By Taylor Knopf
Amidst the opioid crisis, calls have been pouring in to the North Carolina Medical Board from chronic pain patients who say their doctors have stopped prescribing their pain medication.
Some patients say their doctors cite opioid prescribing guidelines created by the Centers for Disease Control and Prevention in 2016, which sets daily dosage limits and recommendations for tapering patients to those limits.
Other patients call and say their doctors handed them a copy of North Carolina’s STOP Act, a 2017 law that limits the number of opioids for acute pain, such as a broken ankle or a wisdom tooth extraction.
And then there are some providers who say they fear that the medical board will sanction them if they prescribe opioids.
The North Carolina Medical Board surveyed its medical licensees to see how they have responded to the opioid crisis. Of the 2,661 survey respondents, 58 percent said that their practices had been affected by the opioid crisis. Of that number, 43 percent — or 663 people — indicated that they had ceased opioid prescribing altogether.
The medical board’s message back to them: “We are pro-appropriate care, not anti-opioids.”
“Treat with opioids when it’s appropriate,” said the board’s spokesperson Jean Brinkley.
“Prescribers should be thoughtful, and carefully documenting treatment and reasons,” she said. “If it’s appropriate, make sure the record is clear. That’s the board’s expectation.”
Culture of fear
The N.C. Medical Board has a professional outreach program and board staff spoke about once a week last year to professional audiences. The number one topic: appropriate opioid prescribing.
“Anecdotally, we’ve had people look the speaker in the eye and say, ‘That’s fine, but we don’t believe you,’” Brinkley said. “The fear factor is real.”
There is so much scrutiny of opioid prescribing because thousands of Americans are dying from drug overdoses — largely from heroin and fentanyl — each year. And according to the National Institute on Drug Abuse, 80 percent of Americans using heroin reported misusing prescription opioids before turning to heroin. However, there has been a sharp increase in the last decade of people who initiated their opioid abuse with heroin and not prescription drugs.
Read Part 2: Uncontrolled Pain: The Other Side of the Opioid Crisis
Read Part 3: Complex Pain Problems Put Patients in a Bind
Those statistics and the fear of scrutiny by the Drug Enforcement Administration or an investigation from the state medical board makes physicians hesitant to prescribe opioids.
In 2016, the North Carolina Medical Board launched its Safe Opioid Prescribing Initiative, which included investigations into licensees who manage many patients on high daily doses of opioids and licensees who have had two or more patients die from opioid overdoses in one year’s time. The initiative also included training for physicians around the state on the STOP Act and better prescribing practices.
Since then, the board opened 111 cases, which accounts for 0.2 percent of all active licenses. The large majority of those cases stemmed from patient deaths. In the end, more than 60 percent of the investigations closed with no action against the prescriber.
In a letter to licensees, former medical board president Eleanor Greene empathized with physicians who feel like they are in a tight spot with opioid prescribing.
“There is no simple answer to this question. I can only say that treatment decisions must be guided by clinical judgment individualized for each patient, not by a desire to avoid Board scrutiny or regulatory action,” Greene wrote.
“Sometimes clinical judgment may lead to a course of treatment that diverges from specific recommendations contained in the CDC Guideline, but is the best option for the patient,” she noted.
The board adopted the CDC’s opioids prescribing guidelines. But Brinkley said the message around them has always been that they are “not regulations and they don’t set the standard of care in all contexts.”
“It’s hard for me to envision what more we could do to get that message out,” Brinkley said. Nonetheless, she said that “we regularly get calls from patients that they can’t get care for pain.”
CDC guidelines and ‘insufficient evidence’
The definition of chronic pain varies. The CDC defines it as “pain that typically lasts more than three months or past the time of normal tissue healing. Chronic pain can be the result of an underlying medical disease or condition, injury, medical treatment, inflammation, or an unknown cause.”
The CDC says that about 11 percent of American adults report feeling pain on a daily basis and that between 9 and 11 million U.S. adults were prescribed long-term opioid medication in 2005.
The Institute of Medicine states that pain is a public health issue that affects more than 100 million Americans.
The CDC guidelines made 12 recommendations for treating patients with chronic pain ranging from when to initiate opioids to follow-up care.
The guidelines rate evidence to support recommendations on a scale of 1 to 4.
“This hierarchy reflects the degree of confidence in the effect of a clinical action on health outcomes,” according to the CDC document.
Type 1 evidence means there was overwhelming support from randomized clinical trials and studies. Type 4 means there is “little confidence” and the evidence is “considered to be insufficient,” according to the CDC.
Surprisingly, the majority of evidence backing the CDC’s 12 prescribing guideline for chronic pain patients is Type 4, the lowest and most insufficient.
“Although there was widespread agreement on some of the recommendations, there was disagreement on others,” wrote CDC staff. “Experts did not vote on the recommendations or seek to come to a consensus. Decisions about recommendations to be included in the guideline, and their rationale, were made by CDC.”
The CDC sent copies of the drafted guidelines to these experts to review. However, they were not asked to review the final guidelines before publication.
A few doctors push back
“They say repeatedly that all the scientific evidence is of low quality. Well, the problem is, there’s no category lower than that. Low quality means no quality,” said Thomas Kline, a Raleigh chronic disease physician, who’s an outspoken critic of the CDC’s opioid guidelines.
“I became concerned that the CDC was going to come to my office and sit there, tell me how to prescribe,” he said.
Kline argues that it’s not the CDC’s place to tell physicians how to prescribe medications. He believes that it’s the role of the Food and Drug Administration (FDA).
And Kline’s gained quite a following in the pain community for his stances. He took a countercultural approach to the drug overdose epidemic in his News & Observer opinion column last year called, “The myth that prescriptions caused the opioid crisis.”
His Twitter account has grown from about 400 followers to more than 26,000. And his pinned tweet is a running list of people that he claims have taken their own lives due to forced tapering of pain medication.
He believes the maximum dosage limits set by the CDC are arbitrary, but that “people love even numbers and glommed onto them.”
Steven Prakken, a psychiatrist and pain physician with Duke Health, agrees that the prescribing limits are just arbitrary numbers.
“People are going to drive for that number, regardless of function, regardless of outcome, regardless of patient harm,” he said.
Prakken said that the CDC relied on very conservative voices in researching its guidelines, gathered them very quickly, and didn’t respond well to outside feedback.
He said he believes the CDC hand-picked the experts they wanted in order to get a “particular flavor of opinion” and that “was not appropriate.”
Meanwhile, the FDA has taken a much more careful approach to chronic pain, holding a lengthy public meeting, listening to chronic pain patients, and soliciting public opinion.
Who will treat pain?
Prakken says he’s feeling the effects from other physicians who have stopped treating pain patients.
“Doctors are saying, ‘It’s against the law. I can’t write. I’m going to get in trouble for writing,’” Prakken said. “And I get those referrals every day.”
As doctors “flee the pain space,” he said that patients still need care but often have nowhere to go. And they can become desperate.
The waitlist to get into Duke Health’s pain center to see Prakken is more than six months long.
Kline has re-focused his practice to take solely, what he calls, “pain refugees.”
These are people with chronic pain who have been turned away by at least 10 providers or pain clinics and who have become desperate — even suicidal — because of it.
Tomorrow: Pain patients push back.
Clarification: The initial version of this story stated that “more than a thousand” North Carolina doctors said they had stopped prescribing opioids. During the reporting of this story, a representative of the NC Medical Board confirmed in an email exchange that as many as 1,144 licensees had stopped prescribing opioids as a result of the opioid crisis. After publication, the Medical Board notified NC Health News that they had given an incorrect number of licensees who had changed prescribing patterns. The actual number is 663.
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The 43% of doctors quitting the practice of treating pain is similar to national surveys. This is pushing more people to pain clinic many who do not prescribe pain medications but push injections the new “injection mills” which is far more dangerous that “pill mills” about of 1/3 of pain clinics appear to be extorting the patients – do these injections first then we will treat you with pain medicine.
Again, CDC is voluntary by their own admission thus non-binding
FDA is congressional mandated thus binding. Two conflicting agencies. Who should the doctor chose to follow? FDA with no prescribing limits, CDC with limits
What is the legal ramifications for doctors who cause harm by forceful, no consented “tapering” of vital therapeutic medications claiming the government made them do it, and ignoring the no cutoff legal mandates of the FDA?
Opioid Use Disorder is not addiction. SAMHSA changed the definition to anyone prescribed an opiate who takes it differently than the doctor prescribed (on the bottle).
Who doesnt do that
2 million confessed OUD by $35 a head survey. 500,000 heroin users from the data about the same rate as in 1925
Addiction is not increasing, only deaths from addicts trying harder to maintain their pathophysiological homeostasis due to making addiction disease a crime, which it is not, not by a long shot.
Confusion is between type 1 choice addictions and type 2 no choice addiction (opiates and nicotine)
I have had gastric sleeve surgery and told NOT to use tylenol ..aspirin..etc..My Dr.moved had to get another Dr. Everytime I saw her she came in with a list of my meds and kept on and on about my oxycodone.. finally she refused to give it to me..I have been on it for 20 plus yrs and have NEVER abused it.. I had a colostomy 6 wks ago and had 11 polyps 7 were precancerous and the Dr asked me had I been taking tylenol etc and I stated yes because the Dr would not prescribe my pain meds and he stated..No more tylenol etc that I had already caused a 2 inch weak spot ..What am I suppose to do??? I have severe arthritis in my back and neck, had a knee replacement and after much testing was told I was allergic to the hardware and cement..after 2 yrs I am still on my walker ..only 64 yrs old..and I cannot stand on my knee after 4 to 5 hrs of being on it..honestly I cry and pray…what are we suppose to do people!!! I also took ativan because I have PSTD and bad panic attacks and now I can’t have both..or none at all..I have to choose and again I have been taking both for over twenty years..I have lost my job because I can’t concentrate and can’t be on my feet all the time . So I now have financial problems along with pain and severely depressed..ALL BECAUSE THE DOCTORS ARE AFRAID TO PRESCRIBE MY MEDICATION . The people who have done this to people who really needs their meds and ARE NOT addicts..what is my recourse????I DO NOT want to be disabled ..I want to work and be self sufficient, pay my bills, not in pain all the time to the extent that I cry numerous times a day , be depressed, feel like my heart is going to beat itself to death, feel like I am going to have a heart attack, feel like I am smothering I am NOT an addict ..one last thing my husband is dying from COPD from smoking my Dad died with COPD..I hate cigarettes…my husband keeps on smoking..why can’t they do something about nicotine addiction, people die everyday because of it ? ???? Thanks for letting me vent!!!!
See if you can find a doc to put in your chart that your a palliative care paicent! Then you can have benzos and more tban 90MME, and sleep meds and in most states – more pain modalities like massage and accupunture…
Not a single journalist with medical background is writing about the differences in the medications. Fentanyl is what’s killing people. Fentanyl is being shipped in. Vince analogies for operative procedures OxyContin is used for pain relief.Donely thing that’s being printed is associated with human interest stories which tends to put everyone in the same basket. This is the worst reporting across the board, from the New York Times on down, I have ever seen.
Marsha Hammond, PhD, licensed psychologist North Carolina
Let me tell you, you are right. Injection mills are way worse. I forgot the medical term but about 5 months ago my hip did not break, it died. I have never been in such acute pain in my entire 62 years. I was in pain management for 5.5 years. I can’t begin to count the injections. I was also on MS Contin and 15 mg roxiecodones for break through pain. ( of course I built up to that dose over a 3.5 year period)
I had major, 16 hour, back surgery. The pain was gone. I weaned by myself off of all pain meds in 6-8 weeks. I have no long term effects from the pain medicine as far as I know. I do have long lasting problems from the injections.
Hips do not die without a reason. The two common reasons are alcoholism and steroids. I probably have 2 or less drinks a year.
Since the hip died it has been a nightmare. 2 hip replacements in 3.5 MONTHS and 8 dislocations. I never know when the next dislocation will be, it is on my mind hundreds of times a da y.
Give me a pain mill over an injection mill any day of the week.
Thank you so much for writing this article. Finally someone is reporting the truth, especially about the CDC and their anti-opioid guidelines, about the fear that is everywhere in pain treatment. Doctors are in fear of losing their practices, their livelihood, everything they have worked for. Patients are losing their function, they can no longer work to support themselves, they can no longer care for their homes, their children, themselves!
I bathe every 7-10 days. I have herniated discs in my neck and upper back, it’s so painful. I rarely have sex with my husband, when I do I grit my teeth and bear it. It’s too personal talking about this, and so embarrassing. But, how long before I am divorced and alone? How long before I lose everything because I am being punished for what drug addicts do?
Can you see how this affects all aspects of our lives? It doesn’t have to be this way, it wasn’t this way before opioid hysteria. I don’t want to be disabled, and it’s unnecessary, when I had proper treatment with opioids I just enjoyed my life.
I promise you that you are not alone. I have severe issues with my neck which are the same as yours. I have many cervical spinal issues and like you, I know about the grin and bear it.
Luckily, I do have a husband that is understanding. He is not going anywhere. I pray that yours does not as well. We just have to got to keep fighting and pushing back and speaking out. For far too long we have been quiet, especially considering that women seem to make up the majority of pain patients. Please do not give up fighting and don’t be embarrassed.
For every condition or problem that someone is going through, I guarantee you at least one person reading this is having the same problem. We have got to keep fighting. I refuse to give up or stop talking about this. I will continue to fight. I have too many things about life I adore, especially to people and I’m sure you do too.
Join others who are fighting back, writing their representatives, the medical board, speaking out and saying this is not OK! We have to keep going because finally at least someone is starting to listen and now we have reporters as amazing as Taylor who are telling our stories for us. Let’s keep going! Remember you are not alone!
Live in a day / week of people in actual pain and then how this medication can benefit. We may not be in casts or back braces but the pain is surly there. I agree on overdosing, that is not uncommon. And hopefully that will be settled. But for people trying to live normal lives with their medications, need a break! And I’m sure a lot out there will not see the same as me, and that’s fine. Cause that makes me see u don’t know what pain is. We only use it for PAIN that cannot be treated with multiple surgeries unfortunately. Someday it may change, fingers crossed xxx
As both an activist and a chronic pain patient, I sincerely appreciate you for writing this article. As a community of over 30 million chronic and intractable pain sufferers who have exhausted all other alternatives for pain management, we have been fighting an ivory tower of non-partisan anti-opioid zealots as well as a nation of citizens who readily marginalize us as drug-seeking addicts. A majority of the media are partially culpable for this stigma.
Thankfully wise reporters, producers, writers and editors such as yourselves are finally seeing the “other side of the opioid crisis” and are sharing our plight.
Just as Dr. Thomas Kline, MD has stated elsewhere in the comments, WE ARE BEING ABUSED BY INJECTION MILLS and coerced into receiving dangerous and ineffective injection therapy just to continue Longterm Opioid Therapy.
Until and unless we convince the DEA to suspend their draconian policies of raiding and arresting legitimate physicians for treating chronic pain patient’s issues with a relatively safe and very effective—and legally manufactured—medication, we will continue to watch our quality of life erode.
STOP PUNISHING PAIN PATIENTS!
#dontpunishpainrally
Why not make where you have patient who are being prescribe opiates to go view a video that would tell the pro and cons of opiate, difference between dependency and addiction, side effects, dangers of taking more then prescribed and then the dangers of drink alcohol and using sedatives drugs with opiates. Also mentioning things about locking up medications so they do not get stolen in the wrong family members hands of danger of giving the medication to anyone else. After they see the video they can ask the doctor or nurse any question then have the patient sign a release that the patient does not hold the doctor responsible if they take more medication that is prescribed or uses any drug or supplements without doctor approval with there medications. This would put responsibility on the patient but would also teach them what they really need to know about opiates. It is time for patients to take responsibility and most pain patients have no problem with having the responsibility of there actions instead of having the doctor being there babysitter.
Wonderful article. Interestingly, when my doctor of 16 years was arrested by the DEA (for what I’m sure is simply because he was writing higher doses of opioids than the DEA liked), a certain NC doctor, who is prominent in this article, was one of seventeen doctors, mostly in NC and but also around the country, who refused to treat me. I get disgusted when he is held up as one of the doctors who supports prescribing for chronic pain sufferers. I’ve since moved back to my hometown in GA, where my family lives, so they can help my wife care for me. As a 27 year chronic pain sufferer, I’ve experienced a lot of negatives, but never as bad as the last four months. I am now having to fly to Houston, TX, once a month, to endure forced titration reduction of my meds. I am suffering now as much as I ever have, and it’s hard to find a reason to continue. I have Traumatic Brain Injury due to electrocution in 1991. As bad as things are, it’s even tougher when the “hero” of chronic pain sufferers turned me down. Hypocrisy personified.
Honestly be thankful you uav3 the means TO travel to Texas for treatment every month i am hav9ng trouble getting out of High Point Nc to find a dr who will CORRECTLY treat my pain
Taylor,
Thanks so much for your continued attempts to bring timely and accurate information to the public. I mentioned to you at the MAHEC Opioid Epidemic Conference a few months ago that I loved your writing. This is the reason why!!
Chip Palmer, MSW, LCSW, LCAS
AVL
The question is, what happened to the patients that were already dependent on opioids? Were they provided with adequate medical detoxification, or were they left to suffer through withdrawals? Also, what about those with severe chronic pain, where they offered alternative pain management that provided them with relief, or they were left to find a new doctor ( what is almost impossible, when you are opioid dependent)?
I am the first to witness that most patients we detox from opioids, could have been prescribed alternative pain management options. I also see that in most cases, the opioid dependence has been more detrimental to patients quality of life, than the original injury. With that said, they are patients who trusted their doctors in providing the best and safest treatment available. Now that there is a crisis, we can’t abandon the real victims.
Patients need to be assessed individually and provided with the treatment the best fit their needs. It is all about quality of life.
Why arent these drs banning together and suing over this?how can they harm innocent suffering people by taking away the one thing that helps them it is sick. If they arent breaking any laws then why torture people they are the professionals and unless they enjoy harming people I see no other excuse why they are forcing people off or cutting their medications. They are cowards and shouldn’t be a dr .!evil. Just evil.
I am being cut and I am ALREADY BELOW THE 90MME its ridiculous. That 2 pills a day means the difference if me being able to support myself or not. What a nightmare I wish I could afford to move to another country that actually cares about those suffering. These coward drs should be ashamed of themselves and I pray for each one of them to suffer as we are and be refused any relief.