrow money from friends, ask strangers on the internet for monetary help, and sometimes make the decisions between groceries or my meds.
This is not a decision that should ever have to be faced by patients. Even if the mmj was only for symptom management, it would still be an essential part of my treatment. The increased stress surrounding the ability to get my medication also has negative side effects on my conditions itself, which are sensitive to anxiety and stress.
I am asking you to please help patients like me. To work to make our medicine a help and not an additional burden. Healthcare is, I believe, an integral Canadian value. We’ve built a national identity out of being the country that cares for its sick, and I am asking you to please continue that tradition. Help us get our meds covered. Help us not have to struggle to get treatment when already living on an extremely fixed income.
Writer of Young, Sick, and Invisible
I’m currently a candidate for permanent residency in Canada. It’ll be a while before the Canadian authorities make their decision, and then a bit longer while I come up with ~$500 that Canada likes to extract from its immigrants for the privilege of the legal right to remain even after their stay is approved, on top of a similar expense required to even apply. I’ll have to sit for some sort of interview in between, most likely, so that an official fundamentally unqualified to make this determination can decide if my relationship to Ania is genuine. I haven’t yet determined whether I’ll have to make that appearance while crossdressing, given that my legal paperwork is all under the old name, but signs point in that direction. I’m still figuring out whether it’s a good idea to start moving on my legal name change now, or if that would complicate my application. Immigrating while transgender is a dreadful experience overall.
Eventually, I’ll also have to renounce my US citizenship, because even having US citizenship is a liability for US citizens relocated long-term elsewhere. The United States is unusual in two respects: it is illegal to enter the United States with a non-US passport if one is a US citizen, and the US extends its financial fingers into the doings of US citizens living abroad. Much has been written about the annoyance that these rules impose on people even approaching middle-class, despite being ostensibly aimed at drawing back some money filched by jet-setting CEOs and parked elsewhere in the world. Worse, because US citizenship is transmitted by birth to at least one American parent or on American soil, if I have children, anything in their names is also subject to US scrutiny and US taxes, when they’ll have no personal connection to “the old country” at all. Relative poverty has kept me off of the IRS and Treasury Department’s radar, but I’ll still probably have to answer for my invisibility once my income becomes real.