It’s All In Your Head: How Brain Circuitry Causes Placebo Effect

By Crystal Lindell

The placebo effect is very real. But how and why it happens has mostly remained a mystery. 

However, new research may shed light on what exactly is happening in our brains when just the expectation of pain relief is sufficient for people to feel better, even when the pill or treatment they’re taking has no therapeutic value.

The discovery may even lead to new treatment options. 

In studies on laboratory mice, researchers at the University of North Carolina School of Medicine discovered a pain control pathway that links the front of the brain, through the middle region of the brainstem, to the cerebellum in the back of the brain.

They then showed that certain parts of this pathway are activided in mice when they anticipate pain relief. 

“Our results do open the possibility of activating this pathway through other therapeutic means, such as drugs or neurostimulation methods to treat pain,” says lead researcher Greg Scherrer, PharmD, associate professor in the UNC Department of Cell Biology and Physiology, who conducted the study along with colleagues at Stanford, the Howard Hughes Medical Institute, and the Allen Institute for Brain Science. 

The research, recently published in the journal Nature, provides a new framework for investigating the brain pathways underlying other mind-body interactions beyond the ones involved in pain.

“We all know we need better ways to treat chronic pain, particularly treatments without harmful side effects and addictive properties,” Scherrer said. “We think our findings open the door to targeting this novel neural pain pathway to treat people in a different but potentially more effective way.”

How Scientists Studied Placebo Effect

The placebo effect is basically the brain’s way of trying to help us feel better. As such, just the expectation of pain relief is often enough to make our brains release hormones and natural chemicals that provide relief. Positive thinking and even prayer have been shown to provide similar benefits to patients, without the use of medication. 

The scientific community’s understanding of the placebo effect primarily came from human brain imaging studies, which showed increased activity in certain brain regions. However, those studies did not have enough precision to show what was actually happening in those brain regions. 

So Scherrer’s team designed a set of complex experiments to learn in more detail what was happening in the brain.

First, they created a method to generate in mice the expectation of pain relief. Then they used a series of experiments to study the anterior cingulate cortex (ACC) of their brains, which had previously been associated with the placebo effect. 

The experiments helped them see the intricate neurobiology of the placebo effect on the receptors, neurons, and synapses of the brain. When mice expected pain relief, it boosted signaling along the pain pathway.

“There is an extraordinary abundance of opioid receptors here, supporting a role in pain modulation,” Scherrer said. “When we inhibited activity in this pathway, we realized we were disrupting placebo analgesia and decreasing pain thresholds. And then, in the absence of placebo conditioning, when we activated this pathway, we caused pain relief.”

In a 2021 study, researchers had a similar breakthrough when studying the placebo effect. Researchers at Dartmouth University conducted an analysis of neuroimaging studies involving over 600 healthy people who participated in placebo studies. Their findings showed that placebo treatments reduced pain-related activity in multiple areas of the human brain.

FDA Approves Stem Cell Study for Degenerative Disc Disease

By Pat Anson

The Food and Drug Administration has given the go-ahead for a late-stage clinical trial of an injectable stem cell product that could give new hope to millions of patients suffering from lower back pain caused by degenerative disc disease (DDD).  Up to 400 patients with mild to moderate DDD are expected to enroll in the Phase 3 study later this year.

The trial is being conducted by DiscGenics, a Utah-based biopharmaceutical company that is developing new cell-based therapies for musculoskeletal conditions. It’s one of the first late-stage studies of a stem cell product to win approval from the FDA, which has been openly skeptical of cell-based therapies due to lack of evidence proving their safety and efficacy in clinical trials.

The only stem cell therapies currently approved by the FDA are used to treat sickle cell disease and some cancers. Approval of a stem cell product to treat degenerative discs would be a big step forward for regenerative medicine, and give patients an alternative to fusions and other more invasive spinal procedures.

“The FDA has been very familiar with our process, our product, and the chemistry, manufacturing and controls for quite some time,” says Flagg Flanagan, CEO and Chairman of DiscGenics. “We feel really good about where we are in terms of the patient reported outcomes. But most importantly about the safety. We feel like this cell is extremely safe to be used on human patients and we're feeling really, really good that we can help a lot of people.”

Discgenics’ injectable disc cell therapy (IDCT) is a single-injection biologic treatment designed to halt the progression of lumbar DDD by regenerating the disc “from the inside out.” The active ingredients in IDCT are enriched stem cells known as discogenic cells, which are derived from donated adult human disc tissue.

IDCT has been granted regenerative medicine advanced therapy and Fast Track designations by the FDA. Approval of the Phase 3 study came just weeks after Discgenics released positive results from a combined Phase 1/Phase 2 human trial of IDCT, published in the International Journal of Spine Surgery.

In that study, 60 patients with mild to moderate DDD were randomly assigned to receive an injection of either low-dose discogenic cells, high-dose cells, or a placebo. After one year, patients in the high-dose group had an average reduction in pain intensity of nearly 63 percent, along with significant improvements in their disability and quality of life. The regeneration of discs, which was monitored through MRIs and other imaging tests, was sustained two years after the injection.

“Things even came out a little better than we even expected,” Flanagan told PNN. “We showed very good durability, out to two years with the high dose patients. Anecdotally, we continue to follow some of those high dose patients and we have data in a pretty good cohort out to three years. We have a couple (patients) out to four years and the durability still seems to hold pretty well.”

The Phase 3 trial will consist of two parallel studies of IDCT that will also be randomized and placebo-controlled. Like the two earlier trials, each study will last for two years to assess the long-term safety and efficacy of IDCT. The first participants are expected to be enrolled in the final quarter of 2024.

“We'll start looking for patients and reviewing patient profiles that want to apply for the study shortly,” Flanagan said. “I think this is something where we can help many, many patients hopefully avoid a surgical intervention with an injection in a treatment room.”

People interested in getting updates on the Phase 3 IDCT trial or volunteering for it can submit their contact information to DiscGenics here.

Mesoblast, an Australian company specializing in regenerative medicine, recently began enrolling U.S. patients with chronic low back pain in a Phase 3 study of its proprietary mesenchymal stem cells, which are derived from young and healthy adult donors.

Long COVID Risk Declining, Mostly Due to Vaccinations

By Crystal Lindell

Rates of Long Covid appear to have declined over the course of the pandemic, according to new research from the Washington University School of Medicine. One reason is that people who are vaccinated against COVID-19 and its variants have about half the risk of developing Long Covid than those who are unvaccinated.

Long Covid refers to a wide range of symptoms that some people experience four or more weeks after an initial infection with COVID-19. Symptoms such as fatigue, body pain and shortness of breath may last for weeks, months or years, and can be mild or severe.  

While the new research only looked at COVID cases through 2022 – making it unclear how newer COVID strains and vaccines in 2023 and 2024 may be impacting Long COVID cases  – it does provide a ray of hope.

Specifically, researchers attributed about 70% of the risk reduction to vaccination against COVID-19 and 30% to changes over time, such as the evolving characteristics of SARS-CoV-2 and improved detection and management of COVID-19. The research was published in The New England Journal of Medicine.

“The research on declining rates of long COVID marks the rare occasion when I have good news to report regarding this virus,” said the study’s senior author, Ziyad Al-Aly, MD, a Washington University clinical epidemiologist and global leader in COVID-19 research. “The findings also show the positive effects of getting vaccinated.”

Although the latest findings sound more reassuring than previous studies, Al-Aly tempered the good news. 

“Long COVID is not over,” said the nephrologist, who treats patients at the John J. Cochran Veterans Hospital in St. Louis. “We cannot let our guard down. This includes getting annual COVID vaccinations, because they are the key to suppressing long COVID risk. If we abandon vaccinations, the risk is likely to increase.”

For the research, Al-Aly and his team analyzed millions of de-identified medical records in a database maintained by the Department of Veterans Affairs, the nation’s largest integrated health-care system. 

The study included over 440,000 veterans with SARS-CoV-2 infections and more than 4.7 million uninfected veterans. Patients included those who were infected by the original strain, as well as those infected by the delta and omicron variants. Some were vaccinated, while others were unvaccinated. 

The Long COVID rate was highest among those with the original strain, about one in every ten (10.4%). No vaccines existed while the original strain circulated.

The rate declined to 9.5% among those in the unvaccinated groups during the delta era and 7.7% during omicron. Among the vaccinated, the rate of Long COVID during delta was 5.3% and 3.5% during omicron.

“You can see a clear and significant difference in risk during the delta and omicron eras between the vaccinated and unvaccinated,” said Al-Aly. “So, if people think COVID is no big deal and decide to forgo vaccinations, they’re essentially doubling their risk of developing long COVID.”

Al-Aly also emphasized that even with the overall decline, the lowest rate — 3.5% — remains a substantial risk. 

“That’s three to four vaccinated individuals out of 100 getting long COVID,” he said. “Multiplied by the large numbers of people who continue to get infected and reinfected, it’s a lot of people. This remaining risk is not trivial. It will continue to add to an already staggering health problem facing people across the world.”

The World Health Organization has documented more than 775 million cases of COVID-19.

Disabled at Higher Risk of Long COVID  

The CDC recently found that Long COVID symptoms were more prevalent among people with disabilities (10.8%) than among those without disabilities (6.6%).

The new data was released as part of the CDC’s annual update to its Disability and Health Data System, which provides quick and easy online access to state-level health data on adults with disabilities.

The report found data that over 70 million adults in the U.S. reported having a disability in 2022.

Older adults reported a higher disability rate (43.9% for those aged 65 and older) compared to younger age groups. The race/ethnic groups with the highest rate of disability, regardless of age, identified as American Indian or Alaska Natives.

The CDC has fact sheets that provide an overview of disability in each state, including the percentages and characteristics of adults with and without disabilities. Click on any state listed here to view that state’s profile.

The findings underscore the fact that people with disabilities are a large part of every community and population.

Selling Us Short With Long COVID

By Cynthia Toussaint, PNN Columnist

After four years of diligently following CDC guidelines to avoid COVID-19 like the plague, it finally caught up with me. And, like my doctors presumed, I now have Long COVID.

That being said, two months into what I was assured would be worse than a living death, I have to shake my head at how colossally the powers that be underestimate the toughness of women in pain.

After my partner John and I had to cancel a 2020 dream trip to Iceland due to my cancer and the COVID shutdown, we bunkered down because my doctors said I had no wiggle room with chemotherapy – and that likely saved my life.

When I had remission from cancer a second time in 2022, those same doctors shared that while the COVID virus might no longer end me, I’d surely get Long COVID, which would leave me barely able to breathe or move for the rest of my life. This was backed up by many articles and programs that I devoured. I felt doomed.

These were some of my darkest, most dire years – which says a hell of a lot. Already isolated for 44 years from profound disability caused by Complex Regional Pain Syndrome, I felt ever more the odd one out, still wearing a mask and saying no to virtually every invitation.

But with time, the expert prognosis wasn’t adding up – as I watched most of my friends with pain and other chronic illnesses get COVID, only to recover and return to their baseline of “normal.”

Iceland was still beckoning – it’s glaciers, waterfalls, active volcanoes, charming capital city, unique horses and white nights. Come spring this year, my desire trumped all else. I yearned to be amongst the living again, so John and I booked a trip for early June.

We followed the recommended CDC guidelines for travelers, only to land in Iceland sick as dogs. So much for playing by the rules!

Being out of country, we didn’t have any COVID tests, and because we weren’t on our deathbeds as promised, we assumed we’d picked up a run-of-the-mill flu bug.

Flinging off our high temps, chills and fatigue (to name just a few of our symptoms), there was no staying in bed slurping chicken broth and taking Tylenol for us. We muscled on through our trip – and fell in love with this other-worldly land.

Testing Positive

A couple days after our return, John took what I considered a pointless COVID test – and I was floored when he shouted that we’d joined the ranks of the infected by testing positive. More surprising, on day ten of what was supposed to be a worse-than-death sentence, I was functioning fairly well. I could breathe fine and was swimming most of my laps. No hospital, no ventilator, no ICU, no death certificate.

Yes, I’ll give the docs a point or two, if you’re keeping score at home. Eight weeks post-infection, I’ve developed the aforementioned Long COVID, which has triggered my chronic fatigue syndrome, accompanied by a litany of life-compromising symptoms that ebb and flow.

Sometimes I feel fine and other times I uncharacteristically fall asleep from post-exertion malaise. I’m burdened by debilitating migraines and dizziness, and am still hoarse and wonder when I’ll be able to sing clearly again. Still, unless something changes drastically, long-hauling didn’t come as advertised.   

So now I’ve moved from fear of the worst to hope for better days ahead. But with that hope, I’m still mightily pissed off.

I’m livid that doctors and researchers put me into a catastrophic, doomsday mindset during the pandemic. The picture they painted for people like me -- with high-impact chronic illness and a cancer diagnosis -- was black as ink, with no exceptions.

I lived accordingly with terror, dread, fear, high-anxiety and isolation-induced depression. Missed holiday events, get-togethers and no traveling rounded out the experience.

Not being around people, while going through cancer twice, was the apex of these dark years. That inhumanity strained my ability to heal when I needed it most.

Humans are social creatures and inclusion is how we’ve evolved so that we can feel safe, contented and well. Without connection, our mental health suffers, which is just as important as our physical health.

I’m now critically reassessing the necessity of my “bunkering years.” Were they needed? Or did I spend four and a half years of my hard-fought-for life alone for no damn good reason?

CYNTHIA GREETS A FRIEND IN ICELAND

I recently met two lovely women, both with pain and autoimmune issues, who recovered from Long COVID in less than a year, no worse for the wear. I wonder why none of the experts told me that recovery was a possibility, even a likely one. Why was I only given the worst-case scenario? Safe to say if I’d had the facts, I would have poked my head out of the hole far sooner than I did. And when you’re still in the red zone with cancer, every day, every outing COUNTS.

While it’s super hard to watch friends and family recover quickly from COVID, while I trudge on sick and with no end in sight, we with high-impact pain know our lot is always a ton more challenging than normies. That’s money in the bank, a sure bet. Luckily, we’re experts at suffering and coming out the other side.  

But let’s not bury the lead. I’m freer than I’ve been in years. These days I’m doing less mask wearing, so bring on the intimate get-togethers in a cramped, under-ventilated house (ok, ok, maybe after the summer surge next to an open window.) Hugging, kissing and touching those near and dear are back on my to-do list.

Before COVID, John would joke: “I always know when Cynth’s worked a room – because everyone’s got lipstick on their face.” Going forward, look out for the high-gloss and ruby red.       

Whoa, Nelly! Let me be clear. How one takes on COVID is an individual experience – and I respect everyone’s choice. I know women in pain who’ve never put a mask on or vaccinated, and others who plan to mask-up for the rest of their lives while counting the days till the next booster.

We all need to do what makes us feel safe. And, like me, sometimes our choices change with time and information.       

My smile has a deeper meaning these days. Exiting my Y just after our return from Iceland, a friend I adore at the front desk, Solange, excitedly commented, “You look much better, Cynthia!”

I had to laugh, while sharing that I was still getting over COVID. When she quizzically stared, it then hit me. I wasn’t wearing a mask!

A moment of wow struck us both. I’ve known this woman for two years and we’ve shared countless conversations, but that was the first time she’d ever seen my face.              

Women in pain, we’re tougher than the rest. The doctors, the researchers, the experts, the “know-it-alls” always seem to sell us short, either under-protecting because they think we make a mountain out of molehill – or over-protecting because they don’t think we know what’s in our own best interest.

Screw ‘em. They don’t get us, never will. And a once-in-a-century pandemic isn’t going to knock us out. That’s something to smile about.   

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 multiple co-morbidities for over four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.” 

Genes May Explain Why Gabapentin Works for Some Pain Patients

By Pat Anson

Over the years, gabapentin (Neurontin) has been prescribed for dozens of health conditions, from epilepsy and fibromyalgia to depression and post-operative pain. It’s even been used to treat bipolar disorder. Gabapentin has been marketed for so many different conditions – at times illegally -- that a pharmaceutical company executive infamously referred to the drug as “snake oil.”

Even though it’s been approved for medical use for over 30 years, the UK’s National Health Service admits it’s still “not clear exactly how gabapentin works.”

A new study may finally help explain why gabapentin is an effective pain medication for some patients and an addictive drug with unwelcome side effects for many others.

It could be all in the genes.

Researchers at the University of Edinburgh took another look at a previous study of women with chronic pelvic pain to see why gabapentin worked no better than a placebo for most, but was a moderately effective pain reliever for about 40% of them.

Researchers took saliva samples from 71 women who participated in the study -- 29 who responded to gabapentin and 42 who had no improvement -- and found that the responders were more likely to have a variation of the gene Neuregulin 3 (NRG3). The gene is primarily expressed in the brain, spinal cord and central nervous system, and helps regulate pain sensation and transmission.

The findings, recently published in the journal iScience, may explain why gabapentin works for some women with chronic pelvic pain.

"A genetic factor that can predict how well gabapentin will work in patients offers the prospect of tailored treatment, and provides invaluable insights into understanding chronic pain. We hope eventually to use this genetic marker to optimize personalized treatment decisions and minimize adverse effects for women with chronic pelvic pain," wrote lead author Scott Mackenzie, MD, from the University of Edinburgh's Centre for Reproductive Health.

The study also has implications for other chronic pain conditions. Further research is needed to confirm the findings, but researchers say a genetic test for NRG3 could help limit the use of gabapentin to people who actually benefit from the drug.

"Isolating this single genetic marker is an important discovery that could ultimately help refine treatments for millions of women worldwide who suffer from chronic pelvic pain, as well as increasing our understanding of its role in other pain conditions. We believe this is an exciting opportunity for collaboration with a commercial partner who can help translate the research into a clinical setting," said Susan Bodie, PhD, Head of Business Development for the College of Medicine and Veterinary Medicine at the University of Edinburgh.

Gabapentin and other nerve drugs like pregabalin (Lyrica) have come under increased scrutiny in the UK because they are increasingly involved in overdose deaths.  

A recent analysis of drug tests suggests that gabapentin is also being misused in the U.S. Gabapentin was found in in over 13% of urine samples that tested positive for fentanyl -- about twice the number of drug tests in which prescription opioids were found.

Despite the risks of side effects and addiction, gabapentin is increasingly prescribed “off-label” for conditions it is not approved to treat, such as dental pain. A 2019 study found little evidence that gabapentin and pregabalin should be used for pain and said their effectiveness was often exaggerated by prescribing guidelines.

The CDC’s revised opioid guideline says gabapentin and pregabalin can have “small to moderate improvements” on pain, but with a moderate risk of side effects.

Feds Warn About Copycat Packaging of Delta-8 THC Edibles

By Crystal Lindell

The U.S. government is once again going after companies that sell Delta-8 THC edibles in packaging that looks like popular brand name candy and snacks. 

The Food and Drug Administration and the Federal Trade Commission sent warning letters to five companies for selling copycat food products containing delta-8 THC derived from hemp.

For example, one company was selling a package of “Slizzles” edibles that looks strikingly similar to “Skittles” candy. Another company sold a “Double Stuff Stoneo” product in packaging that looks like “Oreo” cookies. 

The cease and desist warning letters were issued to Hippy Mood, Earthly Hemps, Shamrockshrooms, Mary Janes Bakery and Life Leaf Medical CBD Center

“Inadequate or confusing labeling can result in children or unsuspecting adults consuming products with strong resemblance to popular snacks and candies that contain delta-8 THC without realizing it,” FDA Principal Deputy Commissioner Namandjé Bumpus, PhD, said in a statement. 

“As accidental ingestion and/or overconsumption of Delta-8 THC containing products could pose considerable health risks, the companies who sell these illegal products are demonstrating complete neglect for consumer safety.”

Delta-8 THC is derived from hemp, which Congress legalized in the 2018 Farm Bill. Hemp contains only trace amounts of THC, the psychoactive ingredient in cannabis, so the thinking was that hemp would only be used to make cash products such as rope, clothing and horse feed. It didn’t take long, however, for cannabis companies to develop a synthetic form of hemp-derived THC that is just as potent as regular THC. 

Efforts are underway to close that loophole in the next Farm Bill, but in the meantime delta-8 THC products remain legal under federal law, although some individual states have banned them. 

In 2022 and 2023, the feds issued similar warnings against other companies marketing Delta-8 THC edibles. Although those products were withdrawn from the market, other companies have stepped into the void and began selling similar ones. 

The FDA and FTC say the copycat branding of delta-8 edibles violates federal laws against unfair or deceptive marketing, including practices that present health or safety risks. The agencies say children are particularly vulnerable, because they might not realize the edibles contain THC. 

“Companies that market and sell edible THC products that are easily mistaken for snacks and candy are not only acting illegally, but they are also putting the health of young children at risk,” said Samuel Levine, director of the FTC’s Bureau of Consumer Protection. “Those that prioritize profits in front of children's safety are at serious risk of legal action.”

Industry groups that represent companies that have seen their branded products mimicked have come out against this type of copycat packaging.  The Consumer Brands Association (CBA) has a position paper on its website specifically addressing THC edibles that mimic popular brands. 

“Companies are unequivocally opposed to their brands being illegally used in products containing THC,” the CBA writes. “But rooting out these bad actors is like a game of whack-a-mole. By the time a company or government entity goes after them, their local storefront or online presence disappears and they pop up with a new name and new site.”

The issue goes beyond simple copyright infringement. The CBA cites recent data showing that national poison control centers handled nearly 10,500 incidents involving products laced with THC. Of those cases, 77% involved consumers 19 years old or younger.

“The urgency of this issue is not about intellectual property infringement, but about how that infringing use of trusted food brands creates a direct threat to consumer safety — particularly that of children,” the CBA says. “As incidents of children being hurt by lookalike products that endanger them increase, greater enforcement is necessary.”

The National Confectioners Association (NCA) has also warned about cannabis companies using packages that looks like popular candy and snacks.

Edibles may deliberately mimic the trade dress of beloved consumer brands,” the NCA said. “It is often very difficult to distinguish these edibles from conventional foods and beverages, resulting in confusion and injury to consumers, including children, and reputational damage to food companies.”

The NCA says it is difficult and costly for companies to try to protect their brands in this situation, because it requires “state-by-state surveillance” and “burdensome legal action.”

The FDA is also concerned about the processes used to synthesize delta-8 THC, as impurities or variations in the processing can result in products that may be harmful or have unpredictable effects. The agency has requested written responses from the companies within 15 working days stating how they will address these violations and prevent their recurrence. 

Anxiety Is Not Just an Emotion

By Mara Baer

“Anxiety” made her debut last month on the silver screen in the “Inside Out” sequel and I jumped at the chance to see it with my 12-year-old daughter.

"Inside Out 2" is an imaginative exploration of the human experience, centered around a girl named Riley, set primarily within her mind, where her emotions live in “Headquarters” and guide her through life's experiences. Both the original movie and sequel provide an insightful look at the inner workings of the mind with humor and heart. Although geared towards kids, they provide some great lessons for adults too.

As someone who experiences anxiety, I was interested to see how Disney and Pixar portrayed this character. Anxiety can be an alarming reaction to one’s environment, causing uncertainty, worry and fear.

People like myself who live with chronic pain have elevated anxiety symptoms. Because the region of the brain responsible for generating pain is also partially responsible for anxiety, these connections should not be surprising. I know when I am having anxiety, but it is often hard to understand.

Inside Out’s new character drew me to the story of Riley, a 13-year-old girl in the throes of puberty, who is learning how to manage new feelings. The first movie introduces us to the characters of Joy, Sadness, Fear, Anger and Disgust, with each character’s physicality depicting their primary emotion.

In the sequel, five new emotions show up, just as Riley’s pubescent hormones take hold. In addition to Anxiety, there are Envy, Embarrassment, Ennui, and Nostalgia:

We can all recall our teenage years, when anxiety, envy, embarrassment and ennui became frequent visitors and often defined our interactions. Nostalgia pops up on occasion, to be told by the others that it isn’t her time yet and that she should come back later. Next movie, perhaps?

Anxiety is an eye bulging, shaky, intense character aglow in shades of orange. Her wiry hair and floating eyebrows make clear that Anxiety is intense, alert, and always “on.” While Anxiety’s goal in the movie is to keep Riley safe and protected, she eventually becomes destructive, pushing Riley’s limits in a hockey game in the name of “winning” and at the cost of her true self.

As someone known as a planner (sometimes to a fault), I relate to Anxiety’s need to think ahead and prepare for every problematic scenario, sometimes at the expense of my underlying values. This is the tension with anxiety, always pushing us to the limits for a cause, even at the expense of the individual experiencing it.

Knowing this tension and the shared brain region informing both anxiety and chronic pain got me thinking. What other ways are these two connected? 

As I explained in my article in Chronic Pain Chats, when we experience pain for more than three months, neural pathways can be altered, creating pain signals that are very difficult to turn off. Anxiety can be similar, sending negative feelings and thoughts into a spiral that can feel uncontrollable.

In Inside Out 2 (spoiler alert), Anxiety continues to push Riley at hockey camp to help her achieve success and build new friendships. In doing so, she ignores old friends, begins to fight with her parents, and eventually injures a friend in a game meant to determine if she would make the high school team. She is laser-focused on winning and loses touch with who she fundamentally is.

Chronic pain can do this too, becoming the center of our journey, disrupting our life path, our relationships, and who we are. Both anxiety and pain have robbed me at times of feeling like my true self. Riley experiences the same with Anxiety.

The similarities do not end here. Both anxiety and chronic pain are associated with physical sensations, feeling overwhelmed, excessive worry or fear, negativity, sleep problems, and avoidance. Anxiety can also exacerbate pain levels and lower pain thresholds. 

When Anxiety goes into overdrive during that hockey game, Riley experiences a panic attack. The audience watches as Anxiety goes into a trance-like state, trying to protect Riley and “fix” what has gone wrong, eventually sending Riley to the penalty box in a very powerful scene.

I saw my own anxiety in Riley’s, and feelings of sadness overcame me as I watched how strong and influential my own anxiety can be. That scene in the movie stuck with me, so much that it prompted me to investigate the anxiety/pain relationship and write this article. While I understand a bit better now why anxiety must exist, it can be distracting at best and debilitating at worst. 

How I Manage Anxiety

The key to managing anxiety is how I interpret its function in my life, starting with how I define it.   

While the movie portrays Anxiety as an emotion, there is some debate in the literature about whether it is. Some experts define anxiety as a state of being with feelings at its root -- what’s been called a “visceral form of emotional resistance.”

In essence, when anxiety is happening, it is because our brain is trying to protect us from a fundamental emotion that feels scarier and more threatening than anxiety itself (i.e., fear). Chronic pain is similar, sending a signal to try protect us from physical harm, even if the threat of harm is no longer there.

Other experts see anxiety as a  secondary emotion, meant to replace a more difficult primary emotion. Dr. Lauren Gorog, a Clinical Health Psychologist in Colorado, defines anxiety as a conditioned response (think mental, emotional, behavioral response) to fear. She says anxiety is typically driven by deep beliefs of inadequacy and our human tendency to “awfulize” an unwanted outcome. That can lead to a physiological and psychological state of hyperarousal that produces a distressed emotional state, with a host of mental, physical, and behavioral symptoms that negatively impact virtually all parts of our lives.

While the debate over anxiety’s role will no doubt continue, I choose to NOT define my anxiety as a simple emotion, because it takes away my ability to do something about it. Like pain, not all anxiety is bad, and both have protective factors. But we can still choose how we respond to each. 

Irrespective of whether we call anxiety an emotion or not, it is grounded in one’s mindset and can change. In fact, the best way to counter anxiety is to “feel your feelings.” Many people with chronic pain do not do this, pushing away feelings that harbor themselves in the body, which leads to more pain for longer periods of time.

Interestingly, similar strategies can be used to address chronic pain, including somatic tracking and Pain Reprocessing Therapy, which focus on paying attention to pain without judgement or fear, which has been proven to lead to less pain. 

At the end of the Inside Out 2, Joy tells Anxiety: “You don’t get to choose who Riley is. You need to let her go.”

Anxiety doesn’t choose who I am. Neither does pain. I will make sure of it. 

Mara Baer lives with Thoracic Outlet Syndrome, a nerve entrapment condition that causes severe pain. Mara is the founder of AgoHealth, a health policy consulting firm. She also serves on the Science and Policy Advisory Council for the National Pain Advocacy Center and publishes Chronic Pain Chats, a free newsletter.

There’s Little Evidence That Massage Therapy Helps With Pain

By Crystal Lindell

It’s often touted as an alternative pain treatment, but it turns out there’s not much evidence showing that massage therapy actually helps with either chronic or acute pain. 

That’s according to new research published in JAMA Network Open that analyzed hundreds of clinical studies of massage therapy for pain. In a systematic review of those studies, the authors found little evidence that massage therapy actually helps relieve pain. In fact, most of the studies concluded that the certainty of evidence was low or very low. 

Notably, the researchers looked at studies involving many different types of pain, including cancer-related pain, chronic and acute back pain, chronic neck pain, fibromyalgia, labor pain, myofascial pain, plantar fasciitis, postpartum pain, postoperative pain, and pain experienced during palliative care. 

“There is a large literature of original randomized clinical trials and systematic reviews of randomized clinical trials of massage therapy as a treatment for pain,” wrote lead author Selene Mak, PhD, a researcher and program manager at the VA’s Greater Los Angeles Healthcare System. 

“Our systematic review found that despite this literature, there were only a few conditions for which authors of systematic reviews concluded that there was at least moderate-certainty evidence regarding health outcomes associated with massage therapy and pain. Most reviews reported low- or very low–certainty evidence.”

The results are especially concerning because massage therapy is often recommended as an nonopioid alternative for treating pain. In fact, in its revised 2022 opioid guideline, the CDC specifically mentions “massage” multiple times as a nonpharmacologic alternative. 

“Nonopioid therapies are preferred for subacute and chronic pain. Clinicians should maximize use of nonpharmacologic and nonopioid pharmacologic therapies as appropriate for the specific condition and patient,” the guideline says.

Researchers involved in the current study found that “massage therapy” was a poorly defined category of treatment, which made it more difficult to analyze. For example, in some studies, acupressure was considered massage therapy, but at other times it was classified as acupuncture. 

“Massage therapy is a broad term that is inclusive of many styles and techniques,” Mak wrote. “This highlights a fundamental issue with examining the evidence base of massage therapy for pain when there is ambiguity in defining what is considered massage therapy.”

Researchers also found that it was difficult to do placebo-controlled massage studies because it’s difficult to compare massage with a sham or placebo treatment. 

“Unlike a pharmaceutical placebo, sham massage therapy may not be truly inactive,” they wrote. “It is conceivable that even the light touch or touch with no clear criterion used in sham massage therapy may be associated with some positive outcomes.… Limitations of sham comparators raise the question of whether sham or placebo treatment is an appropriate comparison group in massage therapy trials.”

The researchers said it might be better to compare massage therapy with other treatments rather than a placebo. They also called for more high-quality research to look into exactly how helpful massage therapy is for pain. 

All of this doesn’t mean that massage therapy offers zero benefits, and patients who get something out of it should continue to use it.  However, medical professionals (and guideline authors) should be more cautious about recommending massage as a substitute for proven pain treatments, such as opioids. Because the last thing people in pain need is to be given ineffective treatments while being denied effective ones..

Can a Smartphone App Relieve Fibromyalgia Symptoms?

By Pat Anson

It was a little over a year ago that the FDA authorized the marketing of the first smartphone app designed specifically to treat fibromyalgia. The Stanza app uses a form of cognitive behavioral therapy (CBT) to help patients improve their quality of life by lessening the pain, anxiety, fatigue and depression that often come with fibromyalgia.

New findings from a placebo-controlled Phase 3 study, recently published in the The Lancet, helped demonstrate Stanza’s potential benefits.  

“This novel, non-drug therapy, available using a smartphone, makes management of fibromyalgia more accessible and convenient. This offers new hope for people with fibromyalgia, who have continued to experience unmet treatment needs,” says lead investigator Lesley Arnold, MD, an Associate Professor of Psychiatry at the University of Cincinnati College of Medicine.

Arnold and her colleagues enrolled 275 fibromyalgia patients in a 12-week trial, with half randomly assigned to receive Stanza treatment and the other half serving as a control group. Participants were allowed to continue taking medications and any other therapies they were using before the study.

Fibromyalgia is a difficult condition to diagnose and treat, because it comes with a wide array of symptoms such as widespread body pain, headaches, fatigue, insomnia, brain fog 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.

Stanza uses a form of CBT called Acceptance and Commitment Therapy (ACT) to teach patients psychological skills to help lessen the impact of fibromyalgia on their lives. A daily 15–20-minute session includes ACT lessons on deep breathing, mindfulness and other self-management skills.   

The effectiveness of Stanza was measured by the patients themselves, through a self-assessment test known as Patient Global Impression in Change (PGIC), in which participants described changes in their overall well-being.  

After 12 weeks, over 70% of participants in the Stanza group had improvements in their PGIC score, compared to 22% in the control group. Stanza participants also had more significant improvement in their pain intensity, physical function, fatigue, sleep and depression. No adverse events were observed either group.

It’s important to note the research was funded by Swing Therapeutics, the maker of Stanza, which calls it largest study ever conducted of a medical device for fibromyalgia.

“Fibromyalgia options are typically limited to a handful of pharmacological interventions that have limited efficacy and that can come with difficult-to-manage side effects,” says Mike Rosenbluth, CEO of Swing. “This publication validates Stanza as a guideline-directed non-drug approach that many patients previously couldn’t access due to few available trained clinicians, geographic limitations and cost.

Stanza is intended for use five to seven days per week, for a standard treatment period of 12 weeks. After that, Stanza can be used as needed. Previous studies have found that improvements in fibromyalgia symptoms can last up to 12 months after Stanza therapy.

Although it’s a self-guided app, Stanza requires a prescription and the supervision of a medical professional trained in its use.  Currently, Stanza clinicians are only available in the states of Illinois, Michigan, Missouri, Nevada, Ohio, Pennsylvania, Tennessee and Texas.  Medicare Part B and some private insurers cover Stanza treatment.  

Premenstrual Disorder Causes Despair for Some Women

By Lauren Peace, KFF Health News

For the most part, Cori Lint was happy.

She worked days as a software engineer and nights as a part-time cellist, filling her free hours with inline skating and gardening and long talks with friends. But a few days a month, Lint’s mood would tank. Panic attacks came on suddenly. Suicidal thoughts did, too.

She had been diagnosed with anxiety and depression, but Lint, 34, who splits her time between St. Petersburg, Florida, and Tulsa, Oklahoma, struggled to understand her experience, a rift so extreme she felt like two different people.

“When I felt better, it was like I was looking back at the experience of someone else, and that was incredibly confusing,” Lint said.

Then, in 2022, clarity pierced through. Her symptoms, she realized, were cyclical. Lint recognized a pattern in something her doctors hadn’t considered: her period.

CORI LINT

For decades, a lack of investment in women’s health has created gaps in medicine. The problem is so prevalent that, this year, President Joe Biden signed an executive order to advance women’s health research and innovation.

Women are less likely than men to get early diagnoses for conditions from heart disease to cancer, studies have found, and they are more likely to have their medical concerns dismissed or misdiagnosed. Because disorders specifically affecting women have long been understudied, much remains unknown about causes and treatments.

That’s especially true when it comes to the effects of menstruation on mental health.

When Lint turned to the internet for answers, she learned about a debilitating condition at the intersection of mental and reproductive health.

Sounds like me, she thought.

What Is PMDD?

Premenstrual dysphoric disorder, or PMDD, is a negative reaction in the brain to natural hormonal changes in the week or two before a menstrual period. Symptoms are severe and can include irritability, anxiety, depression, and sudden mood swings. Others include fatigue, joint and muscle pain, and changes to appetite and sleep patterns, with symptoms improving once bleeding begins.

Unlike the mild discomfort of premenstrual syndrome, or PMS, the effects of premenstrual dysphoric disorder are life-altering. Those afflicted, according to one estimate, can endure almost four years of disability, cumulatively, over their lives.

Though researchers estimate that the dysphoric disorder affects around 5% of people who menstruate — about the same percentage of women with diabetes — the condition remains relatively unknown, even among health care providers.

In a 2022 survey of PMDD patients published in the Journal of Women’s Health, more than a third of participants said their family doctors had little knowledge of the premenstrual disorder or how to treat it. About 40% said the same was true of their mental health therapists.

Reproductive mental health has been sidelined as a specialty, said Jaclyn Ross, a clinical psychologist who researches premenstrual disorders as associate director of the CLEAR Lab at the University of Illinois-Chicago. Only some health care providers get training or even become aware of such disorders, Ross said.

“If you’re not considering the menstrual cycle, you’re at risk of misdiagnosing and missing what’s actually going on,” Ross said.

That was the case for Tampa, Florida, resident Jenna Tingum, 25, who had panic attacks and suicidal thoughts as a premed student at the University of Florida. It wasn’t until her college girlfriend read about PMDD online and noticed Tingum’s symptoms flared in the days leading up to her period that Tingum talked with her gynecologist.

“I don’t think I would have ever put the pieces together,” Tingum said.

Suicide Risk and Treatment

Because few researchers study the condition, the cause of PMDD is something of an enigma, and treatments remain limited.

It wasn’t until 2013 that the disorder was added to the Diagnostic and Statistical Manual, the handbook used by medical professionals in the U.S. to diagnose psychiatric conditions. PMDD was officially recognized by the World Health Organization in 2019, though references in medical literature date to the 1960s.

Defining the disorder as a medical condition faced early pushback from some feminist groups wary of giving credibility to stereotypes about PMS and periods. But Ross said patients must be taken seriously.

In one study, 72% of respondents with the disorder said they’d had suicidal thoughts in their lifetime. And 34% said they had attempted suicide, compared with 3% of the general population.

Marybeth Bohn lost her daughter, Christina Bohn, to suicide in 2021. It was only in the months before her death at age 33 that Christina connected her extreme distress to her cycle — no doctors had asked, Bohn said. Now Bohn, who lives in Columbia, Missouri, works with medical and nursing schools around the country to change curricula and encourage doctors to ask people in mental health emergencies about their premenstrual symptoms and cycles.

“We need more research to understand how and why these reactions to hormones occur,” Ross said. “There’s so much work to be done.”

While doctors haven’t settled on a universal approach to address the symptoms, three main treatments have emerged, said Rachel Carpenter, medical director of reproductive psychiatry at the University of Florida–Jacksonville College of Medicine.

Selective serotonin reuptake inhibitors, the most common form of antidepressants, are a first line of attack, Carpenter said. Some patients take the medication regularly; others in just the week or two that symptoms occur.

For some patients, hormonal birth control can alleviate symptoms by controlling or preventing the release of certain hormones.

Finally, talk therapy and cycle awareness can help patients build mental resilience for difficult weeks.

Sandi MacDonald, who co-founded the International Association for Premenstrual Disorders, a leading resource for patients and clinicians, said peer support is available through the nonprofit, but funding for research and education remains elusive.

She hopes the new White House initiative on advancing women’s health research will open doors.

‘I’m Not Crazy’

Both Lint and Tingum, who were diagnosed by medical professionals after learning about the disorder on their own, said a lack of conversation around periods contributed to their care being delayed.

Lint doesn’t remember talking much about periods in grade school; they were often the butt of a joke, used to dismiss women.

“For the longest time, I thought, ‘Well, this happens to everyone, right?’” Lint said of her symptoms. “Has a doctor ever asked me what my symptoms are like? No, absolutely not. But we’re talking about a quarter or more of my life.”

Brett Buchert, a former University of Florida athlete who took time away from campus because her symptoms were so severe, said that when doctors do ask questions, it can feel like boxes being checked: “The conversation ends there.”

Buchert, who graduated with a degree in psychology and now lives in Boulder, Colorado, said understanding what’s happening to her and being aware of her cycle has helped her manage her condition.

Lint and Tingum agreed.

Even as Lint struggles to find a medicine that brings relief, tracking her cycle has allowed her to plan around her symptoms, she said. She makes fewer commitments in the week before her period. She carves out more time for self-care.

She’s also found solace in reading stories of others living with the condition, she said.

“It’s helped me process the extremes,” Lint said. “There’s not something wrong with me as an individual. I’m not crazy; this is something that’s legitimately happening to me. It helps to know I’m not alone.”

This article was produced through a partnership between KFF Health News and the Tampa Bay Times. KFF Health News is a national newsroom that produces in-depth journalism about health issues.

Researchers Closer to Finding the Gene for Hypermobile EDS

By Crystal Lindell

We may be one step closer to discovering the specific gene mutations behind hypermobile Ehlers-Danlos syndrome (hEDS) — a connective tissue disorder that weakens collagen, muscles, ligaments and organs throughout the body, and makes joints highly flexible.

A research team at the Medical University of South Carolina has released the results of a genetic study of a family with high rates of hEDS. Five out of 11 family members met the clinical diagnostic criteria for hEDS and three were considered “probable.” 

Before we get too far into its conclusions though, it’s important to note that findings were released as a preprint in Research Square, which means they have not yet been peer-reviewed by a journal. As such, it’s in the early stages of release, and further scrutiny may result in changes to the conclusions.

That said, the researchers claim to have found what could be a variant linked to hEDS in the Kallikrein-15 gene, which is primarily expressed in the thyroid gland and other organs.

To check if this gene change actually causes hEDS, researchers used laboratory mice. After modifying the mice to have the same genetic variant, they found that the mice had similar connective tissue problems as seen in people with hEDS.

This supports the idea that the Kallikrein gene changes may play a role in causing hEDS.

But the research does not seem to show an all-encompassing hEDS gene. In a cohort of 197 hEDS patients, they found that less than a third (32.8%) had at least one KLK variant. Which means that over 60% of hEDS patients in the study did not have the variant.

As of now, hEDS is the only type of Ehlers-Danlos syndrome that does not have a known specific genetic marker, so finding one would be monumental. And even if this research doesn’t get us all the way there, it’s a huge step in the right direction.

Previous research has also associated hEDS to a genetic variant that causes a deficiency of folate, the natural form of Vitamin B9.

I should note here that I was diagnosed with hypermobile-EDS in 2018, so I have a lot of interest in the topic on a personal level. Since there is no genetic test currently available for hEDS, I was diagnosed via a physical assessment, along with my family’s medical history.

A lot of hEDS patients worry that if there ever is some sort of confirmed, definitive test like a genetic marker, they may not have the marker and would then “lose” their diagnosis.

Based on my personal experiences with medical professionals, I think that’s a legitimate fear. Doctors already seem unwilling to diagnose clear cases of hEDS for a variety of reasons, and this could just give them another excuse to continue doing that.

All I can really say is that if it happened to me, I would feel confident in knowing that my body is clearly not “normal” — so even if it’s not hEDS, there is something else impacting my health.

Some patients diagnosed with hEDS may actually be suffering from something else -- so a genetic test might help them to get the right diagnosis and treatment. I know that probably sounds naively optimistic to many patients. The more likely result is doctors telling patients nothing is wrong with them, and then sending them on their way to suffer.  

On the other hand, I think hEDS is so under-diagnosed, that having a definitive test for it would result in many, many more people finally getting an hEDS diagnosis.

Discovering the exact gene responsible for hEDS could also result in better treatments going forward. As of now, most doctors tell hEDS patients that there’s no cure, so all they can really do is treat the symptoms as they arise and avoid activities that could make their condition worse.  

This is purely wishful thinking, but perhaps in the future researchers will someday discover a way to actually strengthen our collagen and connective tissue, which could have countless benefits for patients suffering from the pain and other common hEDS symptoms.

Advancements like that still feel a long way off though, so until they happen, helping people get an hEDS diagnosis through a genetic test would be progress for millions of patients.

Rite Aid Settles Opioid Dispensing Case

By Pat Anson

Embattled pharmacy chain Rite Aid has agreed to a settlement with the federal government over the illegal dispensing of opioid pain medication, removing one of the last legal hurdles in the company’s bankruptcy case. Details of the settlement, which includes an explicit offer to cooperate with DEA investigations, were made public this week.

Rite Aid agreed last month to a bankruptcy restructuring plan that eliminates $2 billion in debt, while giving the company access to another $2.5 billion in loans to finance a turnaround plan. The pharmacy chain has already closed over 520 stores, about a quarter of the 2,100 pharmacies it operated prior to filing for Chapter 11 bankruptcy.

Rite Aid allegedly violated the Controlled Substances and False Claims Acts by dispensing hundreds of thousands of prescriptions for opioids and other controlled substances that lacked a “legitimate medical purpose.” The government said the prescriptions were filled by Rite Aid pharmacists from 2014 to 2019, despite “red flags” that they were suspicious or illegal.

“Pharmacies and pharmacists have an affirmative legal duty to ensure that the prescriptions they fill are legitimate,” Rebecca Lutzko, U.S. Attorney for the Northern District of Ohio, said in a statement. “When they disregard this responsibility and instead ignore red flags indicating that prescriptions for addictive painkillers are invalid, they violate the public’s trust and harm the community they are supposed to serve — all to make a buck.”

The Justice Department may have squeezed all it can get out of Rite Aid. Under the settlement, the company agreed to pay the government $7.5 million, along with an “allowed, unsubordinated, general unsecured claim” of nearly $402 million in the bankruptcy case.

An unsecured claim means the government is not entitled to any liens on liquidated Rite Aid property and has to stand in line behind other secured creditors. The $7.5 million payment may be the only one the government receives.

Rite Aid and other pharmacy chains have faced “extreme pressure” from regulators and law enforcement to rein in their opioid prescribing. According to congressional investigators, Rite Aid, CVS and Kroger allow their pharmacy staff to routinely hand over prescription records to law enforcement without a warrant. In most cases, patients are never informed that their medical records were provided to law enforcement or why they were being sought.   

That cooperative relationship with law enforcement is being codified under Rite Aid’s settlement with the government. The company and the DEA have signed a memorandum of agreement “to increase communication between the company, its retailers and DEA.” The agreement requires Rite Aid to keep records relevant to DEA investigations for a minimum of five years and to give employees additional training to help them identify suspicious prescriptions.

Law enforcement agencies are not covered by the Health Insurance Portability and Accountability Act (HIPAA), which protects patient privacy.

Rite Aid also agreed to a corporate integrity agreement, which requires the company to submit data on prescriptions for controlled substances to an Independent Review Organization to determine whether the drugs are properly prescribed, dispensed and billed.

‘They Give Me the Runaround’

It’s already quite common for a pharmacist to refuse to fill an opioid prescription, regardless of a patient’s condition or need.

In 2019, a California woman with late-stage breast cancer posted a tearful video online, after a Rite Aid pharmacist said he would not refill her prescription for Norco, an opioid medication she took for cancer pain. Doyle said the pharmacist told her he was worried about being fined or losing his job if he filled her prescription, even though cancer pain is exempt from opioid prescribing guidelines. 

“I have to take 20 pills a day just to stay alive,” Doyle said. “Every time I take my pain pill prescription there, they give me the runaround.”

Rite Aid eventually apologized to Doyle and offered to fill her prescriptions, but she refused to go back to the Rite Aid pharmacy where she shopped for 20 years.  She died of cancer in 2020, leaving behind a 9-year-old son.

April Doyle’s case is not unique. A recent PNN survey of nearly 3,000 pain patients found that over 90% with an opioid prescription experienced delays or problems getting their medication. Nearly 20% couldn’t to get their prescription filled, in part because opioids such as hydrocodone and oxycodone are in short supply.

Although most U.S. drug overdoses involve illicit fentanyl and other street drugs, federal prosecutors and law enforcement continue to blame doctors, pharmacies, drug wholesalers and opioid manufacturers for the nation’s overdose crisis.  

“America continues to live through the worst opioid epidemic we have ever seen. Rite Aid contributed to this crisis by ignoring obvious red flags and dispensing hundreds of thousands of unnecessary opioids,” said DEA Administrator Anne Milgram. “DEA will continue to do everything in our power to protect the health and safety of Americans and to end the opioid epidemic.”

Older Americans Worried About Rising Cost of Healthcare

By Judith Graham, KFF Health News

What weighs most heavily on older adults’ minds when it comes to health care?

The cost of services and therapies, and their ability to pay.

“It’s on our minds a whole lot because of our age and because everything keeps getting more expensive,” said Connie Colyer, 68, of Pleasureville, Kentucky. She’s a retired forklift operator who has lung disease and high blood pressure. Her husband, James, 70, drives a dump truck and has a potentially dangerous irregular heart rhythm.

Tens of millions of seniors are similarly anxious about being able to afford health care because of its expense and rising costs for housing, food, and other essentials.

A new wave of research highlights the reach of these anxieties. When the University of Michigan’s National Poll on Healthy Aging asked people 50 and older about 26 health-related issues, their top three areas of concern had to do with costs: of medical care in general, of long-term care, and of prescription drugs. More than half of 3,300 people surveyed in February and March reported being “very concerned” about these issues.

In fact, five of the top 10 issues identified as very concerning were cost-related. Beyond the top three, people cited the cost of health insurance and Medicare (52%), and the cost of dental care (45%). Financial scams and fraud came in fourth place (53% very concerned). Of much less concern were issues that receive considerable attention, including social isolation, obesity, and age discrimination.

In an election year, “our poll sends a very clear message that older adults are worried about the cost of health care and will be looking to candidates to discuss what they have done or plan to do to contain those costs,” said John Ayanian, director of the University of Michigan’s Institute for Healthcare Policy and Innovation.

Older adults have good reason to worry. One in 10 seniors (about 6 million people) have incomes below the federal poverty level. About 1 in 4 rely exclusively on Social Security payments, which average $1,913 a month per person.

Even though inflation has moderated since its 2022 peak, prices haven’t come down, putting a strain on seniors living on fixed incomes.

Meanwhile, traditional Medicare doesn’t cover several services that millions of older adults need, such as dental care, vision care, or help at home from aides. While private Medicare Advantage plans offer some coverage for these services, benefits are frequently limited.

‘Difficult to Afford Basic Necessities’

All of this contributes to a health care affordability squeeze for older adults. Recently published research from the Commonwealth Fund’s 2023 Health Care Affordability Survey found that nearly a third of people 65 or older reported difficulty paying for health care expenses, including premiums for Medicare, medications, and expenses associated with receiving medical services.

One in 7 older adults reported spending a quarter or more of their average monthly budget on health care; 44% spent between 10% and 24%. Seventeen percent said they or a family member had forgone needed care in the past year for financial reasons.

The Colyers in Pleasureville are among them. Both need new dentures and eyeglasses, but they can’t afford to pay thousands of dollars out-of-pocket, Connie said.

“As the cost of living rises for basic necessities, it’s more difficult for lower-income and middle-income Medicare beneficiaries to afford the health care they need,” said Gretchen Jacobson, vice president of the Medicare program at the Commonwealth Fund. Similarly, “when health care costs rise, it’s more difficult to afford basic necessities.”

This is especially worrisome because older adults are more prone to illness and disability than younger adults, resulting in a greater need for care and higher expenses. In 2022, seniors on Medicare spent $7,000 on medical services, compared with $4,900 for people without Medicare.

Not included in this figure is the cost of assisted living or long-term stays in nursing homes, which Medicare also doesn’t cover. According to Genworth’s latest survey, the median annual cost of a semiprivate room in a nursing home was $104,000 in 2023, while assisted living came to $64,200, and a year’s worth of services from home-health aides cost $75,500.

Many older adults simply can’t afford to pay for these long-term care options or other major medical expenses out-of-pocket.

“Seventeen million older adults have incomes below 200% of the federal poverty level,” said Tricia Neuman, executive director of the Program on Medicare Policy for KFF. (That’s $30,120 for a single-person household in 2024; $40,880 for a two-person household.) “For people living on that income, the risk of a major expense is very scary.”

How to deal with unanticipated expenses in the future is a question that haunts Connie Colyer. Her monthly premiums for Medicare Parts B and D, and a Medigap supplemental policy come to nearly $468, or 42% of her $1,121 monthly income from Social Security.

With a home mortgage of $523 a month, and more than $150 in monthly copayments for her inhalers and her husband’s heart medications, “we wouldn’t make it if my husband wasn’t still working,” she told me.

James’ monthly Social Security payment is $1,378. His premiums are similar to Connie’s and his income fluctuates based on the weather. In the first five months of this year, it approached $10,000, Connie told me.

Many Seniors Reluctant to Ask for Help

The couple makes too much to qualify for programs that help older adults afford Medicare out-of-pocket costs. As many as 6 million people are eligible but not enrolled in these Medicare Savings Programs. Those with very low incomes may also qualify for dual coverage by Medicaid and Medicare or other types of assistance with household costs, such as food stamps.

Older adults can check their eligibility for these and other programs by contacting their local Area Agency on Agency, State Health Insurance Assistance Program, or benefits enrollment center. Enter your ZIP code at the Eldercare Locator and these and other organizations helping seniors locally will come up.

Persuading older adults to step forward and ask for help often isn’t easy. Angela Zeek, health and government benefits manager at Legal Aid of the Bluegrass in Kentucky, said many seniors in her area don’t want to be considered poor or unable to pay their bills, a blow to their pride.

“What we try to say is, ‘You’ve worked hard all your life, you’ve paid your taxes. You’ve given back to this government, so there’s nothing wrong with the government helping you out a bit,’” said Zeek.

And the unfortunate truth is there’s very little, if any, help available for seniors who aren’t poor but have modest financial resources. While the need for new dental, vision, and long-term care benefits for older adults is widely acknowledged, “the question is always how to pay for it,” said Neuman of KFF.

This will become an even bigger issue in the coming years because of the burgeoning aging population.

There is some relief on the horizon, however: Assistance with Medicare drug costs is available through the 2022 Inflation Reduction Act, although many older adults don’t realize it yet. The act allows Medicare to negotiate the price of prescription drugs for the first time. This year, out-of-pocket costs for medications will be limited to a maximum $3,800 for most beneficiaries. Next year, a $2,000 cap on out-of-pocket drug costs will take effect.

“We’re already seeing people who’ve had very high drug costs in the past save thousands of dollars this year,” said Frederic Riccardi, president of the Medicare Rights Center. “And next year, it’s going to get even better.”

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

Can Complex Regional Pain Syndrome Be Cured?

By Pat Anson

A recent study by Australian researchers is challenging the notion that Complex Regional Pain Syndrome (CRPS) cannot be cured.

CRPS is a nerve disorder that often starts with an injury to an arm or leg, with the skin in the affected area becoming warm, red and painful to touch. Most cases are mild and people soon recover, but in rare cases it gets worse, resulting in chronic nerve pain that spreads throughout the body.  Because CRPS is difficult to predict, diagnose and treat, there’s been a long-held belief that it’s a lifelong illness.

“In this research we challenge the prevailing notion that CRPS is a lifelong burden,” says Michael Ferraro, a clinical researcher at the Centre for Pain IMPACT at Neuroscience Research Australia. “By reviewing and consolidating the latest developments in understanding CRPS, we’ve found that unlike previous theories, recovery is likely for most people with CRPS, and may be more likely with early diagnosis and a comprehensive treatment approach to match the multi-system nature of the disorder.”

Ferraro is lead author of a review in The Lancet Neurology, which maintains that 80% of CRPS patients can recover, if they are treated within the first 18 months of being diagnosed. The key is to “tackle CRPS from all angles” by combining pain medication, rehabilitation, and psychology with patient education about the condition.

Although the authors admit that “effective treatment of CRPS remains a challenge,” they think providers have learned a lot over the past five years about early identification of patients at high risk of CRPS, which is also known as Reflex Sympathetic Dystrophy (RSD).

“This is a major step towards better understanding CPRS. While more research is needed, our review highlights that biological and psychosocial factors are involved, and successful management of the disorder should target these factors,” says co-author Lorimer Moseley, PhD, a Professor of Clinical Neurosciences at University of South Australia. “The next steps will require national and international networks of researchers to test the most promising treatments in clinical trials.”

One study that’s already underway is the MEMOIR trial, funded by the Australian government, which is testing an analgesic drug and a newly developed rehabilitation program as potential treatments for CRPS.

Another recent study identified a genetic variant that may be involved in about a third of CRPS cases, which could potentially lead to earlier diagnoses.

Some CRPS patients are also finding relief through novel treatments, such as Scrambler therapy and ketamine infusions.

Many Doctors Hesitant to Accept Patients Using Opioids or Cannabis

By Crystal Lindell

Chronic pain patients who use either opioids or cannabis are still finding it hard to find new primary care physicians, according to new research at the University of Michigan.

Lead author Mark Bicket, MD, and his colleagues surveyed more than 1,000 U.S. primary care physicians about whether they were accepting new patients with chronic non-cancer pain. The physicians were all based in states with medical cannabis programs.

Of the 852 physicians who said they were taking new patients, 20% said they would not accept patients taking prescription opioids. Nearly a third (32%) said they would not accept a patient using opioids daily.

In contrast, only 18% of doctors said they would not take a pain patient using medical cannabis. And 40% said they would not accept a patient using cannabis “obtained from other sources” — meaning the cannabis probably came from the black market.

Primary Care Doctors Willing to Take New Patients Using Opioids or Cannabis

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“There’s a group of legacy patients with chronic pain who have been on long-term opioids for some time, and they may have to find a doctor, maybe because they’ve moved or their doctor has retired,” said Bicket, who is an anesthesiologist and pain researcher at Michigan Medicine. “For those patients in particular, finding someone else to help with their care is challenging.”

Making matters worse, pain patients are at higher risk of having a substance problem if they don’t have access to pain medication.

“This lack of access could inadvertently encourage patients to seek nonmedical treatments for their chronic pain, given that relief of pain is the most commonly reported reason for misuse of controlled substances,” Bicket wrote. “I empathize a lot with the patients, as well as the prescribers out there, trying to treat people in pain because we’re trying to do the right thing, and yet, we’re flying in the dark when it comes to having access to high quality evidence to guide next steps for cannabis and opioids.”

While the study didn't assess the reasons for physician reluctance, it adds to a growing body of evidence that patients using cannabis or opioids have less access to care. 

In a 2019 PNN survey of nearly 6,000 chronic pain patients, almost three out of four (72%) said it was hard to find a doctor willing to treat their pain. More than a third of patients (34%) said they’ve been abandoned by a doctor and 15 percent said they haven’t been able to find a doctor at all.

That same year, another survey by researchers at the University of Michigan found that only 40% of primary care practices would take a new patient on opioids. That survey used a "secret shopper" method, with researchers posing as the adult children of patients taking the opioid Percocet calling primary care clinics in Michigan to see if they could schedule an appointment for their parent.

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