By Ed Coghlan.
The readers of the National Pain Report have had varied reactions to the exhortation to the chronic pain community by Dr. Terri Lewis in an interview last week.
The long-time outspoken chronic pain patient advocate has been pushing for more action by the chronic pain community and wrote two essays for the National Pain Report instructing folks how to get involved at the state level (see below).
But when she stated in last week’s interview that the chronic pain community needs to get on the train or get out of the way, it set off a debate.
Some of the very people she has been advocating for, were offended.
A typical reaction was one posted by Jay Schankman who wrote: “How exactly are pain patients to advocate for ourselves? If we know what works and we ask for it we will never get it.”
But for Lewis and many others, her words about fighting state and federal bureaucracies and organizing efforts drew plenty of support.
One from another activist, Richard Lawhern, caught our attention.
Okay, folks, let’s take a deep breath, please? I understand both the points that Terri Lewis is making, and the concerns expressed by largely disabled patients. I’ve been talking with people in pain for over 20 years about these concerns. May I suggest a meeting place for the two points of view?
Many patients feel (and truly are) so disabled that they cannot do very much to advance the cause of sanity in the treatment of others like themselves. However, if you can write a letter of complaint to National Pain Report, then you can write a letter of complaint to your Congressional Representative. Or you can look up a phone number of your local newspaper editor or television news anchor, and place a call. Invite him or her to send a reporter to your home, to see “the human face of pain” and “the other side of opioids”, before writing a story about people like you.
Likewise, where are your more able-bodied caregivers? Have they read this article? If not, then why not? Anybody who can walk, chew gum, and drive to your State Capitol can schedule a half-hour appointment with the healthcare legislative assistants of your Governor or State Assembly person. I and others in the Alliance for the Treatment of Intractable Pain can back you up with briefing papers or a phone call to rehearse what you may wish to say.
I know that chronic pain patients have it tough. My wife and daughter are pain patients, so I face this issue every day. But I also know that Terri is very largely correct in her insight: if patients themselves and those who love them don’t require change from our legislators, then nothing will change. And letter writing by itself isn’t enough to bring that change about. Some of us must go in person to demand that our legislators grow a backbone and start refusing campaign contributions from Insurance companies and the owners of addiction recovery centers.”
Editor’s Note: Dr. Lewis, as a daughter saw her father deal with chronic pain and as a mother she has a son who is a chronic pain patient.
Her recent recommendations on how to become active are here.
By the way, don’t expect Terri Lewis to quiet down. She shared that groups are forming in every state to fight the CDC guidelines and the resulting patient care challenges.