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Post by Kathymel on Nov 25, 2013 20:41:37 GMT
I saw this posted today on facebook and I'd like to know if anyone here, particularly admin, knows anything about it. It sounds good at first glance: ADHD AllianceHowever, I'd like to know what backing this has from established ADHD organisations across Europe. I see it has been initiated and funded by a pharmaceutical company, Shire, which doesn't automatically write it off in my eyes, but does make me raise an eyebrow. At the bottom of the page in a little box it says: a European project initiated, developed and funded by the pharmaceutical company Shire with the help of the Just::Health Communications secretariat. Communications secretariat sounds good, doesn't it? Like maybe they work out of Brussels or something? Wrong. They're a marketing and media relations agency in London. Perhaps I'm just too suspicious, but as far as I'm concerned, if I haven't heard about it through the channels I trust, I'm going to be wary of their motives. Anyone?
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Post by Kathymel on Nov 25, 2013 21:06:24 GMT
Just to clarify further.
I believe the best support organisations are run by and for the people whom they support. I have some experience of organisations that are run by outside agencies and they often fail to understand the priorities of the people concerned and often have their own agenda. This may not match that of the people they are supposed to be for and can sometimes entirely negate and overwhelm campaigns run by the grass roots organisations.
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spok
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Post by spok on Nov 25, 2013 22:12:50 GMT
To be honest, I don't think I could support this considering its backed and (entirely?) funded by a Pharma company. As long as their corporate interests and ADHD'ers interests are aliened then that's all very well but what happens if at any point in the future they diverge?
Looking at the bio's of their "independent experts" it looks fairly education centric too. I'm not sure there is much of a lack of awareness of ADHD among children. It's more the inattentive presentation and Adult ADHD that's under recognised.
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Post by Kathymel on Nov 25, 2013 22:25:24 GMT
Agree on all those points, Spok.
And the professionals they have on their team don't seem to be as qualified, for the most part, as one might expect.
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Post by Kathymel on Nov 25, 2013 22:32:39 GMT
I can't imagine this has anything to do with Shire launching Elvanse this year, can it?
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Post by odat on Nov 25, 2013 23:25:22 GMT
I don't have a problem with the company, esp while the NHS is doing nothing for us but what I don't really like is how unclear they are about their objectives and plans. "The stories gathered will inform a report including recommendations identified by the Steering Committee to drive change in attitudes and policies towards ADHD across Europe. The ADHD Alliance for Change report and the total number of supporters of the pledge will then be presented to the European Parliament and may be presented to national Parliaments. " Just a little woolly!
I know we also have ADDISS in the UK. I am not familiar with their work but assuming they are good, it may be by working with ADDISS, the Alliance can help people in other countries to begin to get more support.
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Post by Deleted on Nov 25, 2013 23:53:01 GMT
I can't imagine this has anything to do with Shire launching Elvanse this year, can it? Don't think about Shire in the UK - they are HUGE in the US, Europe is still a backwater. The cynic in me thinks they want to promote ADHD in Europe (and get their portfolio licensed). On the plus side ADHD needs pushing in Europe and having a commercial sponsor isn't necessarily evil. I'd be a lot happier if they had the support of independent organisations - we have ADDISS and UKAAN as representatives of the lay community and professionals. They've not offered me any cash (for my charitable work - I don't like to talk about it ), we still have adverts here so it looks like Atticus hasn't been bought - so what are they funding?
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Post by Kathymel on Nov 26, 2013 0:10:33 GMT
I have it on good authority that they are launching in Europe and that this is to increase sales.
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Post by odat on Nov 26, 2013 0:38:34 GMT
I have it on good authority that they are launching in Europe and that this is to increase sales. Let's just hope they keep our interests at heart. There's not a huge amount of detail on the site yet = even just around the basics like what ADHD is. ETA - predictably the experts are all/most being paid by the company too
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spok
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Post by spok on Nov 26, 2013 0:39:31 GMT
Agree on all those points, Spok. And the professionals they have on their team don't seem to be as qualified, for the most part, as one might expect. Of course not!! Shire engaging in clever marketing... They would never do such a thing! I agree I'm not sure I would classify many of their independent experts group members as experts. One of them is a PHD student (although I guess you could argue she could be an expert in ADHD advocacy rather than ADHD itself)! I think I did almost fall in love reading her bio though. She has battled ADHD, she cares about ADHD, she is presumably intelligent and is really rather beautiful. Oh and she's Irish... *Swoon* I feel like there is a lack of British or Pan-European ADHD organisations that properly represent adults with ADHD. What we need is a equivalent to CHADD (although CHADD might well receive a lot of funding from Pharma so I say that tentatively). Go on their website and notice how it's not child centric (both the design and content). Compare that to any British equivalent and there is a stark difference. ADDIS has a distinctly child like website design for instance.
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Post by JJ on Nov 26, 2013 0:49:19 GMT
I'm tired and feeling really poorly, so might not put my view across v well tonight, but I feel quite strongly about this so I'm going to try to remember stuff properly. I've not looked through it all yet, but from what's been said here, I would definitely support this. A couple of months ago I finished reading 'Big Pharma' by Ben Goldacre and I highly recommend it as thoroughly enlightening and horrifically terrifying in equal measures - it's an in depth explanation of how the pharmaceutical companies work, how the regulatory and licensing bodies work (MHRA, EMA, FDA mainly) how GPs work, pharmacies, NICE et al. No surprise that the big pharmas are unscrupulous, immoral, unethical corrupt etc, much bigger surprise about the rest of them tho - the bodies set up to protect us don't at all and one of many scary up shots is they actively withhold essential and life saving / changing data from everyone (drs and researchers included)...nothing is as it seems... Even your eminent respected academic in the field, with a zillion published papers possibly didn't write or even participate in half of them but just put their name to some pharma's in-house research, to give it the air of independence and respectability it needs to get taken seriously......ooohhh, it's shocking, that's just skimming the surface....but I'm in danger of derailing here now Anyway, because of the way it all 'works', the only real way for drugs to ever get licensed and for doctors to start prescribing them is through the astronomical advertising budgets of the pharmaceutical companies (which are bigger than their r&d budgets). It's not agreeable - but it is the way it works at the moment. One of the many ways big pharma push to get their products licensed is through funding support groups for sufferers. The relationship has a symbiotic nature - the support group gets funding to support its members, raise awareness, exert pressure on the licensing bodies / decision makers etc. The pharmaceutical company gets a good bang for its bucks without having to do that much - and with the respectable cover of the group to promote their product / its need - and reach sympathetic ears that would otherwise be more cynical and dismissive. UKAAN does amazing work for adhd and is funded by pharmaceuticals. Prof Asherson's disclosure list of industry funding is long. So it's not as simple as good vs evil. Soooo, my view is, that any distaste I might have at the means, is massively outweighed by the end, which would hopefully be proper widespread understanding of adhd in adults and UK and European licensing of effective medication. I'm happy to engage in the ethics after I can easily get my meds from my GP - until then, I'll stfu
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Post by JJ on Nov 26, 2013 1:03:08 GMT
Oh, and forgot to say too, it's possibly a positive sign that this has popped up - according to the book, they pop up more just before some launch or push - completely disappear the moment they fail tho
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Post by Notaguest on Nov 26, 2013 5:34:04 GMT
i am a member here but wanted to comment not in my id. Ben's book is skewed and not all big pharma companies are like that. i have worked for a big pharma company for a long period of time. advertising does need to come into things but also there's drugs that for many reasons don't make it to market. companies still invest in this R&D and that's not something that comes to many people's consideration. as said earlier the nhs don't really support us so someone has to fund some research.
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Post by annie on Nov 26, 2013 8:55:12 GMT
Like the rest of you, most of the Steering Group are unknown to me. However Fintan O'Reagan is very well known here in the UK (he's part of the ADDISS Management Group) He along with Dr Susan Young (member of UKAAN) tabled a statement in House of Commons earlier this year. They were asking that all children who had had one exclusion from school should be screened for ADHD.
Earlier this year, Nessa Chilvers MEP launched an "Expert White Paper" on ADHD in the European Parliament - to raise awareness about the societal costs of ADHD. Dr Susan Young and Prof. Nutt were involved in producing this White Paper BUT it was funded by SHIRE. We think ADHD is poorly recognised here in the UK, but in many parts of Europe, it's not recognised at all. I suppose what I'm saying is, many supportive professionals struggle to get funding to raise awareness of ADHD and Pharma Co are often the only source of funding. Pharma's involvement is not a black and white issue.
Personally, I'd be happy to join this Alliance but everyone must make up their own mind. Thanks for providing the link - interesting to see what's going on behind the scene.
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Post by Kathymel on Nov 26, 2013 9:31:46 GMT
Thanks, Annie. I agree pharma involvement in funding is a necessary evil, after all, they're the only ones with money.
My main issue is with their aims. It's unlikely that they will have the same priorities as the people who have ADHD and I'd want to know exactly what I was condoning.
My background is in Deaf issues. I'd say at least 95% of the companies and organisations that claim to represent Deaf people are hearing-led, have their own agenda and completely overlook, ignore and bury the Deaf community's wishes. They completely fail to represent them. I know we have completely different issues and a communications barrier is not one of them, but organisations with the wrong core aims can be very subtle at taking over and perverting the public perception.
The lack of availability of alternatives to meds is down to pharma companies not wanting people to find alternatives and not funding that research. If it was up to the people concerned, CBT courses would be offered alongside.
The bottom line is that none of the ADHD-led organisations have the funding to throw this kind of money at a campaign.
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Post by JJ on Nov 26, 2013 9:54:12 GMT
i am a member here but wanted to comment not in my id. Ben's book is skewed and not all big pharma companies are like that. i have worked for a big pharma company for a long period of time. advertising does need to come into things but also there's drugs that for many reasons don't make it to market. companies still invest in this R&D and that's not something that comes to many people's consideration. as said earlier the nhs don't really support us so someone has to fund some research. Just read this and had to comment, just to make sure I gave the full impression in my post that I wanted to give. I'm not against big pharma as a mass - I don't think they're any different from any other big companies and I think all big companies and organisations are unscrupulous, immoral etc - not every individual in them, but, as an entity, with money and power etc as up for grabs, it's inevitable. I do think the regulatory bodies should be more above that kind of stuff, but they're not. Ben Goldacre's book criticises the system as much, if not more than pharmaceuticals - it's perversely organised so as to actively encourage bad practice and disincentivise good (the system being the NHS, the government, the regulatory bodies, funding arrangements, support for research, education etc) and the organisations that should be putting good practice into place, aren't. And you're right, money's still spent on r&d for drugs that don't make it to market. I looked it up last night, on average, the advertising budget is twice that of r&d. No profit-making company is going to have that skewed spending distribution without a system that makes it necessary. And, because of the way it all works, it's most definitely pharmaceuticals (ie the work of private, profit-making companies) who are responsible for drugs that have made a massive positive impact on us all. And it's a shame that someone who works for them has to hesitate about revealing their connection - because we need people working for them and we need these companies. Anyway, just to clarify, I'm not of the mind that all pharmas are baddies and it's black and white. They are baddies, working in a bad system, regulated by baddies and the hegemony is enforced by baddies ....but now I'm digressing into a Marxist argument about the bourgeoisie and the proletariat.....
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Post by Kathymel on Nov 26, 2013 10:18:20 GMT
....but now I'm digressing into a Marxist argument about the bourgeoisie and the proletariat..... Happy to follow you into that territory. Without wanting to divert this thread too much, the only thing I would say here is that the pharma companies have some considerable control of the government and, by extension, the NHS. They pour so much money into party funding and have so many politicians in their pockets, they can virtually write the laws that govern them. Same with any large corporate body, of course.
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Post by JJ not signed in on Nov 26, 2013 10:31:21 GMT
Oh, absolutely - which is why the bodies we pay for out of our taxes, commissioned by the people we democratically elected to represent us and our best interests, don't do the job they mislead us into thinking they do.... Shall we start our own country? The People's Republic of ADHD
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Post by Kathymel on Nov 26, 2013 10:40:53 GMT
Wouldn't that be fab. A small island with just enough people to create a viable community. Self-sufficient, but with one valuable excess commodity which would enable us to pay for the meds. Before Fukushima, I would have said somewhere in the Pacific, but I like my fish too much to want to go there, now.
And now we have gone completely off the tracks of the thread ...
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Post by Deleted on Nov 26, 2013 11:08:34 GMT
Sort of alluded to the latter part of this thread in my clumsy post here. The trouble is, what do we do re Big Pharma and the vested corporate interests across the globe? There seems to be a political and financial feeding frenzy against the most disadvantaged in society, whilst the few scoop the spoils. But is a revolution going to be any better? I suspect not as a potentially bloody path from competing cabals to structured society will only lead to the same thing in the end as the "incorruptible" become the new corrupted. And talking of nuclear energy: are we reliable and responsible custodians of such immense and damaging power? Again I'm not convinced! As you may have gathered, I'm not that hopeful for the our particular species. It might be that the planet cleanses itself pretty soon the way it's going However, thank goodness there will be some AD(H)Ders to think out of the box when the need arises....if the NTs don't go gunning for us first. But we'll outwit 'em
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Post by Deleted on Nov 26, 2013 14:47:34 GMT
Just some Friedrich Nietzsche to add to the above:
"Whoever fights monsters should see to it that in the process he does not become a monster. And if you gaze long enough into an abyss, the abyss will gaze back into you"
"Insanity in individuals is something rare - but in groups, parties, nations and epochs, it is the rule"
"The individual has always had to struggle to keep from being overwhelmed by the tribe. If you try it, you will be lonely often, and sometimes frightened. But no price is too high to pay for the privilege of owning yourself"
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Post by Stillnotaguest on Nov 26, 2013 17:54:15 GMT
....but now I'm digressing into a Marxist argument about the bourgeoisie and the proletariat..... Happy to follow you into that territory. Without wanting to divert this thread too much, the only thing I would say here is that the pharma companies have some considerable control of the government and, by extension, the NHS. They pour so much money into party funding and have so many politicians in their pockets, they can virtually write the laws that govern them. Same with any large corporate body, of course. -- thank you for your further response jj. i can only spk abt the company i work for mel. all companies lobby gov to some degree either directly or through their own governing bodies. for us there are more and more controls, policies, regulations that makes anything like you allege for us very untrue. have a read of the bribery act that details about inducement to prescribe for a start. if a company did something illegal that lead to a market gain or massive sales, the media would be over it before the end of the day. i wrote this anon as i didn't want to get into this discussion. i lost to myself but i wont be replying again. ive enjoyed reading people's responses though including the ones i disagreed wth
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Post by Deleted on Nov 26, 2013 18:17:06 GMT
I can't imagine this has anything to do with Shire launching Elvanse this year, can it? Don't think about Shire in the UK - they are HUGE in the US, Europe is still a backwater. The cynic in me thinks they want to promote ADHD in Europe (and get their portfolio licensed). On the plus side ADHD needs pushing in Europe and having a commercial sponsor isn't necessarily evil. I'd be a lot happier if they had the support of independent organisations - we have ADDISS and UKAAN as representatives of the lay community and professionals.
They've not offered me any cash (for my charitable work - I don't like to talk about it ), we still have adverts here so it looks like Atticus hasn't been bought - so what are they funding?A bit narcissistic quoting myself There's a serious point in there. If they threw some cash at our voluntary/charitable sector it'd be slightly easier to stomach. I'd be happy to fill my tank with their cash - it might help some needy soul who's out there struggling on their own and since I can't influence prescribing it's be 100% philanthropic - the same applies to this site, ADDISS etc. UKAAN would be a different kettle of fish - they seem to be bound up representing the medical end (why?) and there's an obvious conflict of interest for anyone with a pad. I've eaten pharma food, had their pens etc - it was on the basis that I could be attributed as a medical professional and therefore part of their PR budget. It's business, plain and simple. Could they fund ADHD charity and make a return on it? This site, ADDISS, myself are all advocates for the ADHD community and have some influence on the public, MPs etc which, in turn, influences funding and treatment. Indirectly they would benefit in the long term. I think they're missing a trick - the Alliance is patently lobbying. Funding the grassroots looks a lot more neutral and we're insidious. Just a thought...as is a nice new Merc
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Post by Deleted on Nov 26, 2013 19:37:11 GMT
If they contacted me, I'd sign up without a second thought
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Post by Kathymel on Nov 26, 2013 19:38:52 GMT
If they contacted me, I'd sign up without a second thought Click on the link I put in the first post. You can add your support from there.
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Post by JJ on Nov 27, 2013 5:42:20 GMT
But is a revolution going to be any better? I suspect not as a potentially bloody path from competing cabals to structured society will only lead to the same thing in the end as the "incorruptible" become the new corrupted. He he . When I suggested our People's Republic of ADHD to Kathymel, Animal Farm flicked across my mind and I briefly considered if we'd become Napolean and Squealer Possibly inevitable....... Planetdave's sold his soul to the devil already and he's not even got the merc
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Post by Deleted on Nov 27, 2013 10:00:49 GMT
But is a revolution going to be any better? I suspect not as a potentially bloody path from competing cabals to structured society will only lead to the same thing in the end as the "incorruptible" become the new corrupted. He he . When I suggested our People's Republic of ADHD to Kathymel, Animal Farm flicked across my mind and I briefly considered if we'd become Napolean and Squealer Possibly inevitable....... Planetdave's sold his soul to the devil already and he's not even got the merc Not meant as a swipe at anyone here, just life generally, but overall I'd say "probably inevitable". I reckon advanced aliens did once land to take a sniff, but quickly decided that we're not up to much as a species and left us to fester in our own Orwellian pigswill in a sort of benign "The Day the Earth Stood Still" stylee.
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