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Author Topic: Peyronies Disease-Petition for U.S-Government  (Read 6001 times)

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Adam

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Peyronies Disease-Petition for U.S-Government
« on: April 18, 2013, 06:26:26 AM »

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                       

With  kind regards.
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rellisacct

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #1 on: April 18, 2013, 11:29:52 PM »

Signed! Only 99,969 to go.  :)
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james1947

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #2 on: April 19, 2013, 02:49:03 AM »

Huge number to achieve until May 09 :(

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Adam

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #3 on: April 19, 2013, 07:42:11 AM »

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.
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Hawk

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #4 on: April 19, 2013, 10:47:06 PM »

Adam,

How did you happen to find this?
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Adam

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #5 on: April 20, 2013, 10:14:32 AM »

Hi hawk, i found it on the APDA- Forum. Someone there has written the petition. I think its quite a good idea.
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ComeBacKid

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #6 on: April 21, 2013, 01:48:03 AM »

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
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phatcat

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #7 on: April 21, 2013, 03:20:42 PM »

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

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. 
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phatcat

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #8 on: April 21, 2013, 03:46:36 PM »

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.
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james1947

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #9 on: April 21, 2013, 06:47:51 PM »

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
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

DO

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #10 on: April 21, 2013, 07:04:37 PM »

I posted it on FACEBOOK...I can only hope some of my friends will sign!
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damian

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #11 on: April 21, 2013, 07:11:26 PM »

DO
That's brave :D
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funnyfarm

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #12 on: April 21, 2013, 07:35:31 PM »

Don't use facebook much, but if I did I would not want to friend you guys  :-X
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Adam

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #13 on: April 22, 2013, 03:28:20 AM »

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.
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ComeBacKid

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #14 on: April 22, 2013, 07:21:05 PM »

Why don't we reach out to Auxilium, we have the customers they need here...
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Hawk

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #15 on: April 23, 2013, 11:25:08 AM »

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.

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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

DO

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #16 on: April 23, 2013, 08:32:30 PM »

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!  :(
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ComeBacKid

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #17 on: July 07, 2013, 11:58:37 PM »

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
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LWillisjr

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #18 on: July 08, 2013, 06:25:07 PM »

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..
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Les - 10 yrs Peyronies Disease free
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ComeBacKid

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #19 on: September 02, 2013, 03:14:08 AM »

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. 
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ao210021

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Re: Peyronies Disease-Petition for U.S-Government
« Reply #20 on: October 23, 2015, 11:30:21 PM »

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.
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