By Ed Coghlan.
A group has formed online to fight the CDC Guidelines on Opioid Prescribing.
The Pain Advocacy Coalition launched on January 1st with the goal of crowd sourcing an effort to mobilize the chronic pain community.
“This lets people advocate from our homes and our beds,” said Duane Pool, an Austin, Texas woman who was a registered nurse who was injured and became a pain patient.
One of her partners in the coalition is Ken Adams who lives near Gary, Indiana.
“There can be no more talking about us without us,” he said. “We want to be part of the conversation and where appropriate make sure we are part of it. Bottom line is we want a seat at the table.”
The emphasis of their work, at least for now, is the CDC Guideline. The plan is to inundate elected leaders in Washington and state legislature with messages every month through social media platforms.
The first outreach is planned for February 1.
“We need people from each state to be involved, because this issue is going to be fought state by state,” said Pool.
So how does someone get involved?
On Twitter, the group uses the hashtag #shareourpain, which has attracted dozens of followers in just the past week.
The website, also has a feature called #ResistBot which makes it easier for someone to contact their Congressional representative and their Governor.
A recent provocative interview with Dr. Terri Lewis on the National Pain Report encouraged the pain community to “get on the train or get out of the way,” which irritated some who believed they can’t advocate because they are disabled.
“We have the tools to do this. Engaged patients can make a difference,” she told us.
Adams, who read the article, pointed out that their coalition now lets folks who don’t think they are able to participate can do it sitting in front of their computer.
For now, this “movement” is exclusively focused on the opioid controversy, specifically the CDC Guideline.
They both acknowledge that their scope could expand in the future and include other chronic pain communities, including medical cannabis, kratom and others.