Hypothyroidism

Jim Shannon Excerpts

Monday 21st May 2018 Commons Chamber

[Sir Vince Cable (Twickenham) (LD)]

I am grateful to have secured this Adjournment debate on a very specific issue that was originally raised with me by my constituent Liz Barron, who felt sufficiently strongly and sufficiently affected that she brought supporters from Walsall and Northampton to my Twickenham constituency. I then discovered that the health issue that concerns her affects some 50,000, and possibly 70,000, people across the country —an average of around 100 people per parliamentary constituency.

Those people suffer from a condition called hypothyroidism—an underactive thyroid—which leads to a variety of conditions, including chronic fatigue. There is a link to cardiac symptoms and diabetes, and in some cases to mental illness. For many of these people, the condition leads to the absence of a full life, and in some cases it leads to serious disability, leaving those affected on benefits and unable to live life to the full.

Eighty-five per cent. of sufferers, at the very least, are women. Hypothyroidism is very gender-specific. Underlying the issue is a policy failure by Government. I do not mean this particular Government—this is a long-standing problem going back at least 10 years under successive Governments. The problem is a paradoxical one that is rather different from what we normally see in health debates. Typically the argument in health debates is that something should be done but there is not enough money, whereas in this particular case far too much money has been spent on over-expensive drugs, leading to a correction in the form of severe rationing, which is now causing a great deal of hardship.

[Jim Shannon (Strangford) (DUP)]

I have sought the right hon. Gentleman’s permission to intervene. Does he agree that lab tests are just one part of the diagnostic puzzle and that other steps have been taken to address the fact that between 40% and 50% of patients are either over-treated or under-treated, which massively affects their quality of life?

[Sir Vince Cable]

There is a lack of precision in this area, and there are questions both on the number of people affected and on the dosages required. I fully take the hon. Gentleman’s point.

We are predominantly dealing with the questions of cost and of physical availability, but let me develop the argument a little. It is estimated that one in 20 of the UK population have a thyroid condition of one kind or another. The figures vary considerably, and within that aggregate there are people who suffer from hyperthyroidism—an overactive thyroid—and the opposite, hypothyroidism, an underactive thyroid, and then there are people with thyroid cancer, who suffer considerably.

There is a standard treatment for hypothyroidism, and I will attempt to pronounce the drug’s name once—levothyroxine—before referring to it by its more common name of T4. The drug is broadly accepted to be fairly uncontroversial, at least in the UK. It has been seriously controversial in France, where the drug company Merck varied the composition, leading to considerable side effects. There were large-scale protests by hundreds of thousands of people in France, but there has been relatively little controversy about this particular drug in the UK.

What is controversial is where the standard T4 treatment does not work, or does not work adequately, for a fraction of hypothyroidism sufferers, estimated to be roughly 12%—the range goes from 5% to 20%. It has been established by tests over the years, and by successful treatment, that those people benefit from an additional drug, liothyronine, known as T3. We are talking about 50,000 people in this position and, as far as we can establish, only about 6,000 of them are getting the treatment they should have, which would substantially alleviate their condition.

The roots of this problem lie in the charging and costings for this drug. There is a monopoly supplier, Concordia, a company that was originally called Goldshield. The word “gold” was probably so obviously embarrassing, given the way it treated this as a goldmine, that it changed the name to Mercury Pharma, and it has subsequently been changed to Concordia. Some 10 years ago, this company originally produced a packet of these drugs for about £4.50, but the cost then increased to £258 for the same product, which is an escalation of about 6,000%. The NHS was originally spending some £600,000 a year on this drug, but I established through parliamentary questions that in the past three years it has spent successively £22 million, £33 million and £30 million. There has been an enormous increase in cost and an enormous burden to the health service as a result of the extraordinary pricing that this company has adopted. The consequence is that a large number of clinical commissioning groups have stopped supplying the drug and a large number of people no longer have access to it.

The Government, to their credit, have responded in the past year or so with two specific interventions, the first of which was referring the matter to the Competition and Markets Authority so that it could examine the abuse of pricing. The CMA has provisionally reported that the drug company has been seriously abusing the market and charging excessively. In addition, the Government have engaged in a consultation exercise on limiting the availability of the drug. There was a strong negative reaction and some 30,000 people petitioned the Government on those potential restrictions, but they have proceeded with guidance, at least in England, and the drug has been removed in many situations. The guidance is somewhat ambiguous but, in essence, it says that the drug should be made available only through secondary care—through hospitals. A user has to obtain a consultation with an endocrinologist in order to have the drug prescribed, and often this is difficult to secure. What are the consequences of that? In some 23 to 25 CCG areas in England the drug is no longer available on prescription, and 90% of CCGs have said that they wish to stop supplying it, so we have a postcode lottery.

In addition, a lot of users have realised that they can get round these restrictions by going on the internet or travelling to Europe, because in many European countries the drug is available at cost. Remarkably, the NHS is paying some £9 per tablet, whereas in Germany it is available for 25p. People who have become aware of that can order it on the internet or go to Italy, Germany or Greece, where the drug is freely available. We are dealing with a combination of a postcode lottery, some well-off people able to pay the full market cost, and others who are using the drug unsupervised through internet purchases.

I shall round off what I want to say by posing questions on a series of issues to the Minister, the first of which relates to the history. We have had 10 years of a scandal that may well have cost the taxpayer some £200 million in overcharging, so I want to ask him whether he has any plans to retrieve that money. I established through parliamentary questions that the Government have been active in the High Court in cases of this kind and have recovered money for the taxpayer in previous cases of seriously abusive charging by companies. Do the Government have any plans to do the same in this case?

Why did it never occur to anybody in the NHS over the past 10 years to bring in these drugs from overseas? They are produced in Europe at standard quality, so there is no problem. Why is that not NHS policy? Perhaps I can recall a former Member of the House who was recently remembered because of his infamous “rivers of blood” speech: Mr Enoch Powell, who was once a highly respected Secretary of State for Health. One thing that he did in his period in office was to help the NHS to overcome issues of scarcity and cost by bringing in imported drugs in situations of this kind. There is a long precedent and I cannot understand why that option was not used on this occasion.

My second concern relates to current supply. Why are the Government not using the powers recently acquired through Parliament—in the Health Service Medical Supplies (Costs) Act 2017—under which they can force companies to cut their costs? That appears not to have happened in this case, and I am intrigued to know why. Two other companies have been licensed to break the monopoly; are they now producing the drugs, and at European-level costs? Are those drugs being made available to the NHS so that the problem can be resolved?

Finally, on the availability of the drugs to patients, will the Government introduce revised guidance to help a much larger number of patients to obtain prescriptions through their GP, as they did before, rather than having to go to a hospital? It is often not possible to get a consultation and, even if there is one, a prescription is difficult to obtain. Will the Government therefore issue revised guidance to help the large number of people who currently do not have access to the drug?

I conclude by quoting Sir Anthony Toft, a former physician to Her Majesty the Queen who was for many years president of the British Thyroid Association. He summarises the case from the point of view of an experienced professional:

“Experience of managing more patients with thyroid disease than most over a period of some 40 years is being trumped by inflexible guidelines; truly a remarkable state of affairs. Others hide behind guidelines to avoid the cost of prescribing liothyronine, which in the UK is exorbitantly priced by the sole supplier…when well-travelled patients can obtain supplies for a few euros in Italy and Greece and beyond.”

He strikes me as an authoritative and reliable source of advice. I do not know whether the Minister is aware, but 25 May—at the end of this week—is World Thyroid Day. He will make a lot of people very happy if they are able to celebrate that day with an advance in Government policy.