Pain Is Not a Competition

By Mia Maysack, PNN Columnist

A question I've often encountered is, “Why make pain political?”

Here's a newsflash for everyone:  It was created that way. And not initially by us, I might add.  

Despite having lived with chronic head pain every single day for over 20 years, I’m still fighting for a proper diagnosis. The more tests, appointments, examinations and permission slips I get only feeds into the perpetual cycle of phone tag, hold music and Zoom links. Not to mention pandemic induced anxiety.

It's all done in the name of “patient centeredness,” but I find it all confining and traumatizing.     

This has led to me visiting with healthcare providers very minimally. I’m grateful to be able to slowly but surely distance myself, but I’m also aware that many won’t ever have that option or luxury. I have always been conscious of my privilege, almost dying while minding my own business as a 10-year old has a tendency to humble a person. That’s part of what fuels my fire to fight not only my own battles, but for the sake of others in the form of activism.

Common misconceptions are that a person must be able-bodied in order to participate in their own advocacy or that we are permitted only to advocate for a specific cause, such as limiting ourselves to whatever pain condition or treatment we identify with.

But if we expect people to care about what we’re going through, wouldn’t inclusiveness for other causes be a demonstration of mutual respect and support?  That is lacking in the pain community and beyond.  

For example, I’m severely allergic to most medications, specifically the “good stuff” for pain relief. But that hasn’t stopped me from being involved in efforts pertaining to the opioid crisis and healthcare access in general.

I was once invited to speak at a patient protest where I would have otherwise remained silent. Other patients who were there understandably did not want to be judged, ridiculed, exiled or singled out for speaking up about opioid medication, so I stepped up and shared my own story. For that, I was shamed afterwards, due to the fact I am not physically tolerant of pills!

If that ain’t political, I don’t know what is.                

It has been my experience that there’s tremendous difficulty in acknowledging someone else’s perception as being equally real and valuable as one’s own. This leads to a self-defense mechanism, cultivating a sense of validation that can come across as belittling what others have gone through. No one really knows what it is like to live a day in someone else's shoes

I don’t participate in groups fixated on ONE type of ailment. Discomfort of all kinds should be invited and welcomed because hurt does not discriminate and misery can’t be measured. Pain is not a competition. 

I have felt the need to step away from people who are not supportive. Instead of working to strengthen the inner bond that unites us, many would rather convey how much worse they have it than everybody else, instead of listening and learning from others.  

We're in the thick of it as a collective right now. It is necessary for the sake of our lives to inch closer toward a willingness to grow and project hope, especially when it feels like there is none.  That's how we can save ourselves and one another.   

Focusing on what separates us as opposed to how we're able to relate as humans is overly prevalent throughout the pain community and beyond. Suffering is playing out on a global scale and is much bigger than any of us. We’ll never drive true change in healthcare if we dismantle each other instead of the systems we’re fighting against.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

Only 2% of British Columbia Overdoses Linked to Prescription Opioids

By Pat Anson, PNN Editor

A new analysis of fatal opioid overdoses in British Columbia found that only about 2% of the deaths were caused by prescription opioids alone. The other overdoses mainly involved illicit fentanyl and other street drugs or a combination of illicit drugs and other medications, which were often not prescribed.

“Our data show a high prevalence of nonprescribed fentanyl and stimulants, and a low prevalence of prescribed opioids detected on toxicology in people who died from illicit drug overdose. These results suggest that strategies to address the current overdose crisis in Canada must do much more than target deprescribing of opioids,” researchers reported in the Canadian Medical Association Journal (CMAJ).

Vancouver, British Columbia was the first major North American city to be hit by a wave of overdoses involving illicit fentanyl, a potent synthetic opioid. A public health emergency was declared in BC in 2016 and strict guidelines were released to limit opioid prescribing. Although prescriptions dropped dramatically, fatal overdoses in BC continued to rise.

Researchers looked at 1,789 fatal overdoses in BC from 2015 to 2017 for which toxicology reports were available and found that 85% of them involved an opioid. Of those, only 2.4% of the deaths were linked to opioid medication alone. Another 7.8% of cases involved a combination of prescribed or non-prescribed opioids.

The findings are similar to a 2019 study of opioid overdoses in Massachusetts, which found that only 1.3% of the people who died had an active prescription for opioid medication.   

“Pain patients and their medications have never been responsible for overdose deaths – not then or now. Will the anti-opiate zealots, with all their data-dredged studies be taken to task for all the unnecessary suffering, disability, and premature deaths they have contributed to within the Canadian pain population?” asked Barry Ulmer, Executive Director of the Chronic Pain Association of Canada, a patient advocacy group.

“The ‘prohibition’ approach that has wrongly been applied for years that focused on reducing access to pharmaceutical products directly contributed to exposure to higher risk illicit substances, which put people at risk of overdose.”

Most Overdoses Linked to Illicit Fentanyl

Researchers say efforts to reduce opioid prescribing in Canada were “insufficient to address the current overdose crisis” because street drugs are involved in the vast majority of deaths. They also warned against the forced tapering of patients on opioid pain medication.

“The risk of harms from these medications must be balanced with the potential harms of nonconsensual discontinuation of opioids for long-term users, including increased pain, risk of suicide and risk of transition to the toxic illicit drug supply,” wrote lead author Alexis Crabtree, MD, resident physician in Public Health at the University of British Columbia.  

Crabtree and her colleagues found that most overdoses involved a street drug, with fentanyl or fentanyl analogues linked to nearly 8 out of 10 overdose deaths. Many of the deaths involved multiple substances, including medications such as stimulants, anti-depressants, benzodiazepines, antipsychotics and gabapentinoids, which were often not prescribed to the victim.   

Over 7% of the overdoses involved methadone or buprenorphine (Suboxone), opioids that are used to treat addiction. About a third of the people who died had a diagnosis of substance use disorder in the year before their overdose.

In a commentary also published in CMAJ, a leading public health expert said it was time to decriminalize drugs and offer a “safe supply” to illicit drug users.

“Unless there is a radical change in our approach to the epidemic, overdose deaths will continue unabated. It is time to scale up safe supply and decriminalize drug use.”

— Dr. Mark Tyndall

“Unless there is a radical change in our approach to the epidemic, overdose deaths will continue unabated. It is time to scale up safe supply and decriminalize drug use,” wrote Mark Tyndall, MD, Executive Director of BC Centre for Disease Control and a professor at the School of Population and Public Health, University of British Columbia.

Tyndall says blaming the opioid crisis on excess prescribing by doctors and the unethical marketing of opioids by pharmaceutical companies fails to address the reasons people abuse drugs in the first place.

“While having a cheap and ready supply of opioid drugs does allow for misuse and addiction, this narrative fails to acknowledge that drug use is largely demand-driven by people seeking to self-medicate to deal with trauma, physical pain, emotional pain, isolation, mental illness and a range of other personal challenges and these are the people overdosing,” Tyndall wrote.

(Update: Canada’s Chief Public Health Officer, Dr. Theresa Tam, issued a statement August 26 saying the COVID-19 pandemic is contributing to an increase in drug overdoses and deaths across Canada.

“There are indications that the street drug supply is growing more unpredictable and toxic in some parts of the country, as previous supply chains have been disrupted by travel restrictions and border measures. Public health measures designed to reduce the impact of COVID-19 may increase isolation, stress and anxiety as well as put a strain on the supports for persons who use drugs,” Tam said.

“For the third consecutive month this year, the number of drug overdose deaths recorded in British Columbia has exceeded 170. These deaths represent a 136% increase over the number of deaths recorded in July 2019. There are news reports of an increase in overdoses in other communities across the country.” )

Therapy Dogs Give Relief to Fibromyalgia Patients

By Pat Anson, PNN Editor

It’s well-known that having a pet or support animal can provide significant psychological benefits to people suffering from stress, anxiety or loneliness. A new study at the Mayo Clinic suggests that pet therapy can also help people with fibromyalgia.

To gain a better understanding of the physiological and emotional benefits of pet therapy, researchers monitored the hormones, heart rate, temperature and pain levels of 221 patients enrolled in the Mayo Clinic Fibromyalgia Treatment Program. Half of the participants spent 20 minutes interacting with a therapy dog and its handler, while the other half served as a control group, spending the same amount of time with the handler only.

The research findings, recently published in Mayo Clinic Proceedings, are striking. People who interacted with a therapy dog had a statistically significant increase in levels of salivary oxytocin – a hormone released by the pituitary gland that is known as the “cuddle hormone” or “love hormone.”

They were also more relaxed, their heart rates decreased, and they reported more positive feelings and fewer negative ones compared to the control group. Over 80% agreed or strongly agreed that animal therapy was helpful to them.  

Pain levels declined in both groups, but there was a larger decrease in those who interacted with the therapy dogs. On average, severe pain scores in that group dropped to more moderate levels.

“Given that individuals with FM (fibromyalgia) suffer pain chronically, this reduction, even if numerically minimal, could help to provide symptomatic relief and quality of life improvement,” researchers concluded. “Overall, the study showed that a 20-minute human-animal interaction (treatment group) as well as a human-human interaction (control group) could improve the emotional and physiological state of patients with FM; however, those who interacted with a therapy dog showed a more robust improvement.”

Fibromyalgia is a poorly understood disorder characterized by widespread body pain, fatigue, poor sleep, anxiety and depression. Its cause is unknown and many treatments prove ineffective. 

Therapy Dogs Calmer

The Mayo Clinic study was unique in another way – because researchers monitored and collected saliva from the dogs to see how they responded to the therapy sessions. Although therapy dogs are used in a wide variety of clinical settings, little is known about the impact of therapy sessions on the emotional state of the dogs.

Researchers say the 19 dogs involved in the fibromyalgia study -- all members of the Mayo Clinic Caring Canines program – did not show signs of stress, appeared to be more relaxed, and had significantly lower heart rates at the end of the sessions, a sign that they enjoyed interacting with patients.

"We need to expand our understanding of how animal-assisted activity impacts therapy dog's well-being, and this sizeable study with 19 dogs of various breeds provided solid evidence that animal-assisted activity done in the right condition does not have negative impacts on well-trained therapy dogs," said François Martin, PhD, a researcher for Purina, which sponsored the study.

"This only encourages us to do more research to continue to demonstrate the power of the human-animal bond on people while ensuring assistance animals also experience positive wellness as a result of their work."

You don’t need a trained therapy dog to enjoy the benefits of having a pet. A recent survey of older adults found that dogs, cats and other pets help their owners enjoy life, reduce stress, keep them physically active, and take their minds off pain.

Developing a Covid-19 Vaccine Requires Patience

By Dr. Lynn Webster, PNN Columnist

There is a worldwide race to find a vaccine for the coronavirus. This is a good thing. We all want a vaccine. Everyone is eager to get back to a "new normal" — whatever that will mean — but it's unlikely to happen until we have an effective and safe COVID-19 vaccine.

The pandemic has already cost us more than 700,000 deaths around the world. The sooner we are able to manufacture and distribute a trustworthy vaccine, the better. The company and country that develop an effective vaccine first will likely be credited with saving hundreds of thousands of lives. The company that wins the race may benefit financially. Prestige and power are also at stake.

Researchers who were already working on vaccines for other coronaviruses, such as SARS and MERS, when the pandemic hit have an advantage. Several companies claim to be on the brink of developing a vaccine. Moderna, Pfizer and AstraZeneca are among the pharmaceutical leaders that have fast-tracked the testing process and claim to be almost ready with a vaccine.

However, rushing a vaccine to market could be dangerous. It typically requires many years to develop a new vaccine because it can take weeks for antibodies to emerge -- and even longer for negative side effects to develop. It may take several months to a year for some adverse effects to emerge, so studies require long-term follow-up to track thousands of vaccinated patients.

Many things can go wrong. The Cutter incident in 1955 was a tragic example of this. America's first polio vaccine caused 400,000 cases of polio, paralyzing 200 children and killing 10. The mass effort to immunize children against polio had to be suspended, and laws were put in place to ensure federal regulation of future vaccines.

There have been other vaccine-related fiascos, too. They should teach us all to be cautious and exercise patience with the development of new inoculations — even one as urgently needed as a COVID-19 vaccine.

Russia’s Vaccine 

On August 11, President Vladimir Putin announced that Russia has developed a COVID-19 vaccine. He even claimed that one of his daughters had been vaccinated. However, reports state the vaccine has not been tested beyond some of Russia's elite and military personnel. Results have not been published, and the vaccine has yet to be certified as either effective or safe. 

Last year, more than 800 scientific publications by Russian scientists had to be withdrawn because they contained plagiarized and fraudulent data. This does not bode well for the veracity of Russia's current claims of a vaccine discovery. 

Developing an effective vaccine will take time. However, we should allow as much time as it requires to ensure the vaccine's safety. We cannot cut corners, or people will be harmed. We also need to trust the source of the reported progress. It makes sense to be cautious about accepting anything Russian scientists or its leadership purport to have accomplished. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD

My Name Is Fibromyalgia

By Cathy Kean, Guest Columnist

I am an unwelcome, uninvited, germinating presence that has come to invade your peaceful existence. You will never be the same. I will fill you with misery and take over every aspect of your life. My name is fibromyalgia.

When I am feeling especially mischievous, I will cause you aches and extreme pain. I will rob you of your strength, energy and cognition. You will try to formulate a complete sentence, but only to be able to grasp a few basic words. This is called fibro fog.

I will make it difficult for you to concentrate on anything and your memory will suffer drastically! You will be told constantly by others, “Don’t you remember I told you?” They’ll be thinking you are intentionally trying to get out of something.

I see your frustration and I see your sorrow. Once you were an outgoing, social and engaging individual. Now you are pretty much a recluse. See? I am good at what I do.

You think you can get rid of me by going from doctor to doctor? Silly one, you have been to 8 doctors already and they all discount you by saying, “There is nothing wrong. It’s all in your head.”

Wreaking havoc is what I do best. I will rob you of sleep and much more. I’ll make your body temperature go crazy hot when it’s cold, and cold when it’s hot. You will never feel comfortable again.

I’ll give you digestive issues, anxiety and depression. You will experience lack of control, grief, worry, immune dysfunction, chest pain, panic attacks, inflammation, insomnia and memory loss. Your body will be overly sensitive to pretty much everything, thanks to me!

I will introduce a new sensation into your existence called “noxious stimuli.” It could be a bad smell, bright light, noise, anything. Because your body is now overly sensitive, it will react strongly to just about anything. The lights will be too bright when they’re just fine for everyone else. The same goes for visual chaos, heat, cold and pressure on your skin.

Your nerves will overreact to the things around you and your brain will get overloaded when it gets these signals that intensify your pain.

I will attack you when you least expect it. You will have no way of knowing when, because I am always present, always lurking around! This will hurt your family, your career, your outlook and your sense of self. I will follow you everywhere, never a reprieve!

When I am angry, your days will be hell and your nights sleepless. I’ll be behind you, beside you, everywhere, every day. To the point where you will not remember a time when you lived outside of my grasp.

Imagine feeling like you were burning from the inside out. The stress will be huge and will exacerbate all your other conditions! Your bones will feel like someone is using a jackhammer on them, especially during a change of weather.

Emotionally, I will make it so anything, even something little, will stress and worry you, which will make your body rebel and symptoms flare up just for the fun of it. Your nerves will create phantom itches that will make you scratch yourself raw. The simplest tasks will take you 10 times longer and five times as much energy to finish.

Because I am an invisible illness, others will not be able to see your pain, suffering and degree of sickness. You will hear comments such as:

• “But you don’t look sick.”

• “Must be nice to sit in bed all day.”

• “Your pain can’t be that bad.”

• “If you ate better, you’d feel better.”

You will be called lazy, a liar, faker, fabricator and more.

Because I make you hurt so much, you will need pain relief. The most effective and efficient medication for your symptoms will be prescription opiates. But they have been stigmatized and demonized by doctors, family, government and more. You will be called a drug seeker, an addict, and a druggie. So many hurtful, demeaning labels will be placed upon you which will hurt, damage and wound your soul.

Why? You didn’t ask for this!

It’s because of ignorance! The media has inundated the public by selling them a sensationalized, false and inaccurate narrative about opioids to sell papers and get ratings. Judgmental people who jump to conclusions without researching the true answers.

Shame on them for their cruelty. They make my job so easy, which is to inflict pain, suffering and mayhem.

So here I am, fibromyalgia, your new friend. I am always looking for others to invade and conquer. Unless you’ve walked in the shoes of others who are afflicted, you will never know the depth of their struggles.

Cathy Kean lives in California. She is a grandmother of 7 and mother of 4. Cathy has lived with intractable pain for 14 years from a botched surgery, along with fibromyalgia, arachnoiditis, stiff person syndrome, lupus, Parkinson's disease and insomnia. Cathy is the creator and administrator of the Facebook pages Chronic Illness Awareness and Advocacy Coalition and Pain is Pain.

New Hampshire Law Protects Patient Access to Rx Opioids

By Pat Anson PNN Editor

Patient advocates around the country are looking with keen interest at a new law in New Hampshire that stipulates chronic pain patients should have access to opioid medication if it improves their physical function and quality of life.

HB 1639 was signed into law by Gov. Chris Sununu late last month. It amends state law to add some key provisions that protect the rights of both pain patients and their doctors.

Under the law, physicians and pharmacists are required to consider the “individualized needs” of pain patients, treat them with dignity, and ensure that they are “not unduly denied the medications needed to treat their conditions."   

Since the CDC’s controversial opioid prescribing guideline was released in 2016, dozens of states have adopted laws and policies that restrict the prescribing of opioids to the CDC’s recommended daily limit of 90 MME (Morphine Milligram Equivalent). Doctors who exceed that dose often come under the scrutiny of law enforcement and some pharmacists have stopped filling their prescriptions. As a result, millions of patients have been tapered to lower doses or cut off from opioids altogether, causing withdrawal, poorly treated pain and increased disability.  

Under the New Hampshire law, “all decisions” regarding treatment are to be made by the treating practitioner, who is required to treat chronic pain “without fear of reprimand or discipline.” Doctors in the state are also allowed to exceed the MME limit, provided the dose is “the lowest amount necessary to control pain” and there are no signs of a patient abusing their opioid medication.

“Ordering, prescribing, dispensing, administering, or paying for controlled substances, including opioid analgesics, shall not in any way be pre-determined by specific Morphine Milligram Equivalent (MME) guidelines.

For those patients who experience chronic illness or injury and resulting chronic pain who are on a managed and monitored regimen of opioid analgesic treatment and have increased functionality and quality of life as a result of said treatment, treatment shall be continued if there remains no indication of misuse or diversion.”

Importantly, the new law broadly defines chronic pain to include any pain that is intractable, high impact, episodic or relapsing — meaning the pain doesn’t have to be continuous.

“This innovative new law is historic in that it states that controlled substances, including opioids, can't be pre-determined by specific morphine milligram equivalents,” says Dr. Forest Tennant, a retired pain management specialist in California. “The law specifically states that patients can't be unduly denied the medications needed to treat their conditions. This point can't be over-emphasized.”

Another provision of the law requires that a diagnosis of chronic pain made by a physician anywhere in the U.S. that is supported by written documentation should be considered adequate proof that a patient has chronic pain. That part of the law is intended to make it easier for out-of-state pain patients to get treatment in New Hampshire.      

The law is the result of two years of lobbying by a small group of patient advocates known as the New Hampshire Pain Collaborative, which worked closely with state Sens. John Reagan and Tom Sherman in drafting the legislation. Key provisions eventually became part of the healthcare omnibus bill that won bipartisan support in the New Hampshire Senate and House of Representatives, and was signed into law by Governor Sununu.

Bill Murphy, a member of the Pain Collaborative, made this video to help other patients and advocates create similar legislation in their states:

“I would like to say a big congrats to all who worked on that project! Isn't it amazing what you can accomplish when you all work together?” said Donna Corley, director of the Arachnoiditis Society for Awareness and Prevention (ASAP), a patient advocacy group.

“Many patients aren't aware of just how important this bill truly is. This should have been enacted and should be implemented in every state in the United States to help secure safe, and reliable pain care treatment for all patients who suffer chronic pain in the United States. To be able to have diagnoses from other states and it be accepted by your doctor is phenomenal as well.”

“All concerned parties need to salute and follow suit of the New Hampshire law,” Dr. Tennant said in an email to PNN. “The tragedy of the recent over-reach to control opioid abuse, diversion, and overdoses has caused immense suffering for legitimate, chronic pain patients, an epidemic of suicides among deprived pain patients, and the forced retirement of many worthy physicians (including yours truly). All this ugliness would have been prevented with the New Hampshire law.”

According to the CDC, New Hampshire physicians wrote 46.1 opioid prescriptions for every 100 persons in 2018. That’s well below that national average of 51.4 prescriptions. That same year, 412 people died of drug overdoses in New Hampshire, the vast majority of them involving synthetic opioids such as illicit fentanyl and other street drugs.  Only 43 of those 412 deaths involved a prescription opioid.  

How Ketamine Infusions Helped Me

By Madora Pennington, PNN Columnist

Berkley Jones is a tough lady. Already a nurse, she joined the U.S. Air Force in her late 30’s, even though she had never run a mile in her life. She worked hard, made it through boot camp and went directly into officer training.

Her life changed after an allergic reaction so severe it required hospitalization. Berkeley never felt the same. Aching and tired, an immunologist diagnosed her with fibromyalgia. Berkley powered on.

Then, during a training exercise that simulated medical scenarios that might happen from a nuclear attack, she severely injured her arm. She awoke after surgery with her arm swollen to five times its normal size and feeling like it was on fire. The pain was unbearable. This was the beginning of her life with Complex Regional Pain Syndrome (CRPS).

For the next six years, her life was consumed by pain. Berkley tried everything doctors recommended. Nothing eased her agony. Wheelchair-bound, she left the military. “I basically stayed in bed most of the time. I was very depressed and in pain,” she recalls.

Berkley heard of ketamine from a friend, looked around and was accepted into a ketamine for CRPS study. She checked into the hospital for 5 days of intravenous ketamine infusions. The results were life-changing.

“By the end of the study I was able to use a cane instead of a wheelchair. I was able to get out of bed and my pain was down to livable levels,” she says.

Berkley went on to write a book, “Ketamine Infusions: A Patient's Guide” and organized Facebook groups to educate patients and doctors about ketamine.

From Anesthetic to Party Drug

Ketamine has become a trendy new treatment for pain and depression, but it’s actually been around for decades. Chemists first discovered ketamine in 1956. By the 1960s, it was in widespread use as an anesthetic, from veterinary offices to battlefields. Ketamine is only approved by the FDA for depression, anesthesia and post-surgical acute pain — which makes its use as a treatment for chronic pain off-label.

Ketamine is not an opioid and does not suppress breathing, making it relatively safe to use. But it does produce an unusual state of dissociation. Patients appear awake, but are often unable to respond to sensory input.

Because the experience is similar to psychosis (delirium, delusions or hallucinations), ketamine also became an underground party drug.

More and more uses are being found for this very unique compound. Ketamine triggers production of glutamate in the brain, which makes connections in the brain regrow. Cognition and mood improve as the brain gets a reboot from the damage of long-term stress that leads to excessive negative thoughts and feelings.

For chronic pain sufferers, ketamine temporarily reverses “central sensitization,” where the brain and spinal nerves receive so much pain input, they go off kilter and the slightest touch becomes painful. This can get so bad that some chronic pain sufferers come to find odors, light and sound extremely painful. Brain fog, poor memory, poor concentration and intense anxiety also happen as part of this cycle of pain overload.

Low Dose Ketamine

While hospitals treat chronic pain patients with multi-day, high dose infusions of ketamine, outpatient clinics have sprouted up around the country, offering less intense treatment with lower doses.

I began seeing anesthesiologist Dr. David Mahjoubi, of Ketamine Healing Clinic of Los Angeles this year. My foot was very swollen, weeks after surgery. I was looking for a way to reduce the inflammation without stopping the healing process, as ice, NSAIDs and steroids tend to do. I was fortunate to get an appointment, as some LA clinics have a two-year waiting list for infusions.

Dr. Mahjoubi explained ketamine to me this way: “It increases connections between brain cells, thus ‘rewiring’ brain circuitry. Ketamine also blocks pain receptors called NMDA. This is the mechanism for blocking pain. For persons with PTSD, the trauma seems to get processed in a mild, non-troubling way. Ketamine separates one from their anxiety or depression. A ‘release’ is how patients commonly describe it.”

In Dr. Mahjoubi’s experience, ketamine infusions multiple days in a row can be a bit tough. Spreading them out over several weeks can still get good results. It depends on the individual and the amount of relief they receive.

I was afraid to try ketamine, but agreed to a low dose, one-hour infusion. The swelling in my foot dramatically improved. Chronic, low-grade discomfort along my spine also disappeared. I felt emotional relief from past trauma, from pain and other life experiences.  

I continued with one low dose infusion every few weeks. I don’t like the experience of the infusion, but it has been well worth it.

I was relieved of minor aches and able to increase my exercise. I did not feel terror when pain kicked in. Sometimes the pain just floated away.

I no longer feared my physical therapist touching my neck, and noticed I was enjoying it. My mood improved and I felt smarter. My ability to concentrate and remember improved. 

My neighbor’s annoying dog sounded like he was a few houses away, not barking inside my head.

MADORA PENNINGTON GETTING AN INFUSION

I felt more connected with others and more accepting of life — less anxious, less terrorized, less inclined to ruminate after every infusion.

I do tend to have fatigue or short periods of intense emotion, which is not unusual. For me, this is just hard work on my health, like going to physical therapy.

Treatment for Depression

Tara Dillon, a nurse practitioner, opened Happier You, a ketamine clinic in Columbus, Ohio, after infusions helped her 20-year struggle with depression. She’s had good results treating patients with psychiatric complaints, such as depression, anxiety, and bipolar disorder.

“It's well-known that pain and psychiatric diagnoses, particularly depression, tend to coincide. Patients often report physical improvements such as relief from IBS, improved sleep, or increased energy after ketamine therapy,” she explained. “While everyone is nervous for the first infusion, since they don't know what to expect, most patients end up enjoying the experience.”

Tara usually starts with a low dose of 0.5mg ketamine over 40 minutes, but will titrate up depending on how a patient responds. The most common side effect is mild nausea. Ketamine is not a cure for chronic pain, and it takes time to have an effect.

“For me, ketamine never kicks in immediately. Some people get relief in the first week. It takes at least two weeks and for some, like me, it can take 3 to 4 weeks,” says Berkley Jones. “Once it does kick in, I usually have low pain levels for about 6 to 8 weeks and then they start to climb again. Sometimes overnight the pain comes back excruciating, but the majority of the time it’s a slow increase in my pain back to where it was.” 

Unfortunately, insurance won’t always cover ketamine. While the drug itself is cheap, the infusions are expensive because patients must be monitored. That is a real shame, as high-impact chronic pain affects 20 million adults in the United States. This is terrible burden not only to the sufferer, but to their loved ones and the community. Perhaps this will change if and when ketamine is FDA approved as a treatment for chronic pain.

Madora Pennington lives with Ehlers-Danlos Syndrome. Sher writes about EDS and life after disability at LessFlexible.com. Her work has also been featured in the Los Angeles Times.

Becoming Aware of Ingrained Thoughts Can Reduce Pain and Anxiety

By Dr. David Hanscom, PNN Columnist

Self-awareness is the essence of healing. You cannot stimulate your brain to develop in a given direction unless you become aware of who you are and where you are starting from. Awareness is a meditative tool that can be used to calm the nervous system, reduce chronic pain and anxiety, and move forward with your life.

There are four patterns of awareness that I’ve written about in previous columns that work for me:

Environmental awareness is placing your attention on a single sensation – taste, touch, sound, temperature, etc. What you are doing is switching sensory input from racing thoughts about pain to another sensation. This is the basis of mindfulness – fully experiencing what you are doing in the moment.

I use an abbreviated version that I call “active meditation,” which is placing my attention on a specific sensory input for 5 to 10 seconds. It is simple and can be done multiple times per day.  

Emotional awareness is more challenging. It often works for a while, but then it doesn’t. When you are suppressing feelings of anxiety, your body’s chemistry is still off and full of stress hormones. This translates into pain and other physical symptoms.

Allowing yourself to feel all of your emotions is the first step in healing because you can’t change what you can’t feel. Everyone that is alive has anxiety. It is how we survive.

Judgment awareness is a major contributor to the mental chaos in our lives. You create a “story” or a judgment about yourself, another person or situation that tends to critical and inflexible.

Dr. David Burns in his book “Feeling Good” outlines 10 cognitive distortions that are a core part of our upbringing. They include:

• Labeling yourself or others

• “Should” thinking – the essence of perfectionism

• Focusing on the negative

• Minimizing the positive

• Catastrophizing

These ingrained thoughts are the fourth and most problematic to be aware of. You cannot see or correct them without actively seeking them out.

Our Brains Are Programmed at an Early Age

Our family interactions in childhood are at the root of how we act as adults. They stem from our upbringing and the fact that our brains are “hard-wired” during our formative years. We know from recent neuroscience research that concepts and attitudes from childhood are embedded in our brains as concretely as our perception of a chair or table.  

I used to say that thoughts are real because they cause neurochemical responses in your body. But they are not reality. I was wrong.  

It turns out that your thoughts and ideals are your version of reality. Your current life outlook continues to evolve along the lines of your early programming or “filter.” It is why we become so attached to our politics, religion, belief systems, etc. It is also the reason that humans treat each other so badly based on labels.  

One example, amongst an endless list, was how we locked up “communists” during the McCarthy era of the 1950’s and 1960’s. It is also why so many minority groups are persecuted and often treat each other badly. 

It is critical to understand that these are attitudes and behaviors that you cannot see because they are inherent to who you are. It is also maybe the greatest obstacle to people getting along. We are hard-wired enough that we don’t recognize or feel these patterns -- it’s just what we do. It’s behavior that sits under many layers of defenses and has to be dug out by each person.  

Our family-influenced habits and actions are much more obvious to our spouses and immediate family than they are to us. We can only get in touch with them through counseling, seminars, psychotherapy, self-reflection, spousal feedback, etc. What you are not aware of can and will control you.  

Slowing Down 

Here is an example of awareness I learned at work. A few years ago, before I retired as a spine surgeon, I became aware that I consistently started to speed up towards the end of each surgery. I also realized that over the years, probably 80% of my dural tears (the envelope of spinal tissue containing the nerves and cerebrospinal fluid) occurred in the last 30 minutes of a long surgery.  

The fatigue factor was part of the problem, but speed was more critical. I still didn’t notice that I was speeding up. I needed feedback from my partners or assistants, so I asked them to act as my coaches. I’d stop for a few seconds and say, “The difficult part of this case is done. It would be easy for me to relax and hurry to finish. Please speak up if you see me starting to rush.”  

Every move in spine surgery is critical, so I had to make the choice to consciously slow down. The end of each surgery is just as important as the beginning and middle. My complication rate dropped dramatically when I became more aware of what I was doing. 

This is a brief overview of how awareness plays a role in successfully navigating daily life. It’s something of a paradox, because when we are truly immersed in the moment there are no levels of awareness. It’s just complete “engagement-in-the-present-moment” awareness.

There are many layers to this discussion, but I hope this is a good starting point for you to understand the importance of mindful awareness.  

Dr. David Hanscom is a retired spinal surgeon. He recently launched a new website – The DOC Journey – to share his own experience with chronic pain and to offer a pathway out of mental and physical pain through mindful awareness and meditation.

Guideline Recommends Topical Pain Relievers for Muscle Aches and Joint Sprains

By Pat Anson, PNN Editor

A new guideline for primary care physicians recommends against the use of opioid medication in treating short-term, acute pain caused by muscle aches, joint sprains and other musculoskeletal injuries that don’t involve the lower back.

The joint guideline by the American College of Physicians (ACP) and the American Academy of Family Physicians (AAFP) – which collectively represent nearly 300,000 doctors in the U.S. – recommends using topical pain creams and gels containing non-steroidal anti-inflammatory drugs (NSAIDs) as first line therapy. Other recommended treatments include oral NSAIDs, acetaminophen, specific acupressure, or transcutaneous nerve stimulation (TENS).

Musculoskeletal injuries, such as ankle, neck and knee injuries, are usually treated in outpatient settings. In 2010, they accounted for over 65 million healthcare visits in the U.S., with the annual cost of treating them estimated at over $176 billion.

"As a physician, these types of injuries and associated pain are common, and we need to address them with the best treatments available for the patient. The evidence shows that there are quality treatments available for pain caused by acute musculoskeletal injuries that do not include the use of opioids," said Jacqueline Fincher, MD, president of ACP.

Opioids, including tramadol, are only recommended in cases of severe injury or intolerance to first-line therapies. While effective in treating pain, the guideline warns that a “substantial proportion” of patients given opioids for acute pain wind up taking them long-term.   

The new guideline, published in the Annals of Internal Medicine, recommends topical NSAIDs, with or without menthol, as the first-line therapy for acute pain from non-low back, musculoskeletal injuries. Topical NSAIDs were rated the most effective for pain reduction, physical function, treatment satisfaction and symptom relief.

Treatments found to be ineffective for acute musculoskeletal pain include ultrasound therapy, non-specific acupressure, exercise and laser therapy.

"This guideline is not intended to provide a one-size-fits-all approach to managing non-low back pain," said Gary LeRoy, MD, president of AAFP. "Our main objective was to provide a sound and transparent framework to guide family physicians in shared decision making with patients."

Guideline Based on Canadian Research

Interestingly, the guideline for American doctors is based on reviews of over 200 clinical studies by Canadian researchers at McMaster University in Ontario, who developed Canada’s opioid prescribing guideline. The Canadian guideline, which recommends against the use of opioids as a first-line treatment, is modeled after the CDC’s controversial 2016 opioid guideline.  

After reviewing data from over 13 million U.S. insurance claims, McMaster researchers estimated the risk of prolonged opioid use after a prescription for acute pain was 27% for “high risk” patients and 6% for the general population.

"Opioids are frequently prescribed for acute musculoskeletal injuries and may result in long-term use and consequent harms," said John Riva, a doctor of chiropractic and assistant clinical professor in the Department of Family Medicine at McMaster. "Potentially important targets to reduce rates of persistent opioid use are avoiding prescribing opioids for these types of injuries to patients with past or current substance use disorder and, when prescribed, restricting duration to seven days or less and to lower doses."

Riva and his colleagues said patients are also at higher risk of long-term use if they have a history of sleep disorders, suicide attempts or self-injury, lower socioeconomic status, higher household income, rural residency, lower education level, disability, being injured in a motor vehicle accident, and being a Medicaid recipient.

A history of alcohol abuse, psychosis, episodic mood disorders, obesity, and not working full-time “were consistently not associated with prolonged opioid use.”

The McMaster research, also published in the Annals of Internal Medicine, was funded by the National Safety Council (NSC), a non-profit advocacy group in the U.S. supported by major corporations and insurers. The NSC has long argued against the use of opioid pain relievers, saying they “do not kill pain, they kill people.”

What Is the Best Kind of Face Covering?

By Dr. Lynn Webster, PNN Columnist

As we learn more about COVID-19, top health officials have updated their advice about how we can protect ourselves from the virus.

On February 29, U.S. Surgeon General Jerome Adams, MD, tweeted: "Seriously people- STOP BUYING MASKS! They are NOT effective in preventing general public from catching #Coronavirus."

By July 20, Adams had changed his mind and was urging the public to “wear a face covering," although he still believes that wearing a mask should not be nationally mandated.

The Centers for Disease Control and Prevention also recommends wearing face masks when we are out in public and social distancing is difficult to maintain, or when we are around people who do not live in our household. So does the Food and Drug Administration.

There are different types of face masks, though, and some work better than others.

N95 masks provide the best possible protection, followed by surgical masks, but they should be reserved for healthcare workers. Personal protective equipment (PPE) is still in short supply globally because of hoarding, misuse and increased demand -- which puts healthcare workers and their patients at risk.

Members of the public can buy or make their own cloth masks to wear. Laboratory tests have shown that, when worn properly, cloth masks reduce the spray of viral droplets.

Some individuals, however, find it uncomfortable to wear a mask, or they may have a medical condition or disability that makes it difficult for them to breathe. Face masks may also fog up eyeglasses, irritate skin and inhibit communication by muffling the voice. People also frequently touch their faces to adjust or remove their masks, and that may increase the risk of infection.

Not all face masks provide equal protection. At best, cloth masks can be as effective as surgical masks. But using some variants, such as “neck gaiters” made of a polyester spandex, may even be worse than not wearing a mask at all.

Neck gaiters are less restrictive than masks, so they may be more comfortable. But their porous fabric breaks large viral particles into smaller ones, and that may allow them to linger in the air for a longer period of time. That makes them risky to the wearer and people around them.

Face Shields May Be Better Alternative

Jennifer Veltman, MD, chief of infectious diseases at Loma Linda University Health, recommends face shields made of clear plastic or plexiglass to people who are unable or unwilling to wear a mask. According to Veltman, if someone coughs 18 inches from you while you are wearing a face shield, the viral exposure is reduced by 96 percent.

Dr. Amesh Adalja, a senior scholar with the Johns Hopkins Center for Health Security, believes that face shields may eventually replace cloth masks because they are more comfortable to wear and easier to breathe with. And because they extend down from the forehead, face shields protect the eyes as well as the nose and mouth. That can be important since viruses can enter the body via the eyes. It is also easy to wipe face shields clean and reuse them.

Dr. Frank Esper, a pediatric infectious disease specialist at the Cleveland Clinic, agrees that face shields have many benefits over cloth masks. However, they also have drawbacks. For example, he points out that viruses survive longer on plastic face shields than on cloth masks. Also, if a person wearing a face shield coughs, viral droplets can escape because of the gap between the shield and the mouth.

Dr. Anthony Fauci, the nation’s top infectious disease expert, says, "If you have goggles or an eye shield, you should use it. It's not universally recommended, but if you really want to be complete, you should probably use it if you can.”

White House coronavirus response coordinator Dr. Deborah Birx may have the best recommendation of all: wear a cloth mask and a face shield simultaneously. The mask, she says, protects others, while the face shields protect wearers.

Advice about how to protect ourselves will evolve as we learn more about the virus. We’ll be needing face coverings for an indefinite time period, so it is wise to become familiar with the different options for protecting yourself and your family.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD

The Dismal Trajectory of Covid-19

By Roger Chriss, PNN Columnist

The coronavirus pandemic continues to sweep across the United States. So too does misleading information about the pandemic and its likely trajectory.

“We have fewer deaths per capita than the United Kingdom and most other nations in Western Europe, and heading for even stronger numbers,” President Trump said in a press briefing this week.

Although the U.S. has a lower per capita death rate from Covid-19 than some European nations, the president’s claim is both mistaken and simplistic. Worldwide, the U.S. ranks fourth in deaths per 100,000 people, according to the Johns Hopkins Coronavirus Resource Center.

More important is the trajectory of the pandemic. European nations were hit hard by the coronavirus early on. For example, Belgium, Italy and Spain saw most of their deaths in March and April, and almost none since.

It is more informative to look at how countries have done after the initial onslaught. In other words, what are the trends since May 1st?

The trends in the U.S. are dismal, with only Brazil and India beginning to compare. According to STAT News’ Covid-19 Tracker, the U.S. has had over 100,000 deaths since May 1. Spain, by comparison, has had 3,600 deaths; Belgium: 1,300; Sweden: 3,000; Italy: 7,000; and the United Kingdom: 19,000 deaths.

In other words, the U.S. has had about three times as many deaths as all the other countries listed above combined, whose population is 192 million or about two-thirds that of the U.S. Only the United Kingdom has a comparable rate of increase in deaths.

Trends for confirmed cases since May 1 are even worse. Back then the U.S. had just over 1 million coronavirus cases. It has since more than quintupled, now totaling over 5.2 million cases. In that same time period, infections in the UK doubled and most other European countries barely added any.

Disease trajectories look even worse for the U.S., which keeps adding more than 50,000 new cases daily, despite testing rates falling by over 10% since mid-July. On August 11, the U.S. saw about 1,500 deaths, more than the total number of deaths in Belgium since May 1.

A More Realistic Case-Fatality Rate

Covid-19 deaths lag new infections by about four weeks. This means the total deaths today can be divided by the total number of cases from four weeks ago to determine what the death rate is.

Covid Tracking data shows the U.S. had 145,245 deaths as of July 31. Four weeks prior to that, on July 3, there were 2,786,467 cases. This gives a case-fatality rate of 5.21% for those dates, higher because of the temporal adjustment that accounts for how Covid-19 behaves.

Moreover, because of more testing, the U.S. has greatly increased its total number of confirmed cases, which in turn lowers the case-fatality ratio. In other words, improvements in the case-fatality ratio are due to testing rates rising even faster than death rates, and not because of an effective pandemic response.

Further, there is considerable under-reporting of deaths in the U.S. For instance, some states have updated their numbers with backfill deaths, as New Jersey did with 1,800 deaths in June, Texas did with 631 in July, and Florida did with dozens last week.

It is also informative to look at the total number of deaths. A new analysis by The New York Times estimates that there could be as many as 200,000 excess deaths attributable to Covid-19 by late July.

Lasting Symptoms

We’re also learning that people who recover from Covid-19 often have symptoms that linger long after the active virus goes away. The CDC reports that about a third of patients with Covid take more than three weeks to recover.

Dr. Anthony Fauci, told STAT News that many survivors suffer from profound exhaustion, muscle pain, headaches, and have trouble thinking and remembering – symptoms that are “highly suggestive” of myalgic encephalomyelitis, the chronic illness commonly called chronic fatigue syndrome or ME/CFS.  

The coronavirus pandemic is now recognized as being as deadly as the 1918 flu pandemic. The worst may yet lay ahead. CDC director Dr. Robert Redfield recently warned that when autumn arrives and the flu season returns, the U.S. could be facing the “worst fall” in its history if more Americans do not adopt prevention measures like wearing masks and social distancing.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research. 

Does Transparency in Pricing Really Lower Healthcare Costs?

By Barby Ingle, PNN Columnist

Each year I get asked to support multiple legislative bills that could impact the chronic pain community. I look through them, think them through, and have written, called, testified and shared many over the years.

But sometimes a bill I supported comes back to haunt me as a patient. The intended consequences are not what I thought they would be.

Such is the case in Arizona, where I live. A state law was passed in 2013 calling for transparency in healthcare pricing (HB 2045). The law requires most healthcare providers to tell patients the “direct pay price” for a service or procedure. I always thought it was a good thing to have transparency in pricing and for patients to know what their responsibility is, so I supported the bill.

In 2019, Arizona passed another law (HB 2166) that authorized providers to collect “advance payments” from patients before a service is performed and without waiting for insurers to pay. The new law was quick to be adopted and providers have already started using it more than expected. This is causing an issue in getting the healthcare we need in a proper and timely manner.

The law really didn't affect me until this year, when I went through all the testing and multiple office visits with a new provider. Then I was called to the office of the “scheduling manager.” This was right after the doctor told me that I need a procedure on my bladder. I have an issue known as neurogenic bladder, where I lose control of my bladder nerves and muscles.

In the office, the woman wrote on a piece of paper the cost of the procedure ($30,000) based on my insurance (Medicare) and how much I would have to pay in advance, which was $6,000.

Before the law went into effect, I could pay the bill over time and get the procedure done when I needed it. But now, she says, I had to pay the entire $6,000 before even scheduling the procedure. I do not have $6,000 to pay upfront, so I am unable to schedule it.

New Hospital Rules

Arizona is not the only state that has passed healthcare price transparency laws; California, Connecticut, Louisiana, Maine, Maryland, Nevada, Oregon, Tennessee and Vermont have similar laws.

Federal rules are slated to go into effect in January, 2021 that will require hospitals to disclose their price information, including their negotiated prices with insurers. It is part of an effort by the Trump administration to increase price transparency in hopes of lowering healthcare costs on everything from hospital services to prescription medicines.

The federal efforts are controversial and have already faced court challenges. For good reason, seeing how transparency is being implemented in Arizona.  

Both HB 2045 and HB 2166 are good examples of bills I advocated for that are now being used against me and others in the chronic pain community who are low income or under-insured. It’s just a new way to stop healthcare or slow it down. Instead of having insurance companies delay care with prior authorizations and step therapy -- which I have been through as well -- they stop you at the doctor's office now.  

The same thing happened when I came down with Valley Fever pneumonia this past November. My provider ordered chest x-rays, but before I could get them, I had to pay my portion of the bill. I had to borrow money to get the x-rays done.  

Turns out I was way sicker than my provider thought and he apologized afterwards. Once I was diagnosed, follow up x-rays were covered, except when one lady was at the desk. She always charges me and says she has to because of the price transparency rules.  

I am hearing more and more stories about HB 2166 being used against the chronic and rare disease communities. As I said, it is odd to not want full transparency, but I would rather have access to healthcare when it is needed and then work on paying the bill afterward. Otherwise, like me, many of you may not receive the care you need, making our health worse and more expensive. 

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

Study Finds Low Risk of Rx Opioid Abuse Among Young People

By Pat Anson, PNN Editor

The stories are heartbreaking. A young man gets a prescription for opioid pain medication and quickly becomes addicted.

“I lost everything. I had to leave school, and stop playing sports in college. I started to watch my life slip away. These drugs are addictive. One prescription can be all it takes to lose everything,” says Mike.

A mother loses her son to an overdose.

“My son… was 20 years old when he was prescribed opioids,” says Ann Marie. “It took him five days to get addicted.”

These are some of the real-life stories being told in a CDC awareness campaign that warns against the use of prescription opioids. “It only takes a little to lose a lot,” is the theme in a series of CDC videos, billboards and online ads.

The stories are sad, but the widespread belief that adolescents and young adults can quickly become addicted to prescription opioids is not accurate for the vast majority of young people, according to a large new study published in JAMA Pediatrics.

Researchers at Indiana University looked at a database of over 77,000 young people in Sweden between the ages of 13 and 29 who were prescribed opioids for the first time. They were compared to a control group that was given non-steroidal anti-inflammatory drugs (NSAIDs) for pain relief. Both groups had no previous signs of substance abuse.

Only 4.6% of those prescribed an opioid developed a substance use disorder or other substance-related issue, such as an overdose or criminal conviction within five years of being prescribed.  That compared to 2.4% of those in the control group.

"By using several rigorous research designs, we found that there was not a huge difference -- in fact, the difference was smaller than some previous research has found,” said Patrick Quinn, PhD, an assistant professor at the IU School of Public Health-Bloomington. “But the study still shows that even a first opioid prescription may lead to some risk."

Interestingly, young people given oxycodone were at no greater risk of developing a substance abuse problem than those given “weaker” opioids such as codeine or tramadol.

Quinn says further research is needed to determine how much substance abuse risk is caused by opioid medication alone and how much is related to other issues, such as mental health, genetics and environmental factors.

"We need to have a good understanding of what those risks might be in order for patients and doctors to make informed decisions," said Quinn. "Our findings highlight the importance of screening for substance use disorders and other mental health conditions among patients with pain, including those receiving opioid therapy."

A 2018 study of young people given opioids after their wisdom teeth were removed also found the risk of long-term use low. The study of over 70,000 teens and young adults found that only 1.3% were still being prescribed opioids months after their initial prescription by a dentist.  

Pharmacies Sued for Discrimination Against Pain Patients

By Pat Anson, PNN Editor

National class action lawsuits have been filed against three of the nation’s largest pharmacy chains for discriminating against pain patients trying to fill legitimate prescriptions for opioid medication. 

Class action complaints against Walgreens, Costco and CVS Pharmacy were filed in California and Rhode Island on behalf of two women seeking legal relief that will allow them to get their opioid prescriptions filled without delays or restrictions, and without the fear that their prescriptions will be denied. 

Edith Fuog, a 48-year old Florida woman and breast cancer survivor, lives with trigeminal neuralgia, lupus, arthritis and other chronic pain conditions. Fuog’s lawsuit alleges that since 2017, CVS pharmacies have refused to fill her prescriptions for opioid medication in violation of the American with Disabilities Act (ADA), the Rehabilitation Act of 1973 and the anti-discrimination provisions of the Affordable Care Act.  Her complaint was filed in Rhode Island, where CVS has its corporate headquarters.

43-year old Susan Smith of Castro Valley, California, filed a similar class action against Walgreens and Costco in the Northern District of California. Smith suffers from Mesial Temporal Lobe Sclerosis, which resulted in scar tissue in her brain that causes severe chronic migraines. The only medication that gives Smith relief from headache pain are opioids.  She alleges that Walgreens and Costco pharmacies refused to fill her opioid prescriptions in violation of federal law.

"Many Americans are unaware of the difficulties chronic pain patients have getting pharmacies to fill their lawfully-obtained opioid prescriptions. It is not only a crisis for Edith and Susan, but for millions of Americans due to the backlash caused in part by the national publicity concerning opioid abuse,” said Scott Hirsch, a Florida lawyer who is one of several lead attorneys handling the cases.

“These lawsuits seek to allow the millions of chronic pain patients to obtain their legitimate opioid prescriptions without being discriminated against, harassed, denied, or embarrassed.  It will hopefully improve their quality of life and save many lives in the process."

Pain patients in the U.S. have complained for years about pharmacists refusing to fill their opioid prescriptions or reducing them to lower doses. It’s also not uncommon for patients to encounter delays and excuses, such as a pharmacy claiming it was out of stock of a particular medication. The California and Rhode Island cases are believed to be the first class action lawsuits to address the problem.

“I have always thought that this is one of the better potential legal avenues for an ADA action regarding prescription opioids.  It is a violation for any person with a disability to be denied service by a place of public accommodation, and pharmacies are clearly covered as places of public accommodation under the ADA,” said Kate Nicholson, a patient advocate and civil rights lawyer who handled discrimination cases at the Department of Justice for over 20 years.

“Whether this will succeed will depend on a lot of intangibles such as the quality of the complaints, what is learned during discovery about any nationwide policies the pharmacy chains had in place, or, alternatively, repeated instances of fills for legitimate prescriptions being denied. Also, whether the court which hears it considers the refusal to fill prescriptions tantamount to a denial of service. I think it’s promising.”

Corporate Policies Profile Patients

While pharmacies have a legal right to refuse to fill prescriptions they consider suspicious or inappropriate, the lawsuits allege that CVS, Walgreens and Costco adopted corporate policies that encourage their pharmacists to profile patients as drug abusers and impose limits on opioid medication. The companies did not respond to a request for comment.

Walgreens adopted a “secret checklist” in 2013 that required its pharmacies to watch for red flags such as patients paying for opioid prescriptions in cash, seeking an early refill or taking an “excessive” number of pills. If anything was suspicious, pharmacists were instructed to “inform the patient that it may take additional time to process the prescription.”  The policy was implemented after Walgreens was fined $80 million by the DEA for violating rules for dispensing controlled substances.

CVS adopted a policy in 2017 to limit the dose and supply of opioids for short-term, acute pain to seven days. For both acute and chronic pain, opioid prescriptions were not filled if they exceeded a 90mg MME daily dose. Customers enrolled in CVS’ pharmacy benefit plan were also required to try immediate release formulations, before using extended release opioids. The policy was adopted after CVS was fined hundreds of millions of dollars for violations of the Controlled Substances Act.

In a recent letter to the CDC, the American Medical Association called the CVS and Walgreens policies "inappropriate" because they misapplied the CDC opioid guideline in ways that were harmful to patients. The AMA said it has received numerous complaints about Walgreens pharmacists refusing to fill prescriptions because of corporate policy.

Other big pharmacy chains have similar policies. Walmart has been accused of “blacklisting” doctors for writing high dose prescriptions. And a tearful video posted online by a California woman with stage 4 breast cancer went viral after a Rite Aid pharmacist refused to fill her prescription for Norco.

The law firms that filed the cases against Walgreens, Costco and CVS are seeking additional information from patients interested in joining the legal action at this website.

Hospitals Hit Hard by Loss of Joint Replacement Surgeries

By Bernard J. Wolfson, Kaiser Health News

Dr. Ira Weintraub, a recently retired orthopedic surgeon who now works at a medical billing consultancy, saw a hip replacement bill for over $400,000 earlier this year.

“The patient stayed in the hospital 17 days, which is only 17 times normal. The bill got paid,” mused Weintraub, chief medical officer of Portland, Oregon-based WellRithms, which helps self-funded employers and workers’ compensation insurers make sense of large, complex medical bills and ensure they pay the fair amount.

Charges like that go a long way toward explaining why hospitals are eager to restore joint replacements to pre-COVID levels as quickly as possible — an eagerness tempered only by safety concerns amid a resurgence of the coronavirus in some regions of the country. Revenue losses at hospitals and outpatient surgery centers may have exceeded $5 billion from canceled knee and hip replacements alone during a roughly two-month hiatus on elective procedures earlier this year.

The cost of joint replacement surgery varies widely — though, on average, it is in the tens, not hundreds, of thousands of dollars. Still, given the high and rapidly growing volume, it’s easy to see why joint replacement operations have become a vital chunk of revenue at most U.S. hospitals.

The rate of knee and hip replacements more than doubled from 2000 to 2015, according to inpatient discharge data from the Agency for Healthcare Research and Quality. And that growth is likely to continue: Knee replacements are expected to triple between now and 2040, with hip replacements not far behind, according to projections published last year in the Journal of Rheumatology.

Joint procedures are usually not emergencies, and they were among the first to be scrubbed or delayed when hospitals froze elective surgeries in March — and again in July in some areas plagued by renewed COVID outbreaks. Loss of the revenue has hit hospitals hard, and regaining it will be crucial to their financial convalescence.

“Without orthopedic volumes returning to something near their pre-pandemic levels, it will make it difficult for health systems to get back to anywhere near break-even from a bottom-line perspective,” said Stephen Thome, a principal in health care consulting at Grant Thornton, an advisory, audit and tax firm.

Billions in Revenue Lost

It’s impossible to know exactly how much knee and hip replacements are worth to hospitals, because no definitive data on total volume or price exists.

But using published estimates of volume, extrapolating average commercial payments from published Medicare rates based on a study, and making an educated guess of patient coinsurance, Thome helped KHN arrive at an annual market value for American hospitals and surgery centers of between $15.5 billion and $21.5 billion for knee replacements alone.

That suggests a revenue loss of $1.3 billion to $1.8 billion per month for the period the surgeries were shut down. These figures include ambulatory surgery centers not owned by hospitals, which also suspended most operations in late March, all of April and into May.

If you add hip replacements, which account for about half the volume of knees and are paid at similar rates, the total annual value rises to a range of $23 billion to $32 billion, with monthly revenue losses from $1.9 billion to $2.7 billion.

The American Hospital Association projects total revenue lost at U.S. hospitals will reach $323 billion by year’s end, not counting additional losses from surgeries canceled during the current coronavirus spike. That amount is partially offset by $69 billion in federal relief dollars hospitals have received so far, according to the association. The California Hospital Association puts the net revenue loss for hospitals in that state at about $10.5 billion, said spokesperson Jan Emerson-Shea.

Hospitals resumed joint replacement surgeries in early to mid-May, with the timing and ramp-up speed varying by region and hospital. Some hospitals restored volume quickly; others took a more cautious route and continue to lose revenue. Still others have had to shut down again.

At the NYU Langone Orthopedic Hospital in New York City, “people are starting to come in and you see the operating rooms full again,” said Dr. Claudette Lajam, chief orthopedic safety officer.

At St. Jude Medical Center in Fullerton, California, where the coronavirus is raging, inpatient joint replacements resumed in the second or third week of May — cautiously at first, but volume is “very close to pre-pandemic levels at this point,” said Dr. Kevin Khajavi, chairman of the hospital’s orthopedic surgery department. However, “we are constantly monitoring the situation to determine if we have to scale back once again,” he said.

In large swaths of Texas, elective surgeries were once again suspended in July because of the COVID-19 resurgence. The same is true at many hospitals in Florida, Alabama, South Carolina and Nevada.

The Mayo Clinic in Phoenix suspended nonemergency joint replacement surgeries in early July. It resumed outpatient replacement procedures the week of July 27, but still has not resumed nonemergency inpatient procedures, said Dr. Mark Spangehl, an orthopedic surgeon there. In terms of medical urgency, joint replacements are “at the bottom of the totem pole,” Spangehl said.

In terms of cash flow, however, joint replacements are decidedly not at the bottom of the totem pole. They have become a cash cow as the number of patients undergoing them has skyrocketed in recent decades.

‘Industrial-Scale’ Surgeries

The volume is being driven by an aging population, an epidemic of obesity and a significant rise in the number of younger people replacing joints worn out by years of sports and exercise.

It’s also being driven by the cash. Once only done in hospitals, the operations are now increasingly performed at ambulatory surgery centers — especially on younger, healthier patients who don’t require hospitalization.

The surgery centers are often physician-owned, but private equity groups such as Bain Capital and KKR & Co. have taken an interest in them, drawn by their high growth potential, robust financial returns and ability to offer competitive prices.

“Generally the savings should be very good — but I do see a lot of outlier surgery centers where they are charging exorbitant amounts of money — $100,000 wouldn’t be too much,” said WellRithm’s Weintraub, who co-owned such a surgery center in Portland.

After canceling his hip replacement surgery in March because of COVID-19, Matthew Davis overcame his concerns and rescheduled in June because the procedure was performed at an outpatient surgery center, which meant no overnight hospital stay. (Matthew Davis)

Fear of catching the coronavirus in a hospital is reinforcing the outpatient trend. Matthew Davis, a 58-year-old resident of Washington, D.C., was scheduled for a hip replacement on March 30 but got cold feet because of COVID-19, and canceled just before all elective surgeries were halted. When it came time to reschedule in June, he overcame his reservations in large part because the surgeon planned to perform the procedure at a free-standing surgery center.

“That was key to me — avoiding an overnight hospital stay to minimize my exposure,” Davis said. “These joint replacements are almost industrial-scale. They are cranking out joint replacements 9 to 5. I went in at 6:30 a.m. and I was walking out the door at 11:30.”

Joint Replacement Often Unnecessary

Acutely aware of the financial benefits, hospitals and surgery clinics have been marketing joint replacements for years, competing for coveted rankings and running ads that show healthy aging people, all smiles, engaged in vigorous activity.

However, a 2014 study concluded that one-third of knee replacements were not warranted, mainly because the symptoms of the patients were not severe enough to justify the procedures.

“The whole marketing of health care is so manipulative to the consuming public,” said Lisa McGiffert, a longtime consumer advocate and co-founder of the Patient Safety Action Network. “People might be encouraged to get a knee replacement, when in reality something less invasive could have improved their condition.”

McGiffert recounted a conversation with an orthopedic surgeon in Washington state who told her about a patient who requested a knee replacement, even though he had not tried any lower-impact treatments to fix the problem.

“I asked the surgeon, ‘You didn’t do it, did you?’ And he said, ‘Of course I did. He would just have gone to somebody else.’”

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.