I will preface this by stating that I am in no way connected to Auxillium. But I do want to make you aware of a project being funded and sponsored by Auxillium called "Voices in Action". I totally understand that the ultimate purpose of Auxillium is to market Xiaflex, and that they are preparing for FDA approval soon.
Voices in Action is a project to raise awareness of Peyronies Disease. And I see this as an effective method of raising Peyronies awareness. Whether it be to convince insurance companies to cover the drug, or doctors to use the drug, or policy makers to be in favor of this. At the end of the day I see this as another avenue to raise awareness of this little understood disease.
I am in direct contact with the Voices in Action team. The project is currently targeting 4 states. These states are Texas, South Carolina, Florida, and New York. The Voices in Action team will be setting up meetings in these states with local insurance representatives and policy makers. The team is looking for Peyronies sufferers who are willing to meet with and voice their story. I know we have forum members in each of these states, and I realize everyone must make their own decision regarding their level of involvement and whether to support this activity.
If anyone is interested you can contact me, and I will put you in contact with the Voices in Action team. Following are points to consider:
• This is an unique opportunity to help educate others about Peyronie's Disease (Peyronies Disease)
• Auxilium Pharmaceuticals has created Voices In Action Project, which is looking for patients who are willing to share personal experiences with Peyronie's disease to increase awareness and understanding of the disease
• Specifically, Voices In Action Project is searching for Peyronies Disease patients comfortable sharing their story in person with health insurers and elected officials making important policy and coverage decisions relating to Peyronie's disease.
Following are questions and responses I have received from the Voices in Action team.
Question: What kind of policy decisions are you referring to?
Response: As new treatments for Peyronie's disease become available, insurance companies are going to begin making coverage decisions. We want to help make sure decision makers fully understand the disease and its impact on individuals.
Question: Why is Auxilium interested in what policy decisions are made about Peyronies Disease?
Response: Auxilium is awaiting FDA approval to market a prescription medicine for the
treatment of Peyronies Disease.
Count me in.
Rich Goodrich
Willis,
I live in Charlotte, NC which is literally a hop, skip, and jump from SC. I would be more than willing to share my story.
Quote from: rellisacct on August 16, 2013, 11:39:12 AM
I would be more than willing to share my story.
Thanks!!! I will forward your email address to the ViA team. They can answer all your questions.
Les