Thousands of women are missing out on a vital thyroid drug after 60-fold rise in price by makers using loophole to charge NHS £7million a month
* By ‘debranding’ liothyronine its makers exploited a loophole to inflate the price
* It increased from about £4.50 to £258 in 2016 and its use has fallen accordingly
* The price increase by Advanz Pharma is being investigated by the Competition and Markets Authority and is the subject of a parliamentary enquiry
By RACHEL ELLIS FOR THE DAILY MAIL
PUBLISHED: 23:57, 18 December 2018 | UPDATED: 00:00, 19 December 2018
Thousands of women are missing out on a vital thyroid drug because health boards have stopped prescribing it following a 60-fold increase in price, according to researchers.
The NHS cost of a 28-day course of liothyronine – used to treat an underactive thyroid or hypothyroidism – rocketed from less than £4.50 to £258.19 in 2016, after its maker used a loophole to inflate the price.
By ‘debranding’ the drug in 2007, the manufacturer was able to avoid NHS rules which stop companies increasing the price of medicines.
A study, published today in the journal Lancet Diabetes and Endocrinology, shows that since the price hike, use of the drug has fallen significantly, with patients in the poorest areas now almost 50 times less likely to get it than those in more affluent parts of the country.
The study analysed the number and cost of liothyronine prescriptions between August 2013 and July 2018 using data from NHS England. Roughly 13,000 people – most of them middle-aged women – used to get the drug, but researchers found the average number of monthly prescriptions in each of the 195 clinical commissioning groups fell from 22 to 17 over this period.
Study leader Dr Peter Taylor, of Cardiff University, said: ‘The most substantial changes in prescribing occurred in early 2016, coincident with substantial rise in costs.’
The study found that the total monthly cost of liothyronine prescriptions in August 2013 was £758,975, but this increased almost ten times to £7,018,679 by 2018 despite the decline in use.
‘Over the period analysed, no major study or guideline has advocated a change in liothyronine prescribing,’ wrote Dr Taylor in a letter to the journal. ‘This substantial reduction in prescribing seems to have been largely driven by cost.’
Lorraine Williams, director of The Thyroid Trust, said: ‘The fact that people in poorer areas are least likely to get the treatment is disgraceful. There should be equality in the NHS.’
Around 3 per cent of the population suffer from an underactive thyroid, which can cause depression, tiredness and weight gain. Women over 40 are at greatest risk.
The most common drug for the condition is levothyroxine. However, symptoms persist for around 10 per cent of people on this drug. For these patients, taking liothyronine may help.
The huge increase in the NHS cost of liothyronine, made by Advanz Pharma formerly known as Concordia, is being investigated by the Competition and Markets Authority. There is also a parliamentary enquiry into the issue.
A spokesman for the CMA said: ‘We currently allege that Concordia abused its dominant position to overcharge the NHS by millions for this essential thyroid drug. We are currently deciding whether the law has in fact been broken.’
A spokesman for Advanz Pharma said the company ‘invests significant amounts’ in older medicines.
He added: ‘The Department of Health has the power to intervene and set the price of any unbranded generic medicine where it feels the NHS is not getting value for money. In the case of our liothyronine, this power has never been exercised.’
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Very interesting that the Department of Health could have acted to do something about it. Clearly not important enough to bother - after all it’s just a load of fat lazy moaners who are bleating isn’t it? And those with money - well they’re okay as they can buy their way back to health. Thank you Jeremy Hunt, thank you Matt Hancock, the nation’s health is safe with you. B*****ds.
I wrote to my MP in 2013 to flag up the start of the price hike. My letter was passed on to Earl Howe in the House of Lords. He replied to me that transport costs and difficulties with manufacturing were the reasons for the increase. Did he seriously believe that?
You are right and last year I discovered a website showing MPs who had what I would call a conflict of interest with shares in pharmaceutical companies. Guess who is on the list, along with many more? I sent this to my own MP, asking for comments. Have I ever heard a word? No. It is only this conversation that has reminded me. We all lead busy lives and they rely on that for inconsequential people like us to be ignored.
Does anyone know where this notion comes from: "The most common drug for the condition is levothyroxine. However, symptoms persist for around 10 per cent of people on this drug. For these patients, taking liothyronine may help."
I keep hearing that - the 10% - but does it have basis? Out of my unscientific sampling of thyroid patients I've come across IRL, I think that figure is low.
And probably a far higher percentage, like 50-60% if you include the, "just about managing" on Levothyroxine population
The reduction in medication for type 2 diabetes, antidepressants, blood pressure meds, pain management of fibromyalgia, UTI antibiotics, etc etc would all fall impressively too
And probably 100% would do better on it than Levothyroxine but how will we ever know if there is no freedom of choice or even any treatment options over which to exercise freedom of choice?
Many researchers have found that many do better on a T4/T3 combination than on T4 alone. Others, I'm one, cannot recover on levo alone or even with a T4/T3 combination. So it should be a personal choice for the patient and they should be allowed a trial rather than be prescribed or not according to TSH result.
They haven't stated that liothyronine was withdrawn by Endocrinologists and GPs as that must have been the directive to them - all based on the cost and leaving thousands high and dry and desperate. Having to try to source T3 online and some even being asked to pay by the suppliers at a higher cost: not knowing whether the link was authentic or not and the aggravation and stress caused by the stringent prescribing - ignoring patients altogether. Is it any wonder we have lost faith in the medical profession - especially those who are supposed to be the 'knowledgeable ones' when there are quite a number of members on this forum who would put the medical profession to shame and members have a chance of recovery through their advice but not if they are prevented from sourcing whatever thyroid hormone suits them.
I hope that Dr Skinner's staff are at a stage where they can publish all of the Research Dr S and staff undertook whilst dealing with those who could travel to his surgeries, Birmingham/Scotland.
Many of us have read statements by those who are supposed to be 'sympathetic and caring' and found an arrogance and a distinct 'I know better than you' type of diagnosis. They are also incapable of acknowledging the many symptoms that can develop but are willing to prescribe anti-d's, pain-relief, propropanol, or any other prescription for a 'symptom', rather than ensuring that the patients' TSH, T4, T3, Free T4,Free T3 are 'optimum - with regard to TSH optimum - it is not somewhere in the rangebut 1 or lower. The frees towards the top of the range.
Also take into account that in order to get NDT (natural dessicated thyroid hormones) withdrawn the Associiation made a statement which is untrue, certainly for a replacement hormone successfully used since 1893 so members have had to source their own in order to recover their health.
There needs to be a huge overhaul of the Endocrinology with input from the patients who've undergone a HUGE learning experience in order to recover their health. Those of us fortunate to have consulted with humane doctors who did all in their power to assist the person, yet who imay be humiliated by being forced to appear before the GMC for daring to do as he had done since first becoming a doctor - to heal and return the person to good health. Most professionals are scared to follow their instinct in case they lose their livelihood as a few have done before them.
Commonsense isn't a subject you pass a test for: it is inherent in the person's character to understand, listen to patient, and heal.
I think you are right about the % being low. That percentage probably refers to the number of enlightened doctors who prescribed it - they seem much more of a rarity than patients who are crying out for the option of T3.
Why do all newspaper articles list the effects of hypothyroidism as weight gain, depression and tirednes? If only! What about the fact that the thyroid controls all bodily functions? Every single cell is affected. Why is it always simplified so that we appear to be a bunch of neurotic, overweight, sleepy women? Could Thyroid UK please redress this next time such a feeble article appears in a newspaper, or even worse a magazine for doctors.
All the words are rubbish. Recently I had a mini argument with a doctor who wanted to use the word 'tired' for my fatigue. I wanted to use the word 'weak', as in muscle weakness, but he wasn't having it.
I kept asking him whether by tired he meant 'sleepy', or did he actually mean 'weak'.
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At least its a foot in the door that means they're not arguing we don't exist at all.
T3 Scandal - Watchdog Revealed Drug Firm overcharged NHS by 6,000% rise for T3 - Guardian Article
Response from my MP regarding prescribing of Liothyronine.
Ill-informed Telegraph Article on NHS funding of T3 Liothyronine (link below): Can we/ Thyroid UK officially complain? It’s shockingly poor!
