Hi to all, i just found a white-house-petition, which is worth signing. Please do all sign in and show to all out there, that Peyronies Disease is a terrible desease, which has to be put more in public focus to find solutions. Tell all.
Recognize Peyronie's Disease; A Quality of life condition "NOT" a lifestyle choice. | We the People: Your Voice in Our Government (http://wh.gov/MGLP)
With kind regards.
Signed! Only 99,969 to go. :)
Huge number to achieve until May 09 :(
James
Just an idea. Perhaps someone of the moderator-team could create a mass-mail about this topic and send it to all members, if its possible.
Adam,
How did you happen to find this?
Hi hawk, i found it on the APDA- Forum. Someone there has written the petition. I think its quite a good idea.
Adam, your flag is Germany I believe, does your signature count as a german? Can Hawk or anyone verify this is legitimate please and let us know. I'm not an expert with computers, I don't mind signing a petition, I thought all petitions to the white house require 25,000 signatures to be considered?
Comebackid
This is legitimate. It's the white house website. The number required for an official response from the white house was quadrupled in January White House now requires 'We the People' petitions to have 100,000 signatures for official response | The Daily Caller (http://dailycaller.com/2013/01/16/white-house-now-requires-we-the-people-petitions-to-have-100000-signatures-for-official-response/)
It's a good idea if we could get the numbers. Whoever created this could use some activist training and should have coordinated better with Peyronies Disease groups.
The petition is about insurance coverage, which is great. However, it might be a good idea to organize one petitioning the white house to work on allocating money for research. We would need to be really organized for it to be successful. these work really well when they are distributed among "friends" on social media sites. That would be hard for us to do since this is peyronies and not something we talk about with others.
Signature on a petition is time limited, this one May 9.
Our forum have almost 5,000 members, majority from the US, still 5,000 is just 5%.
In my opinion if we would like to make a petition on Peyronies insurance or research, it should be very well prepared with many organizations that have interest in the subject and support from media, otherwise impossible to get the 100,000 signatures.
Maybe some forum members can take on this mission?
James
I posted it on FACEBOOK...I can only hope some of my friends will sign!
DO
That's brave :D
Don't use facebook much, but if I did I would not want to friend you guys :-X
Perhaps its an idea, that each of us informs his uro about the petition and asks if he is willing to inform his Peyronies Disease-patients. Rember its just an email or phonecall, but worth a trial.
Why don't we reach out to Auxilium, we have the customers they need here...
I have had a host of issues tying up my time the last 2 weeks. I agree this was ill conceived since it threatens getting few signatures and diminishing the concern rather than enhancing it. Why would the forum that represents 98% of the online Peyronies Disease community have to randomly happen upon this petition ?? With any thought this could have had some potential positive impact. The first step was to line up support and get everyone on board.
Next, insurance DOES pay for Peyronies Disease so what is the petition about ?? The push should be to get NIH to take it off the orphan disease list. An orphan disease is a rare illness that impacts very few patients and therefore does not attract attention or command much in the way of research.
I strongly support signing the petition since it is there, but one has to regret that it was handled like this.
I spoke with My Uro yesterday about the petition and he thinks it is recognized! He also said I have great insurance! I also checked on the list of who singed on as of today 4/23/13 there was 79 signatures. The sad part not one of my friends on FACEBOOK added their name to help me and us out! :(
Insurance doesn't pay for all treatments regarding peyronies, what are you referring to hawk? It doesn't cover auxilium yet, or VED, I know that for a fact? Whats the deal with this petition, is there a link to it and not an article on it?
Comeback
CBK,
Insurance companies are different. I know there are certain ones that do pay for VEDs. And in my case mine paid for my Peyronies treatments and surgery..
Mine back in the day would only cover a VED for the code erectile dysfunction and not peyronies, and the doctor wouldn't change it so I paid like 550 in cash for one. They do seem to help a bit, old man has been on to something with them, but for me the pentox really helped.
What we need to do is petition the Japonese Urological Association.
Japan just passed a low for early commercialization of regenerative medicine.
There are 48 stem cells trials in Japan currently but there isn't a single trial on tissue engineering the penis.
The reason for this is that only .6% of Japonse men suffer from Peyronie's disease.
If enough people write to Japonese researchers we will see clinical trials there as well. The goal for Japan is to expand medical tourism, but if no interest is shown from abroad they will never have the incentive to do medical trials for penile tissue engineering.