249. And it gets worse…

Yesterday, after I’d indignantly posted about Evusheld, I shrugged it off. I have to adapt to a covid-world like everyone else, just be a bit more cautious. Then the chatter started. A bit here, a bit there and then an appeal from the Breast Cancer Now charity to sign its letter to NICE and all the stakeholders in Trodelvy.

You may recall that Trodelvy is a very new drug specifically designed to treat triple negative breast cancer, which is very hard to treat and for which there aren’t many treatments. I excitedly told my oncologist about it (he knew it by another completely unpronounceable name, so we were at cross-putrposes for a bit) but it transpired that the manufacturer, Gilead, was making it available free of charge for the treatment of third line patients, in return for data. I’m only first line. But there it was, the current Holy Grail, the drug that could significantly extend my life. I could wait.

Recently Dr U brought it up in a consultation. He more or less said he now has several patients on it and it is living up to its claims to work effectively where traditional chemo has failed. Then he said something like he feared that, by the time I needed it, the money might have run out. I assumed he meant this year’s Trust budget, maybe next year’s and thought I’d just go private.

Now, NICE has made an interim announcement (that in itself isn’t usual) that, although Trodelvy does improve outcomes for people with triple negative breast cancer, it is unable to recommend its use by the NHS, based solely on price. Of course, I was fuming. Been there before - my SSRI that has no side effects was removed for the list by NICE, which argued that they could find no grounds to justify spending on a slightly more expensive SSRI when there were plenty of existing ones already doing the job. What they overlooked was that this SSRI seemed to have no side effects, like the brain zapping, edginess etc that you might get (and I did) on fluoxetine or any of the others - and I’d tried them all. It was better-tolerated, with no constant reminder that you’re taking it, no flashes inside the brain, So I got the prescription privately for three years, till NICE reversed its decision. Yay, celebrations, but no - it was post-dated for another year. Four years on, I tried to get it. It’s licensed by NICE. It’s available in other Trusts but not Leeds. Leeds left it as red-flagged, which meant it could only be prescribed in hospitals by a psychiatrist. So now I have to have a bi-monthly psychiatric assessment which takes the form of half an hour listening to my lovely psychiatrist giggle and chatter and then say she will pop my new prescription in the post!

I’ve digressed. Trodelvy. I blamed NICE, ranted and railed internally and then starting digging into it. It’s not NICE (ha bloody ha), NICE has left its door open with a clear invitation for the manufacturer to reduce its price because NICE really believes in its efficacy. What was the price? I haven’t found the UK price but in the USA, it’s over $2000 per vial and it’s two vials in each three week cycle. Add staffing and equipment and you’re looking at maybe $5000 per three weeks!! I know Gilead has a duty to its shareholders but where is the humanity?

There are approximately 8000 women in the UK diagnosed each year with my condition, about 10% of all bc cases. It’s the most aggressive breast cancer and the chances of recurrence or metastasis are high. It’s also one of the hardest to treat, which is why the prognosis is poor. Just under half of those 8,000 will benefit from the drug. My oncologist was pretty sure I would. I feel completely sidelined, like I’m expendable,  just so shareholders get their fair whack. I have signed the BCN open letter to all stakeholders to ensure it’s available to the NHS. 

Actually, Dennis doesn’t know he’s signed this lol

I plan to write to my MP but right now…this is the closest I’ve come to hopelessness. I don’t think about the future usually. I’ve just assumed that, if I avoid all possible pitfalls like covid or another type of infection, we’ll have a few years ahead. Now I’m not so sure…And meantime, straight after an inert shingle jab that doesn’t bring on any shingles symptoms, I have a cold sore up both nostrils and some treatment ointment which I can’t use if I’ve low immunity. What next! PITY PARTY. I promised I wouldn’t indulge.