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.” 

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.

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. 

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. 

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.”

How I Escaped From the Darkness

By Mia Maysack, PNN Columnist

At this moment in my life, I’ve chosen to continue on -- out of spite, if nothing else. I’ve chosen to quit entertaining the intrusive, dark thoughts that creep in and try to take over.

However, as an individual enduring a chronically ill and persistently pained existence, I’ve spent a lot of time torn between putting forth my best efforts for a great life and just wanting it all to be over.

We’re urged to reach out to loved ones when we’re sad or depressed. But everyone has their own problems and most likely wouldn't know what to do with ours. We don't want to burden anyone, despite their claims that they'd rather get a call about someone’s troubles than receive an announcement about their death.

Our society is sick enough to promote or even force life, but then does little to improve the quality of it for people who need it most.

Rather than sitting with you in the thick of your sh*t, we’re assured that "You got this!" as they wash their hands clean. Your very real experience is disregarded because it makes people uncomfortable.

I realized death was something I’d lusted after when a friend recently “unalived” herself. Underneath the immense hurt and grief, I was soon overcome with envy.

Each time I'd work my nerve up, there was always a reason not to, for the sake of other people. Someone's birthday or a holiday would be around the corner. Somebody would reach a milestone I'd wish to celebrate. Then my deep longing would be set to aside for a while.

I'd even forget about it sometimes, despite the constant gnawing of despair that’d inevitably claw its way through my soul from the inside out.

I would tune out the despair and do my best to concentrate on things like blessings and gratitude instead. Then I'd get down on myself for fixating on all that was "wrong" in my life, as opposed to simply allowing all that was *right* to be enough.

There came a point that it didn't matter how much of myself I gave away to the world, the extent I'd show up for others, volunteer my time, give away my possessions or donate my money.

It also didn't seem to make much of a difference how busy I kept myself or how many meditations I did on thankfulness; with the reminder that we're all one in this world, connected by the singular vibrational pulse of our shared universe.

Blah, blah, blah.

I did everything I could reasonably think of to pour into myself. I loved fiercely, gave my all to those I cared about, did what I could to assist others in their misery, and made it my life's mission to ease suffering in any minor way that was within my capabilities.

The truth is that, even without my spirit exiting this realm, I've already died several times over.  

The selfishness of it all is when a point is reached that we’re no longer able to love this world or those in it more than we absolutely despise existing.

I think this is where people get things twisted when they attempt to make sense of why someone would decide to end their life.

It baffles me to comprehend that there are some who've never felt like this, who are so privileged that they cannot even begin to fathom or wrap their head around it. It also rubs me wrong when people try to make another person’s death all about themselves.

Can you imagine how the actual individual must have felt to reach a point that this was believed to be their absolute last, best and only option?  I think as humans we can only endure so much, to the point when there is no turning back.

Being on your own to sort through it all certainly doesn't make things easier. Your loved ones often misunderstand you or just skip straight to worry. The professionals approach things from a data standpoint and are quick to blemish your mental health record. Authorities report and may even incarcerate you “for your own protection.” Communities consider open discussion of these topics taboo. And the churches will condemn you to hell --- as if you don't already feel like that's where you're living.

Where does a person turn?  Where can we get actual help?

I have come to accept that my most authentic answer, based on my own experience, was nowhere. Nowhere other than within.

I’ve shared what has worked for me to make it as far as I have. I’ve also been very candid about my less than perfect moments. I’ve elevated those around me and did everything within my power to uplift each person I'd ever come into contact with.

I think we can hurt to a point we just do not recover from it. We can only take so much and each of us has a limit. There are certain things that can occur in a person's life where their brain doesn't return to a state of normalcy. You reach a sort of depletion that is permanent, to the point it doesn't seem to matter anymore. Because what we’re enduring feels like it’s not survivable.

A person can reach a point of believing that the pain of their absence cannot come close to the agony they’ve endured just about every day of their life.

I've chosen to prefer being alive and in pain, as opposed to laying 6 feet underground experiencing nothing. That's the bottom line for me. I think the fact that we've hushed these conversations for so long plays a role in killing people. As a society, we need to take a look at that and accept some responsibility.

What we don’t tend to, withers. Thus, I am taking the remaining power I still possess and using it to water myself. I invite you all to do the same.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.

A Pained Life: Build a Better Mousetrap

By Carol Levy, PNN Columnist

I was watching an old TV series – “Diagnosis Murder” -- about a doctor who also solves mysteries. In one episode, Dr. Mark Sloan (Dick Van Dyke) was in a patient's room with her family. He told them their mother was in the early stages of Alzheimer's.

Her son asked, in a tremulous voice, “What can we do?”

Dr. Sloan smiles and said there was good news, along with the bad.

“It's a terrible disease, but on the positive side there are new drugs being developed all the time,” he said.

That got me mad. And it seemed as if every commercial I saw during and after the show was touting new medications, for everything from cancer to erectile dysfunction. Listening to them made me ever madder.

According to the National Cancer Institute, about 40% of us will be diagnosed with cancer at some point in our lives. Developing new cancer treatments, especially ones that are less harmful and painful to patients, is a necessity. After all, cancer kills.

Studies have found that erectile dysfunction affects about 18% of men. ED is a troublesome and embarrassing problem to have, but you won’t die from it.

Why do they spend so much time and money developing new drugs (and commercials) for medical conditions? Simple answer: the drugs make a lot of money for the pharmaceutical industry, even when a relatively small number of people may benefit from them.

Chronic pain may not kill in the typical sense, although many deaths can be traced back to poorly treated pain as an ancillary cause. According to a recent study, there are more new cases of chronic pain among U.S. adults than diabetes, depression and high blood pressure.

Given that the number of people with chronic pain is larger than many other conditions for which they are developing new drugs, why are we left out?

Many of us have had the experience of a doctor taking us off opioids or significantly reducing the dose, even when we’ve taken them safely and responsibly for years. The government has created fear among medical providers, especially those who specialize in pain management, making them uncomfortable prescribing opioids.

So, the question arises: Why isn't more being done to research and develop new non-opioid treatments for pain?

What comes to mind are mousetraps. Until they build a better mousetrap, until they create new and effective pain medications that are not opioid-based, we're stuck with what we have. Build a better mousetrap and the world will beat a path to a pharmaceutical company's door.

There is big money to be made in finding new pain medications. And there are plenty of mice. Why not build a better mousetrap?

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

I Was Kicked Out of a Support Group for Having Chronic Pain

By Ann Marie Gaudon, PNN Columnist

Recently, after the death of my mother, I registered to participate in a grief support group. The group met in the evening, which is good for able-bodied day workers, but a very poor time for me as far as chronic pain goes.

After working and the efforts of the day, my body is tired and worn down; which is a terrific setting for pain and other symptoms to come visit. I knew the group’s meeting time would be difficult, but was determined to do my best – and let me be very clear, I did just that.

The problem was, I proved to be all-too-human and they proved to be all too discriminatory.

By the 6-week mark, I had missed two meetings. Both times it was due to pain. I couldn’t get in or out of my car and was in no shape to stand for two hours. The furniture was too large for me to sit in with my back against the chair and my feet on the floor. No support is a no-go for my back, so I must stand in most places I attend. It’s nobody’s fault (well, maybe furniture makers) and I’ve adapted my life to it. Last time I checked, I was 157 cm tall (5’2”) and don’t have the height to sit properly in standard-sized chairs.

Anyone who knows me well knows that I have multiple pain conditions. It all started when I was 19 years old and much more has come my way as I age.

Anyhow, back to my sins of being human. The morning after I missed the second meeting, I received a telephone call to tell me that I had missed too much time and it would have a negative effect on the group’s bonding. I could not return. That was their policy.

At the time of the call, I had just gotten out of bed, my head was brain-fogged, and I wasn’t really registering the message. It took a little bit for my brain to kick-in and realize I had been kicked out! I was hurt and angry. but mostly I really wanted to advocate for everyone in pain. So I decided to send them an email.

“By telling me I was no longer welcome, you chose not only to dismiss my grief, but also to dismiss me because I am not an able-bodied person. These dismissals are not only unkind and quite the opposite of support, but also inflict moral injury to a person who is already suffering,” I wrote in my email.

I also said that I didn’t want or expect a reply. However, someone took the time to write back an extremely ignorant and dismissive email. I would gladly share it with you, but curiously the email ends with this legal disclaimer:

“This communication may contain confidential & privileged material for the sole use of the intended recipient. Any unauthorized review, use or distribution by others is strictly prohibited. If you have received this message by mistake, please advise the sender by reply email & delete the message. Thank you.”

I was so utterly shocked at being kicked out of a “support” group for having an invisible disability that I needed to speak with someone who knows about these things. Now I really needed support!

I was grateful for the opportunity to explain my experience with Kattlynne Grant, who is working on her second Masters and a PhD in Disability Studies at Brock University in Ontario. In addition to studying disability, Ms. Grant also lives with an invisible disability. I found her to be a great support for all of us:

“Just by the fact that someone responded to you when asked not to, it seems that they were more concerned about defending themselves and not hearing you as a person,” she told me. “By telling you that this happens to everyone who misses two sessions shows they really miss the mark of the implicit bias built into that policy – where it favours a certain type of embodiment over others because it assumes/expects a ‘normal’ level of function.  It is very exclusionary to those with disabilities, as it means that those who may struggle to keep with normative embodied expectations will not have access to their services.”

Someone within the support group organization took the time to shift the blame onto me and argue that I was in the wrong for not making them aware. Aware of what, my disability? What would they have done with that information? 

We all signed an agreement that we would do our best to attend all eight sessions. I did so wholeheartedly and meant it. I was never not committed to the group.

The facilitator said they realize that sometimes “life happens” and if we must miss a session, to just call ahead and let them know, which I did.  Nobody said two strikes and you’re out – not that it would have made it right. I’m only saying this because it was not even part of the conversation.

I was wholly offended to get a finger pointed back at me with passive aggressive statements such as “all we ask for is commitment” – which is all that I gave. I felt like I had been swept back to a time when disabled people were seen as a scourge on society, with no ethical or legal rights.

It was all very upsetting and offensive. I am upset to even have to share this with you, but it is what I need to do. I am being totally honest when I tell you that I was blind-sided when I was kicked out.

Ms. Grant had more to say about to these types of experiences.

“This move of shifting blame truly exposes how deeply that the ‘ideology of ability’ is ingrained within their practices,” she said. “The marginalized are often made responsible for their own adversity and exclusion, rather than acknowledging their role in this and the need for structural change.”

The Law Commission of Ontario describes ableism this way:

“A belief system, analogous to racism, sexism, or ageism, that sees persons with disabilities as being less worthy of respect and consideration, less able to contribute and participate, and of less inherent value than others. Ableism may be conscious or unconscious, and may be embedded in institutions, systems or the broader culture of a society.” 

Here is how the Ontario Human Rights Commission defines systemic discrimination:

“Systemic or institutional discrimination consists of attitudes, patterns of behaviour, policies or practices that are part of the social or administrative structures of an organization or sector, and that create or perpetuate a position of relative disadvantage for people with disabilities. The attitudes, behaviour, policies or practices appear neutral on the surface but nevertheless have an adverse effect or exclusionary impact on people with disabilities.”

Bringing awareness to the ways that we unintentionally reinforce systems of privilege and exclusion should be important to any organization, but especially for a support group. It would be a way to reduce the pain and grief of future members, not just add to them. 

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.  

A Pained Life: Stop the Denial

By Carol Levy, PNN Columnist

For many of us, pain is sporadic. Sometimes we know exactly when it will be start or what will set it off. Other times, it may hit spontaneously.

When my trigeminal neuralgia pain started in 1976, it was constant, triggered and spontaneous. Now it can be triggered by any touch to the affected area. Or it can come out of the blue.

When I don’t have pain, it often lulls me into denial. I’ll think, “Hey, I'm okay!” Denial is one of my defense mechanisms. I don't have the pain right now, so I won't have it. 

And then, like a freight train bearing down on me, the pain hits. That's when the denial ends. Sometimes it takes only a few minutes to recover, sometimes much longer.

Denial of pain also comes from friends, colleagues or family. It often results in an argument or anger. Does that change their denial? Not often.

Is it worth the hurt and emotional pain when we try to change their minds, when we try to convince them of the reality of our pain? Again, not often.

Many of us have had medical professionals refuse to accept our pain. Years ago, I found this note in my neurologist's chart: “There are days like today when I believe in her pain.”

It wasn't his to believe in or not. If he chose not to believe me, then the remedy was simple. Fire me as a patient. It is not worth debating with a doctor about the existence of our pain.  

A big pain trigger for me is eye movement. Any eye usage causes pain. I can read, sometimes for as long as 20 minutes, before the pain starts yelling at me and I am forced to put the book away.  

Too many times I don't want to give in to the pain. Just one more paragraph, I’ll think, or at least a sentence. If I try to deny the pain and continue to read, it grows stronger, bigger, a green hulk of pain.  

Then I have no choice. I fling the book away and wait, sometimes for hours, for the pain to subside to a tolerable level. I could have stopped the pain. I could have taken control over it. All I had to do was accept that I can't read for as long as I want. But, like a food addict, the pleasure I get from reading overwhelms my common sense.

For those of us struggling to stop denying the pain when we know we should, the denial only adds to our battle. We call ourselves “survivors” or “victims.” Those are words of war.

For me, the war isn’t over. If and when I win, I'll stop the denial. 

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

You Have the Right to Lose Your Rights

By Mia Maysack, PNN Columnist

After experiencing medical injustice and malpractice multiple times, I began advocating for myself and others who live in similarly painful ways.

It didn't take long to realize that the concept of "pain" is universal, but different for each of us. We all experience pain to varying degrees, but our perspectives differ. Each individual possesses an existence that is unique to them alone.

All that is to say that my advocacy efforts shifted away from "my" cause and instead became “ours.” It has continued evolving to the point where it is no longer solely fixated on healthcare, but instead acknowledges all systems (political, economic, social, cultural, etc.) and how they tie together and influence each other.

That's why I no longer identify specifically as a "patient advocate."  I lost patience with all the sh*t!  Now I'm just someone who believes in rights and liberation for all, understanding there are different ingredients in that recipe for each person.

The following is a recent example of a situation I experienced that connected different systems together – and not in a good way. There are far too many examples of things like it leading to a person's harm, hurt or worse. My aim is to make an illustration of the hypocrisy behind it and the hurdles it creates.

‘We Don’t Make the Laws’

On some days, I just cannot get outta bed. Other days, I may be able to take a little trip somewhere.  Why not enjoy different scenery, apart from the four walls that seem to close in on me?

While taking a drive, I passed police officers on two separate occasions. Although I thought nothing of it either time because I had no reason to, they pulled me over. When they approached the vehicle to request my license, I respectfully asked why this was happening. 

Their reply was: “Your tints."

As someone disabled by a neurological disorder that makes me very sensitive to light, tinted windows assist in making moments of normalcy possible for me. This amenity even has the approval of a world-renowned neurology department in one of the top teaching hospitals in the country, which happens to be located in my state. I provided the proof of that claim to the officers, and what happened next is where the system fails.

Although it was acknowledged that my tints are for a health issue, it was also explained to me that even with proper documentation, I'm still not legally allowed to have tinted windows on my car. I've had them for years and driven endless places without an issue, but now I was being told that I can’t have them, because dark windows can be a safety issue.  

“Driving isn't something I'm always able to do,” I protested. “The law is prohibiting a tool that I need and helps keep myself and others safe."

"We don't make the laws," the officers said.

I understand that. But I also took the opportunity to explain that people in positions of authority -- whether a cop, doctor or elected official -- are public service workers. That means they exist to aid, assist, support and contribute to the betterment of those they are in the position to serve: Us.

Tints are a petty example in the grand scheme of things, but they speak to a deeper issue of policies and regulations being put in place that do not benefit each individual on a case-by-case basis.

Simply put, the law does not get to dictate what’s best for our health. This is an issue I’ll continue addressing, perhaps even in court, because it’s difficult enough to survive without having your liberties threatened. 

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.

Will Bird Flu Be the Next Pandemic?

By Amy Maxmen, KFF Health News

Headlines are flying after the Department of Agriculture confirmed that the H5N1 bird flu virus has infected dairy cows around the country. Tests have detected the virus among cattle in nine states, mainly in Texas and New Mexico, and most recently in Colorado, said Nirav Shah, principal deputy director at the Centers for Disease Control and Prevention, at a May 1 event held by the Council on Foreign Relations.

A menagerie of other animals have been infected by H5N1, and at least one person in Texas. But what scientists fear most is if the virus were to spread efficiently from person to person. That hasn’t happened and might not. Shah said the CDC considers the H5N1 outbreak “a low risk to the general public at this time.”

Viruses evolve and outbreaks can shift quickly. “As with any major outbreak, this is moving at the speed of a bullet train,” Shah said. “What we’ll be talking about is a snapshot of that fast-moving train.” What he means is that what’s known about the H5N1 bird flu today will undoubtedly change.

With that in mind, KFF Health News explains what you need to know now.

Q: Who gets the bird flu?

Mainly birds. Over the past few years, however, the H5N1 bird flu virus has increasingly jumped from birds into mammals around the world. The growing list of more than 50 species includes seals, goats, skunks, cats, and wild bush dogs at a zoo in the United Kingdom. At least 24,000 sea lions died in outbreaks of H5N1 bird flu in South America last year.

What makes the current outbreak in cattle unusual is that it’s spreading rapidly from cow to cow, whereas the other cases — except for the sea lion infections — appear limited. Researchers know this because genetic sequences of the H5N1 viruses drawn from cattle this year were nearly identical to one another.

The cattle outbreak is also concerning because the country has been caught off guard. Researchers examining the virus’s genomes suggest it originally spilled over from birds into cows late last year in Texas, and has since spread among many more cows than have been tested. “Our analyses show this has been circulating in cows for four months or so, under our noses,” said Michael Worobey, an evolutionary biologist at the University of Arizona in Tucson.

Q: Is this the start of the next pandemic?

Not yet. But it’s a thought worth considering because a bird flu pandemic would be a nightmare. More than half of people infected by older strains of H5N1 bird flu viruses from 2003 to 2016 died. Even if death rates turn out to be less severe for the H5N1 strain currently circulating in cattle, repercussions could involve loads of sick people and hospitals too overwhelmed to handle other medical emergencies.

Although at least one person has been infected with H5N1 this year, the virus can’t lead to a pandemic in its current state. To achieve that horrible status, a pathogen needs to sicken many people on multiple continents. And to do that, the H5N1 virus would need to infect a ton of people. That won’t happen through occasional spillovers of the virus from farm animals into people. Rather, the virus must acquire mutations for it to spread from person to person, like the seasonal flu, as a respiratory infection transmitted largely through the air as people cough, sneeze, and breathe. As we learned in the depths of covid-19, airborne viruses are hard to stop.

That hasn’t happened yet. However, H5N1 viruses now have plenty of chances to evolve as they replicate within thousands of cows. Like all viruses, they mutate as they replicate, and mutations that improve the virus’s survival are passed to the next generation. And because cows are mammals, the viruses could be getting better at thriving within cells that are closer to ours than birds’.

The evolution of a pandemic-ready bird flu virus could be aided by a sort of superpower possessed by many viruses. Namely, they sometimes swap their genes with other strains in a process called reassortment. In a study published in 2009, Worobey and other researchers traced the origin of the H1N1 “swine flu” pandemic to events in which different viruses causing the swine flu, bird flu, and human flu mixed and matched their genes within pigs that they were simultaneously infecting. Pigs need not be involved this time around, Worobey warned.

Q: Can I get sick from contaminated milk?

Cow’s milk, as well as powdered milk and infant formula, sold in stores is considered safe because the law requires all milk sold commercially to be pasteurized. That process of heating milk at high temperatures kills bacteria, viruses, and other teeny organisms. Tests have identified fragments of H5N1 viruses in milk from grocery stores but confirm that the virus bits are dead and, therefore, harmless.

Unpasteurized “raw” milk, however, has been shown to contain living H5N1 viruses, which is why the FDA and other health authorities strongly advise people not to drink it. Doing so could cause a person to become seriously ill or worse. But even then, a pandemic is unlikely to be sparked because the virus — in its current form — does not spread efficiently from person to person, as the seasonal flu does.

Q: What should be done?

A lot! Because of a lack of surveillance, the U.S. Department of Agriculture and other agencies have allowed the H5N1 bird flu to spread under the radar in cattle. To get a handle on the situation, the USDA recently ordered all lactating dairy cattle to be tested before farmers move them to other states, and the outcomes of the tests to be reported.

But just as restricting covid tests to international travelers in early 2020 allowed the coronavirus to spread undetected, testing only cows that move across state lines would miss plenty of cases.

Such limited testing won’t reveal how the virus is spreading among cattle — information desperately needed so farmers can stop it. A leading hypothesis is that viruses are being transferred from one cow to the next through the machines used to milk them.

To boost testing, Fred Gingrich, executive director of a nonprofit organization for farm veterinarians, the American Association of Bovine Practitioners, said the government should offer funds to cattle farmers who report cases so that they have an incentive to test. Barring that, he said, reporting just adds reputational damage atop financial loss.

“These outbreaks have a significant economic impact,” Gingrich said. “Farmers lose about 20% of their milk production in an outbreak because animals quit eating, produce less milk, and some of that milk is abnormal and then can’t be sold.”

The government has made the H5N1 tests free for farmers, Gingrich added, but they haven’t budgeted money for veterinarians who must sample the cows, transport samples, and file paperwork. “Tests are the least expensive part,” he said.

If testing on farms remains elusive, evolutionary virologists can still learn a lot by analyzing genomic sequences from H5N1 viruses sampled from cattle. The differences between sequences tell a story about where and when the current outbreak began, the path it travels, and whether the viruses are acquiring mutations that pose a threat to people. Yet this vital research has been hampered by the USDA’s slow and incomplete posting of genetic data, Worobey said.

The government should also help poultry farmers prevent H5N1 outbreaks since those kill many birds and pose a constant threat of spillover, said Maurice Pitesky, an avian disease specialist at the University of California-Davis.

Waterfowl like ducks and geese are the usual sources of outbreaks on poultry farms, and researchers can detect their proximity using remote sensing and other technologies. By zeroing in on zones of potential spillover, farmers can target their attention. That can mean routine surveillance to detect early signs of infections in poultry, using water cannons to shoo away migrating flocks, relocating farm animals, or temporarily ushering them into barns. “We should be spending on prevention,” Pitesky said.

Q: What could happen to people who get the H5N1 bird flu?

No one really knows. Only one person in Texas has been diagnosed with the disease this year, in April. This person worked closely with dairy cows, and had a mild case with an eye infection. The CDC found out about them because of its surveillance process. Clinics are supposed to alert state health departments when they diagnose farmworkers with the flu, using tests that detect influenza viruses, broadly. State health departments then confirm the test, and if it’s positive, they send a person’s sample to a CDC laboratory, where it is checked for the H5N1 virus, specifically. “Thus far we have received 23,” Shah said. “All but one of those was negative.”

State health department officials are also monitoring around 150 people, he said, who have spent time around cattle. They’re checking in with these farmworkers via phone calls, text messages, or in-person visits to see if they develop symptoms. And if that happens, they’ll be tested.

Another way to assess farmworkers would be to check their blood for antibodies against the H5N1 bird flu virus; a positive result would indicate they might have been unknowingly infected. But Shah said health officials are not yet doing this work.

“The fact that we’re four months in and haven’t done this isn’t a good sign,” Worobey said. “I’m not super worried about a pandemic at the moment, but we should start acting like we don’t want it to happen.”

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

Meet the Chronic Pain Patient Running for Arizona Legislature

By Barby Ingle, PNN Columnist

As a rare disease and chronic pain patient, I have spent over 20 years advocating for others and myself in the pain community. I’ve worked on legislation to help patients in more than 30 states, including my home state of Arizona, where two of the bills I supported have become law.

I am now running for the Arizona House of Representatives from District 7, which includes Pinal, Gila, Coconino and Navajo counties, as well as the cities of Flagstaff and Apache Junction, where I live.

My campaign focuses on healthcare access, pain management and disability rights. I believe that everyone should have access to individualized healthcare and proper pain management. This can get people working again and participating in society, which would ultimately save taxpayers money.  

In a recent interview with the Arizona Liberty Podcast, I shared my experiences running for office as a chronic pain patient. I explained that I was running to help make a difference in my community and to create positive change for those often overlooked by the political system. 

As a patient with algoneurodystrophy, a severe nerve disease also known as Complex Regional Pain Syndrome (CRPS), running for office is not an easy task. I have faced many challenges during my campaign, including physical limitations and the need for frequent breaks. Sometimes I have to sit down while everyone around me is standing.  

I am determined to push through these challenges to make a difference. I believe my unique perspective as a chronic pain patient can inspire others to engage in the political process and advocate for their needs. 

In addition to my campaign work, I am a motivational speaker, author, and the immediate past president of the International Pain Foundation. Over the years, I have used my platform to raise awareness about chronic pain and to advocate for better treatment options. Education and awareness are crucial to improving the lives of those with chronic pain. 

My campaign has made waves in my district and garnered attention from the pain community, with financial support and endorsements from patients and providers. Volunteers are also helping me get the word out about my candidacy.

I want laws that restore the patient-provider relationship and give pain management providers the ability to treat each patient individually.

I want to change Arizona’s “red cap” law, which requires all Schedule II opioids dispensed by a pharmacist to have a red cap, in addition to a warning label about potential addiction. The label is fine, but the red cap stigmatizes pain patients and the medications they need. 

We are also currently short about 5,000 healthcare providers in Arizona, a state that attracts many senior citizens and patients with chronic or rare diseases who need specialized care. We must address that so all Arizonans can get the healthcare they deserve.

I hope my dedication and perseverance will inspire others to fight for their communities and better healthcare options. Despite the adversity we all face, positive change is possible.

You can learn more about me and my campaign at barbyingle.com.  I hope to get your vote in the Republican primary on July 30, 2024. 

Painful Choices About a Safe Space

By Cynthia Toussaint, PNN Columnist

It’s no secret. For me, there’s no better medicine than self-care.

To that point, I’m a proud member of my local YMCA. In fact, it’s been my ultimate safe-space for 15 years: around the block, accessible, a generous lap swimming pool, topped by a loving community of warm and caring people. A lot of perfect for someone who can’t walk a block due to Complex Regional Pain Syndrome, but can swim a mile.

To give back some, I’ve done quite a bit of fundraising to provide low-cost memberships for families in need, and landed one of the Y’s aquatic teachers a national ABC News print piece, the angle being the benefits of pool therapy for women in pain as I believe devotedly in the healing power of water.

All was going swimmingly, until COVID. When we returned in mid-2021, my heart sank when I spied a new member, Annie, who I sensed was going to be trouble with a capital T. What little lap swimming she did was overwhelmed by her excessive yelling and joke-telling mid-pool with the lifeguard.

Day after day, I became increasingly stressed while others rolled their eyes and donned ear plugs. To make matters worse, Annie soon blew past personal boundaries by jumping in on my conversations, often physically pulling friends away from me. My place of serenity was turning into a high-decibel scrum.      

CYNTHIA TOUSSAINT

It dawned on me that what was driving Annie’s aberrant behavior was a boatload of childhood trauma. She was deregulated and manic, showing earmarks of a deeply wounded woman. Annie flouted pool rules by wearing inappropriate, oversexualized swimwear (shorts and a braless t-shirt) with no cap for her long, black locks.

In one of the few encounters with Annie before things went south, she boasted about freezing her brother out, emphasizing all the legal folk he had to circumvent to get to her. Annie’s cackle as an exclamation point, her pure joy of hurting another person, was darkly disturbing.                     

One day, out of the blue, a deep freeze set in as Annie began avoiding me. This was terribly awkward, compounded by the Y pool and dressing room being an intimate place where everyone knows everyone’s business. I continued basic pleasantries until Annie yelled me down for doing so.

Next day, in an attempt to fix things, I asked Annie if I’d done something to offend her. Without looking my way, she briskly responded, “No, nothing’s wrong. We’re fine.” But I knew better.

Bad turned to worse when, at that point, Annie completely shut me out. It was as though I didn’t exist as she avoided eye contact altogether. This tactic was deeply uncomfortable and hurtful as she appeared to be in good standing, even sweet, with others. 

Due to Annie’s puzzling cruelty, I started dreading going to my “safe space.” My lower-body pain amp’d and my nervous system was in fight or flight mode before I’d head out to the Y. Even my anticipation the day prior was becoming unhealthy, and I often woke in the night with worry.

Because I couldn’t bear to lose my beloved pool and community, I went to a therapist whose assessment provided strong insight. She suspected Annie was “negatively transferring,” meaning that because I remind her of an abusive person in her childhood, she’s delusional about my power over her. My psychologist advised that this is a targeted psychotic process and, for safety sake, I swim elsewhere.  My close friends seconded that emotion. 

With heavy heart, I tried other Ys and fitness centers. In the end though, none of them worked because of my pain and limitations, e.g., I had to use my wheelchair to get to the pool, there were no exit stairs, and/or my partner and caregiver John couldn’t run necessary errands because we were far from home.

When I fearfully returned to my now toxic Y, John accompanied me in the pool to rehab an injury and offer support in the event of an encounter. Annie’s behavior immediately escalated when she spread a nasty rumor about me to a fellow swimmer who I adore. Zoe shared the gossip out of concern for my well-being, along with being disturbed by the grim energy now shrouding our community.

Before entering the pool the next day, Annie yelled at me twice and, for the first time, physically threatened me by raising her hand to my face. That was it. I went to member relations and made a thorough complaint. Luckily, Zoe, who’d witnessed the happenings, made one as well.

Fortunately, since the Y spoke to Annie, her behavior has simmered. While still avoiding conversation and eye contact, she’s not threatening me, though I’m aware her anger’s just below the surface. Better, but far from okay. What was once heavenly, now casts a pall.

If I was a fully functional person without high-impact pain, I’d have left this Y many moons ago and created a healthy community elsewhere. But because of limitations and specific needs, my only choice is to tolerate an unsafe, dysfunctional situation, to make the best of a bad.

Let’s face it. My choice was really no choice. And that’s the way it is with folk hammered by pain and disability. Pickings are slim and the best solutions are generally the ones that are physically do-able. This not only applies to our places of exercise and community, but also where we live, shop and work. Really, everything we do.   

But let’s not let a bully bury the lead. Come hell or high water, I’m continuing to swim, which is one of the best self-care cards I hold. And when it comes to wrangling with the pitfalls of pain and chronic illness, holding onto what health we can maintain and preserve, is always our best choice.               

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 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.”