A Pained Life: Stop Terrorizing Doctors

By Carol Levy, PNN Columnist

When I visit chronic pain support groups online, it is almost astounding how often posters turn to talking about the “opioid crisis,” no matter the subject of the initial post. One person wrote that she lives in a town where there is not one doctor who will prescribe opioids, no matter what the diagnosis.

I see comments like, “My doctor won't prescribe them for me anymore even though they were helping,” or “My doctor reduced what I was taking without any effort to ask how I was doing.”

Often they’ll add, “My doctor said he has changed his prescribing practices because of the CDC guidelines.”

Human Rights Watch recommended last year that the CDC guideline be revised because too many doctors were using it as an excuse to abruptly cutoff or taper patients.

“Even when medical providers understood that the Guideline was voluntary, they believed they risked punishment or unwanted attention from law enforcement agencies or state medical boards if they maintained patients at high doses,” Human Rights Watch found.


How does this fear, engendered by political institutions like the CDC and DEA, not fall under the definition of terrorism? This is how Miriam-Webster defines terrorism: 

“The unlawful use or threat of violence especially against the state or the public as a politically motivated means of attack or coercion.”

Granted, the guidelines are not unlawful, but they have had the exact effect of being coercive on many in the medical community. I would also contend that the threat of being arrested and going to prison is a threat of violence.

The guidelines were engendered by the public outcry and governmental concern over the level of opioid overdoses and deaths. The CDC said the guidelines are voluntary, but to many doctors, pharmacies and insurance companies they are enshrined in stone as commandments. They were promulgated as a political response. They were not based on the medical model or the realities of patients in pain.

The point of terrorism is to instill fear. Terrorize one and others will fall in line. The guidelines have had exactly that effect. Accuse one doctor of overprescribing or running a pill mill – even if no charges are actually filed -- and other doctors will change their practices by reducing or refusing to prescribe opioids out of fear of being falsely accused, even when they know doing so will hurt their patients.

And how are patients hurt? Attorney Mark Rothstein, Director of the Institute for Bioethics at the University of Louisville School of Medicine, answers that question.

“Many physicians who previously prescribed opioids now have reduced or discontinued such prescriptions, even for established patients with chronic pain. In some cases, the change in policy was adopted literally overnight,” Rothstein wrote in the American Journal of Public Health.

“With no alternatives for pain control... and the physical and mental pressure of unremitting pain, many patients turned to illicit drugs, especially heroin. The result has been greater addiction, more deaths from overdoses, and an increase in cases of HIV/AIDS and hepatitis from contaminated syringes.”

It is long past time to end what has been interpreted as policy, a policy that hurts patients and the community. It’s time for the terrorism to stop.

Carol Levy250.jpg

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Doctors Urge CDC to Clarify Rx Opioid Guideline

(Editor’s Note: Five healthcare professionals recently began circulating an open letter to the CDC asking it to make a “bold clarification” of its controversial 2016 opioid guideline.

They believe many chronic pain patients have suffered under the guideline, because it has led to widespread tapering and discontinuation of opioids. They invited other healthcare professionals to co-sign the letter. To date, well over 200 have.

To see a list of signatories, click here. If you are a healthcare professional and also wish to sign the letter, click here.)  


Authors: Health Professionals for Patients in Pain

Any professional who cares for patients, including physicians, pharmacists, nurses, psychologists and social workers, is invited to sign on to this letter, as are any professional organizations that wish to endorse formally. 

I. In 2016, the Centers for Disease Control and Prevention, CDC, issued a Guideline for Prescribing Opioids for Chronic Pain for primary care physicians. Its laudable goals were to improve communication between clinicians and patients about the risks and benefits of opioid therapy for chronic pain, improve the safety and effectiveness of pain treatment, and reduce the risks associated with long-term opioid therapy. The Guideline reflected the work of appointed experts who achieved consensus on the matter of opioid use in chronic pain. 

Among its recommendations are that opioids should rarely be a first option for chronic pain, that clinicians must carefully weigh the risks and benefits of maintaining opioids in patients already on them, and that established or transferring patients should be offered the opportunity to re-evaluate their continued use at high dosages (i.e., > 90 MME, morphine milligram equivalents).  

In light of evidence that prescribed dose may pose risks for adverse patient events, clinicians and patients may choose to consider dose reductions, when they can be accomplished without adverse effect, and with possible benefit, according to some trial data.  

Nonetheless, it is imperative that healthcare professionals and administrators realize that the Guideline does not endorse mandated involuntary dose reduction or discontinuation, as data to support the efficacy and safety of this practice are lacking.  

II. Within a year of Guideline publication, there was evidence of widespread misapplication of some of the Guideline recommendations. Notably, many doctors and regulators incorrectly believed that the CDC established a threshold of 90 MME as a de facto daily dose limit. Soon, clinicians prescribing higher doses, pharmacists dispensing them, and patients taking them came under suspicion.  

Actions that followed included payer-imposed payment barriers, pharmacy chain demands for the medical chart, or explicit taper plans as a precondition for filling prescriptions, high-stakes metrics imposed by quality agencies, and legal or professional risks for physicians, often based on invocation of the CDC’s authority. Taken in combination, these actions have led many health care providers to perceive a significant category of vulnerable patients as institutional and professional liabilities to be contained or eliminated, rather than as people needing care.  

III. Adverse experiences for these patients are documented predominantly in anecdotal form, but they are concerning. Patients with chronic pain, who are stable and, arguably, benefiting from long-term opioids, face draconian and often rapid involuntary dose reductions. Often, alternative pain care options are not offered, not covered by insurers, or not accessible. Others are pushed to undergo addiction treatment or invasive procedures (such as spinal injections), regardless of whether clinically appropriate.  

Consequently, patients have endured not only unnecessary suffering, but some have turned to suicide or illicit substance use. Others have experienced preventable hospitalizations or medical deterioration in part because insurers, regulators and other parties have deployed the 90 MME threshold as a both a professional standard and a threshold for professional suspicion. Under such pressure, care decisions are not always based on the best interests of the patient. 

lV. Action is Required: The 2016 Guideline specifically states, “the CDC is committed to evaluating the guideline to identify the impact of the recommendations on clinician and patient outcomes, both intended and unintended, and revising the recommendations in future updates when warranted”. The CDC has a moral imperative to uphold its avowed goals and to protect patients.  

Therefore, we call upon the CDC to take action: 

1. We urge the CDC to follow through with its commitment to evaluate impact by consulting directly with a wide range of patients and caregivers, and by engaging epidemiologic experts to investigate reported suicides, increases in illicit opioid use and, to the extent possible, expressions of suicidal ideation following involuntary opioid taper or discontinuation. 

2. We urge the CDC to issue a bold clarification about the 2016 Guideline – what it says and what it does not say, particularly on the matters of opioid taper and discontinuation.  

Signatories here represent their own views, and do not purport to reflect formal positions of their employing agencies, governmental or otherwise.

For questions regarding the letter, please contact Stefan G. Kertesz, MD, Professor of Medicine at University of Alabama at Birmingham School of Medicine (skertesz@uabmc.edu).

The information in this letter should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The New Cruelty Rolls On

(Editor’s note: Rob Hale is a 52-year old Missouri man who lives with late-stage Ankylosing Spondylitis, a degenerative and incurable form of arthritis. We’ve written before about Rob and his difficulty in getting opioid pain medication – what he calls the “New Cruelty.”)

By Rob Hale, Guest Columnist

I’m here to talk about what happens when someone like me, who already is criminally undermedicated, gets seriously injured and must deal with the new procedures for treating chronic pain patients.

On August 16th of this year, I slipped and fell, breaking my neck.  I know, I know – bad idea. 

When I was brought into the hospital, they immediately hit me up with a dose of Narcan (naloxone), a drug used to reverse opioid overdoses. Narcan takes all the opiates out of your system in about 20 minutes, so you can feel every last iota of pain in your body. You also get to go through about a week’s worth of withdrawal pains in just under a half hour. Narcan is now standard operating procedure for any patient who comes into the ER with any form of opiate/opioid in his or her system. 

Anyway, back to the fun.  I was drifting in and out of consciousness due to the pain, while they took x-rays and CT scans of my neck. It turned out that I had a minor fracture, so they decided it was time to slit me from my skull to my mid back and put two, 12-inch titanium rods and 13 fittings and screws into my spine. 

I vaguely remember agreeing to this and putting my ‘X’ on some sheet of paper saying they could do it.  One thing I do remember clearly is I made damned sure that once the surgery was over and I was sent home, that I was going to get at least 6 and probably 12 days’ worth of pain medication.  I was assured of this not only by the neurosurgeon, but by all the interns and nurses who were attending me. 


I only spent 4 days in the ICU recovering from this nightmare of a surgery when they told me I was ready to go home!  I was shocked since they had just removed the wound drains that very day.  

But I really did want to get home and see my dog and my family, so I thought, “Okay, they must know what they’re doing, right?” 

I want you to guess what happens next, kids!

You guessed it – they were finishing up my discharge papers and I asked about my scripts.  They said that because I already had a pain management doctor, that is was up to him to provide me with the meds that I would need to recover from the surgery.  I explained, just as I had before the surgery, that my pain doctor was not going to be able to see me for several weeks, because his primary clinic is three hours away in Park City, Kansas and he is only in Kansas City one week out of the month.  Of course, I called him and begged for help, but to no avail. 

While I was recovering in the hospital, I was getting long-acting morphine 3x daily, plus immediate release oxycodone every 4 hours.  When I was released from the hospital, they gave me oxycodone to take every 6 hours, and no long acting morphine at all. 

Within 3 or 4 days, I lost the ability to use my right leg at all.  Having no other medication, nor any other recourse, I decided to use some of the methadone that I had left over from my last palliative care doctor. Unfortunately, it was about 10 years old.  But what was I to do?  It was that or hit the streets and try to get some illegal medication, which might have killed me since that crap is often loaded with illicit fentanyl. 

I was very careful to keep track of what I was taking, but I am guessing the methadone had gone bad, because I had a serious reaction to it and my dad called in the paramedics again. 

So, it was back to the hospital for me! Four days in ICU and 5 days in a semi-private room with a roommate who had pneumococcal pneumonia and a toilet that didn’t work, before I was  transferred to a nice, private room.  Only 2 days there, before they sent me over to a physical therapy facility across the street, where they tried to get my leg to work. 

All the doctors there were totally on board with the New Cruelty.  One actually told me that people who took more than 90 MME (morphine milligram equivalent) were at a much higher risk of death! It’s amazing to me how quickly they have disseminated this propaganda, and how completely the new generation of doctors have accepted it as the truth! 

This nonsense has gone on for years and I am becoming more and more despondent with this opioidphobic world. If you know me, you know that I live with chronic pain.  Not just any old pain, mind you – it’s really bad.  I have Ankylosing Spondylitis in its most advanced form, which more or less means that my spine, neck and sacroiliac are completely fused.  This has caused me daily intractable pain. I’m talking about pain that would drop the average person to his or her knees, praying to God to take their lives away just so the pain would stop. 

Adequate Care Phase

I am not attempting to elicit sympathy. It does nothing to ease the unending, merciless, wicked, 9 out of 10 pain that I live with day in and day out, 7 days a week, and 365 days a damned year. 

For many years, my pain was well controlled with morphine and hydromorphone. I was taking over 1,000 MME a day and never felt better in my life.  During this time, which I like to call my “adequate care phase,” which lasted almost 12 years, I never misused my medications and even went so far as to keep a journal listing every single pill that I took. My palliative care doctor can back me up on this. He was very surprised yet pleased to see how carefully I was using these drugs and how much respect I had for them.  I knew they were potentially deadly and dangerous, but while I was taking them – exactly as prescribed – I was every bit as lucid and well-spoken as I am right now. 

You see, when you have extreme amounts of pain, opioids go straight to the pain – they do NOT cause any type of high or euphoria.  I was able to participate in family functions, help around the house and assist my aging parents -- in short, to live a semi-normal, quasi-productive life.  I even opened my own little guitar shop out of my house, to make a little money to supplement my rather meager social security disability income. 

Then came the New Cruelty, in the form of a supposedly voluntary set of opioid guidelines from the CDC — or as I like to call them, the medical Gestapo.  According to the CDC, I was at high risk of overdose for over a decade because I was taking over 90 MME.

We are now at the mercy of a medical industrial complex that – in collusion with insurance companies and psycho-sociopaths in Congress – have created a fear-based campaign that they have dubbed the “opioid epidemic’ or “opiate crisis.” I firmly believe that chronic pain patients are being targeted for death by this campaign, either by our own hands or by medical complications that result from being woefully undermedicated. 


Rob Hale lives in Kansas City, MO. He was diagnosed with Ankylosing Spondylitis at the age of 27.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Help Us Get Our Lives Back

By Andrea Giles, Guest Columnist

I am a 49-year old disabled nurse living in Wyoming. Since 2010, I have been diagnosed with ankylosing spondylitis, phantom limb pain and severe osteoarthritis with multiple major joint deformities.  My remaining knee is now bone on bone, requiring me to use a wheelchair. 

I lost my right leg and half of my pelvis after a total hip replacement due to the osteoarthritis, after which I developed a severe MRSA bacterial infection that resulted in the total hip disarticulation. I’ve had horrible phantom limb pain since the amputation. I also had 2 failed spinal fusions, leaving me with chronic back pain and nerve damage. Since 2010, I have had a total of 52 surgeries.


From 2010 to 2016, I was treated with opioid medication by a pain management physician, with a stable, safe, effective and legal regimen. I followed all of the requirements, such as urine drug tests, pill counts, using the same pharmacy, etc.

Then, at an appointment in 2016, my physician told me that because of the CDC guidelines, he would no longer prescribe opioid medication to me. I was forced off my high dose (120MME) cold turkey. I was lucky, as I didn’t experience withdrawal symptoms other than the reappearance of severe, intractable pain.

I tried to use NSAIDS for the pain and developed a severe, life threatening reaction to them called Stevens-Johnson Syndrome. I came very close to death and was in intensive care for 6 weeks. Because of that, I will be unable to take NSAIDs for the rest of my life.

Because of the MRSA infection, no physician will perform any further surgeries or steroid injections on me because of the risk of activating another infection.

I have tried acupuncture, massage, chiropractic therapy, mirror therapy, physical therapy, water therapy, many different herbal and nutritional supplements, aromatherapy, music therapy, psychotherapy, hypnotherapy and mindfulness. All without relief of the severe, intractable pain.

When I was forced off opioids, I also lost my career as a very good ER nurse. I went from a functional member of society to a home-bound, miserable person who hurts too badly to keep my house clean like I always prided myself on. Many days I’m in too much pain to even shower or complete daily activities of living.

My husband and children have lost the wife and mother they were able to interact with, go places with, share activities with, everything. I have gained 50 pounds because the pain has left me unable to exercise.

After I stopped taking opioids, I developed hypertension.  Before, my blood pressure had never been higher than 130/80. Now I take medication for high blood pressure and it is still usually around 150/90.

I also developed heart arrhythmia and last year suffered 2 sudden cardiac arrests. I only survived because both times they were witnessed by my husband, who is also an ER nurse, so he immediately started CPR. The cardiologist could find no underlying causes and told me that the arrhythmia and cardiac arrests were probably due to longstanding, untreated severe pain.

There is no physician that I can find that will accept me as a chronic pain patient and my primary care doctor refuses to prescribe opioids anymore. I have literally tried every pain management physician in Wyoming and in Montana, which would have required a 6 to 7-hour drive for each appointment.

I, along with many other intractable pain patients, are working feverishly contacting our congressional representatives, federal government and civil rights groups, begging for help -- for anyone in a position of power to hear our cries of medical abandonment and neglect.

Our pleas mostly fall on deaf ears, as the government has convinced the media and the public that pain patients are all addicts and use opioids only to get high. They site false overdose statistics and refuse to acknowledge that while opioid prescriptions have declined -- causing devastating effects on the pain community -- the overdose rate continues to climb because the clear majority of overdoses are due to heroin, illicit fentanyl or polypharmacy with multiple drugs.

Many intractable pain patients are committing suicide because untreated pain takes away their quality of life and the will to live – something they had with legally prescribed and effective doses of opioid medication.

We are desperate. We don’t want to get high. We just want to make informed decisions with our physicians about our own healthcare, to regain access to opioid medication, and to get our lives back!


Andrea Giles lives in Wyoming with her family.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Former CDC Director Arrested for Sexual Misconduct

By Pat Anson, Editor

Dr. Thomas Frieden, the former director of the Centers for Disease Control of Prevention, has been arrested on sexual misconduct charges in New York City.

Frieden turned himself in to police in Brooklyn Friday morning after being charged with forcible touching, harassment and third degree sex abuse, all misdemeanors. The charges stem from a complaint filed in July by a 55-year old unnamed woman who alleges the 57-year old doctor grabbed her buttocks without permission in his apartment last October. 

According to STAT, Frieden later apologized to the woman -- a longtime family friend -- and "tried to manipulate her into staying silent by citing his position and potential to save lives around the world."

Fried was arraigned Friday afternoon and released without bail, after a judge ordered him not to contact his accuser and to surrender his passport. He's due back in court October 11.

Frieden did not enter a plea. A spokesperson released a statement saying the incident "does not reflect Dr. Frieden’s public or private behavior or his values over a lifetime of service to improve health around the world.”

Frieden led the CDC from 2009 to 2017 and championed the agency’s controversial opioid prescribing guideline -- calling it an "excellent starting point" to prevent opioid abuse.

Although voluntary and only intended for primary care physicians, the guideline has been widely adopted by insurers, states and healthcare providers – resulting in many chronic pain patients losing access to opioid medication.

“This crisis was caused, in large part, by decades of prescribing too many opioids for too many conditions where they provide minimal benefit," Frieden wrote in a commentary published by Fox News.  “There are safer drugs and treatment approaches that can control pain as well or better than opioids for the vast majority of patients."



Frieden currently heads Resolve to Save Lives, a program of Vital Strategies, a non-profit health organization that is trying to improve public health worldwide.

Vital Strategies released a statement saying Frieden informed the organization in April about the misconduct allegation. His accuser does not work for Vital Strategies, but the organization hired an investigator to interview employees about Frieden. No inappropriate workplace behavior or harassment was found, according to Vital Strategies CEO Jose Castro.  

“I have known and worked closely with Dr. Frieden for nearly 30 years and have seen first-hand that he has the highest ethical standards both personally and professionally. Vital Strategies greatly values the work Dr. Frieden does to advance public health and he has my full confidence,” said Castro.

Frieden has an extensive background in epidemiology and infectious diseases, and his tenure at the CDC was marked by major efforts to combat the Ebola virus, fungal meningitis, influenza and the Zika virus.

Before his appointment as CDC director, Frieden was New York City’s health commissioner, where he led efforts to ban public smoking and remove unhealthy trans fats from restaurants. Frieden is married and has two children.

Living with a Beast

By Cathy Kean, Guest Columnist

I am living with a beast who is cold, heartless, unmerciful, uncaring and cruel. Always lurking around me, making my life so challenging, so exhausting, and so painful. Not only physically, but mentally, spiritually and emotionally.  

This beast has taken so much from me, I hardly remember how it was before it came into my life. Of course, I had challenges and difficult times. But I was functional and happy. And I could cope! I could manage! 

Now I have had to deal with this evil and vindictive beast.  I live day in and day out in my cave (my bedroom), lying in bed. I rarely venture out anymore.  I've become isolated and alone; so different from the life I used to live. 

I wish that I had swallowed and drunk up and absorbed the greatness and beauty of the life I had before, and not taken it for granted. What I wouldn't do or give to go back to that time! 

I mourn me. I miss me. I know my kids and my grandchildren miss me. The woman I used to be was energetic, vivacious, outgoing, industrious, loving and friendly. There wasn't a person that could walk by me without me engaging in some kind of banter.  I loved life so much more then!

Now I am attacked when I least expect it. I have no way of knowing how or when, because the beast is always present, always lurking around. It has hurt my family, my career, my outlook and my sense of self. I am followed everywhere.

When the beast is angry, my days are hell and my nights sleepless. It is behind me, beside me, everywhere, every day.  I truly cannot remember a time that I lived totally out of its grasp.

This fiend’s name is PAIN.


Pain is brutal, savage and barbaric at times. Pain cares little for family occasions, social events or holidays. Pain forces me to stay home, ensuring I don’t forget its brute presence for a second. The beast has been a silent witness to some of the most extraordinary and excruciatingly painful moments of my life.

There are so many who live with this insidious beast, just like I do. We do our best to keep on living, despite pain's germinating presence. You never become immune to the torturous, aching, stabbing, aching and suffering that pain brings, regardless of how long you live with it.

I am trying to learn that this is my new normal and I must continue with my life. I try to smile, laugh and engage, despite the struggle, strain and toil it causes. But I feel like I have been robbed!

I need to tell those who do not have chronic pain a little secret.

It hurts all day, every day, 24/7.

365 days a year.

It never stops.

It never ends.

You eat, it hurts.

You sleep, it hurts.

You just exist, it hurts.

You rest, it hurts.

You breathe, it hurts.

Every single aspect of every single day, it hurts.

And now without my essential tools (my medications) that gave me functionality, my quality of life has diminished 98% due to CDC guidelines. I truly don't know how much longer I can stay in this fight, this madness, this torment and this torture.

Constant and chronic pain isn’t something you can deal with for a long period of time. My organs are starting to shut down. I am blacking out constantly. I am having cardiac issues. I am in so much pain, I pray to God to take me!

I have begged my adult children to please not be angry with me if I take my life. I want to be here! I want to see my grandbabies grow up. I want to engage in life again!

I made a difference in peoples’ lives. I used to be a parent's last hope for true help and success when I had access to my medications. I was a special education advocate and I was good! I knew those feelings of desperation, not knowing where to turn or what to do for your child.

I just wish the government, our families, friends, and society would see us as human beings with value. Please be more compassionate, more loving and more accepting of our limitations.

No one would ask or want to live with this beast, this madness! I promise you!


Cathy Kean lives in California. She is a grandmother of 7 and mother of 4, who has chronic pain from lupus, fibromyalgia, Parkinson's disease, and stiff person syndrome. Cathy is a proud member of the Facebook group Chronic Illness Awareness and Advocacy Coalition.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Pain Patients Urge FDA to Fix CDC Guideline

By Pat Anson, Editor

Chronic pain patients are losing access to opioid medication, can’t find doctors willing to treat them, and are often treated as addicts, pain sufferers told FDA officials during an emotional public hearing Monday.

The Food and Drug Administration called the meeting to hear from pain patients about “challenges or barriers” they face in accessing treatment. Much of the testimony focused on the Centers for Disease Control and Prevention's 2016 prescribing guideline, which discourages opioids from being prescribed for chronic pain and has been widely adopted throughout the U.S. healthcare system.

“FDA, we are begging you. Correct the CDC’s egregious mistakes. Tell the country the truth about prescription opioids. They are safe and effective for 99% of us,” said Rose Bigham, who lives with chronic pain caused by Ankylosing Spondylitis, fibromyalgia and Crohn’s disease. “My new worst nightmare is being admitted to the hospital, being in agony and being denied pain relief.”

“CDC Guidelines have been a disaster for pain patients,” Rick Martin, a pharmacist disabled by chronic back pain, said in prepared testimony. “There is plenty of anecdotal evidence showing involuntary (opioid) tapering is rampant across the U.S.  Many, many stories of patients who are inhumanely suffering, some with suicidal ideation.

“The FDA needs to take action.  The FDA says it wants to know about challenges or barriers to accessing treatment. The challenge and the barrier is the CDC guideline. It should be immediately suspended.  It should be reviewed and modified with pain management physicians and patient input.”

“It seems to me we are asking for our right to have a normal life. I don’t feel like we should have to beg others for our right to live. It is not by another person’s hand to dictate how my life goes,” another pain sufferer said.

Dozens of pain patients and advocates attended the day-long hearing in Silver Springs, MD, including many who came from out-of-state at their own expense. Some fought back tears as they testified. Hundreds more watched the meeting online.

Many patients said they had tried non-opioid medications or alternative pain therapies, and found them ineffective or had side effects. One woman who took the FDA-approved medication Lyrica said it made her suicidal.

FDA hearing.png

“I am a three-time suicide survivor because of medications you guys approve... and I have actually given up on FDA approved medications. I only take herbs in raw forms. Every one of those drugs that you approved for me to take led me to almost die,” said Kelly Devine. “Stop controlling everything any person wants to use to treat whatever form of whatever disease they are dealing with. Let people have the choice of what we put in our body."

“I don’t know if you are aware, but pain patients are being extorted into having dangerous invasive procedures," another patient warned. "It’s happening all over the country. Pain doctors are saying, ‘You want your meds, you have to go have an ESI (epidural steroid injection).’ Extorting patients into having procedures just to get meds is not right.”

‘Too Many Prescriptions for Opioids’

The FDA’s public hearing was a hopeful sign that at least one federal agency is starting to listen to patients about the worsening quality of pain care in the U.S. 

President Trump’s opioid commission held five public hearings in 2017 without ever inviting a pain patient to testify.  The CDC also ignored the pain community when it secretly drafted its opioid guideline, relying instead on the advice of addiction treatment specialists, anti-opioid activists and academics. And the DEA ignored warnings from patients that further cuts in opioid production quotas could lead to shortages of pain medication, which are now occuring at many hospitals.

Will the FDA seek changes in the CDC guideline? The early indications are not promising.

“Unfortunately, the fact remains that there are still too many prescriptions being written for opioids,” FDA commissioner Scott Gottlieb, MD, said in a lengthy statement apparently written before the hearing began.  “We don’t want to perpetuate practices that led to the misuse of these drugs, and the addiction crisis. At the same time, we don’t want to act in ways that are poorly targeted, and end up disadvantaging legitimate patients.”

Gottlieb said the FDA was encouraging medical professional societies to develop their own opioid guidelines for different medical conditions. But he stopped short of calling for changes in the CDC guideline itself, saying it provides "helpful guidance to prescribers.”

“The CDC guidelines reinforce the need to treat pain carefully and adopt opioids as a last resort medication for most conditions,” said Gottlieb, who did not attend the hearing but will be briefed on it, according to FDA staff.