A long thread has just looked at members experiences of different statins. Inclusiran is mentioned, in passing.
Inclisiran, is an alternative to statins, still being researched (I am on the study), and is now available, but limited by certain tight criteria.
‘Inclisiran will only be given to people with high cholesterol who have had a previous cardiovascular event, such as a heart attack, unstable angina or stroke. It will only be given when treatment with statins has not helped lower their cholesterol enough or they are unable to tolerate statins’.
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And not only do you have to qualify through statin intolerance there are requirements on LDL levels nice.org.uk/guidance/ta733/...
And although GPs are authorised to prescribe Inclusiran, they seem reluctant to do so, well mine was last year when I approached them putting up the excuse of lack of training, although the area health board confirmed they should be capable of prescribing. I never took it any further.
Ironically I was also nominated by the GP practice for the Inclisiran trial and got as far as the hospital induction and was ready to start but then the pandemic struck and so I never actually started, and then when things returned to something approaching normality my hospital no longer supported it so I was 'released'.
Thank you for that information, did you have any side effects that you can tie down to this drug ? as the biggest complaint always seem to be the side effects of standard statins.
I have been lucky { odd word to use } but other when first starting them I have had no recurring side effects.
The standard one Atorvastatin seems to have lowered my cholesterol .
Take care and thank you for taking part in the trial it all helps us and future sufferers
Thank you. It is a double blind trial so I’m not sure if I have the active drug. But no, I’ve had no new side effects. The trial still has another two years to go, but they told us it was being rolled out now as the benefits are already getting clear (for the criteria group).
Statins are the first form of medication that are prescribed to manage cholesterol levels, but since Inclisiran has been approved by NICE, relative cost should not enter into it, provided a potential candidate for receiving it meets the criteria that are laid down by NICE and the NHS.
After my GP put up the excuse of lack of training in June last year I approached my local Integrated Care Board who are responsible for GPs and was told
Inclisiran is Green on the local ..... CCG Formulary (chmsformulary.nhs.uk). The formulary hosts additional information to support clinicians with the prescribing of Inclisiran as per NICE TA733 for suitable patients.
I have been advised that the relevant information will be forwarded via email directly to your GP practice.
Which was confirmed in a follow up to mean the GP would have the wherewithall to prescribe. But as I said I never followed it up the reason being that I had a low (for me) annual cholesterol result which would have probably excluded me.
Finally the NHS was authorised to prescribe Inclisiran back in Sept 2021 with much trumpeting about the good it would do (see below) and yet we may still be faced with the situation where primary care are not equipped or do not have the will to prescribe it.
Sound like lack of joined up thinking then. One half of the NHS saying one thing another saying nothing or something else.
My recollection is as, early as last year, there were people on here who were not part of the trial, who were being prescribed by their GP (not their cardio specialists) which is why I approached my GP in the first place.
Which still begs the question why has it taken so long to roll out?
I am not doubting your source of reference
But what's all the waffle I was given by the local Integrated Care Board regarding 'green' actually mean? I didn't make that up, it was copied from an email I received with the actual CCB identification deleted by me. Plus I was subsequently told the GP could prescribe by the same source. Plus others said on here at the time they were also being prescribed by the GP
And I don't expect any roll out to be 'immediate'. But we are nearly 18 months down the line.
Anyway I'm done. It is what it is, and hopefully where applicable people will now be able to access Inclisiran through their GP, and get the intended benefits.
I was prescribed Inclisiran by the lipid clinic I was referred to by cardiac rehab. The inclisiran was added to the Ezetimibe 10mg I was already taking. I only found out I was prescribed it when I had a drug review as the lipid clinic didn't contact me, just sent a letter to my GP after reviewing my case. My injections have been organised with my GP but there is a lack of awareness about inclisiran at the moment.
I had my first Inclisiran injection last October, second injection in January and my LDL has reduced from 3.2 to 2.2 over the three month period. Overall cholesterol level from 5.5 to 4.3. The only side effect I seemed to get was a couple of days of shin pain about a week after the injection. I could hardly walk due to shin problems when on statins.
I'm due my next injection in July so I'll get my cholesterol tested again as in most studies people have had a 50% reduction in their LDL levels so need to find out what effect the second injection has had.
I qualified as I've had a couple of nstemi heart attacks and uncontrolled angina in the past.
I think that you will find this is the charge that is made to local budgets (£45), there is an arrangement for the bulk of the cost to be funded centrally. I think it is over £2000 a shot. england.nhs.uk/aac/wp-conte...
Yes, the supplier will provide it for £45 (and trusts them claim £55 to reimburse locally) because the NHS is also providing the bulk of the cost via a central funding arrangement. Here is another link referencing cost at approx £2k per shot. The size of the NHS discount is not disclosed, but the cost will still be significant. The US price is $3250.
The guidance I posted in the link in my last post states “As the nominal charge is below the contact price which has been agreed with Novartis, a separate payment will be made to Novartis from a central NHS budget for the difference between the contract price and the nominal price.”
I said "The size of the NHS discount is not disclosed, but the cost will still be significant. The US price is $3250" and then posted the link to the quote you have just quoted in reply, so I think that is pretty much what I said?
Just to be clear, I am just trying to clarify that Inclisiran is an expensive drug. It is not "approx. £50 a shot, £100 a year, whilst more expensive than Statins It isn’t that expensive".
So for clarity I think we have established the following:
1 - It normally costs about £2k a shot (Source: Guardian article I posted)
2 - The NHS has secured a significant discount, but this is undisclosed (Source: Guardian article I posted)
3 - Whatever the confidential contract price is, it is still high enough to present a barrier to prescribing and therefore it has it's own framework to cover the costs on local budgets. (Source: Guidance I linked above)
4 - When prescribed by trusts it is covered by the:
"interim high cost drug cost and volume arrangements for Specialised High Cost Drugs." (Source: Guidance linked above)
A couple of personal anecdotes to add:
The last time I had it the nurse said "I don't like handling this in case I drop it or something as it is so expensive".
My surgery only order it in for a specific appointment and keep it in a safe (distinct from the secure controlled meds cabinet) due to it's high value.
Hope that helps clarify the point I am making (it is expensive, dont know quite how expensive, but a lot more than £100 a year for sure!)
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