Online Health Programs Help Reduce Pain

By Pat Anson, PNN Editor

Online health programs can help patients with chronic pain conditions learn how to manage their pain and other symptoms, according to two new studies. One “e-health” program even helped patients reduce their use of opioids.

Online pain self-management programs have proliferated in recent years due to the pandemic and greater acceptance of telemedicine, but few studies have assessed their effectiveness. The programs provide content similar to what a patient might receive from a pain psychologist — in-person treatment that often is not accessible or affordable for everyone.

In a small study at the University of California, Irvine (UCI), researchers recruited sickle cell patients through advertisements on Facebook, Reddit and other social media sites. Sickle cell disease is a painful genetic disorder that primarily affects people of African or Hispanic descent. Many sickle cell patients face stigma when they seek treatment for pain flares and have learned to distrust the healthcare system.

“Before the study, we were told sickle cell researchers thought online outreach to patients would not work as patients wouldn't trust the process,” said Sean Young, PhD, a professor in UCI’s Departments of Emergency Medicine and Informatics. “Surprisingly, we found it worked really well.”

Researchers recruited 32 young adult patients with sickle cell to watch a 20-minute video that taught mindfulness meditation. Afterward, participants were emailed links to additional audio recordings for ongoing practice. Patients rated their pain intensity, anxiety and depression before and after the mindfulness training.

“Patients with sickle cell disease struggle with pain, and unfortunately, they have few options for relief,” said Young. “We developed and tested a brief online intervention to teach them mindfulness and found that it helped their pain both immediately and for six weeks after they viewed the mindfulness exercise.”

The study findings, recently published in the journal Cureus, show that after six weeks of mindfulness training, pain intensity declined an average of 1.3 points, anxiety decreased by 1.8 points, and depression declined by 1.7 points.

Researchers think younger sickle cell patients feel more comfortable participating in e-health programs. About 97% of participants watched the full mindfulness video and a little over half listened to additional recordings.

Reduced Opioid Use 

The second study of an e-health program, published in the journal Pain, involved over 400 pain patients on long-term opioid treatment who were recruited by researchers at Washington State University. Half the participants watched a pain self-management program and the other half received treatment as usual, serving as a control group.

Patients in the e-health group watched an online course designed by a psychologist, called Goalistics Chronic Pain Management, which aims to help people manage their pain through cognitive behavioral therapy, exercise and relationship advice, as well as information about opioid use and risks.

After six months, over half the patients in the e-health group (53.6%) were able to reduce their opioid dose by 15% or more, compared to 42.3% of patients in the control group.

There was not much change in pain levels in either group. Pain intensity declined by at least two points in only 14.5% of e-health participants, and in 6.8% of the control group.

"These were very encouraging findings: not only were they reducing opioids but also their pain was not becoming worse," said lead author Marian Wilson, PhD, an Associate Professor of Nursing at WSU. "Some people are hesitant to stop their opioid medication because they fear their pain will increase, but we found that at least on average in this population, they could reduce their opioids a bit and not have increased pain symptoms."

Wilson and her colleagues also observed the e-health patients improved their knowledge about pain, confidence in managing it, and their coping skills.

"The idea is to put the patient in the driver's seat because we can give them a prescription for opioids, and that will work for a little while, but over time for chronic pain, it's not usually going to be the solution to fix all their troubles," she said.

The Goalistics e-health program currently has a monthly $30 fee, which usually is not covered by insurance. In addition to pain management, Goalistics also has an online self-management program for depression.

Polypeptides: A Promising Treatment for Intractable Pain

By Dr. Forest Tennant, PNN Columnist

We have long noted that persons with adhesive arachnoiditis (AA) and other causes of intractable pain who follow a high protein diet and take amino acid supplements usually have better treatment outcomes. They need fewer opioids, function better, and have a good quality of life.

Protein is composed of about two dozen separate building blocks called amino acids. Once ingested, they chemically join together and cause specific effects in the body. When two or more amino acids combine and partner, they are called polypeptides. Two polypeptides that relieve pain and heal damaged tissue are KPV (lysine-proline-valine) and Body Protection Compound or BPC-157.

KPV is useful primarily for pain relief and to reduce inflammation in the brain and spinal canal. It activates the neurotransmitters endorphin and melanocortin, which are stored in the hypothalamus. 

BPC-157 is a chain of 15 amino acids. Its primary function is to regenerate and heal tissue, including neural tissues, receptors, arachnoid membrane, cartilage and intervertebral discs. We believe it also helps heal spinal fluid leaks. BPC has a great effect on the stomach and intestine. 

Because polypeptides (PP’s) are fundamentally a conglomeration of food particles, when swallowed they are digested in the stomach and lose much of their effectiveness. That is why KPV and BPC-157, like insulin, are often taken by subcutaneous injection. Both PP’s are also available in non-injection formulations. KPV comes in an oral or nasal spray, while BPC-157 is available as sublingual tablet taken under the tongue or as a spray. 

A list of several companies that supply PP’s online is available in this bulletin.  

Who Should Take Polypeptides  

We have long-recommended a three-component medical protocol for AA and other causes of intractable pain to (1) suppress inflammation and autoimmunity, (2) regenerate tissue and (3) relieve pain. Our starting protocol for AA is now changed and anchored with KPV and BPC-157.  

To start, we recommend daily use of a polypeptide for a week. After a week, use it 3 to 5 days a week. Some persons with AA like to use KPV daily as it greatly reduces pain. Others can become tolerant to polypeptides, so skipping some days will keep the polypeptide active and effective.  

All persons with AA and/or intractable pain should, in our opinion, try the two PP’s provided here to enhance pain relief, promote tissue regeneration and healing, and reduce the use of potent medications, including corticosteroids, ketorolac, benzodiazepines, and opioids.  We also believe PP’s can reduce the use of risky surgery and invasive procedures.  

Several other polypeptides are being studied, and the Tennant Foundation will keep you apprised of new discoveries and developments. We consider polypeptides a major advance in the treatment of AA and other intractable pain conditions. 

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. This column is adapted from bulletins recently issued by the Tennant Foundations’s Arachnoiditis Research and Education Project. Readers interested in subscribing to the bulletins should click here.

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.  

Why Chronic Fatigue Is Common for Older Adults

By Judith Graham, Kaiser Health News

Nothing prepared Linda C. Johnson of Indianapolis for the fatigue that descended on her after a diagnosis of stage 4 lung cancer in early 2020.

Initially, Johnson, now 77, thought she was depressed. She could barely summon the energy to get dressed in the morning. Some days, she couldn’t get out of bed.

But as she began to get her affairs in order, Johnson realized something else was going on. However long she slept the night before, she woke up exhausted. She felt depleted, even if she didn’t do much during the day.

“People would tell me, ‘You know, you’re getting old.’ And that wasn’t helpful at all. Because then you feel there’s nothing you can do mentally or physically to deal with this,” she told me.

Fatigue is a common companion of many illnesses that beset older adults: heart disease, cancer, rheumatoid arthritis, lung disease, kidney disease, and neurological conditions like multiple sclerosis, among others. It’s one of the most common symptoms associated with chronic illness, affecting 40% to 74% of older people living with these conditions, according to a 2021 review by researchers at the University of Massachusetts.

This is more than exhaustion after an extremely busy day or a night of poor sleep. It’s a persistent whole-body feeling of having no energy, even with minimal or no exertion.

“I feel like I have a drained battery pretty much all of the time,” wrote a user named Renee in a Facebook group for people with polycythemia vera, a rare blood cancer. “It’s sort of like being a wrung-out dish rag.”

Fatigue doesn’t represent “a day when you’re tired; it’s a couple of weeks or a couple of months when you’re tired,” said Dr. Kurt Kroenke, a research scientist at the Regenstrief Institute in Indianapolis, which specializes in medical research, and a professor at Indiana University’s School of Medicine.

When he and colleagues queried nearly 3,500 older patients at a large primary care clinic in Indianapolis about bothersome symptoms, 55% listed fatigue -- second only to musculoskeletal pain (65%) and more than back pain (45%) and shortness of breath (41%).

Separately, a 2010 study in the Journal of the American Geriatrics Society estimated that 31% of people 51 and older reported being fatigued in the past week.

The impact can be profound. Fatigue is the leading reason for restricted activity in people 70 and older, according to a 2001 study by researchers at Yale. Other studies have linked fatigue with impaired mobility, limitations in people’s abilities to perform daily activities, the onset or worsening of disability, and earlier death.

‘Alarm Signal That Something Is Wrong’

What often happens is older adults with fatigue stop being active and become deconditioned, which leads to muscle loss and weakness, which heightens fatigue.

“It becomes a vicious cycle that contributes to things like depression, which can make you more fatigued,” said Dr. Jean Kutner, a professor of medicine and chief medical officer at the University of Colorado Hospital.

To stop that from happening, Johnson came up with a plan after learning her lung cancer had returned. Every morning, she set small goals for herself. One day, she’d get up and wash her face. The next, she’d take a shower. Another day, she’d go to the grocery store. After each activity, she’d rest.

In the three years since her cancer came back, Johnson’s fatigue has been constant. But “I’m functioning better,” she told me, because she’s learned how to pace herself and find things that motivate her, like teaching a virtual class to students training to be teachers and getting exercise under the supervision of a personal trainer.

When should older adults be concerned about fatigue? “If someone has been doing OK but is now feeling fatigued all the time, it’s important to get an evaluation,” said Dr. Holly Yang, a physician at Scripps Mercy Hospital in San Diego and incoming board president of the American Academy of Hospice and Palliative Medicine.

“Fatigue is an alarm signal that something is wrong with the body but it’s rarely one thing. Usually, several things need to be addressed,” said Dr. Ardeshir Hashmi, section chief of the Center for Geriatric Medicine at the Cleveland Clinic.

Among the questions physicians should ask:

• Are your thyroid levels normal?

• Are you having trouble with sleep?

• If you have underlying medical conditions, are they well controlled?

• Do you have an underlying infection?

• Are you chronically dehydrated?

• Do you have anemia, an electrolyte imbalance or low levels of testosterone?

• Are you eating enough protein?

• Have you been feeling more anxious or depressed recently?

• Are medications you’re taking contributing to fatigue?

“The medications and doses may be the same, but your body’s ability to metabolize those medications and clear them from your system may have changed,” Hashmi said, noting that such changes in the body’s metabolic activity are common as people become older.

Often No Obvious Cause

Many potential contributors to fatigue can be addressed. But much of the time, reasons for fatigue can’t be explained by an underlying medical condition.

That happened to Teresa Goodell, 64, a retired nurse who lives just outside Portland, Oregon. During a December visit to Arizona, she suddenly found herself exhausted and short of breath while on a hike, even though she was in good physical condition. At an urgent care facility, she was diagnosed with an asthma exacerbation and given steroids, but they didn’t help.

Soon, Goodell was spending hours each day in bed, overcome by profound tiredness and weakness. Even small activities wore her out. But none of the medical tests she received in Arizona and subsequently in Portland — a chest X-ray and CT scan, blood work, a cardiac stress test — showed abnormalities.

“There was no objective evidence of illness, and that makes it hard for anybody to believe you’re sick,” she told me.

Goodell started visiting long covid web sites and chat rooms for people with chronic fatigue syndrome. Today, she’s convinced she has post-viral syndrome from an infection. One of the most common symptoms of long covid is fatigue that interferes with daily life, according to the Centers for Disease Control and Prevention.

Managing Fatigue

There are several strategies for dealing with persistent fatigue. In cancer patients, “the best evidence favors physical activity such as tai chi, yoga, walking, or low-impact exercises,” said Dr. Christian Sinclair, an associate professor of palliative medicine at the University of Kansas Health System. The goal is to “gradually stretch patients’ stamina,” he said.

With long covid, however, doing too much too soon can backfire by causing “post-exertional malaise.” Pacing one’s activities is often recommended: doing only what’s most important, when one’s energy level is highest, and resting afterward. “You learn how to set realistic goals,” said Dr. Andrew Esch, senior education advisor at the Center to Advance Palliative Care.

Cognitive behavioral therapy can help older adults with fatigue learn how to adjust expectations and address intrusive thoughts such as, “I should be able to do more.” At the University of Texas MD Anderson Cancer Center, management plans for older patients with fatigue typically include strategies to address physical activity, sleep health, nutrition, emotional health, and support from family and friends.

“So much of fatigue management is about forming new habits,” said Dr. Ishwaria Subbiah, a palliative care and integrative medicine physician at MD Anderson. “It’s important to recognize that this doesn’t happen right away: It takes time.”

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.

More States Should Require Insurers to Pay for Medical Cannabis

By Paul Armentano, Guest Columnist

Should health insurance programs reimburse patients for their use of medical cannabis products? In a growing number of states, the courts are saying “yes.”

In the most recent example, a Pennsylvania Appellate Court ruled that workers’ compensation plans must cover cannabis-related expenditures when an employee uses it to recover from a workplace-related injury. The court ruled that employees in Pennsylvania possess “a statutory right” to be reimbursed for medical marijuana expenses that are reasonable and necessary to treat a work injury.  

“The MMA (Pennsylvania Medical Marijuana Act) specifically mandates that no medical marijuana patients be denied any rights for (the) lawful use of medical marijuana,” the Court said.

The Pennsylvania Court is not the first to issue an affirmative verdict in this matter. Courts in several states, including Connecticut, New Hampshire, New Jersey, New Mexico and New York, have provided similar opinions – determining that the denial of compensation claims would be antithetical to the legislatures’ express findings that cannabis is a state-legal therapy.

By contrast, courts in some other states, including Minnesota, have issued contradictory opinions – finding that it would be inappropriate for insurers to reimburse claimants for their use of a federally illegal substance. Federal law still classifies marijuana as a Schedule I controlled substance, placing it in the same legal category as heroin.

In most states, however, the law is largely silent on the issue. But don’t expect that to be the case for much longer. As scientific consensus and public attitudes surrounding the safety and efficacy of medical cannabis continue to evolve, the way insurers approach patients’ use of marijuana is likely to change too.

For example, lawmakers in Massachusetts recently introduced legislation explicitly providing that injured employees be reimbursed for their medical marijuana-related costs. In New York, lawmakers just advanced legislation, A. 4713, requiring public insurance plans to treat medical cannabis like any other medication. 

Thirty-eight states and the District of Columbia currently regulate the production and dispensing of cannabis for medical purposes. No state government has ever repealed or even rolled back these laws. That’s because these policies are widely accepted among both the public and among health professionals.

In fact, according to nationwide survey data recently compiled by the Centers for Disease Control and Prevention, over two-thirds of practicing physicians acknowledge the efficacy of medical cannabis and over one-quarter say that they have recommended it to their patients. 

Tens of millions of Americans are now using cannabis therapeutically. The number has doubled over the past decade, as peer-reviewed data that support the use of medical cannabis for the treatment of pain, multiple sclerosis, and other ailments has continued to grow. In many instances, patients are replacing their use of opioids, benzodiazepines and other prescription medications with cannabis because they find it more effective and with fewer adverse side effects. 

In short, most patients, most physicians, and most state laws view cannabis as a legitimate therapeutic option. Therefore, the millions of Americans who rely upon medical cannabis products ought to be afforded the same entitlements as those who use other conventional medications and therapies. Those privileges should include insurance-provided reimbursement for medical cannabis treatment.  

State legislators ought to see to it that this is a right provided for and protected in jurisdictions where medical marijuana is legally available under the law. 

Paul Armentano is the Deputy Director for NORML, the National Organization for the Reform of Marijuana Laws.

Why Positivity and Gratitude Beat the Alternative

By Mia Maysack, PNN Columnist

As I write this, I am 33 years old.  And I've lived in pain every day for almost 23 years.

My pain has only gotten more complicated over time, more difficult to deal with and manage. It is intractable, as well as incurable. There have never been treatment options for me that truly worked, only those that temporarily masked the pain or worsened the symptoms and caused irreversible complications.

Those of you who at any point gained access to something that worked or alleviated your discomfort to any extent are privileged. Because some of us have literally not experienced that.

As a 10-year old child whose life was forever changed by a bacterial infection and near death experience, there was no other option for me than to cling desperately to the concept of  "positivity." The only other choice at that point would've been a defeatist, victim mentality:  Why did this happen to me?  I don’t deserve it. My life is ruined. There’s no hope for the future.

I still have those thoughts at times, but I consciously choose not to accept them as the final say or whole picture.  Life hadn't even begun for me when I was stricken, yet I was strong enough to stand firm in my Truth:  I'm not yet ready to die or give up on my quality of life.

As time went on, things got even harder and without any dependable relief. I was often pushed to what felt like my breaking point. It dawned on me that a “positive” attitude was not going to be enough to survive, so my thought process and mindset had to evolve.

Looking at the bright side, being thankful I wasn't dead, and acknowledging that things could have been worse (and might still be) wasn't sufficient to peel my fragmented sense of self off the cold hard floor. So, my focus in life turned to gratitude. 

I became grateful for that cold hard floor, where I could curl up in a fetal position and count my blessings. At least I was still above ground and could find solace in the ability to live on for the sake of other people, so that they wouldn't feel as rejected, alone, forsaken and shunned as I was.

This approach worked, until it didn't.

When even the “attitude of gratitude” didn't suffice, I had to re-examine it and take it all back to basics, recalling things I'd often skip over and take for granted, such as the gift of my senses, the ability to fill my lungs with air, and possessing access to endless knowledge at my fingertips.

Of course, I could never lose sight of the fact that I was incredibly lucky to still be alive, even when it didn’t feel like it.  But these beliefs were undeniable pillars that held me up through times when I couldn't move, think straight, or do anything but stay in bed and cry.

More recently, even this approach was falling short. I was sick and tired, nearing the point of no return. All the motivational tools I cultivated on my own were falling short. What do I do now?  Where do I turn?

These efforts do not come easily and certainly do not represent an absence of intrusive thoughts or negative feelings. Remaining consumed in the darkness has almost cost me everything, on more occasions than I'm able to keep track of. 

But it dawned on me early on that I had a choice. Instead of investing energy in my ailments, I could focus on my response to them. It was a no-brainer to realize that fixating on all that was wrong in my life doesn't improve it or help me feel any better. To choose that kind of suffering is far more toxic and tragic than my pain ever could be.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

Fibromyalgia Treatment Is a Real Gas

By Pat Anson, PNN Editor

Immersing fibromyalgia patients in high levels of oxygen is more effective at treating their pain and other symptoms than two medications commonly prescribed for the disorder, according to a new study.

Researchers at Tel Aviv University have been studying hyperbaric oxygen therapy (HBOT) for years as a possible treatment for fibromyalgia, a poorly understood condition characterized by widespread body pain, headaches, fatigue, depression and insomnia.  

Hyperbaric medicine is a form of treatment in which patients stay in a pressurized chamber and breathe 100% oxygen to help them heal faster. HBOT has long been used to treat infections, severe burns, carbon monoxide poisoning, and even scuba divers recovering from decompression sickness. The higher air pressure allows lungs to gather more oxygen than they would normally, and promotes the growth of new blood vessels and neurons in the brain.

In a 2015 study, researchers found that HBOT can also induce neuroplasticity in the brain and significantly reduce fibromyalgia pain.

"Until 15 to 20 years ago, there were doctors who believed that it was a psychosomatic illness and recommended that patients with chronic pain seek mental health care¸” said Shai Efrati, MD, of the Sagol Center for Hyperbaric Medicine and Research at Shamir Medical Center. “Today we know that it is a biological illness, which damages the brain's processing of the signals received from the body. When this processing is malfunctioning, you feel pain without any real damage in related locations.”

Efrati and his colleagues recruited 64 adults who suffer from fibromyalgia as a result of a traumatic head injury, and randomly assigned them to two groups.

One group was exposed to 100% pure oxygen in a hyperbaric chamber for 90 minutes, five times a week for three months; while the second group received either pregabalin (Lyrica) or duloxetine (Cymbalta), two FDA-approved medications for fibromyalgia.

The study findings, published in PLOS One, show that HBOT induced significant improvement in pain levels, quality of life, and emotional and social function. The clinical changes were correlated with increased brain activity in the frontal and parietal regions of the brain, which are associated with function and emotional processing.

A HYPERBARIC oxygen CHAMBER. 

"The results were dramatic," said Efrati. "At the end of the treatment, 2 out of 5 patients in the hyperbaric treatment group showed such a significant improvement that they no longer met the criteria for fibromyalgia. In the drug treatment group, this did not happen to any patient.

"In the group that received hyperbaric treatment, you could see the repair of the brain tissue, while in the control group there was only an attempt to relieve the pain -- without treating the damaged tissue -- and of course the medication group experienced the side effects associated with drug treatment.”

Duloxetine is an anti-depressant and pregabalin is an anti-seizure medication. Neither drug was initially developed to treat fibromyalgia, but were later repurposed as pain treatments.

"These drugs are not very effective,” said lead author Jacob Ablin, MD, from the Tel Aviv Sourasky Medical Center. "As a whole, existing treatments are not good enough. It is a chronic disease that significantly affects the quality of life, including young people, and hyperbaric medicine meets an acute need of these patients.”

Ablin says other non-pharmacological treatments are also beneficial for fibromyalgia, such as aerobic activity, hydrotherapy, cognitive-behavioral therapy and Tai Chi. He said quite a few patients request treatment with medical cannabis.

The studies are preliminary, and researchers say more long-term studies are needed to gauge the effects of HBOT after one, two and three years. But they’re encouraged by what they’re finding.

"This is a difference in approach: to cure instead of just treating the symptoms,” says Efrati. “Our goal as doctors is not only to treat the symptoms but to treat as much as possible the source of the problem, thus improving the quality of life of fibromyalgia patients."

DEA Gaslights Pain Patients Over ‘Unwillingness’ to Find Doctors

By Pat Anson, PNN Editor

Faced with record high overdoses, a fentanyl crisis, medication shortages and corruption within its own ranks, you’d think the Drug Enforcement Administration would have better things to do than gaslight chronic pain patients.

You’d be wrong.

In a blatant case of victim-blaming, a Department of Justice attorney claims that patients of a California doctor whose license to prescribe opioids was suspended last year by the DEA were not making any effort to find new physicians.

The DEA’s suspension of Dr. David Bockoff effectively shuttered his practice and left 240 patients – including many who suffer from rare and chronic health conditions – scrambling to find new providers and pain medication.

While Bockoff appealed his suspension, nearly a dozen of his patients went to the U.S. Court of Appeals in Washington DC, asking the court to let them intervene in the case – which would essentially give patients and their lawyers a seat at the table while the DEA decides whether to make Bockoff’s suspension permanent. 

It’s an unusual legal strategy that the DOJ and DEA are resisting. Last week Anita Gay, the DOJ’s lead attorney, filed a 6-page motion to have the patients’ case dismissed, saying they have no legal right to intervene in a DEA case against their doctor. Then she gaslighted Bockoff’s patients, blaming them for the life-threatening predicament that the DEA created for them. 

“Petitioners have had since October 25, 2022, to find a new physician and their unwillingness to do so does not warrant intervention,” wrote Gay, who works in the Criminal Division of the DOJ’s Narcotic and Dangerous Drug Section.

The alleged “unwillingness” to find new providers angered many of the patients, who have struggled for years to find doctors willing to treat their pain with high-dose opioids. Some traveled thousands of miles from out of state to see Bockoff.  

Patients say Gay was either misinformed or misleading judges in her motion to the DC Court of Appeals. Even her reference to “October 25, 2022” was puzzling, because patients didn’t learn about Bockoff’s suspension until November 1. Some went to his office that day for appointments and were turned away.  

“Ms. Gay’s assertion that patients are unwilling to find other providers to assist them in continuing successful treatment or even tapering their medication could not be further from the truth,” says Anne Fuqua, a disabled nurse in Alabama who lives with painful dystonia and arachnoiditis. Fuqua was able to find a palliative care doctor in Florida to take her as a patient. Others have not been as fortunate.

“The 60 plus patients I have spoken with who have been unable to find a new source of care have searched extensively for a new health care provider,” Fuqua told PNN. “The problem is that physicians are loathe to accept any new patients, much less those whose physician was the subject of a DEA investigation.” 

“Ms. Gay is aware of the medical environment that her office created. We have diligently tried to locate a pain management physician, but all of them fear losing their freedom and who can blame them with the current frenzied atmosphere?” said Dustin Parker, who also suffers from the painful spinal disease of arachnoiditis.

“It was awful, calling each time was full of anxiety, the little hope that we held onto was quickly extinguished each time we dialed. I began feeling an impending doom build. I thought if I could lose access to medical care, how would I care for my family, would I ever achieve my goals, and my dream of earning a retirement?”

‘To Say We’re Not Trying Is Absurd’ 

Gay did not respond to an email request for comment. Her assertion that patients were unwilling to find new providers seems particularly cruel, because two of Bockoff’s patients died after his suspension – not because of his medical care, but from the lack of it. 

Danny Elliott and his wife Gretchen were so distraught over his inability to find another doctor that they both committed suicide in their Georgia home on November 7.  Four weeks later, Jessica Fujimaki died at her home in Phoenix after unsuccessful attempts to find proper pain care.

Both Elliott and Fujimaki had incurable conditions that cause severe pain and needed high dose opioids to have any quality of life. 

“To say that this group of patients hasn’t made efforts to find alternative medical care is just bullshit. The last door open to them was slammed shut by the DEA.”

— Jim Elliott, brother of deceased patient

“To say that this group of patients hasn’t made efforts to find alternative medical care is just bullshit. The last door open to them was slammed shut by the DEA,” said Jim Elliott, Danny’s brother  

“It’s not like Jessica wasn’t trying to look for another doctor, because we tried. And no one would take her in the state of Arizona,” said Tad Fujimaki, Jessica’s husband. “The doctors don’t want to deal with (high dose opioid patients) because they know they’re going to get exposed. They’re going to be put under the microscope by DEA.” 

The Fujimakis were so desperate for pain medication that they made three trips to Mexico to buy opioids for Jessica – a risky move because counterfeit medication has been found in some Mexican pharmacies that cater to U.S. visitors.  

“For them to say we’re not trying is just absurd,” Fujimaki said. “It’s not just Jessica. All the other patients went through multiple doctors before they got to Dr. Bockoff. And they got denied, denied and denied. No one would take them as patients. And then finally Dr. Bockoff took them.”

Little has been revealed publicly about the DEA’s investigation of Bockoff. DEA agents first searched his office in September, 2021 and confiscated the medical records of all 240 patients. They determined that five of them were in “imminent danger” from Bockoff’s prescribing practices, but then waited over a year to suspend his license.

Much of the government’s case against Bockoff appears to be dependent on the opinions of Dr. Timothy Munzing, a family practice physician and outspoken critic of opioids, who has a lucrative sideline working as a consultant and expert witness for the DEA and DOJ. According to GovTribe, a website that tracks federal contracts, Munzing has made over $3.4 million in recent years working for the government.

In court documents, the DEA said Munzing was prepared to testify that Bockoff’s treatment of the five patients “fell below the standard of care in California” and was “not for a legitimate medical purpose.” But the DEA has produced no evidence that any of Bockoff’s patients overdosed, became addicted or harmed in any way while under his care. The 80-year old Bockoff has practiced medicine for over 50 years in California, and according to the state medical board has no prior record of disciplinary action or complaints.

Bockoff is appealing his suspension to a DEA Administrative Law Judge, but a final ruling could be months away. It would be unusual for the courts to intervene and give his patients a seat at the table, but many consider it a life-and-death issue. In their eyes, the “imminent danger” is from the DEA, DOJ and their attorneys.

“I’d like to ask Ms. Gay if this was willful ignorance or does her affluent position afford her an alternate to my reality?” said Parker. “It’s offensive saying that it’s a patient’s fault for not trying hard enough.”

Is Cannabis Harmful During Pregnancy and Adolescence?

By Hilary Marusak, Wayne State University

Cannabis is a widely used psychoactive drug worldwide, and its popularity is growing: The U.S. market for recreational cannabis sales could surpass $72 billion by 2023.

As of early 2023, 21 U.S. states and the District of Columbia have legalized cannabis for recreational use for people age 21 and up, while 39 states plus the District of Columbia have legalized it for medical use.

The growing wave of legalization and the dramatic increase in cannabis potency over the past two decades have raised concerns among scientists and public health experts about the potential health effects of cannabis use during pregnancy and other vulnerable periods of development, such as the teen years.

I am a developmental neuroscientist specializing in studying what’s known as the endocannabinoid system. This is an evolutionarily ancient system found in humans and other vertebrates that produces natural cannabinoids such as THC and CBD.

Cannabis and its constituents interact with the body’s endocannabinoid system to product their effects. THC and CBD are the most commonly known cannabis extracts and can be synthesized in a lab. My lab also studies the risks versus potential therapeutic value of cannabis and cannabinoids.

Potential Health Risks

People often assume there’s no risk when using cannabis or cannabinoids during vulnerable periods of life, but they’re basing that on little to no data. Our research and that of others suggests that cannabis use during pregnancy and adolescence can present myriad health risks the public should be aware of.

Data shows that many people who use cannabis continue to do so during pregnancy. But there are health risks. More and more pregnant people are using cannabis today compared with a decade ago, with some studies showing that nearly 1 in 4 pregnant adolescents report that they use cannabis.

Many cannabis-using people may have not known they were pregnant and stopped using when they found out. Others report using cannabis for its touted ability to ease pregnancy-related symptoms, like nausea and anxiety. However, studies do not yet confirm those health claims. What’s more, the potential harms are often downplayed by pro-cannabis marketing and messaging by dispensaries, advocacy groups and even midwives or doulas.

In addition, physicians and other health care providers often are not knowledgeable enough or don’t feel well equipped to discuss the potential risks and benefits of cannabis with their patients, including during pregnancy.

While research shows that most people who are pregnant perceive little to no risk in using cannabis during pregnancy, the data show there is clear cause for concern. Indeed, a growing number of studies link prenatal cannabis exposure to greater risk of preterm birth, lower birth weight and psychiatric and behavioral problems in children. These include, for example, difficulties with attention, thought, social problems, anxiety and depression.

Cannabis and Brain Development

When cannabis is inhaled, consumed orally or taken in through other routes, it can easily cross through the placenta and deposit in the fetal brain, disrupting brain development.

A recent study from my lab, led by medical student Mohammed Faraj, found that cannabis use during pregnancy can shape the developing brain in ways that are detectable even a decade later.

We used data from the National Institutes of Health Adolescent Brain Cognitive Development Study, which is the largest long-term study of brain development and child and adolescent health in the U.S. It has followed more than 10,000 children and their families from age 9-10 over a 10-year period.

Through that analysis, we linked prenatal cannabis exposure to alterations in functional brain networks in 9- and 10-year-old children. In particular, prenatal cannabis exposure appeared to disrupt the communication between brain networks involved in attentional control, which may explain why children who were exposed to cannabis in utero may develop difficulties with attention or other behavioral issues or mental disorders as they develop.

While alcohol abuse has steadily declined among adolescents since 2000 in the U.S., cannabis use shows the opposite pattern: It increased by 245% during that same period.

Data reported in 2022 from the Monitoring the Future survey of over 50,000 students in the U.S. found that nearly one-third of 12th grade students reported using cannabis in the past year, including cannabis vaping. Yet only about 1 in 4 12th grade students perceive great harm in using cannabis regularly. This suggests that many teens use cannabis, but very few consider it to have potential negative effects.

Research shows that the adolescent brain is primed to engage in high-risk behaviors such as experimenting with cannabis and other substances. Unfortunately, owing to ongoing brain development, the adolescent brain is also particularly susceptible to the effects of cannabis and other substances. Indeed, many neuroscientists now agree that the brain continues to develop well into the second and even third decade of life.

In line with this vulnerability, research shows that, relative to those who did not use cannabis during adolescence, those who started using it during adolescence are at increased risk of developing depression, suicidal ideation, psychosis and reductions in IQ during adolescence and adulthood. Neuroimaging studies also show residual effects of adolescent cannabis use on brain functioning, even later during adulthood.

‘No Amount Is Safe’

Despite common misconceptions that cannabis is “all natural” and safe to use during pregnancy or adolescence, the data suggests there are real risks. In fact, in 2019, the U.S. surgeon general issued an advisory against the use of cannabis during pregnancy and adolescence, stating that “no amount … is known to be safe.”

Cannabis may be harmful to the developing brain because it disrupts the developing endocannabinoid system, which plays a critical role in shaping brain development from conception and into adulthood. This includes neural circuits involved in learning, memory, decision-making and emotion regulation.

While much of this research has focused on cannabis use, there is also other research that comes to similar conclusions for THC and CBD in other forms. In fact, although CBD is widely available as an unregulated supplement, we researchers know almost nothing about its effects on the developing brain. Of note, these harms apply not only to smoking, but also to ingesting, vaping or other ways of consuming cannabis or its extracts.

In my view, it’s important that consumers know these risks and recognize that not everything claimed in a label is backed by science. So before you pick up that edible or vape pen for stress, anxiety, or sleep or pain control, it’s important to talk to a health care provider about potential risks – especially if you are or could be pregnant or are a teen or young adult.

Hilary Marusak, PhD, is an Assistant Professor of Psychiatry and Behavioral Neurosciences at Wayne State University. She directs the WSU THINK Lab, which focuses on pediatric anxiety and understanding the impact of childhood trauma on neural development. Dr. Marusak receives funding from the National Institutes of Health and the State of Michigan.   

This article originally appeared in The Conversation and is republished with permission.

Monitor Helps Improve Pain Levels During and After Surgery

By Pat Anson, PNN Editor

With an increasing number of surgery patients being sent home from U.S. hospitals with little more than Tylenol for pain relief, it’s more important than ever to make sure that surgeries and post-operative recovery periods are as pain-free as possible.

A medical device that monitors anesthetized patients during surgery may do just that, letting doctors know when they should reduce or increase the use of pain medication. The PMD-200 monitor has been available in Canada, Europe and the UK for several years, but was just recently cleared by the FDA for marketing in the U.S.

Made by Medasense Biometrics, a medical technology company based in Israel, the monitor measures a patient’s nociception level (NOL) – their physiological response to pain -- through the use of a wearable finger probe that tracks their heart rate, blood pressure, sweat and movement. The monitor then uses machine learning to analyze the data and gauge a patient’s pain. Since fully anesthetized patients can’t speak or communicate during surgery, their NOL level essentially does the talking for them.

“We call it the signature of pain,” says Galit Zuckerman-Stark, CEO of Medasense. “During the surgery, if a physician sees the (NOL) number rising for more than one minute, he or she needs to consider giving more pain medication.”

The reverse is true as well. Surgeons may find that a patient doesn’t need as much medication as someone else who is more sensitive to pain. The goal is to provide individualized care -- the right dose at the right time for each patient.  

“We are very, very different from each other, both in terms of how the body responds to pain and also to medication. There can be a major difference between one patient and another,” Zuckerman-Stark told PNN.

In clinical studies in Europe, Medasense found that patients who had their opioid use guided by NOL were 70% less likely to have severe pain in the first 90 minutes after surgery. This was attributed to more objective and personalized opioid dosing during the surgery itself. 

Less pain during and immediately after surgery means patients will need fewer pain relievers when they are sent home – a key objective for many U.S. hospitals that are under pressure to reduce their opioid use.

"The anesthesia community has needed a technology like NOL for a long time," says Frank Overdyk, MD, a South Carolina anesthesiologist and consultant for Medasense.

"We have devices that monitor depth of anesthesia, we have TOF cuffs to check for patient movement, but the missing piece of the puzzle is a way to monitor the effect of the opioid or opioid sparing analgesia. Relying on patient's heart rate and blood pressure is neither specific nor sensitive enough to pain. This technology as an adjunctive to clinical judgment will provide a window into the patient's nociceptive state during surgery so we can personalize the way we administer analgesia, improving the patient's recovery."

This promotional video was produced by Medasense to help explain how the PMD-200 works:

In recent years, the amount of opioids prescribed in the U.S. for post-operative pain has plummeted, falling by 50% since 2017.

While many hospitals now send patients home from minimally invasive surgeries with acetaminophen or even gabapentin, most Americans still believe that opioids are necessary for pain after surgery. A 2021 Harris Poll found that 65% are more concerned about pain relief after surgery than opioid addiction and 60% prefer strong prescription painkillers over OTC pain relievers.

A Window Into the Impossible: A Pain-Free Life

By Cynthia Toussaint, PNN Columnist

I recently experienced the miracle of living pain-free for a while, after 40 years of body-wide Complex Regional Pain Syndrome. I was astonished by what it felt like and what I learned about myself.   

In November, I had a serious cancer treatment complication, one that landed me in the hospital and forced me to suspend care. After stabilizing and returning home, I had to taper down from a course of high-dose prednisone, a corticosteroid, over eight weeks.     

The multitude of prednisone side effects were worse than I imagine hell to be, save one: my pain was gone. Okay, not gone-gone, but so damn near I forgot about it.

Yeah, you read that right. After decades of burning, radiating, life-upending, soul-crushing, never-ending, can’t-do-another-moment pain, it just wasn’t a thing anymore.     

Over the last decade or so, my life partner, John, has asked me on occasion, “What would you do if your pain just went away?”

That question pissed me off because pain has robbed me of my dreams. How dare it go away now, I would think, after destroying my life! Ebbing into my later years, I knew it was too late to reclaim what was gone. I decided it would hurt too damn much psychologically to lose my physical pain.  

I was stone-cold wrong. When the prednisone kicked in, it was nothing short of heavenly bliss to be without my constant agony. At first, it felt as though much of my lower body had been amputated, but in a good way. Poof, like magic, the tonnage of pain and heaviness were gone. Also, to my surprise, I had zero emotional fall-out.

I marveled in the miracle of standing, as this ability had been absent for many decades. I’ve spent countless hours, weeks and years staring at people in public, trying to figure out how they could stand and shift their weight without apparent torment or thought. After becoming a “shifter” myself while on prednisone, I had a clear, three-word answer: It doesn’t hurt.   

Not using my wheelchair was a trip because people stopped treating me like a child. Rather than literally gazing down with pity, they looked me straight on, eye level and all. They even asked me questions about myself, rather than disregarding the invalid while turning to John. That, in itself, was a game-changing reality, and I started to smell the sweet possibility of independence again.       

Every moment without pain was a miracle, blowing open my mind with new ideas and long packed away possibilities. For the first time, I seriously thought researchers would someday find a cure for CRPS. I mean, if they could switch much of my pain off virtually overnight, clearly science was on the edge of making this stick permanently.

If only.

Here’s the other side of the story I alluded to earlier. When my pain went away, it cruelly coincided with the most torturous time of my life. The price of high-dose prednisone was, for me, an existence worse than pain. I was in and out of psychosis, sleeping three to four hours a night with an irregular, pounding heartbeat, and a thousand other little shop of horrors. With that onslaught, my spirit broke. Add the perils of aggressive cancer and the fallout of a serious treatment complication, and the torture was just too much.

On New Year’s Eve, my 62nd birthday, I told God that if it was my time, I was ready to go. I didn’t think Cynthia was ever going to come back. “Please, please make my suffering stop,” I begged.

To my surprise, and most I know, I clawed my way back after completely tapering off the prednisone. My new miracle has me living in gratitude, despite my old pain rushing back with a vengeance, leaving me with a GOAT of a pain flare. I writhe through much of my days and nights, feeling the burning hatchet sear my joints. But, dammit, I’m me again, and, like all flares, this too shall pass.      

Thankfully, I’m strong enough to be back on chemo as the benefits of self-care are once again paying off in spades. Adding to the good news, my recent CT/PET scan came out negative. “No Evidence of Disease” to be precise! These days when I pray, I don’t ask God to take me, but rather to keep me on this glorious earth.             

I got a glimpse into the other side, the miracle of being pain-free. But the cost of losing me was too high. Heck, science tells me I’d no longer care about my pain if I got a lobotomy. No thanks.

I’m back to not wasting precious energy speculating about a possible cure. If it comes, fantastic, but I have no expectations, and accept and embrace the reality of what is right now.

Though my pain is often wretched and dark, I long ago embraced it as part of my authentic self. And to stay true to one’s self, there sometimes comes a great cost.

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

Tight Rx Opioid Supply Causing Shortages of Oxycodone and Hydrocodone

By Pat Anson, PNN Editor

At least three U.S. drug companies have reported shortages of oxycodone, the latest sign that efforts to limit the supply of opioid pain medication have gone too far and are harming patients.

On March 17, the American Society of Health-System Pharmacists (ASHP) added immediate release oxycodone to its nationwide list of drug shortages, with shortages of 5, 15, 20 and 30 mg tablets being reported by Amneal, Camber and Rhodes Pharmaceuticals. Other drug companies still have oxycodone tablets of various doses available, according to ASHP.

Amneal and Rhodes did not provide a reason for their shortages, while Camber told ASHP it was “awaiting DEA quota approval for active ingredient,” which presumably is oxycodone. All three companies, which specialize in making generic drugs, said the tablets were on back order.

“We have been following up on some reports of these shortages and have recently added immediate-release oxycodone tablets to our shortage database,” said Michael Ganio, PharmD, Senior Director of Pharmacy Practice and Quality at ASHP.

In addition to the oxycodone shortage, Ganio told PNN there were anecdotal reports of hydrocodone medications being in short supply.

“We have not heard back from all manufacturers of hydrocodone/acetaminophen products, but some have reported availability while others have reported some package sizes are not currently available,” Ganio said in an email. “We don’t have state-by-state data, so unfortunately I cannot offer any insight on specific (pharmacy) chains or states. However, it’s common with shortages that manufacturers with product available will limit sales to existing purchasers. That can mean products may not be available depending on previous purchase history from those pharmacies.”

(Update: On May 26, the ASHP added hydrocodone/acetaminophen tablets made by several generic drugmakers to its list of shortages.)

The ASHP’s list of shortages usually mirrors the drug shortage list maintained by the Food and Drug Administration, but the federal agency does not currently list either oxycodone or hydrocodone tablets as being in short supply.

‘It’s Gotten Worse’ 

Pain patients have complained for years about pharmacists being unable to fill their opioid prescriptions, usually claiming they were “out of stock” or awaiting a delayed shipment. But the problem seems to have become more widespread in recent months.

“I've gone through shortage just this month for oxycodone yet again. I've also had shortage for morphine in the past,” said Michelle Farrell, who lives in Arizona. “My normal pharmacy said it was due to restrictions in place by the manufacturer this month. They were limiting the distributor and on down the (supply) chain.” 

After several days delay, Farrell was able to get her oxycodone prescription filled at another pharmacy.

A woman in Orange County, California said her CVS pharmacy was out of oxycodone for months.

“I have gone 4 months (fills) of an alternative medication because 10 mg oxycodone 10-325 has been completely out of stock at my home CVS store, as well as stores within a 20 mile radius. Yesterday was the first time my pharmacy could fill my prescription. Thank god. It is destabilizing having to be forced off your stable medical regimen,” she said in an email.

A woman in Melbourne, Florida recently told PNN she had to visit several pharmacies to get a prescription filled for hydrocodone. She needs pain medication for spondylarthritis and fibromyalgia. 

"I called CVS about picking up my medicine and I was told there is no hydrocodone available anywhere, it's with the manufacturer and had been out a month. Their pharmacist said he has no idea when they will be available again," said Kristina, who asked that we not use her last name. 

“I called a different CVS and she said the same thing, it's a national shortage, had been for about 3 weeks…. I was told there were 3 pills of 5mg hydrocodone within a 20-mile radius of (area code) 32926.”

CVS did not respond to a request for comment. Neither did the Florida Department of Health or the Florida Board of Pharmacy.

Kristina was eventually able to get her prescription filled, but only after her doctor got around the problem by increasing her dosage to 7.5 mg tablets of hydrocodone, which were available. Ironically, the manufacturer of those tablets was Amneal, one of the companies now reporting shortages of oxycodone.

What can a patient do when faced with a shortage? The ASHP recommends sharing as much information as possible with pharmacists about their medical history.

“The pharmacist can typically talk to the prescriber to find an alternative based on what products are available. However, if the medication is a Schedule II controlled substance, transferring prescriptions between pharmacies is not allowed. If another pharmacy has a product available, the prescriber will have to send a new prescription for the medication,” said Ganio.

“All of this sets up a challenging dynamic of doing double work, especially when pharmacies are experiencing some staffing shortages. We know that drug shortages can be frustrating for patients, and they can also impact care, which is why ASHP is working to push for transparency and resiliency in the system to avoid these situations in the future.”

Likely Reasons for Shortages

There are several possible reasons for the shortages. One is ongoing problems in the drug supply chain caused by the COVID-19 pandemic. The U.S. still relies heavily on foreign sources for many drugs and their active ingredients, a situation a U.S. Senate report this week called an “unacceptable national security risk.”   

Another reason is aggressive cuts in the opioid supply by the Drug Enforcement Administration. Since their peak in 2013, DEA production quotas for drug manufacturers have fallen by 65% for oxycodone and 73% for hydrocodone. The DEA says it’s tightening the supply to prevent diversion, even though its own estimates show that less than 1% of prescription opioids are used by someone they are not intended for.  

Third, the DEA and the Department of Justice have been aggressive in going after doctors who prescribe opioids in high doses, which made many physicians leery of going to prison or paying steep fines, which one doctor likened to extortion. Rather than risk their livelihoods and freedom, some doctors stopped prescribing opioids. 

The fourth likely reason for the shortages is opioid litigation. As The New York Times explained in a recent article, three large drug distributors reached a $21 billion settlement with 46 states last summer, requiring them to impose strict limits on the pharmacies they do business with. Pharmacies are capped in the amount of opioids and other controlled substances they can dispense in any given month, regardless of patient needs. A unusually large order for opioids could result in a pharmacy getting red-flagged and the order cancelled.  

‘Pendulum Swung Too Far’

The end result of all these efforts is that opioid prescribing in the U.S. has fallen by nearly 50 percent, even as drug deaths continued to climb to record levels, fueled primarily by street drugs made with illicit fentanyl. 

“It seems like the pendulum has swung too far in the other direction, where people deserving and people needing controlled substances are unable to access them,” said Colin Banas, MD, Chief Medical Officer for DrFirst, a healthcare technology consultant.  

A recent survey of 400 patients by DrFirst found that one in four (27%) had run out of medication while waiting for their prescription to be renewed. Many had to contact their pharmacy or doctor more than once to get their prescription renewed. 

Banas is concerned that DEA plans to reimpose “guardrails” on prescribing that were suspended during the pandemic will undermine telehealth and make it even harder to get controlled substances. The DEA’s proposed rules, which many consider confusing, will require patients to have an in-person meeting with a provider before being prescribed a Schedule II controlled substance like oxycodone. 

“If I need to see a pain specialist and I’m in a very rural area, and the closest doctor is 90 miles away… there’s some very legitimate concern where we might be cutting those patients off by requiring the in-person visit,” Banas told PNN. 

One of the twisted ironies of the oxycodone shortage is that 30 mg tablets that are so difficult to get from a U.S. pharmacy are widely available on the black market — but they are counterfeit. Known on the street as M-30s or Mexican Oxy, the blue pills look just like the real thing, but are made with a potentially lethal dose of illicit fentanyl. Some Mexican pharmacies are selling them to unsuspecting U.S. tourists who can’t get them at home.

Finding a New Ketamine Provider

By Barby Ingle, PNN Columnist 

For me, treatment with ketamine was life giving and lifesaving. I started ketamine infusion therapy in 2009, flying back and forth to Pennsylvania for treatment at Drexel University Hospital. My doctor there, neurologist Robert Schwartzman (now deceased), did much of the initial research on ketamine as a treatment for Reflex Sympathetic Dystrophy (RSD), also known as algoneurodystrphy or complex regional pain syndrome (CRPS).

I was on the ground floor with ketamine as a pain treatment, and helped bring it to Arizona with providers like Drs. Steven Siwek, Eric Cornidez, Natalie Strand at the Pain Centers of Arizona and Freedom Pain Hospital, to name a few.

One of my favorite places to go was Ketamine Wellness Centers (KWC), which operated a nationwide chain of ketamine clinics until it abruptly shut down last week. I knew many of KWC’s staff members at their Arizona and Florida offices.

I was patient zero for KWC. I remember sitting with Gerald Gaines (now deceased) and Kevin Nicholson, the current CEO, and sharing with them how ketamine changed my life. I asked them to look into ketamine and start a clinic. They did. Kevin built up the business and eventually opened 13 clinics in 10 states before recently merging KWC with another company, Delic Holdings.

The merger hasn’t worked out due to financial issues. The clinic closures significantly affect access to care for chronic pain, depression and mental health in the communities they served. KWC was one of the only places that treated both pain and depression, using ketamine in conjunction with other modalities.

As a patient, I have been through clinic closures before and providers stopping their ketamine treatment for various reasons. Upon reflection, I have been to more than 10 clinics and had close to 20 providers since starting in 2009. It is scary to think that thousands of patients like me have to start the process all over again, but having been in this situation before, I know it can work out.

My message to the former patients of Ketamine Wellness Centers is that there is hope. It may be harder depending on where they live, but other options exist. I plan on getting the same treatment that I have since 2009. I was asked how to go about finding a new ketamine provider by another patient. My response is this:

1. Know your ketamine protocol and how it works for you

2. Call ahead of your consultation and say, “This is what I had. This is what I want. Can you do it?”

3. Don't settle for less. There are many ketamine providers now. Find the one that is a fit for you.

Getting this treatment is very personal, and you need a feeling of safety, comfort and trust. It is not just about getting your IV hooked up and going from there. You should be exploring your options, just like you did the first time with KWC.  Now you have experience and know what ketamine therapy is like. 

When I got this treatment for the first time from Dr. Schwartzman, my entire life changed for the better. I went into the hospital in a wheelchair. Seven days later, I walked out. It's helped with dystonia, strength, balance, coordination and more. The most significant area of success for me was the burning fire pain. I strive never to have that pain again. Receiving ongoing treatments helps me live with my daily chronic pain issues. 

I received my latest infusions at the Ketamine Wellness Center in Tucson a few weeks ago. At the time, I had no idea that KWC was about to shutdown. I know it's a shock to all of us former patients, and I'm worried about the employees and where they will go. Their knowledge and experience will be welcomed at other clinics.

Part of the problem with KWC is that they expanded too quickly when they merged with Delic. Ketamine treatment is not a cash cow for providers, but they can make a good living and help thousands of patients who rely on ketamine to relieve their pain, be it mental or physical.

I hear that there will be lawsuits due to KWC’s abrupt closure and lack of notice, the inability of some patients to receive their medical records, employees who have not been paid correctly, and other challenges that have come to light. This will all be sorted out. It will take time, but we already know it is worth the time, effort and energy to ensure we can receive the life-giving treatments. 

I still need to receive my medical records from KWC, but I have all of my records from other providers and have changed my treatment protocol. I am already in talks with new providers. I don't have time to wait around.

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts. You can follow her at www.barbyingle.com   

How Doctors Can Make Complex Pain Conditions Worse

By Madora Pennington, PNN Columnist

“You are teaching your child to be in pain, just like you. This is caused by anxiety, and she is learning it from you,” the emergency room doctor told Sondra Benson (not her real name) about her 15-year-old daughter.

Benson and her daughter both have Ehlers-Danlos Syndrome (EDS), a condition that causes ligaments, cartilage and other connective tissue to be fragile. Pain and fatigue are major complications of EDS, and many who have it suffer from migraines. Benson’s daughter was in the ER because she was having a hemiplegic migraine, a severe type of migraine which causes paralysis on one side of the body.

That night in the ER, the doctor’s orders were barbaric. He disregarded advice from the girl’s pediatric neurologist and refused to give her medication. Instead, he had her sit in a chair — not even in a hospital bed — and told her to “wait it out.”

Because Ehlers-Danlos is such a complex condition affecting many bodily systems, patients are often labeled as “difficult.” And when doctors mistreat them or even act punishingly towards them, it can make their health worse. For patients like the Bensons, these distressing, unproductive and hostile interactions tend to happen over and over again.

The cumulative effect on EDS patients of such negative experiences has been termed “clinician-associated traumatization” in a recently published study in the journal Qualitative Research in Health. In interviews with 26 EDS patients, 89% said that clinicians had disrespected them and treated them unprofessionally. Another 92% said clinicians had invalidated them.

Patients treated this way become reluctant to seek medical care. They have classic PTSD symptoms, such as triggers, flashbacks, irritability and hypervigilance. They’re also left with psychological wounds. They doubt themselves, become fearful of doctors, and lose trust in the healthcare system. They’re also less likely to follow orders and stick to treatment plans.

‘They Don’t Believe Me’

After being denied appropriate medical treatment in the ER, Benson’s daughter now resists going to the doctor. “What’s the point?” she says. “They don’t believe me and aren’t going to help me.”

Undoing the damage from events like these is not easy or simple. Despite having therapy for her medical trauma and being on antidepressants, the teenager still struggles with her self-esteem.

The study by researchers at Indiana University’s School of Medicine is groundbreaking for showing that trauma can come from difficult medical appointments and counterproductive treatment. Traditionally, medical trauma has been described in limited ways, such as the anguish that comes from a sudden brush with death, like an accident or cancer diagnosis.

Trauma for a medically complex patient begins early and accumulates over time. The patient struggles with mysterious health problems and is unable to get a conclusive diagnosis. This may go on for years, as the patient sees specialist after specialist with no clear answers. Doctors may treat such patients with suspicion. That makes the patient doubt themselves and weakens their desire to seek answers and treatment.

Even when they get a correct diagnosis, patients may not fare better. The repeated disrespectful, humiliating and hurtful encounters with doctors whittles away at their confidence and sense of security.

“We have found that negative encounters lead to a breakdown in the patient–provider relationship, even when experiences are primarily of inadvertent slights or… insults and invalidations,” wrote lead author Colin Halverson, PhD, an investigator at Indiana University’s Center for Bioethics. 

“Repeatedly being dismissed as ‘exaggerating’ and ‘inventing symptoms’ causes patients to lose faith in the healthcare system and in their ability to assess and advocate for their own best interests. This results in anxiety about returning to specific clinicians and avoidance of healthcare settings altogether. Ultimately, this means that patients suffering from clinician-associated traumatization experience worse – but preventable – health outcomes.” 

The EDS patients interviewed for this study thought that the clinicians who had mistreated them were clueless about the harm they caused. Many believe that insufficient education in medical school about treatments for their disease brought out this behavior. Their lack of knowledge made them behave badly and arrogantly.  

Benson has come to the same conclusions from her own experiences and those of her daughter.  

“I think the medical profession could use some empathy classes and training on chronic, long term, with no cure illnesses,” she told me. “We overvalue doctors and give them god like complexes, so when they don't know the answer, they feel threatened and act foolishly.” 

Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. She graduated from UC Berkeley with minors in Journalism and Disability Studies. 

Apple Watch Can Predict Pain Levels

By Pat Anson, PNN Editor

You can monitor a lot of health conditions with an Apple Watch, everything from your heart rate and blood oxygen levels to fitness and sleep patterns. Researchers at Duke University have found the watch could also be useful in predicting pain levels in people with sickle cell disease (SCD).

In a small study recently published by JMIR Formative Research, Duke researchers used the watches to collect health data from 20 adults with SCD and used machine learning computer models to predict their pain scores.

SCD is a genetic disorder that causes red blood cells to form in a crescent or sickle shape, which creates unpredictable and painful blockages in blood vessels known as vaso-occlusive crises (VOCs). About 100,000 Americans live with SCD, primarily people of African or Hispanic descent.

Because VOC’s can lead to life-threatening infections, strokes and organ failure, knowing their intensity could lead to earlier treatment and save lives. VOCs are typically treated with pain medication and intravenous saline solutions to promote hydration.

The sickle cell patients in the study were all admitted Duke University’s SCD Day Hospital while experiencing a VOC and provided with an Apple Watch Series 3, which was worn for the duration of their visit. Data collected from the watch included their heart rate, heart rate variability and calorie consumption, which were then matched with pain scores and vital signs collected from their electronic medical records.

In all, a total of 15,683 data points were collected, which were then analyzed using three different machine learning techniques. The best performing one was the “random forest” model, which predicted pain scores with an accuracy of nearly 85 percent.

“The strong performance of the model in all metrics validates feasibility and the ability to use data collected from a noninvasive device, the Apple Watch, to predict the pain scores during VOCs,” wrote lead author Rebecca Sofia Stojancic, who works in the Sickle Cell Comprehensive Care Unit at Duke University Hospital. “It is a novel and feasible approach and presents a low-cost method that could benefit clinicians and individuals with sickle cell disease in the treatment of VOCs.”

The idea of using mobile health apps and wearable technology to predict pain scores isn’t a new one. The idea was first explored in 2019 by Duke researchers using a Microsoft Band 2 to collect data from sickle cell patients.

“The Microsoft Band 2 allowed easy collection of objective, physiologic markers during an acute pain crisis in adults with SCD. Features can be extracted from these data signals and matched with pain scores. Machine learning models can then use these features to feasibly predict patient pain scores,” researchers reported.

Could wearable devices be used someday to predict pain flares from other chronic health conditions? A handful of clinical studies have explored the use of smartphones, Fitbits and other devices to predict migraines and hospital readmissions for high-risk patients, but no results have been posted so far.

Algorithms Now Determine If You Get Medication

By Crystal Lindell, PNN Columnist

Did you know that secret algorithms are being used to determine whether your pharmacy is allowed to stock certain medications?

Algorithms are computer software programs designed to select, calculate and carry out certain actions – in this case the amount of opioids and other controlled substances that pharmacies can keep in stock to fill prescriptions with. And if an algorithm decides your pharmacy has used up its monthly allotment of a controlled drug, there’s almost no recourse for you as a patient.

The situation was recently brought into the spotlight by The New York Times article, “Opioid Settlement Hinders Patients’ Access to a Wide Array of Drugs.”

As The Times explains, the $21-billion opioid settlement brokered between the three largest U.S. drug distributors and 46 states includes a provision that forces the distributors to place strict limits on the drugs they supply to pharmacies. In addition to opioids, any medication labeled as a controlled substance is now subject to these restrictions, including Xanax, Adderall, muscle relaxants, and more.

“Before the settlement, pharmacists said, they could explain to a distributor the reason for a surge in demand and still receive medications past their limits. Now the caps appear to be more rigid: Drugs are cut off with no advance notice or rapid recourse. As a condition of the settlement, distributors cannot tell pharmacies what the thresholds are,” The Times reported.

So, like I said, secret algorithms are effectively deciding your medical treatment. And it’s not even based on you as an individual. It’s based on how many people in your region are taking the same medication.

Predictably, the situation is causing a lot of problems for a lot of people. The Times found that a number of groups have been affected, including:

1. “College students far from home trying to fill their Adderall prescription.”

2. “Patients in rural areas where it is customary to drive long distances for medical care.”

3. “Hospice providers that rely on local pharmacies for controlled substances.”

Let’s take a moment to truly absorb that last one. While the The Times used the term “hospice providers,” we all know what that actually means: hospice patients who are very sick or terminally ill.

So, it doesn’t even matter if you’re on your deathbed, you still might not get pain relief. And the decision for denial, to paraphrase how a pharmacist might explain it, is basically: “A bunch of your neighbors already got morphine, so you can’t have it.”

While the exact metrics used to deny shipments aren’t public, the drug distributors have addressed the issue on their websites, and explained how they’re tracking prescriptions.

“The algorithm will flag order lines of unusual size, frequency or pattern based on a pharmacy’s own order history or when compared to peers,” AmerisourceBergen explains. “Any order lines that are flagged by the algorithm will be automatically cancelled and reported.” 

Again, none of that is based on what any specific patient is experiencing.

All of this would be upsetting if it were only impacting opioid medication, but the fact that it’s been extended to other common prescriptions – that weren’t even part of opioid litigation -- is both enraging and scary.

Doctors do not give prescriptions for any controlled substances out easily, so if a patient is being prescribed any of the meds, then they need them.

Now, you may assume that at the very least, pharmacies are calling doctors once they hit these new thresholds so that the doctor can at least try to prescribe something else or send the prescription to another pharmacy.

You’d be wrong.

As the The Times reports:

“Psychiatrists in California were so alarmed by patients’ stories of unfilled prescriptions that they sent a survey to colleagues in December. They received reports of dozens of such problems, said Dr. Emily Wood, chairwoman of the government affairs committee of the California State Association of Psychiatrists.

Dr. Wood said that patients who take a stimulant for A.D.H.D. sometimes need anti-anxiety pills or a sedative at night to sleep — but that pharmacists now tell them they cannot have the combination.

“Pharmacists aren’t calling the doctors to work it out,” Dr. Wood said. “They’re just not filling the prescriptions.”

Pharmacists are being put in an impossible position, being forced to essentially serve as police agents without any say in what they’re enforcing. And it’s upsetting that the task of reaching a doctor to ask for a different prescription is now falling on patients with conditions like ADHD, a disorder that makes tasks like that especially difficult.

I couldn’t find much about how these algorithms were created, so it’s unclear if doctors were involved in creating them. But one thing we do know is that your personal doctor definitely wasn’t involved. And your personal needs were not a factor.

Your medical treatment is now being determined by drug distributors, state attorneys general, lawyers and computers — none of whom have ever met you or your doctor.

The thing that most people in the United States don’t seem to understand — but may be about to learn — is that to the DEA anyone who uses a controlled substance above a certain level must be abusing them. This is evidenced by the fact that this policy is even leading to restrictions for hospice patients and none of the parties involved are trying to fix that.

As the The Times reports, “Although the tighter restrictions have been in place for months, the government has offered little remedy for patients.”

It’s easy to believe the myth that restrictions on controlled substances are there to help keep us safe. That they are only meant to keep these medications from people who might misuse or abuse them.  But how is it safe to make a patient quit Adderall cold turkey, even when they have a valid prescription for it? How is it safe to tell rural patients that they need to drive hundreds of miles to another pharmacy? How is it safe to deny pain relief to a dying cancer patient? It’s not.

Everything about this situation is so inhumane. We’ve had incredible medical breakthroughs and finally have medications available for health conditions once considered untreatable. But it doesn’t matter. The masses still can’t have them. We must continue to suffer for whatever time we have left.

And for what? What is the reward for our suffering? Apparently, just more suffering.

Crystal Lindell is a freelance writer who lives in Illinois. After five years of unexplained rib pain, Crystal was finally diagnosed with hypermobile Ehlers-Danlos syndrome. She and her fiancé have 3 cats: Princess Dee, Basil, and Goose. She enjoys the Marvel Cinematic Universe, Taylor Swift Easter eggs, and playing the daily word game Semantle.