Brainwave, My brother, and a Conflict of Interest.

There was an article yesterday in the ‘Irish Times’ entitled ‘Epilepsy Group Warns On New Drugs‘ which at first glance is very troubling for Epilepsy sufferers. That may well be the case, but a little research portrays another story; the ‘conflict of interest’ within the medical profession and an Epilepsy support group. Incidentally, Epilepsy drugs come with similar warnings to SSRIs: behavioural changes, depression, suicide ideation, aggression and birth defects.

My brother who died 2 years ago in an accidental death, age 43, had Epilepsy. He would have done anything to stop the seizures and tried every pill available, even a brain operation. At one stage he was on 4 different Epilepsy drugs and a Parkinsons drug. He didn’t have Parkinsons but this was used to counteract the adverse-effects of the Epilepsy drugs. Never once in his 43 years did the seizures stop; so the only gain was made by the Pharmaceutical industry and my brother had to live with Epileptic seizures, plus the side effects of the medication.

I wrote to the Irish Times yesterday in reply to the article below. My reply (and my point) is underneath:

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Irish Times Article

RONAN McGREEVY  November 27, 2012

A failure to exclude epilepsy patients from new legislation designed to bring down the cost of drugs in Ireland could put lives at risk, it has been claimed.

Brainwave – the Irish Epilepsy Association urged 40 Oireachtas members at a briefing in Leinster House last week to exclude epilepsy from the Health (Pricing Supply of Medical Goods Bill) 2012 which is due to be enacted before the end of the year.

The Bill allows for the substitution of patent drugs with their generic equivalent as part of efforts to bring down the State’s €1.8 billion drugs bill. Brainwave has said substituting patent drugs for generic drugs could have “catastrophic consequences” for many of the 37,000 people in Ireland who have epilepsy.

Consultant neurologist Prof Norman Delanty said the active ingredients in generic drugs were the same as in the patent drugs but the way they were absorbed in the body could differ.

“If you look at a tablet on the counter top, the other substances such as binders and other agents which expands the volume of the tablet, there are things that make it taste better, there are things that put the colour on it. The way the tablet is manufactured can cause variability in how a drug is absorbed through the small intestine.

“If you are on a drug for high pressure or high cholesterol you can work around those adjustments. If you have epilepsy you can have a seizure and that it is a disaster,” he said.

“That for individual patients can cause breakthrough seizure and a seizure can be catastrophic for an individual on a number of levels including danger in terms of injury, prolonged seizures, risk of death and loss of driving privileges.”

He said the differences in prices between generic and patent drugs for epilepsy patients was small and it was a false economy because the State would lose out with more hospitalisations.

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My point and my letter to the Irish Times Editor

27/11/2012

A chara,

I have concerns about an article in this week’s Times entitled ‘Epilepsy group warns on new drugs’. The article states that Brainwave (the Irish Epilepsy Association) urged members of the Oireachtas to exclude Epilepsy from the Health (Pricing and Supply of Medical Goods) Bill 2012. The proposed Bill would allow for the substitution of a cheaper, generic equivalent of medication, including Epilepsy drugs. The article further states that Brainwave has said substituting patent drugs for generic drugs could result in ‘catastrophic consequences’. Consultant neurologist Prof Norman Delanty agreed and said this could possibly result in  injury, prolonged seizures, risk of death and loss of driving privileges. Could there possibly be another agenda for such scaremongering?

First of all, Brainwave’s website is supported by an unrestricted educational grant from UCB; a pharmaceutical company which produce epilepsy medication.

Secondly, among Prof Delanty’s listed ‘conflicts of interests’ are, among others, the following: “He is or has been a member of UCB Pharma Advisory Board (UK), has received speaker’s honoraria from UCB and has received unrestricted educational and research grant support from UCB.”

Surely this changes things and puts a different prospective on the scaremongering tactics coming from Brainwave and Prof Delanty? The ‘conflict of interest’ here is staggering.

Is mise,

Leonie Fennell,

Co. Wicklow

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Prof Delanty Conflict of Interests, P. 246 http://neurores.wdfiles.com/local–files/56-myoclonic-seizures-and-infantile-spasms/Shahwan_PME.pdf


3 thoughts on “Brainwave, My brother, and a Conflict of Interest.

  1. Dear Leonie

    I have read you letter with great interest. I have had Primary Generalized Epilepsy (PGE) since I was 7 years of age in 1980. I have been a patient of Prof. Norman Delanty with 10 years. In that time, and even through the recession I have always received the best care available from the resources available. I have made sure that I am given the best treatment even though it feels like I am fighting against the HSE and their totally messed up system.

    I am sorry to hear about your brother Leonie. I want to live. I have lost my job, my property, my driving privileges currently and Leonie at different stages I have also lost my mind all due to epilepsy and the side effects of medication. My epilepsy has cost the state a huge amount of money due to frequent visits to A&E and add on illnesses that I have to frequent other specialists for. I know most of the ambulance peoples names at this stage! I too have have had a type of epilepsy surgery, the Vagus Nerve Stimulator (VNS). None of which proved to be effective as my epilepsy is severe. I am now on a last resort drug and I am hoping for the best. I will probably never be able to work again, but I will be alive.

    Leonie, being an inpatient in Beaumont now is very different to being an inpatient there 10 years ago. This is purely to do with cut backs from lack of funding. If you saw how Prof. Delanty and all the neurological team rushed around to do the very best given what limited resources they have, you would, I presume have a similar outlook to mine. They are pushed way beyond the limit, and therefore it is not possible for them to do their job as they would like to or need to all the time.

    What you state as “scaremongering tactics” I see as Prof. Delanty driving the truth home about epilepsy and how generic drugs will affect the lives of people with epilepsy in a very negative way, such as death. That’s the cold hard truth of it. Who cares if Prof. Delanty is/was a member of UCB. Would it not be a lot worse if Brainwave (Epilepsy Ireland) had zero funding? Would it not be a lot worse if Prof. Delanty got zero grants?

    Epilepsy patients need medication. Brand name medication, from a Pharma company. So, as far as I’m concerned, I think it is great if Prof. Delanty is a member of UCB. Who cares where the grants are coming from, once they are coming! With these grants, a lot more people including myself are able to live. You talk about a different perspective. My perspective will always be the same regarding Dr. Delanty and the neurological staff. He doesn’t have to raise awareness. He could simply do his job with the limited resources he has and then go home. But he does raise awareness, all the time.

    At times like this, when the HSE are threatening to change from brand name to generic drugs and also when there are four beds empty in Beaumont in the Epilepsy Monitoring Unit, a stunning unit that is not functional because of the HSE, Prof. Delanty cant sugar coat the matter. Epilepsy patients wont just get a little sicker,they are at very real risk of dying if not given the proper care. That’s not scaremongering, it is fact. I should know, I am one of those patients.

    I was lucky enough to get into the old two bed unit in Beaumont one January. Whilst there, a girl phoned in and asked the nurse, “Hi, do you think there is any chance of me getting in this year?” Not this week or this month, but this year she was asking at the time. I had to wait well over a year to be called. Now, there will be an even longer wait seeing as the units, both in Beaumont and Cork University Hospital aren’t even open and the lists will be a lot longer.

    Leonie, by all means you are entitled to your opinion and as your brother had severe epilepsy you will be, I presume well aware of the need for brand name medication. But to state that Prof. Delanty is using “scaremongering tactics” and stating there is a “conflict of interest” is both manipulative and insulting to his patients also. It is in fact in my opinion scaremongering, but done by you whether intentional or not. I, for one would not be alive now if it were not for this mans expertise and dedication and the staff at Beaumonts help.

    I will have always have great respect for everything Prof. Delanty does and will always appreciate the lengths he goes to in order to insure people do stay alive, by whatever means possible. I only wish I could help more and give something back and I only wish the HSE would grow up and realize not all illnesses or disorders are the same with regards to funding. Epilepsy is a disorder that needs the proper resources in order to help the person with epilepsy to stay alive. That is fact. Prof. Delanty realizes this, I realize this as do thousands of other people, especially those with severe epilepsy like mine. To read your letter Leonie is to me, is what is staggering.

    Slán

    Martina Tangney

    Cork

    Like

    1. Among the drugs Rebecca Riley was prescribed was Depakote (an anti seizure drug); she did not have epilepsy. She was four when she died. Here’s the late John Mc Carty speaking of Rebecca and the problem of conflicts of interests within the medical profession. http://gaia-health.com/gaia-blog/2012-08-18/how-do-these-people-sleep-she-was-4-and-shes-dead-by-psychiatry/

      I’m sorry that you have epilepsy and sorry that you think I’m scaremongering. That was not my intention but alas, I can’t please everyone. I’m glad that your experience in Beaumont with Prof. Delanty was positive but it hasn’t changed my opinion. It is still my opinion that professors, doctors, key opinion leaders and patient advocate groups who lecture on ‘illnesses’ and then take honoraria from drug companies who manufacture pills for the same illness, cannot be objective.

      You asked “Who cares where the grants are coming from, once they are coming!” Actually, I care! My family have all collected money for the Irish Epilepsy Association, some still do. I for one wouldn’t have bothered if I knew that they accepted funds from UCB or any other pharmaceutical company. Depression websites like Lundbeck’s ‘lean on me’ site do it all the time; I have to say I was shocked that Brainwave did it too. It is a huge conflict of interest and I have had plenty of experience of that. People are dying because of it and I will keep writing about this because it is very, very important to me. You are entitled to your opinion, as I am; we shall agree to disagree on this one.

      I’m not sure, apart from your allegiance to Prof Delanty, how you took offence at anything I said. I did not write that blog because I wanted to scaremonger, I wrote it because I care.

      Leonie

      Like

      1. Dear Leonie

        thanks for your reply. I have no doubt you care as do I. Depakote is approved by the FDA for use in mental illness. You stated, “It is still my opinion that professors, doctors, key opinion leaders and patient advocate groups who lecture on ‘illnesses’ and then take honoraria from drug companies who manufacture pills for the same illness, cannot be objective.” Leonie, i would be dead now if they didn’t. Its not like they are putting it into their back pocket. They are using it as funding for illnesses and disorders. If they didn’t the whole neurological ward and not just the monitoring units would be shut down.

        You also stated,”It is a huge conflict of interest and I have had plenty of experience of that. People are dying because of it and I will keep writing about this because it is very, very important to me.” . Leonie, I and a lot of other people are alive because of it.

        If the Pharma companies are funding Brainwave and if Prof. Delanty is getting funding from them, then good. I would rather see that then have Brainwave closed down and Prof. Delanty and his team out of work or move abroad as the neurology dept was closed down, which would in turn greatly affect people with neurological disorders.

        I took no offense to what you said Leonie but it is insulting to state that what Prof. Delanty or any other medical professional is stating is scaremongering. Because what they are stating is what is happening to me and thousands others with such neurological conditions. That’s a fact that is being stated.

        So in effect if my type of epilepsy and what is happening to me and thousands others scares you, then there’s nothing I can do about that. Its a fact that Prof Delanty and also other neurologists have stated. If people, such as yourself don’t want to hear it and wish to see it as scaremongering there’s nothing I can do. My allegiance is to myself. My respect is for also for those like Prof. Delanty because of what he does. I am here today to type this because of him and his team. Like you said, you cant please everyone. So yes we will have to agree to disagree.

        Martina

        Like

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