Talk:Nusinersen

UK pricing

Hi Rathfelder, I reverted your addition which was based on Manchecher Evening News. The £75,000 per dose has been the drug's list price since 2016 and is unlikely to be the actual commercial offer. As you certainly know, commercial offers are confidential and while media loves to speculate, I think we should not include this in an encyclopaedia. Cheers, — kashmīrī ^TALK 14:54, 26 February 2019 (UTC)

• @Rathfelder: Please do not restore your edits befor discussing here.

1. please try to use correct, formal English. No "on programme", "in NHS", etc.
2. there has never been an Early Access Programme anywhere in Europe. EMA regulations do not foresee "early access". There was only an Expanded Access Programme in place across Europe.
3. There is no "assessment process". NICE does drug appraisals (under STA) or evaluations (under HST).
4. Finally, "Manchester News Today" is NOT a reliable source on medical matters or drug pricing.
5. This is not "Nusinersen in the UK" article - read WP:GLOBALISE. — kashmīrī ^TALK 17:12, 26 February 2019 (UTC)

• I have a degree in English language. I'd like to know what criteria you employ to judge what is correct formal English. My professional opinion is that your spelling is a bit weak.
• Please dont make unevidenced assertions about what I do or dont know.
• There clearly has been an Early Access Programme in the UK. See http://www.abpi.org.uk/media/1329/early_access_to_medicines_scheme.pdf
• Appraisals and assessments are both forms of assessment.
• The Manchester Evening News is a highly respected reputable source. I don't see how your opinion of Manchester News Today, whatever that may be, is relevant to this discussion.
• Any discussion of availability or pricing is necessarily related to a particular health economy. There is a paragraph about the situation in Norway. I don't see why there should not be one about England. There is information about pricing in the USA in the article, so why should similar information about the UK not be included? There is a lot of discussion in many reputable sources about pricing. Not surprising as it is said to be among the most expensive drugs in the world.
• If there are actually any errors in the Evening News article please provide evidence.

Rathfelder (talk) 20:45, 26 February 2019 (UTC)

• @Rathfelder:

• You might like to pay more attention to the language, then. Thanks for your uninvited opinion on my spelling.
• I don't see any mention of an Early Access Programme anywhere in your reference. It only mentions an "Early Access to Medicines Scheme". You might like to know that nusinersen was not made available through EAMS, primarily because EAMS is for investigational products while nusinersen was an authorised (approved) medicine when the programme started. Let's call it the way it's officially called.[1][2]
• Don't invent stuff. Appraisal, approval, evaluation are all technical terms that cannot be used interchangeably. "Assessment" is no technical term; in NICE parlance you assess patients while health technologies are appraised/evaluated.
• I happen to know where the reporter in question sourced their information and how credible in this respect the source was. Your high opinion of MNT doesn't convince me that they got things right.
• The Norway para needs to be edited, too. All the pricing information in Europe is pure media speculation, as commercial contracts and risk sharing arrangements in them are confidential. As an example, see the numbers quoted in this article [3] and then read to the paragraph on Biogen's rebuttal (the numbers quoted are actually significantly higher even than the official list price).
• As to errors: EAP has not been "closed" as MNT has it; it continues perfectly well with existing ~80 patients. It is just no longer available to new patients.[4][5]. The mentioned price is misleading/false - it is an official UK list price but definitely not the actual asking price from the manufacgurer's offer.

In my view, any pricing discussion in this article should be restricted to (1) global list prices, clearly mentioning they are list prices, (2) properly sourced academic articles on Spinraza pricing [6][7][8]. — kashmīrī ^TALK 16:13, 27 February 2019 (UTC)

Thank you. I've amended my contribution in the light of your advice. I agree that we need to be cautious in what we say about the price. The Evening News says "offered it in England at a lower price of £450,000 for the first year, with a further undisclosed discount to the NHS" and I dont know what that is supposed to mean. Who else would they offer it to in England if not the NHS? But I think it's proper to say something about prices in different countries. It's common for pharma companies to vary prices between countries, and readers will be interested in the price in their own country, not just in the USA.

It's not easy to ascertain, and even more difficult to source the developments properly. Biogen was obliged to submit a commercial offer along with their March 2018 NICE submission. That offer, as we know, has not allowed NICE to call nusinersen cost effective. The manufacturer then went on to submit another offer. After the Nov 2018 negative recommendation, the manufacturer and NHS reportedly engaged in further pricing negotiations which however remain confidential. I understand that the outcome will feed into the NICE process and the formal decision is expected on 6 March.

All in all, this is quite a complicated area and I am extremely reluctant to rely on the mass media. As another example of media ignorance, take this screenshot from last Wednesday's 7pm ITV news: [9]

Cheers, — kashmīrī ^TALK 13:15, 2 March 2019 (UTC)

Will we know more when NICE makes its formal decision? Rathfelder (talk) 16:08, 2 March 2019 (UTC)

@Rathfelder: So, you restored what I told you is false? Now go and read the newest creative piece of writing in your belowed MEN: Until November last year, the NHS was funding a treatment called Spinraza which has had some phenomenal success. [10]. FYI, I am going to remove your text again, and please be mindful that what you are doing is disruptive editing. — kashmīrī ^TALK 15:33, 7 March 2019 (UTC)

• So what is false?Rathfelder (talk) 18:13, 7 March 2019 (UTC)

• £450,000. — kashmīrī ^TALK 19:47, 7 March 2019 (UTC)
• Additionally, mentioning Estonia is factually incorrect. One, as of now Spinraza is not reimbursed in Latvia, Estonia, Bulgaria, Ireland and parts of the UK. Two, the reason is not that Estonia rejected the price but that reimbursement procedures have not yet completed in three countries in which regulatory filing was done by Biogen's official representative Janssen (Biogen contracted Janssen only sometime in 2018). Note that Latvia and Estonia, like all of the Baltics, have very low SMA incidence and SMA therapies are certainly not a priority there. — kashmīrī ^TALK 20:04, 7 March 2019 (UTC)

References

NICE appraisal documents - June 2019

The NICE final appraisal document has more we could use. eg the considerations on ICER and QALY (including carer utility), SMA subtypes included, period of commercial agreement. - Rod57 (talk) 14:03, 3 January 2020 (UTC)

Yes, but they are specific to the UK appraisal. Other HTA agencies have arrived at different values. Sure we can try to use some of the info, but with a mention that they relate to the UK and NICE methods only. — kashmīrī ^TALK 14:06, 3 January 2020 (UTC)

Pricing ranges and development

It would be interesting to see a graph as to how the cost of the drug changed over time. Nusinersen here is a bit of a "representative" for other expensive treatment, so I think it would be interesting to add a graph to the wikipedia page (provided the graph is generated objectively and correctly, of course). 2A02:8388:1641:4980:0:0:0:7 (talk) 01:42, 14 April 2023 (UTC)