Today in Saint John, New Brunswick, Karen Ross and I gave a presentation on patient advocacy to oncologists who treat kidney cancer in this province.
Two Things I Learned Today
I learned a couple of key things about what it would have meant to grow up in New Brunswick instead of Ontario:
a) I might have turned out bilingual. It’s truly impressive to see the language proficiency here in Canada’s only officially bilingual province.
b) I would very likely be dead by now.
Perhaps the second point is worth explaining in the context of this blog. The trouble is that I have non clear-cell renal cell carcinoma (papillary). Even a creative pathologist (if there is such a designation) would have trouble finding a single clear-cell case in my tissue. So, because my cells look all spindly instead of round, I would be completely SOL in NB.
Treatment Options in NB
For non-clear cell patients in New Brunswick, the treatment options are:
1. None. (This is not acceptable by anyone’s standards in 2011.)
2. Interferon. (In my view, this is perhaps worse than (1) above. Not only does the patient have no real hope, but they also get to feel like they have the flu every day.)
Torisel is not funded in New Brunswick, nor is Afinitor. So there go the mTOR options. Sutent and Nexavar are funded, but for clear cell mrcc only. There are no clinical trials here for non-clear cell. What’s worse is that many patients in NB do not have the financial means to travel elsewhere for trials.
While this is incredibly frustrating in this day and age, we do have a plan to address the situation. Oncologists here have agreed to work with us, to meet with government bureaucrats, and to speak to the media as necessary. We’ll be meeting with drug plan managers in the coming weeks.
Patients in New Brunswick, we need you to speak out. It’s not reasonable that your oncologists are working on your behalf while having both hands tied behind their backs. Whether you have clear cell or non-clear cell renal cell carcinoma, the treatment options in front of you are not nearly adequate, nor do they live up to Canadian national guidelines for this disease.
“That Makes No Sense Mum” — What my kids say about my French
We will campaign — in English and in French — because this situation doesn’t make sense in either language.