Understanding the Difference Between Prescription Fentanyl and Illicit Fentanyl

By Roger Chriss, PNN Columnist

The opioid overdose crisis is now being driven by fentanyl. But misunderstandings over what fentanyl is, where it comes from, how it is used and why have become so pervasive that they plague discourse and debate about the crisis. News reports about “fentanyl overdose deaths” appear almost daily.

October saw a particularly tragic death. As reported by the Daily Courier in Prescott, Arizona, a 14-year-old high school student died of an overdose after taking what investigators suspect was a counterfeit pill “laced with the potent narcotic painkiller fentanyl.”

The tragedy of this death cannot be overstated. Nor can thousands of other overdose fatalities caused by fentanyl. But the nature of the drug needs to be better understood if we are to prevent such deaths moving forward.

Fentanyl is not one drug. It is better thought of as a family of synthetic opioids that are structurally similar, and includes sufentanil and remifentanil. These are pharmaceutical fentanyls, used clinically as anesthetics and essential for medical procedures such as open heart surgery.

Collectively, these drugs are part of a super-family known as fentanyl analogues. There are dozens of such drugs. Some are compounds developed by pharmaceutical companies for legitimate medical use, and others are manufactured illegally for use as street drugs. These forms of fentanyl are commonly referred to as “illicitly manufactured fentanyl” by government agencies like the CDC. The DEA has classified “fentanyl-related substances” as Schedule I controlled substances, meaning they are illegal to manufacture, distribute or possess.

To make this even more complicated, the fentanyl drug carfentanil is used legally in the U.S. as a tranquilizer for elephants and other large animals. The DEA authorizes production of a minute quantity of carfentanil for veterinarians every year. But illicit carfentanil from overseas occasionally shows up on the street and causes fatal overdoses.

Further muddying matters is the new fentanyl-like street drug isotonitazene, which is known colloquially as “iso.” It is “fentanyl-like” in its risks and harms, but is not technically a fentanyl analogue. “Iso” is instead related to etonitazene. Neither of these drugs has any recognized medical use in humans.

Risks Are Very Different

In other words, there is a vast gulf between pharmaceutical fentanyl and illicitly manufactured fentanyl. The former is a tightly controlled Schedule II prescription medication, approved for use in hospitals and to treat breakthrough cancer pain. The latter is an illegal substance cooked up in illicit labs that is often added to heroin or used to make counterfeit pills, which are then sold on the street or online.

This distinction is critical for understanding the opioid overdose crisis. The risks of a prescription opioid like fentanyl when given for medical use to a legitimate patient are very different from the risks of an illicit opioid being used non-medically by a random street buyer. Importantly, the risks for medical use can be addressed and managed. The risks of illicit use are much harder to deal with and often prove fatal.

The distinction also leads to confusion. The abundance of fentanyl on the street is rarely a result of diversion, and is unrelated to the supply of pharmaceutical fentanyl. These are different drugs, much as the cocaine nasal spray recently approved by the FDA as a local anesthetic is completely separate from the cocaine bought on the street. Pain experts are now pushing for a new classification for illicit fentanyl analogues, in the hope of clarifying this difference.

But fentanyl has so saturated the street drug market that more than a name change will be needed. As Ben Westhoff explains in the book “Fentanyl, Inc.”, preventing future opioid deaths will require “sweeping new public-health initiatives, including treatment programs and campaigns to educate everyone, from users and medical providers to teachers and police, about the drugs’ dangers.”

Understanding the difference between pharmaceutical fentanyl and illicitly manufactured fentanyl is an essential step in the effort to reduce overdose deaths.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research. 

DEA Expanding Surveillance of Prescription Drug Data

By Pat Anson, PNN Editor

The U.S. Drug Enforcement Administration is making plans for a major expansion of its monitoring of prescriptions for opioids and other controlled substances, with the goal of identifying virtually every prescriber, pharmacy and patient in the country that shows signs of drug diversion or abusing their medication.

In a request for proposal (RFP) made in early September, the DEA asked software contractors to submit bids for the creation of a nationwide data system that would track “a minimum of 85 percent of all prescriptions” for Schedule II through V controlled substances. The RFP was first reported by the website Filter.

Critics say the surveillance program will have a chilling effect on many healthcare providers, who are already fearful of being flagged by law enforcement for prescribing and dispensing opioids and other medications to patients suffering from pain and other illnesses.  

“This RFP illustrates that the DEA, and U.S. Department of Justice more broadly, remains fixated on monitoring and scrutinizing the medical decisions of licensed health professionals while illegal fentanyl and heroin contribute to two-thirds of opioid-involved drug poisonings in the U.S.,” says attorney Michael Barnes, who is managing partner at DCBA Law & Policy, a law firm that advises healthcare providers.

“DEA agents have no business second guessing health care providers’ decisions on medical need and patient care. That’s a job for state licensing boards – and only when there is a valid complaint to investigate.”

‘Unlimited Access’ to Prescription Data

Hundreds of medications would be covered under the DEA’s surveillance program, including drugs used to treat pain, opioid use disorder, anxiety, and attention deficit hyperactivity disorder (ADHD).  Under the program, DEA investigators would have “unlimited access” to prescription data compiled over the last five years, including the names of prescribers and pharmacists, types of medication, quantity, dose, refills and forms of payment.

The names of patients would be encrypted, but if investigators suspect a medication was being abused or diverted, they could get a subpoena to quickly identify the patients involved.

“The subpoena process would be that we would generate a DEA Administrative Subpoena and send it to you for the unmasking of specified patients. The data provider would then need to respond to us providing the unmasked patient information that was requested within three business days,” the DEA said in response to a contractor who inquired how the subpoena process would work.      

Asked how many DEA investigators would have access to the prescription data, the agency said there could be over a thousand.

“We would start with 1,100 users and would renegotiate if more were needed. It is unlikely that 1,100 users will all access the system concurrently but is hypothetically possible in the future,” the agency replied.

Why the DEA is seeking to expand its monitoring of opioid prescriptions is unclear. In recent years, the number of prescriptions has fallen by about a third and the DEA itself estimates that less than one percent of legally prescribed opioids are diverted.

Bypassing PDMPs

State-run prescription drug monitoring programs (PDMPs) already track much of the information DEA is seeking, but law enforcement access to the data usually requires an active investigation or warrant – no data mining or fishing expeditions allowed. To maintain patient privacy, some states prohibit sharing prescription data with federal or out-of-state law enforcement agencies. Last year, the DEA had to sue Colorado to get access to the state’s PDMP data.

The DEA’s plan would bypass these privacy safeguards and effectively create a national PDMP for law enforcement. The agency would even be allowed to share some prescription data with unnamed “outside agencies and/or organizations without prior review by the Contractor.”      

The DEA did not respond to multiple requests for comment. In the RFP, the agency said it was required by law to maintain “comprehensive, detailed, accessible, and timely prescription, pharmacy, and prescriber information.”

Much of the data mining the agency is planning appears to go beyond the prescription data that is currently covered by PDMPs.  For example, the DEA wants to know the distance patients travel to see their doctors and pharmacies; whether patients living at the same address are getting the same drugs; whether a patient pays in cash for their medications; and whether a patient is getting a combination of opioids and benzodiazepines to treat their pain and anxiety.

“This DEA program will increase the fear associated with prescribing and dispensing controlled medications, making it even more difficult for people with pain, opioid use disorder, anxiety, insomnia, and ADHD to access individualized treatment. More such patients will be left in despair. It’s as though the federal government is unaware or does not care that the U.S. is in the midst of a suicide epidemic,” Barnes told PNN. 

‘Appalling for People’s Health’

The software contractor is also expected to provide DEA with a list of top prescribers and pharmacies that are writing and filling prescriptions for fentanyl, oxycodone, hydrocodone, buprenorphine and other opioids. The inclusion of buprenorphine is troubling to substance abuse treatment experts, because it is a primary ingredient of Suboxone. 

“The impact of including buprenorphine will be appalling for people’s health,” said Dr. Hannah Cooper, the chair of substance use disorder research at Emory University. Cooper fears the DEA surveillance program would make doctors and pharmacies reluctant to supply Suboxone to patients who need addiction treatment. 

“The idea that patient-level data is available to the DEA is quite frightening. We don’t want to make people worry that their decisions will be monitored by this highly punitive federal agency,” Cooper told Filter. “If you’ve been inhabiting a space where you’ve been persecuted by the federal government for some time, and they now have access to your private medical information, there will be tremendous consequences for population health and health equity.”

“This program will undoubtedly decrease the prescribing of controlled medications, including buprenorphine for opioid use disorder,” said Barnes. “Why in the world would the federal government, in the midst of a worsening drug-poisoning epidemic, discourage the prescribing of a medication to treat opioid use disorder and prevent opioid poisonings?”

The DEA deadline for receiving proposals from software contractors was October 20. No contract awards have been announced. The surveillance program could begin as early as December 1, 2020 and continue for a minimum of one year, with an option for up to four years. The potential cost of the program has not been disclosed.

Pilot Study Finds Green Light Therapy Improves Fibromyalgia Symptoms

By Pat Anson, PNN Editor

Fibromyalgia patients exposed to green light therapy had significant improvements in their pain, sleep and quality of life, according to a new pilot study published in the journal Pain Medicine.

The small clinical trial by researchers at the University of Arizona is the first to explore the benefits of green light in treating fibromyalgia symptoms. Previous studies have focused on green light therapy as a treatment for migraine headaches. Green light is believed to have a calming effect on the brain and causes less eye strain.  

Twenty-one adult patients with fibromyalgia being treated at the university’s chronic pain clinic were enrolled in the study. They were exposed to green light-emitting diodes (GLED) for one to two hours daily for 10 weeks. While undergoing treatment, patients were asked to avoid all other sources of light, including computers, smartphones and television, but encouraged to engage in other activities such as reading and listening to music, and to avoid falling asleep.

“To our knowledge, this one-way crossover design efficacy-study clinical trial is the first description of a successful implementation of GLED exposure as a therapy to manage fibromyalgia pain without any reported side effects. The patients enrolled in this study reported significant reduction in their overall average pain intensity, frequency, and duration after GLED treatment,” wrote lead author Mohab Ibrahim, MD, an associate professor in the Departments of Anesthesiology and Pharmacology at UArizona College of Medicine-Tucson. 

In addition to less pain, patients also reported better mood and sleep, and improvements in their ability to work, exercise and perform chores. Eleven patients said they also reduced their use of pain medication, including opioids, while being exposed to green light.    

“GLED may be a safe and affordable method to manage fibromyalgia. We did not observe side effects in animal studies or in reports from our patients. The observed safety and efficacy, coupled with the simplicity of this method, merit further investigation and the design of a randomized clinical trial to fully investigate the role of GLED for fibromyalgia and possibly other chronic pain conditions,” researchers concluded. 

Fibromyalgia is a poorly understood disorder characterized by widespread body pain, fatigue, poor sleep and depression. Many patients report conventional treatments for fibromyalgia are ineffective or have unwelcome side effects. 

In an email to PNN, Ibrahim said he was conducting two more studies on the use of green light to treat other pain conditions, but was not ready to release his findings. He recently reported the results of a small study of green light as a preventative therapy for migraine. 

“Should anyone use green light products? The risk is low, but I still suggest people speak with their physicians first before attempting any therapy,” Ibrahim said.    

Light Sensitivity 

Although more research is needed to fully understand how green light therapy works, some commercial products are available to the public without a prescription.

One is a portable green light lamp made by Allay, a company founded by Harvard Medical School Professor Rami Burstein, PhD, who was the first researcher to discover that different colors in the light spectrum can affect light sensitivity – known as photophobia – among migraine sufferers.

Burstein learned that blue light (the light emitted by TVs and computer screens) can trigger migraines, while a narrow band of green light at low intensity can reduce the severity of migraine attacks.

“Green light has a calming effect because it reduces electrical activity (in the brain),” Burstein told PNN. “It is the only color of light that is associated with positive emotion and reducing anxiety. All other colors of light increase anxiety, irritability, being afraid, being scared, being angry, a whole host of negative emotions.”

Burstein and his partners asked lighting experts to design an affordable green light lamp that people can use at home. Initial estimates ran in the thousands of dollars, but they have since managed to reduce the cost to $150.

ALLAY IMAGE

“It is safe. It’s not invasive. It is inexpensive,” Burstein says. “Try it. Give it a month or two. If it doesn’t work, you can return it for free. No questions asked.”

Allay began selling the lamps in January with a money back guarantee. Of the 3,000 lamps sold so far, Burstein says less than 4 percent of customers have asked for their money back. He expects an updated version of the lamp to be available by the end of the year for less than $100.

Burstein says the lamp eliminates photophobia in nearly all migraine patients. He recommends that migraine sufferers use the Allay lamp one to two hours every day to reduce the frequency and severity of headaches.

Clarifying the New Definition of Pain

By Dr. David Hanscom, PNN Columnist

What is pain? We toss the word around a lot without really understanding – or defining -- what it actually means.

There are many different types and sensory levels of pain. A loud noise is uncomfortable. Bitter tastes are unpleasant. Ringing in your ears is more than annoying. Sometimes our feelings get hurt. Physical pain can be mildly irritating or crippling.

The way every living species evolved and survives is by processing these multiple types of sensory input and interpreting them as either safe or dangerous. Then its behavior is directed towards safety and reward, while also avoiding threat.

Short-term acute pain is a warning signal that indicates there is potential damage to a specific body part. Acute pain is necessary and protective. You might even call it a gift. People who are born without a pain system don’t often survive more than 10-15 years. They can’t sense danger. Tissues are destroyed and they die of infection.

But there is nothing useful about chronic pain. When a delicately balanced signaling system is out of kilter, it can no longer accurately interpret the environment. You become trapped by incredibly unpleasant sensations. Chronic pain may be one of the worst experiences of the human condition. It interferes with physical function, social interactions, and psychological well-being.

Recently, for the first time since 1979, the International Association for the Study of Pain (IASP) revised its definition of pain. This was made necessary by neuroscience research showing that pain could arise from sources other than physical tissue damage.

Old IASP definition: "An unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage."

New IASP definition: "An unpleasant sensory and emotional experience associated with or resembling that associated with actual or potential tissue damage." 

Although the revision is a relatively small one, it has big implications for appreciating the complexity of pain. Adding the words “resembling” and “potential” allows for an expanded understanding and appreciation of pain beyond what was previously limited to actual tissue damage. 

Dropping the word "described" allows for recognition of pain in people who may not have the ability to effectively communicate their pain, such as infants, cognitively impaired individuals or those with speech and hearing disorders.  

Pain Is a Personal Experience That Should Be Respected

The new definition expands our understanding of pain in 6 key areas: 

• Pain is a personal experience that is influenced to varying degrees by biological, psychological and social factors 

• Pain cannot be inferred solely from activity in sensory neurons 

• People learn the concept of pain through their life experiences 

• Every report of pain should be respected 

• Although pain often has a protective role, it may also have adverse effects on physical function, as well as social and psychological well-being

• The inability to communicate pain does not negate the possibility that someone is feeling pain

It is logical that pain is personal because each person is genetically different and we are programmed with regards to safety vs threat by our past. If you come from a less than nurturing background, more things in the present will seem dangerous. You will spend more of your time in “high alert” – with a sustained exposure to stress hormones and inflammation that could lead to physical symptoms and illness.

Pain being a learned experience is well established in the medical literature. One classic study involved looking at childhood trauma. A scoring system was developed called the ACE score (Adverse Childhood Experiences) that looked at various kinds of physical and emotional trauma. Higher rates of chronic diseases, including chronic pain, are often associated with childhood trauma.

Since physical symptoms are created by the patient’s interaction with his or her environment, it is critical to know the person and their life circumstances. How can you solve any problem without deeply understanding it?

Unfortunately, mainstream medicine has not incorporated the last 20 years of neuroscience research into their treatment approach. It continues to recommend random simplistic treatments for a complex problem. It can’t and doesn’t work. The new IASP definition is a start and opens the door for a better treatment paradigm.

Chronic pain is solvable with a better understanding of it and informed principles behind the solutions. The starting point is for YOU to better understand it and then solve it while using the medical system as a resource. Once you take charge, it is game on.

Dr. David Hanscom is a retired spinal surgeon who now teaches back pain sufferers how to calm their nervous systems without the use of drugs or surgery. He recently launched a new website – The DOC Journey – to share his own experience with chronic pain and to offer a pathway out of mental and physical pain through mindful awareness and meditation.

Where Is the Hurry to Help People With Chronic Pain?

By Carol Levy, PNN Columnist

Why is the United States and the rest of the world in such a hurry to get a vaccine against Covid-19?

Easy to answer: The virus is a killer. As of the writing of this column, the number of American deaths stands at over 237,000 and is rising daily. The number of infected is nearing 10 million. The effect on the economy has been tremendous. The use of medical resources is stretching a fragile system even thinner.

Why aren’t we in such a hurry to develop new treatments and drugs -- specifically non-opioid medications -- for chronic pain?

Hard to answer, given the similarities. Chronic pain is a killer. Some studies have shown that those who live with moderate to severe chronic pain have higher mortality rates than those who do not have painful disorders. Studies have also shown we have higher rates of suicide.

The economic costs of chronic pain in the U.S. are enormous. In 2010, estimates of lost productivity due to pain ranged from $299 to $335 billion. The total cost to the country was estimated to be up to $635 billion, more than the annual costs of heart disease, cancer and diabetes.

Treating chronic pain is also a burden on the health care system. Pain is one of the main reasons for medical appointments. We are often bounced from specialist to specialist to specialist – who often have difficulty diagnosing us or don’t want to be bothered treating us, especially in the face of the “opioid crisis.” The stress of untreated pain often leads to other health issues and diseases, which result in the use of even more medical resources.

Covid is contagious. That makes it more dangerous than chronic pain.

But it seems pain patients are also viewed as contagious. We’re often blamed as the major cause of the opioid epidemic. We allegedly abuse our prescribed opioids or give or sell them to others. We are so careless that others steal them from us. We are the “superspreaders.”

If Covid requires a quick answer due to its deadliness and economic and societal costs, then so too does the epidemic of chronic pain.

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

Study Shows Cannabis Oil Improves Fibromyalgia Symptoms

By Pat Anson, PNN Editor

A small placebo-controlled trial shows that daily doses of cannabis oil rich in THC (tetrahydrocannabinol) significantly improves pain, fatigue and quality of life in people with fibromyalgia.

The study findings, recently published in the journal Pain Medicine, involved 17 women with fibromyalgia living in Florianopolis, Brazil. Participants were given drops of cannabis oil or a placebo for eight weeks, starting with an initial dose of one drop a day orally and then titrating to an average of 3-4 drops a day.

The cannabis oil used in the study contained 1.22 mg of THC and 0.02 mg of CBD (cannabidiol) per drop. THC is the psychoactive ingredient in marijuana.

The women self-reported their symptoms on a questionnaire every 10 days. Few changes were noted in the placebo group, but the women receiving cannabis oil reported significant improvement on a wide range of symptoms, including pain, depression, anxiety and fatigue. They were also more likely to “feel good” and not miss work compared to the placebo group.

“To our knowledge, this is the first randomized controlled trial to demonstrate the benefit of cannabis oil -- a THC-rich whole plant extract -- on symptoms and on quality of life of people with fibromyalgia,” researchers said. “During the intervention, the impact of the intervention on quality of life in the cannabis group participants was evident, resulting in reports of well-being and more energy for activities of daily living. Pain attacks were also reduced, albeit subjectively, in frequency and intensity.”

The researchers concluded that cannabinoids can be a low-cost and well-tolerated therapy for fibromyalgia patients, and recommended that it be included as an herbal medicine option in Brazil’s public health system.

“The demonstration of safety and efficacy in this gold-standard model is significant. Millions of Americans suffer with FM (fibromyalgia) – a condition that tends to be poorly controlled by standard medicines. These clinical findings indicate that for many of these patients, plant-derived cannabis preparations may be a safe and effective alternative,” said Paul Armentano, Deputy Director of NORML, a pro-marijuana advocacy group.

A major weakness of the Brazilian study is its small size. Participants also continued to self-medicate with analgesics and anti-inflammatory medications during the study, which could have affected the findings.

A larger 2019 study in Israel also found that cannabis reduces pain and improves quality of life for fibromyalgia patients. The cannabis used in that study was ingested by tincture, oil or vaporizer.

How to Appeal a Denied Health Insurance Claim

By Barby Ingle, PNN columnist

Most pain patients rely on their healthcare providers to appeal insurance company denial of care decisions for them. Some providers are now charging fees to do the appeal paperwork for a patient.

I have found that when I handled the appeal myself, I am often able to get coverage for what I needed and in a timelier manner. I get that this is a daunting process. Many insurers seem to deny coverage and then wait for the appeal. Only about 20% of us follow through on the appeals for a variety of reasons. But it can be done.

At the end of this article is a sample of the letter I send to my insurance company when I run into a situation where the prior authorization has either taken too long (more than a few days) or has been denied.

I start by including copies of my medical records that pertain to why I need a procedure, durable medical equipment or medication. I have kept all of my medical records going back to 2002 in 3-inch binders. I now have 10 binders full, and have them organized by provider and date of service. Keeping good medical records is key to filing an appeal, so you don’t have to start from scratch.  

It can be very helpful if you also attach 3-5 clinical studies that show the effectiveness of what you are requesting working for others with your condition. Try to use studies completed within the past 5 years and with an N of at least 500 (number of participants). Two places where you can look up studies are ClinicalTrials.gov and MediFind.

I know that finding a study can be quite tough for those with ultra-rare and rare medical conditions. If you fall into that category, mention in your letter that the treatment may still be worth a shot and save you from future medical bills and procedures – and help the insurance company as well.

Here’s a sample letter to use when appealing:

Date

Name

Insurance Company Name

Address

City, State ZIP

Re: Patient's Name, Type of Coverage, Group number/Policy number

Dear (contact person at insurance company),

Please accept this letter as my appeal to (insurer’s name) decision to deny coverage for (state the name of the specific procedure denied). It is my understanding based on your letter of denial dated (insert date) that this procedure has been denied because:

(Quote the specific reason for the denial stated in denial letter)

I was diagnosed with (disease) on (date). Currently Dr. (name) believes that I will significantly benefit from (state procedure name). Please see the enclosed letter from Dr. (name) that discusses my medical history in more detail.

I believe that I am attaching additional information that you did not have at the time of your initial review. I have also included with this letter, a letter from Dr. (name) from (name of treating facility). Dr. (name) is a specialist in (name of specialty). (His/her) letter discusses the procedure in more detail. Also included are additional medical records and several journal articles explaining the procedure and the expected results.

Based on this information, I am asking that you reconsider your previous decision and allow coverage for the procedure Dr. (name) outlines in his letter. The treatment is scheduled to begin on (date). Should you require additional information, please do not hesitate to contact me at (phone number). I look forward to hearing from you in the near future.

Sincerely,

Your name

I want you to have more concrete chances to get the care you need covered. I know that it will take work and won’t always be easy. It will take energy, which most of us already have challenges with.

I like to think about my future when I am in the middle of the appeal process. What would getting this insurance coverage mean to me? More life? A better life? Then it is worth it for me.  

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.  

Scanxiety: My Fear of Cancer Recurrence

By Cynthia Toussaint, PNN Columnist

Several months back, For Grace’s conference planning committee invited our webcaster, Rich, to join the call to talk logistics about our upcoming virtual “Pain-Cancer Connection” event. Rich is a long-time cancer survivor who’s dealt with decades of chronic pain as a result of his aggressive treatment.

It soothed me to talk with him because I was in the midst of brutal chemotherapy. I could relate when Rich shared his nightmare of getting one infusion too many and lying on the floor weeping after losing much of this tongue. I also understood Rich bungie jumping off a Las Vegas building after his treatment in a quest to find something scarier than chemo.

But that ease turned to discomfort when Rich warned me, “Oh Cynthia, you don’t know yet. There’s so much anxiety that comes with cancer.”

While I’ve long been aware that if triple-negative breast cancer returns, it tends to do so more aggressively in the first year or two, Rich was my introduction to “scanxiety.” We cancer survivors live in often paralyzing fear of a recurrence, one that will likely end us. In fact, I was recently stunned to hear a breast cancer survivor speak publicly of her relief when the cancer returned. She preferred to battle the disease again rather than the anxiety.

Now after sweating bullets through my first post-remission imaging, I can’t help but wonder how much scanxiety is reinforced by our broken healthcare system’s reliance on an endless stream of patients whose wellness would pose a threat to their business model.

I’ve said it before and I’ll say it again: the cancer industry thrives on a culture of fear, intentional or not. I’m certain that’s why patients gratefully say “yes” to every treatment offered without blinking. And that’s why I was looked at like I had two heads when I questioned every proposed therapy, relied on my own research, did everything integratively and said “no” to most of my provider’s drugs, scans and (over) treatments.

Sadly, my scanxiety began the moment I attained remission. My oncology surgeon -- who’s still terrified because I didn’t go with her standard-of-care surgery, even though studies support that as a complete responder I had a better chance at surviving without it – told me to do twice weekly breast exams. She then attempted to comfort me by assuring we’d do surgery after the cancer grew back. Those hyper-vigilant exams made me so tender my coordinating nurse told me to back off.

As my initial every-three-month imaging neared, scanxiety reared its ugly head and seriously messed with my health. I stopped sleeping restoratively and was plagued by nightmares. Obsessing on the worst outcome, I started getting severe headaches while my IBS went through the roof.

My terror went into hyper-drive when I found an inflamed lymph node in my neck, the same side as my former tumor. This fright didn’t just infect the patient.  John developed body-wide hives that looked like eczema on steroids, and my close girlfriends felt like they were having nervous breakdowns.

After my breast scan was clean, I rejoiced with John about how we deliberately made all the right choices. My surgeon broke up the party when she entered the examining room voicing her concern about my neck lymph node. Due to its location being a few inches higher than my breast area and healthcare being its dysfunctional self (every department can only scan a small area of the body), I had to wait another WEEK to find out if the cancer had metastasized.

During that soul-rattling scan the imaging technician said the node was abnormal and that I’d hear from my doctor soon. While John wheeled me to the car, I lost my shit and began screaming in the parking garage. I knew “abnormal” meant I was going to die and that six grueling months of chemotherapy hadn’t helped me in the least. How could I have been so wrong?!

I continued screaming in the car until my screamer gave out, while my stomach knotted and head throbbed. Mercifully, my doctor’s call late the next day told me all was clear. That both relieved and angered me; relief because I was assured another three months on the planet, but deeply pissed off because this healthcare-induced trauma was majorly messing with my cancer-fighting terrain. I make it my priority to practice healthy life-style choices to keep my body and mind well and in harmony.

Toxic Medicine

But the body keeps the score. After that last scan, I got a chemo-induced bladder infection from hell, one that’s still knocking me out despite a week on Cipro. With this infection that appears to be moving into my kidneys, multiple chemo side effects have re-roosted; fatigue, heavy heart throbbing, tinnitus and labored breathing. I find myself in the midst of my most recent outcome of fear-based medicine, and I remain snared in their illness-inducing, money making system.    

Deeper reflection leads me to believe that even my “innocuous” port flushes are part of this web of toxic medicine. Every seven weeks (though they push for four), I visit the infusion center where the nurses honestly seem put off, even hostile, that I’m doing well, smiling and in good spirits.

Apparently my role is to be fearful, inferior and vulnerable, and my upbeat, empowered demeanor rattles them. Rather than celebrating winning my life back or chiming in about simple pleasures like fashion and hair color, they drill me about how my post-treatment is going (what post-treatment?!) and what horrors my next scan might bring. My medical oncologist there is so buried in the fear culture, I schedule my appointments to avoid him.

Breathe.

Thankfully, I saw my saint of an integrative doctor last week who set me straight. Dr. Taw was visibly disturbed when I shared my run-ins with these healthcare providers, and was concerned that their behavior might stir things up and create cancer sparking “stagnation” in my body. Several times, he gave me his full support to stay away from these toxic people as much as possible to hold wellness. I couldn’t agree more.

Still, I am wary of my next scan. Despite every logical indicator telling me I’ll likely be A-ok, these people and their diet of fear embed me with dread. I see more than ever that this doesn’t just apply to my last year plus of cancer care; it also applies to my 38-year wrangling with high-impact pain. These western medicine devotees, while they claim to be healers, are the polar opposite for me. And their negative energy creates illness, rather than mitigating it.

Let’s not have to take a bungie jump off a building to overcome our latest medically-induced trauma. I implore you to stay away from these healthcare providers and their dysfunctional, money-based system as much as possible. To be fair, they do some good – but by a long measure, they hurt us beyond repair, again and again.  And again.

Please seek out integrative healing that is non-invasive and wellness (rather than fear) based. Your body and mind will thank you.  

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 15 co-morbidities for nearly four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.” 

One in Five U.S. Adults Have Chronic Pain

By Pat Anson, PNN Editor

Female, white and older Americans are more likely to have physical pain that limits their daily activities, according to a new CDC analysis that estimates about one in five adults have chronic pain.

The study, based on the 2019 National Health Interview Survey (NHIS), adds further insight into the demographic characteristics of chronic pain, a health condition that is more common than diabetes, heart disease and cancer combined.

The survey found that 20.4% of American adults had chronic pain “every day” or “most days” in the previous three months. Of those, a little over a third said they had pain that limited their life or work activities – what the CDC calls “high-impact” chronic pain.  Women (8.5%) were more likely than men (6.3%) to report this kind of high-impact pain.

The likelihood of having chronic pain varied considerably by age, race and whether Americans live in a rural or urban area. For example, only 8.5% of younger adults reported have chronic pain, compared to 30.8% of Americans aged 65 and over.

2019 NHIS SURVEY

The survey found that whites (23.6%) were significantly more likely to have chronic pain compared to Black (19.3%), Hispanic (13.0%), and Asian (6.8%) adults.

Living in rural areas also raised the likelihood of having chronic pain. Over 28% of Americans living in rural areas said they had chronic pain, compared to 16.4% of those living in big cities.

A previous NHIS survey also estimated that 20.4% of Americans adults – about 50 million people -- have chronic pain. Of those, 20 million have high impact chronic pain.

Due to the multidimensional nature of pain and different definitions of its severity and prevalence, estimates can vary widely.  In 2011, the Institute of Medicine released a landmark report claiming at least 116 million Americans have chronic pain.

A recent study warned that middle-aged Americans are experiencing more pain than the elderly, a surprising shift in pain demographics. Researchers at Princeton University and the University of Southern California say acute and chronic pain is rising in working class and less-educated Americans under the age of 60. The findings run counter to long held assumptions that the elderly are more likely to feel pain due to arthritis and other conditions associated with old age.

“This is the mystery of American pain,” researchers reported in the Proceedings of the National Academy of Sciences (PNAS). “If these patterns continue, pain prevalence will continue to increase for adults; importantly, tomorrow’s elderly will be sicker than today’s elderly, with potentially serious implications for healthcare.”

I Deserve To Have My Chronic Pain Managed

By Marguerite Morgan, Guest Columnist

I have lived with chronic pain the majority of my 53 years of life. It’s hard to make the people that cross my path understand that I cannot do things I used to take for granted. Things like attending concerts and other venues, or keeping my home up and my appearance up are the things that I miss and bother me the most. 

Those I love have seen my decline and know that I am truly suffering. The only reason I am suffering is because of the lies told by the CDC. They admitted that their statistics were off regarding overdoses because they combined deaths caused by illegal drugs with those that were prescribed.

These so-called experts turned on those of us who take our opioid medication responsibly and have blamed us for the addiction issues in this country. Laws were made and bills were passed on this false information and now there are millions suffering. 

It's not right that our government continues to uphold the CDC opioid guideline, knowing that we are suffering and medications that will help are denied to us. We are treated like garbage for illnesses, diseases and injuries that doctors can't treat without fear of being raided by the DEA. Their medical licenses are way more important than our quality of life.

Nothing seems to be changing either and it probably won't in my lifetime. But I will continue to fight for those who need advocacy because there are a few good doctors willing to take a chance. 

MARGUERITE MORGAN

We are dying every day either by suicide or from being cut off from pain medication. Our hearts quit because they just can't take the pain that causes.

I just want to know why those that die from abusing drugs intentionally are more important than those of us who take our prescribed medication as directed. It seems life has truly turned upside down and nothing seems right anymore.

I suffer from intractable pain caused by an injury to my spine. I also have inflammatory rheumatoid arthritis, osteoarthritis, Addison’s disease, fibromyalgia and degenerative disc disease, to name just a few of my painful conditions.

I deserve to have this pain managed. I deserve to enjoy and take part in life, instead of just seeing it pass me by through my living room window. 

Marguerite Morgan lives in Washington state.

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

Study Launched to Look at Suicides of Chronic Pain Patients

By Pat Anson, PNN Editor

One of the more unrecognized and under-reported aspects of the opioid crisis is what happened to millions of chronic pain patients in the U.S. who were tapered or cut off from opioid medication in the name of preventing addiction and overdoses.

We know a lot about opioid prescribing. The number of prescriptions has fallen by about a third since their peak. And the supply of opioid pain relievers, according to the DEA, is at its lowest level since 2006.  We can literally count them down to the last pill.

But we don’t know what happened to the patients. How many were abandoned by their doctors? How many became disabled or lost their jobs? How many died from strokes or heart attacks? How many surrendered to despair by taking their own lives? We simply don’t know.

Critics say pain patients have fallen through the wide cracks of a cruel and willfully blind public health experiment.

“I’ve seen patients destabilized and nearly die by suicide after prescription opioids were stopped. I’ve been receiving notice of these for several years now. And I’ve never really been in a situation where a large number of patients were dying and health systems do not systematically study it and try to stop it,” says Stefan Kertesz, MD, a professor of medicine at University of Alabama at Birmingham (UAB).

“We have setup systems that insist on measuring prescription opioid doses and incentivizing reduction, but which are not measuring the outcomes of that change in care. Hospitals and clinics are not even asked to check what happened to the patient.”

In one of the first efforts to find out, Kertesz and co-investigator Allyson Varley, PhD, are recruiting family members and close friends of pain patients who died by suicide for a study to see what happened to their loved ones after changes were made in their opioid medication.

“What we’re trying to do is marry what patients are telling us is needed with scientific rigor, so that the appropriate people will listen to us when we say there is a problem,” said Varley, who works in the UAB Center for Addiction and Pain Prevention and Intervention.

“We are very committed to this. As long as people are having unsuccessful tapers, we’re interested in studying what’s happening and how to make it better, by increasing access to the care that you need when you have chronic pain, whether that’s opioids or not.”

Reaching Out to Survivors

The dead can no longer speak for themselves, which is why the survey is focused on reaching surviving loved ones who witnessed the pain and despair of their deceased spouse, child, parent, partner or friend.  

“We have to reach survivors who believe that is what they saw, and who can provide some preliminary information to hint that is really what happened,” Kertesz explained.

No one knows with any certainty how many pain patients have died by suicide in recent years, but it probably runs in the thousands. We’ve shared some of their stories on PNN, including that of Meredith Lawrence, who witnessed the suicide of her husband, Jay.

“I lost my husband in 2017 by suicide after his medications were taken away,” Lawrence said. “At that point, I wrote about our experience for the public, and it drew attention nationally. To see Dr. Kertesz and his colleagues take this seriously matters to me because nobody should lose a loved one over something treatable.”  

Much of the groundwork for the UAB survey was laid by patient advocate Anne Fuqua, who began compiling information about patient suicides several years ago. Her list has grown to over 100 well-documented suicides.

“This is truly a dream come true that these deaths are being taken seriously. When a dear friend died of a heart attack in 2014, the only way I could cope was finding and memorializing these deaths,” said Fuqua. “I could never have imagined this would come to fruition.”

Suicides Rising

The suicide rate in the U.S. has risen by about a third since the turn of the century, but there is no easy explanation for the increase. Suicides usually involve multiple factors, such as inadequate healthcare, mental health issues, drug and alcohol abuse, social isolation and economic inequality – what has been called “deaths of despair.” Throw in poorly treated or untreated pain and you have a recipe for suicidal thoughts.

Kertesz and Varley are hoping to get at least 200 family members and friends to participate in their survey. More would be better, because it could lead to larger studies that will help them document what is happening in the pain community.

“If we can convince people that this is a tragedy that needs to stop and we are passionately committed to it, and some people come forward, maybe we can get external funding to allow us to do the research that’s really needed,” says Kertesz. “It’s very hard to make the case when you don’t have pilot data to show that these families are willing to come forward.

“If one outcome of starting the study is that policymakers begin to realize that there is a serious risk to having physicians flee their patients, that would be a helpful outcome. It might change the dialogue a bit.”  

To participate in the online survey, click here. Or call 1-866-283-7223. The survey will take about 25 minutes. Respondents will be asked a series of questions about the loved one who died, their healthcare and life situation at the time of death.

Healthcare Is a Human Right That We Deserve

By Jennifer Kain Kilgore, PNN columnist

I shouldn’t have to write this. But here I am because of headlines like these:

“FTC Refunds Almost $3.9 Million to Purchasers of Deceptively Advertised Quell Wearable Pain-Relief Device”

My body went numb after reading that. The Quell, which I wore for four years, that I blogged about, that I recommended to friends and family? That Quell?

The Federal Trade Commission slapped parent company NeuroMetrix for deceptive advertising. Specifically, the company was cited for claiming the Quell works throughout the whole body and not just where it’s worn.

“NeuroMetrix settled the case – without admitting or denying the allegations – for $4 million. The company also agreed to stop claiming that Quell provides relief for chronic or severe pain beyond the knee area where the device is worn,” PNN reported.

Soon enough I was receiving texts -- “Is this true?” “Does it not work?”

It worked for me, but that’s not why I’m writing this. My testimonial is still and will remain on NeuroMetrix’s website. The company didn’t ask me to come to their defense. Despite the bad press, that gadget worked for me.

NEUROMETRIX IMAGE

Getting a $50 refund from NeuroMetrix in my PayPal account, though? The company’s silence and tacit admission made a helpless rage boil inside where anger has been simmering for weeks and months and years.

It made me as angry as when desperate pain patients called my law office, asking if I would draft legislation or talk sense to their doctors. Or when a genuinely good product came on the market but took advantage of customers. Or when the Sackler family didn’t go to prison after their pharmaceuticals created the conditions for the national opioid epidemic to truly explode. That bubbling anger began to rise.

Where should I direct this rage? At the callers? At the makers of the SpineGym, who took their crowdsourced money and failed to deliver on their promises? At the Sacklers? No, of course not. It’s not about them. My anger is bigger than that.

I shouldn’t have to write a reaction piece about the FTC’s decision. I shouldn’t have to draft laws to change a healthcare system in which pain patients are discounted, dismissed, and even overlooked.  Sometimes our limitations and physical pain prevent us from seeking the help we need.  

I shouldn’t have had to write for Pain News Network in the first place, though I’m thankful for the opportunity to do so. I became a columnist in order to try all the gadgets claiming to cure back and neck pain. If my doctors wouldn’t help me, I would help myself.

And there it is.

A record-breaking number of citizens have already voted. Despite their overwhelming voices, a Supreme Court justice was just appointed whose legal interpretation could dismantle the Affordable Care Act, which is on the Supreme Court Docket on November 10, just seven days after the most important election in history.

If you’re reading this, health insurance is crucially important to you or someone you love. Right now, our president’s legal team is in court attempting to kill the ACA without any kind of replacement during a global pandemic that has killed over 231,000 Americans.

But that’s not why I’m writing this.

I used to blog about my journey through the healthcare system. By the time I’d graduated from the Quell to an implanted spinal cord stimulator (which also works), I’d exhausted myself. It was time to focus on finally, finally healing. You know, being a normal person again.

The spinal cord stimulator -- controversial for sure, and not a surefire bet -- ended up working beyond my wildest dreams. Even though I’ve pulled on wires and scar tissue, my life has been partially restored. My doctor said the Quell was a good indicator as to whether a SCS would even work. If the Quell helped, so would a spinal cord stimulator.  

Before the SCS, I wasn’t able to consistently work as an attorney; I could barely leave my house. I was dependent on my husband for everything from insurance to carrying bags of groceries.

After the SCS, I can do yoga and pilates. I can lift laundry baskets. I can go to work and sit through a two-hour deposition. I can be an actual person again.

But that’s not why I’m writing this.

I shouldn’t have spent sixteen years of my life begging for help. I shouldn’t have to become a patient advocate and a writer for an online publication because I couldn’t otherwise afford pain-relief devices.

I shouldn’t have to write this.

I shouldn’t have to fight my insurance company to get my treatments covered. I shouldn’t have to stagger bill payments to various hospitals so as not to overdraft my account. I shouldn’t be paying for my spinal cord stimulator more than a year after its implantation.

I shouldn’t -- we shouldn’t -- have to do these things. We shouldn’t have to fight so hard to live in what’s supposedly the greatest country on earth.  What’s so great about living in fear? Fear of the unknown, the future, access to healthcare resources, and effective treatments? I’ve lived in fear for long enough, and so have you.

I shouldn’t be here. You shouldn’t be here, reading this. This website shouldn’t exist, and we shouldn’t have to fight so hard. But one in five Americans adults has chronic pain, and something must be done.

Healthcare is a human right, and we deserve it.  So VOTE.  Protect your loved ones by protecting healthcare.

Jennifer Kain Kilgore is an associate attorney at MALIS|LAW, working in civil litigation. She has chronic back and neck pain after two car accidents. 

Survey Finds Over Half of MS Patients Abused by Caregivers

By Pat Anson, PNN Editor

People with multiple sclerosis already have enough problems living with a progressive disease and sky-high medical bills. But now there’s word that many of them are being abused by their own caregivers.   

Researchers at the University of California, Riverside surveyed 206 patients with advanced MS and found that over half of them were being abused in some way by an unpaid caregiver who was often a member of their own family. The mistreatment ranged from psychological (44%) and financial abuse (25%) to neglect (16.5%) and physical abuse (11%). Over 8 percent of patients said they were abused sexually.   

"We knew we would find some level of abuse and neglect, but we were surprised by how prevalent it is," said Elizabeth Morrison-Banks, MD, a health sciences clinical professor at the UC Riverside School of Medicine, who led the study. "The findings of this study represent a collective cry for help from so many families affected by multiple sclerosis across the United States."

MS is a chronic and disabling autoimmune disease that attacks the body’s central nervous system, causing pain, numbness, difficulty walking, paralysis, loss of vision and fatigue.

"Some people live with MS for many years but with milder symptoms, and they may remain completely self-sufficient and never require a caregiver,” Morrison-Banks explained. “Others are less fortunate and develop neurological disability that can make them vulnerable to abuse and neglect if they are unable to move around independently, take care of their own finances, or get away from the situation when family conflict escalates. These problems are compounded if the person with MS and family lack financial resources."

A recent study found over 75% of American adults with MS face financial hardship that has forced them to cut spending on food, clothing and housing. Many have gone into debt or filed for bankruptcy, and over a third have delayed or stopped filling prescriptions because they can’t afford them. The average cost of disease-modifying MS drugs is about $76,000 a year.

For MS patients who are struggling financially, hiring a professional caregiver is not an option, so many have to rely on family caregivers.

"Some family caregivers are also working full time, caring for children or other family members, and sometimes dealing with health issues of their own," explained Morrison-Banks. "I want to emphasize that the majority of family caregivers do not mistreat those they care for, even in situations that can be very challenging. Nonetheless, it is important to recognize the risk factors for mistreatment of people with disabilities, and do what we can to identify, mitigate, and prevent abuse and neglect."

Other risk factors for mistreatment include MS patients with higher levels of cognitive impairment, caregivers having a mental health problem, alcohol use by the caregiver or patient, and low levels of social support within the family.

"Being a full-time family caregiver for someone with substantial neurological disability often presents significant challenges," Morrison-Banks said. "Many families take these challenges in stride, but others end up in situations of abuse and/or neglect."

The survey findings have been published in the journal Multiple Sclerosis and Related Disorders. The research paper is believed to be the first to document the nature and extent of caregiver mistreatment of MS patients in the United States.

The survey did not include patients who had paid caregivers or trained clinicians. A study of paid caregivers is an important next step for the research team. The National Multiple Sclerosis Society funded the UC Riverside study.

U.S. in ‘Fragile State’ as Election Nears

By Roger Chriss, PNN Columnist

The United States is about to have its national election. And for the first time in American history, the election will happen amid a pandemic.

The country is deeply divided, unsure about how to address the coronavirus, what to do about health insurance or drug overdoses, and which way to move forward on social justice, racial inequality and socioeconomic divisions.

In the realm of public health, the coronavirus predominates as the country faces another surge in infections, with a record count of nearly 100,000 new cases Friday. Hospitalizations and deaths are rising across the nation.

“As we enter the coming months, which include a national election and many holidays, our country is in a fragile state. Many people are understandably worried about the days and weeks ahead,” Children’s Hospital of Philadelphia warned in a blog post.

“Wearing masks and resisting the temptation to take part in medium to large gatherings that include people who are not members of your immediate family/small bubble are things we can and must do to protect ourselves and our loved ones. We encourage all to be safe out there, and to get out and vote safely, if you have not done so already.”

In addition to the pandemic, overdose deaths are rising again, largely due to illicit fentanyl and other street drugs. The United Nations reports that synthetic cannabinoids are also a rising threat. And if all this weren’t enough, Washington state is seeing an invasion of murder hornets.

“Whatever the outcome of the election, the coming winter will be difficult. And whoever occupies the White House on January 21 will probably have to deal with another major epidemic before his term is over,” journalist Ed Yong writes in the Atlantic. “The U.S. has now clearly seen what happens when a pandemic occurs under Trump. It is an experiment that no one should ever want to rerun.”

The election process itself is fraught this year. NPR is reporting that hundreds of polling places in Iowa will be closed on Election Day due to the coronavirus. Voting for people quarantined or newly diagnosed with Covid-19 could also be difficult if they can’t vote by mail.

The election outcome is uncomfortably uncertain. Politico assembled a day-by-day guide to all the possible outcomes from November 3 to January 20, from recounts to Supreme Court intervention. If President Trump loses, Politico also put together a list of what he might do during his remaining days in office, from mass pardons to a revenge campaign against the “Deep State.”

Election Pain

This is the stuff that nightmares are made of. Some people are abandoning social media, going off Twitter or internet discussion forums, or deleting news apps and silencing their phones. Others are engaging in “radical self-care” by playing video games or binging on old TV shows all day long, or hibernating their way to November 4. There is no end of online discussion about how to get offline and avoid discussion of the pandemic, politics and election outcomes.

But after the election, some things will not change. People with chronic disorders will still have the same diagnoses, the same treatment options, and the same prognoses as they did before. Election outcomes matter, but not for some things.  

Most people with chronic painful disorders have already survived far worse than the coronavirus or this election. Election pain may lead to a sleepless night or two for some people, but chronic pain can lead to sleepless nights for years. Insomnia is a routine part of small fiber neuropathy, complex regional pain syndrome and ankylosing spondylitis.

Election pain may create digestive problems like GERD or IBS for some people, but chronic painful disorders can include a lifetime of gastrointestinal distress. The ability to eat comfortably and digest reliably is not something that people with Ehlers-Danlos syndrome, pancreatitis or inflammatory bowel disease enjoy.

Election pain may make the time after November 3 seem uncertain, but for people with disorders like epilepsy, multiple sclerosis or sickle cell disease, that uncertainty is normal. Life is never stable when your body may misfire at any time.

Election pain may make life even harder for people with these disorders. The best we can do is stick to our routines and stay focused on our health. Come the results of the election, we can be gracious. And if all else fails and everything is hellish, just keep going.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research. 

New Screening Tool Identifies 80% of Patients at High Risk of Rx Opioid Abuse

By Pat Anson, PNN Editor

A new opioid screening tool is being introduced that claims to predict – with 80% accuracy – which patients receiving an opioid prescription are likely to have an overdose or get an opioid abuse diagnosis within the next six months.

Geneia, a healthcare data firm based in Pennsylvania, is integrating the opioid screening tool into its analytics platform, which is used by hospitals, insurers, employers and physician groups providing healthcare to over 7 million patients.

Contrary to popular belief, abuse is relatively rare in patients prescribed opioids, so it’s a bit like finding a needle in a haystack. Less than one percent (0.7%) of patients on opioids suffer an overdose or abuse their medication, according to Geneia.

But the consequences of opioid abuse are so serious medically, legally and financially to both patients and providers that healthcare organizations are eager to identify patients who are most at risk.

"An ounce of prevention is worth a pound of cure," said Fred Rahmanian, Geneia’s chief analytics and technology officer. "Knowing in advance who is at high-risk for an opioid abuse diagnosis or overdose enables physicians to choose alternative pain management strategies."

For example, a hospital using Geneia’s screening tool might give a surgery patient deemed to be “high-risk” a non-opioid pain reliever like acetaminophen for post-operative pain.

‘It’s All Data Driven’

Opioid screening tools have been used for years to help providers identify high-risk patients. Usually they involve questionnaires in which a patient’s medical history is assessed, along with their personal and family history of alcohol and drug use. The risk assessment might also include genetic testing or asking if a patient suffered sexual abuse as a minor.   

Geneia’s screening tool is different. It only looks at the diagnostic codes used in a patient’s medical and pharmacy claims – known as ICD-10 codes – without getting any direct input from providers about patient history. The company’s algorithms search the diagnostic codes for 22 different variables that may indicate a patient may be prone to opioid abuse.

“It’s all data driven,” says Geneia CEO Heather Lavoie, who downplays the importance of questionnaires about patient history.

“Oftentimes you don’t get accurate information. Even about family history of substance use and abuse,” she told PNN. “People are not good historians. There’s often a lot of misinformation, so you’re not always getting an accurate response to questionnaires. Obviously, sometimes you do, but not universally. And so, the benefit is that we can, with very little information, be highly predictive.”

“Glad to see there are efforts to help identify people at increased risks of abuse.  We need accurate and easy to use predictive criteria for those at increased risk of abuse and overdose,” says PNN columnist Dr. Lynn Webster, a pain management expert who developed the first “opioid risk tool” about 15 years ago.  

“Much of the accuracy of tools depends on definitions.  Unfortunately, there are multiple definitions of abuse, misuse and addiction. This makes it difficult to understand what is actually being assessed and predicted with any tool, including this one.” 

Webster is puzzled why Geneia’s screening tool omits a patient’s personal history and genetic testing, and says it may rely too heavily on diagnostic codes.    

“Unfortunately, few physicians know how to diagnose abuse from misuse and addiction. For example, many providers still believe that if someone experiences withdrawal they are addicted, which is not necessarily true,” said Webster. “The bottom line is that if the tool is based on ICD-10 diagnoses it relies on the clinician’s ability to make accurate diagnoses, most of whom have never been trained to make such diagnoses.  

“I am surprised that genetic evaluation is not considered in their tool since the vulnerability of opioid addiction is mostly genetic. The balance of the vulnerability to addiction comes from environmental factors like social-economic despair and mental health disorders.”  

Another thing that makes Geneia’s screening tool unique is that it can be used with children and adolescents. Opioid risk tools are typically only used for patients 18 years of age or older.

High False Positive Rate

Geneia tested its screening tool against a database of several million insurance claims, and says it accurately identified 80 to 88 percent of patients who are likely to have an opioid abuse diagnosis or an overdose.

But analytics are not foolproof. Geneia’s screening tool has a false positive rate of nine percent – meaning about one in every ten patients will be flagged inappropriately as high-risk.

“The false positive rate, depending on the data-set, is pretty high because it’s a very rare event rate. It’s really hard to pick the needle out of the haystack,” explained Jasmine McCammon, a data scientist who designed Geneia’s screening tool.  

On the flip side of opioid abuse, the screening tool also identifies patients who are at not high risk, giving reassurance to doctors who are uncertain about whether a patient should be given opioids.

Regardless of what the screening tool finds, CEO Lavoie says the company’s analytics should never be used as a diagnostic device.

“Predictive models shouldn’t be used in place of strong medical practice. They really are to help advise and to provide contextual information, so they (doctors) can work with the patient more directly. It’s in no way a surrogate for good care, but it does help provide additional caution,” Lavoie said.