It is with great sadness & regret that I have formed this opinion, but having seen the efforts and investments made both financial and otherwise over the last two decades in attempting to lobby the FDA or Global medical equivalents in taking CFS/CFIDS/Fibro/ME serioulsy, it doesn't appear that this banging our collective heads against the wall is paying any meaningful dividends.
If anything its merely re-enforced an empirical disconnect, skepticism and clinical mistrust between those working at the coal face and living with this crippling illness, and those whose empirically dominant views define almost every level of CDC & FDA decision making.
Thus I've formed the view that lobbying the FDA and equivalent continues to get us absolutely nowhere, and for all the cost and efforts involved, maybe we should instead consider focusing our attentions on lobbying those drug companies whose profit motive's and brilliant lobbying prowess is far greater than our own, and whose products can be re-patented for a whole new condition/disorder/illness.
Its far easier for reputable (well connected and very influential) drug companies to seek approval for later stage trials of previously developed/approved drugs, not unlike Gabapentin conversion to Lyrica, and from a drug company's perspective; it would not be deemed prohibitively expensive for such open clinical trials to be initiated if it were made clear the number of patients and return on investmnet they may secure with comparitively little outlay to say a compound's creation in a lab up to FDA phase III-IV approval for market sale.
So would it be prudent of us as a community to consider a slightly less glamurous option to achieve our objectives by actively lobbying those Drug companies whose products we identify as holding value and having them push our agenda as their own as it is clearly evident they have far greater reach and infleunce with the FDA and CDC ithan we do presently. Instead of preaching to the converted and wondering why we are getting no where, maybe we take a more realistic and pragmatic appraoch to how this game is played by wagging the dog to get access to the drugs we so desperately need and the indirect funding b others who will seek to capitalise on this newly emerging clinical market.
Maybe the Gordon Gecko mantra, "Greed is Good" is a line of thought we should have to consider in an effort to achieve our very necessary objectives. Medicine is a business, no more no less and thus suspeciptible to the influence and opionions that money/lobbying can achieve. So it is in this context as horrible as it may sound, that I would be most interested to know exactly what medicienes from what drug comoanies that we seek an audience with. Then we initiate a common interest, shared lobby group who pitches to the decision makers in these companies what we want and the profit and benefits to them in fostering their organisations financial clout and interest in lobbying the FDA and CDC on their behalf and not ours.
The minute we have a number of large drug compoanies picthing collectively their diverse drug offerings to the FDA & CDC the faster this condition will be accepted by our Insurance companies, physicians and society at large. It wasn't that long ago Parkinson's and Multiple Sclerosis were considered a neurosis not so differnet to the way CFS/CFIDS/ME/FIBRO is perceived today.
I am advocating the establishmnet of a very professional CFS lobby group who in turn lobbies our targeted Drug companies whose drugs we feel hold the greatest value and wag the dog to get what we need until such time that other medical bodies follow suit and further interest from other resreachers and drug companies decide to join the party on the basis of profit alone.
From my position honesty has got us no where, and I feel that we are holding our collective breaths for a Rituxmab miracle, one I cannot envisage occuring unless we are willing to play the grubby game of Big-Pharma Politics and invest in lobbying and marketing those whose opinions and decisions at the very top will determine the future of funding and grants fro research in this fielf of medicine, one that many are afraid to be associated with such is the bad name and connotations it esposues.
I've no doubt what I am proposing is an unpopular approach, but I can't see much of an alternative at this point. Please let me know if this appraoch has been embraced and by whom, as it would appear that its only those practicioners who endeavour to treat this illness are the only one's that are our frontline bench working in combination with a commited voluntary estbalishment. In theory that is all fine and dandy, but its not how things i the real world of big busines work, especially big Pharma. If we do become a special interest group with a professional lobby group that represents our interests I suspect it may get us better results feven if it is a somehwat morally bankrupt approach to getting our needs met.
Anyway that is my 2 cents worth and I'd love to think there was a better way than what I'm advocating we consider, but having watched from a far and donated money to this and that and seen very little progress I can't help but feel its time we too played the game and behaved like any other powerful special interest group in Washington. Its not like there aren't a few million of us in desperate need of access to better and more afforafbale treatments that what is currently on offer.
Curious to know what others think about the greater CFS Global community creating a co-operative lobby council for lack of a better word, in an effort to have our voices and needs met just like any other special interest group that holds great sway over the FDA and CDC. If my views offend it is just frustration on my behalf and a genuine sense of being trapped and wondering if there may be a better way, unsavoury as it may sound?
Take care all,
Ben