• National commissioner uses clinical guidance to justify withdrawal of drug against apparent recommendations of medical association
  • Leaked email suggests NHS England intends to stop paying for drug despite consultation still being open
  • Only UK supplier of the drug currently under “pricing investigation” by the CMA

NHS England has been accused of being “totally unethical” after proposing to stop paying for a thyroid drug that is the “difference between living properly and not doing so” for patients.

In its consultation on stopping the routine prescription of some drugs, NHS England is also using clinical guidance to justify the withdrawal of the drug liothyronine against the apparent recommendation of the medical association that produced the research.

HSJ has also learned NHS patients may be putting themselves at risk by buying the drug abroad after trusts and clinical commissioning groups stopped prescribing it. The medicine is used to treat hypothyroidism.

NHS England proposed to stop the routine prescription of the drug in March, to save £39m a year. A consultation on the proposal began last month and will run until October.

The national commissioning body recommends liothyronine should not be given to new patients and CCGs should start “deprescribing” it to “all patients”. It said it should only be offered in “exceptional circumstances” by “multidisciplinary teams”.

The Competition and Markets Authority is undertaking a separate “pricing investigation” into the sole UK supplier of liothyronine, the pharmaceutical company Concordia.

HSJ has seen evidence suggesting NHS England intends to stop paying for the drug despite its consultation still officially being open.

In response to a patient’s inquiry on the issue, an NHS England employee, who did not provide their job title, said this month: “I can confirm that the decision has been taken to remove liothyronine from the CCG prescribing list and for this drug to be replaced with an alternative.”

HSJ has also learned CCGs and trusts are also telling patients they will no longer be prescribed liothyronine – well in advance of the consultation closing. They include Dudley CCG, a joint committee of Derbyshire CCGs and Brighton and Sussex University Hospitals Trust.

To justify its recommendations, NHS England’s consultation paper refers to a 2015 statement by the British Thyroid Association, which said there is “no convincing evidence to support routine use” of the medication.

However, the BTA issued guidance in December 2016, seven months before the consultation launched, to say its “position statement should in no way be used as an endorsement for discontinuing [liothyronine]”. At the time of this story’s publication, the association had not commented about NHS England’s use of its guidance.

NHS England has argued a cheaper alternative drug to liothyronine should be used, but the charity Thyroid UK said the alternative, which costs a hundred times less, does not work for all patients.

Thyroid UK president Lyn Mynott said: “The fact that [NHS England] is looking at taking patients off liothyronine who have been well on it for years is totally unethical. People are afraid they will go back to being ill again; it is the difference between working and living properly and not doing so”.

An NHS England spokeswoman denied the consultation was a foregone conclusion. She said: “Final guidance on any restrictions to the drugs under review will be informed by responses to the consultation, once they have been fully analysed and considered. CCGs are able to develop their own prescribing policies and advice for their prescribers locally.”

NHS England also said the proposed restrictions are due to the high costs of the drug because of “excessive price inflation”.

Concordia confirmed in May that it remained the subject of an ongoing CMA “pricing investigation”. The company did not disclose the focus of the investigation.

The cost of liothyronine has rocketed in the UK in recent years. In 2015, the NHS paid six times more for a similar number of liothyronine prescriptions than it did in 2010. The BTA found that the drug is sold in Germany for one tenth of the UK price.

Some doctors are concerned that patient safety is being put at risk because of the restrictions.

Professor Azeem Majid, head of primary care at Imperial College London, said he knew of patients buying the drug from abroad “unofficially”, without supervision.

Some patients have launched an campaign to stop withdrawal of the drug and a petition has received over 17,800 signatures.

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