life is unfair, I'm under no illusions
but this takes the custard cream
When i was first diagnosed it was a monumental shock to the system and I attempted to make sense of it all by Googling my prognosis, I promptly gave myself two to five years, which may or may not be the case, it had better not be because I've got a lot to do in a short space of time.
I stuck to tried and trusted sites and avoided the cancer conspiracy theorists wherever I could.
My daughter did however find a few comments on various sites about how the big pharmaceutical companies had the treatments and cures but were holding them back to maximise profits. No, no, no, I said, that's simply not true, we have the health service in this country, in America a lot of people can't afford treatment because they don't have health insurance, we have the NHS, I'll be fine
But then I met the nice people from NICE. The good doctor was very informative but he said we don't exist to just say yes. We are allowed to say no. They took us through a case example for a specific drug for mesothelioma which can extend the lives of sufferers by a few months. Having spent quite a bit of time on the online community directing people to the right groups I have come across accounts of what the last few months are like for cancer patients and it's not pleasant, in fact when you get to the last few months there is often a feeling of imminent release.
My friend Samantha had stage 4 breast cancer, Her2+, which has spread to her liver. Her treatment includes the drug Kadcyla. The NICE criteria for Kadcyla is that it extends life for about 9 months.
This simply does not paint a fair and accurate picture of what Kadcyla can do. Samantha's liver tumour is gone, she currently has no evidence of disease and if she continues on this path the drug could extend her life for many years. A truly remarkable drug.
It is one of the new types of cancer therapy that we the public put our hands in our pockets to fund every time one of the tear jerking cancer charity adverts gets aired on the telly. It's wonderful, marvelous. It's what the research pays for.
But, it's too expensive and it doesn't 'save' enough people.
Around 11400 women die in the UK every year from breast cancer, a shocking statistic. Around 20% of those will Her2+.
I don't know what the future holds for me, I had treatment for my primary breast cancer, which included Herceptin (trastuzumab), which the government refused to fund but eventually did due to public pressure and a court case.
If my cancer comes back and there is, apparently, a 20% risk of that, my next line treatment is trastuzumab and pertuzumab until they stop working and then Kadcyla.
I tried to take out private health policies at various times in my life but for whatever reason it wasn't practical or affordable.
IF I had a private healthcare policy I could have any drugs I need and my oncologist wanted to try, there are even more options that this.
We marched on parliament, well, not exactly marched, we strolled in for tea and cake. I met several women who have had access to treatment and some who will be denied if NICE so no to Kadcyla.
These women are not at deaths door they are very much alive and with these drugs can continue to live life to the full, riding their horses and running marathons, looking after their families and running their businesses.
What are our options?
1. NICE say yes and pay what Roche are asking
2. Roche lower their price to make it more acceptable, or at least meet half way, a compromise.
3. I try and take out a private policy to cover the worst happening, I know this only covers me but I'm only really worried about me, if I can help others because I have a plan to help myself that's a bonus. Perhaps even campaign for affordable private policies to plug this gap, the worried well who are waiting for a recurrence but have a bit of cash to invest. It would alleviate some of the stress on the NHS. In fact my onco was so in favour of this plan she's helping me in any way she can.
4. We beg the charities to part with some of the donations to help people get access to treatment, surely there's little point in throwing millions at research if the resulting drugs sit on the shelf.
5. buy shares in Roche ?
6. any other ideas welcome ...
until the next ramble
xx
