A Survival Guide for Opioid Withdrawal

By Crystal Lindell, PNN Columnist

Maybe your doctor cut off from your medications. Maybe you had a pain flare and ran out of pills a week before your next scheduled refill. Maybe you just don’t want to deal with opioids anymore because they’re harder to get than Beyonce tickets.

Whatever your reason for going off opioids, it’s likely you’ll have to deal with physical withdrawal — especially if you’ve been taking them for a while. But there are ways to minimize the symptoms.

I also would be remiss if I didn’t mention that my boyfriend, Chris — who also has chronic pain and gone through opioid withdrawal more than once — helped me compile and write this list.

So from two people who’ve gone through it more than a few times, here is our opioid withdrawal survival guide:

1. Talk to a doctor first

If you have access to a doctor, and you feel comfortable doing so, talk to her about it. I’m not a doctor, I’m just a patient, so please keep that in mind with everything else I say.

2. Be aware of what the symptoms are

Know thy enemy, as they say. There are a lot of symptoms caused by opioid withdrawal that you may not be expecting — especially if your only reference point is pop culture. I like to say that opioids sort of shut down your systems, and withdrawal turns everything back on at full volume.

You’ll probably experience some or all the following, and they’ll likely start kicking in within about 24-48 hours.

• Diarrhea

• Nausea and vomiting

• Sneezing and runny nose

• Anxiety and panic attacks

• Fatigue (Your natural instinct may be to reach for caffeine or other stimulants, but be careful. They likely will just make your anxiety worse and it won’t touch your fatigue)

• Insomnia

• Sweating

• Yawning and watery eyes

• Restless legs (Your legs move on their own while you’re sitting or lying down. I know, I thought it was fake too, but it is very real and difficult to deal with).

• Muscle aches

• Goosebumps

• Dilated pupils

• Hyper-libido and increased sex drive (Remember, opioids turned off everything and withdrawal turns it back on)

• Increased fertility (Being on opioids can make it difficult to get pregnant and withdrawal will have the opposite effect. If you want to avoid pregnancy, make sure to use birth control)

• Thrill-seeking behavior and mood swings (As the ups of your day give way to the lows, you may find yourself seeking out risky behavior as a way to improve your mood and receive the adrenaline that you so desperately crave).

3. Suicidal thoughts

I wanted to pull this one out separately from the other symptoms because it’s potentially so dangerous.

There are a lot of news reports about opioid users who kill themselves after they get clean. Reporters often frame it as though the person got off opioids, took a look around and decided that what’s left of their life just wasn’t worth living. That’s not usually the case though. Withdrawal itself will make you suicidal.

The good news? Knowing it’s being caused by withdrawal and not by crappy life circumstances may make it easier to push through it.

The best way to combat this symptom is to know it might happen and have a plan in place to deal with it if does. I once went seven days without any opioids when I had a full-on, hours long anxiety attack and planned to kill myself. I eventually gave in and took just one small hydrocodone, and within an hour my mind and spirit had calmed.

Which brings me to my next piece of advice.

4. Taper, Taper, Taper

Popular culture has perpetuated the idea that quitting opioids is all about will power. That’s a bunch of B.S.

Most relapses occur because people don’t properly taper their dose. Regardless of why you take opioids, your body has likely gotten accustomed to having them, just like it would have gotten used to a heart medication.

The best and safest way to successfully get unaccustomed to opioids is to taper off them as slowly as possible.

What does that look like? Well, if you take five pills a day, go to four for a couple weeks (yes, weeks), then three, then two, then one, and then even half. I personally noticed a lot of symptoms even going from one pill a day to zero — so if you can split a pill in half, do that.

If you are using drugs illegally, tapering might look a little different. One thing you can do to taper is switch to a weaker drug. Another important step would be changing how you take it. So if you’re snorting it, switch to taking it orally as part of the tapering process. If you’re injecting, try taking it in any other fashion that will allow you to bridge the gap.

5. Consider using kratom

Of course, tapering only works if you still have access to pills or drugs. If you don’t — there’s still help available. Kratom is your new best friend. It will drastically reduce your withdrawal symptoms.

Personally, I think kratom is also a good long-term solution for chronic pain and is a lot milder than pharmaceutical-grade opioids. Assuming it’s legal in your state, kratom is much easier to get than opioids and does not require a prescription. You can get kratom online, at most smoke shops, and even some gas stations.

For the record, the FDA has not approved kratom for any medical condition — including addiction treatment. And some researchers say kratom is a public health threat because it is unregulated.

6. Consider using marijuana

If you can’t get kratom for whatever reason, marijuana will also help you taper down. Edibles in particular will help with insomnia, anxiety, muscle aches, and restless legs.

But beware, if you haven’t taken edibles before, even a very small dose may knock you out for a few hours.

7. OTC medications

There are some over-the-counter medications that will help reduce symptoms:

• Imodium (to help with diarrhea and nausea)

• Benadryl (to help with the sneezing and insomnia)

• Tylenol (to help with aches and pains)

• B1, B12, multivitamins and potassium (to help replenish what your body loses from the sweating and diarrhea, which is a huge step toward feeling better)

8. Avoid alcohol

You may be tempted to reach for a glass of wine or a shot of vodka to ease your symptoms — but trust me, they will just come roaring back even stronger after it quickly wears off. Try all other options before you resort to a stiff drink.

9. Consider Suboxone and methadone

Depending on what you were taking and for how long, you may not be able to get through withdrawal without medication assistance treatment.

Suboxone (buprenorphine) and methadone are two opioid medications that can help you through withdrawal, and they are medically proven to be effective. You’ll have to get both from a doctor, and they may not be covered by insurance. But they may also be your best shot at getting off opioids long-term.

10. Don’t go back to your old dose

You start off strong. You tell yourself you’ll never take even one more hydrocodone again. But seven days later, the hell of withdrawal has finally beaten you down enough that you decide it’s just not worth it.

It’s okay. It happens. It doesn’t mean you’re a bad person.

BUT DO NOT TAKE YOUR OLD DOSE!

I can’t be clear enough about this. In just one short week, your body’s tolerance levels have already shifted. And your old dose is going to hit you like a freight train. It may even be strong enough to kill you.

Sadly, this is how a lot of opioid users die. They assume their bodies can handle the same fentanyl patch they were using just a short seven days ago, and it’s suddenly way too strong. This can also happen when someone goes through a formal rehab program, gets out and goes right back to their old dose. It’s enough to stop their breathing.

You may have heard of this phenomenon when it comes to celebrity deaths, like Cory Monteith from Glee. As it explains on Monteith’s Wikipedia page: “After a period of cessation from opioid drug use, a previously tolerated drug concentration level may become toxic and fatal.”

In other words, he was just clean enough for the opioids to kill him.

Even if you’re used to a small dose, like 60mg of hydrocodone a day, once you’ve gone through a couple days of withdrawal, those 60mg are going to hit you incredibly hard.

11. Have Narcan on hand

Along those same lines, I highly recommend you have Narcan (naloxone) on hand just in case, as it can reverse the symptoms of an overdose and potentially save your life. In many states you can even it get it over-the-counter, without a prescription.

Narcan is one of those things you think you’ll never need until you need it. I keep a dose in my house because I regularly take prescription opioids and I want to be as safe as possible. Even if you don’t personally need it, you never know if a child or someone else might find your medications. And you’ll want to have it on hand if that happens.

12. Remember it’s a marathon

In the movies, withdrawal is like three days and then you’re healed. Even though most of the physical symptoms will be gone in about a week, you can still have withdrawal symptoms for up to two years.

It’s called Post-Acute Withdrawal Syndrome (PAWS) and it can include things like panic attacks, insomnia, restless legs, anxiety, risk taking behavior and suicidal thoughts.

13. Get help from family and friends

It’s so important to have a least a couple friends or family members around to help you through it. My best friend and my boyfriend are my go-to because I know they won’t judge me and they’ll be supportive.

If you have the option to be around another person as much as possible, definitely do that. They can help take your mind off the physical symptoms and help you cope with the long-term psychological ones you may experience. Anxiety is a lot easier to deal with when you’re hanging out with your best friend.

14. Find a therapist you trust

If you were getting opioids with a legitimate prescription from a legitimate doctor, you may not think you need long-term addiction treatment. But you still have a medical condition that warranted a long-term opioid prescription. That means you probably would benefit from having a therapist to talk to about how you’re coping with all of that.

Your doctor may be able to refer you to someone, and Psychology Today also has a decent directory. These days, you can even do it all online, with sites like Better Help, which offers access to counselors via phone and text.

I also personally found a low-dose SSRI helpful for dealing with the long-term anxiety and panic attacks, so you may want to talk to your doctor about an antidepressant or anti-anxiety medication.

15. Don’t be too hard on yourself

You’re doing better than you think you’re doing, I promise.

And we’re all rooting for you. You’ve got this.

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. Crystal has hypermobile Ehlers-Danlos syndrome. 

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

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.

WHO Criticized for Withdrawing Opioid Guidelines

By Pat Anson, PNN Editor

A coalition of international palliative care organizations is protesting a decision by the World Health Organization (WHO) to withdraw two guidelines for treating pain with opioid pain medication.

“We are extremely concerned that the withdrawal of these guidance documents will lead to confusion and possible extreme measures that will hinder access to patients with legitimate medical needs,” the coalition said in a joint statement released this week.

The guidelines were withdrawn after two U.S. congressmen released a report that accused WHO of being “corruptly influenced” by Purdue Pharma and other opioid manufactures when it developed the guidelines in 2011 and 2012. The guidelines for treating pain in adults and children state that opioids “are known to be safe and there is no need to fear accidental death or dependence.”

Reps. Katherine Clark (D-MA) and Hal Rogers (R-KY) said the WHO guidelines served as “marketing materials” for Purdue, the maker of OxyContin.

“We are highly troubled that, after igniting the opioid epidemic that cost the United States 50,000 lives in 2017 alone… Purdue is deliberately using the same playbook on an international scale,” the report said. “If the recommendations in these WHO guidelines are followed, there is significant risk of sparking a worldwide public health crisis.”

WHO withdrew the guidelines a month after the report was released, citing “new scientific evidence” that emerged since their publication.

WHO’s decision to withdraw the guidelines gave credibility to a congressional report based largely on innuendo, according to the statement released by over a hundred palliative care organizations, including the American Academy of Hospice and Palliative Medicine and the UK-based International Observatory on End of Life Care.

“The report contains serious factual inaccuracies and draws inaccurate and unfair conclusions. It includes misleading information, and by making false accusations of existing collaborations and alliances to advance pain relief and palliative care, concludes that there was corruption within WHO,” the coalition said. “No staff member of the offices of the U.S. representatives contacted any of the organizations or individuals mentioned in the document to seek our responses to the allegations made in the report.”

According to the coalition, the withdrawal of the guidelines could further impede the availability of pain medication in third world countries, where less than 2% of palliative care patients have access to opioids.

“Under-treatment of severe pain is reported in more than 150 countries,” the coalition said. “At least 5 billion people live in countries affected by the crisis of under-consumption, and more than 18 million annually die with untreated, excruciating pain.”

The coalition cited the case of a cancer patient in New Delhi, India, who wanted to die until she was able to obtain opioids through a CanSupport palliative care program.  

“I am a functioning human being in charge of my life once again. This has been made possible thanks to the oral morphine that I now take.”

— Cancer patient in New Delhi, India

“I was a human wreck. My family was at their wits end as to how to help me. Because of my excruciating pain, I could not sit, sleep, eat or drink, let alone speak or think. When the team first met me my first request to them was for an injection that would put me out of my misery,” the patient said.

“Today, I am a functioning human being in charge of my life once again. This has been made possible thanks to the oral morphine that I now take on a regular basis.”

The palliative care coalition said it was unfair to deny opioids to patients in third world countries because of abuse and addiction problems in the U.S. and other developed nations.  The coalition called on WHO to update and revise the guidelines “with all deliberate speed” and to reinstate them until the revisions are made.

‘Trapped in a Bottle’ Billboard Misses the Mark

By Dr. Lynn Webster, PNN Columnist

The mission of The Partnership for a Drug-Free New Jersey (PDFNJ) is to reduce substance use and misuse in New Jersey. The non-profit has received more than 200 advertising and public relations awards for its public service campaigns.

Much of the organization’s work is laudable, but their new "Trapped in a Bottle" campaign spreads misleading and harmful information about opioid medication.

Digital billboards of a man or woman trapped in a prescription bottle appeared in Times Square and on mass transit. The billboards end with a warning: “In just 5 days, opioid dependency can begin.”

Physical Dependence vs. Addiction

The ad talks about dependency, but it conflates dependency with addiction.

Physical dependence is a process that starts with exposure to the first pill. Discontinuance of an opioid may lead to withdrawal — but the hyperbolic ad can easily be mistaken to be about addiction rather than dependency.

Dependency is a normal neuroadaptation that takes place when certain brain receptors are exposed to drugs, including opioids. These drugs change the structure and function of a receptor with continual exposure, and that can result in physical dependence. If the drugs are abruptly stopped, that can cause withdrawal.

Using opioid medication for as little as five days will almost never induce withdrawal. And even if withdrawal occurs after taking a short course of opioids, it does not mean the person is addicted or has an opioid-use disorder.

The "5 days" concept is meaningless because it spreads unhelpful myths about opioids. I have prescribed opioids to thousands of patients and have never seen a patient experience withdrawal when stopping within a week or even two. Managed properly, the overwhelming majority of patients experience no negative effects from dependency.

Addiction, on the other hand, requires much more than simply ingesting a pill, and it does not occur in any specific number of days. The development of this disease is a process that involves multiple factors and occurs over time.

It is important to remember that addiction is not resident in the drug, but rather in human biology. Exposure to an opioid is a necessary, but by itself is insufficient to cause the disease.

For people who develop an addiction, opioids provide a reward, and the brain seeks to repeat the pleasurable experience. For a vulnerable person, one pill can be so rewarding that it drives pleasure-seeking behavior that can lead to addiction. But that does not happen in five days or on any other timetable.

This is not the first time PDFNJ has created over-the-top digital billboards to scare people away from using prescription opioids.

A 2016 billboard intended to frighten parents asked: "Would you give your child HEROIN to remove a wisdom tooth?"

This melodramatic question was followed with: “Ask your dentist how prescription drugs can lead to heroin abuse." The innuendo is neither educational nor informative.

It's understandable that an advertising agency would have trouble accurately conveying the problems of drug dependence and addiction when the news media also has difficulty communicating the facts.

Inaccurate Portrayal of the Opioid Crisis

In a recent WPIX article describing the “Trapped in a Bottle” campaign, Mary Murphy wrote that “drug overdoses killed more than 72,000 people in the United States in 2017, a new record driven by the deadly opioid crisis.”

Murphy used the statistic to help illustrate the harm of prescription opioids. But prescription opioids were involved in less than 20,000 of those drug deaths. If Murphy wanted to use a large number, she should have said there were 150,000 deaths from substance abuse in 2018. This would include alcohol-related deaths. Of course, alcohol delivers its poison in a bottle, too.

Murphy writes that a large percentage of drug overdoses can be attributed to heroin or fentanyl. Indeed, these are major sources of opioid deaths, but she fails to point out that neither heroin or illicit fentanyl are prescription opioids. Nor are they commonly found in a bottle. Again, her implication is that prescription opioids are at the heart of this crisis.

Concepts Video Productions, which is based in Towaco, New Jersey, produced the digital billboard. “Each year, we select a pro-bono project that will impact the world,” said Collette Liantonio, creative director of the production company.

The “Trapped in a Bottle” billboard, however, may do nothing for the world besides demonstrate how imperfectly most people understand the reason for the drug crisis and reinforce prevalent myths about it.

Perhaps Concepts Video Productions should consider creating a billboard that shows someone who is unable to find a job that pays a decent wage, and seeks to escape poverty and hopelessness with drugs. Economic and social woes, rather than prescription drugs, are at the core of our country's drug crisis.

Or perhaps Concepts Video Productions should create a giant digital billboard full of people with chronic pain who can’t get out of bed because their doctors refuse to prescribe the medication they need.

Using fear to solve the drug crisis will never be successful.

Moreover, knowing a drug's potential to lead to physical dependence or addiction will not prevent anyone from seeking a psychological experience to escape painful life experiences. The answer is to address the emotional and physical needs that create dependency or addiction in the first place.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. Lynn is a former president of the American Academy of Pain Medicine, author of the award-winning book “The Painful Truth” and co-producer of the documentary “It Hurts Until You Die.”

You can find him on Twitter: @LynnRWebsterMD.

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.

Study: 40% of Primary Care Clinics Refuse to See Pain Patients

By Pat Anson, PNN Editor

Many chronic pain patients know firsthand how difficult it can be to find a new doctor. In PNN’s recent survey of nearly 6,000 patients, almost three out of four (72%) said it is harder to find a doctor willing to treat their chronic pain.

“Two doctors refused to see me. I have no quality of life and I'm confined to bed. No one will help me,” one patient told us.

“It's to the point mentioning you need pain relief makes health care professionals look at you as an addict. Hell, when I have tried to get help for my pain and told the doctor I don't want opioids, I still get a suspicious look,” another patient said.

Over a third of patients (34%) in our survey said they’ve been abandoned by doctors and 15 percent said they haven’t been able to find a doctor at all.

A novel study by researchers at the University of Michigan confirms many of our findings. Using a "secret shopper" method, researchers posing as the adult children of patients taking the opioid Percocet called primary care clinics in Michigan to see if they could schedule an appointment for their parent. The callers also said their "parent" was taking medications for high blood pressure and high cholesterol.

79 of the 194 clinics that were called – about 40 percent -- said they would not accept a new patient who was taking opioids, no matter what kind of health insurance they had.

Less than half of the clinics (41%) were willing to schedule an initial appointment and 17 percent said they needed more information before making a decision.

"We were hearing about patients with chronic pain becoming 'pain refugees', being abruptly tapered from their opioids or having their current physician stop refilling their prescription, leaving them to search for pain relief elsewhere," said lead researcher Pooja Lagisetty, MD, who published her findings in JAMA Network Open.

"However, there have been no studies to quantify the extent of the problem. These findings are concerning because it demonstrates just how difficult it may be for a patient with chronic pain searching for a primary care physician."

Lagisetty and her team did find that larger clinics and community health centers were more likely to accept new patients taking opioids, perhaps because they have more resources available to treat such patients.

Still, the overall findings are concerning because they mean many patients who need medical care -- not just for pain but for high blood pressure, diabetes and other common conditions -- are being turned away because of the stigma associated with opioids.

Without access to medical care, researchers say patients may turn to other means of obtaining opioids or to illicit substances. 

“Our results suggest that there are significant barriers in accessing primary care for patients taking opioids for chronic pain.”

— Pooja Lagisetty, MD, University of Michigan

“These findings may also reflect practitioners' discomfort with managing opioid therapy for chronic pain or treating patients with OUD (opioid use disorder) as a result of pressures to decrease overall opioid prescribing,” researchers found. “In addition, the findings may reflect frontline staff bias against what may be perceived as drug-seeking behavior and may not actually indicate prescriber decision-making or clinic-level policies.

“However, regardless of the reason for denial, our results suggest that there are significant barriers in accessing primary care for patients taking opioids for chronic pain.”

Lagisetty said the 2016 CDC opioid guideline – widely blamed by many patients for restricting access to opioid medication – is only part of the problem.

"States, including Michigan, have implemented many other policies that are only occasionally based on the guidelines, in an effort to restrict opioid prescribing," she said. "We hope to use this information to identify a way for us to fix the policies to have a more patient-centered approach to pain management.

"Everyone deserves equitable access to health care, irrespective of their medical conditions or what medications they may be taking."

Canadian Doctors Prescribe Opioids to Keep Patients Off Street Drugs

By Pat Anson, PNN Editor

So-called “safe injection sites” – supervised clinics where intravenous drug users can inject themselves -- remain controversial in the U.S. Efforts to establish such sites in San Francisco and Philadelphia are mired in political and legal opposition.

But supervised injection sites are already operating in several Canadian cities, where they are seen as an important resource in reducing the risk of overdose and getting drug users into treatment.

Some Canadian doctors, however, believe the injection sites leave out a key population – illicit drug users who don’t normally inject drugs. Rather than run the risk of those patients turning to risky street drugs, they are prescribing opioid medication to them.

“We have to be willing to step outside of our comfort zone and out of the medical establishment comfort zone and say that we need to keep people alive,” Dr. Andrea Sereda, a family physician at the London Intercommunity Health Centre in Ontario told Global News.

Sereda is prescribing hydromorphone tablets to about 100 patients, most of whom were homeless and using street drugs. So far there have been no fatal overdoses, half the patients have found housing, and they have regular contact with healthcare providers.

“It’s not just a prescription for pills, but it’s a relationship between myself and the patient and a commitment to make things better,” Sereda said. “That involves me taking a risk and giving them a prescription, but it also involves the patient committing to doing things that I recommend about their health and us working together.”

Sereda says her “safer supply” program is only intended for patients who have failed at addiction treatment programs where methadone or Suboxone are usually prescribed.

A similar pilot program recently began at a Vancouver clinic, where hydromorphone tablets are given to about 50 patients, who ingest them on site under staff supervision. At another clinic in Toronto, hydromorphone is prescribed to 10 patients who would normally rely on the black market, where drugs are often tainted with illicit fentanyl or its lethal chemical cousin, carfentanil.

“I’ve had people who, literally, their urine is just all carfentanil,” Dr. Nanky Rai, a physician at Parkdale Queen West Community Health Centre told Global News. “That’s really what terrified me into action.”

Other physicians are warming up to the idea. Last week over 400 healthcare providers and researchers sent an open letter to Ontario Premier Doug Ford asking that high dose injectable hydromorphone be made widely available to illicit drug users.

“We could rapidly implement hydromorphone prescribing,” Jessica Hales, a Toronto nurse practitioner, said in a statement. “Clients want this. Prescribers are eager to deliver it. But it is not covered under the Ontario Public Drug Plan, which is how almost all of my clients access prescription drugs.”

What About Pain Patients?

But patient advocates say the safe supply movement should be expanded to include pain patients who have lost access to opioid medication or had their doses drastically reduced.

“The Chronic Pain Association of Canada fully endorses the safe supply initiative, but asks why we’re helping one group while hurting the other, pointlessly. Safe supply is equally critical for the million or so unfortunate Canadians, including children, who suffer high-impact chronic pain and can no longer obtain the drugs they need,” Barry Ulmer, Executive Director of the Chronic Pain Association of Canada, said in a statement. 

“These patients have long been sustained by the pharmaceuticals and don’t abuse them. But now they’re routinely forced down or completely off their medications, blamed for overdoses they have no part in.”

Some pain patients are turning to street drugs. In PNN’s recent survey of nearly 6,000 chronic pain patients in the United States, eight out of ten said they are being prescribed a lower dose or that their opioid prescriptions were stopped. Many are turning to other substances for pain relief. About 15 percent have obtained opioid medication from family, friends or the black market, or used street drugs such as heroin and fentanyl.

“I know seven people personally that have gone to the streets to get pain relief. Four of them died because it was mixed with fentanyl. Two committed suicide,” one patient told us.

“I have been without a prescription for two years and have been getting medication on the street. I cannot afford this and I have no criminal history whatsoever. I have tried heroin for the first time in my life, out of desperation and thank God, did not like it,” wrote another patient.

Barry Ulmer says these patients need a safe supply too.

“Prescribing opiates safely to those with addiction makes sense. But simultaneously denying legitimate pain patients their medications doesn’t. It’s pointless — and cruel. Let’s give people with pain the same respect and care we give people with addiction,” he said.

American Pain Society Files for Bankruptcy

By Pat Anson, PNN Editor

The American Pain Society (APS) filed for bankruptcy Friday after an overwhelming vote by its members to dissolve the financially troubled medical organization. In a membership vote last month, 93% voted in favor of a recommendation by the APS board of directors to file a voluntary petition for Chapter 7 bankruptcy.

The APS is a non-profit, research-based organization that focuses on the causes and treatment of acute and chronic pain. Although many of its members are researchers and academics who are investigating non-opioid treatments for pain, the APS was targeted as a defendant by Simmons Hanly Conroy and several other law firms seeking to recover billions of dollars in damages in opioid litigation cases.

In a press release, APS said efforts to resolve the “meritless” lawsuits without lengthy and expensive litigation were unsuccessful.

“It’s the perfect storm and now pointless to continue operations just to defend against superfluous lawsuits.  Our resources are being diverted to paying staff to comply with subpoenas and other requests for information and for payment of legal fees instead of funding research grants, sponsoring pain education programs, and public policy advocacy,” APS President William Maixner, DDS, said in a statement.

“As a result, the Board of Directors no longer believes APS can continue to fulfill its mission and meet the needs of our members and the pain care community.”

Press coverage of the APS often parroted what the opioid lawsuits alleged. The Guardian, for example, called the APS a “pawn of big pharma” and claimed the organization “pushed doctors to prescribe painkillers.”

The Guardian’s coverage was based largely on a report by Sen. Claire McKaskill (D-MO), who accepted over $400,000 in campaign donations from Simmons Hanly in her failed bid for re-election in 2018. APS is named as a defendant in several opioid lawsuits filed by Simmons Hanly, which stands to make hundreds of millions of dollars in contingency fees if the lawsuits are successful. The Guardian failed to mention any connection between Simmons Hanly and McKaskill.

The APS’ bankruptcy filing likely brings an end to its monthly publication, The Journal of Pain, which has been rated among the top five scientific journals in pain science. The current issue features research articles on diverse topics such as meditation for low back pain, diagnostic codes for fibromyalgia, whether opioids are effective for chronic noncancer pain, and the use of virtual reality to relieve arm pain.

“APS has been advocating for increased investment in research for many years, and it is particularly ironic that APS’s voice will go silent at this critical time in our history, when increased investment in pain research has finally become a reality in an effort to combat the opioid crisis,” said Roger Fillingim, PhD, an APS past president and professor of psychology at the University of Florida School of Dentistry.  

“There is a sad irony that the professional organization best poised to provide the spectrum of science to improve the prevention and treatment of pain and related substance abuse is defunct,” said APS President-elect Gary Walco, PhD, director of pain medicine at Seattle Children’s Hospital.

“Now, more than ever, our nation needs the collective efforts of leading scientists and clinicians who hold patients’ well-being at the highest premium.  The principal focus on punishing those in industry that may have contributed to the problem is shortsighted and far from sufficient.”

The APS is the second professional pain management organization to cease operations this year. In February, the Academy of Integrative Pain Management (AIPM) also shutdown. Opioid litigation has not only been costly for APS and AIPM, it has contributed to steep declines in financial support from pharmaceutical companies for other pain organizations, medical conferences and patient advocacy groups.   

Kratom Helps Me with Pain and Addiction

(Editor’s note: The author of this column is using the pseudonym “Marc Smith’ because he fears his employment and healthcare could be jeopardized if his true identity were known.)

By Marc Smith, Guest Columnist

I have had a long and treacherous battle with health problems and substance abuse. Starting at age 14, I was diagnosed with multiple reoccurring bone tumors on my right leg below the knee. This led to six major surgeries; three for tumor removal and three for MRSA bacterial infection treatment and debridement.

My knee is completely damaged from the tumor destroying the top of my tibia and the bacteria completely eating away at my meniscus and cartilage. I have severe chronic and acute pain in that leg. I am not a candidate for a knee replacement due to the bone being too damaged and it is not a stable site for an artificial joint.

I have also been in a severe car accident that lacerated my left arm, broke the fibula in my left leg and tore the meniscus in my left knee.

The treatment of these ailments came with a lot of prescribed narcotic pain medications on a regular basis from age 14 on. My tolerance to these medications grew astronomically over 15 years until they stopped working effectively.

I eventually was buying OxyContin on the street and abusing it heavily. This led to IV heroin and cocaine use, and the loss of anything of real value I had.

I struggled with this crippling addiction for 18 years. I tried methadone, Suboxone, Vivitrol and complete abstinence -- with no significant success with any of them. Finally, I tried a strong 12-step recovery program. It worked temporarily, but the physical pain would become too much and I would relapse on opiates.

A year ago, I found kratom and decided to try it for pain relief. It helps me with pain, helps me sleep, curbs craving, and allows me to function and participate in daily life without being in extreme pain. I do not have extreme tolerance building problems with kratom like I did with opioids. The side effects are extremely minor and do not impair my judgment or ability to function.

I am up at 4:30 AM every day and at the gym by 4:45 cycling for an hour. I have found the recumbent bike does not hurt my leg that badly. I lost weight due to exercise and diet changes that kratom helped me make. I am much more positive about taking care of myself and am able to be present for life.

My pain hasn’t completely vanished, but it is manageable due to kratom. My spiritual growth has been a big factor as well in my 12 months of sobriety. These two things working in harmony have literally saved my life. I am a completely different person and my family has their son back.

I do not want to die and the fact that this harmless plant is being targeted makes me scared for my life. Let’s focus on rehabilitation and recovery methods. Let’s focus on illicit fentanyl and other synthetic chemicals, not a natural botanical. Please, take a step back and look at kratom success stories like mine.

Do you have a story you want to share on PNN? Send it 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.

How Opioid Critics and Law Firms Profit From Litigation

By Pat Anson, PNN Editor

Dr. Andrew Kolodny has long been known as one of the most strident critics of opioid prescribing. The founder and Executive Director of Physicians for Responsible Opioid Prescribing (PROP) has claimed that drug makers and a web of industry-funded groups are to blame for the nation’s addiction and overdose crisis.

Kolodny has accused the so-called “opioid lobby” of undermining the CDC opioid guideline, claimed pain patients are being “effectively manipulated” by drug makers, and called the American Cancer Society a “shady organization” because it accepts outside funding. 

Kolodny even spoke about an “opioid mafia” as he testified as an expert witness in Oklahoma’s opioid lawsuit against Johnson & Johnson.

“We’ve seen Johnson & Johnson promote opioids in this unbranded campaign, funding front groups, patient groups meant to look like grassroots organizations that promoted opioids, funding professional groups that were promoting opioids,” Kolodny testified.  

“We know that Johnson & Johnson participated in the Pain Care Forum, a group that I have referred to as the opioid mafia, working to protect their stake in the opium supply into the United States.”

Kolodny’s hyperbole is catnip to compliant reporters who can usually count on him to return their calls and provide a good quote.  A psychiatrist and former chief medical officer for the addiction treatment chain Phoenix House, Kolodny is the go-to source for many news organizations covering the opioid crisis. He now co-directs an opioid research program at Brandeis University that is funded by a federal grant.

Kolodny’s has long maintained that he is free of any conflicts of interest and that PROP has never accepted funding from the pharmaceutical industry.

“I don’t believe physicians should be helping drug companies market their products,” he testified in Oklahoma. “It’s very easy to fool yourself when it’s profitable to fool yourself.”

Lawyers for Johnson & Johnson have opened a window into a profitable sideline Kolodny has as a paid consultant and expert witness for law firms involved in opioid litigation.

Kolodny stands to make upwards of half a million dollars working for the law firm of Nix Patterson & Roach, one of three outside law firms hired by Oklahoma Attorney General Mike Hunter to handle the case against Johnson & Johnson.

“It’s very easy to fool yourself when it’s profitable to fool yourself.”

— Dr. Andrew Kolodny

Kolodny testified that he’s being paid $725 an hour by Nix Patterson and could collect up to $500,000 for his services – possibly even more, depending on the length of the Oklahoma trial. Under questioning, Kolodny also acknowledged that he was paid $725 an hour as a consultant for at least one other law firm involved in opioid litigation.

“I don’t think it should be a secret that I’m being compensated,” Koldony said, adding that he worked for Nix Patterson about ten hours a week before the trial started and 40 hours a week since it began four weeks ago. At his hourly rate, Kolodny’s weekly pay would be $29,000.

Nix Patterson can easily afford to pay Kolodny. According to the terms of their contingency agreement with Oklahoma, the three law firms stand to collect up to 25% of any damages and penalties. With $17.5 billion being sought from Johnson & Johnson, Nix Patterson’s share could theoretically add up to nearly $2.5 billion. 

Purdue Pharma and Teva Pharmaceuticals have already settled out-of-court with Oklahoma for far less — $270 million and $85 million respectively.  Nix Patterson’s share of the Purdue settlement alone was $31.6 million.

Compensation Not Disclosed

Koldony’s work as a paid witness in opioid litigation is not disclosed on Brandeis University’s website, PROP’s website or on the website of the Steve Rummler Hope Network, a non-profit that is the “fiscal sponsor” of PROP.  

A non-profit fiscal sponsorship is an IRS loophole that allows the Rummler Hope Network to collect tax deductible donations on PROP’s behalf — even though PROP is not a registered charity. The identity of PROP’s donors and the size of their donations have never been disclosed.

Kolodny’s work in opioid litigation was also not disclosed in a 2017 research study he co-authored that was published in JAMA Internal Medicine (ironically a study about conflict-of-interest), nor is it disclosed in a JAMA op/ed on the opioid crisis that he co-authored that same year with former CDC director Thomas Frieden, MD.

JAMA did not respond to a request for comment on whether Kolodny violated its disclosure policy for authors, which “requires complete disclosure of all relevant financial relationships and potential financial conflicts of interest, regardless of amount or value.”

Kolodny serves on the medical advisory committee of the Rummler Hope Network, along with PROP President Jane Ballantyne, MD. Coincidentally, Ballantyne worked as a paid consultant for Cohen Milstein Sellers & Toll – another law firm involved in opioid litigation in New Jersey, Indiana, Vermont, California and Illinois.

Kolodny testified in the Oklahoma trial that he also did some consulting for attorney Linda Singer at Cohen Milstein, which The New York Times profiled in 2014 as a politically influential law firm that was laying the groundwork for opioid lawsuits around the country. Singer was the lead outside counsel for the City of Chicago and Santa Clara County, California, two of the first jurisdictions to file opioid lawsuits.

“The lawsuits follow a pattern: Private lawyers, who scour the news media and public records looking for potential cases in which a state or its consumers have been harmed, approach attorneys general. The attorneys general hire the private firms to do the necessary work, with the understanding that the firms will front most of the cost of the investigation and the litigation. The firms take a fee, typically 20 percent, and the state takes the rest of any money won from the defendants,” the Times reported.

Singer left Cohen Milstein in 2017 to join Motley Rice, yet another law firm that specializes in healthcare litigation. PNN was unable to verify whether Kolodny was still on the payroll of Cohen Milstein, Motley Rice or any other law firms. He refused to discuss his work in opioid litigation.

“I’m not interested in answering any questions or talking to you,” Kolodny told this reporter.

PharmedOUT’s Paid Expert Witness

Another vocal critic of opioid prescribing is Dr. Adriane Fugh-Berman, Director of PharmedOUT, a program at Georgetown University Medical Center that seeks to expose deceptive marketing practices in the healthcare industry.

In a recent column in STAT News, Fugh-Berman and two of her grad students echoed many of Kolodony’s complaints about opioid manufacturers — claiming that “industry-funded attacks” on the CDC guideline by physician and patient advocacy groups were eroding public health.   

“The eerily similar attacks on the guideline… raise the question of whether this is a coordinated attempt by opioid manufacturers to use third parties to undermine, discredit, and smear the guideline,” they wrote. “There’s certainly a credible motive for opioid manufacturers to do this: The CDC guideline is an effective, evidence-based tool that has helped decrease inappropriate and dangerous prescribing of opioids for chronic pain patients.”

DR. ADRIANE FUGH-BERMAN

Unlike Kolodny, Fugh-Berman does disclose on PharmedOUT’s website that she is “a paid expert witness.” It is not disclosed, however, which law firms Fugh-Berman works for, what cases she is working on, or how much she is paid.

After initially agreeing to a telephone interview with PNN, Fugh-Berman abruptly cancelled. She did answer a few questions by email.

“I am a paid expert witness at the request of plaintiffs in litigation regarding pharmaceutical and medical device marketing practices, including litigation brought by several states and cities against opioid manufacturers.  My expert witness work has been disclosed to Georgetown, in my publications, and on our website,” Fugh-Berman wrote.

Like PROP, PharmedOUT does not disclose it donors, which Fugh-Berman calls “a common practice.”

“(We) are funded primarily by individual donations, mostly small donations but we have several major donors. We do not provide the names of our individual donors,” she said.

Fugh-Berman did disclose that Kaiser Permanente sponsored PharmedOUT’s recent opioid conference, which featured a speech by Kolodny entitled “How the Opioid Lobby Protected the Status Quo” and a talk by a Kaiser doctor on “How Kaiser Permanente Promotes Rational Prescribing.”  

Lobbying and Campaign Donations

Law firms involved in opioid litigation have played a significant role in some political campaigns and in shaping news coverage of the opioid crisis. The national firm of Simmons Hanly Conroy — which claims to have “effectively invented large-scale, multi-defendant opioid litigation” — represents dozens of states, counties and cities that are suing drug companies. According to reports, Simmons Hanly’s contingency fee will be as high as one-third of the proceeds from opioid settlements.

In the 2018 congressional election, Simmons Hanly spent nearly $1.2 million on lobbying and donated over $1 million to candidates, according to OpenSecrets.org. Missouri Sen. Claire McCaskill (D) received five times more than any other candidate — nearly $410,000 — from donors affiliated with Simmons Hanly.

In February of that year, McCaskill released a report that was sharply critical of physician and patient advocacy groups for accepting money from opioid manufacturers. At least two organizations cited in the McCaskill report — the American Academy of Pain Medicine and the American Pain Society (APS) — are named as defendants in opioid lawsuits filed by Simmons Hanly. The APS recently filed for bankruptcy, citing the high cost of defending itself against “meritless” law suits.

The report made headlines for McCaskill, who ultimately lost her bid for re-election, but continues to make news today — most recently in the STAT news column written by paid expert witness Dr. Fugh-Berman.

With the Oklahoma trial now heading into its fifth week, enormous amounts of money are at stake. A verdict against Johnson & Johnson could lead to a cascade of settlements in hundreds of other opioid lawsuits that could cost the pharmaceutical industry up to $50 billion. States, cities and counties would certainly benefit from a settlement of that size. So would the law firms that represent them – and their paid witnesses.

5 Million U.S. Cancer Survivors Live with Chronic Pain

By Pat Anson, PNN Editor

Over five million cancer survivors in the United States live with chronic pain, a fast-growing population that is expected to double by 2040 due to the aging of the population, early cancer detection and advances in treatment, according to a new study by the American Cancer Society.

Chronic pain is one of the most common side effects of chemotherapy and other forms of cancer treatment, but until now there has been little information on its prevalence among cancer survivors.

Researchers looked at data from the National Health Interview Survey from 2016-2017 and found that about a third of cancer survivors (34.6%) have chronic pain. About one in six (16.1%) have “high impact” chronic pain (HICP) – defined as pain that limits life or work activities on most days.

Based on that survey data, researchers estimate the total number of cancers survivors in the U.S. at 15.5 million. About 5.39 million of them have chronic pain and 2.51 million have high impact chronic pain.

“We found the prevalence of chronic pain and HICP among cancer survivors to be almost double that in the general U.S. population. Chronic pain and HICP were more prevalent in survivors who were unemployed and who had low socioeconomic status, inadequate insurance, and had some specific types of cancer,” researchers reported in JAMA Oncology.

“The patterns of chronic pain that we observed in cancer survivors may be explained by barriers to cancer care and pain management as well as by the type and extent of cancer treatment received.”

One barrier to pain management stems from efforts to rein in opioid prescribing to prevent abuse and addiction. While the 2016 CDC opioid guideline is intended for “noncancer” patients, it is also applies to patients “who have completed cancer treatment, are in clinical remission, and are under cancer surveillance only.”

Two experts in oncology and palliative care at the University of Pennsylvania say the CDC’s inclusion of cancer survivors was a mistake because it is not uncommon for cancer pain to persist long after a cancer is treated.  

“Unfortunately, this arbitrary distinction is not consistent with the evidence of pain trajectory in cancer survivors,” Neha Vapiwala, MD, and Salimah Meghani, PhD, wrote in an op/ed also published in JAMA Oncology. “Similar levels of pain were reported in survivors who were still receiving cancer treatment and those who had completed active cancer treatment.”

It’s not uncommon for cancer patients undergoing active treatment to be denied pain medication. Many doctors are reluctant to prescribe opioids, regardless of the diagnosis.

“My cancer doctor will no longer prescribe pain meds for me because I now see a pain doctor. The pain doctor doesn't understand the new cancer drug I'm on and that the side effects of this drug are pain, so he is very reluctant to manage my cancer pain,” a patient with lymphoma told us. “Many days I wonder if it would just be better to let the cancer take its course than to be scrutinized and treated like a criminal.”

April Doyle is being treated for Stage 4 terminal breast cancer, but a Rite Aid pharmacist refused to fill her prescription for Norco because he was worried about being fined or even losing his job. April’s video about the experience went viral.

“I have to take 20 pills a day just to stay alive,” she explains in the video. “Every time I take my pain pill prescription there, they give me the runaround. They don’t have enough in stock or they need me to come back tomorrow because they can’t fill it today. Or something stupid. It’s always something and it’s always some stupid excuse.”

The American Cancer Society study found that chronic pain was most common among cancer survivors treated for bone, kidney, throat-pharynx and uterine cancers.  About half still had pain after their cancer treatment ended.

Study Debunks Myths About Origins of Opioid Abuse

By Pat Anson, PNN Editor

It’s become a popular myth – and for some, a propaganda tool – to claim that opioid pain medication is a gateway drug to heroin and other street drugs.

An opioid education campaign called The Truth About Opioids – funded with taxpayer dollars from the White House Office of National Drug Control Policy — declares in big bold letters on its website that “80% of heroin users started with a prescription painkiller.”

The 80% figure stems from a 2013 study that found four out of five new heroin users had previously abused prescription opioids by using them non-medically.

Importantly, the heroin users were not asked if they had a valid prescription for opioids or even where they got them – but that doesn’t stop federal agencies from citing the study as proof that illegal drug use often starts with a legal opioid prescription.

The Drug Enforcement Administration last year used the 80% figure to justify steep cuts in the supply of prescription opioids, claiming in the Federal Register that addicts often get hooked “after first obtaining these drugs from their health care providers.”

“The 80% statistic is misleading and encourages faulty assumptions about the overdose crisis and medical care,” Roger Chriss explained in a PNN column last year.

A new study by researchers at Penn State University debunks the myth that the opioid crisis was driven primarily by doctors’ prescriptions. The researchers conducted a series of surveys and in-depth interviews with opioid abusers in southwestern Pennsylvania -- a region hard hit by opioid addiction -- asking detailed questions about their drug use.

The study was small – 125 people were surveyed and 30 of them were interviewed – but the findings provide a an important new insight into the origins of opioid abuse and the role played by painkillers.

"What emerged from our study -- and really emerged because we decided to do these qualitative interviews in addition to a survey component -- was a pretty different narrative than the national one,” said lead author Ashton Verdery, PhD, an assistant professor of sociology, demography and social data analytics at Penn State. "There's a lot about that narrative that I think is an overly simplistic way of thinking about this."

‘Opioids Were Never the First Drug’

Verdery and his colleagues found that over two-thirds of those interviewed (66.7%) first abused a prescription opioid that was given, bought or stolen from a friend or family member. Another 7% purchased the drugs from a stranger or dealer. Only one in four (26%) started by abusing opioid medication that was prescribed to them by a doctor.

“We found that most people initiated through a pattern of recreational use because of people around them. They got them from either siblings, friends or romantic partners," said Verdery. “Participants repeatedly reported having a peer or caregiver in their childhood who had a substance use problem. Stories from childhood of witnessing one of these people selling, preparing, or using drugs were very common. Being exposed to others’ substance use at an early age was often cited as a turning point for OMI (opioid misuse) and of drug use in general.”

And prescription opioids were not the gateway drugs they are often portrayed to be. Polysubstance abuse was common and usually began with drugs such as alcohol, marijuana, cocaine, methamphetamine, prescription sedatives and prescription stimulants.

“It is important to note that interviewees universally reported initiating OMI only after previously starting their substance use career with another drug (e.g., alcohol, marijuana, cocaine). Opioids were never the first drug used, suggesting that OMI is likely associated with being further along in one’s drug using career,” Verdery reported in the Journal of Addictive Studies.

Verdery says additional studies are needed on the origins of drug abuse and that researchers should focus on the role that other substances play in opioid addiction. Only then can proper steps be taken to prevent abuse and addiction before they start.

"We think that understanding this mechanism as a potential pathway is worth further consideration," said Verdery. "It's not just that people were prescribed painkillers from a doctor for a legitimate reason and, if we just crack down on the doctors who are prescribing in these borderline cases we can reduce the epidemic.”