Disappointed, but not very surprised, sum up my feelings up really.
After waiting nearly an hour and a half beyond my appointment time, I saw the haematologist yesterday and he had bad news for me. He has not been able to persuade whoever needed persuading that I should go on the Rituximab maintenance. Indeed, he said that his colleagues thought that he was mad to even suggest to me that this would be even an option.
Apparently, the Rituximab is licenced for use in my circumstances but has not been approved by NIHCE for this purpose yet. They may be making a judgement in November, which on the face of it sounds positive. BUT (big “but”…), they would be approving it for maintenance use starting three months after the end of the initial 8 session course of treatment. By November, I will be 4 months post-treatment and will not therefore qualify. The new Cancer Drugs Fund is also not available for this treatment.
So, I am now in discussion with BUPA to see whether they will pay for the maintenance. One other slight problem is that the recommendation is now no longer one course of Rituximab every quarter for two years, but for five years, i.e. 20 treatments. At around £2,000 per go, we are talking forty grand’s worth, over the five years. BUPA have asked for a full report from the haematologist with details of my condition, the R-CVP treatment that I have recently completed and why he considers it to be in my best interests to have the maintenance. Given that this treatment needs to start at the beginning of October, he needs to get his finger out and get the report to them ASAP.
I mustn’t forget that the maintenance isn’t without its side-effects – people who are on the Rituximab for long periods tend to be more susceptible to other infections for example, as the white blood cell count is depressed by the drug, but the long term benefits are very positive in overall terms. Given that the maintenance regime has now gone from two to five years, I was wondering last night whether we are working up to a situation where a dose every quarter, for ever, is an effective “permanent” solution to keeping the disease under control. I am sure that by the time five years is up, someone will have done more research and a better picture will have emerged.
So. Until I can get an answer from BUPA, I am a bit in limbo.
I could be really selfish and cruel and mention the treatments that I have seen being given to frail old people in their nineties, whereas I am a “fit” 49 year old with another 17+ years of paying taxes to go yet, so where do the NHS’s priorities lie, but I won’t. If that old person was a grandparent of mine I would want them to receive the best of appropriate treatment too.
It’s just that I also want it for myself.
Maybe now is the right time to downsize after all. Let’s see what Skye brings in a couple of week’s time.