A Message to the Pain Community:
Many of you were led to believe that sharing your pain story with elected representatives would help you get your rights back. I am sorry to inform you; it’s not that simple.
Pain Organizations, the Academic Lobby, & Pharma, have been using our suffering as a talking point to advocate for research funding. The academic researchers, their co-opted patient representatives and media outlets that represent our community have failed to discuss the things our community desperately needs to know; all to our detriment.
We need to be aware of the existing systemic issues we face in order to effectively advocate. Sharing our pain stories does not help us, it actually hurts our movement. We have seen what takes place behind the scenes in Washington D.C. when our representatives review patient pain stories. They don’t read them with an ounce of compassion as they view everything through an economic and political lens, only taking pause to consider the “bottom line”. Until the public learns and accepts this fact, they will unknowingly participate in their own exploitation via unscrupulous/dishonest organizations and academic researchers.
This is the unfortunate reality that the pain community faces.
Nobody in Washington D.C. cares or sees the faces behind these pain stories. Neither do the pain organizations or academic researchers; patients are nothing but a data source and/or talking point to them.
Our report, Violation of a Nation, uncovered the history of the CDC Opioid Prescribing Guidelines, how they came into existence and how they connect to the Learning Healthcare System. Yet, nearly 5 years after our report was published, the pain community has received no educational insight regarding the facts revealed in the report because pain organizations and industry associates did everything in their power to distract the public from the truth while directing the public focus onto the CDC as the sole agency to blame for patient suffering.
The public will never access the help they need with advocacy industry representatives standing in the way, failing to disclose the facts behind what is happening. This is what we at Citizens Interest have been focused on the whole time, teaching the public about the reality of current policy implications; but what would make a bigger difference, is for more industry associates to speak out in an effort to educate the public on the reality of the situation in lieu of asking for pain stories.
Seven years of pain stories have led us down the biopsychosocial road to nowhere. One cannot do the same thing over and over and expect a different result. Citizens cannot engage in advocacy when they do not understand public health policy. Patients cannot continue to hand in their pain stories expecting a positive outcome. Industry representatives, lead “advocates” (who are there to influence patient behavior) can no longer be allowed to undermine the citizens interest. Isolating people from the truth while calling the actual truth a “conspiracy” will no longer be tolerated.
In the year 2024, this unacceptable industry behavior should not be taking place. It is time for We the People to take our autonomy and our rights back.
Thank you,
Citizens Interest