Study Finds Only 1.3% of Overdose Victims Had Opioid Prescription

By Pat Anson, PNN Editor

It’s long been a popular belief that prescription opioids fueled the nation’s opioid crisis and play a major role in overdose deaths. The CDC’s 2016 opioid guideline says as much.

“Sales of opioid pain medication have increased in parallel with overdose deaths,” the guideline states. “Having a history of an opioid prescription is one of many factors that increase risk for overdose.”

But a new study by researchers in Massachusetts has turned that theory on its head. Prescription opioids are usually not involved in overdoses. And even when they are, the overdose victim rarely has an active prescription for them – meaning the medications were diverted, stolen or bought on the street.  

“Commonly the medication that people are prescribed is not the one that’s present when they die. And vice versa. The people who died with a prescription opioid like oxycodone in their toxicology screen often don’t have a prescription for it,” says lead author Alexander Walley, MD, a researcher at Boston Medical Center and Associate Professor of Medicine at Boston University School of Medicine.

Walley and his colleagues analyzed nearly 3,000 opioid overdose deaths in Massachusetts from 2013 to 2015, a period when heroin overdoses were surging and the first wave of illicit fentanyl was entering the black market.

Toxicology screens showed that multiple drugs were involved in most of the overdoses, with heroin detected in 61% of the deaths and fentanyl in 45% of them.

Prescription opioids alone were detected in only 16.5% of the overdoses.

The researchers didn’t stop there. They wanted to know if the people who died had prescriptions for the opioid medications that killed them. To their surprise, only 1.3% of them did.  

“We were able to link individuals who died of an overdose to their prescription monitoring program records.  So we could see how many people who died of an opioid overdose had been prescribed a medication at the time of their death. It turns out that was a minority of the patients,” Walley told PNN.

“If it were only the opioids we prescribed that were killing people, then we would have a perfect match between what we prescribed and what people were dying from. But that only happens 1.3% of the time.”

Rx Opioid Myths Exposed

Walley’s study, published in the journal of Public Health Reports, is one of the first to compare overdose toxicology reports with data collected in Prescription Drug Monitoring Programs (PDMPs). The findings strongly suggest that patients with legitimate prescriptions rarely overdose. And they provide a more nuanced and detailed view of what we usually hear about opioid-related overdoses.

For example, only 6% of those who died with oxycodone in their system had an active prescription for it, meaning the other 94% were taking oxycodone that was diverted or perhaps leftover from an old prescription. Active prescriptions for tramadol, morphine, hydrocodone and hydromorphone were found in less than 1% of the people who died with the drugs in their system. 

Interestingly, active prescriptions for two opioids used to treat addiction --- methadone and buprenorphine (Suboxone) – were found in about 3% of overdoses linked to the drugs.

Massachusetts pain patient David Wieland says the study findings confirm what he has long believed about the opioid crisis.

“The results of this study show that PROP (Physicians for Responsible Opioid Prescribing) and the anti-opioid zealots have been misleading the public for years, as it completely blows the myths they have been spinning out of the water,” Wieland said. “For years they have constantly blamed the majority of these overdose deaths on prescription pain medication. Even as prescribing numbers decreased and overdoses only skyrocketed, they still pushed forward with their lies and propaganda.”

Wieland says his own doctor bought into the myths, insisting that 75% of all overdose victims were pain patients who died by taking their opioid medication as prescribed.

“This was his excuse to further take me completely off my medication,” said Wieland. “Think I'm going to have to send this study to him along with a note reminding him about the supposed facts he tried to shove down my throat.”

Dr. Walley says regulators and public health officials should also take note, and that public education campaigns should not solely focus on the risks of prescription opioids. The CDC’s Rx Awareness campaign, for example, warns people about the abuse of prescription opioids, but says nothing at all about illicit opioids.

“Policy makers may too narrowly focus efforts on preventing the misuse of prescription opioids and devote inadequate resources to addressing heroin and illicit fentanyl use,” Walley said. “I think we can see that we don’t just have a prescription opioid problem. We have an illicit opioid problem. And I think our policy should reflect that.”

A Day in the Life of a Chronic Pain Sufferer

By Katie Burge, Guest Columnist

My day usually begins around 3 a.m., whether I want it to or not.  No matter what time I went to bed or how tired I am, I wake up in those pre-dawn hours, overwhelmed by excruciating pain and trembling from a panic attack caused by the pain. I wake up because I hurt too bad to stay asleep.

Don't get me wrong. I'm happy enough just to wake up at all - but what I wouldn't give some time to actually get a good night's sleep.

I grab a cup of coffee and debate whether or not I can "afford" to take a pain pill that will give me some modicum of relief. I have to be extremely careful with my medication.  I can't just take a dose because I'm in agony and need it. I don't get enough to allow myself that luxury. My monthly prescription for pain medication allows me to survive semi-comfortably for just over half the month.

It feels like I'm on an evil roller coaster ride, where my pain levels off for 3 or 4 hours, then spikes exponentially over the next few hours until I can take another dose.

As my day progresses, I try to choose the optimum time to take my pain medication, depending on what I need (or attempt) to accomplish for the day.  I struggle to take a shower, do the dishes or fix something to eat. Some of my time is spent writing.

One of the most important things in my life right now is advocating for better treatment for all chronic pain patients. I would like to be physically able to go to the state capitol or even to Washington DC to lobby for more compassionate treatment and to convince the bureaucrats there that pain patients are not to blame for the "opioid epidemic."

But that will have to wait until I can get my own pain reliably controlled.

When I do sleep, I dream about being able to do theater again, travel somewhere other than to a doctor's appointment or to run -- do any of a hundred things I’d like to do if I could exist away from the recliner that I essentially live in. It's the only place where I can find some degree of comfort.

For the past 20 years I have been dealing with increasingly severe chronic pain from a plethora of conditions like degenerative disc disease, failed back syndrome, spinal stenosis, spondylolisthesis, osteoarthritis, myofascial pain syndrome and fibromyalgia.

Any one of these conditions can generate enough pain to make a grown man cry like a little girl.  Combined, they can transform a normally relaxing shower into a study in torture -- where the droplets of water hitting my skin feel like daggers.

KATIE BURGE

Over the years, I think I've tried every treatment offered by medical science, as well as many alternative treatments - anything that might have the potential to take my pain down a notch or two. Once, I even started studying medical texts, trying to gain enough of an understanding of the logistics of pain that I could design a visualization exercise that would help me control it.

I never wanted to end up taking opioids. The pain medication I take is what's known as a "short-acting" or "immediate release" opioid, a type of drug that's actually designed for temporary acute pain, not round-the-clock chronic pain like I have.

Unfortunately, doctors are afraid to use the extended release medications that were actually designed for continuous pain.  This is the result of legal and political pressure from politicians who think they can solve the opioid epidemic by torturing pain patients. Somehow, they believe they can keep recreational drug users from overdosing by denying pain sufferers the legitimate medical use of opioids.

Short-acting opioids offer pain relief for a period of about four hours.  I am expected to make it a full 8 hours inbetween doses. That's where the evil roller coaster comes in. I take my medication, which gives me up to 4 hours relief, and then the pain spikes over the next 4 hours — making me feel worse than I did to start with.

It's up and down, up and down all day long and it's exhausting! If I was allowed to take the medication as it was made to be taken (every 4 hours), it would afford me more enough pain control that I could build a more normal life for myself. Doctors used to say it was safer and better that way, but that was before they became so afraid.

When it starts getting dark each day, I can feel the panic rising in my chest because soon it will be time to sleep and that means more pain. The depression and shame tend to crop up when it gets dark as well. The depression comes from being so isolated. As a person in pain, you spend a lot of time alone.

The shame comes from just being in pain in the first place, as society seems to tell us that we should be able to control our pain mentally, without medical or pharmaceutical intervention.

This is my day... EVERYDAY.

It's starting to get dark now, and the panic is boiling up again.

Katie Burge lives in Mississippi.  

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org. 

The information in this column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Study Finds Mindfulness Reduces Pain and Despair

By Pat Anson, PNN Editor

“Mindfulness” may as well be a four-letter word to chronic pain patients. Many have tried mindfulness meditation – a form of cognitive behavioral therapy (CBT) – and found it does not relieve their pain.

“The quackery continues,” one reader told us. “This is a modern-day lobotomy experiment.”

“I have tried CBT and mindfulness. They made me feel much worse emotionally, paradoxically enough, and made me more acutely aware of the pain,” another patient said.

“We have ALL been through almost every other treatment you can think of including psychological therapy, mindfulness, yoga, etc. before given opiates. We still use these to help cope, but they do not really help much when all you want is to die to stop the pain you are in,” another patient wrote.

A new study at the University of Utah provides some intriguing evidence that mindfulness can enhance the quality of life, while also reducing pain and the need for opioids.

The study, published in the journal Science Advances, looked at data from four experiments involving 135 adults who took opioids daily for chronic pain.

Participants were randomly assigned to two groups that participated in eight weeks of support group therapy or eight weeks of a meditation program called Mindfulness-Oriented Recovery Enhancement (MORE), which was primarily designed to treat addiction. Patients in the MORE group were asked to focus on rewarding experiences, such as watching a beautiful nature scene.

At the beginning and end of the study, researchers collected electroencephalogram (EEG) data from the participants, using electrodes on the face and scalp to track their eye movements, smiles, frowns, changes in heart rate, and brain function.

Researchers say patients in the MORE group had fewer cravings for opioids and became more responsive to pleasant images by using mindfulness. They also reported significantly less pain, more positive emotions, enhanced joy and more meaning in life compared to patients in the therapy group.

IMAGE COURTESY UNIVERSITY OF UTAH

"Previous research shows that prolonged use of opioids makes our brains more sensitive to pain and less receptive to the joy one might normally experience from natural rewards, like spending time with loved ones or appreciating a beautiful sunset," said lead author Eric Garland, PhD, an associate dean for research at the University of Utah College of Social Work.

“This blunted ability to experience natural positive feelings leads people to take higher and higher doses of opioids just to feel okay, and ultimately propels a downward spiral of opioid dependence and misuse. Because of this downward spiral, scholars are increasingly referring to chronic pain and opioid misuse as 'diseases of despair.'"

Garland developed MORE as a mindfulness therapy to promote positive psychological health while simultaneously addressing addiction, pain and stress. MORE teaches mental training techniques to help people find meaning in the face of adversity, while simultaneously alleviating physical and emotional pain by cultivating positive feelings and experiences.

"MORE teaches people to better notice, appreciate and amplify the good things in life, while also deriving meaning and value from difficult situations," said Garland.

Previous studies on mindfulness using MRI imaging found that changes in the brain do occur during meditation, making people less sensitive to pain. Meditation activated brain regions associated with the self-control of pain, while deactivating regions that process sensory information.

You can take a free 20-minute guided meditation at Meditainment.com. The online mindfulness program takes you into a “secret garden” of your own imagination, designed to help your pain seem less important.

8 of 10 Doctors Won’t Take New Patients on Opioids

By Pat Anson, PNN Editor

Nearly three quarters of primary care doctors (72%) worry that chronic pain patients will use illicit drugs if they lose access to prescription opioids, according to a new survey by Quest Diagnostics. And 77% believe the stigma surrounding drug addiction impairs patient care.

Despite those concerns about patient stigma and illegal drug use, the online survey of 500 physicians found that 8 out of 10 are reluctant to take on new patients who are currently prescribed opioids.

“Quest Diagnostics undertook this research so that we could provide insights into the evolving drug crisis and the potential role of physicians’ perspectives about their patients in drug misuse and use disorders,” said Harvey Kaufman, MD, Senior Medical Director, Quest Diagnostics.

“We found that primary care physicians, who are on the front lines of the drug epidemic, are well-intentioned but under-prepared and may miss some of the drug misuse risks affecting their patients.”

Quest compared the survey results to an analysis of 4.4 million drug tests ordered by physicians for patients prescribed opioids and other controlled substances. The findings suggest that many physicians have a poor understanding of their patients’ drug use.

For example, Quest found that over half of patients (51%) showed signs of misusing a prescribed drug, yet 72% of physicians believe their patients take controlled medications as prescribed.

Quest broadly defines drug “misuse” by including the absence of a prescribed medication. Many patients choose not to take a drug because they can’t afford it, don’t like its side effects, or feel they don’t need it. Patients required to have drug tests are also not representative of the general population.

Other key findings:

• 62% of doctors believe the opioid crisis will morph into a prescription drug crisis

• 24% of patients combined legal medications with other non-prescribed drugs or illicit substances

• 95% of doctors are confident in their ability discuss drug misuse with patients, but only 55% actually do

• 70% of doctors wish they had more training on how to taper patients off opioids.

• 75% of doctors wish they had more training on addiction

The Quest lab tests also found concerning results about the misuse of gabapentin (Neurontin), an anti-convulsant drug increasingly prescribed to treat pain. Over 13% of patients showed signs of misusing gabapentin in 2018, making it the mostly commonly misused prescription drug.

Nearly 8 out of 10 doctors (78%) said they often prescribe gabapentin as an alternative to opioids, but only 34% were concerned about its misuse.

“A vast majority of physicians recognize the need for more tools to prevent opioid drug misuse and substance use disorders, and that is why many are tightening opioid prescribing and turning to gabapentin as an alternative,” said pain specialist Jeffrey Gudin, MD, Senior Medical Advisor, Quest Diagnostics.

“While gabapentin may not have opioids’ addictive potential, it can exaggerate euphoric effects when combined with opioids or anxiety medications. This drug mixing is dangerous.”

Gabapentin and pregabalin (Lyrica) belong to a class of nerve medication known as gabapentinoids. A recent study found gabapentinoids increase the risk of suicide, overdose, traffic accidents and injuries in younger people. Sales of gabapentinoids have tripled in recent years in the United States, where they are often promoted in prescribing guidelines as safer alternatives to opioids.

What Are Health Risks of Vaping CBD?

By Roger Chriss, PNN Columnist

An outbreak of lung illnesses linked to vaping is raising important questions about the safety of vaping cannabis products. The cause is still unclear, but the CDC reports about 76% percent of the patients who became ill vaped products containing THC – the psychoactive ingredient in cannabis. Only about 17% reported vaping a cannabidiol (CBD) product.

At present, very little is known about CBD vaping safety. The World Health Organization’s 2017 report on cannabidiol looked at oral, sublingual and intranasal routes of administration. When the WHO wrote that “CBD is generally well tolerated with a good safety profile,” it was not considering vaping at all.

The Food and Drug Administration still considers CBD in food and drugs sold commercially to be illegal, unless the product falls under the Food, Drug and Cosmetic Act. Vaping CBD does not, and so there has been no testing or regulatory action.

There have been no good human studies on CBD vaping. Research generally looks at CBD in edibles and liquids, or smoked using traditional means.

It is not known what happens to CBD under vaping temperatures, if there are thermal degradants, or important chemical reactions between CBD and other ingredients in vaping liquids or other drugs.

A recent lung tissue study found concerning results about inhaling CBD while using steroids. CBD helps reduce inflammation, but “acts as an antagonist with steroids, overriding the anti-inflammatory potential of steroids when used in combination.”

Last year Vice reported on public health warnings in North Carolina after 90 people became sick with headaches, nausea, hallucinations and other health problems after vaping CBD products. Adulterants appear to have been the problem, and Vice noted that vape oils are poorly regulated and sometimes contain chemicals that “when heated in a vape and inhaled, can cause serious lung irritation.”

A recent study on the quality of CBD liquids used in e-cigarettes is also concerning, finding that “the quality control of manufacturers and the relative safety of these products is uncertain.”

An AP investigation last month found that in lab tests on 30 CBD vape products, ten samples contained synthetic marijuana such as K2 or spice, while others had no CBD at all.

Some states with legalized cannabis do require testing of CBD vapes. But it’s not clear what to test for, and even the lab methods for testing have yet to be validated. It is also not known which cutting agents, adulterants and contaminants should be cause for concern. Lung tissue is fragile, vulnerable in ways the GI tract is not, and not well studied. So testing regimes may ultimately require information we currently lack.

Oversight of cannabis testing is limited. California’s Sequoia Analytical Labs was found to be falsifying lab results last year. Plus, many CBD vapes come from the gray or black markets, or are home-brewed, making attempts at quality control irrelevant. As a result, CBD vaping safety is an open question, assuming it is even possible to make a safe CBD vape.

Fortunately, new research may help. Researchers are testing vaporized cannabis extracts on rats. This will allow for studying the effects of THC and CBD in animal models in a way that closely mimics human behavior.

Such information is urgently needed. Animal studies on vaping are raising concerns about lung cancer risk, but such research may not be representative of how humans vape, limiting their value.

There is ongoing debate on what CBD is good for. And now we also have to consider how CBD should be administered. It may be possible to create a low-risk CBD vape product. But at present we don’t really know how to do it.

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.

The information in this column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Should Opioids Be Sold Over-The-Counter?

By Crystal Lindell, PNN Columnist

There are currently two opioid crises going on. Too many people are dying of overdoses and too many chronic pain patients are being denied the medications they need to function. 

I have a solution for both — make hydrocodone and other opioid medications available over-the-counter without a prescription.

Yes, I know the idea of adding more opioids to the overdose crisis sounds counter-intuitive. But hear me out, because this is the solution that both pain patients and illegal drug users should be fighting for.

In short, it would make it much easier for pain patients to treat their symptoms, while also providing a safe supply for those dealing with addiction.

But isn’t hydrocodone dangerous and addictive? Well yes, it is. But so is alcohol and so is tobacco. So let’s compare.

According to the CDC, cigarette smoking is responsible for more than 480,000 deaths annually in the United States, including more than 41,000 deaths resulting from secondhand smoke. As for alcohol, the CDC says it causes about 88,000 deaths per year.

How does that compare to hydrocodone? According to the DEA, of the 1,826 hydrocodone exposures reported to poison control centers in 2016, only two resulted in deaths. That’s right, two.

Another report by the CDC estimates there were 3,199 overdose deaths involving hydrocodone in 2016. But many of those deaths involved other drugs and we don’t know whether the pills were prescribed or not.  

Both estimates pale in comparison to the number of people dying from alcohol and tobacco.  

Yes, the number of deaths might go up if hydrocodone is sold over-the-counter. However, if you factor in how many lives we could save, we would come out far ahead.  

And you know what? The acetaminophen found in hydrocodone products like Vicodin could cause an overdose before the hydrocodone does.  

“The scientifically and medically accepted amount to produce a fatal overdose of hydrocodone is 90 mg. Thus, 18 (5mg) Vicodin pills can lead to an overdose,” explains an addiction recovery website.

“This already puts an individual far above the liver’s tolerance of acetaminophen at 5,400 mg, meaning an individual would experience two separate overdoses if they managed to consume this many pills.”  

Although opioid tolerance can greatly impact how much would be needed to cause an overdose, the fact remains that the acetaminophen might actually be the most dangerous part of the medication. The solution for that? Sell hydrocodone over-the-counter without the acetaminophen.   

Patients Turning to Street Drugs

How do we save lives by giving people more access to drugs? To answer that you have to understand how people are actually dying as a result of the opioid crisis.  

Here’s a hint: it’s not usually caused by hydrocodone. 

First, the misguided fight against the opioid epidemic has led to many doctors refusing to prescribe any opioid medications. Unfortunately, taking medications away from people who need them to function doesn’t somehow result in them magically fighting through the pain. Instead, it just pushes them to take more acetaminophen or some dangerous illegal drug that we’re trying to curb.  

When that happens, people are left to find illegal alternatives — and what they discover is that heroin and illicit fentanyl are actually cheaper than hydrocodone sold on the black market.  

Our system of prohibition is forcing pain patients and illegal drug users to turn to street drugs. We are doing something wrong when it’s easier and cheaper to take heroin or fentanyl than it is to take hydrocodone.  

Making hydrocodone over-the-counter would create a safe supply and would undoubtedly save a lot of lives. It would also have the added benefit of saving patients a lot of money on doctor visits.   

We are at a point when the war on drugs is doing more harm than good for everyone. It’s time for us to consider more radical solutions to these issues. And making hydrocodone available over-the-counter should be at the top of that list.  

Decriminalize Opioids

Thankfully, the country seems to be moving in this direction somewhat. Cannabis is being legalized recreationally, as everyone realizes how pointless marijuana prohibition is. And just this month, Democratic Presidential Candidate Andrew Yang announced his proposal to decriminalize opioids.  

“We need to decriminalize the possession and use of small amounts of opioids,” Yang says on his website. “Other countries, such as Portugal, have done so, and have seen treatment go up and drug deaths and addiction go down. When caught with a small quantity of any opioid, our justice system should err on the side of providing treatment.” 

No, Yang is not likely to win. And no, his proposal doesn’t go far enough. But it’s a start — and will hopefully start to shift the conversation.  

Is there anything we can do as patients to help this cause? Honestly, I believe there is. I constantly see pain patients and advocacy groups post disparaging comments about people who use drugs illegally. I understand why it’s easy to blame them for the crackdown on opioids. But they aren’t the ones who put the new regulations in place — for that you can blame the CDC, DEA and FDA.  

Instead of fighting illegal users, we should be trying to work with them as part of a common cause — decriminalization and legalization. It’s a fight we can all get behind.  We can post about that stance online and we can tell our loved ones why it’s important to us. We can also tell our elected officials. You can reach your federal representatives in the House here, and in the Senate here.

If we all take up this cause together, there is real hope we can make progress.  

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile Ehlers Danlos syndrome. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Discovery of Brain Protein Could Lead to New Chronic Pain Treatments

By Pat Anson, PNN Editor

Researchers have identified a protein in the brain that appears to play a prominent role in the maintenance of long-term pain -- a discovery that could lead to new treatments that stop short-term acute pain from progressing to chronic pain.

The protein RGS4 (Regulator of G protein signaling 4) is found in brain circuits that process pathological pain, mood and motivation.

"Our research reveals that RGS4 actions contribute to the transition from acute and sub-acute pain to pathological pain states and to the maintenance of pain," says Venetia Zachariou, PhD, a professor in The Friedman Brain Institute at the Icahn School of Medicine at Mount Sinai in New York City.

"Because chronic pain states affect numerous neurochemical processes and single-target drugs are unlikely to work, it's exciting to have discovered a multifunctional protein that can be targeted to disrupt the maintenance of pain."

In studies on genetically modified mice, Zachariou and her colleagues found that genetic inactivation of RGS4 did not affect acute pain, but it promoted recovery from nerve injuries, chemotherapy-induced neuropathy and peripheral inflammation. Mice lacking RGS4 developed all the expected symptoms of a nerve injury, but recovered within 3 weeks and returned to physical activity.

The transition from acute to chronic pain is accompanied by numerous adaptations in immune, glial and neuronal cells, many of which are still not well understood. Chronic pain patients experience a number of debilitating symptoms besides pain, such as sensory deficits, depression and loss of motivation

Researchers believe future drugs that target RGS4 could prevent acute pain from transitioning to chronic pain. Currently available medications for chronic pain only treat the symptoms – not the underlying condition – and have major side effects.

Dr. Zachariou's laboratory is conducting further investigation into the actions of RGS4 in the spinal cord and mood-regulating areas of the brain to better understand the mechanism by which the protein affects sensory and pain symptoms.

Their findings are published online in The Journal of Neuroscience.

The New Norm for Chronic Pain Patients

By Rochelle Odell, PNN Columnist 

Come the new year, I will start my 28th year battling Complex Regional Pain Syndrome (CRPS). Like so many high impact pain patients, I have been experiencing a pain flare that isn't improving and prevents me from doing many tasks. I am praying it will get better and not become my new norm.  

I have been a palliative care patient for a couple of months now. Palliative care is not what many people think it is. My meds did not get increased and I still live at home. A home health RN visits me twice a week, takes my vital signs, asks how I am doing, how is my pain, and what doctor do I see next.  

I was evaluated this time last year for Transitional Care Management or TCM. It’s usually for patients getting out of the hospital and is short term -- only two to three months at the most. A medical doctor evaluated me and told me I was “high functioning” but needed assistance. High functioning? I have no help and only have me to depend on. I have to function to some degree just to survive. 

My RN tells me palliative care is meant to help patients be as comfortable as possible. They used to be able to give their patients pain meds, but now all they can give is Toradol, a non-steroidal anti-inflammatory drug, which does me no good because I am deathly allergic to NSAID's and aspirin. She is compassionate and caring and says what is happening to me and others in pain is "Just not right." I have to agree with her. 

Perhaps part of this new norm is reading so much negativity coming from our not so illustrious leaders in DC, along with blurbs from the CDC and the FDA. To me it appears to be getting worse as opposed to getting better.  

Is my increased pain clouding what I am reading? I don't believe so. Many of us suffering from high impact pain -- about 20 million Americans – are unable to get opioid medication. Even those suffering from life ending cancer are being turned away. That is nothing but plain cruelty. 

There is a core group of pain patients, probably numbering a few thousand, that is trying to change things. We call and write our elected officials and various government offices that have deemed it their duty to destroy our lives piece by piece.

Those that are physically able can attend a Don't Punish Pain Rally. There is another DPP rally coming up October 16. I have only been able to attend one rally. It's hard when one is in extreme pain and with limited funds to be able to travel to the rallies.  

Why Are We Being Treated This Way?

What is happening to us? Why are our physicians, those trained to treat and care for us, turning their backs on us? Why are we being shunned? Why are we being treated like we did something wrong?  

Why are people who abuse drugs being treated with compassion and care but not us? They hurt their families, they steal, they destroy their bodies, they seemingly don't care. We don't do any of that. Our pain is caused by diseases we never asked for. We care, we want to live and we want to participate in life.   

They get clean needles, clean rooms to shoot up in, free Narcan, and in Canada they are giving Dilaudid (hydromorphone) to those who abuse drugs. Dilaudid is an opioid used for treating severe pain. I was on Dilaudid three years ago. Not anymore.  

I just read about a county in England that is going to provide medical grade heroin twice a day to drug addicts. Why? The police are hoping it will lower crime in the area. I bet they have lines form they never expected.  

So now those who abuse are getting free heroin. Yet pain patients are kicked to the curb. How can physicians care for one who abuses their body but refuse to treat a human being suffering from intractable pain? I don't mean to sound so cold when it comes to those who abuse, but people in pain are suffering unrelenting pain because of them.   

If we ask for meds, ask for referrals or refuse a treatment we know will have adverse effects, we are accused of being non-compliant and dropped by our doctors. I believe the loss of compassion from our physicians is why many of us are having these unexplained pain flares that are becoming our new norm.  

I have been reading on social media that patients on opioids who move or are dropped are finding it impossible to get a new primary care physician. I saw my PCP last week and asked her about it. She emphatically told me "they" would not accept new patients who are on or had been on opioids. I was afraid to ask who “they” were, but am assuming it's all or most of the doctors in this area. 

I am sorry for all my friends in pain and for those I don't know who are in pain. I am sorry we are being treated like addicts. That those in healthcare would turn a blind eye to us. My heart breaks for those who feel the only solution is to take their life to end the pain. That is so wrong. Human beings are being pushed to that point by those elected to represent us and those in healthcare who are supposed to care but don't. I am so very sorry. 

Rochelle Odell lives in California.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

This column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

FDA Approves New Lilly Migraine Drug

By Pat Anson, PNN Editor

The U.S. Food and Drug Administration has approved Eli Lilly’s Reyvow (lasmiditan) for the treatment of migraine with or without aura. Reyvow is the first migraine treatment that acts by binding to serotonin receptors in the brain and depressing central nervous system activity. 

“Reyvow is a new option for the acute treatment of migraine, a painful condition that affects one in seven Americans,” Nick Kozauer, MD, acting deputy director of the FDA’s Division of Neurology Products, said in a statement. “We know that the migraine community is keenly interested in additional treatment options, and we remain committed to continuing to work with stakeholders to promote the development of new therapies for the acute and preventive treatment of migraine.”  

Migraine affects a billion people worldwide and about 36 million adults in the United States, according to the American Migraine Foundation. In addition to headache pain and nausea, migraine can cause blurriness, light sensitivity and visual disturbances known as aura.

The effectiveness of Reyvow tablets was demonstrated in two double-blind, placebo-controlled studies involving nearly 3,200 patients experiencing a migraine attack. In one study, only about 32% of patients receiving 200mg of Reyvow were pain free after two hours, but that compares to 15% taking a placebo — enough to be considered statistically significant.

"As a physician who specializes in the treatment of migraine and headache disorders, I commonly treat patients who are looking for acute treatment options that offer the chance for pain freedom during migraine attacks. This approval is especially significant because migraine pain is so often severe and incapacitating," said Jan Brandes, MD, a neurology professor at Vanderbilt University and paid consultant to Lilly.

The most common side effects for patients in the Reyvow clinical trials were dizziness, fatigue, a burning or prickling sensation in the skin (paresthesia), and sedation.  An FDA warning label will caution patients not to drive or operate machinery for at least eight hours after taking Reyvow. The drug should also not be taken with alcohol or other serotonin depressants.

Reyvow is not approved for the preventive treatment of migraine. Lilly did not say when Reyvow would be available or how much it would cost.

In recent years, the FDA has approved several new migraine therapies, including injectable drugs to prevent migraine and neuromodulation devices that use electrical pulses to disrupt pain signals.

Migraine can be triggered by various factors including stress, hormonal changes, bright or flashing lights, lack of food or sleep, and diet. Women are three times more likely to suffer from migraine than men.

Feds Warn About Rapid Opioid Tapers

By Pat Anson, PNN Editor

Federal health officials are once again urging doctors not to rapidly decrease or abruptly stop prescribing opioid medication to chronic pain patients.

In an editorial published in the Journal of the American Medical Association (JAMA), three federal health officials warn that sudden opioid tapering significantly increases the risk of harm to patients, resulting in increased hospitalizations and emergency room visits.

“There are concerning reports of patients having opioid therapy discontinued abruptly and of clinicians being unwilling to accept new patients who are receiving opioids for chronic pain, which may leave patients at risk for abrupt discontinuation and withdrawal symptoms,” the editorial warns.

The editorial was written by Deborah Dowell, MD, of the Centers for Disease Control and Prevention, Wilson Compton, MD, of the National Institute on Drug Abuse, and Brett Girior, MD, of the U.S. Public Health Service. Dowell is one of the co-authors of the CDC’s controversial opioid guideline, which has been widely used as an excuse by doctors, insurers and pharmacies to impose mandatory limits on prescribing.  

Even before its release in March 2016, pain patients and advocates warned the CDC guideline would result in rapid tapering, patient abandonment and suicide.

But not until April of this year – after three years of needless deaths and suffering -- did the FDA and CDC start urging doctors to be more cautious in their tapering.

It then took another six months for the Department of Health and Human Services (HHS) to produce a 6-page guide for doctors on how to taper patients.

“The HHS guide and current guidelines emphasize that tapering should be individualized and should ideally proceed slowly enough to minimize opioid withdrawal symptoms and signs. Physical dependence occurs as early as a few days after consistent opioid use, and when opioids have been prescribed continuously for longer than a few days, sudden discontinuation may precipitate significant opioid withdrawal,” the JAMA editorial warns.

The HHS tapering guide urges doctors not to dismiss pain patients and to share decision making with them when developing a taper program.

“If the current opioid regimen does not put the patient at imminent risk, tapering does not need to occur immediately. Take time to obtain patient buy-in,” the guideline cautions. “There are serious risks to non-collaborative tapering in physically dependent patients, including acute withdrawal, pain exacerbation, anxiety, depression, suicidal ideation, self-harm, ruptured trust, and patients seeking opioids from high-risk sources.”

The guide suggests tapers of 5% to 20% every four weeks, although slow tapers of 10% a month may be appropriate for patients taking opioids for more than a year.

A recent study of tapering in Vermont found only 5 percent of patients had a tapering period longer than 90 days. The vast majority (86%) were rapidly tapered in 21 days or less, including about half who were cut off from opioids without any tapering. Many of those patients were hospitalized for an “opioid-related adverse event” -- a medical code that can mean anything from severe withdrawal symptoms to acute respiratory failure.

Another recent study at a Seattle pain clinic found that tapered patients had an unusually high death rate, with some dying from suspected overdoses.

Meanwhile, not a single word of the CDC opioid guideline has changed since federal health officials finally acknowledged it was harming patients and needed clarification.

Experimental Drug Rebuilds Cartilage in Knee Osteoarthritis Patients

By Pat Anson, PNN Editor

An experimental treatment shows promise in slowing the progression of knee osteoarthritis by increasing the thickness of cartilage in the knee joint, according to results of an early clinical trial published in the Journal of the American Medical Association (JAMA).

Researchers at the University of Maryland School of Medicine gave 549 volunteers with knee osteoarthritis injections of the drug sprifermin or a placebo. Sprifermin is a disease modifying drug that stimulated the production of cartilage-producing cells in animal studies.

The researchers found that participants who received a 100 microgram dose of sprifermin either twice or once yearly experienced a statistically significant but slight gain in joint cartilage thickness after two years.  Those given smaller doses had smaller gains in cartilage that were not statistically or clinically significant.

"While the increase in cartilage thickness is a positive sign, we do not know at this point whether it has any clinical significance," said lead investigator Marc Hochberg, MD, a Professor of Medicine at UMSOM. "It is not known whether those who experience increased cartilage thickness over time will be able to avoid or delay knee replacement surgery."

Interestingly, patients treated with a high dose of sprifermin did not experience any significant improvement in their arthritis symptoms – such as pain and stiffness -- compared to those given lower doses or placebo injections.

All of the injections were stopped after 18 months. The Phase 2 study is designed to continue for a total of five years and future analyses of the findings are planned.

About 10 percent of Americans over age 60 have knee osteoarthritis, a progressive condition caused by the breakdown of joint cartilage. Knee osteoarthritis causes pain, physical disability, lower quality of life and is associated with early death and cardiovascular problems.

The pain is usually treated with over-the-counter pain relievers, anti-inflammatory drugs, steroid injections, and sometimes surgery. No disease-modifying osteoarthritis drugs have been approved in the United States or Europe.

Arthroscopic and knee replacement surgeries are increasingly being used to treat knee osteoarthritis. But a number of recent studies have found the arthroscopic surgery does not relieve knee pain any better than physical therapy or over-the-counter pain relievers. Researchers have also found that about a third of patients who had knee replacement surgery continued to have pain after the procedure.

Health Canada Supports Use of Prescription Heroin to Treat Addiction

By Pat Anson, PNN Editor

Canada’s national health agency -- Health Canada – is supporting efforts to expand the use of pharmaceutical-grade heroin in treating opioid addiction.

A treatment center in Vancouver, BC is currently the only clinic in North America that provides diacetylmorphine -- prescription heroin – to opioid addicts. Other clinics may soon follow, after last month’s publication of the first clinical guideline for using injectable diacetylmorphine and hydromorphone to treat people with severe opioid use disorder.

Heroin is classified as a Schedule I controlled substance in the United States, making it illegal to prescribe for any purpose. But pharmaceutical grade heroin is legal in Canada, UK and several other European countries, where studies have found it is an effective way of treating — or at least managing — opioid addiction.

In a statement to PNN, Health Canada said it supports using diacetylmorphine to help create a safe drug supply for addicts who use dangerous street drugs and have failed at other forms of treatment.

“Many stakeholders have been calling for a secure and predictable supply of pharmaceutical-grade opioids as an alternative to the contaminated illegal drug supply. Studies have shown that prescription opioids, such as injectable hydromorphone and diacetylmorphine (prescription-grade heroin), have been successful in helping to stabilize and support the health of some patients with opioid use disorder,” said Jennifer Novak, Executive Director of Health Canada’s Opioid Response Team.

“Health Canada has taken steps towards this objective, including making prescription opioids used in the treatment of severe opioid disorder more easily accessible to healthcare practitioners, reducing regulatory barriers, funding guidelines for opioid use disorder treatment, and supporting safe supply pilot projects in British Columbia.”

Pain patients and their advocates bristle at Health Canada’s willingness to liberalize the use of heroin to treat addiction – while it supports policies that limit access to opioid pain medication.

"While it's necessary to make every effort to keep those suffering from substance abuse alive, why has this come at the cost of pain patients' lives? Health Canada blamed these patients for overdose deaths they played no part in and consequently they can no longer access their necessary medicine. The most severe have been sent spiraling back into more suffering, disability, suicide, and to purchase street drugs out of sheer desperation,” says Ann Marie Gaudon, a PNN columnist, pain patient and advocate. 

“Health Canada acts like a hero trying to save those addicted while simultaneously refusing to admit that they have indeed added to the death toll by adding pain patients. Where is their help? It is nowhere to be seen in the homes of Canada." 

Nearly 1 in 5 Canadians suffer from chronic pain and Canada has the second highest rate of opioid prescribing in the world.   

In an effort to reduce the supply of prescription opioids, Canada adopted an opioid guideline in 2017 that is very similar to one released by the U.S. Centers for Disease Control and Prevention a year earlier. Both guidelines have had a negligible impact on the overdose rate, while pain patients on both sides of the border lost access to opioid medication or had their doses reduced to ineffective levels.

“Health Canada recognizes that some people who live with chronic pain have been unable to access opioid medications when needed to manage their pain,” Novak said. “We know that opioid medications are an important tool in the management of pain for some Canadians and are working with stakeholders and partners to promote opioid prescribing practices that balance the benefits and harms of these medications based on the individual needs of each patient.” 

Asked what Health Canada is doing to improve healthcare for pain patients, Novak said the agency was providing $3 million in funding to improve education in pain management for physicians, nurses, pharmacists and social workers.  

Three million dollars is a tiny fraction of the $253 billion spent on healthcare in Canada in 2018.

"It's a pittance but the very sad part is that it's all going right back into the same people and programs that made this whole mess to begin with,” says Gaudon. “Nothing new, no help on the horizon for those whose lives have been shattered. They talk as if they are doing something but they truly are not. It's pure rubbish."

The Complex Relationship Between Alcohol and Pain

(Editor’s note: A recent PNN survey found that nearly 20% of chronic pain patients used alcohol for pain relief. Many do so because they lost access to opioid medication. The National Institute on Alcohol Abuse and Alcoholism (NIAAA) recently published this article on pain and alcohol, and invited PNN to republish it.)

The relationship between alcohol and pain is a complicated one. It is a common belief that alcohol dulls pain, yet research shows that sometimes alcohol can make pain worse.

Understanding the complex relationship between alcohol and pain is an important area of research for NIAAA. In 2016, about 20 percent of adults (50 million people) in the United States had chronic pain, defined as pain most days in the previous 6 months. Recent studies suggest that around 1 in 4 adults in chronic pain reports self-medicating with alcohol, and 43–73 percent of people with alcohol use disorder (AUD) report experiencing chronic pain.

An improved understanding of the effects of alcohol on pain, the role of pain in alcohol misuse, and potential interactions between alcohol and opioids during pain treatment hopefully will improve treatment outcomes for patients in pain.

Alcohol has been found to alleviate physical pain, but it requires doses consistent with binge drinking to do so. Binge drinking is defined as drinking enough to bring blood alcohol concentration (BAC) levels to 0.08 percent, which typically occurs after 4 drinks for women and 5 drinks for men in about 2 hours.

A recent analysis of the findings from 18 studies on alcohol and pain concluded that a BAC of 0.08 percent produces a small increase in pain threshold and a reduction in pain intensity. These findings could help explain why some people with chronic pain drink excessively.

Unfortunately, reaching BAC levels this high also is associated with unintentional injuries, violence, traffic fatalities, and other consequences. And long-term excessive drinking makes physical pain worse. In a group of 30 men in treatment for AUD, sensitivity to pain increased early in abstinence.

People also sometimes use alcohol in an effort to cope with emotional pain. Unfortunately, as with physical pain, the temporary reprieve alcohol might offer gives way to an increase in emotional pain when the alcohol wears off.

Chronic alcohol misuse can lead to the emergence of a negative emotional state, known as hyperkatifeia, in between episodes of drinking. The resulting irritability, dysphoria, and anxiety fuel further alcohol use. As with physical pain, drinking alcohol to cope with emotional pain makes the situation worse. (For more information, see “Alcohol and ‘Deaths of Despair.’”)

Opioid analgesics commonly are prescribed to treat physical pain and often are misused to cope with emotional pain. Used separately, alcohol and opioids can cause overdose deaths by suppressing areas in the brain stem that control breathing. Using alcohol and opioids together amplifies the danger. Research suggests that alcohol plays a role in around 1 in 5 deaths from opioid overdoses.

Because the mechanisms by which alcohol and opioids reduce physical and emotional pain overlap, regular use of one drug diminishes the effects of the other. For instance, when researchers examined opioid pain medication use after abdominal surgery in more than 4,000 patients, they found that frequent alcohol consumption was associated with increased opioid use for pain control.

Similarly, in rats allowed to drink alcohol for 8 weeks, opioids became less effective at reducing physical pain. Withdrawal from opioids, like withdrawal from alcohol, leads to the emotional misery of hyperkatifeia.

As part of the National Institutes of Health Helping to End Addiction Long-Term (HEAL) initiative, NIAAA is encouraging studies to develop and validate biomarkers of comorbid alcohol misuse and chronic pain and that address alcohol misuse in the context of chronic pain management.

NIAAA also encourages research on the impact of alcohol and sleep disturbances on pain through a new funding opportunity. These efforts, among others, should shed light on how alcohol affects pain and vice versa and could have implications for both treating AUD and managing chronic pain.

Insurer’s ‘Internal Policy’ Prevents Patients from Getting Needed Healthcare

By Barby Ingle, PNN Columnist

Patients, caregivers and providers have been fighting with insurance companies for years over step therapy practices, prior authorization delays and changes in specialty tier medications. If a claim is turned down by a payer, there is usually a way to appeal – such as a peer-to-peer review between a provider and a physician at the insurance company.

An insurance policy has come to my attention which ends peer-to-peer reviews and ultimately is a way to limit access to healthcare and avoid paying for certain treatments. Blue Cross Blue Shield of Kansas no longer allows physicians to speak directly to their medical director.

A peer-to-peer review occurs after receiving an authorization denial. Often the first denial is by a claims adjuster, who is usually not a medical professional. When that happens, the treating provider may request to speak with the insurer’s medical director to discuss the rationale for the denial. This process is sometimes referred to as a “doctor to doctor" appeal.  

Providers typically have a time frame where a peer-to-peer request must be made. For inpatient and pre-service requests, it is typically 5 business days. They have 60 days to complete the appeal from the date of denial.

Peer-to-peer requests are often not granted because they were made too late or there is insufficient clinical documentation. But they’re worth trying.

A Kansas provider recently requested a peer-to-peer meeting and received this email response from a representative of Blue Cross Blue Shield (BCBS) of Kansas:

“We used to have in our policy that we allowed requests for peer-to-peer reviews with our Medical Directors. We took that out a few years back and no longer give our providers that option. That is our internal policy.”

The email suggests this “internal policy” is not a known public policy or practice by BCBS of Kansas.

How are patients and providers able to get proper and timely care after an authorization denial if they are not able to request a peer-to-peer review?  I can see how this “internal policy” does save the insurer money over the short-term. But long term, not allowing physicians to speak directly to the medical director leads to delays and denials of care.

“Physicians are frustrated. Now this policy from BCBS of Kansas.  It is much easier to deny a piece of paper than a real human being.” says Gayle Taylor-Ford, a Kansas pain patient, provider and board member of iPain.

Step therapy and prior authorization policies are limiting access to healthcare for patients around the country. A recent study found that about 66% of prescriptions that get rejected at the pharmacy require prior authorization. Further complicating the situation is when a prior authorization is imposed, only 29% of patients end up with the originally prescribed treatment — and 40% end up abandoning therapy altogether!

This causes frustration, delay in care, depression, and poor adherence to treatment plans. The health of patients who don’t get the medication that could best treat their condition -- or who don’t get any therapy at all -- often gets worse. That leads to an increase in doctor and emergency room visits — and higher healthcare costs.

I wish we knew why BCBS of Kansas made this policy change. BCBS companies in other states still allow peer-to-peer reviews. Why is this a non-consistent policy and why is it even allowed in Kansas?

(Editor’s note: PNN asked for a comment from BCBS of Kansas and received this reply from a spokesperson: “While we appreciate you reaching out for comment, we respectfully decline to offer a response to the story.”)

There are already challenges in the peer-to-peer appeal process, as oncologist Rick Boulay, MD, described in KevinMD.com. Boulay wrote about his frustration getting cancer treatments approved when talking to the ‘insurance doctor’ who was supposed to be his peer.

“Most patients are unaware of this, but your physician is likely your biggest advocate when it comes to getting your care covered,” Boulay wrote. “At least weekly, and occasionally daily, insurance companies deny payment for some cancer treatment that I prescribe. In my career, I cannot think of a single aspect of the cancer care continuum that hasn’t been denied.”

At least Dr. Boulay was able to get peer-to-peer reviews and have some of those denials reversed. 

To deny our providers the ability to appeal is wrong. It’s just a new way to deny proper and timely access to healthcare. The fact that BCBS of Kansas is hiding its “internal policy” is also a sign that they know they are delaying and denying care that patients need.

It also raises a question. How many other insurance providers are doing the same thing?

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. 

This column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Has Vaping Hysteria Gone Too Far?

By Anna Maria Barry-Jester and Jenny Gold, Kaiser Health News

On Sept. 16, Tulare County in California announced the nation’s seventh death from vaping-related illness. Its advisory warned about “the dangerous effects of using electronic cigarettes, or e-cigarettes.”

As federal and state health officials struggle to identify what exactly is causing the deadly outbreak, vaping advocates are stepping into the void and crafting an alternative narrative that is being echoed broadly in online communities.

The people getting sick, according to their version of events, all vaped THC — the psychoactive ingredient in cannabis — using products bought on an illicit black market. They also contend federal officials have seized on the crisis to crack down on a nicotine vaping culture they don’t appreciate or understand, a culture proponents insist has helped them and millions of others quit smoking.

As of Oct. 1, the federal Centers for Disease Control and Prevention had identified more than 1,000 cases of vaping-related lung illness in 48 states. Eighteen people have died, including two in California. Of the 578 patients who have reported using specific products, most said they had vaped THC, but a significant portion — 17% — said they had used only nicotine.

CDC officials maintain they can’t identify one product or chemical culprit, and while they recently began emphasizing the risks of vaping THC, they continue to warn against any vape use at all.

Meanwhile, cities and states have responded with a divergent mix of warnings and bans. Michigan, New York and Rhode Island have moved to ban most flavored nicotine vaping products. The California Department of Public Health recently warned against all vaping devices, and the governor of Massachusetts issued a four-month ban on all vaping products.

The actions have sparked a backlash among hundreds of thousands of people who say they’ve been vaping for years without a problem. Compounding their distrust: the political calls to ban flavored nicotine products even though the vast majority of illnesses identified appear to involve people who were vaping THC.

They see a government out to quash nicotine vaping because its popularity with teens has caused a public outcry, ignoring the adults who find it a pleasing alternative to cigarettes. When it comes to vaping, they have stopped looking to the CDC for advice.

Debbye Saladine-Thompson is a registered nurse in Michigan who was a smoker for 32 years before she switched to vaping. She now manages the Michigan Facebook page for Consumer Advocates for Smoke-Free Alternatives Association (CASAA), a nonprofit that advocates for access to e-cigarettes and receives industry funding.

“I do not trust the CDC. Not anymore” Saladine-Thompson said. “I cannot trust an agency that says the product that I and so many people have been using for 10 years and hasn’t caused one death is now causing hundreds of illnesses. No, I do not believe that.”

Online vaping forums are roiling with accusatory messages suspicious of the government response. In Facebook groups, including one called ‘BLACK MARKET THC CARTRIDGES CAUSED THIS QUIT LYING ABOUT VAPOR PRODUCTS,’ vapers have expressed outrage over the bans on nicotine products while cigarettes remain readily available. They’re organizing phone calls to legislators and rallies at state capitols.

“We’re living and dying by these decisions,” said Kristin Noll-Marsh, the member coordinator for CASAA who moderates the group’s national Facebook group. “This vaping panic of 2019 is gonna go down in the history books as being like flat Earth, bloodletting and burning witches.”

CDC Messaging Criticized

Throughout the outbreak, the CDC has said that people who vape to quit smoking should not return to cigarettes. But the emphasis on all vaping devices drowns out that warning, said Dr. Michael Siegel, a professor at Boston University and proponent of e-cigarettes as a smoking cessation tool.

“In an outbreak investigation like this one, you have to be as specific as possible if you want people to listen. If you say ‘Just don’t vape,’ that’s not telling anyone anything they don’t already know.”

Many also are critical of the messaging used by the CDC, states and some media outlets, saying they are out of touch with vaping culture and its terminology. Public officials often use one word — e-cigarettes — to describe what to people who vape is a wide range of products with different names.

People who see headlines about illnesses linked to “e-cigarettes” may not know it applies to them, said Jim McDonald, a journalist with Vaping360, a consumer news site. “Cannabis vapers don’t use the term e-cigarettes. They never, never use that term.”

Even among e-cigarettes, a term many equate with nicotine delivery devices, people differentiate between cartridge-based devices like Juul and the handheld “mods,” which tend to be larger and produce more vapor. E-liquids can come prepackaged in ready-to-use form or can be mixed in stores or at home. Whether cannabis is legal and regulated also varies among states.

The problem with the alternative narrative, say doctors who are treating patients, is that it’s not clear whether only illicit THC is to blame. Dr. Dixie Harris, a critical care pulmonologist with Intermountain Healthcare in Utah, has been reporting five to seven cases a week for the past six weeks. While many patients have reported using illicit THC, she also has had patients who have fallen ill after using products purchased at licensed medical dispensaries in states where cannabis is regulated.

A new study looking at lung tissue samples from 17 patients found the damage resembled chemical burns and included two samples from people who fell ill before the outbreak. The findings cast doubt on a popular theory that vitamin E oil, which has been used as a thickening agent in THC oil, is the culprit.

The investigation is challenging on many fronts. Vaping — both legal and illicit, nicotine and cannabis — has exploded in the past few years with little regulation. There are hundreds of products, do-it-yourself kits and home brews. The potential culprits are many: popular flavorings in nicotine vapes never tested for inhalation. Oils used to dilute THC. Contaminants. Pesticides. Possible toxic residue from the containers themselves.

The CDC is grappling with a dearth of information. The process of alerting the many agencies and entities involved — doctors, hospitals, law enforcement, public health departments — has been slow.

Among 86 cases in Illinois and Wisconsin, where the outbreak first was identified and investigators are further along in their work, people reported using 234 different products involving both nicotine and cannabis, according to a report published last month. Those products, in turn, involved a variety of brands, numerous supply chains and packaging without listed ingredients.

Dr. Anne Schuchat, principal deputy director of the CDC, said the agency wasn’t narrowing the investigation only to cannabis, stressing it needed to “have an open mind” to understand the possible risks.

“Personally, with all the data that I’ve been seeing,” Schuchat said Friday, “I don’t know what ‘safe’ is right now.”

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