The very good news of the fining of Advanz and others have brought some journalists to me needing case studies of someone who has been affected by having their T3 withdrawn or refused.
If you would be interested in talking to a journalist, please contact me on enquiries@thyroiduk.org asap.
I have had difficulty getting advanz but can get from only one Boots now
This is excellent news, but the trouble now comes up that, because of the historical high prices, the medical profession in the UK has used that over the time to justify (not directly through price but through an ersatz and bogus intellectual development of "well it was no good anyway") their refusal to prescribe T3. I fear that a price drop may not happen as soon as we hope and that the medical world's justification of their stance will continue whatever happens on price, until the fact of inadequate treatment is really taken aboard.
This is exactly what I was thinking. All those Endos can’t possibly lose face now and say they were wrong
When my endo tried to reduce my dose I was blunt and asked "is this a cost or health decision"- he blustered sonewhat and of course said health ( had/have low TSH (no surprise on Lio)) to which I replied I would not accept the reduction (T3 bloods were still quite low) he has since increased my dose - success on 2 fronts.
This was your GP?
My GP told me T3 was an illegal drug and refused to even refer me to an Endo in Cardiff who has been recommended to me. Despite the fact that Cardiff is in Wales - and so is he and I - he repeats parrot fashion that he can do nothing except give me Levo, because nothing else is legal.
Not my GP he only does what Endo approves, was my Endo I stood up to.
I totally agree, if we had typec1, or maybe even type 2, they might be more interested, but the medical profession have given up on us and it easier to give out levo and treat the symptoms that are not eased by T4 for many of us. So many symptoms which they prefer to hand out meds for like sweets, making us feel worse, not better.
It is a scandal that hypo patients have been treated with complete disdain, dropped like hot potatoes.
'They' are appealing - that will take time.
I saw this with interest. So just goes to show that everything relates to money. Agree with comment, that by giving another justification for not prescribing, this will live on with the medical profession even if the price comes down
Link to bbc post, which I didn't find very clear.
BBC News - Drug firm fined for huge price rise that hit NHS
bbc.co.uk/news/business-580...
Thank you for the link , a very interesting article . Mx🌹
Details are here gov.uk/government/news/cma-... .
The CMA have done a great job, they have very limited resources and are only allowed to persue a case if they expect to return £10 for every £1 they spend. (I may be a suspicious character but I believe this unfair rule is put in place by politicians who have investments in companies that rip off the British public). Also, these pharmaceutical companies have enormous resources and access to legal teams. If the CMA pushes too hard they can stall and overturn decisions. The CMA do well with what they have.
The real culprits are the NHS who allowed this to go on, and endocrinologists who deliberately turn a blind eye because it helps them not prescribe liothyronine. NHS trusts are now in an excellent position to sue the drug companies for more money. Let's see if they can be bothered to do so. My view is that they are bone idle and won't bother to recover this public money.
Thanks for posting this.
Would there not be grounds for a joint class action against the company/companies by thyroid patients denied T3? If the NHS won't act, then why not the patients who are directly affected (or their representatives as it would likely be a bumpy ride)?
Possibly a class action against the NHS but we would stand no chance against the companies. As they point out the Government and NHS has never challenged the price increases.
Is not the NHS/government culpable therefore by not challenging the price increase?
There is the balance between the wise use of public funds and the edict to do no medical harm. They have adhered to the first in withdrawing T3 treatment but violated the second.
They should have adhered to the second while preventing the first. But, as we know and has been pointed out in other responses, it was expedient to pursue the course of action they did.
My apologies to Lyn if we are straying off the subject of her post.
Many would agree with you.
I know little about how to challenge their decisions to just acquiesce to the price rises. I think we need people with legal and political backgrounds to pick this up.
There are some politicans who have a background in the law at senior levels. It just might be worth going through your own MP, or party organisations, in order to get this properly investigated.
The Department of Health are advised in advance of these price increases but they have never objected. This has been going on since the 1990s so it applies to all politcal parties. Not much happens because it is not a major political issue.
I think it would be better to focus our efforts and getting liothyronine for more patients rather than being distracted by past events. We could use this latest news to assert that the guidance now needs to be updated to reflect the new status.
Well after a couple of years of private treatment for Liothyronine (four thousand in total) NHS referrals blocked as I (don't fit the reference range) I would be extremely interested in class action Lawsuit. Be interestd to see who picks this up and may want to run with this with regard to MPs and Solicitors. Am on left-wing twitter so will keep an eye out ...
i'll talk to anyone. global experience.
I have emailed you Lyn , I hope this is the start of something better for us hypos !
lynmynott I have emailed you.
There is a lawyer on the ITT facebook page who wants to initiate a class action.
Perhaps someone would be able to make information available other than on facebook for those who prefer not to sign up to that company?
Case Study Needed for Popular Women's Magazine
