NICE wound me up the wrong way today.
I received an email
mailchi.mp/f88453618e93/gil...
I read the email and wrote (and sent) as below:
Good morning Gillian Leng,
I have just received an email from you at NICE and wish to make a comment.
NICE guidance and equality - can we do more?
14 August 2020
It is a testament to the success of the NHS that it has managed to adapt and develop to make freely available a wide range of new drugs and technologies.
The achievements in making new medicines available is, undoubtedly, important.
However, there are OLD medicines which continue to be refused by most of the NHS (in all the constituent countries).
Liothyronine was first available around 1956 so is by no means a new drug. So far as I can tell, it was never patented in the UK, nor in the USA. There is nothing new which can be used in its place. Being a hormone, it is what it is. Analogues might be achieved but at present, if it is needed, there is no option.
Over the past five or more years, prescribing of Liothyronine within the UK has been severely restricted. Various bodies have changed it from something a GP could choose to prescribe to a consultant-only product. Even then, many consultants feel unable to prescribe. And even if they prescribe, continuation of that prescription by GPs has all too often been refused.
NICE has produced guidelines which seem to clamp down even further. Why, even testing Free T3 is relegated to an also-ran test which is almost never needed. Which flies in the face of a considerable body of accumulating evidence.
I am well aware that NICE is required to consider costs – cost-benefit, etc. But this Liothyronine issue, along with lack of Free T3 testing, has occurred in parallel with grotesque price inflation of Liothyronine products in the UK which are at variance with the stable pricing regimes in force in the rest of the world.
Costs need to be seen to include the costs of inadequate treatment and inadequate testing. These failures mean that all too many patients are investigated, even treated, for numerous suspected issues which are all too likely actually be due to inadequate treatment.
If the cost of Liothyronine Impacts on its appropriate use, that needs to be stated in clear language. NICE needs to advise the politicians, the NHS purchasing executives, everyone involved. You cannot consider costs and yet do nothing about them when there is extremely good evidence of disparate pricing between the UK and, for example, Germany and France.
It is the exact opposite of a testament to success.
I am afraid that claiming the glory of making “freely available a wide range of new drugs and technologies” appears disingenuous when viewed alongside the failure of NICE, and indeed, the majority of the UK medical establishment in managing thyroid disease, especially when Liothyronine might be appropriate. I do understand that there is little glory in adequate treatment of thyroid patients.
I know that the email is about equality. We need equality for thyroid issues. There is next to no understanding of race and thyroid disorder. For example, non-goitrous autoimmune hypothyroidism was once called Ord’s while the goitrous form is sometimes called Hashimoto’s. Yet there is almost no mention of the fact the some genetic groupings are more prone to one, some to the other. Doctors fail to appreciate that northern European people are more likely to have the non-goitrous Ord’s form than are others despite us being located in northern Europe. The corollary being that they will also fail to understand that the goitrous form is both more prevalent in others and can have a more significant impact on breathing and swallowing.
Yes to equality in who manages NICE. But also yes to equality across all disorders and not just those which have a new treatment or technique.
Regards
<helvella>
We shall see, eh?
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