Norfolk campaign group celebrate victory as blacklisted drug reinstated
- Credit: Copyright: Archant 2020
A campaign group is celebrating a ‘trailblazing’ step to officially reinstate a blacklisted drug to improve the lives of thyroid patients in Norfolk and Waveney.
Tracey Buckenham and Tara Riddle, of Thyroid Support Group Norfolk, have spent three years fighting for the drug liothyronine, also known as T3, to be reinstated after it was withdrawn by clinical commissioning groups in 2016.
Patients with under-active thyroid are instead prescribed levothyroxine, also known as T4, to reduce their symptoms - but it doesn’t work for everyone.
In 2016, when the drug was “blacklisted” in what has been criticised as a “cost saving exercise”, patients resorted to ordering the medication from abroad as the drug became harder to get on the NHS.
More: Norfolk campaigners help take ‘life-changing’ medication campaign to governmentThere are around 50,000 patients in the region that require medication for thyroid deficiency, which can leave people suffering from tiredness, weight gain and feeling depressed.
Following the news T3 has been officially reinstated in Norfolk and Waveney, Norwich born Mrs Buckenham said it will make a difference to so many people’s lives.
Mrs Buckenham, 56, and director of Sportquest Holidays, said: “I’ve gone from staying at home and not being able to face things to taking people on fly fishing holidays where you have to carry everything. It’s physically exhausting and I wouldn’t be able to do it without T3.
“We have been tenacious and persistent. We had to be. When we sat down with the CCG we were expecting it to be a difficult conversation, but it wasn’t, we seemed to be on the same page. If we can be a trailblazer for the rest of the country, its going to be a fantastic result.”
More: Women turn to suppliers in Thailand and Germany for medication not available on the NHSIt has taken three years to reach this point, with the group lobbying MPs and working with Healthwatch Norfolk and other UK thyroid patient groups to improve access to the drug.
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In 2018, they met Lord Hunt at the House of Lords, and wrote a dossier, featuring hundreds of patients experiences, to explain the harm to patients when T3 is refused or removed, leading to discussions with NHS England.
Later publications by NHS England’s ROMC and NICE saw the group meet with the now Norfolk and Waveney Clinical Commissioning Group (NWCCG) about reinstating the drug.
Mrs Buckenham said: “It was really the last ditch attempt. We wouldn’t get this conversation going again until something else was published.”
Mrs Riddle, from Wymondham, added: “It’s been an arduous rollercoaster of a journey, one which at times we never thought we’d see the end of.”
More: ‘I’m playing snakes and ladders with my life’ - Woman may be forced to buy medication not available on NHS abroadThe campaigners agreed that patients should be first treated by T4 but be able to access T3 if their symptoms do not improve.
Mrs Riddle said: “They have had no choice. The frustrating thing was not the fact there was one drug, there was always two but this one was so much more expensive.”
But it is not the end for the 125-strong group they said, with focus turning to the expense of liothryonine, which has been under investigation by the Competitive and Markets Authority surrounding price increases.
A spokesman for the CCG said: “The CCG recognises that a small number of these patients are unable to obtain the full intended benefit from Levothyroxine, the medication usually prescribed to treat this condition. This small group of patients can now be referred to a hospital specialist who can initiate prescribing Liothyronine if they consider it is clinically necessary.
“This can be continued by their GP if the trial shows significant benefit. However, routine use of this drug is currently not recommended by NICE. These recommendations have been communicated to local GPs and hospital trusts and there is a clear pathway in place for this small number of patients.”