A few days ago, a Facebook notification pinged on my phone. Finally, after years of legal wrangling, Advanz Pharma lost their appeal against the Competition and Markets Authority’s (CMA) ruling that imposed millions in fines for their “excessive pricing of medicines sold to the NHS”, in particular the drug Liothyronine (also referred to as T3) “an essential medicine to treat thyroid hormone deficiency”.
The Competition Appeal Tribunal (CAT) unanimously upheld the CMA’s ruling in July 2021 that Advanz benefitted from its powerful position in the market and breached competition law. From 2009 – 2017, Advanz increased Liothyronine prices by over 1000% (from £20 to £248 a pack of 28 tablets). The CMA initially imposed a fine of over £101mn which Advanz appealed. At the Tribunal, CAT upheld all CMA’s infringement findings and finalised the fine at £84.2mn. Advanz now have to pay that fine.
However welcome the outcome of this case is, the legacy of the price hikes still lingers.
A life-changing drug
Even as I inwardly celebrated, I was reminded of the thousands of hypothyroidism sufferers who are still fighting for Liothyronine to be prescribed alongside the standard treatment, Levothyroxine (T4). The price has recently come down dramatically from £248, but many Integrated Care Boards (ICBs) still refuse patients access to it, or restrict dosage and are still under the misapprehension that it is too expensive – all due to Advanz’s price hikes.
Earlier this year, my article on hypothyroidism triggered an avalanche of responses from women, sharing their stories and opinions. I can only imagine that they too feel that some kind of justice has been done. The enormous price hikes by Advanz deprived patients of a treatment that, at least in my case, has changed my life for the better.
Others reported the same dramatic return to health: one patient reported that after many tests, doctors’ visits and being refused T3, she finally found a sympathetic endocrinologist and GP.
“I pushed an endo several times and eventually she suggested to my GP that I may like a private trial of T3. My GP was lovely and gave me some on the NHS! After about four weeks, I had my life back and all my symptoms had gone.”
Sympathetic endocrinologists seem to be the key, once the patient has got past all the barriers put up by ICBs regulations:
“The endo really listened to me and has given me a trial of T3 with my T4. After two days I felt transformed. No brain fog, I can walk much faster, lost weight and my belly fat, and exercise much longer.”
Looking for other sources
The excessive pricing of T3 caused ICBs to limit prescriptions and the drug was blacklisted in my area. This has led to many women sourcing and paying for their own T3 after being refused by the NHS.
“I get my T3 from Greece thanks to a good friend who goes there every year and have been taking it since 2020 when it transformed my life.”
“I had no option but to go private. I feel so much better but sadly I have no option but to get the medication privately paying £300 a month.”
“My late sister had this problem, bought some T3 from Thailand and her condition improved. She tried to get her GP to prescribe it on the NHS but was rejected, and was left with no option – to buy it in Thailand.”
This is all very well, but it depends entirely on the size of your bank balance, depending on contacts overseas, and ordering online carries the risk of getting an inferior product. As one reader wrote:
“I am disappointed that the NHS does not cover my medication. It has now got to the point where, with the cost-of-living crisis, I cannot afford the medication and therefore will have to be left to deteriorate over time. […] I know other patients in other areas that get the medication on the NHS which seems grossly unfair and discriminative to some degree.”
Advanz is not alone
There is clearly a need to highlight the problems caused by pharmaceutical giants. Advanz is not the only large company to be investigated by the CMA and fined.
GlaxoSmithKline were fined £44.9mn for preventing competition from a generic brand of paroxetine, which threatened profits for their own branded version, Seroxat. Paroxetine is used to treat depression and anxiety disorders.
Another anti-depressant, nortriptyline, was sewn up in the UK market by King Pharmaceuticals and Auden McKenzie, “when they shared out between them the supply of nortriptyline to a large pharmaceutical wholesaler”. They also worked together to fix prices, later admitting they broke the law.
Auden MacKenzie (with Actavis UK) were also guilty of price inflation when, over a decade, they raised the price of hydrocortisone by over 10,000%. Their fines totalled £260mn.
Fludrocortisone is used to treat Addison’s Disease. Amilco and Tiofarma “agreed to stay out of the fludrocortisone market so that Aspen could maintain its position as the sole supplier in the UK”. All three companies reaped huge financial benefits from this arrangement. They were fined almost £23mn and made to pay £8mn directly to the NHS.
The need to fight
It seems that in order to avoid this corruption and resulting discrimination, and to get Liothyronine prescribed on the NHS, a battle is required. But not everyone is ready, or well-informed enough, or equipped with the resilience to fight. The first step is to be heard:
“I’ve been on a low(ish) dose of Levothyroxine (T4) for probably about 16 years. I don’t feel noticeably better. Just been told I’m anaemic too after grumbling about being tired. It feels like such a struggle to be heard.”
Being heard comes with the emotional burden of being misunderstood:
“So many symptoms are unresolved by Levothyroxine. There’s a lack of listening or empathy by doctors, refusing to refer me to an endocrinologist, and accusations of noncompliance with taking my medication, being lazy and obese.”
Battling against this resistance is hard, but it is important not to give up.
The second step is to be your own advocate, read all the medical literature you can and challenge medical policy. This is how one reader got an appointment with a specialist:
“I did my own research, read ‘The Thyroid Solution’ by Ridha Arem and visited my GP with questions. After the first question my GP realised I knew more than she did, and referred me to the consultant endocrinologist.”
All is not lost. There are many groups across the country who are campaigning for combined therapy of T4 with T3. The Thyroid Trust, Improve Thyroid Treatment, Thyroid UK, Health Unlocked, and the Devon Support Group are all excellent sources of information.
My thanks are due to the readers who supplied the information in this article.
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