Recently, without much fanfare, PropeciaHelp passed the 5,000 user mark. On this occasion, I will briefly recapitulate on the global PFS catastrophe.
It is reasonable to assume that for every 100 people affected with PFS, only 10 will ever find their way to PropeciaHelp, and of these 10 only one will sign up. This is consistent with reports elsewhere that only 1% of serious drug side effect victims sign up to dedicated internet patient forums. (If someone remembers the reference for this, let me know)
If this low number sounds crazy, just remember that more than half of the world’s population does not have internet. Older people, who are more likely to receive Proscar, are also less likely to be on the internet or know how to search for information. Finally, non-english language users, who would be the majority of PFS victims, are also highly unlikely to ever find PropeciaHelp.
A good example of this low internet forum participation rate is survivingantidepressants.org, which has only 15k members, whereas it has been estimated that more than 50% of long term antidepressant users experience debilitating, life-threatening, protracted withdrawal that takes years, and for which the internet forum is virtually the only source of information and support. There have been at least a hundred million people that have taken antidepressants long term. How many of these have tried to stop and have faced the catastrophe of psychiatric drug withdrawal? Perhaps a lot more than 1.5 million, which would be 100 times 15,000. This is evidence that 1% participation rate is in fact an upper bound estimate.
The existing PFS literature is consistent with the estimation that between 2 and 5 percent of finasteride users end up with persistent side effects, i.e. PFS. There have been perhaps 25 million finasteride users worldwide (reference?). 2% of 25m is 500,000 PFS victims. I believe this is the most conservative lower bound estimate for the number of people affected by PFS worldwide.