Women turn to suppliers in Thailand and Germany for medication not available on the NHS
- Credit: Copyright: Archant 2017
More women have come forward to describe the risky ways they are having to obtain medication not available on the NHS for thyroid issues.
Susanna Spencer, from Norwich, and Rachel Waddison, from Hunstanton, are both part of Thyroid Support Group Norfolk - a group fighting for better access to the drug liothyronine, or T3.
The group says harm has been caused by patients not being prescribed T3, against official guidelines and along with the British Thyroid Association and other groups they presented a dossier of evidence to the Department of Health and Social Care last year.
MORE: Norfolk campaigners help take 'life-changing' medication campaign to governmentMost people with an under-active thyroid take a daily dose of thyroxine, known as T4, to reduce their symptoms.
However it has been estimated by charity Thyroid UK that up to 15pc of those with thyroid problems did not respond to the standard treatment and instead needed or T3.
Ms Spencer, 60, said she had resorted to ordering medication from Thailand and it had become harder to get the drug on the NHS.
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She said: 'If anything, things have got worse for me because I'm not getting better and I've tried all types of stuff. I even got T3 online but now I can't get it online at all, I think you have to go to Turkey.'
MORE: 'I'm playing snakes and ladders with my life' - Woman may be forced to buy medication not available on NHS abroadThe problem comes as local decision makers, clinical commissioning groups (CCGs), across the country say guidance is that GPs should not prescribe T3 and that for the small number who do need it, it should come from specialists.
But often patients are finding hospitals are also reluctant to prescribe the drug, they believe due to its high cost.
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The price of just one tablet shot up from 16p to £9.22. A typical patient would take one or two tablets a day. In 2012, the NHS paid £8m for T3 prescriptions. By 2016, almost the same number of prescriptions cost £32m.
Mrs Waddison, 42, added: 'I had always been on T4 but I never felt very good on it. I was told there was a drug that might help me, but they (the hospital) could not prescribe it.'
MORE: Women brand withdrawal of life-altering drug a 'death sentence' and accuse health chiefs of prioritising money over patientsShe had been given a three-month trial, and before that had been accessing the drug through an online pharmacy in Germany where it cost just €30 for a six month supply.
'But with Brexit happening as well, the supplier will have more checks. I don't know what's going to happen.'
A spokesman for Norfolk and Waveney CCGs said: 'NHS England has advised that GPs should not initiate liothyronine for any new patient with hypothyroidism. We have also now received further national guidance that the small number of patients who may have a clinical need for it should receive it from specialists with the expertise to identify need, review the dose and therapeutic response to this treatment. We are currently looking at this new guidance.'
Investigation into price hike
A study published in the journal Lancet Diabetes and Endocrinology this month found the cost of T3 increased by price 60-fold.
The cost to the NHS for a 28-day course rocketed from less than £4.50 to £258.19 in 2016.
And the study showed since the price hike usage plummeted and patients in poorer areas were 50 times less likely to get it than those in more affluent parts of the country.
It found 13,000 people – most of them middle-aged women – used to get the drug but the average number of monthly prescriptions in each of the country's CCGs fell from 22 to 17 between August 2013 and July 2018.
Dr Peter Taylor, of Cardiff University, who led the study, said: 'The most substantial changes in prescribing occurred in early 2016, coincident with substantial rise in costs.'
In a letter to the journal Dr Taylor added: 'Over the period analysed, no major study or guideline has advocated a change in liothyronine prescribing. This substantial reduction in prescribing seems to have been largely driven by cost.'
He said: 'It's people from poorer parts who are getting it least,' and added they 'describe their lives as being ruined. They're not able to function properly. They're not able to go to work, they're not able to live their lives properly.'
The increase in cost of T3 is currently under investigation by the Competition and Markets Authority and there is also a parliamentary enquiry into the issue.
A spokesman for the pharmaceutical company which produces T3, Advanz Pharma formerly known as Concordia, said: ''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.'
However 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.'