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

HEALTH AFFAIRS SCHOLAR

“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.

Drug Prohibition Is Making the Overdose Crisis Worse

By Drs. Kora DeBeck and Perry Kendall

Should heroin and cocaine be legally available to people who need and want them? If we are serious about stopping the crisis of drug overdose deaths, that is exactly the kind of profound change we need. Yes, extensive regulations would be necessary. In fact, the whole point of regulating drug production and sales is that we can better control what is being sold and to whom.

After British Columbia’s Provincial Health Officer Dr. Bonnie Henry testified to the all-party health committee in Ottawa in May that regulating these controlled drugs would minimize harms, B.C. Premier David Eby said he disagreed. He is quoted saying “in a reality-based, real-world level, (it) doesn’t make any sense.” But does our current approach of drug prohibition “make sense?”

Since the overdose crisis was declared in 2016, illicit drug toxicity deaths have become the leading cause of unnatural death in B.C. and the leading cause of death from all causes for those aged 10 to 59. More than 44,000 people have died from drug poisoning in Canada since 2016, and more than one-third of those were in B.C. An average of 22 people are dying every day in Canada because the illicit supply of drugs is toxic.

Toxic Drug Supply

Why is the drug supply so toxic? Because we are letting organized crime manufacture drugs instead of regulated licensed industries that are required to follow health and safety standards.

In the context of drug prohibition, organized crime and drug cartels are incentivized to make highly potent products because it is cheaper and hence more profitable. This is what happened during alcohol prohibition in the 1920s. Organized crime ran rampant, and people were poisoned because there were no health and safety standards for production.

The failure of alcohol prohibition in meeting its key objectives of eliminating the supply and demand of alcohol are the same failures of drug prohibition. Illegal drugs are easy to find regardless of their illegal status. Reliable estimates are that 225,000 people are using illegal substances in B.C.

What is the way out? Our knowledge of research evidence and decades of collective experience — including as a researcher (Kora DeBeck), a B.C. provincial health officer (Perry Kendall) and chief coroner (Lisa Lapointe) during the overdose crisis — brings us to drug regulation. When we regulate a substance, we have the most control over its production, distribution and consumption.

Lessons From Tobacco

Some may argue that regulating drugs sends the “wrong message” and will encourage drug use, most concerningly among young people. However, if we look to lessons from tobacco regulation, we can see that public health-based regulations can actually be strong and effective substance-use deterrents.

By strictly controlling tobacco marketing, packaging, purchase price, purchase age and consumption locations alongside educating people about the health risks, tobacco consumption and associated health harms have been significantly reduced without all the additional risks of banning tobacco products (for example, criminal black markets controlling production and sales).

The same kinds of regulatory tools would be available to control the use of currently illegal drugs if we moved from prohibition to regulation.

Addiction Treatment Not Enough

But what about addiction treatment? Isn’t that what we really need? While it’s true that eliminating wait times and increasing access to effective, evidence-based treatment are critically important and much needed, the reality is that many people who use drugs don’t have an addiction and many others are not currently seeking treatment. Yet all people who use drugs face the deadly consequences of an unregulated toxic drug supply.

It is also important to remember that addiction recovery is complex and relapse is common in the recovery journey. In today’s toxic drug environment, people who relapse after a period of abstinence face a significantly higher risk of death due to their reduced tolerance. We also know that substance treatment is not regulated or standardized, and treatment outcomes are not reported.

While supporting people to recovery is important and can be lifesaving, addiction treatment is not the straightforward solution many believe it should be. Thousands of lives remain at risk every day.

A Regulated Drug Supply

Taking the production and sale of currently illegal drugs away from organized crime and drug cartels is the most promising way to keep our kids and communities safe. With strict health and safety standards for the production of these drugs and stringent public health-based regulations on their distribution and sale, we have the best shot at reversing the carnage of overdose fatalities and managing drug-related harms.

Regulating drugs may seem to some like a radical proposition but governments regulate the production and distribution of potentially dangerous goods all the time. The regulation of firearms in Canada includes licensing that requires passing a firearms safety course. Mandatory ingredient lists that disclose the amount of sugar, sodium and fat in the foods we eat is another example of a government regulation that is designed to protect the public and provide information that may shape consumption patterns and reduce health risks.

Implementing an effective regulatory framework for currently illegal drugs will be a complex undertaking requiring close monitoring and evaluation and inevitably corrections and revisions along the way. While the task may appear daunting, allowing overdose deaths to continue at the current rate is unconscionable.

Transformational and life-saving drug regulation is urgently required because, borrowing terminology from Premier Eby, at the “reality-based, real-world level,” our current approach is a catastrophic failure.

Kora DeBeck, PhD, is a Distinguished Associate Professor in the School of Public Policy at Simon Fraser University and a Research Scientist at the BC Centre on Substance Use.

Perry Kendall is a Clinical Professor in the Faculty of Medicine, School of Population and Public Health at the University of British Columbia. He is also a former Provincial Health Officer for BC

This article was also co-authored by Lisa Lapointe, who was BC’s Chief Coroner from 2011 to 2024.

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

Pain Shouldn’t Be Rated on a Scale of Zero to 10

By Dr. Elisabeth Rosenthal, KFF Health News

Over the past two years, a simple but baffling request has preceded most of my encounters with medical professionals: “Rate your pain on a scale of zero to 10.”

I trained as a physician and have asked patients the very same question thousands of times, so I think hard about how to quantify the sum of the sore hips, the prickly thighs, and the numbing, itchy pain near my left shoulder blade. I pause and then, mostly arbitrarily, choose a number. “Three or four?” I venture, knowing the real answer is long, complicated, and not measurable in this one-dimensional way.

Pain is a squirrely thing. It’s sometimes burning, sometimes drilling, sometimes a deep-in-the-muscles clenching ache. Mine can depend on my mood or how much attention I afford it and can recede nearly entirely if I’m engrossed in a film or a task.

Pain can also be disabling enough to cancel vacations, or so overwhelming that it leads people to opioid addiction. Even 10+ pain can be bearable when it’s endured for good reason, like giving birth to a child. But what’s the purpose of the pains I have now, the lingering effects of a head injury?

The concept of reducing these shades of pain to a single number dates to the 1970s. But the zero-to-10 scale is ubiquitous today because of what was called a “pain revolution” in the ’90s, when intense new attention to addressing pain — primarily with opioids — was framed as progress.

Doctors today have a fuller understanding of treating pain, as well as the terrible consequences of prescribing opioids so readily. What they are learning only now is how to better measure pain and treat its many forms.

About 30 years ago, physicians who championed the use of opioids gave robust new life to what had been a niche specialty: pain management. They started pushing the idea that pain should be measured at every appointment as a “fifth vital sign.” The American Pain Society went as far as copyrighting the phrase.

But unlike the other vital signs — blood pressure, temperature, heart rate, and breathing rate — pain had no objective scale. How to measure the unmeasurable? The society encouraged doctors and nurses to use the zero-to-10 rating system. Around that time, the FDA approved OxyContin, a slow-release opioid painkiller made by Purdue Pharma. The drugmaker itself encouraged doctors to routinely record and treat pain, and aggressively marketed opioids as an obvious solution.

To be fair, in an era when pain was too often ignored or undertreated, the zero-to-10 rating system could be regarded as an advance. Morphine pumps were not available for those cancer patients I saw in the ’80s, even those in agonizing pain from cancer in their bones; doctors regarded pain as an inevitable part of disease.

In the emergency room where I practiced in the early ’90s, prescribing even a few opioid pills was a hassle: It required asking the head nurse to unlock a special prescription pad and making a copy for the state agency that tracked prescribing patterns. Regulators (rightly) worried that handing out narcotics would lead to addiction. As a result, some patients in need of relief likely went without.

After pain doctors and opioid manufacturers campaigned for broader use of opioids — claiming that newer forms were not addictive, or much less so than previous incarnations — prescribing the drugs became far easier and were promoted for all kinds of pain, whether from knee arthritis or back problems.

Assessing Pain as Vital Sign

As a young doctor joining the “pain revolution,” I probably asked patients thousands of times to rate their pain on a scale of zero to 10 and wrote many scripts each week for pain medication, as monitoring “the fifth vital sign” quickly became routine in the medical system. In time, a zero-to-10 pain measurement became a necessary box to fill in electronic medical records.

The Joint Commission on the Accreditation of Healthcare Organizations made regularly assessing pain a prerequisite for medical centers receiving federal health care dollars. Medical groups added treatment of pain to their list of patient rights, and satisfaction with pain treatment became a component of post-visit patient surveys. (A poor showing could mean lower reimbursement from some insurers.)

But this approach to pain management had clear drawbacks. Studies accumulated showing that measuring patients’ pain didn’t result in better pain control. Doctors showed little interest in or didn’t know how to respond to the recorded answer. And patients’ satisfaction with their doctors’ discussion of pain didn’t necessarily mean they got adequate treatment.

At the same time, the drugs were fueling the growing opioid epidemic. Research showed that an estimated 3% to 19% of people who received a prescription for pain medication from a doctor developed an addiction. Doctors who wanted to treat pain had few other options, though.

“We had a good sense that these drugs weren’t the only way to manage pain,” Linda Porter, director of the National Institutes of Health’s Office of Pain Policy and Planning, told me. “But we didn’t have a good understanding of the complexity or alternatives.”

The enthusiasm for narcotics left many varietals of pain underexplored and undertreated for years. Only in 2018, a year when nearly 50,000 Americans died of an overdose, did Congress start funding a program — the Early Phase Pain Investigation Clinical Network, or EPPIC-Net — designed to explore types of pain and find better solutions. The network connects specialists at 12 academic specialized clinical centers and is meant to jump-start new research in the field and find bespoke solutions for different kinds of pain.

A zero-to-10 scale may make sense in certain situations, such as when a nurse uses it to adjust a medication dose for a patient hospitalized after surgery or an accident. And researchers and pain specialists have tried to create better rating tools — dozens, in fact, none of which was adequate to capture pain’s complexity, a European panel of experts concluded.

The Veterans Health Administration, for instance, created one that had supplemental questions and visual prompts: A rating of 5 correlated with a frown and a pain level that “interrupts some activities.” The survey took much longer to administer and produced results that were no better than the zero-to-10 system.

By the 2010s, many medical organizations, including the American Medical Association and the American Academy of Family Physicians, were rejecting not just the zero-to-10 scale but the entire notion that pain could be meaningfully self-reported numerically by a patient.

In the years that opioids had dominated pain remedies, a few drugs — such as gabapentin and pregabalin for neuropathy, and lidocaine patches and creams for musculoskeletal aches — had become available.

“There was a growing awareness of the incredible complexity of pain — that you would have to find the right drugs for the right patients,” Rebecca Hommer, EPPIC-Net’s interim director, told me.

Researchers are now looking for biomarkers associated with different kinds of pain so that drug studies can use more objective measures to assess the medications’ effect. A better understanding of the neural pathways and neurotransmitters that create different types of pain could also help researchers design drugs to interrupt and tame them.

Any treatments that come out of this research are unlikely to be blockbusters like opioids; by design, they will be useful to fewer people. That also makes them less appealing prospects to drug companies.

So EPPIC-Net is helping small drug companies, academics, and even individual doctors design and conduct early-stage trials to test the safety and efficacy of promising pain-taming molecules. That information will be handed over to drug manufacturers for late-stage trials, all with the aim of getting new drugs approved by the FDA more quickly.

The first EPPIC-Net trials are just getting underway. Finding better treatments will be no easy task, because the nervous system is a largely unexplored universe of molecules, cells, and electronic connections that interact in countless ways.

The 2021 Nobel Prize in Physiology or Medicine went to scientists who discovered the mechanisms that allow us to feel the most basic sensations: cold and hot. In comparison, pain is a hydra. A simple number might feel definitive. But it’s not helping anyone make the pain go away.

Elisabeth Rosenthal, MD, is Editor-in-Chief of KFF Health News. She worked as an emergency room physician before becoming a journalist. KFF Health News is a national newsroom that produces in-depth journalism about health issues. 

Volunteers Needed for Arachnoiditis Study

By Pat Anson

Kathleen Haynes knows all about the physical and emotional pain that comes from adhesive arachnoiditis (AA), a progressive spinal disorder that causes severe intractable pain.  

She’s had AA for 50 years, after an oily contrast dye used for a myelogram imaging test was injected into her spinal column. The invasive test turned a simple back injury into a living nightmare, with the nerves in her lower spine becoming inflamed and sticking together.

“That oil stayed in my spinal column, surrounded my spinal nerves, and that’s why my nerves clumped together,” Haynes said. “And it just got worse and worse and worse, to the point where I use a wheelchair to get around.”

At the young age of 70, Haines is now pursuing a doctorate degree in Psychology at Walden University. For her dissertation, she’s doing a study about suicide ideation in AA patients. In the past, Haynes had suicidal thoughts herself.

“The pain was just unbearable. And not being believed that I was in pain and not getting the right medication,” she told PNN.

“One of the things that was a deciding factor in doing this study was because I belong to a couple of AA groups on Facebook. And I was struck by the amount of people who go on there and say they're suicidal or say can you please lead me to somebody who does euthanasia?”  

KATHLEEN HAYNES

Haines’ goal is to interview 10 people with AA in the next few weeks who are not currently having suicidal thoughts, but are willing to talk about them. To protect their privacy, participants will be assigned numbers and their real names will not be used. A list of other conditions and sample questions can be found here, along with Haynes’ contact information.  

It’s not the just the pain that makes AA patients suicidal, according to Haynes. Other common factors are being disbelieved, ignored or marginalized by family, friends and doctors. Thoughts about “ending it all” occur so frequently that she thinks every AA patient should be evaluated for suicide ideation.   

“I want to see what people's common denominator is, in talking to them about their suicidality. The goal is to get this study together and get it out to the medical community because they barely recognize AA, yet alone the suicidality their patients face,” she said.

“They need to treat their patients with AA in a way that gives them a desire to live. And get them the treatment team, the providers that they need in order to live fairly comfortable life, despite their pain.” 

Like many other AA patients, Haynes had trouble being believed. She suffered her initial back injury while working for the U.S. Postal Service in the 1970’s, but only recently did the federal government approve her workers’ compensation claim, even though her AA diagnosis and disability happened a long time ago. The Massachusetts woman is now getting appropriate treatment and pain medication.        

To learn more about Haynes’ study and/or make a donation to her research, visit her GoFundMe page.

Rejecting Purdue Pharma’s Bankruptcy Plan Harms Pain Patients, Again

By Crystal Lindell

Turns out the family behind Purdue Pharma wasn’t always acting on the up and up when it came to their money — a revelation that surprises almost no one. But a recent Supreme Court decision punishing them for that has the potential to prolong — and even cause — more suffering for millions of pain patients.

In short, last week the Supreme Court ruled 5-4 that it was wrong for the Sackler family, which owns Purdue, to essentially try to shield some of their money through bankruptcy proceedings. Under a proposed bankruptcy plan, Purdue agreed to settle a massive lawsuit over the fraudulent marketing of the opioid medication OxyContin, which they claimed was less addictive than other opioids.

Specifically, according to an NPR article about the decision, "The ruling upended a carefully-crafted settlement worth roughly $8 billion… (for) all the individuals, states and local governments that had sued over harms from the opioid epidemic.”

The high court’s ruling means the Sackler family is now open to more lawsuits against it, and that some of the previously decided opioid cases could now be re-opened. That’s not just bad for those slated to receive money from those lawsuits, it’s also bad for pain patients. Continuing the opioid lawsuits will only perpetuate the anti-opioid zealotry that’s infiltrated the medical community.

To be honest, on a broad level, I kind of agree with the Supreme Court. If you lose or settle a lawsuit, you should not be able to move your money around by filing for bankruptcy to shield it. The problem I have with the ruling is that it is only going to serve to prolong the failed and harmful strategy of trying to solve opioid-related problems with lawsuits.

The lawsuits are especially damaging because they perpetuate the myth that the biggest sin Purdue committed in regard to OxyContin was claiming the medication wasn’t as addictive as other opioids.

That myth is even referenced on in the Supreme Court opinion:

“Because of the addictive quality of opioids, doctors had traditionally reserved their use for cancer patients and those ‘with chronic diseases.’ But OxyContin, Purdue claimed, had a novel ‘time-release’ formula that greatly diminished the threat of addiction. On that basis, Purdue marketed OxyContin for use in ‘a much broader range’ of applications, including as a ‘first-line therapy for the treatment of arthritis.’”

However, as a pain patient myself, and also as a former OxyContin user, I am here to tell you the truth: Purdue’s biggest sin wasn’t lying about how addictive OxyContin was. No, Purdue’s biggest sin was that they claimed that OxyContin time-released pills lasted 12 hours. In reality they only last about 4-6 hours.

Don’t take my word for it though. The Los Angeles Times reported the same thing in 2016.

“The drugmaker Purdue Pharma launched OxyContin two decades ago with a bold marketing claim: One dose relieves pain for 12 hours, more than twice as long as generic medications… [But] the drug wears off hours early in many people,” the Times said.

Purdue’s lie meant that thousands of patients were not prescribed enough pills to get through the day or the month, leading to two likely outcomes.

In one scenario, patients took an OxyContin when their last one wore off, and then ran out of their medication days or even weeks before their next refill date. They then faced the impossible choice of debilitating withdrawal or seeking medication on the black market.

The second scenario is that they took the medication as prescribed, only every 12 hours, and that meant they went through daily cycles of short bursts of pain relief followed by hours of pain while they wait for their next dose.

The Times also reported that Purdue was very aware of these possible problems, but wanted to maintain the lie that OxyContin lasted 12 hours to make it stand apart from less expensive opioids.  Purdue told doctors to stick to the 12-hour dosing schedule and to prescribe stronger doses if patients complained.  

Here’s the thing, the way to fix the real lie -- about how long the pills last -- is to give patients more opioids, not fewer. So instead of prescribing two 10mg OxyContin per day, the doctor should prescribe four to six 10mg OxyContin per day.

Unfortunately, that is not the lesson doctors learned from OxyContin and the opioid lawsuits. Instead, doctors decided the best solution was to minimize prescribing any opioids to any patient.  As long as these lawsuits continue, medical professionals and law enforcement will be flooded with even more propaganda about how the best way to save lives is to limit opioids.

Maybe one day, we will finally realize just how damaging it has been to make people suffer needlessly by limiting opioid prescriptions. But I fear that as long as the opioid lawsuits continue, that day will be pushed further and further out into the future.

Patients know firsthand that these lawsuits have made many doctors and pharmacists scared of prescribing opioids, even for post-op pain. But opioids are still the only effective treatment for many painful conditions. This leaves patients to languish in suffering or resort to the black market for needed relief.

We could do better than that though. We could actually help people.

FDA and CDC Face Flood of Litigation After Supreme Court Ruling

By Stephanie Armour, KFF Health News

A landmark Supreme Court decision that reins in federal agencies’ authority is expected to hold dramatic consequences for the nation’s health care system, calling into question government rules on anything from consumer protections for patients to drug safety to nursing home care.

The June 28 decision overturns a 1984 precedent that said courts should give deference to federal agencies in legal challenges over their regulatory or scientific decisions. Instead of giving priority to agencies, courts will now exercise their own independent judgment about what Congress intended when drafting a particular law.

The ruling will likely have seismic ramifications for health policy. A flood of litigation — with plaintiffs like small businesses, drugmakers, and hospitals challenging regulations they say aren’t specified in the law — could leave the country with a patchwork of disparate health regulations varying by location.

Agencies such as the FDA are likely to be far more cautious in drafting regulations, Congress is expected to take more time fleshing out legislation to avoid legal challenges, and judges will be more apt to overrule current and future regulations.

Health policy leaders say patients, providers, and health systems should brace for more uncertainty and less stability in the health care system. Even routine government functions such as deciding the rate to pay doctors for treating Medicare beneficiaries could become embroiled in long legal battles that disrupt patient care or strain providers to adapt.

Groups that oppose a regulation could search for and secure partisan judges to roll back agency decision-making, said Andrew Twinamatsiko, director of the Health Policy and the Law Initiative at Georgetown University’s O’Neill Institute. One example could be challenges to the FDA’s approval of a medication used in abortions, which survived a Supreme Court challenge this term on a technicality.

“Judges will be more emboldened to second-guess agencies,” he said. “It’s going to open agencies up to attacks.”

Regulations are effectively the technical instructions for laws written by Congress. Federal agency staffers with knowledge related to a law — say, in drugs that treat rare diseases or health care for seniors — decide how to translate Congress’ words into action with input from industry, advocates, and the public.

Fragmented Health Policy

Up until now, when agencies issued a regulation, a single rule typically applied nationwide. Following the high court ruling, however, lawsuits filed in more than one jurisdiction could result in contradictory rulings and regulatory requirements — meaning health care policies for patients, providers, or insurers could differ greatly from one area to another.

One circuit may uphold a regulation from the Centers for Disease Control and Prevention, for example, while other circuits may take different views.

“You could have eight or nine of 11 different views of the courts,” said William Buzbee, a professor at Georgetown Law.

A court in one circuit could issue a nationwide injunction to enforce its interpretation while another circuit disagrees, said Maura Monaghan, a partner at Debevoise & Plimpton. Few cases are taken up by the U.S. Supreme Court, which could leave clashing directives in place for many years.

In the immediate future, health policy leaders say agencies should brace for more litigation over controversial initiatives. A requirement that most Affordable Care Act health plans cover preventive services, for example, is already being litigated. Multiple challenges to the mandate could mean different coverage requirements for preventive care depending on where a consumer lives.

Drugmakers have sued to try to stop the Biden administration from implementing a federal law that forces makers of the most expensive drugs to negotiate prices with Medicare — a key cog in President Joe Biden’s effort to lower drug prices and control health care costs.

Parts of the health care industry may take on reimbursement rates for doctors that are set by the Centers for Medicare & Medicaid Services because those specific rates aren’t written into law. The agency issues rules updating payment rates in Medicare, a health insurance program for people 65 or older and younger people with disabilities. Groups representing doctors and hospitals regularly flock to Washington, D.C., to lobby against trims to their payment rates.

And providers, including those backed by deep-pocketed investors, have sued to block federal surprise-billing legislation. The No Surprises Act, which passed in 2020 and took effect for most people in 2022, aims to protect patients from unexpected, out-of-network medical bills, especially in emergencies. The high court’s ruling is expected to spur more litigation over its implementation.

“This really is going to create a tectonic change in the administrative regulatory landscape,” Twinamatsiko said. “The approach since 1984 has created stability. When the FDA or CDC adopt regulations, they know those regulations will be respected. That has been taken back.”

Industry groups, including the American Hospital Association and AHIP, an insurers’ trade group, declined to comment.

Agencies such as the FDA that take advantage of their regulatory authority to make specific decisions, such as the granting of exclusive marketing rights upon approval of a drug, will be vulnerable. The reason: Many of their decisions require discretion as opposed to being explicitly defined by federal law, said Joseph Ross, a professor of medicine and public health at Yale School of Medicine.

“The legislation that guides much of the work in the health space, such as FDA and CMS, is not prescriptive,” he said.

In fact, FDA Commissioner Robert Califf said in an episode of the “Healthcare Unfiltered” podcast last year that he was “very worried” about the disruption from judges overruling his agency’s scientific decisions.

The high court’s ruling will be especially significant for the nation’s federal health agencies because their regulations are often complex, creating the opportunity for more pitched legal battles.

Challenges that may not have succeeded in courts because of the deference to agencies could now find more favorable outcomes.

“A whole host of existing regulations could be vulnerable,” said Larry Levitt, executive vice president for health policy at KFF.

Other consequences are possible. Congress may attempt to flesh out more details when drafting legislation to avoid challenges — an approach that may increase partisan standoffs and slow down an already glacial pace in passing legislation, Levitt said.

Agencies are expected to be far more cautious in writing regulations to be sure they don’t go beyond the contours of the law.

The Supreme Court’s 6-3 decision overturned Chevron U.S.A. v. Natural Resources Defense Council, which held that courts should generally back a federal agency’s statutory interpretation as long as it was reasonable. Republicans have largely praised the new ruling as necessary for ensuring agencies don’t overstep their authority, while Democrats said in the aftermath of the decision that it amounts to a judicial power grab.

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

PNN ‘Hummingbirds’ Poem Featured in New Children’s Pain Ward

By Pat Anson, PNN Editor

Over the years, we’ve published several poems submitted by readers who wanted to share their experiences living with pain or having a loved one who does.

One of my favorites was written by Connie Dyste Tucker, a family friend who died nearly a decade ago after a long battle with cancer. While undergoing chemotherapy, Connie found comfort and strength in one of nature’s most fragile and beautiful creatures -- hummingbirds – and wrote a poem about them. Here’s an excerpt:

“Hummingbirds”

I have one of my own,
a hummingbird, bright of feather,
light of wing. She fits into my day,
sipping my sugar, hardly hovering, always  
sparkling.

I can take my pain and put it in my pocket,
walk out the door and say to the scary world,
I am light of feather, swift of wing.  
I am not this sad heavy body,  

I am dreaming of birds, I can fly away from this.
I can sip sugar. I can eat my words.

Connie’s poem resonated with the staff at Great Ormond Street Hospital for Children in London, which is ranked as one of the world’s best pediatric hospitals.

The hospital recently opened a new pediatric pain ward to help children and their families cope with the many challenges of living with chronic pain. They call it their “Hummingbird Unit.”

I’m delighted to report that Connie’s poem is featured on a wall in the patient lounge of the new pain ward.

“HUMMINGBIRD UNIT” AT GREAT ORMOND STREET HOSPITAL

“I thought you might want to see what we have done with Connie’s poem and have included a picture to share,” Will Sadeghi, the ward’s project manager, wrote in an email.    

“The ward was recently opened to paediatric patients, who take part in a three-week pain management programme. All wards at Great Ormond Street Hospital are named after animals, and as you will see from the window graphic in one of the attached photos, we have tried to stay true to the Hummingbird theme.”

The origins of Great Ormond Street Hospital — known as GOSH in the UK — date back to 1852, when it became the first hospital in England to provide beds exclusively to children. Queen Victoria and Charles Dickens were among its earliest supporters, and later authors Roald Dahl and J.M. Barrie, the creator of Peter Pan, became generous donors

GOSH was nationalized in 1948 and became part of the UK’s National Health Service. Princess Diana was president of the hospital from 1989 until her death.

Clearly, GOSH has a lot of history behind it. And now Connie and her poem are a part of it. She would be so proud.

“We stop at nothing to help give seriously ill children childhoods that are fuller, funner and longer,” GOSH’s charitable foundation says on its website. “Because we believe no childhood should be lost to illness.”