Grass roots email and phone campaign?

[inthewest]

This is going to sound REALLY presumptuous, since so many people here have so much more knowledge about this (I’ve tried NO treatments except 1/2 a cialis pill!), have suffered longer, and have done so much, but I have a couple of ideas, which may have been done before 100 times, but I’m surprised there isn’t much to show for it among dermatologists.

The first major course of action that the forum is all going for is of course the top-down stuff: the courtcases, the studies, etc. This is ultra-important, but also slow and uncertain. A big problem to me is that urologists and endocrinologists do not know about this AT ALL, but even bigger is that dermatologists are clueless and more people are encouraged on the drug with misleading info (I was told sides WOULD go away). Do people on this forum generally even go back to their OWN derm to tell them of persistent sides? I did, and a few others did at least, but why aren’t they hearing back? Even the chair of the ISHRS committee on propecia side effects had had hardly any contact from affected patients - he mentioned one guy with a possibly persistent case who contacted him 5 years ago…!

Is there a grass roots campaign we could organise from the forum? Can we start an organised campaign to speak to as many dermatologists as possible? We don’t need to go to the top to filter down - there are enough of us to speak to nearly every dermatologist.

There are 10,000 or so derms in the US alone, and I imagine order of 50,000 worldwide. If a hundred of us made a few reasoned, intelligent phonecalls a day - pushing past secretaries with polite insistence, or at least asking the secretary to pass things on, and also pressed for emails which we could mass-send, then we would have an effect. A few each dermatologist would have even more, if we organised what to say to them. And we could ask the dermatologists to pass this information on, as well as the doctors. A study or a broadcast will get some viewers, but actively contacting everyone will get more and is possible! We can include evidence, papers, reasoned arguments why the prevalence is far larger than the studies suggest, and links. It may not make them stop prescribing it, but those with a conscience will warn their patients properly. We could ask them to show their patients…

This would help: aad.org/find-a-derm

ESPECIALLY IMPORTANT: Everyone should go back to their own derm and tell them. The derms aren’t seeing this because it seems not enough people are going back! Mine hadn’t heard anything. I’ve spoken to about 8 dermatologists. I don’t think all these derms are scam artists.

One thing I can do myself is talk to a few senior parties in the hair loss community, and post on hair loss websites as much as possible. I have already contacted and got a rapport with a couple of people on the ISHRS committee on the propecia side effects controversy, who say they are concerned and want to talk to me again. These guys are in an organisation that prescribes this drug to tens of thousands. I have a few unfair advantages I won’t mention here that make it easier for me to have their ear, but I’m surprised so very few on this forum (any?) have. I can phone several dermatologists a day.

I plan to write up a provisional email and post it on here tomorrow - I would love suggestions from the many, many more knowledgeable people on the forum. And we can send more than one. But obviously I know that a misinformed or overly sensationalist email can do more damage than a decent one can do good.

[inthewest]

Not just dermatologists! The more urologists, psychiatrists and endocrinolgists we see and inform in a detailed email about the situation, and tell of possible treatments, what’s been tried, and how complex it is and what not to do… this will also have an effect. We must actively MAKE ‘PFS doctors’ if we can… even Dr Ohl, who is rated one of the top 1% in the country, is one of the few generally treating urologists at the University of Michigan, an expert in ED… has only seen two cases (I’m his third). What if a number of us in Michigan went to him? Then he would have a sample. We can pick out the top urologists and endocrinologists in an area, go to them, and even if they don’t have experience, after this they will.

I don’t suggest we all go to many urologists etc. to solve our own problems, but that we tell them about it so that more become aware and look into it themselves. Irwig himself only worked on this after stumbling across this site! And then he got a skewed sample by appealing to the more earnest ones here and published clearly post hoc statistics, which it seems hardly any derms have taken seriously, quite frankly.

Wow, that all did come off rather presumptuous… Again, I know my place and I would appreciate opinions - several others may have done this before.

[whoah]

Absolutely, seeing more doctors increases awareness and discussions. Hell, half of the reason I keep visiting doctors is to do exactly this. Given what they know now there doesn’t seem to be a whole lot that can be done, but raising awareness seems like it may help influence things in the future. After all, a single or a small number cases suggests an interesting coincidence… a pattern suggests a problem. The more doctors that see more patients with these issues, the more likely that it will be identified as a pattern than as a couple of crazy guys. Also, I strongly suggest seeing professionals in research hospitals. We’re never really going to know what happened or whether the condition can be resolved until a major research proposal is funded and approved into the topic. And for that to happen, at some point someone is going to have to win a grant from the NIH on the magnitude of $500-$1000k, which itself is going to have to go through some heavy peer review. More awareness at research hospitals also means that when someone submits a research proposal to study PFS and the proposal goes out for peer review, the less likely it is that it would be discarded as some preposterous hypothesis.

On a side note I know I for one have gotten tired of re-explaining the symptoms, the propecia link (i.e., before and after the one and only pill). So I recommend writing up a document explaining your symptoms, in written updates, in quantitative numbers (i.e., relative severity of symptoms to baseline pre fin levels, updated periodically). This also includes all tests results and dates of doctors visits or procedural tests and, for clarity, an abstract and a set of “highlights”. Sending this pdf along pre visit makes it a lot easier for the doctor to digest.

Finally, your state may have something similar to a Board of Medical Licensure & Discipline. File a complaint detailing what happened and your symptoms, these things do get some noticed. Also, file a complaint with the FDC after three months (indicating that symptoms are indeed “persistent”.

Just more broadly, finding out what fin did is going to require some serious cash for research. Getting that money will require raising awareness, particularly within the medicinal research communities. It’s a hard story to believe and indeed will require more people getting up and going to the doctor. If you have insurance, I definitely recommend using it.