NICE

Once again, it’s been a long time since I did an update…

Since last time, I have had the sixth round of maintenance meaning that I am half way through the two year course. As usual, I had no problems with the treatment, but there were some new faces at the hospital as some staff have either been promoted or moved to different areas on secondment. I had a good chat with my consultant about things in general and he did an examination to see that things are as they should be.

The Rituximab maintenance adds, in theory, between 24 and 30 months to the remission period following the first round of treatment. Add to that the 2 – 3 years that is the typical remission (without the maintenance) and that adds up to a useful period of time. Anything up to 5 years until the next round. That sounds great until you realise that I have already had one of them… The fact that the maintenance takes two years and adds about two years to the remission is entirely coincidental.

Last week I attended a NICE committee meeting. This is the body that considers whether certain treatments should or should not be provided by the NHS. I was asked to attend by the Lymphoma Association as a “patient expert” and I was happy top do so. About 2 weeks prior to the meeting, I was couriered a copy of the “Highly Confidential” supporting paperwork – all 1,000 pages of it.

The meeting was a real eye-opener. Firstly, there were about thirty people in the committee – all Drs or Professors or something similar. It must have cost a fortune to have these people there all day. Secondly, and I had been previously warned about this, the committee is there to consider whether treatments or drugs are “value for money”. In this case, the patient’s life is the value and the tax-payers provide the money. It’s quite sobering to read a paper where lives are reduced to a monetary value and the criteria for approval include such concepts as “Quality Adjusted Life Years”. So, it’s not just about how much longer a patient might live, but also the quality of their life. Which is fair enough – there’s no point in being kept alive if the quality of life is rubbish. Is there?

There was another patient expert with me at the meeting who took a completely different view on the proceedings from me. She didn’t read the paperwork and, despite having the same form of NHL that I do, and having only one round of chemo, she is both convinced that she is cured forever and will not need any further treatment, but also that the chemo she received cured her of all sorts of other complaints. Good for her – she was very happy and positive about the whole thing. Together, we made our contributions to the debate, which was basically to consider whether Rituximab should be used as an adjunct to all suitable chemo treatments, not just the two or three that it is currently licenced for. The answer seems obvious – to me – but what do I know?

B is on the last leg of her round the world trip. She is now in Boston, so we have been giving her some tips on where to go, including taking the ferry to Provincetown. She would really like it there. The ferry or train to Salem would be a good half-day out too. Then, she’s back to New York for her final week and then home. She’s had a few days in New York already, having decided not to go all the way down south to Nashville, and she’s really looking forward to spending a few more days there. It sounds so good, we have decided to follow her next March if we can. It will be good to have her home; she’s been away a long time.

Now, it’s time to start getting excited about Palermo. Only a couple of months away… These years go so fast now.

The journalist mentioned last month hasn't called, so it sounds like that has died a death. I've decided that maybe he's not impartial enough, if he's actually working for the drug company, so I will decline to be interviewed if or when he does call.