The number of NHS prescriptions for a life-changing thyroid drug has fallen by about 40 per cent after a pharmaceutical company put the price of a tablet up from 16p to £9.22 — a rise of 5,663 per cent.
Thousands of patients have been denied liothyronine because healthcare commissioners will not pay for it.
Peter Taylor, a Cardiff University endocrinologist, called for urgent measures to tackle its cost. The research, published in The Lancet, analysed prescribing data in England over five years and found that a 40 per cent fall in doctors prescribing the drug was “largely driven by cost” as there was no new medical evidence or change in guidelines.
The research found differences in the rate of prescriptions in different areas and a link to deprivation. “It’s people from poorer parts who are getting it least,” Dr Taylor said, adding that 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 NHS has not imposed any national restrictions on prescribing the drug, which is used by about 13,000 people with an underactive thyroid who have not responded to the primary treatment, levothyroxine. However, many health commissioners have told doctors to reduce or stop prescriptions because of the cost.
Krishna Chatterjee, president of the British Thyroid Association, was concerned “individual GPs are making an independent off-the-cuff decision” to deprive patients of the drug. “One might be tempted to conclude that this hits the most deprived area hardest because they have the least resources to meet this excessive cost and are therefore rationing it most severely,” Professor Chatterjee said.
Until recently the sole UK supplier of liothyronine was Concordia International, now called Advanz Pharma. There are now two others but the price has fallen only slightly and costs the NHS £8.55 a tablet.
The Competition and Markets Authority is investigating the pricing of the drug, and last year accused Concordia of breaching competition law by charging excessive prices. However, it has not given a final ruling. The Department of Health has the power to impose lower prices for medicines if it believes taxpayers are being overcharged but has not yet used it.
The powers were granted by legislation passed last year in response to a Timesinvestigation that showed that drug companies were exploiting a loophole that enabled them to impose big increases in the price of old medicines.
Lorraine Williams, director of the Thyroid Trust, said that local clinical commissioning groups were “taking patients who are well and stable and receiving benefit from liothyronine and in some cases making them very unwell” by making them switch to cheaper drugs. She said that patients who had been taking liothyronine “had got their lives back”.
She said that some patients were buying the drug online or in Europe where it is much cheaper.
The Department for Health and NHS England declined to comment.
Advanz Pharma, said that earlier price increases were made in agreement with the Department of Health.
Jan Walker, a mother of three from Devon, says that doctors would effectively be giving her a death sentence if they stopped her prescription of 50 micrograms of liothyronine a day. Ms Walker, 57, takes it because her thyroid has stopped working.
A large increase in the price of the drug means it costs the NHS more than £600 a month, and health commissioners in Devon have set a new limit of 10 micrograms a day. But she says that this would be “nowhere near enough”.
She said that the alternative, levothyroxine, left her bedridden, struggling to breathe, depressed and “within seven months I put on about 3½ stone”. She then tried liothyronine and has been on it ever since. “My skin, my hair, everything started to improve,” she said, but then her doctor said that because of the rising cost it would have to stop. The consequences could be fatal as she cannot afford to buy it privately.
Ms Walker, a part-time artist, was first diagnosed with thyroid problems over seven years ago. This summer she was contacted by her doctor and told that new guidelines from the local Clinical Commissioning Group meant that she had to move back to T3. She described the meeting as “distressing”.
“We discussed it as a family. The family’s main concern is if we can sustain it for a while, what if we get to a month where we can’t afford to get it,” she said.
“If it’s all down to money and you’re having to source your own drugs to keep yourself alive, this is the most ridiculous situation I’ve ever been in.”