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.
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
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.