A parliamentary petition has been launched by Dr Pete Taylor (a doctor specialising in thyroid disease) to urge the government to allocate a small percentage of the fine imposed on Advanz Pharma to thyroid research in order to try and change things for the better.
Thyroid disorders affect millions worldwide, causing a wide range of symptoms that significantly impact quality of life. These effects include fatigue, weight fluctuations, mood swings, and a variety of other health challenges.
Sadly, there are often limited treatment options and gaps in health professionals’ understanding of thyroid-related conditions. This petition therefore seeks to try and leverage some funds from Advanz Pharma’s fine to bolster thyroid research initiatives.
Advanz Pharma fined for Liothyronine price hike
Over the last decade, Liothyronine, a vital medication that countless thyroid patients rely upon to ward off debilitating symptoms, had its price hiked by an eye-watering 6,000%.
Around 10-15% of patients with hypothyroidism (an underactive thyroid) have persistent ill health despite the standard prescribed Levothyroxine treatment. However, some find their symptoms improve dramatically with Liothyronine; this medication is a lifeline for them in managing symptoms.
Advanz Pharma took advantage of limited competition in the market to significantly raise their prices, despite stable production costs. From 2009‒2017, Advanz increased the amount they charged the NHS for Liothyronine from £20 to £248 for a pack of 28 tablets. The repeated price increases led NHS spending on this vital medication to soar from £600,000 in 2006, to an enormous almost £30mn by 2016.
This made it unaffordable for the NHS and so it was sadly withdrawn from patients, causing profound distress to them, and significant frustration to the doctors tasked with their care. Liothyronine tablets were very rarely prescribed by the NHS from July 2015, causing many people who relied on the drug to face the prospect of stopping treatment, paying for the drug themselves or relying on inferior products.
In response to this injustice, in 2017, Advanz Pharma was fined £84.2mn by the Competition and Markets Authority.
Liothyronine still expensive
However, despite the reduction in prices, Liothyronine is still the more expensive option, and some patients are still being refused the treatment they need.
In November of last year, Dr Taylor was involved in research published in The Lancet which highlighted the ongoing issues with Liothyronine pricing. The study found that although prices for the medication have now fallen significantly, they remain higher than Levothyroxine and, indeed, higher than they were before the price increase occurred.
In 2022, Liothyronine prescriptions made up only 0·2% of all hypothyroid medication prescriptions, but accounted for 14% of the total hypothyroid medication costs. Lower-dose liothyronine, as recommended by the British Thyroid Association (BTA), is 240% higher than the cost of the 20 μg dose, so following their latest guidance incurs substantial additional costs. Even now, high drug prices continue to affect clinical decision making for a considerable number of patients.
Many Integrated Care Boards, who make cost-based decisions, still refuse patients access to it, or restrict dosage, and with the pricing increase the reason, it’s still blacklisted in some areas.
Medical research: the poor relation
Despite hypothyroidism being a common illness (one in 20 of us will be diagnosed with thyroid disease at some point in our lives), this area has been the poor relation in terms of medical research for far too long. When competing for research funding with other common areas such as heart disease or cancer, thyroid patients often lose out and larger trials are urgently needed. As a result of this lack of available funding and research, there have unfortunately been no new treatments in decades.
Instead of letting these vast funds simply disappear into government coffers, the petition creates an opportunity to channel a portion of the Advanz Pharma fine towards a cause that could significantly benefit the health and well-being of countless individuals.
It requests that the government should allocate around 5% of the £84mn levied from the drugs company to thyroid research. This would be an excellent way of redressing some of the very avoidable harm done to this patient group. There is a real opportunity here to turn an unfair situation into something that will ultimately benefit the lives of patients for the longer term.
It is heartening to see that the petition has already garnered support from a diverse range of stakeholders, including patients, healthcare professionals, and patient advocacy groups; there is clearly an appetite to advance treatments for this much overlooked group.
What could the future hold?
Five percent of £84mn equates to £4.2mn. With this money invested in thyroid research and development the possibilities for groundbreaking treatments and innovations are within reach, and the future for millions of patients across the UK would be brighter.
The initial government response from the petition when it recently met the threshold of 10,000 signatures was not encouraging, which is why much more progress needs to be made. With your help the petition could reach the 100,000 signatures required in order to trigger a parliamentary debate. This would create a real chance of affecting positive and exciting change.
The petition closes on 4 March, so supporters need to act fast. Please sign and share it with friends, family and colleagues. Our collective efforts could see this important issue finally get the attention it deserves and make a lasting impact on thyroid research and patient care.
