Very necessary discussion brought up in this post, and I see reason in both sides of the argument (“cold hard money” vs “justice with your own hands”), and although i advocate for more dialogue and transparency, please dont make this post personal and in advance I mean no disrespect to anybody in what I am about to write.
Research is not going forward because of low funds. People do not fund because they do not see commitment with immediate results (we only live once, and why would we keep donating after 15 years just to get our hopes “Harvarded” of “Baylored” and after all this time not even be able to claim our disease and explain this condition to others without sounding conspirationist?). I am new to the group and still to understand much of the dynamics in here, but from what i can tell up to now from both sides is that this “donate-your-change” mode has beared all its fruits.
There is reason when said that we are an obscure minority, but do we not hold the truth about our condition, despite all odds? Is this not a classic scenario where the gatekeepers of our society(pharmaceuticals, MDs, FDA, etc) have failed us, but where the truth about its potential dangers and their cure would bring joy and well-being to a fairly large group of people (considering affected and to-be-affected people amongst ADs, 5a blockers and roaccutane, and their potentially common destructive mechanism)? Where the odds are low, being right can turn into big profits (remember the Big Short?). Maybe turning this huge problem into a profiting opportunity might raise the community (and investors’) interest instead?
(One redundant P cut off: blame it on the brain fog) Side-note: FDA approved science can be achieved without all the slow motion, thorough bureaucracy implied here- just look at finasteride, vioxx, etc.
I am no expert, but it seems to me that running a business plan is much more likely to move us forward (and most likely by those more familiar with our finasteride problem in the USA. Let’s face it, that is where the money is, and that is where 9 out of 10 medical patents are). Say we constitute a company, attract cientists as well as investors selling shares of the outcomes (say intelectual property of papers, cure-drug royalties and maybe even law suits settlements from Merck and others after the withdrawal of their poison - again, I am no expert and never had a business, just food for thought) . If people can smell profit, money will surely rush in. And that applies even to scientists themselves, I do not believe one single scientific authority would not seat on the table with those cards on it, as long as they are convinced that the chances of writing their names in history outweights the risks of backlash from the establishment.
We have to use the system’s strengths and weaknesses in our benefit if we want to stand any chance of succeeding, and I believe that means a more capitalist approach. We need to sharpen ourselves if we want this to head anywhere. If there were an organization selling me both the potential cure in a well-structured plan where I can also potentially cash in, I bet anyone here we would gather that money among less than 10 members.
IMO it all boils down to raising interest in profit instead of pity for “men who cant get it up” in order to achieve results. The current model is doomed, but I trust the good hearted people in the foundation and in this group and our scent for profit, as well as everybodyelse’s (we are all for profiting for a good cause, arent we?).
Wish us all the best in this endeavour, and thanks for sharing the platform.
