by Kristine (Krissy) Anderson
Editor’s Note: This article was written in response to the recent National Pain Report article, CDC Spending $4.8 Million to “Raise Awareness” about Prescription Opioid Abuse.
I would like the consulting agency, ICF, recently hired by the CDC, to know what the chronic pain community knows. I doubt their team for this project is going to turn to pain patients and advocates like us, who have worked so hard, and spent so many years, hours, and moments in pain, reading and researching, chatting with each other here and on Facebook groups, sharing our stories, knowledge and ideas, and the incredible frustrations we have that add to our anxieties and our physical and emotional pain. I would like them to know what the real statistics are on opioid use, and on death tolls, the number of times we read misquoted statistics and misguided studies, and what some of us have gone through because of the CDC’s efforts being geared toward addiction rather than the improvement of the lives of people in chronic, intractable pain.
I’d like ICF to know that the CDC has swayed the general public’s attitude and ignored the real reason opioids exist, and not that OUR medicine should be cut, taken away and patients and healthcare providers be blamed for the “opioid crisis.” There is a chronic pain crisis and I’ll say it more than once. We are not addicts.
I would like them to know about the doctors whose offices have been shut down, some arrested and so many who chose to stop treating patients on opioids and take down their own practices, their livelihoods, in fear of the DEA, because most, by the largest margin, were treating people the RIGHT way. And ICF should know about the large number of areas in our country that simply have no pain management physicians nor clinics anymore, so that patients are either completely isolated or have to travel far distances if they can even find a physician.
I would like them to know about the conflicts of interest in the panels and groups that were put together for the CDC’s guideline development. Do you think they will know what the secrets are?
I would like the agency to understand the knowledge and experiences of some of the great nurses, doctors and other healthcare people who read and comment here — what their opinions are and what facts they’ve shared. I’d like them to know the outcome — from our standpoint — of the CDC’s big publicity push after the guidelines were released and what the press, country-wide, did in handing junior writers and writers who had no idea of what investigative journalism is, a press release on something as big as this. Hundreds and hundreds of articles were published written straight from the CDC’s press releases. How that hurt millions and millions of sick people, ICF may never know. (To the CDC, I’m sure the results of that publicity campaign was a huge success — to us it was a travesty.) Then we nearly laughed when articles came out saying the CDC couldn’t understand why they had such a low approval rating, so they hired an agency to fix that. I don’t have a clue whatever happened with that idea. Does anyone?
I would like this agency to have the list and links to these articles (which I have in a file) and I would like them to read the comments written after the articles where people like us, doctors and pharmacists, nurses and PA’s, writers and advocates made their cases. (And, yep, I’d like a part of that budget money for my time so I can get my electric wheelchair and go somewhere, have an integrative clinic to go to on my disability income, and for other readers to have a share so they can get proper treatment, without stigmatization and fear of being called an addict.) I’d like publishers like the National Pain Report to get a share for devoting their spare time away from regular jobs to working for patients. Yep, that would be nice, because when I owned my ad agency, I worked very hard at researching everything I could about every new client. If there was adversity, I addressed it.
I would like the agency to interview some of you and ask you what you’ve gone through with the changes your doctors had to make after the guidelines were written, like you who were sent straight into withdrawal because your medicine was cut off cold, you who went to your appointments only to find a note on the doctor’s office door saying the clinic was no longer in business or “no opioid medications will be prescribed here from now on.” Stress furthers disease and pain. How did you do? There are so many stores. So many stories.
How sick are we of being told to use alternative therapies when we’ve lost everything and cannot afford them? I’d like ICF to see how many of us had the alternative therapies back when we first got sick or injured (and insurance paid for it), and the statistics on how many benefitted and how many got more injured from them, against how many improved and surpassed their pain. I’d like them to know those of us who wish not to live a good share of the time and why, and learn the stories of those who have taken their lives because one cannot live in high-impact pain all the time. It’s impossible. Some people committed suicide directly after the guidelines were published because they were afraid and felt their last days of hope were upon them.
Because of the CDC’s actions against people in pain, we are treated more and more like dirty addicts instead of patients. This has ballooned more so than before the guidelines were put in place and the publicity started. If only the publicity on the opioid problems addressed the simple fact that there are people who use these drugs as medicine and rightly so! But no. The articles didn’t talk about anyone who needs an opioid as a medicine, only that there is an abuse problem. All of the abuse doesn’t come from our pills in our legally-ladled bottles. Most all of it comes from the streets. Was that mentioned? Sometimes, but the stats were all wrong. Really wrong!
Sometimes we have to remind people that we all “used to be somebody.” What is the most sad part of all this? I’d like them to know, because it’s how we feel when we’ve lost the love, respect and caring of family and friends. For the most part, they believed the CDC’s and FDA’s statistics, not the real ones. You see, one day a person has a brother, but because the publicity that has swarmed this earth, and it being all about the addicts and the illegal drugs or use of the drugs that are OUR medicines, that brother doesn’t understand us anymore, therefore have let us go. Family and friends don’t understand that our medicine is being stolen, misused and altered, but we are not addicts and we are not the problem. The “opioid epidemic” doesn’t address the “pain epidemic.” We are invisible.
We are people. We are the patients of life-long pain that doesn’t get any better and mostly gets worse. We have been through things most people will never be able to imagine. Some patients have overcome some of their obstacles, but most cannot, and we don’t have cures or alternatives. We’ve tried them already.
We have been set aside, our countless and tiring efforts have been ignored, our healthcare professionals have been slapped. Our lives have been zapped.
Finally, I’d like people like Ed Coghlan, CEO of this website, and his staff, who devote their time to research, activism, advocacy and publishing (there aren’t any other sites just like this) be awarded, invited to panels and discussions at the CDC and other platforms, and revered as pioneers in this field. There are others who work so hard to help their own families, such as Steve Ariens and many others, (pharmaciststeve.com link please) whose devotion to work for a better future is his testament to a chronically-ill and pained wife, who has spent years fighting pain and disease.
Let’s help ICF understand this new assignment in full. Let’s hope they remember why opioids are used and for whom they are intended. Let’s hope they don’t continue adding cars to the train and jump on the same bandwagon all the others have. Let’s help them know the truth.
Krissy Anderson is a retired on disability, and works when she can as a volunteer freelance researcher/writer. She contracted Histoplasmosis in the early 1980s, which eventually caused chronic illness and life-long pain. She was the owner of a successful, international marketing communications agency and a model. She was a hard-working fireball with the world at her feet.