On January 6th I emailed my Neurologist to confirm I wanted to switch my MS Drugs. This morning I got the notification that while the insurance paperwork wasn’t complete, the drug company was covering my drugs anyway.
I had a 2-week window that I could do 5 days worth of infusions required. There was no way I could stop work and school, but I could stop work. Ms. Fab arranged to work from my house so that she could take care of me (the side effects can be awful). I started the process 60 days in advance.
For 55 days I have been nagging some combination of a neurologist, an MS nurse, an insurance company and a drug company. Forms upon forms upon forms. Blood work. An EKG. A TB test. At least a phone call or an email a day. It was 21 days from the time I sent the Neuro the forms until his office sent them to the MS Nurse. Another week of phoning the MS nurse every day. The neurologist sent the insurance forms late and then to the wrong number. My neurologist failed to actually explain why the switch was required – apparently, he felt that “pt needs new drugs” was sufficient justification for $65,000 worth of drugs. Oddly my insurance company disagreed. They asked for more justification (or any justification). It took another week for him to write a 2 sentence letter.
There was the day that I called the MS nurse and my broker. My MS nurse to figure out if I could pay for the drugs on my own and my broker to find out if I had enough money in my RSPs to do it. The MS nurse (who works for the pharmacy and the infusion clinic) was very clear that they would not even tentatively confirm a bed for me to get my infusions until they were very sure that they would be paid for the drugs.
I called the drug company to ask for compassionate coverage. I called the College of Physicians and Surgeons to ask them to help me get my neurologist complete forms more completely, more quickly and send them to the right place the first time.
I’ve lost track of the hours I’ve spent. I have been the single point of contact. The MS nurse (who was supposed to do this) has failed to return phone calls, is rude and unhelpful and has come astonishingly close to lying.
I’ve cried. I’ve cried in a Starbucks, sitting on a train, as yet another medical professional failed to do their job. I’ve found myself unable to breathe – terrified at the thought of what happened if I couldn’t get the infusions when Ms. Fab was here to take care of me. I could afford the cab rides back and forth, but I couldn’t think of anyone who would come and take care of me. If I couldn’t get the infusions during the break, if I had to wait until my next school break, what happens if I had a relapse because I wasn’t on meds?
Our healthcare system is great in Canada, some of the professionals within it are less than patient focused. I wonder, what happens when you can’t speak for yourself? What happens if you don’t have a voice and a job that allows you to spend an hour or two a day making phone calls and following up?
Perhaps more than anything I’m left with a sick feeling. The neuro will never know or care about the panic and stress he caused. The MS nurse will carry on not returning phone calls or explaining the process. I’m the only one who will hold any accountability and that doesn’t help the next patient they fail.