A ban on liothryonine will be devastating – I should know
Dr Renee Hoenderkamp
Ok. So I need to get something off my chest. It’s very personal to me so I have hesitated and procrastinated before doing this, but a real issue, so here goes!
So firstly, this was me (seven years ago) without T3 on Levothyroxine:
I stopped converting T4 to T3 after six years on Levothyroxine and turned from my profile picture to this in six weeks. I won’t bore you with how I was feeling but trust me: I couldn’t function as a GP. I couldn’t make a cup of tea!
Let’s not argue over whether or not the NHS should ration services and/or medication because like it or not, we already are. There is a postcode lottery going on all over the country on the supply or not of IVF, cataract surgery, varicose vein treatment and so on.
Liothyronine (T3), which for me is life sustaining, is already being rationed with some CCGs blacklisting it. I am fortunate in that my CCG currently allows it. Many others aren’t so lucky. So let’s argue over what, not whether.
There is currently an NHS consultation looking at ‘cheap or ineffective medications and those that can be obtained over the counter’ with a view to taking drugs off the formulary for us as GPs.
So the list… it’s an odd one. There are 14 items on it. Some seem no brainers: homeopathy, gluten free food, travel vaccines, omega 3 and fish oil, rubifacients and natural remedies for example. The rest is highly controversial and involves medication not available over the counter. T3 is one of these. I am terrified.
So why is T3 on the list? COST. Nothing else. Five years ago T3 was £19 per month. Since then Concordia, until very recently the sole UK supplier, has increased the price to the NHS to £280 per month. It is freely available across Europe at £20 per month. Why are we not challenging the price hikes of these medications rather than their use? Should that not at least be a question?
NHS England’s rationale is that ‘T3 is clinically effective’ (no kidding) ‘but there are cheaper alternatives available’. So this is rationing on cost alone, despite there being thousands of patients already safely and happily established on it. I am sure this is true for some of the other medications on the list. I certainly know from my experience that Levothyroxine is not a suitable alternative for me and for many people like me, some who have Dio2 gene faults. Without it I would not be able to function in society, let alone as a GP – surely the cost of that has to be taken into consideration.
And let’s not forget that this is a disease of women who are being adversely affected and will potentially be unable to be carers, mothers and workers.
The alternative is that patients buy it from other sources and therein lies a whole heap of danger. From where? What? Will it be real? And so on. Why should patients who have relied on an NHS prescription have to turn to these unregulated sources for their medication when there is not a suitable alternative.
I am happy to ask patients to buy paracetamol… which is not even on the list.
With many CCGs already having blacklisted T3 the postcode lottery is well established. And yet the thyroid guidelines (and they are just that) are about to be re-written, which will take 18 months – a long time to be close to Myxoedema coma… and that’s where I ended up. Interestingly the British Thyroid Association have reacted vigorously to NHS England, who quoted their guidelines in the consultation document, and have said that their guidelines should not be used to support the withdrawal of T3. They accept that some patients need it.
How can we take away medication that patients rely on, need and cannot access off script?
The courts recently overturned a decision by the NHS not to prescribe an alternative to the normal cheaper medication for a child with phenylketonuria. It costs £3,000 per month. The judge said that it ‘would be inhumane’ to deprive the child of this expensive drug. I feel a legal challenge coming on…
Dr Renee Hoenderkamp is a portfolio and Media GP in London
Concordia, which markets Liothyronine in the UK, has provided the following statement to Pulse:
‘The market for generic medicines in the UK is highly competitive: prices fluctuate significantly, but overall the UK generics industry provides over £13billion of annual savings to the NHS.
‘Concordia itself offers over £100million of savings each year through its medicines. Price increases are sometimes necessary, particularly in instances such as Liothyronine where there are numerous complexities surrounding its manufacture and regulatory approval. That said, the price of Liothyronine has not increased for more than 18 months. Concordia only increased the price of 3% of its UK medicines last year, with a far greater percentage seeing price reductions. The Department of Health is notified of all Concordia’s price changes and has never raised any concerns.
‘We believe that our 5 year investment project in Liothyronine has now resolved the technical manufacturing issues and, with two other manufacturers having also invested in launching this year, we expect future prices to reduce significantly.’