Two instances of high drug prices are denying thousands of NHS patients the care they need. This is despite the power of the NHS in negotiations and indirect pricing controls, which for many years have kept drug prices in the UK low in comparison to the USA and other markets.


The Guardian has reported on the frustrated moves by the NHS to make the cystic fibrosis drug, Orkambi available to patients.


As the negotiations between the manufacturer Vertex and the Department for Health have reached a stalemate, parents of children who will benefit from the drug are planning on forming a buyers’ club to obtain a generic version from Argentina.


Vertex, the manufacturers of Orkambi, has priced the drug in the UK at £104,000 per patient per year. An identical version known as Lucaftor can be bought in Argentina for £20,000 per patient per year. The patent does not apply in Argentina, but the NHS can not obtain this product itself due to patent protection in the UK.


Orkambi was licensed for sale in the UK four years ago, but the National Institute for Clinical Excellence (NICE) refused to okay the product’s use at such a high price in the light of the data available at the time.


There are 10,400 patients with cystic fibrosis in the UK, 40% of whom could benefit from Orkambi


In the summer of 2018, Vertex rejected an NHS offer of £500m over five years and potentially £1bn over 10 years for access to Orkambi and other cystic fibrosis drugs in the pipeline. A more recent offer has been made by NHS England, according to a report in The Guardian, but the situation has not been resolved.


Rationing care


In another example the high cost of a drug used to treat hypothyroidism has led local NHS planners (CCGs) to restrict its prescribing. Patients are now paying out of pocket for the drug and travelling to other markets where it is much cheaper.


Reports in the Daily Mail highlight the difference in price of the drug – liothyronine,  which can cost £204 for a 28 day supply in the UK compared to just £1 for the same amount in Greece.


As a generic drug, liothyronine was not subject to the same tight price controls in the UK as branded drugs. And as it was the only product of its type on the market for many years, there was also no competition to bring down prices. As a result, Advanz Pharma was able to increase its price substantially without any restrictions from the Department of Health.


Over a period from 2009 to 2017, Advanz Pharma increased the price of a 28 day course from £5.15 to £258.19, up 1,605%.


As a result of the price rise, the prescribing of the drug was restricted to specialists and even in this situation, some patients were unable to get it on prescription due to restrictions.


In 2017, the Competition and Markets Authority (CMA) began to investigate the price hikes. Advanz Pharma maintains that it has not infringed competition law and all price increases were legal and approved by the Department of Health and Social Care over a period of ten years. However, in November 2017 the CMA issued a press release headlined “The CMA has provisionally found that Concordia [now Advanz Pharma] abused its dominant position to overcharge the NHS by millions for an essential thyroid drug”  The investigation by the CMA continues with no final decision as yet. 


Unfortunately for patients, according to the Daily Mail article, the drug continues to cost more than is acceptable to the NHS and therefore the restrictions on prescribing remain in place in many areas of the country.


Advanz Pharma has informed us that the drug is now available at under £100 for a 28 day supply, much lower than the NHS Drug Tariff price reported by the Department of Health. Furthermore, the entry of two competing products in August 2017 has brought the price down and now Advanz Pharma supplies around 25% of the NHS’s liothyronine.  In addition, the company has noted that its product is sold only in the UK and the company has made a significant investment to keep the medicine available for patients in the UK.


Dear Reader,

If you like our content please support our campaigning journalism to protect health care for all. 

Our goal is to inform people, hold our politicians to account and help to build change through evidence based ideas.

Everyone should have access to comprehensive healthcare, but our NHS needs support. You can help us to continue to counter bad policy, battle neglect of the NHS and correct dangerous mis-infomation.

Supporters of the NHS are crucial in sustaining our health service and with your help we will be able to engage more people in securing its future.

Please donate to help support our campaigning NHS research and  journalism.                              

Comments are closed.