No Relief for Patients Who Fall *In* the Cracks
Illustrations of Rare Incurable Painful Disease and the Illogical Aftermath of the CDC Announcement
*The following narratives have been slightly altered to protect identities and names have changed, however they are true interviews, related with permission.
Every day, Gary is out the door and on the road by 5:30 a.m., driving an old Ford Escort he had left behind 16 years ago when he moved out. It is mottled with rusty splotches.
“The Dinge Dalmatian”, he says ruefully. “I left her behind when I moved to my ‘deluxe apartment in the sky’.”
“I would drive her when I came home every now and then.”
“My nephews and nieces all learned stick shift in the Dalmatian.”
“Never thought I would be back here full time.”
He shakes his head. “I have my MBA. I am also a CPA.”
“Hell, at least I have a car.” He slides a cassette into the tape deck.
Gary is on his way to County Human Services to stand in line.
County offers free methadone to people as MAT (medication assisted therapy) for opioid addiction.
To be clear, Gary is not and never has been an opioid addict or struggled with addiction.
Gary is going there for free methadone as a pain medication.
He went desperate for something to help his severe intractable pain.
He lied to the doctors about his past, his name… everything he told them about himself. They accept anonymous patients, and Gary knew he had to be an anonymous patient.
Gary says he knew that if he allowed his real name to be associated with methadone in the Prescription Drug Monitoring Program (PDMP) tracking database, his insurer would never pay for another prescription opioid medication besides methadone ever again. They would have him flagged as a substance abuser.
Gary hasn’t gotten rid of all his hope.
He says he has to show up every. single. morning and wait in line for his meds.
This is Gary’s fourth methadone clinic in less than three years.
Two clinics switched from dispensing methadone free to dispensing Suboxone® and charging for it.
Gary never returned to either one, as he says Suboxone® doesn’t touch his pain, “among other things, and I am broke.”
Gary says, “Worst tasting pill I ever tried.” He shudders. “My GP gave me that stuff as a sample long back during my taper. I took it. It was the most bizarre experience with an opioid I have ever had.”
He pauses and his hands clench into fists on the wheel, “It didn’t do anything at all for my pain. Nothing. I didn’t feel any withdrawal symptoms from being off the real opioids….That’s it. I was in agony from my disease.”
He turns into the parking lot and parks.
He looks over. “I told my doctor the pain was full fledged. I needed help. My doctor said there was nothing he could do for a week, at least, and that was IF I stopped the Suboxone® immediately. He said it was designed to block all the medication opioids from being absorbed or something.” His facial expression is anguish.
“Why didn’t he explain that to me before I took that so-called medication?” says Gary angrily. “I stopped that garbage right then and there. Of course, you know what happened then.”
He looks down. “I was in unbridled hell for about 12 days.”
Gary is a incurable painful disease patient. He has a very rare, very painful disease called Achalasia, which makes simple pleasures we take for granted (like eating and drinking) torturous for him. He is one of the unlucky percentage that interventions have not helped.
He has tried it all — every kind of “intervention”, surgical, nonsurgical, psychological… even a desperate month spent in an India ashram, huddled on a filthy bamboo mat in silence.
He is forbidden to take NSAIDS, like Advil, Motrin, aspirin, etc… due to risk of GI bleed, warned by three different gastroenterologists.
He is in a high level of daily, non stop abdominal pain. He has had two bouts of pneumonia as a secondary condition due to his primary diagnosis.
Gary used to take prescribed opioid medication daily. Monitored by his general practitioner, he says his pain was controlled “decently”.
“It wasn’t gone. I never expected it to be! I just needed it to be at a level where I was able to get out of bed, attempt to eat, work, and participate in my life actively.” He smiles sadly. “I had a great job.”
“Friends. A girlfriend.”
“A Lexus. Credit cards, nice things.”
“I traveled on vacation every year. I had a fabulous, full life, even with this awful disease.” He smiles in memory. “I remember thinking it would be okay.”
His mood darkens, he says, “Then hell’s bible was published.”
His face tightens. “The CDC destroyed my life.”
Kim is a pretty blond in her forties with bright blue eyes.
(Dercum’s disease is a very rare, very painful chronic disease that is poorly understood by the medical field. To learn more, click the link provided.)
She gestures to her legs, hidden under a knitted blanket.
“Codeine cough syrup”, she says with a laugh.
“All I wanted was codeine cough syrup. It helps so much with my sarcoidosis… the night cough.”
“The Dercum’s? No one understands that except the doctor who diagnosed me and he was too afraid to prescribe opioids for the pain.”
She shrugs and winces as she shifts her legs.
“My PCP told me he had to stop the cough syrup 3 years ago. They were ‘watching him’.” She snorts. “Codeine? It’s not high on the list of desired street drugs, is it?”
She says she went the rounds of specialists, and was told one by one no one would prescribe the syrup.
Some told her it was not even indicated for her disease and she was drug seeking.
“I couldn’t believe that. Codeine has always been used as a cough suppressant. Now I was being told I was crazy? That was nuts!”
She rolls her eyes.
“I had pulmonary experts telling me this. My Dercum’s doctor thought since I wasn’t getting meds for that, telling them about it would help. Hardly! These docs didn’t even know what Dercum’s was, and they didn’t care to understand what it was — they despise informed patients. So it made no difference.”
Kim looks down at her hands. She has long fingers with tapered, natural fingernails that many women would envy.
“I heard so many lectures about my weight, about diets and obesity, because they didn’t understand Dercum’s.” A tear slides down her cheek.
“That process, about a year, made me so…” she pauses, searches for tissues. “It made me distrust medicine in general. I don’t know what the right way is anymore.”
When asked to clarify, Kim says all she learned that year was doctors now view chronic disease patients as the enemy to immediately fear or mistrust.
As a patient, she spent hours before appointments trying to figure out how to present herself as benignly as possible.
“The day of an appointment, I would just be a bundle of nerves. I would obsessively look over my clothes and try to pick out the “right” outfit.”
“Not too fancy, but not sloppy.”
“Not too much makeup, but I have to apply some.”
“Nice shoes, nice purse.”
“If I see a female doctor, all the ‘rules’ are completely out the window and different versus if I see a male doctor.”
“Female doctors are far more cruel to me, I have found,” Kim says. “Every one I have seen has been dismissive and treated me horribly.”
She shakes her head and says, “It doesn’t even matter anymore. I am through even trying. Period. Dot.”
She struggles to find a comfortable position to sit in. The blanket slips off her legs, revealing them.
They are very swollen, misshapen. Large bruises on her calves.
She looks at them, then at me, with a silent plea. I tell her I suffer lipodema. She nods and relaxes, relieved I can somewhat relate.
Kim takes a deep breath, slowly lets it out.
She coughs and says, “That is what they wanted to happen and after what I went through, they win. I exist. I don’t live. This life I live now, it’s existing.”
“The CDC ruined my life.”
Steve is 52 years old and is HIV positive with a slew of related comorbidities.
He received his diagnosis 8 years ago. When he did, he was put on a raft of drugs and cocktails, and he also was prescribed opioid pain medication.
“The pain is intense at times. I don’t think this is something well known about HIV and AIDS, how painful it can get,” Steve says.
“Finding a compassionate doctor was tough, at first. But we have a network, word of mouth, in our community, and I found a great lady doc.”
Steve worked in theater. He says he was stable for a long time. Then his insurer sent a letter 2 years ago, telling his doctor to taper him off his opioids.
“This is the mind blowing part. They said I wasn’t a terminally ill patient because I wasn’t ‘in active AIDS status’, so I didn’t ‘qualify’ for long term opioid therapy,” Steve says, outraged.
“My doc said she was sorry, but she had no choice. They [the insurer] were reporting their doctors that weren’t following their ‘recommendations’, which was supposedly based on the CDC. She told me she couldn’t lose her license over me.”
Steve says he immediately started becoming ill.
“I had been maintaining. She had me on a great protocol and it kept me level. When she tapered me off my pain meds and also took away an anxiety med I had been taking for years [Xanax], it destroyed my equilibrium,” he recalls.
Steve took matters into his own hands.
“When I was tapering off, she gave me Subs [street slang for Suboxone®] samples. She said I could get all the Subs samples I needed through her office, because I was low income. It’s expensive, I guess,” Steve says. He stands up and begins to pace the room.
“I tried them. It didn’t do a damn thing for my pain. I told a buddy the hell I was going through and he told me about the street market for Subs.” Steve sits back down and sighs.
“I was confused. How could there be a market for this crap when it doesn’t work for pain?” Steve shrugs. “Where there is a will, there’s a way. They figured out how to take these apart somehow. I don’t know. I am not a chemist.”
Steve divulges he decided he would see if he could trade his Subs for pain medicine on the street, after a long night of pain, tossing and turning, thinking it over.
“It isn’t like I could trade one for one. But I traded a few, anyway. I was scared to death, and scared of that Chinese crap being in it [illegal Chinese fentanyl] so I got some test strips from the harm reduction center. I was trying to be as safe as possible,” he says.
For a while Steve was able to get a reduced dose of his “old” medicine on the street by trading Suboxone®.
Then his dealer was arrested.
“When Jack was arrested, I went to a darker place. I was desperate, you have to understand. I was barely making it, but I was making it on what I was able to trade with him.”
Steve pauses and buries his face in his hands.
“I went back to my doctor and begged. She refused to prescribe.”
“So I began to trade for heroin.”
Steve said his heroin trades were a lot more risky.
“At least a third of the time I had to throw away what I got because it was tainted with that Chinese garbage [illicit Chinese fentanyl].”
“Then I would have to go out and try again, immediately. One time I had three trades in a row that were tainted,” he looks at me to gauge my reaction.
Steve is up pacing the room again. He lights a Marlboro Light.
“I feel like I had no choice. Who told these people they had any right to do this to me, to us?” he demands.
Steve’s luck ran out right before Christmas 2018.
“I traded for a tiny bag of black tar, and I woke up in the hospital. I apparently overdosed,” he says in a small voice.
“I was so careful, always tested each batch, new needle every time… still overdosed on heroin laced with illegal Chinese fentanyl,” he says.
He stares at me for a second, before covering his face with his hands.
“The kicker? My labs came back while I was there. I was in full blown AIDS. My doctor had me in her office the day after I discharged and gave me my prescriptions.” Steve says tonelessly, “Three months later, I had stabilized, I was no longer in active AIDS, and my insurer again kicked in with another letter, demanding a taper.”
“The CDC has wrecked my life.”
Patients are suffering.
Patients are bed bound.
Productive citizens who were working and making a good living lost everything.
“Patient centered” and “individualized” are the buzzwords required, the words that must be found in every presentation and report at every 2019 healthcare summit.
The reality is the polar opposite.
“Conformity”, “one size fits all”, “no one is unique” is what is truly being forwarded.
“For the good of all”… of course.
Dysfunction is rarely defined as clearly as this, especially in such a public manner. Usually we apply the word to interpersonal relationships.
However the dictionary definition of dysfunction is “failure to show the characteristics or fulfill the purposes accepted as normal or beneficial.”
That should satisfy the psych majors at Stanford University.
Stakeholders began their War on Opioid Therapy based on a flawed ideology.
In an attempt to get so-called malingerers “back to work”, they have instead made productive citizens jobless and reliant on government assistance.
They have rigged the game.
The essence of “define irony” is revealed here when we consider clueless stakeholders insisting patients utilizing opioid therapy “were lazy people who sat at home and refused to work”.
Yet these same out of touch stakeholders turned a blind eye to thousands of patients who worked full time only because they had their pain properly treated.
As per usual. Those in the ivory towers and walnut trimmed boardrooms had zero actual real knowledge of their subject matter, only flawed stereotypes, only knowledge of a caricature.
They built this all on the shifting sands of their imagined realities. It’s nothing new.
Clueless snobbish political bureaucracy.
A Federal Agency Gaslights a Nation
On April 24, 2019, the Centers for Disease Control published a clarification to their horrific 2016 Guidelines for Opioid Prescribing in Treatment of Chronic Non Cancer Pain in the New England Journal of Medicine.
In clarifying, the CDC blames physicians for the catastrophic wreckage in the wake of almost three years of disastrous patient care and opioid legislation following their 2016 guidelines.
The whole truth is the CDC Guidelines were illegally implemented, therefore, every policy in state legislation and insurer patient care is also illegally applied.
This walk back by CDC.gov should be a monumental relief to every single state and agency that foolishly rushed headlong to apply these illegal guidelines in the first place.
Every single state and insurer should quietly excise their “CDC inspired policy”.
Pressure should be brought to bear immediately on the D.E.A. to make an announcement ASAP that they will stop applying these illegally implemented guidelines in their foolish PDMP (Prescription Drug Monitoring Program) witch hunts against physicians.
How ridiculous is it a federal law enforcement agency is using illegally implemented guidelines to arrest people??
It would seem a sure way for any attorney worth his/her license to use the fact D.E.A. is wielding the pseudo authority of illegally implemented guidelines in arresting physicians. It surely seems a point worthy for any who are being harmed by overzealous charges to file for an immediate injunction for relief and punitive damages in the bargain .
The Study Influences It All
However — this is not happening. States are still crafting policy based on the erroneous CDC guidelines.
It is not happening because the application of the CDC guidelines, illegal as it were, was all part of the grand scheme by the group who crafted the government clinical trial/population study the American people are currently undergoing.
At this point, anyone who denies this reality is actively denying the truth of the matter.
We see that this population study is all encompassing.
The most important thing to them.
Even in the face of the CDC Guidelines being “corrected”, no patient is being helped.
The people in the stories above, to date, have not.
**Edit to add** — >
I didn’t add this in the original piece, but I am going to add it now. It needs to be SAID. It needs to be UNDERSTOOD.
A very close friend only of mine received the news only 5 weeks ago that her father had advanced metastatic cancer. He was given a grim prognosis.
He had several large tumors causing pain throughout his body. It was so advanced they could not do surgery. It would be pointless and make his last few weeks of life miserable… worse than they would already be.
He received his care through the VA in New York State.
He was offered Neurontin for his pain. No opioids.
They also gave him an injection of steroids by a nerve in his shoulder that was causing pain. This did nothing.
My friend’s father passed away yesterday.
After a few weeks in misery.
This all occurred in the midst of the CDC revision.
When a few weeks ago, the CDC stated very clearly cancer patients needed to have their excruciating pain treated immediately without question.
So… why did this wonderful man get offered an anticonvulsant that is worthless for pain?
Why was he and his family gaslighted?
Was his risk for addiction so high that he was deemed “not worth” the risk of prescribing?
Did they believe he would be out there, trying to score drugs on the streets?
How absolutely insulting and ridiculous.
Does everyone see exactly how worthless the CDC “revision” is in real time application? The worst thing is — here we are again, the guidelines being applied to a population it never was intended for.
The whole point of this is that these “powers that be” intend to take all pain medication away from all people. There really is no “qualifiers” like cancer, legacy patients etc… and this above situation perfectly highlights their attitudes.
They will not go without appropriate and immediate pain treatment.
That is a reality as sure as all the other “rules” in this detestable power play.
We certainly have not seen anything to suggest they are being treated like the peasantry in regards to Appriss, Inc’s., Narxcare & Gateway systems or Brandeis’ PDMP Assist in the 100 year old pharmacy outside Congress.
They are supposed to be, however, they surely are not.
The damage is done. They know it is complete. It is sickening and sad.
Patients with rare incurable painful disease have been all but lost in this witch hunt against opioid therapy.
Reading through all the Task Force reports and assorted outrageous legislation since the hysteria has reached its peak, any patient with a rare incurable disease feels extreme frustration.
It’s as though stakeholders and all involved do not even realize people exist with rare, different painful incurable diseases.
It appears they believe the only people in the United States that exist with painful disease are people with musculoskeletal diseases or fibromyalgia. It’s outrageous. Most of the suggestions and mandatory interventions do not even apply to diseases that are not musculoskeletal or fibromyalgia, therefore those of us who do not suffer those diseases are left twisting in the wind, ignored.
I imagine they just hope we die off like Andrew Kolodny hopes we will.
The HHS task force report will be a reflection of the National Pain Strategy, and that strategy will be ushered in, full force.
The National Pain Strategy was unveiled two days after the 2016 CDC opioid Guidelines dropped.
The Strategy was always the goal.
The 2016 CDC guidelines for opioid Prescribing were used to engineer society into accepting the National Pain Strategy.
After the horror of the guidelines fades somewhat and the dust settles, the American people will think the National Pain Strategy looks wonderful… well, at least compared to the 2016 CDC Guidelines, right?
Nevertheless… patients will continue to suffer and die as they have been to date.
Those in power believe that they can throw these little concessions at patients, while…the patients won’t notice no one is being helped until it’s too late.
Our message is simple.
Pain should be treated swiftly with compassion. We have the medication to do so and years of statistics proving that patients aren’t the population we need to worry about in regards to addiction.
That this needs said in 2019 is incredibly sad.
Pain should be treated by a patient’s physician, who is trained and licensed to do so.
People in legislation are not licensed to practice medicine. Practicing medicine via legislation should be illegal.
The study of citizens in this manner is wrong. The forced compliance of citizens in a clinical trial without their informed consent is wrong and supremely evil.
A hidden population study that harms people is wrong. There is no framing it positively, despite the attempts I have seen to do so.
Privacy and security should be first.
We should have the right of refusal in the practices of our medical information being used for profiteering.
We deserve transparency in patient and health care.
Until the above is achieved, there is no real democratic Republic in America.
The only truly free society is an informed society.
Heather Wargo is a Medium Top Writer in Government, Privacy, Politics, Health, and Social Media. She is a freelance writer and advocate for incurable painful disease patients and physicians affected by governmental overreach.
Ms. Wargo is a member in good standing of the Society of Professional Journalists.
Heather Wargo has been published by The Western Journal, Lifesite News, The Ascent, P.S. I Love You, Publishous, Uncalendared, The Writer’s Cooperative and Writer’s Guild.
Thank you for taking the time to read this piece.
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That Little E-Book, the Institute of Medicine, and the CDC Guidelines
The Institute’s odd little e-book was the framework of the ongoing population study, but the public at large has never heard of either…