ENS & ECTRIMS: the Red Queen is still alive and running, on-the-spot

This is a reposting. I have just returned from the European Neurological Society (ENS) Meeting in Prague. Nothing has changed since the last time I highlighted the issue of the Red Queen.

I still find the marketing fest at the ENS and ECTRIMS  very disturbing; the extent to which each pharma company is trying to out do each other is unbelievable. Bigger stands, more staff and an increasing number of highly competitive satellite symposia. All this comes at a time of increasing austerity with increasing numbers of MSers being unable to access DMTs; either they cannot afford the costs or they are not covered by medical insurance. I heard a sad story about an MSer living in the US who is uninsured; he managed to get Natalizumab free via a patient access scheme, but because of the costs of the monthly infusions he was unable to start the drug. I can’t tell you how upsetting I find it when I get emails from people needing treatments that they cannot afford; I remain very grateful for the NHS and for living in a country with social healthcare! 

The Red Queen Effect, is a term taken from the Red Queen’s race in Lewis Carroll’s Through the Looking-Glass. The Red Queen said, “It takes all the running you can do, to keep in the same place.” The marketing departments of Big Pharma are simply feeding the Red Queen as they try to compete with each other; in reality they are simply running on the spot with the downside of reputational damage. When MSers see the marketing extravaganza that comes with meetings such as the ENS and ECTRIMS it is no wonder they don’t respect us and doubt our intentions. This is one of the issues that feeds the social phenomenon that underpins the CCSVI conspiracy theory. If we don’t address this issue the CCSVI phenomenon will simply reoccur. 

I would like to propose that Big Pharma continues to look at its self in the mirror, rejects the Red Queen Effect and comes up with something more sustainable that will help us regain our self respect and more importantly the respect of the community that we serve. 

20 thoughts on “ENS & ECTRIMS: the Red Queen is still alive and running, on-the-spot”

  1. The real scandal is that the current drugs are so expensive, yet poor in terms of efficacy.Neuros paid by the NHS should be doing a full weeks work – that's what I do in my job. I'd introduce a scheme like the Register of Members Interests in the UK Houses of Parliament. This would provide information on all the earnings of NHS doctors. I still find it distasteful that a doctor working for the NHS can be earning extra income (I suspect substantial extra income) from advising companies, consulting fees etc etc. Surely the main work should be in the clinic treating patients – no wonder there are delays for patients. No one is going to rock the boat as everyone (company officials, shareholders, neuros, research teams), apart from MS patients, are all doing very nicely. I'm glad you see what it is Prof G. But will you bite the hand/s that feed you. Independent / unbiased research is what we need – but no one will pay for this.

  2. "Real scandal is that drugs are so expensive". I agree. This has arisen because MSers or their insurance companies have paid for them. When beta interferon was first developed it was an expensive processs to make, hence the premium price. Having seen that people will pay this, meant that companies now became interested in MS but it meant also that an new more effective drug was bound to be more expensive. The price has no bearing on cost of manufacture of research costs. As I have said before lobby your MS societies to investigate i.v. cladribine (not the oral version which worked, but was canned) it is way cheaper than beta interferon but twice as effective.Get the safety data sorted and bobs your uncle CoI. None.However, as you kill the golden goose for the immunosuppressives market, it may kill companies investing in treatments for other aspects of disease. They do this because they think they can make money.

  3. Very true. Noble thoughts.But only regulation can break the vicious circle.When the US banned Tobacco producers from advertising years back, their bottom line (i.e. profit went up) as they saved from spending on marketing, PR and advertising!They did not fear loosing any market share as no one had a competitive advantage. Ironically, they were better off.Pharma/biotec should have the same regulatory framework. This should be supplemented with regulatory R&D ratios (i.e. pushing the firms to invest more in research and less on empty talk).Think banking.Antoine

  4. Re 'Surely the main work should be in the clinic treating patients': Surely working towards better treatments is more important? It's extra income for extra work that will help many more patients.

  5. Although Prof G may want to add to this, as someone more distant from the issue. I will try and answer your comments, which are taken on board and accepted as valid and useful points. "Neuros paid by the NHS should be doing a full weeks work…that's what I do in my job". However, have you considered that Neuros may not be paid full-time by the NHS. They may be part-time with the NHS and part-time with other sources. Also is your full time a 36h/week (EU standard) or a 90h/week?. I know where Prof. G's work load is nearer."I still find it distasteful that a doctor working for the NHS can be earning extra income from advising companies" (Surely it is correct that companies pay for services rendered as you would in any walk of life…….what one does with the cash is surely more of an issue. Would you object if it was used to support independent/unbiased research? I suspect you wouldn't. However from the Research Teams perspective I can honestly say that it is not all very nice as you seem to think……it is a very tough environment, which is getting worse, especially with the turmoil in the UK academic sector with the withdrawal of huge amounts of government investment and the introduction of tutition fees. It is adapt or die. Therefore we have to be inventive about how we support our work, if we can get it from the pharmaceutical industry so be it. Who you rather spend 4 months or 3 years getting something supported.Surely the issue of private consultations is by far more relevant about how one lines one's pockets as a consultant neuro. If the system requires more transparency I am sure that Prof G would embrace this. At the moment Prof G does not do private practise, so why not ask for example Dr Tom Gihooly (www.essentialhealthclinic.com), what he does with the cash from private consultations and delivery of procedures and medicines that are not yet supported by hard data from robust independent trials. Finally, if we want to help treat people, we need more effective drugs! The most realistic way of doing this is in partnership with the pharmaceutical industry. The pipeline of drugs from the pharmaceutical Industry is drying up, but academics don't know how to make drugs.As a neuro it is not good to be seen to be in the pocket of one company, as you can be seen to be a lap dog. Therefore best to be in bed with all of them or none of them.If you are in bed with them, then your patients may have the option of getting access to that new drug (via a trial) years before it becomes available on the NHS and you are on the pulse of where new treatments are happening. Where you you rather be?

  6. Think banking….UrghThink regulation, I'm for that but how do you get and impose worldwide regulation?In the world of multi-nationals if you don't like a country's policies you move shop elsewhere. There should be a unified patent system rather than the country by country system in place now. This only serves to make money for Lawyers and increase the costs of drugs.

  7. Dr Mouse,Thanks for your response. I worked in the military and working for a defence firm at the same time was a complete no-no. Could you imagine the public outcry if the army had bought new equipment and that it transpired that I had taken consulting fees from the company while in the army? I'm pretty clear cut on these issues. If you are a doctor (any specialism) then you can decide to work for the NHS or work for a company. Having a foot in both is the worst scenario. I've never bought into Prof G's argument that it's OK to take the money from all of them as this shows there's no bias! The companies develop drugs to sell. I would prefer a public funded research facility which would break the direct link between profit (companies) and passion (doctors). Neuros who receive fees from Biogen may well recommend Tysabri for a patient. I feel uncomfortable with this scenario – it just doesn't see right. Prof G is an good egg, but the current model is not one I support.

  8. Research Active Neuros working within the NHS will invarably be involved in studies with the Pharmaceutical Industry. This invariably involves some funding somewhere, whether it is to the individual or in the UK more usually the university. Yes there are some white knights out there but not many. Furthermore if they are involved in a publically funded trial of a drug at some stage, this will involve a pharmaceutical company somewhere in the pipeline as most neuros do not make drugs, they have to get them from somewhere.You also have to look at NICE as it has been as much them you influence drug availability rather than the neuros doing the trials.I would prefer a public funded research facility…..if I were on the recieving end but this facility does not exist so we deal with the world we have as best as we can.With regard funding and recommending treatments. This is a fair point and I believe it has happened/happens, hence need for transparency and procedures to avoid the neuro bias. Informed patients help deal with this. We want the BLOG to help inform.

  9. A long thread…MouseDoc: Regulation works. Di the investment banks leave the City to Dubai?-I want max 2% of every penny big pharma receive invested in marketing and lobbying.-I want 60% of every penny invested in R&D.-I want a Ferrari.You can enforce regulation as such: (i) Variable tax rate depending on marketing expenditure (ii) not selling products locally produced by offshore firms not following the same rules (iii) public funded universities to cut ties with pharma who don't obey. Firms don't migrate from west to east if you level the playing field, they migrate if they are singled out.Antoine

  10. oh… and Gihooly is a snake-oil salesman. A disillusioned thief!You should lobby the UK's medical board to withdraw his license.Antoine

  11. Antoine. Nice post…if only I'm sure Prof G will get his tongue going but he is very busy…. and not dodging the issue. Whilst there were a lot of posts in the Summer, our students are back and G has teaching commitments, research commitments, organisational commitments in addition to the day job as an NHSer.

  12. Re: "Prof G has been very silent on this issue. Is it hitting a raw (demyelinated) nerve?"Not at all; simply too busy in my day job. Can I please refer you to a previous posting on this blog?http://multiple-sclerosis-research.blogspot.com/2011/07/average-time-line-for-ms-drug.htmlThe bottom line is that in reality it is only pharma that has the skill set and resources to develop drugs. The average cost of developing a drug is simply too high and the risks too great to be taken up by academia or the state.At the end of the day we have to be pragmatic about things; if you want new and more effective treatments for MS'ers we need to support industry. All I am asking for is that Industry becomes more socially responsible and addresses issues in relation to its tarnished reputation and our reputations as a result of collaborating with them. We need a healthy and vibrant pharmaceutical industry; our health and the health of the nation depends on it.It is also not a them and us scenario; we work together as partners. Industry needs our skills and expertise to help them design and run trials and in some cases to help them set the research agenda. For example, the Mouse Doctor and myself have been lobbying several pharma companies to develop better symptomatic treatments for MS'ers; we don't benefit personally from this activity, but we hope you will in the future.Finally, if you take a broader vision and look at other emerging health issues in relation to the neurodegenerative diseases, in particular dementia and Parkinson's disease, I have little doubt that it will be a partnership between Industry and Academia that will deliver the treatments we so desperately need. Neither party can do it on its own.

  13. Re: "Neuros paid by the NHS should be doing a full weeks work – that's what I do in my job."Yep, they do! The modern NHS job planning process takes into account what we do every 15 minutes of the day. We can only attend conferences as part of allocated study leave; it is a statutory requirement for us to do participate in CPD. Regarding myself; I am not employed by the NHS, but the University. I am paid to be a researcher; I am expected to participate in academic activities and that includes attending conferences to present our work. Please see the following post, which summarises our work that was presented at ECTRIMS: http://multiple-sclerosis-research.blogspot.com/2011/10/ectrims-2011-barts-and-london.htmlFor those of you who think attending ECTRIMS was a jolly are wrong; I worked 18 hour days and arrived back late on Saturday night exhausted and with an inbox of over 800 emails. The only time I had off in the week was on the Friday night when I joined the team for dinner and drinks.

  14. Prof G,I'd like to retract my earlier comments – I'd assumed you were employed by the NHS (a fulltime doctor). That's why I was surprised that there was so much contact with industry. As a research employed by a University, I now understand the position. Once again, apoloigies.

  15. Even though I am employed by the University I still spend 50% of my time seeing patients under the NHS and about 20% of my time teaching (undergraduates and post-graduates). I don't do any private practice.

  16. Look at the timings of the comments..there's no sleep for the wicked (Prof G), thats where the day starts.

  17. I don't think many realise is that our group really wants to cure MS for good and if that means putting ourselves out of a job, so be it!To do this we have to work with Pharma but as mentioned above they must look at themselves with regard to pricing. The current situation is unacceptable.

  18. All your achievements and working round the clock (the whole team) is beginning to make me feel inadequate! Maybe not – as a full time worker with SPMS + loads of voluntary work too I think I should give myself a bit of a break! Honestly it is great what you do, guys, and I have no doubt that you want to do the absolute best for the MS community.

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