Bylines has been growing hugely in coverage and influence. So good to see thyroid and liothyronine covered in this informative article. Not so much for those of us who have seen it every step of they way - but for everyone else.
Big Pharma pays the price, but some thyroid patients are still paying
Advanz Pharma will finally have to pay millions in fines for price hikes, but many patients still have problems getting the drug they need.
by Judy Copage
23-08-2023 17:07
Thanks for this Helvella. Much appreciated.
This is good news but as the article states, the legacy of the price hike will effect us for many years to come.
Last week, I finally got the go ahead for T3 on the NHS after a lengthy trial. My endo was aware they may be problems with the prescribing. This is an excerpt from the letter he sent to my GP that I was copied in on…
“I have asked Mrs X (me) to sound out your views on whether you would consider taking over the prescription for Liothyronine, now that it’s necessity has been confirmed. However, of course I would be happy to continue prescribing indefinitely IF THE LOCAL FORMULARY REGULATIONS DO NOT PERMIT…’
Which is basically admitting it’s a postcode lottery, I guess based on perceived ideas of cost.
Although I am pleased to be one of the lucky ones, I know this is the beginning of my T3 prescribing journey. My endo could retire at any time. I am scared to move house. I am aware it is written in guidelines that another GP or Endo could disagree with his careful assessment. Local ‘ formularies’ may refuse… argh
Any advice on how to get the to prescribe and how to ensure I keep it for the rest of my life. Or would it be in my best interest to leave it with the hospital. What if I want to move county in the future?
If you are up for it, you might consider asking the body responsible for LOCAL FORMULARY REGULATIONS the basis for them, e.g. by Freedom of Information request.
If they have not been reviewed since liothyronine prices have changed, then they obviously need to be!
(Wouldn't blame you at all if you decide not to and feel it might rock the boat. But if already refused, it probably won't make anything worse.)
So a quick google, found the formulary page for my area. Liothyronine is listed as Amber and the recommendation is (I think) to prescribe capsules as they are cheaper. They talk about shared care, but when you go to any of the specific links. Eg ‘recommendations for prescribing combination therapy for inadequate response to levothyroxine’ or what is amber, all the links are broken which is frustrating. My endo didn’t mention a ‘shared care’ arrangement.
As McPammy mentions below, it’s the restriction on peoples lives and minds that is a huge issue. It should be a given, you get diagnosed, you spend 10 years finding the right treatment, you should be given it for the rest of your life. Not this, another clinician may disagree, a GP can ignore a consultants recommendations. The local formulary can refuse to prescribe the drug, and then because of that, you end up ill and given a non helpful dianosis of CFS or fibromyalgia…. I am mixed, angry, fearful and pleased!!
The current prices do not even agree that capsules are less expensive (at 20 micrograms).
helvella.blogspot.com/p/cur...
We expect updated tariff later today or on Tuesday.
Just found the shared care guidelines… I took note of the GPS responsibilities. This is going to be fun!
Primary care monitoring:
− Initial biochemical monitoring will be undertaken by the specialist until a regimen is established
− Monitoring is by TSH levels measured from blood tests taken prior to the morning medication.
− Initially and following a dose change a repeat test will be required at 6-8 weeks. After dose stabilisation, monitoring should only be required annually unless there is a change in symptoms that may warrant the checking of TSH levels.
− The aim of the treatment is to maintain TSH of 0.4-2.5mU/L with theT3 and T4 in the normal range.
Actions to be taken in response to monitoring:
TSH Level
Action for GPs
More than 5 mU/L - Increase levothyroxine dose by 25microgram
0.4 – 5.0 mU/L - No change required
Less than 0.4 mU/L - Seek specialist advice, likely resume at lower dose.
I have thought all these issues myself about my future and continued prescribing of T3 liothyronine. I get mine from the NHS but I also keep a private route open. The NHS refused to prescribe even when a private only trial was very successful. Eventually the NHS gave in and prescribed it for me. I was threatened at that point by my NHS Endo that if my TSH ever went suppressed he would automatically stop prescribing it, which terrified me. I now ensure my TSH is in range as much as possible. I also keep contact with my private only endocrinologist. We were thinking of moving home to a different CCG area, my biggest fear was losing the T3 medication. It’s a big restriction on many peoples lives and minds.
Interesting a firm based in London with a huge fine. It is not up to the NHS to agree a forward price for Medication, I wonder. Or course they are not using their own money but the people's hard earned cash. Surely someone should be accountable for the price increase if the firm or firm's in question can raise the price they will.
Is there a reason why the NHS are not finding cheaper alternatives, In the meantime it's only the patient that suffers what a shameful thing.
I live in France in a small Town that has an old cottage type hospital. A brand new one is being built to relieve hospitals of patients that could bed block. There are many things wrong with living in France but the health system is great. It is so regimented throughout France but it works. Same day face to face appointment with a GP, I could go on.
Members of my own family still work in the NHS and are so disappointed with the way it's going downhill.
The whole process of approving costs of medicines is obscured by "commercial confidentiality" and wholesale lack of openness.
Do you know who gets the money from this fine? Is it the government? Can we write to our MPs saying we know this money has gone into an NHS coffer and press for better treatment using T3? Or even press our GPS and ICGs (or whatever they are called)? to treat us better? I live in a total blacklist area, where no reference is made to cost but reference only to ‘guidelines’ written mostly by PSP, who publicly has mentioned cost but off course no mention of cost (if I recall) in the NHS guidelines themselves.
I do not know but many fines end up going to the treasury.
Maybe contact the CMA and ask?
Ok that sounds like a god idea.
One can only hope that it will get better. This fine is a good thing but it's so hard to fight against lack of openness. Things have been going downhill for years I can't imagine what the solution is, if there is one it's going to hurt a lot of patients before that happens. My own nephew, who is a stroke consultant moved hospital and home because the Manager there would not adhere to his advice which was to help and protect his patients.
In my view, there are two elements to fines in justice systems.
A retributive element - as when there are there to deter (some hope!) and act as a sentence.
A restorative element - as when they are there to restore the status quo ante (try to turn the clock back to before the offence). A fine which in some way approximates the excess pricing would appear to be restorative. Thus entirely reasonable to think of that element being used to do precisely that.
A larger fine then appears retributive and I can see it going to general funds.
No idea how the CMA views these things. But I doubt it has a neat division like as above!
I am sure you are right about the lack of division, who knows?
The primary care statement does not make sense.
− Monitoring is by TSH levels measured from blood tests taken prior to the morning medication.
− The aim of the treatment is to maintain TSH of 0.4-2.5mU/L with theT3 and T4 in the normal range.
If they are monitoring it by TSH levels, how can they tell if the T3 and T4 are normal? The GP will follow the statement by testing only TSH levels because that is what they have been told to do. There is no mention of how the patient feels...
Funny how most of the time they insist that taking morning medication makes no difference to tests? They got that right this time. Yet, they plough on assuming the person takes it in the morning.
The only 'explanation' I can come up with (aside frank ignorance) is the assumption if TSH is OK, then so too will be T3 and T4. Which demonstrates frank ignorance.
And even if GP requests T4 and T3, they will be refused.
Big pharma took advantage of a ludicrous system, but that's what business does.
The morons who make these deals that they can't extracate themselves from should be fined for what they did to us! Sack the lot of them and bring in professional buyers who know how to make a deal and how to write a contract!
Thanks for the update Helvella
Judy Copage's first article is here:
Big pharma, the NHS, thyroid disease and me
A personal account tells the story of a battle with the NHS to get treatment for thyroid disease
byJudy Copage
Give more funding for thyroid research and patients after price hike It is about time that Big Pharma put their profits into the NHS - not cause the withdrawal our life-saving hormonesDr Pete Taylor’s Fund Thyroid Research Petition 📣🔔🔊💬Detection of enterovirus in the thyroid tissue of patients with graves' diseaseBilly Kenber has signed. Have you?
