Since the last post in this series, The Road to Phalloplasty, Part 2: Funding Frustrations, I’ve learned that MSP has removed the 5 per year cap that applied to phalloplasty and metoidioplasty funding. While it’s not yet certain how funding will be rolled out, wait times will no longer be 10 or 20 years for funding. There are still serious problems with the surgery program but this is really good news.

Once MSP resolves the issues around assessments (see below), an aftercare team and the contract with GRS Montreal, I assume that they’ll start moving down the wait list and funding surgeries. My position on the wait list is approximately #13, which means that I could be up for funding relatively soon after funding starts, but there are a number of big hurdles that I will have to get through before I get to the funding stage.

Also see: The Road to Phalloplasty, Part 1: A Time Line of Shifting Perspectives

Assessment Runaround

Most guys going for funding will require an assessment by the surgical assessors, led by Dr. Gail Knudson. There was some question as to whether or not I would require another assessment as I had one in 2009 and requested that they evaluate me for both hysterectomy and genital reconstructive surgery. After some back and forth calls between myself, MSP and Dr. Knudson’s office, I learned that I will indeed need another assessment.

How to NOT Get An Assessment Appointment in 6 Steps

  1. Since I’ve had two letters sent by my doctor requesting funding, MSP should have already had me on a list to refer for assessment but for some reason this didn’t happen. I contacted MSP about this and they instructed me to call Dr. Knudson’s office to request the appointment.
  2. Dr. Knudson’s office instructed me to have MSP “release” my file to them.
  3. MSP told me they had no legal way of releasing my file to Dr. Knudson’s office.
  4. Dr. Knudson’s office didn’t understand this, but suggested that I get a referral to Dr. Knudson from my doctor and CC MSP on it. This was faxed on August 25.
  5. MSP sent me a letter dated September 26 instructing me to call  Dr. Knudson’s office to book an appointment. (Didn’t I already do this?)
  6. I called Dr. Knudson’s office last week and learned via answering machine message that there is no funding for assessments available until April 2015. I called again today and learned that there are at least 50 people waiting for an assessment and that I’m #15 on that wait list. They won’t book any appointments until April 2015 but assured me that they will be getting through the wait list as quickly as possible and that I will likely get a date for mid-summer 2015.

Frustrated by the lack of funding for assessments? Both MSP and Dr. Knudson’s office told me that Vancouver Coastal Health is responsible for allotting this funding, and that complaints should be lodged with VCH by calling them at 1-877-993-9199.

Out of Country Funding

ALT PhalloplastyWhile I’m in limbo waiting for an assessment, there are other things I can do to move things forward. One of the big hurdles I have yet to clear is getting out of country funding for phalloplasty. Officially, MSP is only funding surgeries that are performed at GRS Montreal with Drs. Brassard, Belanger and Bensimon. For reasons I won’t get into here, I’m not suited to the procedure that is offered at GRS Montreal. Instead, I have chosen the ALT Phalloplasty procedure and want my surgery done by Dr. Crane. (MSP is aware of several guys in BC who want surgery with Dr. Crane.) MSP has funded out of country surgeons for SRS in the past, particularly Dr. Toby Meltzer. In fact, you used to be able to choose your surgeon from a list of approved surgeons.

To access out of country funding, I have to have my doctor forward an application for coverage. The application process is described in the PDF available here. If approved, BC’s Medical Services Commission (MSC) will negotiate “reasonable and fair compensation” with Dr. Crane. I think I have a solid case for out of country funding, but I have concerns about “reasonable and fair compensation” because surgery with Dr. Crane is about twice as expensive as surgery with Dr. Brassard. So much of this is about bean counting. They may cap what they would pay Dr. Crane at the amount Dr. Brassard charges and I would be required to pay the remaining $40,000 or so. If I’m denied out of country funding completely, I will have to totally re-evaluate my situation and figure out how to self-fund, likely with a surgeon in Eastern Europe or Thailand to cut costs. I really don’t want to have to go down that road but I may have to.

Ideally I will be physically eligible to have urethroplasty done during Stage 1 of ALT Phalloplasty. (Patients with BMI over 25 are often required to have urethroplasty done during State 2.) Assuming this is the case, I could have my surgery finished in Vancouver. Dr. Bowman’s assistant confirmed to me that he would be able to do glansplasty and testicular implants as self-pay outpatient procedures. I think it makes medical sense to have the procedures done closer to home and to be closer to my surgeon if there are any complications. Despite this, I imagine MSP will balk at covering Dr. Bowman for these procedures. (Why Dr. Bowman is not being funded to perform RFF Phalloplasty in Vancouver is a whole other topic.) I’ll certainly ask them to cover but if they won’t at least I won’t have to leave the province for Stages 2 and 3, which would save a lot of money on travel expenses.

Costs & Wait Times

Unfortunately, even if MSP approves out of country funding for me, I will still have to come up with around $20,000 to cover electrolysis, travel expenses, and time off work. And that amount would not leave any wiggle room in the case of a complication. Unfortunately, I have bigger financial fish to fry before I can even start saving for this. In that sense, the estimated minimum 2 year wait to get into the OR is necessary for me to come up with the required funds.

Event Cost (CAD)
Wait Times
Surgery Assessment Covered by MSP but no funding available until April 2015. Can’t book appt. until April 2015. Currently about 50 people on the wait list for assessment. Wait times for an appt will be about 3-4 months once they start booking.
Electrolysis $80/hr – I don’t know how many sessions will be required but cost could be as much as $1000-$2000. Not covered as this is considered cosmetic. No wait times, but 1 year to complete.
Surgeon Consultation $200. Required before booking surgery date. Travel expenses are not covered, $2000. (I might be able to get a consult at the 2015 Gender Odyssey conference which would eliminate the travel expenses.) 4 month wait for appt.
Surgery Travel expenses not covered. Also need to pay for partner to be with me. $3000 for flights. At least 12-14 month wait for surgery date. (Dr. Brassard is typically 4-6 months, though CAMH in Ontario says phallo is booked up to 12 months in advance.)
Post-op Recovery Accommodations are not covered. Approximately $3000 USD for accommodations in the SF area. No per diem like US insurance typically offers so I will need additional money for food (for 2), travel in the SF area, plus post-operative supplies, $2000. (Minimum $2000 at recovery centre in Montreal.) n/a
Post-op Recovery (at home) No vacation or sick pay. Minimum $3000/month for time off. Minimum 2 months off = $6000 n/a
Possible complications, more time off, repair surgeries… $$$$ n/a
TOTALS $18,000 minimum (with no money for possible complications, more time off, repair surgeries, etc.) Earliest possible surgery date will be Summer-Fall 2016.

Fighting Fear

Even in a best case scenario, there’s yet another hurdle to get beyond: fear. After the VVF complication I experienced with hysterectomy, I swore to myself that I would not get any further surgeries if only I would heal and could pee normally again. I did heal but swearing off surgery turned out to be unrealistic–I think about it every day. This takes a lot of mental and emotional energy. Just imagine what I could accomplish if I could re-route that energy (and money) into more normal life pursuits! Phalloplasty surgery can really take a toll on a body, especially the older you are. The VVF complication puts me at higher risk of another bladder injury, especially with vaginectomy as I have adhesion between the bladder and anterior vaginal wall. I know I will face tough times in recovery. And yet I also know men who not only made it through Phalloplasty but have excelled in life since crossing that bridge. This surgery may not be easy to get through but it works, and I’m willing to fight my fears to get to that holy grail of mind-body alignment.

BC Trans Advocacy DayMSP’s abolishment of the 5 per year cap is a big step forward but serious issues remain with the accessibility, affordability and safety of how the program is currently setup. If you have concerns about this, consider donating to and/or attending the upcoming BC Trans Advocacy Day. Learn more here.