Something to get off my chest
I don't think that there is a single transition process, and I don't think there is a single way to transition. I don't think all transmasculine people need/want/desire chest surgery. I am also very clear that for some transmasculine people chest surgery is not a want or desire, but a need and a medical necessity. I want individuals to be able to make their own intensely personal decisions about what is best for them, about how, and when and where and frankly about what. I don't want money to be a barrier to access - I do think it is appropriate OHIP cover transition related surgeries, and that the current coverage is woefully inadequate. That said, as I go about the process of making my own personal decisions, about how to live in this body, it's clear to me that some of the intensely personal decisions I am making about my skin, and the shape of my skin may have the potential to impact others, and so I need to have a broader conversation, in community. This is a starting point, an opening, a beginning. Welcome to the work in progress. Come get involved at the ground floor.
*** Warning, the following blog post discusses surgical options and OHIP coverage for transmasculine people in Ontario in general, and my own experiences in particular. If you don't want to read this (I'm looking at you mum and dad) you should stop reading now. The internet is full of other things you can look at - go find something more to your liking. ***
The personal
Last summer, I made the decision that I wanted chest surgery. I've been binding my chest for, well, longer than I can clearly remember - maybe 15 years? I've used sports bras, and packing tape, tensor bandages, duct tape and compression shirts. I started binding as constantly shrugging my shoulders forward and curving my back to hide my chest was causing constant back pain. I've bound for a long time, and for me, last summer was the last straw. It was hot last summer, and always wearing a binder meant always wearing an extra non-breathable layer, and going outside was highly unpleasant. I was also finding that the combination of heat and asthma and compression shirt made bicycling very difficult, and this really matters to me. For me, the current shape of my chest began to seriously impact my quality of life. I decided I needed chest surgery.
The OHIP Approval Process
I had previously been a client at the Gender Identity Clinic at CAMH, and in July 2012 called them back to say that I wanted to return1. I was told that as a returning client I would not have to wait and could have the next available appointment - a little over a month later. I was told this was a surgery approval appointment. It was not. When the letter I expected did not arrive, I called them. I called them again. I kept calling. Meanwhile they sent a letter containing my confidential medical information to a neighbour, who opened it and then passed the opened letter on to me. Yes, that felt about as great as that sounds. I was finally given an actual surgery approval meeting on November 9th and 12th. While I was told in those meetings that things looked good, I did not receive the official letter that I had been approved until January 22nd, which for those counting is ten weeks later.
Where this starts to involve community
Throughout the approval process I tried to get answers about surgical options. Information about what is covered, information about procedures, information about post-surgical expectations, information about what I am expected to pay for. Ironically, part of the CAMH assessment involves needing to prove you understand the surgical procedures, but that information is not offered anywhere official. There is no centralized list. It's all word of mouth and community knowledge, and currently there is no central repository, Re-listing still is relatively recent, and perhaps the information has just not been gathered yet. I'm ready to take that on - if you are interested in that let me know.
What I can parse out, is that if you are approved and referred to Dr. Maud Bélanger in Montreal (Dr. Bélanger is now performing surgeries, this is Dr. Brassard's clinic) you have to pay for travel, but after that all costs are covered, including a mastectomy, chest contouring, and staying in their facility. When I wrote to OHIP about this asking why patients were effectively forced to go to Montreal, OHIP claimed:
There is no requirement that patients attend Dr. Brassard's clinic for OHIP insured
SRS. In order to have the surgery done by the physician in Ontario, you will require
a referral from CAMH to the Ontario physician. This will confirm for the physician what
has been recommended and approved, and therefore covered under OHIP.2
While CAMH would refer me to the Montreal clinic, I don't meet the clinic's own internal requirements for surgery. Additionally, they've been known to turn down fat guys, and do a surgical procedure that means no nipple sensation ever again.
I got a referral to Dr. Marc DuPéré, a Toronto physician, who a friend spoke highly of. Dr. DuPéré had performed the friend's surgery and the friend felt good about his work. The friend had paid about $6000 out of pocket during the period when OHIP de-listed SRS surgeries. I had an initial consult this week, and Dr. DuPéré is lovely in person, but he will only perform a technique I do not want (no nipple sensation afterwards) and with the OHIP coverage I would be expected to pay an additional $6780.00. That's right, the government says that I need this surgery, but to have it here in Toronto, covered by OHIP I would have to pay an additional $6780.00
Another friend recently had surgery in Mississauga with Dr. Hugh McLean, who does not accept OHIP (apparently it is too much of a hassle), and paid $6780, although Dr. McLean is now apparently charging $7400. He also performs the surgery that is likely to result in no nipple sensation after surgery.
Montreal, Ontario, why the different level of coverage for Ontario patients?
When I have asked both at CAMH and at the Trans Health Connection at Rainbow Health Ontario why OHIP would cover a full procedure at Dr. Brassard's clinic in Montreal, and only the mastectomy (not including access to an operating room, or an anaesthesiologist, or a nurse) in Ontario, no-one has an answer. The direction from CAMH is "don't make to much noise or you'll wreck it for everyone" and seems to be based in a guess that OHIP simply does not know what they are paying for in Montreal. I've heard speculation that perhaps OHIP gets a special bulk rate there, but no actual answers. I've also been told by staff at CAMH that OHIP does not cover any reconstruction for people who have had a mastectomy to remove cancer - however Dr. DuPéré claims this is not true. He says that's true if you have it done in a private clinic, but if you have it done in a hospital, it's covered. The problem with the "don't wreck it for everyone" line is that it's not working for everyone. If you can't travel to Montreal, it does not work for you. If you are fat it does not work for you, if you want a chance at having nipple sensation afterwards it does not work for you. If the cost of getting to Montreal is prohibitive, it does not work for you. The current option works for some, while the government claims they are offering this needed service.
The challenge of that statement is that my actions here might well have implications for other guys who need access to surgery. I been having some conversations off an on about this for a few months now, and it's clear to me that we need to be organizing to create a better system. When OHIP first re-listed surgeries the word was wait, we're about to announce a better access model. Many people were enthusiastic about the model offered by Vancouver Costal Health, which includes offering services remotely, because hello, not all trans people live in major cities. For quite some time Rainbow Health Ontario would say things along the lines of "we're almost ready to announce multiple access points for care" but the multiple access points never came.
So, if you are trans* in Ontario, it remains that the only point of care is the Gender Identity Clinic at CAMH in Toronto. It remains that for transmasculine people the only fully covered chest surgery option is in Montreal. I am actually interested in making this better for all of us. I want to share information, I want to make better use of the needs identified in the TransPulse data. We know that forcing people who need surgery to live without it is dangerous, and in many cases life threatening, but the current system asks people to do just that, or forces people to take "solutions" that are neither client centred nor based on the best surgical techniques available. I want to have a provincial conversation that does not prioritize the needs of Torontonians. I want to make links and build allegiences with others who are similarly left with out good appropriate options. At the moment this feels like transwomen and breast cancer survivors. I want a broad based coalition, where we all demand that we all get the care we need.
The system is broken, and we need better. We deserve better. Please, lets start conversations about how to do that. And yes, I'm saying lets start talking about how we do that. I can see the need. I don't yet quite know how to meet it, so more eyes, and more input are required.
1 I was a "patient" at the clinic shortly after surgery was de-listed and went mostly on the gamble that surgery would be re-listed and that CAMH would remain the access point. I basically wanted to be ready to go when this happened. I stopped going when it became clear to me that they had nothing to offer me.
2 Quoting a letter from Susan Pinney, A/Manager, Fee for Service Unit, Health Services Branch, dated Nov. 22 2012. personal correspondence.
*** Warning, the following blog post discusses surgical options and OHIP coverage for transmasculine people in Ontario in general, and my own experiences in particular. If you don't want to read this (I'm looking at you mum and dad) you should stop reading now. The internet is full of other things you can look at - go find something more to your liking. ***
The personal
Last summer, I made the decision that I wanted chest surgery. I've been binding my chest for, well, longer than I can clearly remember - maybe 15 years? I've used sports bras, and packing tape, tensor bandages, duct tape and compression shirts. I started binding as constantly shrugging my shoulders forward and curving my back to hide my chest was causing constant back pain. I've bound for a long time, and for me, last summer was the last straw. It was hot last summer, and always wearing a binder meant always wearing an extra non-breathable layer, and going outside was highly unpleasant. I was also finding that the combination of heat and asthma and compression shirt made bicycling very difficult, and this really matters to me. For me, the current shape of my chest began to seriously impact my quality of life. I decided I needed chest surgery.
The OHIP Approval Process
I had previously been a client at the Gender Identity Clinic at CAMH, and in July 2012 called them back to say that I wanted to return1. I was told that as a returning client I would not have to wait and could have the next available appointment - a little over a month later. I was told this was a surgery approval appointment. It was not. When the letter I expected did not arrive, I called them. I called them again. I kept calling. Meanwhile they sent a letter containing my confidential medical information to a neighbour, who opened it and then passed the opened letter on to me. Yes, that felt about as great as that sounds. I was finally given an actual surgery approval meeting on November 9th and 12th. While I was told in those meetings that things looked good, I did not receive the official letter that I had been approved until January 22nd, which for those counting is ten weeks later.
Where this starts to involve community
Throughout the approval process I tried to get answers about surgical options. Information about what is covered, information about procedures, information about post-surgical expectations, information about what I am expected to pay for. Ironically, part of the CAMH assessment involves needing to prove you understand the surgical procedures, but that information is not offered anywhere official. There is no centralized list. It's all word of mouth and community knowledge, and currently there is no central repository, Re-listing still is relatively recent, and perhaps the information has just not been gathered yet. I'm ready to take that on - if you are interested in that let me know.
What I can parse out, is that if you are approved and referred to Dr. Maud Bélanger in Montreal (Dr. Bélanger is now performing surgeries, this is Dr. Brassard's clinic) you have to pay for travel, but after that all costs are covered, including a mastectomy, chest contouring, and staying in their facility. When I wrote to OHIP about this asking why patients were effectively forced to go to Montreal, OHIP claimed:
There is no requirement that patients attend Dr. Brassard's clinic for OHIP insured
SRS. In order to have the surgery done by the physician in Ontario, you will require
a referral from CAMH to the Ontario physician. This will confirm for the physician what
has been recommended and approved, and therefore covered under OHIP.2
While CAMH would refer me to the Montreal clinic, I don't meet the clinic's own internal requirements for surgery. Additionally, they've been known to turn down fat guys, and do a surgical procedure that means no nipple sensation ever again.
I got a referral to Dr. Marc DuPéré, a Toronto physician, who a friend spoke highly of. Dr. DuPéré had performed the friend's surgery and the friend felt good about his work. The friend had paid about $6000 out of pocket during the period when OHIP de-listed SRS surgeries. I had an initial consult this week, and Dr. DuPéré is lovely in person, but he will only perform a technique I do not want (no nipple sensation afterwards) and with the OHIP coverage I would be expected to pay an additional $6780.00. That's right, the government says that I need this surgery, but to have it here in Toronto, covered by OHIP I would have to pay an additional $6780.00
Another friend recently had surgery in Mississauga with Dr. Hugh McLean, who does not accept OHIP (apparently it is too much of a hassle), and paid $6780, although Dr. McLean is now apparently charging $7400. He also performs the surgery that is likely to result in no nipple sensation after surgery.
Montreal, Ontario, why the different level of coverage for Ontario patients?
When I have asked both at CAMH and at the Trans Health Connection at Rainbow Health Ontario why OHIP would cover a full procedure at Dr. Brassard's clinic in Montreal, and only the mastectomy (not including access to an operating room, or an anaesthesiologist, or a nurse) in Ontario, no-one has an answer. The direction from CAMH is "don't make to much noise or you'll wreck it for everyone" and seems to be based in a guess that OHIP simply does not know what they are paying for in Montreal. I've heard speculation that perhaps OHIP gets a special bulk rate there, but no actual answers. I've also been told by staff at CAMH that OHIP does not cover any reconstruction for people who have had a mastectomy to remove cancer - however Dr. DuPéré claims this is not true. He says that's true if you have it done in a private clinic, but if you have it done in a hospital, it's covered. The problem with the "don't wreck it for everyone" line is that it's not working for everyone. If you can't travel to Montreal, it does not work for you. If you are fat it does not work for you, if you want a chance at having nipple sensation afterwards it does not work for you. If the cost of getting to Montreal is prohibitive, it does not work for you. The current option works for some, while the government claims they are offering this needed service.
The challenge of that statement is that my actions here might well have implications for other guys who need access to surgery. I been having some conversations off an on about this for a few months now, and it's clear to me that we need to be organizing to create a better system. When OHIP first re-listed surgeries the word was wait, we're about to announce a better access model. Many people were enthusiastic about the model offered by Vancouver Costal Health, which includes offering services remotely, because hello, not all trans people live in major cities. For quite some time Rainbow Health Ontario would say things along the lines of "we're almost ready to announce multiple access points for care" but the multiple access points never came.
So, if you are trans* in Ontario, it remains that the only point of care is the Gender Identity Clinic at CAMH in Toronto. It remains that for transmasculine people the only fully covered chest surgery option is in Montreal. I am actually interested in making this better for all of us. I want to share information, I want to make better use of the needs identified in the TransPulse data. We know that forcing people who need surgery to live without it is dangerous, and in many cases life threatening, but the current system asks people to do just that, or forces people to take "solutions" that are neither client centred nor based on the best surgical techniques available. I want to have a provincial conversation that does not prioritize the needs of Torontonians. I want to make links and build allegiences with others who are similarly left with out good appropriate options. At the moment this feels like transwomen and breast cancer survivors. I want a broad based coalition, where we all demand that we all get the care we need.
The system is broken, and we need better. We deserve better. Please, lets start conversations about how to do that. And yes, I'm saying lets start talking about how we do that. I can see the need. I don't yet quite know how to meet it, so more eyes, and more input are required.
1 I was a "patient" at the clinic shortly after surgery was de-listed and went mostly on the gamble that surgery would be re-listed and that CAMH would remain the access point. I basically wanted to be ready to go when this happened. I stopped going when it became clear to me that they had nothing to offer me.
2 Quoting a letter from Susan Pinney, A/Manager, Fee for Service Unit, Health Services Branch, dated Nov. 22 2012. personal correspondence.