By Ed Coghlan
When we published a year-end story with US Pain Foundation Founder and President Paul Gileno, he was calling for unity among pain advocacy groups in order to create more influence for the 100-million chronic pain patients in the U.S.
Gileno, who runs the largest and most influential pain patient advocacy group in the U.S. has written a letter to his group that seems to indicate that unity is not going to be easy to achieve.
“People with chronic pain need to have one voice,” he told the National Pain Report. “And those of us who advocate for the patient need to make sure that it’s the patient…and not our personal ambition…that is the focus of our work.”
He declined to say who he was referring to but admitted that he was growing “increasingly frustrated with some others in the advocacy realm” some of whom he believes are looking for a “quick five minutes of fame” over the interests of the pain patient.
“I’m not going to attack anyone, it’s not my style,” he told the National Pain Report. “I do pledge that we at the US Pain Foundation, which is the largest pain organization, will never forget that it’s the patient and not us who need the attention.”
Here’s a transcript of the open letter Gileno wrote to his large group:
Being the Founder and President of U.S. Pain Foundation is a privilege and honor. I take the role very seriously, as I know living life with pain is a serious matter, as a person with pain I understand the challenges we face on a daily basis and want to make sure my attention is focused on making sure we are empowered and educated on this pain journey. U.S. Pain was created because those with pain, like myself, needed an organization that supported them along their journey. I see every person who joins our E-Newsletter list, becomes an ambassador or member of our online support community as family. We are a unit that together is able to accomplish a lot of positive change for the pain community.
When I started this foundation five years ago, there were hundreds of members. Now, we are considered the largest, leading patient-advocacy organization in the US and the largest pain organization. I am committed to keeping the integrity and vision at the forefront of every decision I make. US Pain Foundation is not about me it is about all of us.
That means I will never sell out. The programs, initiatives and campaigns we craft exist because they offer those with pain help, support, empowerment, community and a voice. The pain warrior – you, me … and the millions of others like us nationwide – will always be priority, our voices unified and one.
Not once has the creation of this foundation been about boosting my ego, finding public notoriety or obtaining fame. I am here to serve you. I will never jeopardize our mission or passion to gain 5 minutes of fame for myself. The work of US Pain Foundation is 100% genuine. There are no strings attached or ulterior motives. All that I care about is further enhancing the lives of people suffering with pain, and we will continue to do so in a discreet and powerful manner. If we are going to be taken serious to make change in our lives we need to be serious. I speak for people with pain because I am a person with pain.
I take advocacy work seriously. I take validating our stories seriously. I see each person as part of the greater picture, and that we are all equals in this journey. My pledge to you is this: I will never seek 5 minutes of fame and claim I am doing it to raise awareness. I will always be mindful of your story because it matters most. I will fight each day for people with pain to become educated, empowered and advocated for. I will always be a professional and work hard to make you proud.
Wishing you a low-pain and high-spirits day,