Thousands of mostly female hypothyroidism sufferers have been denied a drug vital to their wellbeing (Image: Getty)
Campaigners say they cannot get lifeboosting liothyronine because many area health bodies refuse to prescribe the drug.
Hypothyroid sufferers, mostly female, are forced to endure debilitating symptoms including chronic fatigue, weight gain and depression – unless they buy their own supply from overseas.
Public health officials began to avoid giving out liothyronine after manufacturer Advanz Pharma hiked the price.
In the past decade, Advanz Pharma raised the cost of a month’s supply from £4 to £248 – a 6,000 percent increase.
The company and its financial backers were fined a total of £100million last week by fair trade watchdog the Competition and Markets Authority over the “excessive and unfair” prices.
Now The Thyroid Trust has published research claiming the drug — which patients say instantly makes them feel better — has been “unreasonably withheld” by 52 percent of the area bodies running NHS services.
Secret
Trust director Lorraine Williams has demanded action to correct the “unfair and inconsistent” policies by the Clinical Commissioning Groups (CCGs).
CCGs are groups of GPs who commission the best services for patients.
Ms Williams said that although NHS guidelines say liothyronine should be made available for hypothyroid sufferers, the CCGs have widely different policies.
She said: “It has become this secret thing that many health commissioners try to stop patients having, and many doctors are afraid to prescribe it due to the cost.”
The trust discovered only 24 of 186 CCG policies it looked at appeared to be following the recommended prescription of liothyronine in full, and only 55 acted in line with national guidance.
It found 97 were not following the national guidance.
Calling for the manufacturer’s charges to be forced down, the trust added: “It is clear to us that if the price issue were resolved the issues of CCGs withholding treatment would disappear.”
A sudden change in price made liothyronine unaffordable for many patients (Image: Getty)
‘£780 FOR A PRESCRIPTION’
Chantell Mapp-Pope, 44, is still fighting to get NHS liothyronine for her thyroid health problems.
The mother of two struggles by on a less-effective but cheaper version bought from Turkey over the web, or brought back by a holidaying friend.
When Chantell, of Essex, was diagnosed with hypothyroidism, she initially received liothyronine through the NHS and it cured her problems. But it was suddenly stopped after the price hike.
Chantell said: “You were expected to pay £780 for a prescription. I couldn’t do that every month.
“The last time I asked about the NHS version, I was refused. Now I’m just trying to be patient and hoping there will be a breakthrough.”
Securing liothyronine on the NHS can be daunting, with many patients having to lean to other sources (Image: Getty)
I battled for years to get it
Mary Saunders fought for six years before managing to secure liothyronine on the NHS.
The counsellor, 65, had to get the support of The Thyroid Trust and her local MP, Lloyd Russell-Moyle, before she could convince her health authority to give her the life-changing treatment.
She had previously used holidays in Greece to stock up from pharmacies, where it sells at a reasonable price.
Mary, of Peacehaven, East Sussex, was diagnosed with hypothyroidism 13 years ago.
She said: “We shouldn’t have to fight like this. It’s just awful. It’s bad enough being ill without all this. It’s been a long, drawn-out battle.”
Doctors are reluctant to prescribe the drug, as the price for a monthly supply has increased 6,000% (Image: Getty)
Comment – Lorraine Williams, Director at The Thyroid Trust
How many Daily Express readers out there are suffering from hypothyroidism? Thousands.
You and your loved ones may have a poor quality of life, perhaps enduring crippling fatigue, weight gain, dead-looking eyes and cognitive impairment.
Liothyronine is not the answer for everyone but for many it could well be.
They may not even know it exists as many doctors are afraid to prescribe it due to the cost.
Last week, the Competition and Markets Authority fined the companies who supply liothyronine a total of £100million.
Advanz Pharma and their financial backers were punished for raising the price from less than £5 a packet to £250.
It sent a strong signal that “the system” is prepared to intervene to protect patients’ and taxpayers’ interests. But it has taken so long. So many lives have been blighted.
Why can’t this simple issue of providing fair and equal access across the country to an old generic medicine, which costs much less across the rest of the world, be sorted out?
NHS England told The Thyroid Trust last month that a letter will go to all local health authorities to reinforce that they expect them to follow national guidance: liothyronine is to be prescribed where levothyroxine has failed.
This is long overdue and we welcome it.
Will we all benefit? I hope so.
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