Epanutin Scandal Picked up by The Daily Telegraph – Now MPs Need to Know

I am delighted to say that my previous post concerning the scandalous increase in the price of Epanutin, an important epilepsy drug, has been picked up by the mainstream media and was reported in The Daily Telegraph today. The increased exposure that the story will now receive is greatly welcome, as it is vital that the pharmaceutical industry realise that when they try to manipulate the price of important medical treatments in this way it will not go unnoticed. What we now need is for MPs to become aware of this misuse of a monopoly position, in order to try to put real pressure on the companies involved.

I have written a draft letter below which I will be sending to my MP, and to Jeremy Hunt, and it would be fantastic if as many people as possible could join me and do the same. Please do copy and paste the letter below if it is helpful.

Stephen Adams, the medical correspondent at The Daily Telegraph discovered some interesting facts during his investigation. The first is the full cost to the NHS of the price increase – a cool £44m each year, or, to put that figure into perspective, enough to employ 1800 extra nurses. The second is the exact nature of the loophole Flynn Pharma have used to be able to get away with it, which relates to changing the drug from a branded formulation to generic.

The price of branded medications such as Epanutin is negotiated between industry and the Department of Health, which means the industry cannot unilaterally determine the price. For generics the market is supposed to keep prices low through competition, so prices are not negotiated. The problem with the market in health care, however, is that is not like other markets, and it sometimes throws up odd quirks where market dynamics cannot work – this is one such case. The fact is that there is no generic market for phenytoin. This is partly because currently there is only one manufacturer – Pfizer, who are now selling their drug to Flynn Pharma – meaning there are no competitors out there. However, even if a new company started manufacture straight away, we would not be able to switch any of our patients to the new brand, because the British National Formulary advises us to prescribe by brand only. We would be able to start new patients on the alternative brand, but this is an old drug and not that many new patients are started on it – it would be impossible for an alternative provider to develop a worthwhile market share.

If, like me, you feel that we should not stand by and watch this improper use of vital NHS resources, please consider using the letter below to send to your MP. And if you do decide to write, it would be great to hear about it in the comments below – and to let us all know of any reply you get too! Thank you for your support.

Dear

At this time when the NHS is trying to make significant efficiency savings, I am writing concerning an abuse of monopoly position by the manufacturer and distributer of a vital epilepsy drug, which is set to cost the NHS an extra £44m per year – the equivalent of employing 1800 extra nurses.

The drug is Epanutin (phenytoin) which helps to prevent epileptic seizures, and the scandal was reported in The Daily Telegraph on 13th October 2012 (http://www.telegraph.co.uk/health/healthnews/9604683/Pharma-firm-hikes-cost-of-epilepsy-drug-24-times.html). On 24th September this year all GPs received a letter  from a company called Flynn Pharma (http://www.mhra.gov.uk/home/groups/comms-ic/documents/websiteresources/con185674.pdf) detailing their acquisition of the marketing rights for Epanutin. The drug was still to be made by Pfizer, in the same factory and in exactly the same way, but would be packaged and distributed by Flynn Pharma under a new brand ‘Phenytoin Sodium Flynn Hard Capsules’. The letter neglected to advise GPs that the cost of 28 tablets was set to rise from 66p to over £15 – nearly a 24-fold increase.

Flynn Pharma have been able to impose this phenomenal price rise by relaunching the product as a generic medication. The cost of generic medications is not regulated, as the market is supposed to keep prices down through competition. The problem with Epanutin is that there is no generic market, due to the unique situation with epilepsy drugs.

There are two reasons for the lack of market forces for epilepsy medication, and phenytoin in particular. The first is that quite simply there is only one manufacturer of phenytoin capsules in the UK – Pfizer, which means that GPs have no alternative generic product available. However, even if a new company were to start manufacturing an alternative, or supplies could be obtained from abroad, GPs not be able to switch any of their patients to the new brand, because the British National Formulary advises them to prescribe by brand only. This is because even a minor change to the prescription for phenytoin could cause changes in blood levels of the drug, with catastrophic consequences – a seizure is not only hazardous for the patient, but a single seizure would cause an epilepsy sufferer to lose their driving licence for a year.

Flynn Pharma are therefore calling their product generic in order to vastly inflate the price, when in fact such a concept does not exist for this medication. In fact they must recognise this, as they actually direct GPs in their letter to prescribe their own brand.

I am sure you are as concerned about the proper use of NHS resources as I am, and would be grateful if you would consider raising this issue in parliament, in order to try to obtain a review of this situation with the Department of Health. This is important not only for the current situation, but also to prevent the pharmaceutical industry from exploiting this loophole with other epilepsy drugs in the future.

Thank you for considering this matter.

Yours sincerely,

25 thoughts on “Epanutin Scandal Picked up by The Daily Telegraph – Now MPs Need to Know

  1. Thanks for this, Martin. i will definitely be writing to my MP (Crispin Blunt) and I’ll also be adding a request that a guarantee be given to existing Epanutin users (like me) that the drug will remain available to us. I’ve been taking it for 31 years. Fifteen or so years ago my GP tried to take me off it but within hours of the transfer process being completed and me being on the new drug alone I had two seizures. So I went straight back on to the Epanutin and have stayed with it ever since. I do not want to face the likelihood of seizures again…

    Many thanks for bringing this to people’s attention.

    tom

    Like

    1. Thanks for your comment, Tom. It’s really helpful to hear from someone who really knows about this medication. We do sometimes ask people to change their pills on cost grounds, but there is a big difference between trying a different brand of cholesterol tablet, and messing about with epilepsy treatment. Thanks for your support.

      Like

  2. I have been taking Epanutin since June 1978. In those days there was no PIL and I had no instruction regarding it’s use so attempted to stop a couple of times before, in about 1980, as a result of my commute to London becoming v. unpleasant which determined me to get a driving licence. I have taken Epanutin exactly as prescribed ever since then. I got my driving licence, bought a car and drove 20,000 miles back and forth on the M4 every year until I retired, which was a good deal better than the rotten train service. I moved to Emsworth a couple of years ago. I dont smoke, have been TT since 1983 and have had very little trouble until recently when the 100mg capsules of which I took 3 were presented in a different packaging labelled Epanutin but with a Malta licence. I started taking these and had a very bad fit shortly afterwards. Thank God I was at home and not driving my car. I woke up in hospital covered in drips and wires. If the ambulance hadnt been called I think I would have died. I am within a couple of months of my 70th birthday and cant put up with much of that sort of thing any more. I assume that it was the variation in brand which triggered my attack, but my main concern is that there will be other people in my situation who might not be so lucky, they could be driving around and have a horrible accident. I have returned my licence to the DVLA.
    There is no point in writing to my MP who is, like so many of them, a Right Honourable twerp. Would appreciate any advice you care to give
    regards JW

    Like

    1. Thanks for your comments Jeremy, which are very helpful.

      The first thing to say is that, while people on epanutin are a very important voice in this issue, there is no reason to be concerned about your own treatmment. Only the packaging has changed so the new capsules will really be identical to the old. The main issue for epilepsy sufferers is the unnecessary anxiety that will result from seeing your medication in a different packet.

      If your own MP is not much use you might want to consider writing to Jeremy Hunt, or to one of the members of the Health Select Committee. You can find the members of the committee here: http://en.wikipedia.org/wiki/Health_Select_Committee

      Best wishes,

      MArtin

      Like

      1. I had a seizure in February this year, this after over 4 yrs free of seizures, my very first one being in Jan 2009. Soon after entering Ninewells (Dundee), the Senior Neurologist told my wife that the Phenytoin she had brought in to the hospital had caused the seizures & from then on it was to be Flynn Pharma& no other on the repeat prescription.
        I suspect that at some stage, my GP had switched brands to cut cost (following the huge increase when Flynn Pharma took over the marketing & distribution. I live in Pitlochry & my local MSP is John Swinney (number 3 in the government). I saw him at one of his constituency surgeries. He was excellent & passed all details on to the Scottish Health Secretary. My personal Health records have now been called in by a helpful civil servant responsible for medication. I eagerly await her conclusions. My last seizure was in late April & I am now feeling so much better (but angry). Best wishes Barry Gratton

        Like

  3. “…there is no reason to be concerned about your own treatment”

    Martin – Is that definitely the case? What if the outcry against their pricing strategy were to result in Flynn pulling the drug?

    Like

  4. Good question – not something I had thought of, and I can see it would be a reason to worry. It is true that there is no reason to be concerned at the moment.

    I think it is extremely unlikely that they would pull the drug. Mostly this is for comercial reasons – I think they could drop the price considerably and still make a handsome profit. I beleive there are also safeguards against drug companies simply stopping medications that are as essential as this.

    Like

  5. I have taken Epanutin for well over a decade. I was most concerned today to find out only at the pharmacy that the usual Epanutin had been replaced by a so called “generic brand”. With all of the potential inherent problems associated with change in this medication*, I was very concerned and the pharmacist could offer little explanation. Only after some research have I found that the manufacturing process is apparently being conducted by the same factory. There should be a duty of care on the supplier to explain all of this via the GP and pharmacist. I have received absolutely no communication over this matter from my GP. The pharmacist (Boots) had a copy of a letter from the manufacturer which I requested a copy of, but was informed that I could not have a copy as this was the pharmacist’s only copy. The way this has been implemented without any consultation with me an end user is a disgrace.

    *http://www.epilepsysociety.org.uk/AboutEpilepsy/Treatment/Epilepsymedicationnews/main_content/Lettertoyourhealthcareprofessional.pdf

    Regards,

    Richard.

    Like

  6. Unbelievably little about this anywhere in the media. Newsnight talking about a massive breastfeeding campaign hoping to save £40million through hours and hours of midwives, nursery nurses and GPs’ time. Exactly the same amount leaking from the NHS every year in excess cost for the same product because Pfizer utterly failing to act fairly, and facilitating a dirty deal within the ever more squalid world of Pharmaceutical Commerce.

    Like

  7. I have been taking Epanutin for over 30 years now and although the drug has some nasty side effects especially taking it long term it is the only drug that has had any effect on my Intractable epilepsy. There has been two times that my Neurologist has tried to remove/change this medication but each time it has led to me being hospitalised and nearly causing my death. Therefore I understand the consequences of removing or even altering the drug slightly.
    Note: My pharmacist (from Boots), seems to think that eventually, the name on the capsule will disappear or change, so what else will change, for instance the different suppliers or sources to the manufacturer? I am greatly concerned about the fact that due to the increase in price it may become harder to obtain in its present form. I am frightened that the drug company itself is being allowed by the Government to make the product a less viable option on financial grounds. I am also worried that Epanutin supply has become monopolised by Flynn due to no alternative supplier being available in equal competition and also it could be withdrawn or altered at any time due to financial viability.
    A reply to the draft letter has been sent to Margaret Becket MP who has written back telling me that she will draw the concerns to the Secretary of State for Health.

    Like

    1. Thanks for your comments, Ian, and for writing to Margaret Beckett – great to hear she will be taking some action. I am yet to hear back from the letters I sent!

      I can understand your anxiety about the drug one day being withdrawn. I think there would be a real hue and cry if a company ever made an epilepsy drug unavailable, which will hopefully be enough that it will never happen – but it is hard to have that uncertainty hanging over you.

      Like

  8. I have been on Pfizer epanutin 100 mg capsules since 1982 having been taken off them & going into status epilepsy on . The seizures then got worse and uncontrolled. I was put back onto the epanutin but the damage was already done alms I am not as controlled as I was. I have stuck to Pfizer epanutin from the early 1980s up until last week when I received my prescription and noticed the Flynn Pharma label. I have had no warning from the pharmacy or my GP about the change and I like most epileptics have severe consequences of not receiving the same brand medication. Panic set in which makes seizureze worse when I contacted the pharmacy I was told Pfizer do not make epanutin any more and they would contact my GP to switch me to a different brand. This would have great effect on me. After searching the Internet I found out for myself that Pfizer are still making the epanutin but it is being labelled and distributed by Flynn Pharma so I feel much better. Although I am worried my g p may want to change it due to the extortionate price. I find that disgusting that the drug company can make a profit out of the NHS at a time like this.

    Like

    1. Thanks for sharing your story, Dawn. When drug companies make these decsions they are quite blind to the fact that they are affecting real people with real lives. I don’t think your GP will ever change your brand, but if they do suggest a change on cost grounds I would (politely, of course!) just say that you don’t want to change. for most drugs I think it is reasonable that we sometimes ask people to try a change in order to save the NHS money, but not with epilepsy.

      Like

  9. I’ve only just become aware of all this. Touching wood, I’m not immediately affected as my epilepsy has been controlled since 1989.

    Yesterday, my pharmacy advised me that it’s unable to provide me with the Epanutin prescribed in early November!! [To protect the guilty I won’t name the (Godalming) pharmacists, even though they claim to have phoned the supplier “every day” since 10th November, and only yesterday discovered that Epanutin was “no longer available”. But perhaps someone needs a Wellington up the backside].

    The background is that between 1974 and (about) five years ago I was prescribed and duly took Phenytoin. Then, I was switched to the same dose, but of Epanutin. I queried why, and was advised it was exactly the same drug, but that Epanutin was markedly less expensive. (I checked, and found the BNF confirmed this — indeed, while I can no longer find the relevant edition of the BNF, my recollection is that the “generic” phenytoin was something like 20 times more expensive than Epanutin. This astonished me).

    I’m in the fortunate position of having a spare month of Epanutin medication available, but this situation is crazy.

    Like

    1. Thanks for your comments, Nicholas. It is always good to be reminded behind every prescription is a real person with their own story, and that the changes drug companies make have effects far beyond their knowledge.

      If ever there is a supply problem with the new Flynn-pharma version then please do let me know.

      Martin

      Like

  10. Went to a large high street chemist earlier this month & they were unable to supply the full prescription. So i left with the one item in full & a note for the remainder. Upon going back to collect the outstanding amount I was told that they were refusing to honor the note on the grounds of cost the to themselves. Epanutin being to dear. Having read the piece above & other material available I’m now wondering who is correct, pricing wise. Everything seems to pint to the opposite of what the chemists have said.
    I’ve been on epanutin since the first Wednesday in March 1977 up until now. The chemist changed that, the first time in the years I’ve been taking it that someone other than a doctor has changed the medication for me. To the extent that they got a second prescription on my behalf, for them to fill. I’m now low on epanutin, less than a weeks supply & hesitant to use what has been supplied. I’ve had problems with “generic medication” in the past where it has put me into the A&E & as much as I appreciate the work they do there, I have no desire to go back if I’m able to avoid doing so. Pfizer have said that there is still a supply of epanutin available, whilst Flynn have said that they have sole control of who gets what.

    Sean Loftus

    Below sent to the chemist’s involved
    Why should the cost to yourselves as a company dictate the medication that I am allowed to take/have to take?
    I ask because having gone to one of your stores with, what for me is a routine prescription, one of many such prescriptions taken to many chemists over the last 35 years, for the the same item(in the case of one of the two items on the prescription). The other has changed over the years.
    Now I have a chemist changing the medication, prescribed by various doctors & specialists over the years.
    I have part of the prescription, having queried before handing the prescription over that both items could be obtained together. Assured that they could indeed be got, but upon collecting informed that you had insuffiecient of one to complete the prescription & that they would have to be ordered. Its happenned in the past, so nothing new there. What is new is that the prescription cannot be filled because of the cost of the items, to yourselves. You do not want to provide what is prescribed by a doctor & are seeking to change the medication. This is a first for me.
    I cannot return what I have already been given, as I have left the store with them. You cannot return the prescription to me as one of the items is as prescribed & has been given in full. The result is that the normal method for changing this medication has been changed, by yourselves. Previous changes have been made over a period of time, with proper assesments being carried out. Simple things such as regular blood tests to check the levels. Now ruled out due to cost. Forget the person, money comes first.
    I would love to be able to go to my doctor & say that no further prescriptions are required, but that will never happen. I was born with epilepsy, brought up with it, lived with it & as far as I’m concerned I’ll die with it. Its not going to disappear in other words.
    The condition prevents simple things such as pain killers, cold remidies & certain local anestheics being taken/given. For me at least.
    A simple question often asked to get an idea of the level of pain is using the scale of 1 – 10. 10 being the worst pain you could think of. I’ve put that in simpler terms with 10 being the point at which a person will black out due to the pain. On that scale, I can give a clear 9 – 9.5. This when I broke an ankle & was unable to take anything to ease the pain, either during the re-setting or afterwards. This because of the simple fact that the anti epileptic medication comes first, anything that will interfere with that will not be used.

    You can follow response to this by putting classic33 & should cost determine the treatment given for a condtion into google.
    Private information supplied to allow the points raised to be answered & should not be used for any other purpose or placed on any data base.

    Like

  11. I have been taking epanutin since 1987.

    I wrote to my MP along the lines of your suggested letter.

    Within a week he had received a response from the Parliamentary Under Secretary of State at the Department of Health. He did not appear concerned about the matter and actually said that whilst the company was a member of the “Pharmaceutical Price Regulation Scheme” this product is not covered in the scheme’s provisions.

    He went on to say the the Department’s principal concerns has to be to ensure continuity of supply to those patients who are currently being treated with phenytoin.

    Like

  12. I had a similar reply from the DH –

    I have written twice to Jeremy Hunt with no reply but to be fair he did pass the letters onto the Department of Health. They did send me a reasonable reply to the effect that the cost of this prescription was far from settled. Meanwhile hard luck if you cannot get them.

    I have taken these since 1974 and my GP is not happy about prescribing them because of the cost.
    I found my local branch of Boots would not supply the Flynn brand against the prescription that my GP gave me with Pfizer on. I have had a permanent struggle
    with the change of name. Now that the prescription has been updated on the computer to Flynn I am getting left over’s of Epanutin from various chemists still made by Goedecke, Germany supplied by Parke Davis with a Pfizer label over that. They must be old as the use by date is January 2014.

    I think that I was taking the Flynn capsules as far back as May when the packaging changed to a square box.

    I am a very busy lady working for a Bank and in my spare time I am Chairman of two local clubs. I also go sailing, drive a car, run my home, garden etc.

    Holiday Insurance is a nightmare and so very unfair. I rarely have a holiday because I am not prepared to answer such awful questions by people who do not know what they are talking about.

    I just wish that I could get settled with Flynn, all these oddments that have now suddenly appeared leave me with a lack of confidence.

    ROSIE

    Like

  13. I have been on Epanutin for over 30years. I thankfully am receiving my Epauntin(Phenytoin as it is now called) from Boots and up to now have no problem. I can not see how they can possibly stop giving out this medication to people with Epilepsy as it could cause a fatal situation. Since September 2012 when it changed, I have had other health problems i.e. pain in feet, legs and muscle twitching at night and am wondering if the contents of these new capsules have changed in any way, as if the company can push price up, maybe they have changed the capsule giving them even more profits. I am due for a scan on my back to see what is happening, but I keep wondering about my medication and if it has changed in anyway.

    Like

  14. what about phenytoin’s side effects ???? (1)Bone Malformation,(2)Abnormal / Rapid Growth – i.e. Height + Weight,(3)Other Malformalities i.e. Dentures,(4)Skin – Problems (which resemble Acne vulgaris) but do Not always improve with Ultra-violet light-treatment – which accelerates the rate / number of seizures.

    Like

    1. I leave in Mauritius a small island in the Indian Ocean.I have been on epanutin for more than 25 years…some years back I noticed the drug price was one third less when it was imported from pakistan but high price when imported from Europe…How can drug companies play with life of people.. .disgusting . Its high time for a frontal group be formed around the world to put pressure on these dishonest activities..

      Like

  15. I recently collected my prescription for epinutin which I have been successfully taking for 41 years. Within 2-3 days of taking them I could tell that they were not working as before. light headednes and some jerks. I talked to my chemist who thought that the distributer, B and S Healthcare had produced or imported a dud batch. I am having further tests but I am fairly certain that the drugs are to blame. I have spoken to Pfizer, BansS asking for further information. Anyone else with this problem?

    Like

  16. I work for a pharmaceutical wholesaler, and we supply Pfizer’s European Epanutin into the UK markets.

    The issue in the uk markets is that Flynn Pharma will not sell the UK version to companies like mine, but allow supply to go through one wholesaler, keeping the price high and controls on supply. This is why companies like mine buy PI (parallel imports) from Europe which is still manufactured by Pfizer just not boxed with Flynn Pharma lettering on there, and save Dispensing doctors and pharmacist at least half the price of the Flynn product.

    To give people peace of mine, Flynn will not likely remove this product from the UK market as it makes them too much money. The only thing that will help bring down the price from Flynn is more confidence in the PI product which in function for and fit is identical to Flynn

    The whole thing about Pfizer letting Flynn Pharma market this product in the UK reeks of something untoward.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s