Denials of Health Insurance Claims Are Rising

By Elisabeth Rosenthal, KFF Health News

Millions of Americans in the past few years have run into this experience: filing a health care insurance claim that once might have been paid immediately but instead is just as quickly denied.

If the experience and the insurer’s explanation often seem arbitrary and absurd, that might be because companies appear increasingly likely to employ computer algorithms or people with little relevant experience to issue rapid-fire denials of claims — sometimes bundles at a time — without reviewing the patient’s medical chart. A job title at one company was “denial nurse.”

It’s a handy way for insurers to keep revenue high — and just the sort of thing that provisions of the Affordable Care Act (ACA) were meant to prevent. Because the law prohibited insurers from deploying previously profit-protecting measures such as refusing to cover patients with preexisting conditions, the authors worried that insurers would compensate by increasing the number of denials.

And so, the law tasked the Department of Health and Human Services with monitoring denials both by health plans on the Obamacare marketplace and those offered through employers and insurers. It hasn’t fulfilled that assignment. Thus, denials have become another predictable, miserable part of the patient experience, with countless Americans unjustly being forced to pay out-of-pocket or, faced with that prospect, forgoing needed medical help.

A recent KFF study of ACA plans found that even when patients received care from in-network physicians — doctors and hospitals approved by these same insurers — the companies in 2021 nonetheless denied, on average, 17% of claims. One insurer denied 49% of claims in 2021; another’s turndowns hit an astonishing 80% in 2020. Despite the potentially dire impact that denials have on patients’ health or finances, data shows that people appeal only once in every 500 cases.

Sometimes, the insurers’ denials defy not just medical standards of care but also plain old human logic. Here is a sampling collected for the KFF Health News-NPR “Bill of the Month” joint project.

  • Dean Peterson of Los Angeles said he was “shocked” when payment was denied for a heart procedure to treat an arrhythmia, which had caused him to faint with a heart rate of 300 beats per minute. After all, he had the insurer’s preapproval for the expensive ($143,206) intervention. More confusing still, the denial letter said the claim had been rejected because he had “asked for coverage for injections into nerves in your spine” (he hadn’t) that were “not medically needed.” Months later, after dozens of calls and a patient advocate’s assistance, the situation is still not resolved.

  • An insurer’s letter was sent directly to a newborn child denying coverage for his fourth day in a neonatal intensive care unit. “You are drinking from a bottle,” the denial notification said, and “you are breathing on your own.” If only the baby could read.

  • Deirdre O’Reilly’s college-age son, suffering a life-threatening anaphylactic allergic reaction, was saved by epinephrine shots and steroids administered intravenously in a hospital emergency room. His mother, utterly relieved by that news, was less pleased to be informed by the family’s insurer that the treatment was “not medically necessary.”

As it happens, O’Reilly is an intensive-care physician at the University of Vermont. “The worst part was not the money we owed,” she said of the $4,792 bill. “The worst part was that the denial letters made no sense — mostly pages of gobbledygook.” She has filed two appeals, so far without success.

Some denials are, of course, well considered, and some insurers deny only 2% of claims, the KFF study found. But the increase in denials, and the often strange rationales offered, might be explained, in part, by a ProPublica investigation of Cigna — an insurance giant, with 170 million customers worldwide.

ProPublica’s investigation, published in March, found that an automated system, called PXDX, allowed Cigna medical reviewers to sign off on 50 charts in 10 seconds, presumably without examining the patients’ records.

Decades ago, insurers’ reviews were reserved for a tiny fraction of expensive treatments to make sure providers were not ordering with an eye on profit instead of patient needs.

These reviews — and the denials — have now trickled down to the most mundane medical interventions and needs, including things such as asthma inhalers or the heart medicine that a patient has been on for months or years. What’s approved or denied can be based on an insurer’s shifting contracts with drug and device manufacturers rather than optimal patient treatment.

Automation makes reviews cheap and easy. A 2020 study estimated that the automated processing of claims saves U.S. insurers more than $11 billion annually.

But challenging a denial can take hours of patients’ and doctors’ time. Many people don’t have the knowledge or stamina to take on the task, unless the bill is especially large or the treatment obviously lifesaving. And the process for larger claims is often fabulously complicated.

The Affordable Care Act clearly stated that HHS “shall” collect the data on denials from private health insurers and group health plans and is supposed to make that information publicly available. (Who would choose a plan that denied half of patients’ claims?) The data is also supposed to be available to state insurance commissioners, who share with HHS the duties of oversight and trying to curb abuse.

To date, such information-gathering has been haphazard and limited to a small subset of plans, and the data isn’t audited to ensure it is complete, according to Karen Pollitz, a senior fellow at KFF and one of the authors of the KFF study. Federal oversight and enforcement based on the data are, therefore, more or less nonexistent.

HHS did not respond to requests for comment for this article.

The government has the power and duty to end the fire hose of reckless denials harming patients financially and medically. Thirteen years after the passage of the ACA, perhaps it is time for the mandated investigation and enforcement to begin.

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

FDA Expands Use of Spinal Cord Stimulators to More Types of Back Pain

By Pat Anson, PNN Editor

The U.S. Food and Drug Administration continues to expand the use of spinal cord stimulators, despite a growing body of research that questions the safety and effectiveness of the devices.

This month the FDA approved the use of Abbott’s spinal cord stimulators for the treatment of chronic back pain in people who are unable to get corrective surgery – known as non-surgical back pain -- because they are too medically frail or have numerous degenerative disc problems. Those patients are usually treated with pain medication, physical therapy or spinal injections.

FDA approval was granted after a clinical study showed that SCS devices equipped with Abbott's BurstDR technology provided significant pain relief, better physical function, and improved quality of life in 200 patients with non-surgical back pain. The devices are surgically placed near the spine and emit mild electrical impulses to disrupt pain signals before they reach the brain. 

Participants in the study had chronic and disabling back pain for an average of nearly 13 years before getting the devices.

"We have struggled with how to treat people who weren't considered a good surgical candidate because we didn't have clear, data-driven treatment options for non-surgical back pain," Timothy Deer, MD, CEO of the Spine and Nerve Centers of the Virginias, said in an Abbott press release. "This new indication for Abbott's SCS devices, together with BurstDR stimulation, allows physicians the ability to identify and treat a new group of people, providing them with relief from chronic back pain."

BurstDR stimulation uses mild electrical pulses — or bursts — without creating an uncomfortable tingling sensation in the spine known as paresthesia.  All of Abbott's SCS devices use BurstDR technology.

Nine out of ten patients who received BurstDR therapy experienced significantly better function or pain relief, with pain levels reduced an average of nearly 70 percent. The improvements were sustained 12 months after the devices were implanted.

"This FDA expanded indication approval for our SCS devices is a significant step forward in Abbott's goal to provide treatment access to those who suffer daily with chronic back pain but are not eligible for corrective surgery," said Pedro Malha, vice president of neuromodulation for Abbott.

SCS devices were long considered a treatment of last resort for people with severe back, neck and leg pain, but in recent years the FDA has expanded use of the devices for conditions such as painful diabetic neuropathy. The devices are often promoted as safer alternatives than opioid pain medication.

Recent research, however, has raised questions about the safety, efficacy and long-term benefits of the devices. A recent Cochrane review concluded the stimulators work no better than a placebo for treating chronic low back pain, and provide little or no improvement in quality of life.  In a review of 13 clinical trials, researchers found little clinical data on the long-term effectiveness of SCSs, and noted that most of the studies lasted less than a month, were poorly blinded, or funded by device makers.

A 2018 study by investigative journalists found that SCSs have some of the worst safety records of medical devices tracked by the FDA.

A 2020 FDA review of adverse events involving stimulators found that nearly a third were reports of unsatisfactory pain relief. Other common adverse events are nerve damage, infections, and device malfunctions that may lead to further surgeries.

A 2022 study found that patients who get the devices did not reduce their use of opioids, and continued getting medical procedures such as injections, epidurals and radiofrequency ablation.

Regular Exercise Boosts Pain Tolerance

By Pat Anson, PNN Editor

People who remain physically active over a long period have much greater pain tolerance than those who are sedentary and don’t get much exercise, according to a large new study in Norway.

While exercise has long been touted as a way to ease or even prevent chronic pain, this particular study falls short in actually proving it, which we’ll get to later.

Researchers at University Hospital of North Norway analyzed data from 10,732 adults who participated in a large health survey -- the Tromsø Study --- that is conducted periodically in Norway. The researchers used data from two rounds of the study that were conducted seven years apart, one in 2007-2008 and the other in 2015-2016.

Most of the participants (79%) said they were either sedentary or engaged in only light exercise, while the remainder reported moderate or vigorous activity. About a third of the participants (32%) said they had chronic pain,

Pain tolerance was assessed by how long they could keep a hand immersed in cold water that was a few degrees above freezing (3 degrees Celsius or 37.4 degrees Fahrenheit).

The study findings, published in the journal PLOS ONE, showed that participants who reported vigorous physical activity in either round had significantly more pain tolerance than the couch potatoes who maintained a sedentary lifestyle in both rounds.

The good news for couch potatoes is that pain tolerance can be improved. As the chart below demonstrates, people who boosted their physical activity (PA) over time were able to keep their hands in cold water for longer periods, suggesting they have more pain tolerance.

source: plos one

“In summary, these findings suggest that becoming or remaining active at a level above being sedentary, or making a positive change in activity level, over time is associated with higher pain tolerance as opposed to being sedentary or making a negative change,” researchers reported. “Whatever you do, the most important thing is that you do something!”

Interestingly, having chronic pain did not influence the findings one way or another. Researchers found that chronic pain “does not significantly interfere” with the relationship between physical activity and pain tolerance. However, they were hesitant to draw a conclusion from that, saying the findings “might look different” if pain conditions were broken down into different diagnostic groups, instead of under one broad term under the label “chronic pain.”      

Even moderate physical activity is known to stimulate the production of endocannabinoids – cannabis-like substances naturally produced by the body -- which can relieve pain and inflammation. Regular exercise can also help us lose weight, reduce the risk of heart disease, and boost overall health.  

Why Changes at Teva Could Worsen Rx Opioid Shortages

By Pat Anson, PNN Editor

A change in the business model of one of the world’s largest manufacturers of generic drugs could lead to further shortages of opioids and other medications in the United States, according to an industry expert.

Last week Israel-based Teva Pharmaceutical Industries said it would reduce its production of generics from 80% of its drug portfolio to 60% over the next few years. Teva’s CEO says the company plans to focus on more profitable branded drugs as part of its “pivot to growth.”

“The drugs we’re pulling out of are drugs which are low-margin,” CEO Richard Francis told Bloomberg.

Teva has not publicly identified which generic drugs it will stop producing, but said it would “very carefully” avoid dropping any medications that are already in short supply.

“We don’t want to let the pharmacists, the wholesalers and the patients down. We want to make sure they always have their drug when they’re looking for it,” Francis said in an interview with Endpoints News.

But Teva has already moved to reduce its production of generic oxycodone, informing the Food and Drug Administration earlier this month that it would discontinue producing 30, 15, and 5 mg tablets of immediate release oxycodone. Teva did not respond to multiple requests from PNN to explain the reasons for the discontinuation.

The FDA does not currently list oxycodone on its drug shortage database, but the American Society of Health-System Pharmacists (ASHP) does.

As PNN reported, ASHP added oxycodone to its nationwide list of drug shortages in March, with generic drug makers Amneal, Camber and Rhodes Pharmaceuticals reporting shortages of 5, 15, 20 and 30 mg oxycodone tablets.

They are a large producer and other companies may not be able to make up the difference. I think it really will result in shortages.
— Dr. Erin Fox, University of Utah Health

“I know that (Teva’s) CEO came out with a statement saying that they wouldn't leave the market for products that are in short supply, but it hasn't exactly been a great market overall. The overall capacity of just the generic market is very difficult. When you look at controlled substances, that gets even more difficult,” says Erin Fox, PharmD, Senior Pharmacy Director at University of Utah Health, which tracks drug shortages for the ASHP.

“They (Teva) are a large producer and other companies may not be able to make up the difference. I think it really will result in shortages.”

As an example of how tight the supply of opioids and other controlled substances is, Fox says the University of Utah Health system reached out to its drug wholesaler to let them know that it was adding 50 new beds to its cancer clinic and would be needing more pain medication and other drugs to treat the extra patients. The answer it received was not reassuring.

“It's mostly opioids that we anticipate needing more of. And the wholesaler said, ‘Well, let's just wait until we start receiving your orders to increase the amounts that you're going to buy,’” Fox told PNN. “I think the wholesalers’ settlement that they've done has really limited the amount of products that pharmacies can access. Even if you have the patients, it can be very difficult to increase the amount that you're ordering.”

Fox is referring to a $21 billion opioid litigation settlement that three large drug distributors reached with 46 states last year, which requires them to impose strict limits on the amount of opioids and other controlled substances they can supply to pharmacies in any given month. An unusually large order for opioids could result in a pharmacy getting red-flagged by a distributor and the order cancelled, regardless of patient needs.

“We're unable to be proactive. We're trying to think ahead. And we don't want to have that situation where we we're getting very close to running out or not having enough. That's basically what our wholesaler says has to happen,” Fox explained.

DEA Production Cuts

Fox says years of cuts in production quotas by the Drug Enforcement Administration have also contributed to shortages. With opioids and some other controlled substances in tight supply, there is little margin for error or unexpected developments in the pharmaceutical industry – like Teva reducing its production of generics.

Keeping track of the drug supply is made more difficult because production quotas for each company are not disclosed by the DEA and there is little transparency in the business.

“What we don't have is the amount that the DEA is giving to each supplier. And then we also don't know the amount that each supplier is then manufacturing. Because we don't have that transparency, it's really hard to know,” Fox said. “Drug manufacturing is a business. And even though patients are at the end of it, these drug companies don't have to tell people why they're discontinuing something. They don't have to have to say what market share they had or if they think there might be a shortage. They can just stop at any time.”

Another issue is that DEA’s annual production quotas are not transferable from one company to another. That’s why Fox believes the changes at Teva are likely to worsen drug shortages.

“DEA assumes that everything is going perfectly with manufacturing, that no companies are having a glitch, and no companies are having a problem. And so one company might be having manufacturing problems, but still holding onto their quota. They can't necessarily give it to another company who's able to ramp up production,” she said.

“There’s just a lack of transparency. It's very hard. I've been monitoring drug shortages for over 20 years. Almost always, when a company quits, we end up with some kind of a shortage. Hopefully it won't be long term.”

Another factor that could be influencing Teva’s decision is the $4.25 billion nationwide settlement the company agreed to pay in opioid litigation last year. Teva’s production of generic and branded opioids dwarfed that of Purdue Pharma and other better known drug companies. Now heavily in debt, Teva may have decided that profits in a low-margin product like opioids are simply not worth the risk.      

FDA Authorizes Smartphone App for Fibromyalgia

By Pat Anson, PNN Editor 

The U.S. Food and Drug Administration has authorized the marketing of the first smartphone-based digital therapy for fibromyalgia. The Stanza mobile app doesn’t relieve the physical pain of fibromyalgia, but is designed to help patients manage the anxiety, depression and other psychological symptoms that often come with fibromyalgia.

Fibromyalgia is a poorly understood condition characterized by widespread body pain, headaches, fatigue, insomnia and mood disorders. The FDA has approved only three medications for fibromyalgia -- duloxetine (Cymbalta), milnacipran (Savella), and pregabalin (Lyrica) – but many patients consider the drugs ineffective or have too many side effects.

“This represents a major milestone both for our company and the fibromyalgia patients we serve, and is a big step towards meaningfully addressing patient access barriers by making evidence-based, non-drug treatments available to more people,” said Mike Rosenbluth, CEO of Swing Therapeutics, the maker of Stanza.

“On top of dealing with the debilitating symptoms, fibromyalgia patients have been historically underserved and even stigmatized. Current FDA-approved medications, while offering moderate efficacy, are often accompanied by side effects.”  

The Stanza app provides training in acceptance and commitment therapy (ACT), a form of cognitive behavioral therapy (CBT), to help patients develop flexibility and resilience in coping with fibromyalgia. ACT teaches mindfulness strategies and behavioral changes to help people accept and manage their pain.

In a clinical trial, Stanza significantly reduced depression and anxiety in fibromyalgia patients, while improving their quality of life. About 80% of patients responded to Stanza therapy and the benefits were sustained for up to 12 months.

Stanza is designed to be used five to seven days per week, for about 15 to 20 minutes a day, over a 12-week period. After 12 weeks, the app can be used as needed.

Stanza is only available by prescription. It was first made available last year under the FDA’s Digital Health Enforcement Policy for Digital Health Devices. Swing Care, an online clinic that provides personalized treatment of fibromyalgia, includes Stanza as an option for patients in Texas. Swing Therapeutics anticipates that Stanza will also be available through Swing Care in other states later this year.

Staying Socially Connected Can Help With Chronic Pain

By Jill Suttie, Greater Good Science Center

Many people live with chronic pain. Whether it’s from injury or illness, chronic pain can affect a person’s mood, relationships, work productivity, and more, making it difficult to enjoy daily life.

Unfortunately, getting pain relief can be a complex process. One reason is that it involves both physiological and social-psychological factors — meaning, pain doesn’t just come from having a fever or breaking your arm, but other things happening in your brain, body, and environment. For example, your experience of pain can be lessened by things like distraction, listening to music, or practicing mindfulness meditation.

As researcher Laura Case of the University of California, San Diego, explains, “There’s no one-to-one relationship between activation of sensory nerves and your experience of pain or touch… Though there’s debate about which brain areas correspond to our final pain experience, all of the main players are interconnected with cognitive and emotional brain areas.”

Now a new study that she coauthored with Jennifer Baumgartner suggests another potential influence on pain: feeling socially connected.

A Sense of Belonging Helps

This new study reanalyzed measures collected in an earlier study, in which a group of chronic pain sufferers had been randomly assigned to an intervention shown to reduce pain (sleeping with a heavily weighted blanket) or to a control condition (sleeping with a slightly weighted blanket, which is considered non-therapeutic). After sleeping with their assigned blanket for a week, changes in people’s pain levels were assessed, and the two groups were compared to each other.

In the earlier study, the pain sufferers had also reported on their anxiety and depression symptoms, levels of loneliness, and sense of social connectedness—not how many social connections they had currently, but how generally close they were to other people and how strongly they experienced a sense of belonging. But these had not all been analyzed to see how they related to pain and pain relief from the blankets. That’s where the new study came in.

The new findings showed that people who were more socially connected experienced less pain than those who were less socially connected. After taking into account differences in expectations for pain relief and people’s initial pain levels, those who were socially disconnected felt more pain relief from the weighted blanket than from the lighter blanket, while more socially connected people received equal pain relief from both blankets.

For Baumgartner, these findings suggest that having a sense of belonging provides some level of protection against pain, regardless of any blanket intervention.

“Social support is really important for things that could potentially be threatening, such as stress or pain,” she says. “Having an internalized feeling of being connected with people has an effect on our physical sensations.”

Why would a sense of belonging help with pain? Neither Case nor Baumgartner is sure why.

However, in their study, people who were more socially connected had less anxiety, which could be a factor. Socially connected people probably feel safer and less anxious, says Baumgartner, because they know they can lean on others for support when they’re hurting. Less anxiety means less vigilance around unpleasant bodily sensations, which could decrease their experience of pain.

“Anxiety is strongly coupled with pain, exacerbating people’s surveillance of pain within their body,” she says. “So, having less anxiety is protective—no matter what intervention you receive.”

Case, who studies tactile sensations, says that positive social touch — like receiving a friendly hug or massage — has been shown to reduce pain sensation, and people who are more socially connected likely experience more of those types of touch. Someone who doesn’t have that in their lives much may crave soothing tactile pressure, which is why the weighted blankets can help somewhat.

“If you have difficulty feeling close to others, maybe there are some sensory ways to get around that and help your pain,” she says. “Deep pressure is calming, because it’s associated with the safety of being close to someone else, of being held and protected.”

The Power of a Big Hug

Surprisingly, feelings of depression didn’t seem to affect the relationship between social connection and pain, even though depression has been tied to pain in other research. While this study’s finding might prove to be an outlier, it could also suggest that the hyper vigilance accompanying anxiety is more impactful on pain than feeling down.

Either way, it appears that social connection matters when it comes to pain. However, that can’t be manipulated in an experiment. Baumgartner explains that this trait tends to develop early in childhood and may be tied to general attachment styles (secure, anxious, or avoidant). Since these are not easily changed, it’s good to have a useful, non-pharmacological treatment for pain relief in those without good social connectivity, like the weighted blanket.

“The weighted blanket doesn’t involve any sort of social situation at all, but it still seems to have the ability to help people, to some extent,” says Baumgartner. “Though there haven’t been enough rigorous studies done yet, I’m pretty optimistic that a weighted blanket could serve as an alternative or an adjunct to pain treatment—or maybe even a strategy to prevent people from getting chronic pain in the first place.”

Case says that it could substitute in some ways for what’s missing for people when they tend to be avoidant of others.

“Just anecdotally, people [in the study] found a weighted blanket tended to make them feel like they’re getting a big hug, and it’s relaxing and calming,” she says. “A weighted blanket isn’t a cure for chronic pain, and it’s not going to help everyone. But some people in our study did find it valuable.”

Case and Baumgartner’s study adds to a growing body of research showing how important social connectedness and social touch are for our health and well-being — something that’s been getting more attention in recent years. In fact, in a recent advisory report, the U.S. Surgeon General, Vivek Murthy, argued that our country is facing a “loneliness epidemic” that is affecting our health and longevity and that we need to create more opportunities for people to connect and build a sense of belonging in their lives.

Now, we know that social connection may also help those who suffer from chronic pain.

“Psychosocial factors are not peripheral to someone’s sense of chronic pain; they are central,” Baumgartner says. “Connecting with people and seeking out positive, healthy connections within your social environment is critical.”

This article originally appeared on Greater Good, the online magazine of the Greater Good Science Center at UC Berkeley.

Colostrum: A Regenerative Hormone for Arachnoiditis

By Dr. Forest Tennant, PNN Columnist

Persons with adhesive arachnoiditis (AA) and other severe painful conditions such as Ehlers-Danlos syndrome (EDS) have multiple tissues that become damaged, painful and dysfunctional.

Healing those damaged tissues and reversing the pain and neurologic impairments will require regenerative hormones. This is in contrast to other types of hormones that control inflammation (cortisone), metabolism (thyroid) or sexual functions (estradiol).

The human body makes some natural regenerative hormones, and they are now available for clinical use. Our first realization of their value in treating AA was with human chorionic gonadotropin (HCG). Other regenerative hormones that can be used to treat AA include colostrum, pregnenolone, dehydroepiandrosterone (DHEA), nandrolone, and human growth hormone (HGH). We have used all of these and believe that persons with AA should use at least one of them. But our first choice is colostrum.

Colostrum is in mother’s milk produced during the first few days after birth. It contains high levels of tissue growth factors, anti-inflammatories, pain relievers, and anti-infectious agents. Its natural purpose is to allow the newborn baby to initiate growth, protect against infection, and provide pain relief from the trauma of birth.

Colostrum supplements are sold by a number of companies and are usually made from the milk of cows that have recently given birth. Colostrum is recommended for use at least 3 to 5 days a week by persons with AA or EDS, who may wish to double the labeled recommended dosage. Colostrum is non-prescription, relatively inexpensive, and has few side effects. It can be taken with opioids and other drugs.

Regenerative hormones work best when they are used simultaneously with a high protein diet, collagen or amino acid supplements, vitamin C, B12, and polypeptides.

If a person with AA is not doing well or deteriorating, we recommend adding a second regenerative hormone such as nandrolone. A significant reversal of AA symptoms may require one or more regenerative hormones.

Several times a week we get inquiries from people who have just been diagnosed with AA and are pleading for information on what to do. 

The Tennant Foundation recently published an inexpensive short handbook for persons with newly diagnosed AA that gives a step-by-step plan that can hopefully slow progression of this disease.

If you have had AA for a while and aren't doing well, you may still benefit from some of our most up-to-date knowledge and recommendations in the “Handbook for Newly Diagnosed Cases of Adhesive Arachnoiditis.”

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.  

Cannabis Study Finds ‘Significant Improvements’ in Physical and Mental Health

By Pat Anson, PNN Editor

The use of medical cannabis was associated with “significant improvements” in physical and mental health in a large survey of Australian adults suffering from chronic pain and other health problems.

Over 3,100 people participated in the survey. Chronic non-cancer pain was the most common condition reported (68.6%), followed by cancer pain (6%), insomnia (4.8%) and anxiety (4.2%).  

Australia has relatively stringent rules for medical cannabis. Patients have to exhaust all other forms of treatment and consult with a physician, who reviews their medical history and suitability for cannabis before writing a prescription.

Most of the prescriptions for survey participants were for cannabis products taken orally, such as oils and capsules, with only a small number for dried cannabis flower. About 80% of the cannabis products were rich in cannabidiol (CBD), with the rest dominant in tetrahydrocannabinol (THC) or a balanced mix of CBD and THC.

Patients were asked to rate their wellness and quality of life in eight categories on a scale of 0-100, including general health, body pain, physical functioning, physical limitations, mental health, emotional limitations, social functioning and vitality. The surveys were conducted at the start of the study and then every 45 days after cannabis therapy was initiated, with a total of 15 follow up surveys.   

The study findings, recently published in JAMA Network Open, showed sustained improvement in all eight wellness categories after participants started taking cannabis, with body pain improving an average of 10 to 15 points on the 100-point scale. Researchers also found “pronounced and statistically significant improvements” in mental, social and emotional health.

“This study suggests a favorable association between medical cannabis treatment and quality of life among patients with a diverse range of conditions. However, clinical evidence for cannabinoid efficacy remains limited, and further high-quality trials are required,” wrote lead author Thomas Arkell, PhD, a psychopharmacologist at the Swinburne University of Technology in Melbourne.

Adverse events such as sleepiness and dry mouth were relatively common during cannabis therapy, but were usually mild or moderate.

Before starting cannabis therapy, patients were taking an average of nearly five medications a day, the most common being simple analgesics (54%), opioids (48%), antidepressants (45%), benzodiazepines (34%) and gabapentinoids (22%). The study did not examine if medication use declined once participants started taking cannabis.  

“While we cannot exclude the possibility that adverse events may have been caused in whole or part by the disease state and concomitant medications, the relatively high incidence of adverse events still affirms the need for caution with THC prescribing and careful identification of patients with contraindications,” Arkell wrote.

Medical cannabis was legalized in Australia in 2016. Since then, over 332,000 Australians have been given cannabis prescriptions, mostly for chronic pain (55%), anxiety (23%) and sleep disorders (6%).

Pain management experts in Australia have long taken a dim view of cannabis. In 2021, the Australian and New Zealand College of Anaesthetists released new guidance urging doctors not to prescribe medical cannabis for chronic non-cancer pain because of a lack of good quality research.

Pain Care Should Be Individualized, Without Interference from Others

By Barby Ingle, PNN Columnist 

Trigeminal neuralgia, arachnoiditis, Ehlers Danlos syndrome and Complex Regional Pain Syndrome (CRPS) have all been called the “suicide disease” – the worst pain possible. But saying which disease or condition causes the most pain is subjective because people experience pain differently.  

  • According to U.S. News & World Report, passing a kidney stone is one of the most painful medical conditions you can have.  

  • News Medical Life Sciences lists sickle cell disease as one of the 20 most painful chronic conditions, with episodes of pain occurring when sickle-shaped red blood cells block small blood vessels.  

  • McGill University in Canada has a “pain index” based on a questionnaire that asks people to describe what kind of pain they experience. The index consistently lists CRPS as the worst known pain to humans.

  • Verywell Health reports that fibromyalgia is one of the most common pain conditions, affecting 10 million people in the U.S. and causing widespread body pain, sleep problems, fatigue and distress.  

After living with multiple pain conditions for over 20 years and speaking with tens of thousands of other patients, I no longer believe it matters which type of pain a person has or who has the most pain. We all experience pain. How much pain we feel depends on the individual and a host of other factors, such as genetics, life experiences, and whether effective treatment is available and affordable. That is what matters.

When we do not manage pain effectively, suicides go up. We also see drug abuse and misuse rise. According to a report by the National Institute on Drug Abuse, about 5% to 7% of drug overdose deaths in the U.S. are intentional suicides. Many of those deaths are pain patients.

Since 2011, we have seen a steady decrease in opioid prescribing. Be it acute or chronic, providers are weary of prescribing opioids for pain. It’s not because opioids don’t work. More often than not, the reason they stop prescribing is because they have invested so much into becoming a provider (education, cost, time, family and social connections) that they are now at risk of losing due to laws and medical guidelines based on misleading information about opioids. 

We need to get away from the generalities of treating pain and into individualized patient care. It may or may not involve pain medication, surgery, implants, cognitive therapy and other treatments. For those who have the audacity to say that anyone else should remain in pain because you are not comfortable with their form of treatment -- shame on you.

I have chosen not to use opioids for over 10 years because I have other options that work for me. I want all people to get whatever treatment they need to control their pain. It will be different for each of us and whatever condition or comorbidities we live with. We all need and deserve to get the care we choose after careful consideration, research and discussions with our providers. Laws and guidelines should not be used to take away medications that have been available since the beginning of time.

At a recent pain education event I attended, I heard the argument that there were no long-term studies on the use of opioids for pain. But there are millions of patients who have taken opioids safely for years who will tell you otherwise. Opioids actually gave them more life, because they were able to work, exercise and function when their pain was properly managed.

As a pain patient myself, I want the freedom to do what is best for me. I am currently working on getting access to ketamine infusions again after my ketamine clinic closed down. I want that same right in selecting treatment to be available to others. It should be left to patients and their providers to decide on treatment, without interference from others.

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 

The Fading Power of the White Coat

By Carol Levy, PNN Columnist

I wrote a column in 2018 about the arrogance and poor listening skills of some doctors ("Tyranny of the White Coat”). I ended it with these words: It’s a sad state of affairs when you take a liking to a doctor because they took the rare action of actually listening, hearing and respecting their patient.”

Most physicians see the exam room as a teeter-totter; the doctor sitting high up on one side and the patient below them on the ground. That is often still the case, but I notice when I go to blogs written by doctors (such as KevinMD), that they often write about the loss of respect they find almost everywhere.

Doctors no longer have the “power of the white coat.” In public settings such as hospitals and restaurants, the staff no longer looks at them in awe or bow down to their titles: “Yes doctor, your table is waiting for you.”

I understand the sadness from losing status as the top gun, but I thought most doctors went into medicine to help their patients, not for the superiority their degree gives them. I thought the work they put in at medical school was to learn their craft, not to use as a banner of privilege: “I spent years in school and had to work very, very hard to get where I am. Therefore, I deserve to be looked at as superior.”  

I also go to blogs written by patients, many with chronic pain, and I read the opposite: “How dare these 'doctors' think they're so much better than me? I shouldn't have to be obeisant to them, yet that's what they want from me.”

What if we didn't have the hierarchy of the exam room? What if we were able to come together as patients and doctors, to have a round table or focus group where we could talk freely? How educational that would be, for both sides.

We could then look at doctors as our equals and they could see us in the same way -- not someone to be talked down to. Too many doctors seem to believe we are uninformed, misinformed or just ignorant, and need to be spoken to like a 12-year-old.

We might then see the doctor as a person, someone with more knowledge and experience with our diseases and disorders. Someone who can be a helper, not a protagonist. We could then see them as teachers, which in many ways they are.

What a great appointment that would be. We’d smile at each other and see one another as human.

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

Chatbot ‘Doctor’ Preferred Over Real Ones

By Crystal Lindell, PNN Columnist

Would you rather get your medical advice from a human physician or a chatbot powered by artificial intelligence?

According to an unusual study recently published in JAMA, you’d be better off listening to the chatbot, which gave advice that was rated significantly better both in quality and empathy.  

A team of researchers asked the chatbot -- called ChatGPT – 195 hypothetical questions a patient might ask that were posted online in a Reddit forum called "Ask a Doctor."  A team of healthcare providers then compared the chatbot’s responses to those posted by actual physicians in the same forum.

The responses from ChatGPT were the clear winners. The evaluators preferred the chatbot responses over the physicians’ answers about 79% of the time. The average rating for the chatbot was "better than good," while the physicians overall were given a lackluster grade of "acceptable response."

The evaluators also gave the ChatGPT high marks for empathy, while the physicians’ responses were rated as only “slightly empathetic.”

One of the hypothetical questions involved a patient who accidentally swallowed a toothpick and wanted to know if they were at risk of dying. Here’s how the chatbot and a physician responded:

Physician Response:

If you've surpassed 2-6 (hours), chances are they've passed into your intestines. Which means it can't be retrieved easily.

Many people can swallow razorblades and toothpicks without issues. In case you develop stomach ache, then don't hesitate seeking out an emergency room, and remember to point out the swallowed tooth pick. For now, they won't be doing much.

Chatbot Response:

It's natural to be concerned if you have ingested a foreign object, but in this case, it is highly unlikely that the toothpick you swallowed will cause you any serious harm.

Toothpicks are made of wood, which is not toxic and will not cause poisoning. However, it is possible for a toothpick to cause injury if it becomes stuck in the throat or if it punctures the digestive tract. However, this is unlikely to happen with a dull, cooked toothpick that is only 2 cm long.

If you are experiencing any discomfort or symptoms such as abdominal pain, difficulty swallowing, or vomiting, it is important to contact a healthcare provider for further evaluation. However, if you are not experiencing any symptoms, it is safe to assume that the toothpick has passed through your digestive system, and you do not need to be concerned.

It's always a good idea to be cautious when consuming food and to remove any foreign objects before eating. It's understandable that you may be feeling paranoid, but try not to worry too much. It is highly unlikely that the toothpick will cause you any serious harm.

Which answer would you rather get as a patient? The evaluators preferred the chatbot’s response to the toothpick question, as they did for other questions about a head injury, a lump possibly being cancerous, and if getting bleach in your eye might cause blindness. The chatbot response to those questions also got high scores for empathy.

As a chronic pain patient, I have to admit I felt a little smug when I first saw the headlines about this research. My initial thought was, of course, the chatbot was more empathetic than the doctors! Doctors are often mean, rude and dismissive. I even wrote a column about using a weird trick to manage their egos.

Is this the beginning of the end for human doctors? The short answer is: No. This was a very narrow study with a number of limitations. The authors said they were only trying to look into the possibility of physicians using artificial intelligence (AI) to essentially ghostwrite responses to patients.  

“Chatbots could assist clinicians when messaging with patients, by drafting a message based on a patient’s query for physicians or support staff to edit,” they said. “Such an AI-assisted approach could unlock untapped productivity so that clinical staff can use the time-savings for more complex tasks, resulting in more consistent responses and helping staff improve their overall communication skills by reviewing and modifying AI-written drafts.”

The possibilities for using AI in medical settings are only just emerging, and it could radically change how we think of healthcare and how doctors think of us.

One thing that might improve is how doctors and patients communicate. I know doctors are capable of giving more empathetic answers on their own. The problem is, in the United States at least, they usually just don’t have the time to do so. If AI can help, we should let it.  

However, it should be noted that several authors of the study, which was led by researchers at the University of California San Diego, disclosed ties to the artificial intelligence industry, which means they may financially benefit from any attempts to sell AI to medical professionals.

Also, as the researchers acknowledge, the study doesn’t prove that chatbots are better doctors than actual doctors, just that their answers were better. Physicians would likely respond to medical questions differently in an office setting, as opposed to an online post.

Researchers also did not assess the chatbot responses for accuracy — which is a pretty big deal when it comes to medical care. It’s one thing to write an empathetic reply, it’s another to correctly diagnose and decide on a treatment.

That said, when comparing the various responses, the chatbot did seem to give similar advice as the doctors, which makes me think they were mostly accurate. That may not sound great, but consider how often doctors are wrong. Medical errors are one the leading causes of death in the U.S.

AI technology is rapidly improving, and it’s impossible to predict what it will be capable of in the coming years. But I do believe it’s going to radically change many aspects of our lives, including healthcare. Hopefully, it makes it better. But at this point, I’ll settle for not making it worse.  

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. 

Should I Laugh or Should I Cry?

By Mia Maysack, PNN Columnist

Right now, I’m having one of those moments when the pain level is so high, it's almost unbelievable. It made me remember when a fellow chronically ill friend shared a story about her time in a grocery store.  She said that it felt as though a knife was cutting her open, all while she was just attempting to buy a few things.

Her response to this experience was laughter!

Perhaps you've heard the saying, "Should I laugh or should I cry?" Personally, I feel as though there's something to that. As I write this, I'm turning to the written word as my savior and deliverer from the wretched flare I'm in the midst of. I can barely see, let alone keep thoughts straight in my mind. But I'm choosing to smile, at least on the inside, because I'm thinking of my friend.

She said she laughed because it was comical in that moment -- her essentially feeling like the walking dead but having to function normally in a public place. No one else in the store could possibly know the inner crisis she was having. 

I can attest to this sort of thing making me feel a little crazy. Perhaps what helps to push us toward the bright side is the madness that's produced along the way. 

It’s been said that laughter is the best medicine. I've yet to have an ailment cured by laughing, but it's important to remember that despite our health or hardships, we possess a playful side. We are more than just a condition or diagnosis, there are other aspects of our identities. We're not what has occurred to us; what we are becoming is a result of our choice.

I'm choosing to laugh about the fact I've been attempting to get in touch with a provider, but cannot seem to get a call back. A previous appointment with the provider was so draining it left me feeling worse than I did upon arrival. It's all a reminder of how much it took to reach out to the provider in the first place, and the countless other let downs when the healthcare system falls short, which is most of the time. Healthcare is a joke and patients are often the punchline.

A common response to a person who is struggling is to advise them to seek help. That is a valid suggestion, but if “help” is the remedy, then it must be available and within reach.

We need to see what we need within ourselves, not to solely exist, but to excel in our experiences -- as opposed being dependent on systems that don’t serve our interests.

An example:  Recently when the exact opposite thing I felt like doing was grinning, I beamed in an effort to trick my brain into stimulating an increase in endorphins. This technique is readily available to me at any point, plus it’s free and doesn’t cause any adverse side effects! 

Laughter is another great way to assist in boosting mood, as is exercise to any extent that’s doable. The idea is to consciously work to counteract the pain signals that are firing as best we can, while living with unmanageable pain of one sort or another. 

Presently, I am choosing to be mentally mindful and to rejoice in breathing. This is how I prevail. I also find solace in knowing that what I’ve already endured will give me the strength I’ll need to face whatever is coming. Until then, I’ll strive to greet every moment that tests me with a smile. 

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. 

‘No Reliable Evidence’ That Antidepressants Work for Chronic Pain  

By Pat Anson, PNN Editor

Medical guidelines in the United States and United Kingdom may recommend antidepressants for treating chronic pain, but there is “no reliable evidence” that the medications actually work for that purpose, according to a new Cochrane review.

Cochrane reviews are considered the gold standard in medical research because they use robust methodology to gather good quality evidence, while dismissing poor quality research.

A team of UK researchers, led by scientists at the University of Southampton, spent two years examining 176 clinical trials involving nearly 30,000 patients who were prescribed antidepressants for pain. Among the drugs studied were fluoxetine (Prozac), sertraline (Zoloft), amitriptyline (Elavil), milnacipran (Savella), citalopram (Celexa), paroxetine (Paxil) and duloxetine (Cymbalta).

“Our review found no reliable evidence for the long-term efficacy of any antidepressant, and no reliable evidence for their safety for chronic pain at any point. Though we did find that duloxetine provided short-term pain relief for patients we studied, we remain concerned about its possible long-term harm due to the gaps in current evidence,” said lead author Tamar Pincus, PhD, a Psychology Professor at the University of Southampton.

“This is a global public health concern. Chronic pain is a problem for millions who are prescribed antidepressants without sufficient scientific proof they help, nor an understanding of the long-term impact on health.”

In the United States, duloxetine is FDA-approved for fibromyalgia, diabetic neuropathy and musculoskeletal pain. The recently updated CDC guideline recommends that duloxetine and other SNRI antidepressants be used for fibromyalgia and neuropathy, because they provide “small to moderate improvements in chronic pain and function.”

The UK’s National Institute for Health and Care Excellence (NICE) guideline goes even further, stating that antidepressants are better than opioids and other analgesics in treating fibromyalgia, chronic headache, Complex Regional Pain Syndrome (CRPS), musculoskeletal pain and other types of “primary chronic pain” for which there is no known cause.   

The authors of the Cochrane review say regulators in the US and UK should reconsider their recommendations.

“We are calling on governing health bodies NICE and the FDA to update their guidelines to reflect the new scientific evidence, and on funders to stop supporting small and flawed trials. Evidence synthesis is often complex and nuanced but the evidence underpinning the use of these treatments is not equivalent, so current treatment modalities are hard to justify,” said co-author Gavin Stewart, PhD, a statistician at Newcastle University.

Amitriptyline is one of the most commonly prescribed antidepressants for chronic pain in the world. In the last year, around 10 million prescriptions for amitriptyline were given to patients in England for pain, about twice the number prescribed for depression. Many other antidepressants are also prescribed “off-label” for pain, despite limited evidence to support their use.

“Though previous investigations show that some antidepressants might relieve pain, there has never been a comprehensive study examining all medications across all chronic conditions – until now,” said co-author Hollie Birkinshaw, PhD, a Research Associate at the University of Southampton.

“The only reliable evidence is for duloxetine. Adopting a person-centered approach is critical to treatment and, when patients and clinicians decide together to try antidepressants, they should start from the drug for which there is good evidence.”

The reviewers say duloxetine was the highest-rated antidepressant for treating fibromyalgia, musculoskeletal and neuropathic pain. Standard doses of duloxetine were just as effective as higher ones. Milnacipran was also effective at reducing pain, although the evidence was weaker.

“We simply cannot tell about other antidepressants because sufficiently good studies are not available – but it does not mean that people should stop taking prescribed medication without consulting their GP,” said Pincus.

A common complaint of patients who take duloxetine is that it makes them dizzy and nauseous. Many quickly become dependent on the drug and then have severe withdrawal symptoms when they stop taking it.

Several previous studies have also raised questions about using antidepressants for pain. A recent review of over two dozen clinical trials by Australian researchers found little evidence to support the use of antidepressants in pain management. Nearly half of the trials had ties or funding from the pharmaceutical industry.

Long Covid May Affect Genes Involved in Pain Signaling

By Pat Anson, PNN Editor

About 16 million people in the United States have Long Covid, a poorly understood disorder that causes body aches, headaches, fatigue, insomnia, brain fog and other symptoms long after an initial infection with COVID-19. For some, the symptoms are mild, but for other they are so severe they become disabling.

Why do some people quickly recover from Covid, while about one in five have lingering symptoms?

A new animal study found that thousands of genes involved in nervous system function are affected by SARS-CoV-2, and may cause lasting damage to dorsal root ganglia, the spinal nerves that carry pain and other sensory messages to the brain. Scientists believe that genetic damage may be what causes Long Covid.

“Several studies have found that a high proportion of Long Covid patients suffer from abnormal perception of touch, pressure, temperature, pain or tingling throughout the body. Our work suggests that SARS-CoV-2 might induce lasting pain in a rather unique way, emphasizing the need for therapeutics that target molecular pathways specific to this virus,” explains co-author Venetia Zachariou, PhD, chair of pharmacology, physiology & biophysics at Boston University’s Chobanian & Avedisian School of Medicine.

Zachariou and her colleagues infected hamsters with SARS-CoV-2 and studied how it affected the animals’ sensitivity to touch, both during the initial infection and after the infection had cleared. Then they compared the effects of SARS-CoV-2 to those triggered by an influenza A virus infection, and were surprised by what they found.

In the hamsters infected with Covid, researchers observed a slow but progressive increase in sensory sensitivity over time – one that differed substantially from influenza A infections, which caused a sudden hypersensitivity that returned to normal once the initial infection ended.

Although the studies were performed on animals, researchers say they align with the acute and chronic symptoms caused by Covid in humans. They hope further studies on human genes and sensory pathways affected by the Covid virus will lead to new treatments for Long Covid and conditions such as ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome),

“We hope this study will provide new avenues for addressing somatosensory symptoms of long COVID and ME/CFS, which are only just now beginning to be addressed by mainstream medicine. While we have begun using this information by validating one promising target in this study, we believe our now publicly available data can yield insights into many new therapeutic strategies,” adds Zachariou. 

The study findings appear online in the journal Science Signaling.

The federal government’s Covid public health emergency officially ends this week, but the impact of the pandemic will likely be felt for years to come.

What Kind of Pain Care Would JFK Get Today?

By Pat Anson, PNN Editor

This year marks the 60th anniversary of the assassination of President John F. Kennedy, an event that shocked the world. Kennedy was only 46 when he died in 1963.

At the time, Kennedy was widely seen as a healthy, handsome and vigorous man. The truth, which emerged years later, is that JFK was chronically ill almost from birth. Scarlet fever nearly killed him as an infant, and as a child he was thin, sickly, and suffered from chronic infections and digestive problems.

Not until decades after his death did we learn that Kennedy was born with an autoimmune condition called polyglandular syndrome, and that a series of failed back surgeries may have led to adhesive arachnoiditis, a chronic and painful inflammation in his spinal canal. Historians and physicians also confirmed rumors that JFK suffered from Addison’s Disease, a well-guarded family secret.

Kennedy was given the last rites at least twice before becoming president and reportedly told his father that he would “rather be dead” than spend the rest of his life on crutches, paralyzed by pain.

In short, it’s a bit of miracle that JFK even lived to see his 46th birthday. The American public never had a full understanding of his health problems until long after he was dead.

How did Kennedy pull it off? The answers can be found in Dr. Forest Tennant’s latest book, “The Strange Medical Saga of John F. Kennedy.”

“The reason I decided to write it was mainly that I had become aware that he was an intractable pain patient,” says Tennant, a retired physician and one the world’s foremost experts on arachnoiditis and intractable pain. “Fundamentally, my book is really taking a lot of other people's work and putting it together in a historical chronological fashion. I just felt it needs to be done to really understand what happened to him.”

Although Kennedy’s chronic health problems were largely hidden from the public, many of his medical records still exist – a reflection of his family’s wealth and access to the best medical care available. Good doctors keep good medical records, especially when their patients are rich and famous.

“Until I got into doing this, it was not appreciated by me. Unless a person is very famous and has a lot of medical records, physicians never get to see a case from start to finish. Meaning from birth to death. I've never really realized how rare that is,” says Tennant.

A Controversial Drug Cocktail

In the mid 1950’s, Kennedy found a team of innovative medical experts who helped relieve his pain, elect him as president, and achieve his best health ever while living in the White House.

Dr. Max Jacobson put Kennedy on a controversial “performance enhancing” cocktail. The ingredients were secret, but Tennant says the cocktail probably included methamphetamine, hormones, vitamins and steroids.

Exhausted from months of campaigning, Kennedy was injected with the cocktail just hours before his first debate with Richard Nixon, a nationally televised debate that likely won the election for Kennedy because he appeared more energetic than Nixon.

Kennedy continued taking the cocktail as president, over the objections of White House physicians.

High Dose Opioids

Dr. Janet Travell also played a key role in revitalizing Kennedy’s health, putting him on a comprehensive pain management program that included physical therapy, hormone replacement, anti-inflammatory drugs, and the opioids methadone, codeine and meperidine (Demerol).

One of the first things she noticed was the callouses under Kennedy’s armpits from using crutches so often.

“On the day she met him, she put him in a hospital and started methadone that day, as a long-acting opioid, and then she also had him on Demerol and some other miscellaneous opioids. But his two main opioids were methadone and then Demerol for breakthrough pain,” said Tennant.

The precise dosage given to JFK is unknown, but Tennant estimates it was initially 300 to 500 morphine milligram equivalents (MME) a day, a level that would be considered risky under the CDC’s 2016 opioid prescribing guideline. The guideline recommended that dosages not exceed 90 MME.

“It would have exceeded the CDC guidelines by far,” says Tennant. “The methadone dose would have exceeded the CDC guidelines itself. But she knew to put him on methadone and if it hadn't been for methadone, he’d never have been president. He had to have something to stabilize himself right at that time. And he had to have a second opioid for breakthrough pain.”

Dosages that high today would likely attract the attention of the Drug Enforcement Administration, which investigates and prosecutes doctors for writing high-dose prescriptions. Tennant himself came under scrutiny from the DEA for giving intractable pain patients high doses, and his office and home were raided by DEA agents in 2017. Tennant was never charged with a crime, but he retired from clinical practice a few months later.

Raids like that have had a chilling effect on doctors nationwide. Many now refuse to see pain patients on opioids, regardless of the dose.

“JFK would not have been welcome today in pain clinics,” says Tennant. “My patients were very similar to JFK, almost same disease, same kind of doses, and the same kind of therapies. And of course, today that is taboo. But that was the standard in the 1950’s.  

“It's only been in the last few years that the government has decided that the standard treatment that has been there for half a century is now almost a crime.”

Dr. Travell never came under that kind of scrutiny, but Dr. Jacobsen did. Dubbed “Dr. Feelgood” by critics for his unconventional treatments, Jacobson’s medical license was suspended in New York state a few years after Kennedy’s death. The 1972 Controlled Substances Act ensured that his cocktail would never be prescribed again.

Tennant says there is no evidence the cocktail harmed or impaired JFK, who was never hospitalized or bed-bound during the 8 years he was under Jacobson’s care.

Without Jacobson and Travell, Tennant believes it unlikely Kennedy would have run for president or been elected.

“That's one of the reasons why I wrote the book. I think people need to know that JFK’s treatment was opioids. And his treatment was the standard of the day, up until the recent fiat by the federal government and state medical boards. The country got along for half a century with those standards quite well,” Tennant said.

In addition to his book about JFK, Tennant has written books about Howard Hughes and Elvis Presley, who also lived with -- and overcame -- chronic health problems.

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