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.”

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.

Making a Monkey Out of Western Medicine

By Pat Anson

When it comes to using plants to self-medicate, chimpanzees and other primates may be a whole lot smarter than their human counterparts.

The latest evidence comes in a new study published in PLOS ONE, which found that wild chimpanzees consume plants and trees with medicinal properties that relieve pain, reduce inflammation and fight infection. The chimp study follows right on the heels of another recent observational study, about an orangutan that used a plant to help heal a facial wound.  

An international team of researchers spent 8 months following two groups of chimpanzees in Uganda’s Budongo Forest, recording what plants and trees the chimps ate, and whether they were sick or injured. They also analyzed the animals’ feces and urine to check for parasites and elevated levels of immune cells.

The researchers identified 13 plant species with little nutritional value that the chimps seem to instinctively know would help them feel better and recover from illness. The animals would either swallow the leaves whole or chew on bitter bark and tree sap.  

One adult chimp with a severe hand injury was observed moving away from his group to spend a few minutes alone eating a fern called Christella parasitica. When researchers later tested the fern, they found it had “highly anti-inflammatory properties” that may have reduced pain and swelling in the chimp’s hand.

Other chimps with gastrointestinal problems were seen chewing on the bark of the Alstonia boonei tree, which has long been used by indigenous natives to treat snake bites, asthma and wounds.

Notably, both Christella parasitica and Alstonia boonei are cyclooxygenase-2 (COX-2) inhibitors, the same enzyme that is targeted by aspirin and other nonsteroidal anti-inflammatory drugs (NSAIDs) to reduce inflammation and relieve pain and fever.

Rather than banning or restricting plant-based medicines -- as we have seen with cannabis, kratom and opium -- researchers say we should be looking at “forest pharmacies” for ways to benefit our own healthcare.

“Our findings of strong antibacterial growth inhibition across numerous plant species growing in Budongo have promising implications for our ability to discover novel compounds in existing forest habitats,” researchers said.

“As we learn more about the pharmacological properties of plants ingested by chimpanzees in the wild, we can expand our understanding of their health maintenance strategies. Our results provide pharmacological evidence, from in vitro assays of plant parts consumed by wild chimpanzees collected in situ, for the presence of potent bioactive secondary plant metabolites in Budongo chimpanzee diets for a variety of potential illnesses.”

Whether medicinal plants are consumed intentionally or unwittingly by chimps and other animals remains an open question. But the field of “zoopharmacognosy” – the study of animals using plant-based medicine – could be the answer to many chronic illnesses that Western medicine can’t cure or treat effectively.

“For this to happen, however, it is imperative that we urgently prioritize the preservation of our wild forest pharmacies as well as our primate cousins who inhabit them,” researchers concluded.

Rates of Cannabis Use Disorder Rising for Medicare Patients

By Pat Anson

A new FDA study is documenting the growing use of cannabis by seniors and how some are being diagnosed as having “cannabis use disorder” by their doctors.

A research team led by FDA epidemiologist Silvia Perez-Vilar, PharmD, analyzed the health data of nearly 56 million Medicare beneficiaries aged 65 and older. They looked for Medicare claims that included at least one of the many billable diagnostic codes for cannabis use disorder (CUD).

There are over three dozen such codes, which include everything from cannabis intoxication and dependence to delusions, psychosis and “perceptual disturbance” – a diagnosis that can mean anything from not being able to recognize words to seeing things that aren’t there. There are even CUD codes for “unspecified” symptoms of cannabis use and for being in remission.

The research findings, recently published in JAMA Network Open, found that Medicare claims for CUD have steadily risen in recent years, especially in states where cannabis was legalized for medical or adult recreational use.

“Rates of cannabis-related disorder encounters increased from 2017 through 2022 among US Medicare-insured older adults. We observed the highest rates in states or territories that legalized adult and medical use of cannabis,” they wrote. “Overall, data suggest that increasing rates of health care encounters documenting cannabis-related disorders among older adults might be associated with the type of cannabis legalization.”

What were these “increasing rates” documenting CUD? In states where cannabis is legal, about 45 CUD cases were filed in 2022 for every 10,000 Medicare claims. That’s about 0.45% of all claims – not a large amount by any means. The CUD rate was even lower in states where cannabis is illegal, less than 0.28%.

Those may be rock bottom rates, but the researchers noted that “differences in cannabis use patterns and perception of risk may influence policy changes.” Exactly what kind of policy changes are warranted aren’t spelled out, but it implies there should be more screening for CUD.  

Another recent JAMA study called for U.S. primary care physicians to start screening all patients for CUD, regardless of age or even whether they currently use cannabis. Patients identified as high risk cannabis users should then be referred for “possible addiction treatment.”

Treatments for CUD are currently limited to counseling and cognitive behavioral therapies. Unlike opioid use disorder, there are no FDA-approved pharmaceutical treatments for CUD, although there are several such drugs in the pipeline. One is being tested in clinical studies by Indivior, the company that makes Suboxone for opioid use disorder.

Cannabis vs. Opioids

Many patients who live with pain are turning to cannabis as an alternative to opioids, which are increasingly difficult to obtain. In a recent PNN survey, over 30% of pain patients said they had used cannabis for pain relief. Many did so because they couldn’t get an opioid prescription or had problems getting one filled.

“I have a medical marijuana referral and my doctor at the Cleveland Clinic flat out refuses to write me any prescriptions for any opioids. Bunch of BS,” one patient told us.

“I am very lucky. My pain management doctor supports medical cannabis,” said another. “Since my (opioid) dose has been cut in half, it does provide a bit of relief and helps me sleep a few hours.”

“My pharmacy ran out of oxycodone & hydrocodone. My pain doctor switched me over to hydromorphone and so far I've been able to get that filled. If I'm no longer able to get that, I'll have to consider medical marijuana,” wrote another pain patient.

About 10% of U.S. adults over age 50 reported using cannabis within the past year, a number that’s expected to rise when the federal government reschedules cannabis as a less dangerous drug. As more seniors experiment with cannabis, they’ll have to get used to the fact that it carries a stigma, just like opioids. And there’s a good chance their doctor will be evaluating them for signs of CUD.  

“Many older adults are turning to cannabis for help with increased pain syndromes—osteoarthritis, degenerative joint diseases, as well as insomnia,” Brooke Worster, MD, an associate professor and cannabis expert at Thomas Jefferson University, told Fortune.   

“The question really is, how do we recognize and avoid abuse or CUD, which is important and only now being recognized and discussed in the medical community more regularly.” 

The Tragic Connection Between Ehlers-Danlos and Arachnoiditis

By Pat Anson, PNN Editor

Before his retirement from clinical practice, Dr. Forest Tennant treated hundreds of patients suffering from intractable pain at his clinic in West Covina, CA. Many of those patients had adhesive arachnoiditis (AA), a chronic inflammatory condition that causes nerves in the spinal canal to form adhesions that “glue” them together.  

Over time, Dr. Tennant began to realize that many of his AA patients also had Ehlers-Danlos syndrome (EDS), a genetic disorder that weakens muscles, joints, skin and organs by disrupting the production of collagen. How could so many pain patients have both diseases?

In his latest book, "The Ehlers-Danlos / Arachnoiditis Connection," Dr. Tennant explains how someone with EDS can develop arachnoiditis after an invasive spinal procedure.

This interview with Dr. Tennant has been edited for content and clarity.

PNN: You were treating patients with arachnoiditis and discovered that many also had Ehlers-Danlos?

Tennant: That’s exactly what happened. I was treating intractable pain, which was my specialty, and adhesive arachnoiditis had become the number one reason for a referral to my clinic. And I found that at least half or more of them had EDS. These discoveries were a total surprise.

EDS and arachnoiditis are considered rare diseases, but seem to be increasing in the last couple of decades, both by actual disease incidence as well as the ability to diagnose cases that previously went undetected.

PNN: Are most doctors unfamiliar with these two disease?

Tennant: Absolutely. We actually heard yesterday about a doctor at a spine and pain center who had never heard of arachnoiditis. I don't know how this is possible. Medical practice has become so caught up and so compartmentalized that a very good institution or excellent physician can be totally left in the dark about something.

PNN: What is the connection between EDS and arachnoiditis?

Tennant: The primary relationship is collagen deficiencies. The cauda equina nerves and the arachnoid membrane that surrounds them in the spinal cord are very collagen laden. The number one reason why EDS patients develop intractable pain is not arachnoiditis, but small fiber neuropathy. EDS has its own autoimmune disease component.

What's been happening is that EDS patients often develop back problems due to the lack of collagen, and then they're operated on or have epidural injections. That doesn't cause it, but it accelerates the problem.

If you look at the number of surgeries, it’s just immense. There’s an incredible number of surgeries that have been done on people with a collagen deficiency disease. No wonder they've developed critical complications.

PNN: Are surgeons unaware that the patient has EDS?

Tennant: Totally unaware. One of the reasons I wrote this book is that anyone who has severe back pain that hasn't responded to standard therapy, such as chiropractic care, physical therapy or anti-inflammatory drugs, should be evaluated for both arachnoiditis and EDS. After 90 days, if you haven't recovered, you need to be evaluated for these diseases.

PNN: Can someone with EDS develop arachnoiditis without some triggering event or invasive procedure?

Tennant: It doesn't look like it, no. There's got to be some something to generate inflammation in the spinal cord. We've had no one who developed arachnoiditis who had not had spinal procedures. All of them had invasive procedures, whether it was epidural injections and/or surgery. In the book you can see the amazing number of interventions that they've had.

Adhesive arachnoiditis is a disease in which a whole lot of things have to go wrong. You don’t just stand on the street corner and catch this disease. A whole sequence of events has to occur. And they’re all bad.

One of my messages in the book is that children who are double jointed and who have hypermobility, these things have to be taken seriously. They can't just be ignored or seen as some kind of oddity. They may have a serious condition. Children need to be identified with EDS. And they need to be on a prevention program to stop the disease from progressing.

PNN: Is there any way to treat EDS?

Tennant: First of all, try not to cause further damage. A child with hypermobility, I mean the idea that they're going to be a gymnast or they're going play football, I hate to say it, but that’s going to cause more damage to their joints and aggravate the disease.

They also probably need to be on some kind of diet with collagen, a very healthy diet with protein and collagen. A lot of parents are starting to have their EDS child at least take a multivitamin once a day. Some are using collagen supplements and some are using low dosage hormones like colostrum.

My book is about prevention. AA can be prevented. And when the EDS person starts developing things like carpal tunnel syndrome or dysautonomia disease, these patients need to be aggressively treated and monitored for spinal canal problems and treated without invasive procedures, if at all possible.

Once you have the two diseases together, it’s catastrophic. You're probably going to have the worst pain imaginable. These people need aggressive pain treatment. I'm hoping that doctors will get the message that when someone has these two diseases, you don’t worry about the CDC opioid guidelines or anybody else's guidelines. You need maximum medical treatment for pain.

We've got people right now with these two diseases and some doctor is giving them a Butrans patch (buprenorphine) or Motrin for pain relief. These people have to be very aggressively treated. Otherwise, they're going to be bed-bound and die a miserable death. Suicides are very common.

Part of my goal here is to get doctors to recognize both diseases. These are the worst of the worst. I've never seen any cancer patients that were any worse than this.

PNN: If you have EDS and arachnoiditis, is that a hopeless situation? Can you have any quality of life?

Tennant: People with both diseases need palliative care and “Brompton cocktail” type medications. In our studies, about two-thirds of them can get some relief. But they were also on pretty aggressive treatment programs. You know, multiple opioids and benzodiazepines. So, it's not hopeless.

PNN: Thank you, Dr. Tennant.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain. Readers interested in learning more about his research should visit the Tennant Foundation’s website, Arachnoiditis Hope. You can subscribe to its research bulletins here.

To order "The Ehlers-Danlos / Arachnoiditis Connection" and other books of interest to the pain community, visit PNN’s Suggested Reading section.

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

‘We’re Flying Blind’: Response to Bird Flu Outbreak Mirrors Covid Errors

By Amy Maxmen, KFF Health News

It’s been nearly three months since the U.S. government announced an outbreak of the bird flu virus on dairy farms. The World Health Organization considers the virus a public health concern because of its potential to cause a pandemic, yet the U.S. has tested only about 45 people across the country.

“We’re flying blind,” said Jennifer Nuzzo, director of the Pandemic Center at the Brown University School of Public Health. With so few tests run, she said, it’s impossible to know how many farmworkers have been infected, or how serious the disease is. A lack of testing means the country might not notice if the virus begins to spread between people — the gateway to another pandemic.

“We’d like to be doing more testing. There’s no doubt about that,” said Nirav Shah, principal deputy director of the Centers for Disease Control and Prevention. The CDC’s bird flu test is the only one the Food and Drug Administration has authorized for use right now. Shah said the agency has distributed these tests to about 100 public health labs in states.

“We’ve got roughly a million available now,” he said, “and expect 1.2 million more in the next two months.”

But Nuzzo and other researchers are concerned because the CDC and public health labs aren’t generally where doctors order tests from. That job tends to be done by major clinical laboratories run by companies and universities, which lack authorization for bird flu testing.

As the outbreak grows — with at least 114 herds infected in 12 states as of June 18 — researchers said the CDC and FDA are not moving fast enough to remove barriers that block clinical labs from testing. In one case, the diagnostics company Neelyx Labs was on hold with a query for more than a month.

“Clinical labs are part of the nation’s public health system,” said Alex Greninger, assistant director of the University of Washington Medicine Clinical Virology Laboratory. “Pull us into the game. We’re stuck on the bench.”

The CDC recognized the need for clinical labs in a June 10 memo. It calls on industry to develop tests for the H5 strain of bird flu virus, the one circulating among dairy cattle.

“The limited availability and accessibility of diagnostic tests for Influenza A(H5) poses several pain points,” the CDC wrote. The points include a shortage of tests if demand spikes.

Testing Failures Made Pandemic Worse

Researchers, including former CDC director Tom Frieden and Anthony Fauci, who led the nation’s response to covid, cite testing failures as a key reason the U.S. fared so poorly with covid. Had covid tests been widely available in early 2020, they say, the U.S. could have detected many cases before they turned into outbreaks that prompted business shutdowns and cost lives.

In an article published this month, Nuzzo and a group of colleagues noted that the problem wasn’t testing capability but a failure to deploy that capability swiftly. The U.S. reported excess mortality eight times as high as other countries with advanced labs and other technological advantages.

A covid test vetted by the WHO was available by mid-January 2020. Rather than use it, the United States stuck to its own multistage process, which took several months. Namely, the CDC develops its own test then sends it to local public health labs. Eventually, the FDA authorizes tests from clinical diagnostic labs that serve hospital systems, which must then scale up their operations. That took time, and people died amid outbreaks at nursing homes and prisons, waiting on test results.

In contrast, South Korea immediately rolled out testing through private sector laboratories, allowing it to keep schools and businesses open. “They said, ‘Gear up, guys; we’re going to need a ton of tests,’” said Frieden, now president of the public health organization Resolve to Save Lives. “You need to get commercials in the game.” 

Nuzzo and her colleagues describe a step-by-step strategy for rolling out testing in health emergencies, in response to mistakes made obvious by covid. But in this bird flu outbreak, the U.S. is weeks behind that playbook.

Ample testing is critical for two reasons. First, people need to know if they’re infected so that they can be quickly treated, Nuzzo said. Over the past two decades, roughly half of about 900 people around the globe known to have gotten the bird flu died from it.

Although the three farmworkers diagnosed with the disease this year in the United States had only mild symptoms, like a runny nose and inflamed eyes, others may not be so lucky. The flu treatment Tamiflu works only when given soon after symptoms start.

The CDC and local health departments have tried to boost bird flu testing among farmworkers, asking them to be tested if they feel sick. Farmworker advocates list several reasons why their outreach efforts are failing. The outreach might not be in the languages the farmworkers speak, for example, or address such concerns as a loss of employment.

If people who live and work around farms simply see a doctor when they or their children fall ill, those cases could be missed if the doctors send samples to their usual clinical laboratories. The CDC has asked doctors to send samples from people with flu symptoms who have exposure to livestock or poultry to public health labs.

“If you work on a farm with an outbreak and you’re worried about your welfare, you can get tested,” Shah said.

But sending samples to public health departments requires knowledge, time, and effort.

“I really worry about a testing scheme in which busy clinicians need to figure this out,” Nuzzo said.

‘Get Prepared Before Things Get Crazy’

The other reason to involve clinical laboratories is so the nation can ramp up testing if the bird flu is suddenly detected among people who didn’t catch it from cattle. There’s no evidence the virus has started to spread among people, but that could change in coming months as it evolves.

The fastest way to get clinical labs involved, Greninger said, is to allow them to use a test the FDA has already authorized: the CDC’s bird flu test. On April 16 the CDC opened up that possibility by offering royalty-free licenses for components of its bird flu tests to accredited labs.

Several commercial labs asked for licenses. “We want to get prepared before things get crazy,” said Shyam Saladi, chief executive officer of the diagnostics company Neelyx Labs, which offered covid and mpox tests during shortages in those outbreaks. His experience over the past two months reveals the types of barriers that prevent labs from moving swiftly.

In email exchanges with the CDC, shared with KFF Health News, Saladi specifies the labs’ desire for licenses relevant to the CDC’s test, as well as a “right to reference” the CDC’s data in its application for FDA authorization.

That “right to reference” makes it easier for one company to use a test developed by another. It allows the new group to skip certain analyses conducted by the original maker, by telling the FDA to look at data in the original FDA application. This was commonplace with covid tests at the peak of the pandemic.

At first, the CDC appeared eager to cooperate. “A right of reference to the data should be available,” Jonathan Motley, a patent specialist at the CDC, wrote in an email to Saladi on April 24. Over the next few weeks, the CDC sent him information about transferring its licenses to the company, and about the test, which prompted Neelyx’s researchers to buy testing components and try out the CDC’s process on their equipment.

But Saladi grew increasingly anxious about the ability to reference the CDC’s data in the company’s FDA application. “Do you have an update with respect to the right of reference?” he asked the CDC on May 13. “If there are any potential sticking points with respect to this, would you mind letting us know please?”

He asked several more times in the following weeks, as the number of herds infected with the bird flu ticked upward and more cases among farmworkers were announced. “Given that it is May 24 and the outbreak has only expanded, can CDC provide a date by which it plans to respond?” Saladi wrote.

The CDC eventually signed a licensing agreement with Neelyx but informed Saladi that it would not, in fact, provide the reference. Without that, Saladi said, he could not move forward with the CDC’s test — at least not without more material from the agency. “It’s really frustrating,” he said. “We thought they really intended to support the development of these tests in case they are needed.”

Shah, from the CDC, said test manufacturers should generate their own data to prove that they’re using the CDC’s test correctly. “We don’t have a shortage such that we need to cut corners,” he said. “Quality reigns supreme.”

The CDC has given seven companies, including Neelyx, licenses for its tests — although none have been cleared to use them by the FDA. Only one of those companies asked for the right of reference, Shah said. The labs may be assisted by additional material that the agency is developing now, to allow them to complete the analyses — even without the reference.

“This should have happened sooner,” Saladi told KFF Health News when he was told about the CDC’s pending additional material. “There’s been no communication about this.”

Greninger said the delays and confusion are reminiscent of the early months of covid, when federal agencies prioritized caution over speed. Test accuracy is important, he said, but excessive vetting can cause harm in a fast-moving outbreak like this one. “The CDC should be trying to open this up to labs with national reach and a good reputation,” he said. “I fall on the side of allowing labs to get ready — that’s a no-brainer.”

Clinical laboratories have also begun to develop their own tests from scratch. But researchers said they’re moving cautiously because of a recent FDA rule that gives the agency more oversight of lab-developed tests, lengthening the pathway to approval. In an email to KFF Health News, FDA press officer Janell Goodwin said the rule’s enforcement will occur gradually.

However, Susan Van Meter, president of the American Clinical Laboratory Association, a trade group whose members include the nation’s largest commercial diagnostic labs, said companies need more clarity: “It’s slowing things down because it’s adding to the confusion about what is allowable.”

Creating tests for the bird flu is already a risky bet, because demand is uncertain. It’s not clear whether this outbreak in cattle will trigger an epidemic or fizzle out. In addition to issues with the CDC and FDA, clinical laboratories are trying to figure out whether health insurers or the government will pay for bird flu tests.

These wrinkles will be smoothed eventually. Until then, the vanishingly slim numbers of people tested, along with the lack of testing in cattle, may draw criticism from other parts of the world.

“Think about our judgment of China’s transparency at the start of covid,” Nuzzo said. “The current situation undermines America’s standing in the world.”

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

The Best Remedy for Low Back Pain? Go for a Walk

By Pat Anson, PNN Editor

Almost everyone experiences low back pain at some point in their lives. Repeated episodes of acute low back pain are also very common, with 70% of people who recover from one episode having another one within a year.

Is there any reliable way to end the cycle before low back pain turns chronic?

A new Australian study suggests the best and most cost-effective way to keep low back pain from returning is simple: Go for a walk.

Researchers at Macquarie University’s Spinal Pain Research Group enrolled 701 adults who recently recovered from low back pain in a clinical trial. Half were randomly assigned to an individualized walking and education program led by a physiotherapist for six months; while the other half served as a control group, receiving no treatment at all.

Participants in the walking group were encouraged to walk five times a week for at least 30 minutes, but were free to do more or less. Most gradually increased their walking, with the average amount of walking time doubling in the first 3 months.

Both groups were then followed for at least one year, with researchers tracking any recurrences of low back pain lasting at least 24 hours that were severe enough to limit daily activities.

The study findings, recently published in The Lancet, show that participants in the control group had a recurrence of low back pain after 112 days on average, while those in the walking group were pain free nearly twice as long, a median of 208 days. The overall risk of having a new episode of low back pain fell by 28% for the walkers.

“We don’t know exactly why walking is so good for preventing back pain, but it is likely to include the combination of the gentle oscillatory movements, loading and strengthening the spinal structures and muscles, relaxation and stress relief, and release of ‘feel-good’ endorphins,” said senior author Mark Hancock, PhD, a Professor of Physiotherapy at Macquarie University.

"And of course, we also know that walking comes with many other health benefits, including cardiovascular health, bone density, healthy weight, and improved mental health.”

Another benefit is cost. A significantly higher percentages of participants in the control group sought treatment from massage therapists, chiropractors, physiotherapists and other healthcare providers.

While it’s hard to assign a dollar number to quality of life, researchers estimate the total cost-effectiveness of walking vs. no treatment at AU$7,802. In U.S. dollars, that’s $5,190.    

“It not only improved people’s quality of life, but it reduced their need both to seek healthcare support and the amount of time taken off work by approximately half,” said lead author Natasha Pocovi, PhD, a Postdoctoral Fellow at Macquarie University.

In 2023, the World Health Organization (WHO) released its first guideline for managing low back pain, recommending treatments such as exercise, physical therapy, and patient education. Pocovi and her colleagues say a regular program of walking would be a cheaper alternative to joining a gym or hiring a trainer.

“The exercise-based interventions to prevent back pain that have been explored previously are typically group-based and need close clinical supervision and expensive equipment, so they are much less accessible to the majority of patients,” Pocovi said. “Our study has shown that this effective and accessible means of exercise has the potential to be successfully implemented at a much larger scale than other forms of exercise.”

Low back pain is the leading cause of disability worldwide. According to a 2022 Harris Poll, nearly 3 out of 10 U.S. adults live with chronic low back pain. On average, the typical back pain sufferer seeks relief from at least three healthcare providers, with many treatments proving ineffective.   

How Stress, Burnout and Labor Shortages Affect Anesthesia Care

By Pat Anson, PNN Editor

Growing demand for surgical procedures to treat chronic pain and other medical conditions is contributing to shortages of anesthesia care providers, according to an op/ed in Anesthesiology, the journal of the American Society of Anesthesiologists.

"The labor supply-demand imbalance for anesthesia clinicians has reached critical levels, with major implications for safe and effective patient care," says lead author Amr Abouleish, MD, an anesthesiologist and professor at the University of Texas Medical Branch, Galveston.

Many outpatient and elective surgical procedures that were postponed during the Covid-19 pandemic have been rescheduled, leading to a surge in demand that has exacerbated shortages of anesthesia staff. Before the pandemic, about 35% of hospitals and surgical centers reported an anesthesia staffing shortage. Two years after the pandemic, the staffing shortage doubled to 78%.

“But these shortages aren't unique to just anesthesia,” Abouleish told PNN. “We're short nurses, technicians, pharmacists, even aides. And we see that in all our facilities now nationwide.”

Tired of the stress, burnout and workload demands, some providers left healthcare to pursue other professions or retired early. That has contributed to a “dangerous spiral” that has compromised healthcare access and the quality of care. Instead of using general or full anesthesia in an operating room, many outpatient procedures are now performed using partial anesthesia or a local anesthetic, which are cheaper and require less staff.

Abouleish, who specializes in pediatric care, says the staffing shortages haven’t affected patient safety in his practice. But he often finds himself working with someone on a surgery team for the first time.

“The first time we meet the nurse anesthetists is literally the day I’m working with them,” he explained. “When I work with somebody I've worked with for 10 years, we have a rapport. We've developed trust and we understand each other's limits. And that's clearly more effective, better for the team, and better for patients. As long as there is a constant change in staff, I think that's worrisome for patient safety. The surgeons will tell you the same thing.”

Abouleish says the opioid crisis has led to a more multimodal approach to treating chronic pain, which has resulted in more fusions, nerve blocks, spinal injections and other procedures that require some level of anesthesia.

“It's gone from what I saw maybe 10 years ago, before the opioid crisis, where you had physicians or clinics where the only pain management was to hand out opioids. Now it's a multimodal, multidisciplinary approach,” he said.

“There are some patients who do well with a low dose opioid, there's no question about that. But it's also important to have that multi-disciplinary approach to chronic pain. The goal oftentimes is not to take the pain away, it's just to make your everyday life more livable.”

The Center for Anesthesia Workforce Studies estimates that nearly 4,800 anesthesia professionals in the U.S. left the workforce in 2022. The following year, about 5,200 anesthesia professionals entered the workforce from training programs. Although the anesthesia workforce is growing, it’s not growing fast enough to keep pace with demand or attrition. About 57% of anesthesiologists are 55 or older and nearing retirement.

To ease workforce shortages, Abouleish and his co-authors say the number of anesthesiologist residency positions should be increased. Steps should also be taken to improve staff retention by addressing burnout and other workplace issues through more flexible scheduling and part-time work. They also say Medicare payments for anesthesiology services need to increase to keep pace with inflation and higher healthcare costs. 

Medical Research Often Ignores Older Women

By Judith Graham, KFF Health News

Medical research has shortchanged women for decades. This is particularly true of older women, leaving physicians without critically important information about how to best manage their health.

Late last year, the Biden administration promised to address this problem with a new effort called the White House Initiative on Women’s Health Research. That inspires a compelling question: What priorities should be on the initiative’s list when it comes to older women?

Stephanie Faubion, director of the Mayo Clinic’s Center for Women’s Health, launched into a critique when I asked about the current state of research on older women’s health. “It’s completely inadequate,” she told me.

One example: Many drugs widely prescribed to older adults, including statins for high cholesterol, were studied mostly in men, with results extrapolated to women.

“It’s assumed that women’s biology doesn’t matter and that women who are premenopausal and those who are postmenopausal respond similarly,” Faubion said.

“This has got to stop: The FDA has to require that clinical trial data be reported by sex and age for us to tell if drugs work the same, better, or not as well in women,” Faubion insisted.

Consider the Alzheimer’s drug Leqembi, approved by the FDA last year after the manufacturer reported a 27% slower rate of cognitive decline in people who took the medication. A supplementary appendix to a Leqembi study published in the New England Journal of Medicine revealed that sex differences were substantial — a 12% slowdown for women, compared with a 43% slowdown for men — raising questions about the drug’s effectiveness for women.

This is especially important because nearly two-thirds of older adults with Alzheimer’s disease are women. Older women are also more likely than older men to have multiple medical conditions, disabilities, difficulties with daily activities, autoimmune illness, depression and anxiety, uncontrolled high blood pressure, and osteoarthritis, among other issues, according to scores of research studies.

Even so, women are resilient and outlive men by more than five years in the U.S. As people move into their 70s and 80s, women outnumber men by significant margins. If we’re concerned about the health of the older population, we need to be concerned about the health of older women.

As for research priorities, here’s some of what physicians and medical researchers suggested:

Heart Disease

Why is it that women with heart disease, which becomes far more common after menopause and kills more women than any other condition — are given less recommended care than men?

“We’re notably less aggressive in treating women,” said Martha Gulati, director of preventive cardiology and associate director of the Barbra Streisand Women’s Heart Center at Cedars-Sinai, a health system in Los Angeles. “We delay evaluations for chest pain. We don’t give blood thinners at the same rate. We don’t do procedures like aortic valve replacements as often. We’re not adequately addressing hypertension.

“We need to figure out why these biases in care exist and how to remove them.”

Gulati also noted that older women are less likely than their male peers to have obstructive coronary artery disease — blockages in large blood vessels —and more likely to have damage to smaller blood vessels that remains undetected. When they get procedures such as cardiac catheterizations, women have more bleeding and complications.

What are the best treatments for older women given these issues? “We have very limited data. This needs to be a focus,” Gulati said.

Brain Health

How can women reduce their risk of cognitive decline and dementia as they age?

“This is an area where we really need to have clear messages for women and effective interventions that are feasible and accessible,” said JoAnn Manson, chief of the Division of Preventive Medicine at Brigham and Women’s Hospital in Boston and a key researcher for the Women’s Health Initiative, the largest study of women’s health in the U.S.

Numerous factors affect women’s brain health, including stress — dealing with sexism, caregiving responsibilities, and financial strain — which can fuel inflammation. Women experience the loss of estrogen, a hormone important to brain health, with menopause. They also have a higher incidence of conditions with serious impacts on the brain, such as multiple sclerosis and stroke.

“Alzheimer’s disease doesn’t just start at the age of 75 or 80,” said Gillian Einstein, the Wilfred and Joyce Posluns Chair in Women’s Brain Health and Aging at the University of Toronto. “Let’s take a life course approach and try to understand how what happens earlier in women’s lives predisposes them to Alzheimer’s.”

Mental Health

What accounts for older women’s greater vulnerability to anxiety and depression?

Studies suggest a variety of factors, including hormonal changes and the cumulative impact of stress. In the journal Nature Aging, Paula Rochon, a professor of geriatrics at the University of Toronto, also faulted “gendered ageism,” an unfortunate combination of ageism and sexism, which renders older women “largely invisible,” in an interview in Nature Aging.

Helen Lavretsky, a professor of psychiatry at UCLA and past president of the American Association for Geriatric Psychiatry, suggests several topics that need further investigation:

• How does the menopausal transition impact mood and stress-related disorders?

• What nonpharmaceutical interventions (yoga, meditation, tai chi, etc.) can help older women recover from stress and trauma?

• What combination of interventions is likely to be most effective?

Cancer

How can cancer screening recommendations and cancer treatments for older women be improved?

Supriya Gupta Mohile, director of the Geriatric Oncology Research Group at the Wilmot Cancer Institute at the University of Rochester, wants better guidance about breast cancer screening for older women, broken down by health status. Currently, women 75 and older are lumped together even though some are remarkably healthy and others notably frail.

Recently, the U. S. Preventive Services Task Force noted “the current evidence is insufficient to assess the balance of benefits and harms of screening mammography in women 75 years or older,” leaving physicians without clear guidance.

“Right now, I think we’re underscreening fit older women and over screening frail older women,” Mohile said.

The doctor also wants more research about effective and safe treatments for lung cancer in older women, many of whom have multiple medical conditions and functional impairments. The age-sensitive condition kills more women than breast cancer.

“For this population, it’s decisions about who can tolerate treatment based on health status and whether there are sex differences in tolerability for older men and women that need investigation,” Mohile said.

Bone Health, Functional Health and Frailty

How can older women maintain mobility and preserve their ability to take care of themselves?

Osteoporosis, which causes bones to weaken and become brittle, is more common in older women than in older men, increasing the risk of dangerous fractures and falls. Once again, the loss of estrogen with menopause is implicated.

“This is hugely important to older women’s quality of life and longevity, but it’s an overlooked area that is understudied,” said Manson of Brigham and Women’s.

Jane Cauley, a distinguished professor at the University of Pittsburgh School of Public Health who studies bone health, would like to see more data about osteoporosis among older Black, Asian, and Hispanic women, who are undertreated for the condition. She would also like to see better drugs with fewer side effects.

Marcia Stefanick, a professor of medicine at Stanford University School of Medicine, wants to know which strategies are most likely to motivate older women to be physically active. And she’d like more studies investigating how older women can best preserve muscle mass, strength, and the ability to care for themselves.

“Frailty is one of the biggest problems for older women, and learning what can be done to prevent that is essential,” she said.

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

Migraine Drug May Prevent Headaches in Hot Weather

By Pat Anson, PNN Editor

With a dangerous heat wave expected this week in the Midwest and Northeast, the National Weather Service has issued “heat alerts” from Iowa to Maine through Friday. Temperatures are expected to reach the mid to upper 90’s, although it will feel hotter due to high humidity in some areas.

Health experts are giving the usual precautions about heat safety, such as staying hydrated and avoiding strenuous outdoor activity, but migraine sufferers may just want to stay inside in a cool, dark place. While there are no clear links between hot weather and migraine, the American Migraine Foundation says that seasonal changes in weather can trigger a migraine attack.

There are currently no FDA-approved treatments for the prevention of weather-related migraines, but according to a preliminary study, one of the new migraine drugs that block proteins known as CGRPs (calcitonin gene-related peptides) may help prevent headaches in hot weather.

A team of researchers analyzed over 71,000 daily diary records of 660 patients with episodic migraine, comparing them with local weather data on the same days. They found that for every temperature increase of 10 degrees Fahrenheit, there was a 6% increased risk of a headache.

“What we found was that increases in temperature were a significant factor in migraine occurrence across all regions of the United States,” says lead author Vincent Martin, MD, director of the Headache and Facial Pain Center at the University of Cincinnati. “It’s pretty amazing because you think of all the varying weather patterns that occur across the entire country, that we’re able to find one that is so significant.”

When researchers took a closer look at migraine patients being treated with fremanezumab, which is sold under the brand name Ajovy, the association between hot weather and headaches completely disappeared.

Ajovy is an injectable migraine prevention drug made by Teva Pharmaceuticals, which funded the study. Teva also paid consulting fees to Martin, who is president of the National Headache Foundation.

“This study is the first to suggest that migraine specific therapies that block CGRP may treat weather associated headaches,” says co-author Fred Cohen, an assistant professor of medicine at Icahn School of Medicine in New York City.

Findings from the study were recently presented at the American Headache Society’s annual meeting in San Diego, California. If the findings are confirmed in future studies, Ajovy and other CGRP inhibitors have the potential to help migraineurs who suffer from weather-related triggers.

The medications are not cheap. The listed cost for Ajovy is $640 for one monthly dose, although out of pocket costs will vary depending on insurance.