Motion to Regret - House of Lords re Liothyronine - Thyroid UK

Thyroid UK
109,870 members127,679 posts

Motion to Regret - House of Lords re Liothyronine

lynmynott
lynmynottAdministrator

Lord Hunt of Kings Heath has secured a Motion to regret - Branded Health Service Medicines (Costs) Regulations 2018 on Wednesday 20th June in the House of Lords at around 7pm.

calendar.parliament.uk/cale...

The actual Motion is:

Lord Hunt of Kings Heath to move that this House regrets that the Branded Health Service Medicines (Costs) Regulations 2018 do not propose any action to be taken in respect of the high cost charged by Concordia and other companies for the drug Liothyronine for the treatment of hypothyroidism thereby depriving patients of the use of that essential drug, and further do not put an end to the practice of a growing number of Clinical Commissioning Groups refusing to follow the latest guidance from NHS England on making that drug available to NHS patients via referral to thyroid specialists (SI 2018/345).

This means that the House regrets what is happening to thyroid patients so we are very grateful to Lord Hunt for helping us.

Basically debates are held to scrutinise Government. You can find more info here: parliament.uk/business/lord...

Lyn Mynott will be having a meeting with Lord Hunt prior to the debate and will also be attending the debate.

We will keep you informed of what happens.

90 Replies
oldestnewest

Not sure I understand how the motion is written. It sounds like a negative. What does it actually mean? What's he going to do?

lynmynott
lynmynottAdministrator in reply to FancyPants54

Basically debates are held to scrutinise Government and Government should respond. It's another way of raising awareness and we are hoping that we can then progress to further scrutiny.

But to me it sounds like it means they don't propose to do anything about it. I think it must be the way it's worded. It just sounds like the opposite of discussing it with a chance of action.

lynmynott
lynmynottAdministrator in reply to FancyPants54

It's Parliamentary speak but it means that he is helping us. The house regrets what is happening to thyroid patients. :-)

I get it! Sorry.

It sounded backwards to me.

lynmynott
lynmynottAdministrator in reply to FancyPants54

No probs! You are not the only one. It does sound backwards! :-)

yes i read it like that- in other words tough on us but we wont be getting t3? blme it on the brain function of lack of hormones!

One of the things that I find very frustrating regarding T3 is why the NHS doesn't do something about the high cost. There is never an explanation.

My suspicion is that the reason is due to corruption. A group of already-wealthy people with plenty of power get kickbacks from Concordia (and now the other companies that have jumped on the bandwagon) to let them sell T3 at an outrageous price.

Another possibility is that Concordia gets permission to sell T3 at an inflated price as long as they lower the price of some other drugs. The people who need T3 are (in population terms) a fairly small group of people who are mostly female - and we can safely be ignored because sick females are very low down in the pecking order of importance in society.

I realise I'm just speculating. But the temptation to do so is huge because we get no real information. Government and the NHS and the pharma companies just remain silent on why they don't reduce the cost. And they tell lies about it being "special" and "hard to manufacture". Which is just a bunch of *****.

lynmynott
lynmynottAdministrator in reply to humanbean

I saw a letter from an MP that said they won't do anything until the CMA have made a final decision. That's when they can claw some money back! Says it all!

humanbean
humanbean in reply to lynmynott

Is there any indication of when that might be? Weeks? Months? Years?

TaraJR
TaraJR in reply to humanbean

I've heard that CMA's final decision should be by the end of 2018. But then Concordia can appeal again I think. It could take years. And yes it'd be good for the NHS to claw back some money. BUT... they need to sign a contract with someone else for a cheaper brand eg Thybon Henning. Why on earth is that not possible? I wonder...

humanbean
humanbean in reply to TaraJR

Too many people with too much money to make who don't care about sick people.

kluang
kluang in reply to TaraJR

how many people have to die first, seems to be the point

loueldhen
loueldhen in reply to TaraJR

Very unimpressed with lord o’shaughnhessy’s response on that which was along the lines that small differences in formulation have a large effect therefore you can’t guarantee performance therefore we can’t source from Europe. Ask the patients if they’re happy with the formulation of the European product. Makes you feel sorry for all those Europeans existing on thybon henning or santoz.

lyn cant you bombard them and state how badly we need this.

lynmynott
lynmynottAdministrator in reply to bluepettals2

Unfortunately, bombarding hasn't worked in the past. We've got this far because we've taken advice on how to work with Parliament etc.

i remember the lady from thyroid patient advocacy always writing to government and campaigning about t3, i wonder how far she got before she got ill,does anyone know how she is, icant even remember her name.

She's Sheila Turner. A lovely charismatic lady, I used to volunteer for TPA. It was a while back but I remember she did not have that much success, unfortunately.

kluang
kluang in reply to Sybilla14

but she helped so many people and I am amongst those that owe my life to her for the support and help in self treating and sourcing pills

helvella
helvellaAdministrator in reply to humanbean

Given that we have seen issue after issue with levothyroxine - going right back to 1956 or so up to now - I suspect that liothyronine could well technically be easier to manufacture.

It is always difficult when one product massively overshadows the other in volume to make much of statistics. There are also many fewer makers! Nonetheless, there do not appear to have been many recalls of liothyronine even if we are aware of many complaints.

Nanaedake
Nanaedake in reply to helvella

Even if it isn't easier to make, any problem with it is likely to show immediately so people don't have to wait 6 weeks until realising something is wrong, then another 6-8 weeks to get back on track. In combination, perhaps it makes up for levos shortfalls, like absorption issues? Just hoping they make it available soon.

Hidden
Hidden in reply to humanbean

I just filled my 2nd prescription for liothyronine and the price went up 5 USDollare in one month. It's getting expensive here too. Don't know why but someone is making money.

humanbean
humanbean in reply to Hidden

I could have got my facts wrong, so take this with a pinch of salt...

The concentrated T3 powder used by the various manufacturers of T3 tablets all around the world came mostly from one source. I don't know the name of the company. But whatever it was I think the company that produces Armour Thyroid has bought it. And the price of T3 powder has started rising and rising. I think it will rise so far that most people won't be able to afford it, and it will only take a couple of years at the most for that to happen before it is out of reach of all but the wealthy or the very well insured.

Armour Thyroid itself is already the most expensive NDT in the world and must have lost a huge proportion of its market share.

The pharma companies want us all taking Levo. Then they can make so much more money supplying pain killers, sleeping tablets, statins, blood pressure tablets, gut medicines and everything else that needs fixing when hypothyroid people are poorly treated.

For the accurate facts, rather than my fuzzily remembered ones, we'll have to ask helvella

helvella
helvellaAdministrator in reply to humanbean

Afraid I know next to nothing about sources of T3 active pharmaceuticial ingredient (API). At one time I thought Sandoz in Austria were major players, but I have absolutely no firm evidence as to whether they were, are, or will be in the future. No idea where, for example, Pfizer, Mylan, Mercury Pharma, etc. get theirs from.

It is easy to find T3 API available on Alibaba in industrial quantities - but does any western manufacturer (or Eastern, for that matter) source any from China?

Amrour Thyroid, formely Forest, is now part of Allergan (renamed from Actavis but not to be confused with Actavis - now Accord - in Devon that produces Actavis levothyroxine).

helvella
helvellaAdministrator in reply to helvella

A hint of information is here:

pharmacompass.com/manufactu...

Interestingly, lists GSK producing "CYTOMEL IMPLANT PELLETS (VET)"!

Hidden
Hidden in reply to helvella

An interesting list. I have gotten many meds from Sandoz (Germany) and never had problems but as the little transparancy that has been available in the past seems to be disappearing can we really know which countries supply Pharma with their raw materials (both active ingredients and fillers)?

humanbean
humanbean in reply to helvella

Well, I'm glad to see that there appears to be more than one supplier. But, of course, I don't know market share of each of these sources. There might be one that is way ahead of the pack.

Bettan
Bettan in reply to helvella

Wow this is specially interesting: "..lists GSK producing "CYTOMEL IMPLANT PELLETS (VET)"

Well, it’s a running joke on here that we’d get better treatment from a vet!

shaws
shawsAdministrator in reply to Fruitandnutcase

Yes, we have certainly said that before - that animals who're hypo get diagnosed more easily than humans.

Furface
Furface in reply to shaws

And vets recognise that some dogs with hypo have conversion problems, so they are given T3. This could hardly be put down to dogs insisting that their Levo doesnt work!

humanbean
humanbean in reply to helvella

I suspect the names get changed (and duplicated) to prevent people and governments from keeping tabs on their activities. :(

helvella thanks for clarifying some muddy waters.

LAHs
LAHs in reply to helvella

Thanks for clearing that up, it always mystified me as to why every time I go to get my refill - about every three months - it has a different maker on it. Oh, and it costs about $20 more each time. It started at $30 now it's $130.

Polly91
Polly91 in reply to helvella

Hello

Do GPs prescribe Armoir thyroid or is it all part of the same problem i.e. They don't believe (or want to believe) that T3 is necessary in thyroid replacement so will not prescribe?

Thank you

helvella
helvellaAdministrator in reply to Polly91

It is a series of fences (bit like the Grand National!) - find a doctor, any doctor, who will decide to prescribe Armour (or another desiccated thyroid product), then get a pharmacy willing to get hold of it, then a doctor who will repeat prescribe it. Along with that there may be arguments with local management (CCGs in England) who try to stop its prescription, and other doctors who regard it as voodoo which must be stopped, even pharmacists who think they know better. One endocrinologist might dive in and say that the patient should never have been prescribed Armour. Puts a helpful GP in a difficult position.

In 1928 (so I find if I look it up), there were only two finishers in the Grand National. It feels as if we are heading towards there only being two patients prescribed Armour on the NHS...

Polly91
Polly91 in reply to helvella

Why does it have to be so painful. We pay our taxes , try to live healthy lives so minimal burden on NHS, educate ourselves through patient forums, but when it comes to getting a prescription for medication we need we don't stand a chance.

Fences are as high as a high jump bar!

Rapunzel
Rapunzel in reply to helvella

I'll be shot for refusing to jump a fence well before then, Rod... :(

lynmynott
lynmynottAdministrator in reply to Polly91

I'm afraid it's all part of the same problem but with T3 it has been consulted about. NDT is the next campaign for us! :-)

HiddenThis reply has been deleted
lynmynott
lynmynottAdministrator in reply to Hidden

I've just checked and the Policy for Berkshire West CCG (I can't find one for Berkshire) is dated Nov 2015. It states Brown (not to be prescribed). Is there a later policy, do you know i.e. since the NHS decision?

HiddenThis reply has been deleted
HiddenThis reply has been deleted
lynmynott
lynmynottAdministrator in reply to Hidden

If anyone is refused T3, please ask for this in writing and we can then use it.

Hidden
Hidden in reply to humanbean

The premise seems logical to me and right in line with how global healthcare systems think. No matter what the rank and file have to pay or do without the 'fatcats' will always have the drugs and medical care they need.

I'd be quite happy to take Levothyroxine only if it was as good as Goldshield or Norton were. The present makes are not up to the same standard at all.

LAHs
LAHs in reply to nightingale-56

Yes, I had perfectly good luck with Forest's Levothyroxine, then they disappeared and I had horrible experiences with all other subsequent brands. I tried them all, the cheapest and the stupidly expensive, none of them worked nor were as good as Forest. Thank goodness I manage to find an Endo who let me have NDT.

artie
artie in reply to humanbean

Yes why doesn’t the NHS speak out !

I couldn’t find your name in the latest Honours List, Lynn; why is this? A mistake, surely.

lynmynott
lynmynottAdministrator in reply to penny

Ha Ha!! That would be fun! :-)

shaws
shawsAdministrator in reply to penny

I agree. What other charity started in their home and then progressed to a Shed in their garden. Also the family must have rallied round as they knew how Mum improved when she switched from levo to NDT (I believe) and then was a "woman on a mission" like many us on this forum. Lyn and Diana Holmes began TUK and Diana wrote a book 'Tears Behind Closed Doors' which I thoroughly recommend. She was, finally, helped by consulting Dr Peatfield. She then went on to work with Dr Skinner.

Any person who has found the benefit of this forum can become a member of TUK and it is not expensive - History below:-

thyroiduk.org.uk/tuk/About_...

thyroiduk.org.uk/tuk/member...

Hidden
Hidden in reply to shaws

Even those of us in the US. I get a lot of valuable info and tips from ThyroidUK to fight my own thyroid battles here in the state. I joined in May. Was a little confused about how to pay in Pounds (sorry no icon) and finally just looked up Dollars to pounds conversion, sent a check written in USDollars for an amount that would cover the fee when converted. It took about 1-2 months to clear my US bank but worked out fine.

shaws
shawsAdministrator in reply to Hidden

That is very good of you and TUK do work on a shoestring, so membership as it expands makes us more powerful to try to change attitudes which are basically, I believe, Big Pharma's ideas as it wouldn't do if the thousands of hypo patients recovered and didn't need the 'extras' for the remaining or extra clinical symptoms which can be caused through inefficient doctors/endocrinologists.

Hidden
Hidden in reply to shaws

Ironically the information (@#$backward as it sometimes is) I get from NHS denials and NICE guidelines helps me formulate solid background arguments I use with my US doctors that don't want to provide care I know I need. Sometimes my docs have even changed their thinking! So it's win-win. They learn and I get my treatment. Hope they don't figure this out too quickly or I might be back to square 1. lol 😊

shaws
shawsAdministrator in reply to shaws

I've just had a thought - if anyone else from abroad wants to donate they can send by Paypal which probably would be easier all round :) that is if they were members of Paypal.

Hidden
Hidden in reply to shaws

Good idea. I guess I went the long way around-looking up conversion rates, etc. Also, may just be my suspicious nature but here in the US there is so much hacking and identity theft that I have become leary about where I put info (CC #'s, etc). So I mailed a check from my bank. About six years ago someone attempted to change my bank where my Social Security check is directly deposited. Fortunately I caught it early but sorting it out was a nightmare. Since my computer skills are pretty basic I don't always know if a site is safe so I tend to pay bills by phone or mail. Just my own craziness and distrust of technology.

LAHs
LAHs in reply to Hidden

Yes, 6 months ago I bought a couple of bottles of HP sauce from England via the Internet, someone usurped my CC# and bought themselves a computer! Fortunately the CC company sorted it out and I got my ~$2000 back - scary.

Ginny52
Ginny52 in reply to shaws

O god, Tears at the Table in my house, no self-control

Thank you Lyn for helping to push this.

I, Peter Warmingham and Jonathan Leahy will be going to meet Leeds CCG next week. Among other things we want to try to rationalise with the CCG what their attitude is to T3 treatment either in combination or alone. Also we want to bring up the ongoing cost of T3 in the UK, and why cheaper, equally well controlled sources are not available. It is absurd that say at Dover, a tablet costs £9, whereas 30 miles away in Calais, it costs pence. Also I'd like to challenge the basic ethical morality of permitting those who use T4 only to do this free of charge, yet patients who require T3 and are refused it must consequently pay large sums to maintain health. The lack of thyroid is a chronic problem lifelong, and any treatment should morally be available on an equal basis. Finally I want to bring up the gross deficiency in prescribing T3 to those who need it. From UK NHS figures of T3 spend and the average cost per tablet, I estimate 58000 men and women in the UK will require T3 in some form, whereas less than 7000 actually get it. Also of course there is the ehtical problem whereby path labs have taken it upon themselves to decide what tests to do and what not. This is again ethically indefensible, because decisions are made without any knowledge of the patient whatsoever. All the labs should do is a) do the tests requested by the GP, and b) ONLY flag up without further comment if any results are out of range. They have no further right to interpret - that is NOT their responsibility.

humanbean
humanbean in reply to diogenes

I wish there were some endocrinologists in the NHS that thought like you, diogenes. *Sigh*

HiddenThis reply has been deleted
OzoneGirl
OzoneGirl in reply to Hidden

Where can we find out (officially) who these two Endos are please?

louhop
louhop in reply to diogenes

Can I ask why you are tacking Leeds CCG in particular - only asking because I come under it and would like to know its attitude to T3. Am close to the start of my Hashi's journey but suspect I will end up self-medicating at some point.

diogenes
diogenes in reply to louhop

Jonathan Leahy worked for the Department of Health 1999-2013. He currently works in both the Department of Health’s Patient Experience team and in NHS England’s Public Participation team helping people and communities get involved in designing and delivering NHS services. He takes NDT. His local CCG is Leeds. He has never been diagnosed as lacking thyroid activity and has self medicated successfully. He is indignant about the way T3 is being sidelined.

Marz
Marz in reply to diogenes

Gosh - a greatTrio of minds. Please let us know what happens.

Kitti1
Kitti1 in reply to diogenes

I do hope your meeting goes / has gone well.

May I say I think your notes for this meeting would be extremely useful to others wanting to challenge their own CCG on the same matter. Would it be at all possible to make these available to others in some way. One facility of the ITT campaign Facebook page is a documents section where members can download papers from the site. I'm sure many members there would be extremely grateful for such a resource. Although I'm sure alternatives methods are available.

Aurealis
Aurealis in reply to louhop

Using google, you will be able to find out attitudes to T3 by local CCGs in various Council areas

louhop
louhop in reply to Aurealis

Thanks Diogenes and Aurealis!

Aurealis
Aurealis in reply to diogenes

Thank you Diogenes, there are huge ethical, moral and equality issues associated with all of this, so pleased that you refer to this.

loueldhen
loueldhen in reply to diogenes

Very disappointed at lord o’shaughnessy’s response to sourcing from Europe. It’s at 19:10:46 in the debate. Uses protection of patients from poor formulation as an excuse. Perhaps Concordia provided him with that suggestion. Makes you feel sorry for all those poor Europeans ‘surviving ‘ on thybon henning and sandoz.

lynmynott
lynmynottAdministrator

Looking forward to the outcome of the meeting. If it goes well we may be able to replicate with other CCGs.

TaraJR
TaraJR in reply to lynmynott

Absolutely Lyn. People must contact CCGs. Sadly we all have to do this. In Norfolk we're doing lots re CCG 'banning' T3. Mind you it's like wading through treacle blindfolded with your legs tied together. Such a mire of bureaucracy

Thank you so much Diogenes .

I wrote to my MP-Oliver Letwin about all this, using the TUK template and received a reply on 1st June forwarding my letter to Dorset CCG saying: "I would be grateful if you could let me know what the current situation is and whether the CCG has plans to make this treatment available to those patients who can benefit from it?"

At 'my ' surgery patients on T3 are being taken off it with the full backing of the local Endocrinologist.

I'll let you know if anything useful emerges!

Umm - a 7pm start ! Lets hope they have a modest lunch and skip the G&T 's at 6 pm. 😊

lynmynott
lynmynottAdministrator in reply to Marz

He thinks it may well start a bit earlier now so I can see G & T's immediately afterwards! :-)

Kitti1
Kitti1 in reply to lynmynott

Fantastic debate and a wonderful achievement. Many many thanks Lyn

Good luck Lyn. I'm keen to know why, despite the endo making me an exceptional case, my GP says he can't prescribe and I had to go through an IFR via the hospital and CCG but he has let another lady have it. It's bad enough having CCG's make their own decisions and being a post code lottery but it seems GP's then do the same.

Lynn, thank you from the bottom of my heart for all you do for us. You have helped me personally on more than one occasion over the years, by message / email I think in the days before this site. I for one do think you deserve an award. x

lynmynott
lynmynottAdministrator in reply to Aurealis

Aw, thank you Aurealis! x

DippyDame
DippyDame in reply to Aurealis

Could not agree more...

shaws
shawsAdministrator

I have just received a response to my letter to my MP today that she couldn't attend on May 21st but I don't think she's aware it was cancelled. I have told her about today's debate but she may already know of this. If she responds to today's email I will know whether or not she was present.

Hi Lyn,

After being prescribed NDT for many years, my GP has just stopped it on advice from their CCG. I’ve tried battling but they won’t back down. They refuse to give me a private prescription either.

lynmynott
lynmynottAdministrator in reply to Daisy48

Ask him to put this in writing and send us a copy. Ask for a referral to an endo as this is what NHS England is saying. We also need to know which CCG.

Thanks for the informative post, I was just scrolling through old posts as my surgery states they are unable to specify Mercury Pharma liothyronine on my prescription as it doesn't exist (?) even though I've been taking it for 14 years. I was under the impression Concordia was forced to lower it's prices in line with Teva and Morningside, both of which I've either had side effects with or poor response. Does anyone know what's going on?

lynmynott
lynmynottAdministrator

Just the wording "liothyronine" should go on a prescription and you can then try to get the generic you want.

No, Concordia has not been forced to lower its price yet. Competition is supposed to encourage them to lower their price but since the other two companies only put their products on at around 50p less, that's not going to work very well. It may reduce the price by a very small amount over the next few years at the rate it's going!

You may also like...