T3 fight the good fight

[Airmed]

Sent this to Author of today's article in the Times

Dear Billy Kenber,

Fantastic article in the Times today. Is there any chance you may be doing a follow up on how these price increases actually affect real people, people who are unwell and systematically having their medication taken off them due to cost. I am particularly talking about liothyronine (T3) the ONLY licensed product in the UK for thyroid patients who don't thrive on Levothyroxine (T4). The consequence of this action is people have to self medicate and resort to purchasing liothyronine off internet sites and abroad which every one knows can be dangerous. But desperate people have to resort to desperate measures. I would also like you to know that Aventis-Sanofi sell Cynomel, branded (T3) for approximately 1.8Euros for 30 tablets over the counter in France, with a Prescription. Mercury Pharma charge the NHS £104 for 28 generic T3 tablets. By coincidence I contacted Aventis today asking whether it would be possible for them to market Cynomel in the UK because of what is happening to people like me and why NHS are stupid enough to pay rather than licence Cynomel. Members of HealthUnlocked Thyroid forum, to which I am a member have been concerned for a very long time about the increase in cost in the UK for T3 and the fact Mercury have a monopoly. We could see the writing on the wall so to speak. Our worst fears have come to fruition with some members having had their prescriptions stopped and appeals to the CCG being of no use. It seems the NHS answer to these obscene price increases is just to stop patients having it instead of licensing another product. Many more of us, me included are waiting for a call from our surgeries to say we are no longer eligible for T3 and going back to a very poor quality of life or sourcing medication from unregistered sources. I will tell you my story from thyroidectomy to present day as I am sure will many off the Forum if you are interested in doing an article.

Yours sincerely ( a very fed up, T3 reliant person caught in the crossfire of avarice and idleness).

[Jazzw]

Great idea! Good for you.

Though liothyronine is actually even more expensive than that. According to the BNF:

Tablets, scored, liothyronine sodium 20 micrograms, net price 28-tab pack = £152.18

[Josiesmum]

Well done on getting the word out about how this scandal is affecting patients' health.

[Butterfly65 in reply to Josiesmum]

The thing is Josiesmum it needs more than just a few people to do as Airmed has done to make a big enough impact. They need to be inindated with emails about how this scandal is affecting the health & life of 'everyone' who needs T3 to feel well.

However, we live in a world where people seem afraid or can't be bothered to speak up for their own rights & leave it to those few who can be bothered, which is a crying shame.

[jimh111]

Nice letter. Airmed and Jazzw: You are both wrong. Liothyronine is £258.20 for 28 tablets as of 1st March 2016. Note that the links on some NHS sites are out of date. I got this price from a current copy of BNF and also a helpful e-mail from AMCo a couple of months ago!

[Josiesmum in reply to jimh111]

Crikey.

[Airmed in reply to jimh111]

Thanks jimh111, blinkin 'eck. must get facts right by tomorrow before Billy Kenber calls.

[Jazzw in reply to jimh111]

Yikes.

Sorry to mislead I used the NHS evidence version of the BNF and it's clearly not kept up to date.

[Airmed in reply to Jazzw]

No worries jazzw we got there in the end and that's the main thing, Thank you just hope he does the story.

[Anthea55]

Once upon a time we had the Monopolies Commission? In it's place we now have the Competition and Markets Authority (CMA )

gov.uk/government/organisat...

Do they know about these problems?

[Airmed]

Thank you for info.

[Marz in reply to Airmed]

You could also mention a pack of 30 x 25mcg tabs in Greece costs 1.15 euro which can be bought OTC WITHOUT a prescription

[Airmed in reply to Marz]

I most certainly will Marz, thank you.

[Josiesmum in reply to Marz]

I slightly worry that if these greedy predators find out they will see this as an opportunity to up the entire supply for €1.15 a pack and start charging £260.

[Marz in reply to Josiesmum]

You have a point josiesmum

[Airmed in reply to Josiesmum]

Don't worry josiesmum. Pharmaceutical companies aren't that stupid. There is monopoly situation going on in the UK with equity companies running the T3 show which is not happening in the rest of the world. If somebody was doing their job properly it shouldn't be going on in the NHS either. This particular outfit found a way to exploit the NHS put in 100% effort with a hefty return on investment. That is what equity companies do. It will be interesting to see what else is uncovered in the next few months. The tree has been shaken. Let's see what else falls out. T3 meds aren't new technology either and cheap to manufacture. Markets in countries where there is healthy competition shouldn't see any price rise. Pharma companies will probably just see income from T3 sales as a few quid on the bottom line. Eureka moment. I used to work for a pharmaceutical company, manufacturing/product development etc I'll make my own. I could have T3 parties, makes a change from Avon or Tupperware.😂. No I think Marz place in Crete is a much better option.

[Salcombe in reply to Marz]

Could you PM me, please with details of how I can get T3 from Greece at this price without a prescription? Many thanks.

[Marz in reply to Salcombe]

Many people have asked the same question - so post the request in a new post and ask for replies by PM. Not able to help you as I do not order them on-line - people will respond

[jimh111]

I've just gone into the BNF and I see a price of £198.62. MIMS mims.co.uk/drugs/endocrine/... is showing a price of £258.20. The BNF is an indicative price so perhaps it is not up to date, or the NHS is getting a 'discount'. However, historically the NHS England reports show that the NHS have been paying the full price.

[helvella in reply to jimh111]

Over the past few years, the people who put the BNF together have put a lot of work into improving their indicative pricing. It used often to be wayward and quite a long way behind reality. My perception, based on very limited information, is that it has improved.

However, the information available for May 2016 is surprisingly this:

Tablets, scored, liothyronine sodium 20 micrograms, net price 28-tab pack = £152.18

evidence.nhs.uk/formulary/b...

[jimh111 in reply to helvella]

Which is different from the £198.62 you see if you go directly into the BNF using their MedecinesComplete application. I think the MIMS £258.20 price is the correct one as per my e-mail from AMCo.

[helvella in reply to jimh111]

Odd, isn't it.

[Aurealis in reply to jimh111]

Both my GP and two pharmacies have quoted £258 to me over the last week. I don't know what sources they were using to look up the price

[Airmed in reply to Aurealis]

Hi Aurealis, it does seem funny that all these different costs are being posted. The reality is they are probably getting the info from mims or the BNF depending what edition they have. Gosh I'm getting cynical In my old age! I think we can safely say the NHS is being hugely ripped off as we know for definite from marz that generic T3 can be purchased without prescription for 1.1Euros in Crete. Any pharma company reading this post and can beat 1.1Euros apply to Jeremy Hunt UK NHS for contract.

[mrsm49]

Hi Airmed, whatever the price to the NHS it's still ridiculous. From a thyroidless lady that may well need t3 at some point if not now a big thank you for your letter, I hope it prompts further investigation. Xx

[SilverAvocado]

Airmed, really excellent letter. Thanks so much for doing it!

[Airmed in reply to SilverAvocado]

We have to do something now. I have just written to my MP Sarah Wolloston asking her for reassurance that my T3 NHS prescription will not be compromised because of avarice and apathy.

[nightingale-56]

A well thought out letter Airmed, which covers most points we want answers to. The price of T3 from Mercury Pharma seems to be going up each time it is mentioned on this forum.

[Airmed in reply to nightingale-56]

Hopefully the NHS will be see the light and license T3 from other companies. Healthy competition is vital to get the best value for tax payers money as we all know. The CCG won't get away with just wiping T3 off their prescription list without a fight now either. If they do, they risk making themselves look incompetent and taking the apathetic approach too. There has been such a commotion about this situation, rightly so, and Billy Kenber (The Times reporter) has done us all a favour by highlighting the situation. I bet there is more to come too. I feel a bit vulnerable with NHS T3 supply now but I'm sure if the price of T3 kept on rising we would all have systematically have had our NHS scripts cancelled with no reason. Now it's more than obvious if the CCG try to stop T3 scripts. Ministers views are that T3 cannot be taken off a patient on cost grounds alone. We will have to see how this pans out I guess.

[nightingale-56]

Airmed, I have been told I can have another T3, but as I have a year's supply already, I have not tested this out. I have also been allowed Aliud Levo, but they are making this as awkward as possible by saying they cannot send a prescription electronically as the particular Pharmacy where I can get it from is out of area. The Pharmacist there is quite cross as says they can send a prescription electronically to the other end of the country. I was pretty sure they could do, but quite expected to have to collect it myself. It is at least a 30 mile round trip and I am a bit worried in case there comes a time when I will be unable to do this. I am on Aliud because the same company who have put up the price of T3 so much, AMCo were also the company who have caused such awful skin problems in my son and me with the change to their generic T4 six years ago. We stuck it for 3 years, but another 3 years further on with other makes of T4 we are still having skin problems.

[Scazzoh]

this is a copy of the email I have just sent Mr. K.

Dear Mr. Kenber,

I read you article with interest. As a patient with thyroid disease, my endocrinologist has just recommended that I take liothyronine. However, given the huge price increase in this medication, I am expecting that the discussion I have with my GP will not be about clinical issues, but if and how the medication will be funded. I do not want to have to self medicate, but, not having worked for 3 months due to the crippling consequences of being on the standard medication, I fear I will have to source the medication online and am already making arrangements to do this. I plan to let my GP know that this is what I am doing, as liothyronine is a strong drug which is dangerous if not administered properly. If I do not take liothyronine, my health will inevitably fail, with longstanding devastating consequence for myself and my family.

Yours sincerely,

[Airmed in reply to Scazzoh]

Scazzoh, fantastic letter but sad too, the additional stress involved is getting to all of us. Glad you got T3 off endo. The exposure by Billy K may have done us a favour. We could all see the writing on the wall but I for one didn't know why. It may make things with GP a little easier as Ministers directive is that T3 cannot be withheld on cost grounds alone. If GP refuses explain that you will self medicate until such time an NHS script is available. Then write to Sarah Wolloston and your own MP and ask them to contact your GP. Wishing you well.

[Scazzoh in reply to Airmed]

Thanks Airmed. I'll bear all that in mind. Am awaiting yet more blood test results before a return to GP next week. Only had them done a month ago. Nothing is going to change after two years of feeling cr*p! In relation to the T3 scandal, I always think a bit of direct action never does any harm. Would have to be organised though. Chaining ourselves to hospital railings a la Suffragettes, maybe?

[Scazzoh]

This is the reply I have received from my email to Billy Kenber

'Thank you for your note. The liothyronine situation seems to me to be an absolute scandal and I hope the authorities will finally take action. Patients such as yourself are clearly in a very difficult situation at present in having to consider buying drugs like this online

Best,

Billy

'

The revolution starts (or continues) here......

[Airmed in reply to Scazzoh]

He's a great guy and hopefully done us a great service.

[FlippinThyroid]

May be it's time for the NHS to prescribe Armour thyroid. Surely that's cheaper and it works. Regulators can set pricing controls called price caps in order to prevent a company from setting unreasonable prices. Price capping is a way to reduce the price benefit of being a monopoly as the price lowers to that of a competitive market. Isn't it possible for the government to halt this type of monopoly in order to ensure prices are in the best interest of the public. Or don't they want to..? Possibly because they want to privatise medicine.