Just been playing around with historical price data. Created a graph (will post as a reply so it can be bigger!)
Seeing it in graph form makes the price issue so extremely obvious.
(There's a small number of dates for which I do not have definitive price data. I have simply used the surrounding data - it doesn't make any real difference)
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helvella
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Even though we all knew about the ridiculous price rises when you see it like this it really makes you wonder as to how that can have been allowed to happen. What is the manufacturers excuse for it? Cost of ingredients or what? It is really bizarre.
AND incredible naivety of NHS/Govt negotiators! Nobody has come out of this fiasco with clean hands. However thyroid patients have come out the worst of all! We are being punished for their inefficiency (or perhaps something even worse) and for the pathetic faux reasoning behind NOT prescribing T3. One wonders at the idiot endocrinology advice within the NHS in the face of up to date research. I am beginning to think these idiots are enjoying their little power plays at our expense. Insanity.
The NHS is just about the biggest buyer of medication in the world and with that comes incredible power which should have been used to source suitable t3 at the best price in the world. Ditto all other medication. Sure the pharmaceutical industry feathers it's own nest, but any seller will do so if the buyer is stupid / incompetent enough to let them do it and having only one approved source of t3 qualifies as both incompetence and stupidity.
Yes. Not so curious though if we look at the decisions made by our leading lights. And I think there might be more competition in the supply line. NHS huge purchaser too.
Thing is, we did notice. So did the various parts of the NHS who deal with medicine supplies, who decide on the various coloured lists which stop things being prescribed, GPs who manage their medicines budgets, etc.
It seems to me that this medication price elevation looks like a national scandal which justifies press and parlimentary scrutiny .I say this because a large proportion of people who have thyroid disease and need yes NEED these meds are women of a certain age ( am.I right I think I am) .Is this institutional prejudice ? If we were a racial.minority ( and some of us also are) there would be hell to pay . This is the age at which we become invisible , we are menopausal and therefore lose confidence and become vulnerable so can be gas lighted f or all sorts of reasons . Why are diabetics not treated in that way,,,? ( Theresa May are you listening? ,)
Where are All those female MPs of all parties,? ..their silence is deafening.
Surely hypothyroidism will go down as one the worst chronic illness scandals of the late[er] 20/21st Century, some of this being attributable to misogyny? Hmm, of course there are other [sneered at] illnesses, yet hypothyroidism has/had such a rich history making this simply inexcusable.
The thing I don't "get" is that it's not hard to relieve the worst symptoms , And not expensive .By comparison with he consequences of non treatment its surely a " no brainer" ( if you eliminate the criminal t3 price fixing commercial monopolies)
I just don't understand why there is such a mental block on primary care knowledge it's not rocket science ..... just look at the t4/t3 numbers and try out t4 and t3 therapy . The only thing I can think is that mecics don't believe patients would stick to a pill taking regime of 2 tablets ( t4 +t3 ,) in morning on empty stomach and no food for 30 mins , followed by two more t3 on empty stomach etc 6 hours apart later in the day .
When looking back on my own journey at the hypErthyroidal stage when I was put on bock and replace therapy , , the Endo expressed surprise that I was able to keep to the t4 and t3 regime . ....WHAT? Surely after the pure hell of the first 6 weeks of untreated hypEr (ignorance of GP) there is absolutey no way I would not comply .
I think the medical profession think we are bimbos. I wonder what others think the reason might be.
The assumption that T4-monotherapy is good for all is difficult to dislodge. If nothing else, every medic involved has to accept they have always been wrong.
And every time a patient doesn't do well (maybe too little or too much T3, inappropriate T4 adjustment, single rather than multiple dosing, etc.), it will tend to reinforce that T4-monotherapy assumption. Even if it just needs some thoughtful nudges.
For many, I suspect that the medic involvement - probably more appointments, more prescriptions, more tests - likely ends up a larger cost (in time and resources as well as money).
Because T4/T3 ratios and labs are individual, and other health conditions, adrenal reserves, lifestyles and many other factors influence thyroid hormone behaviour it makes it impossible for basic GP guidelines.
And seeing as doctors tend to think we are either hypochondriacs, pill junkies, have mental issues, etc, they seldom consider our symptoms even when they are glaringly obvious.
I think the answer would be to have a specially thyroid doctor in every practice with up-to-date conventional and functional training and direct support of an endo, but until endos aren’t beholden to the TSH and are allowed to think for themselves, that isn’t going to happen.
Yes, its budgets but money is continually wasted on inadequately treated hypo patients being sent on a complete merry-go-round of expensive and sometimes invasive tests such as endoscopies, colonoscopies, rhinoscopies, Stim tests, heart scans and on going monitoring, gall bladder investigations, the list goes on & on .....
And then as a cherry on the top mis-prescribed PPI's, anti-D's, anti-inflammatories, statins, the list goes on & on ... . ...
And all the while they are creating other health conditions that then need treating, when all many of us need is a little T3 added to Levo to reverse everything.
Overall cost effectiveness isn't looked it - they look at elements but not the whole picture.
The consortium of thyroid organisations have emphasised this in their reports which have gone to NHSE, DoHSC and several of The Lords, and we've spoken to NHSE people about it, who still seem very shortsighted.
Totally agree. They seem not to acknowledge that some out there in the world have also studied [not rote stuff + we're lucky if some philosophical/psychological knowledge is able to be considered, even applied!?] for as long as they have. Their Arrogance, Belligerence and, often, Cantankerousness, Duplicity, Entitlement... I could go on, appears to have been [overtly!] 'learned', as some branch of 'back-covering-ego-back-up'.
'Able to keep up a regime' ! WoW 🔍🦕🐍 Bare-faced...
Non-treatment: not sure 'they' care that those much needed [especially now] resources are being squandered due to sheer pig-headedness. Cost of T3 surely indicates that someone isn't on the ball? My father [died 54 y/o, polypharmacy, following 20+ years of shoddy treatment of MND ): he used to say, "Quacks, just scraped through"! I've encountered a few of them within the thyroid field and beyond.
I have to say that some branches of medicine are superb... perhaps the chronic are designated to the chronic!?
Reading your response, it occurred to me that one's opinions and views appear to become devalued in the eyes of the "cognescenti" if you are invested in the issue ,either as a sufferer of the thyroid condition or as nearest and desrest of one ,. Also if you disagree with the existing medical.opinion also degrades your credibility inthe eyes of the Great and Good. It seems to me that reasonable and reasoned argument ( eg rigid application of tsh alone) is essential to medical.progress .Hay ho
Indeed. Quite frankly, until someone takes a closer look at the education trotted out to doctors, we're doomed; not so in many specialties, where great work is done.
Until many rote-learned notions - as being pretty much all there is to medicine, aka our lives - are semi-beaten down via "The History of Science", "Probability, Likelihood and Inference", "Decisions in Uncertainty" and the like, with a dollop of some key Philosophical ideas, we seem to be doomed forever. I generally point out stupidity when I encounter it... you can imagine how well I go down with them. 🔍🦕🐍😆
The Competition and Markets Authority did start an investigation in 2016. The investigation is completed, but I think the pharmaceutical companies involved are still appealing the decision. The history and details of the investigation are here,
it’s totally criminal, people should do time for this embezzlement never mind about a meagre fine. Although I was aware of the price hike, this graph really does tell the story in a much more impactful way!! Amazing work, thank you for sharing!
I've been thinking about it for years but suddenly realised I already had an account I could use. Set up in 2012!!!
My profile here contains a link to the blog. But profiles don't make links into full hyperlinks you have to copy and paste, or select and choose "Open in new tab". (Or whatever your browser/operating system provides.)
Whilst it is entirely possible that there has been corruption behind the price of liothyronine, this is not the right place to discuss the essentially political nature of that.
I'll leave this reply for now. But please do NOT continue down this route or we will turn off replying to this thread.
I understand but experience shows that if such comments are made they tend to accumulate comments both defending and attacking both individuals and parties.
We could do with a "Politics of Thyroid Disease" forum - somewhere - but I guarantee I'll not volunteer to moderate it!
It is extremely difficult to pick out a path between aggressive editing and removal of posts which have even a vestige of politicality and allowing a total free-for-all.
If a doctor tells a patient they cannot be prescribed something due to cost (as with liothyronine/T3, on occasion), then that is the patient reporting what they were told. And is entirely reasonable. But if it goes towards who is deciding how much funding for the NHS, that becomes very political.
Whatever we moderators decide, we will upset some and (if we are lucky!) be praised by others. It is in the nature of moderation.
in general, provided there’s more than one licensed supplier, competition between suppliers does keep price down in generic market extremely effectively giving U.K. very cheap drugs
It was the deliberate searching out of single licensed niche medications to exploit for vast profits that is why C and MA were able to take them to court and win the case
But wether the £100m fine will ever get paid …….we wait to see
Sorry, I'm a bit confused! Are you saying that there is only one licenced supplier for liothyronine? The 2 batches I've had so far are from different suppliers.
At the time of the price explosion, that was the case.
Additional liothyronine products from Morningside and Teva were granted approval in 2017, and further products from Sigmapharm, Roma and Accord even more recently.
1954/01/08 Trademark Tertroxin registered in UK.
1956/07/14 Tertroxin tablets of triiodothyronine sodium claimed as the "ultimately effective " form of the thyroid hormone (Glaxo Laboratories, Ltd.)
1990 to 1995 Trademark Eltroxin acquired by Mercury Pharma Group Limited in UK. (I assume this acquisition included Tertroxin.)
2003/01/08 Trademark Tertroxin in UK dead when not renewed by Mercury Pharma Group Limited.
Hydrocortisone is an essential drug according to the World Health Organisation but this did not prevent Auden McKenzie increasing the price of this generic drug from £1.07 to £147.50 for 1 month’s supply between 2008 and 2017.
The NHS was forced to pay an extra £60 million per year until 2017.
Imperial College commissioned the synthesis of low strength hydrocortisone from Genesis Pharma, who then launched the drug on the open market. Until then, there was no competition.
The study, funded by the NIHR (the research arm of the NHS), required a modest investment of approximately £100,000 to initiate the process.
This contributed to a reducing trend in hydrocortisone prices, from over £147.50pcm to £3.55pcm between 2017 and March 2021.
This demonstrates the effectiveness of non-profit motivation in competing with industry; an investment of £100,000 has saved the NHS over £50 million each year, without the need to invoke the CMA.
hydrocortisone is just one example of the abuse of market position, but there are many more. Synacthen, Liothyronine and Lithium carbonate are examples of very cheap generics that have been “debranded” and then the price increased substantially.
Very recently, Advanz pharma have been fined for raising the price of liothyronine
For many medicines, especially ones which are moderately easy to manufacture, then the NHS commissioning contract manufacture seems an entirely reasonable approach.
The simple fact that the NHS could do so should act as a very powerful bargaining chip.
I can easily see other reasons to adopt that approach. Even if the intention is always to do so only for as long as necessary.
I think some might have imagined the NHS setting up physical factories. With all the costs and issues of running them.
Whereas I suspect the appropriate route would have been having an organisation which can manage contract manufacturing arrangements. And, maybe, taking a role in distribution.
For some medicines, there might even be an export market.
Given NHS medicines cost savings, better treatment (than if the medicines are not available for cost or other reasons), and the possibility of supplying both non-NHS requirements in the UK (veterinary and private health companies), and exporting actually providing the potent to make money!
Given that the big thing with NHS and public health is what Rishi would call " getting out infront " of an emerging problem .( like covid and flu jabs) .. and given that treating thyroid problems must be easier than the obesity,/ cardiovascular/ mental health/ bone health / the demographic time bomb etc implications of failing to treat it , it seems to me that getting thyroid trestment "right" must be a pretty high priority .....but it seems not to be .
Can’t agree more. The Civil Service at the behest of the Government of the day should be right on top of this. Generally many civil servants are not well qualified but left in charge of huge amounts of tax payers money - our money! The quality of civil servants varies hugely and governments generally do not have much respect for them and pay them poorly. However the ministers who give out the orders are the ones who need to be really knowledgable about their departments. With the amount of switching and timing of postings (general elections, deposing of prime ministers etc) a huge amount of time and money is wasted by our governments, no matter which party are in charge. Accountability is therefore often remarkably MIA.
Thank you - really useful. I assume this can be shared?
For interest also, this is data showing costs to Norfolk & Waveney CCG from 2015 - 2022.
It shows that despite more patients receiving T3 now - because of their good T3 patient pathway - the overall cost has come down. Useful to show to other ICBs/doctors that 'allowing' T3 does not open a floodgate of expense. This image can be shared
Good thyroid patient pathway ...that's what we want ...proper GP Kknowledge not calling a t4 test figure of 8 borderline in 2022 ( range12 to 24) in Suffolk
Feel free to use it wherever you like. It's in the public domain now. The consortium of thyroid organisations produced a big report in 2022 showing the majority of ICBs (CCGs) do not follow national guidance on T3. We were kindly given this data graph by Norfolk & Waveney ICB at that time. The report was sent to NHSE and DoHSC, and the media.
If you're on Facebook, join us on ITT Improve Thyroid Treatment. We have template letters you can send to endo, GP, MP, ICB, Healthwatch, PALS, whoever you like.
They detail all the national guidance and parliamentary statements on T3, which should be being followed as good practice. I don't see how ICBs can argue with so much that has been said nationally.
This thing about patient pathway interests me much . How can I get the info for Suffolk? About a month ago my GP told me that I couldn't have t3 test or t3 tablets....then when I saw my blood test results on my record he had done a t3 test...maybe he looked up the pp to refresh his mind . How can I find those graphs and ppnfor Suffolk and North Essex ( I think that is the area ) ??
Have a look at who funds the MRHA, our supposedly independent regulator, and you can see where all the issues stem from. They are beholden to funders who make their money from big pharma and are also the major donors to the governmental political parties. The whole spider web is full of corruption and self-interest. The WHO have the same issues. I'm currently finishing an MRes in Health Research and given everything that has happened over the last 3 years with the corruption stepping up exponentially, I'm not sure it's actually a career I want to get in to. I just want to help people whereas these ******* are only interested in helping themselves.
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