What will I be doing tomorrow?

Tomorrow is December 9th. As I mentioned in my last post, December 9th is when the nurse was booked to give me my first shot. This past weekend I began to worry. The nurse was booked to come on Wednesday but I still did not have the drugs. Because of the way she said it, “You’ll have your drugs by then” I assumed that I would have the drugs here waiting for her. Perhaps I assumed incorrectly and she was to bring the drugs with her I thought. So on Monday I called the clinic to find out what was going on. They had to look up my records first of course so they told me that they would call me back. They called me back soon and told me that the paperwork to get it covered by the government had not come in yet.

One thing I discovered, when I moved back to Ontario from Quebec around three years ago, was just how many drugs that were covered there were not covered here. According to the Canadian Health Act, health-care is supposed to be consistent across Canada although the provinces are responsible for providing it. Anyone who has moved from one province to another is fully aware though that not all provinces are created equal. When I made my first trip to the pharmacy after moving here half of my prescriptions that were covered in Quebec were not covered in Ontario. So that meant rushing to see the doctor to see what substitutions we could try. This has been an issue with treating both my HIV and my Hep C. Just recently my doctor wanted to start me on one of the new HIV drugs recently approved. It would have meant fewer side effects, fewer complications with the Hep C drugs and would be easier on my liver. The government has not added the drug to their formulary so it was not covered. There is a process of last hope though. If you can prove that you need this drug and there are no other options for you the drug may be covered. The form that needs to be filled out is called ‘a section 8.’ So when I use the term ‘waiting for a section 8’ I am using the language used here to explain that I am waiting to hear back whether the drug will be covered or not. In the case of that new HIV drug, my section 8 was refused. Although there are no other drugs used to treat Hep C you need a section 8 to have it covered because of its high cost. So when I called the clinic on Monday and asked what was happening what they told me was that my section 8 had not come through yet.

Shortly after talking with the clinic I got a call from the nurse canceling our Wednesday appointment. Since the timing of the section 8 is uncertain and the holiday hours are upon us she was unsure when we should re-book. So she has left it at, "We’ll try and do it around the middle of January."

So I was feeling a little deflated. This is the second time that I thought I had a start date just to have it pushed back. I psyche myself up each time, getting ready to start, so it is a let down when it doesn’t happen. Being let down twice makes it even more daunting. I had mentioned in one of the forums on The Nomads website that I might not announce another ‘official start date.’ Next time I may just wait until I do my first shot and then announce I had started. We’ll see how it evolves.

In one way the delay is a blessing. I now don’t have to worry about side effects of the treatment interfering with my holidays. Also, I was reading the other night that people should have all of their immunizations up-to-date and be up on their dental cleanings before beginning treatment. I was able to get my seasonal flu shot yesterday and today I booked a teeth cleaning for Monday. So in one way this has worked out for the best. What has been a point of frustration for me, other than revving me up each time, is my hope that the sooner I start then the sooner I’ll be finished. Originally if I had started on my first official start date I would have finished up in early fall. I've been worried that if I have a hard time with side effects that I’ll be giving up my summer. I had hoped that if I finished earlier then I might experience a few warm days before next winter hits. Now there is no possibility of that. By starting in the middle of winter I’ll be finishing early winter next year. Mind you if the side effects are tolerable then this will be mute point.

So that leaves me with the question I started with. “What will I be doing tomorrow?” I will not be starting my treatment. We are supposed to be getting hit by our first storm of the winter, so I have stocked up on supplies and will rest and stay warm. I’ll also be talking with my caseworker at The Toronto PWA Foundation to put off the services that were to be used during my treatment to next year. The same story with ACT (The AIDS Committee of Toronto). It is great that I can do these things over the phone and stay warm. So that will mean that I probably won’t have a lot to report now until the New Year. If my section 8 comes through I’ll report that.

Cheers until next time,

David McHep C