RxISK Prize: No Nos
The RxISK Prize throws up one surprise after another. I would have thought as organizations that save lives and pillars of the economy, it should be relatively easy to contact a pharmaceutical company. It isn’t.
I have lots of contacts in organizations that liaise with pharma and used to have many contacts in pharma but it’s been impossible to get a list of how to contact current CEOs or Chairs of companies either from my contacts or going through organizations like the Association of the British Pharmaceutical Industry (ABPI).
The strangest thing has been actually contacting companies themselves. They sound very defensive and are unwilling to give out names or contact details. We are No Name Organizations (No-NOs). Why? Because of the nature of our business.
For some years some companies in some cases make some of their data available. But without names. In the few cases where there is a greater amount of detail – as in antidepressant trials done in children where the material runs to several hundred pages – obviously there is never anything giving the details of any subjects involved in the trials, but more surprisingly all the names of all the investigators involved in trials and all of the clinical centers where the trials happened are scrubbed. And most surprising of all, even the names of company personnel who have written the final study report have been removed.
There may be good reasons for this but it makes companies look like they are running something very shady in a community where they fear reprisals if it came to light.
Strange.
Letter
Anyway the template letter below has gone to the Chairs and CEOs of all major companies this week – to their postal addresses. We have unbundled – as the current buzz word goes – possible elements of a response, from the courtesy of an acknowledgement to a willingness to disseminate information, advice on how to run a campaign, or donations. We will keep you posted on any boxes ticked in weeks to come.
If anyone has good contacts within pharma or anyone working in any companies is sympathetic to the enterprise and wants a version of the letter customized or any further details please make contact.
A similar letter has gone to Colleges and Associations of urology, psychiatry, and general practice in the US, UK and Canada. If anyone has contact details for organizations in New Zealand, Australia, Spain, Brazil, Germany, France or elsewhere and wants to help us with a translation, please get in touch.
There seems little point writing to regulators, or governments.
RxISK PRIZE & XXX
Dear Z
Several weeks ago RxISK launched a Prize Fund aimed at collecting $100,000 to be given to a person who can produce a cure for the Enduring Sexual Dysfunctions that can follow treatments like SSRIs, finasteride and isotretinoin.
See https://rxisk.org/launching-the-rxisk-prize/ and subsequent posts
Since RxISK was set up five years ago, we have had more reports about enduring sexual difficulties than about any other single difficulty treatment can cause and have submitted a paper on 300 cases for publication. Some of the first person accounts on our website paint a grim picture of the condition and its consequences – suicide, relationship breakdown, and job loss.
Part of the problem in finding a cure lies in the fact that even though tens of thousands are affected, few among the public or the research community are aware there is an issue.
Doctors are unaware and frequently dismiss sufferers on the basis that a drug no longer in your body cannot be causing a problem. They sometimes laugh when told about a problem that only appeared after the person stopped the drug. Some of greatest difficulties sufferers have come from the insensitive responses of doctors.
Some companies have already noted the hazard in their labels, as has DSM 5. While it is not clear that any of XX’s drugs are implicated, it would be helpful if you could draw attention more generally to the possibility that some effects can endure long after treatment has stopped, and patients should not be dismissed if they raise this possibility.
While everyone will appreciate that early on when a new problem is reported some testing of the link to treatment is needed, these problems were reported first over a decade ago and the more general possibility that problems might endure for years after a treatment stops or only appear after treatment has stopped dates back to the first reports of Tardive Dyskinesia, TD, in 1960.
Although we now know there are gradients in the propensity of drugs to cause TD, we still don’t know how TD happens or have a treatment for it. Post SSRI Sexual Dysfunction, PSSD, Post Retinoid Sexual Dysfunction, PRSD, Post Finasteride Syndrome, PFS, and related problems open new opportunities to test out how such enduring problems arise.
It is not fanciful to suggest a Nobel Prize lies in wait for the person who establishes how effects like this come about and the best evidence that a proposed mechanism is correct would be a demonstration of a reversal of PSSD or a related syndrome.
PSSD brings the prospects of doing just this tantalisingly close in that SSRIs can produce genital anesthesia within 30 minutes in pretty well everyone who takes one. Establishing just how this happens and then what happens to make it endure looks like very low hanging fruit. This makes us confident this problem can be answered if it is brought to the attention of researchers – hence the idea of a Prize.
Several clinical features suggest these states stem from channelopathies, as do some forms of epilepsy, migraine and peripheral neuropathies. Their cure could open up new avenues for drug development with obvious benefits to companies, health services and patients.
I would therefore like you to consider:
- Making doctors aware some treatment effects can endure and patients should not be dismissed for raising this but that research is being done to find remedies.
- Making researchers within XX or with whom you have links aware of the Prize and the problems it addresses.
- If every employee of XX were to donate $1 this would raise the proposed amount for the Fund.
- Drawing the Prize to the attention of donors who, given the prospects of supporting Nobel Prize winning research, might be willing to pick up the baton.
We appreciate there may be cogent reasons for not supporting this effort. Getting involved will need leadership and humanity.
Yours sincerely
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We have got to find a way to break through to people regarding the relevance of the situation with antidepressants. No one that I have asked has donated to the Prize. Meanwhile I read in this study that I (or any of the 1 in 10 people taking AD’s) have a 33% increased chance of death from any cause and a 14% chance of a cardiovascular event.
https://www.ncbi.nlm.nih.gov/m/pubmed/28903117/
I noticed this study is not being reported in any major newspaper for the public to consume.
David, it’s interesting you highlight the difficulty of finding a named person in Pharma companies to whom you can write about this very serious, life changing subject, which we feel sure is causing so many people’s suicides even though coroners seem unable to make this connexion and report these figures.
One encounters the same difficulty in finding a responsible ‘named individual’ in many large authoritative bodies, such as banks and building societies. Often the customer cannot even be allowed to telephone into their local branch and speak to a real person who knows them but gets channelled through an anonymous call centre, never speaking to the same person twice, never establishing any real contact or understanding. Letters, if you are lucky enough to receive one, are signed as ‘the Team.’ Maybe the next step is to only allow us to speak to a robot. This puts the powerful safely away in their ivory tower, devoid of responsibility for any wrong doing, as no one knows, or will ever know, who they are. And the minions beneath them scurry around in frustration, trying to get answers, like tilting at windmills.
We are publicising the ground breaking RXISK Prize initiative over on the Olly’s Friendship Foundation facebook page, and we are delighted with the possibilities that your idea opens up, for all those suffering PRSD from RoAccutane- isotretinoin use, who till now have felt a complete loss of hope, leading in some cases we are convinced, to suicides. Thank you.
Yes Yesses
Scotland is doing well; just sent a fistful of dollars, not as much as I would like, but will send some more later – I need to get going on a piece of artwork to raise some cash .. for you
The new RxISK PRIZE SITE is wonderful with heaps of information for us.
I struggled to produce my own website but did manage something and when I put a new painting in a gallery or on my amateurish site, I will make sure it says proceeds for Rxisk Prize
My caravan is studio, office, library and is like the tardis ..
http://www.artargyll.co.uk/
How the professionals do it ..
https://rxisk.org/prize/
Rxisk Prize launched on Rxisk Page
Brilliant Annie, you are so talented.
I have commissioned a piece by a young textile artist here in North Wales which I intend to put up for auction for the same purpose.
Had to be done this way as I cannot put brush to canvas to save my life. painting a wall is my limit!
It will be a while before the piece is ready as she’s busy with completing stock for craft fairs at the moment. She hope to have mine completed by Christmas.
I shall put a message here – with David’s permission – when it’s done so that anyone interested could put in a bid.
Wales had better look out with your contributions (Scotland) beginning to catch up with us!
Fabulous you have organised this, Mary, and look forward to seeing the textile design and thank you for the compliment.
Aye, we have a way to go as yet, but, well done Wales!
Even walls have their place and you might be the next Banksy .. all the best for your creative art project for Rx Prize ..
Very good pictures Annie I thought Crystal was a proper photo of a horse. Your very lucky to live in a beautiful part of the world I can see where you get your inspiration to paint from.
Down here all you mostly see is concrete buildings, roof tops and traffic. In fact the only inspiration down here is how to divert the traffic, a 15 min car journey can take you 1.5 hours at peak times.
I would love to be where you are.
Gosh, thanks, Anne-Marie, much appreciated
As soon as I set foot in Argyll after the corporate hi-life, I knew it would be a place for adventure and a place for adventure it has been.
I hope you can leave the concrete one day and give yourself a new vista
Location, location, location every time – its so important. Thanks ..
Not sure how this could be done but wouldn’t it be great if there could be a gallery section on RxISK for those of us who are painters/illustrators, or those offering artworks they’ve commissioned, to display our offerings and auction them off to fund RxISK. Well done Annie for sparking this up, with images of your beautiful environment which lift the heart.
Art is the most marvellous therapy for keeping fulfilled and happy. Even for those suffering mental unwellness, art offers a way of finding peace and satisfaction by being able to express feelings which are too difficult to put into words sometimes. Colour lifts mood, just as certain music can. There have been so many examples of this, the most famous probably being Sir Winston Churchill’s colourful paintings which helped him fight the ‘black dog’ of his manic depression. In Gloucestershire there is the ArtLift Project set up by a GP in Wootton under Edge and now spread widely across the county, and in Worcestershire the very popular Garage Art Group. I have run small groups like this for many years; I’ve found that sitting painting together and talking whilst we create, has been enormously uplifting for me and carried me through some very traumatic times in my life, and the other participants have said the same. It’s also something you can lose yourself in when alone and in moments when anxiety threatens to paralyse your mind.
Or, Heather, a profile section with Rxisk Prizers fund raising activities – naturally headed up by Katinka in her Rxisk vest running and running – very impressive ..
Making a small contribution by anyone who runs, swims, bikes, walks, yodels, sings, bakes, crafts, could be enormous fun for the person raising cash for Rxisk with very little outlay and inevitably leads to a sense of involvement and usefulness ..
I’ve always wanted a Rxisk T-shirt, or even better, a Rxisk Sweatshirt, Brrrrr, which could be worn at the fund raising
I would happily wear mine on visits to the doctor .. they all seem to comment on my appearance, the last one said my hands were very brown – oh, gosh, I said, is it terminal ..
Think of all us Rxiskers with Rxisk Prize on our fronts – it absolutely has to spread the word.
Who wouldn’t ask, what’s a Rxisk Prize?
Lets think on, now we have The Project to concentrate on and it would be lovely to hear any other ideas people have.
You always enthuse Heather, it is contagious .. thanks ..
Car stickers may be another possibility? Actually, there is a ‘sticker maker’ (sounds daft but you’ll get my meaning!) on the coast road near us – think I’ll call in next time I pass ( and he happens to be open) and make enquiries about sizes/prices etc. and whether he has an online shop.
I would wear a Rxisk t-shirt and Sweatshirt whenever I could if available.
Stitch
We have 14 Team RxISK short sleeve teeshirts and 17 tank tops. We can probably send anyone who wants a template if they want to print their own
David
Annie, excellent idea re T-shirts. Husband and I wear sweatshirts in navy or white with the ‘Olly’ Friendship Foundation pale blue logo on one side of the chest, done by an industrial embroidery company. Wherever we go, wearing these, ( and the logo is actually Olly’s signature, he always put a smiley face in the ‘O’ of Olly, ), people remark on it and ask about Olly. When we explain how he died, and the acne drug RoAccutane-isotretionin, almost EVERY single time, these people tell us of someone in their family or a friend who has had their mental life messed up by this drug, and say they’d wish they’d known before taking it. I’ve had it from head teachers in schools about their siblings, from National Trust curators, visiting vicars, mortgage advisors, bank personnel when opening accounts. I only have to walk around in that sweatshirt to flush out more desperate people.
So, a RxISK T- shirt would be fantastic. I’d suggest nice big printed letters, right across chest and back. We want to make an impact. Our ‘Olly’ one is rather too subtle for fundraising.
Do you all remember last November when we had our candle vigil and we asked the Universe for support in making a difference? We are approaching that time of year again. What amazing energy and progress we’ve all made, and look how the bandwagon is now rolling, faster and faster. This RxISK prize idea really makes me feel we are harnessing lots more activity and effective enthusiasm. Well done all involved with RXISK, let’s go faster and faster now as we gather speed.
So true Heather – I also feel that having the Prize Fund to concentrate on takes away much of the frustration previously crippling me.
Absolutely right Mary. There’s a new sense of optimism in the air, as though we all feel we might actually have the tools to change the system at last…..and the momentum is palpably gathering. It’s a very good feeling.
Alarm as Scots take record number of antidepressants
https://www.thetimes.co.uk/article/alarm-as-scots-take-record-number-of-antidepressants-69wvc80pd
A record number of antidepressants were prescribed in Scotland last year (Gurpreet Narwan writes).
Last year 877,453 patients were prescribed at least one — about 17 per cent of the population. The figure represents an increase of 3.6 per cent in a year and of 38 per cent since 2009-10.
Nearly 579,000 prescriptions were given to female patients, compared with 299,000 male patients. The council areas with the highest rates were Lanarkshire, Ayrshire and Arran, while the island health boards had the lowest level.
The Royal College of Psychiatrists said that more diagnoses of mental illness were being made in Scotland. A spokesman said: “Evidence from large scale studies continues to show that for antidepressants the benefits outweigh the risks.”
Opposition parties, however, expressed concern over the rise. Annie Wells, the Scottish Conservative mental health spokeswoman, said: “There will always be a place for antidepressants in the health system when it comes to the treatment of a range of mental health conditions. But the increase has got completely out of hand, and after ten years the SNP has to do something about this.”
Maureen Watt, the Scottish mental health secretary, insisted that GPs were assessing and treating depression appropriately, and that the government was investing in mental health services.
She said: “People with mental illness should expect the same standard of care as people with physical illness, and receive medication if they need it. We are also committed to improving alternative treatments.”
DH Media Centre @DeptHealthPress 18h18 hours ago
On #WorldMentalHealthDay the entire Cabinet was briefed by leading mental health experts: @PoppyJaman and @WesselyS #HealthOrals
What, the Pill Cabinet .. ?
Alarm .. ?
The RxISK Prize is Bang On ..