A Rising Storm: Preparing for Revised CDC Opioid Guideline

By Richard Lawhern, PNN Contributor

Last month, the U.S. Centers for Disease Control and Prevention announced that a revised draft of its 2016 guideline for prescribing opioid pain relievers would soon be posted in the Federal Register and be available for public comment for 60 days. For patients in pain, their caregivers and their doctors, CDC might as well have issued an invitation to a gunfight at the OK Corral.

Revisions to the CDC opioid guideline have been underway since 2019.  During this period, much has changed in public awareness about chronic pain and addiction. Much more may change in the coming year as the CDC finalizes its draft revisions.

1. Despite the 2019 CDC admission that the opioid guideline has been “misapplied” by many states, insurers and physicians as hard limits on opioid prescribing, the Department of Justice (DOJ) and Drug Enforcement Agency (DEA) have continued selectively targeting doctors for prosecution when they prescribe opioids at high doses. As a result, the number of physicians still willing to treat pain with opioid analgesics has dropped precipitously.  And many thousands of patients have been involuntarily tapered or withdrawn from opioid therapy. 

2. DOJ, state and local prosecutors have recently announced multi-billion dollar settlements with major pharmaceutical companies for false advertising and promoting opioid pain relievers.  However, a judge in Orange County, California threw out an opioid lawsuit against four Pharma companies. The Oklahoma Supreme Court also overturned a lower court verdict on appeal.  In both cases, judges found no evidence to establish that the use or advertising of opioid painkillers is a “public nuisance.”  These cases offer precedents that might overturn other settlements or deny other government lawsuits against pharmaceutical companies. 

3. Two physicians convicted of inappropriate prescribing have taken their appeals to the US Supreme Court. Their case will be heard in March. Prominent medical associations and law firms have submitted “Friend of the Court” (amicus curae) briefs, pointing out that there is presently no accepted “standard of practice” for prescription of opioids, against which to evaluate appropriateness. Thus, a presumption of physician good faith should prevail in the absence of conclusive evidence of intentional opioid misuse.  If accepted, this premise will significantly narrow the grounds under which a physician can be prosecuted by DEA or DOJ for inappropriate opioid prescribing.

4. On July 16, 2021, the Board of Scientific Counselors of the CDC National Center for Injury Prevention and Control met in an online session to consider the report of their appointed Opioid Workgroup (OWG) evaluating progress in revising the 2016 CDC opioid guidelines. The OWG report provided a top-level “sneak peak” into the content of the proposed revisions, without the supporting data or references used by five authors rewriting the guideline.  For patients and advocates, this peek revealed a little shop of horrors. The OWG voiced fundamental concerns for unsupported or incorrect assertions concerning underlying science and medical practice.  

The problems revealed six months ago have since been compounded in at least two ways. First, research has shown that the underlying rationale of the CDC guideline and the proposed revisions is grounded upon a concept that is best characterized as “junk science.” 

Much of the damage done by the 2016 CDC guideline was caused by daily dose recommendations based on morphine milligram equivalents (MME). However, MME is not a single metric or even the correct one to base decisions on. In fact, there are four different models for MME which generate significantly different estimates for the “equivalence” between various opioid medications. Likewise, a June 2021 FDA Workshop on MME research revealed significant  weaknesses in the methods and protocols from which these models were developed.

Finally, a recently published review of the clinical literature for opioids and chronic pain reveals a 15-to-1 range in minimum effective dose for opioids used in long term therapy for moderate to severe pain. Much of this range appears to be caused by genetic differences in key liver enzymes which metabolize opioids. The literature also reveals very low risks of addiction among pain patients actively managed on opioids. Many papers mistake “pseudo-addiction” for drug tolerance or addiction.

Conflict of Interest

There is also evidence that CDC violated its own internal standards for objectivity when it selected the writers of the opioid guideline and recent revisions. Dr. Roger Chou, one of the co-authors of the original and revised guideline, has an established history of collaboration with key figures in anti-opioid organizations. 

Moreover, as pointed out by the OWG, a disproportionate number of publications where Chou was a principal author were used as source research for the guidelines as published. Chou not only led research on opioid outcomes and contributed to writing the guidelines, he also sits on the Board of Scientific Counselors that appointed the OWG.  He was thus in a position to lobby actively for his own work as a national standard of care. This is a fundamental professional conflict of interest.

As we near the release of a revised draft CDC guideline, one central trend seems clear.  If the writers of this guideline insist on doubling down on the errors of their original effort in 2016 – as they apparently did in July 2021 – then it will be time to remove CDC from its oversight of the practice of pain medicine, perhaps in favor of FDA or the National Academies of Medicine. 

As an advocate for people in pain and their doctors, it is from this frame of reference that I will approach my reading of the Federal Register.  I’m going into the review process “loaded for bear.”  I hope patients and their physicians will join me.

Richard “Red” Lawhern, PhD, has for over 25 years volunteered as a patient advocate in online pain communities and a subject matter expert on public policy for medical opioids. Dr. Lawhern has written or co-authored over 150 papers and articles published in medical journals and mass media.

Only 1 in 7 Chronic Pain Patients Use Opioids

By Pat Anson, PNN Editor

Have you tried physical therapy? What about yoga or Tai Chi? Did massage help you feel better?

Just about everyone in chronic pain has been asked that by family members, friends, doctors and sometimes even complete strangers.  The questions are innocent enough and usually well-meaning, but they often imply that a pain sufferer hasn’t looked beyond opioids for pain relief.

A new study shows that most people with chronic pain make extensive use of non-opioids and other “alternative” pain treatments – and that it’s relatively rare for a patient to only use opioids for pain relief.

The findings, published in JAMA Network Open, are based on answers to the 2019 National Health Survey by nearly 32,000 U.S. adults with chronic pain. The 2019 survey was the first to ask people about their use of 11 pain management techniques during the previous three months.

It turns out most people with chronic pain (54.7%) only used non-opioid pain management. And nearly a third (30.2%) used no pain therapy whatsoever. The rest either used opioids alone (4.4%) or a combination of opioids with one or more alternative treatments (10.7%).

That means only about 1 in every 7 adults with chronic pain even use opioids – a startling number when you consider the constant harping from anti-opioid activists and public health officials about how opioids are “overprescribed” in the U.S.   

“This study found that adults with chronic pain in the US use a variety of pain management techniques, including opioids,” wrote lead author Cornelius Groenewald, MB, a pediatric anesthesiologist and associate professor at the University of Washington School of Medicine. “Nonpharmacologic and nonopioid pharmacologic therapies are preferred treatments for chronic pain, and it is encouraging to note that most adults with chronic pain use a combination of various nonopioid modalities for treatment.”

Alternative Chronic Pain Therapies Used in 2019

• 18.8% Physical Therapy

• 17.6% Massage

• 15.6% Meditation or Relaxation Techniques

• 11.6% Spinal Manipulation or Chiropractic Care

• 8.5% Yoga or Tai Chi

• 5.1% Pain Self-Management Workshops

•  3.8% Psychological or CBT Therapy

• 1.8% Peer Support Group      

Nearly 40% of chronic pain sufferers reported using other therapies that were not listed in the survey. That may include treatments such as cannabis, kratom, medical devices, acupuncture or even ice packs. It would be good to include more of those options in future surveys.

Groenewald and his colleagues were disappointed that so few people used psychological techniques such as cognitive behavioral therapy (CBT), which was the only alternative pain therapy that they said was “underused.”   

The researchers found that complementary, psychological or psychotherapeutic therapies were more likely to be used by younger adults, females and people with more education. Adults using physical, occupational or rehabilitative therapies were more likely to be older, female, highly educated and have medical insurance.

A Disabled Activist Speaks Out About Feeling ‘Disposable’

By Rachel Scheirer, Kaiser Health News

In early January, one of the country’s top public health officials went on national television and delivered what she called “really encouraging news” on covid-19: A recent study showed that more than three-fourths of fatalities from the omicron variant of the virus occurred among people with several other medical conditions.

“These are people who were unwell to begin with,” said Dr. Rochelle Walensky, director of the Centers for Disease Control and Prevention.

Walensky’s remarks infuriated Americans with disabilities, who say the pandemic has highlighted how the medical establishment — and society at large — treats their lives as expendable. Among those leading the protest was San Franciscan Alice Wong, an activist who took to Twitter to denounce Walensky’s comments as “ableism.” Walensky later apologized.

Wong, 47, moves and breathes with the aid of a power wheelchair and a ventilator because of a genetic neuromuscular condition. Unable to walk from around age 7, she took refuge in science fiction and its stories of mutants and misunderstood minorities.

Her awakening as an activist happened in 1993, when she was in college in Indiana, where she grew up. Indiana’s Medicaid program had paid for attendants who enabled Wong to live independently for the first time, but state cuts forced her to switch schools and move back in with her parents.

Wong relocated to the Bay Area for graduate school, choosing a state that would help her cover the cost of hiring personal care attendants. She has since advocated for better public health benefits for people who are poor, sick, or older or have disabilities.

Eddie Hernandez for KHN

The founder of the Disability Visibility Project, which collects oral histories of Americans with disabilities in conjunction with StoryCorps, Wong has spoken and written about how covid and its unparalleled disruption of lives and institutions have underscored challenges that disabled people have always had to live with. She has exhorted others with disabilities to dive into the political fray, rallying them through her podcast, Twitter accounts with tens of thousands of followers, and a nonpartisan online movement called #CriptheVote.

Wong is nocturnal — she typically starts working at her computer around 9 p.m. On a recent evening, she spoke with KHN via Zoom from her condo in the city’s Mission District, where she lives with her parents, immigrants from Hong Kong, and her pet snail, Augustus. The interview has been edited for length and clarity.

Q: Why do you often refer to people with disabilities as oracles?

Disabled people have always lived on the margins. And people on the margins really notice what’s going on, having to navigate through systems and institutions, not being understood. When the pandemic first hit, the public was up in arms about adjusting to life at home — the isolation, the lack of access. These are things that many disabled and chronically ill people had experienced. Disabled people had been trying forever to advocate for online learning, for accommodations in the workplace. The response was: “Oh, we don’t have the resources. It’s just not possible.”

But with the majority inconvenienced, it happened. Suddenly people actually had to think about access, flexibility. That is ableism, where you don’t think disabled people exist, you don’t think sick people exist.

Q: Have you noticed that kind of thinking more since the pandemic began?

Well, yes, in the way our leaders talk about the risks, the mortality, about people with severe illnesses, as if they’re a write-off. I am so tired of having to assert myself. What kind of world is this where we have to defend our humanity? What is valued in our society? Clearly, someone who can walk and talk and has zero comorbidities. It is an ideology, just like white supremacy. All our systems are centered around it. And so many people are discovering that they’re not believed by their doctors, and this is something that a lot of disabled and sick people have long experienced.

We want to believe in this mythology that everybody’s equal. My critique is not a personal attack against Dr. Walensky; it’s about these institutions that historically devalued and excluded people. We’re just trying to say, “Your messaging is incredibly harmful; your decisions are incredibly harmful.”

Q: Which decisions?

The overemphasis on vaccinations versus other mitigation methods. That is very harmful because people still don’t realize, yeah, there are people with chronic illnesses who are immunocompromised and have other chronic conditions who cannot get vaccinated. And this back and forth, it’s not strong or consistent about mask mandates.

With omicron, there is this huge pressure to reopen schools, to reopen businesses. Why don’t we have free tests and free masks? You’re not reaching the poorest and the most vulnerable who need these things and can’t afford them.

Q: How has your life changed during the pandemic?

For the last two years, I have not been outside except to get my vaccinations.

Q: Because you’re so high-risk?

Yeah. I have delayed so many things for my own health. For example, physiotherapy. I don’t get lab tests. I’ve not been weighed in over two years, which is a big deal for me because I should be monitoring my weight. These are things I’ve put on hold. I don’t see myself going in to see my doctor any time this year. Everything’s been online — it’s in a holding pattern.

How long can I take this? I really don’t know. Things might get better, or they might get worse. So many things disabled people have been saying have been dismissed, and that’s been very disheartening.

Q: What kinds of things?

For example, in California, it was almost this time last year when they removed the third tier for covid vaccine priority. I was really looking forward to getting vaccinated. I was thinking for sure that I was part of a high-risk group, that I’d be prioritized. And then the governor announced that he was eliminating the third tier that I was a part of in favor of an age-based system. For young people who are high-risk, they’re screwed. It just made me so angry.

These kinds of decisions and values and messages are saying that certain people are disposable. They’re saying I’m disposable. No matter what I produce, what value I bring, it doesn’t matter, because on paper I have all these comorbidities and I take up resources. This is wrong, it’s not equity, and it’s not justice. It took a huge community-based effort last year to get the state to backtrack. We’re saying, “Hey we’re here, we exist, we matter just as much as anyone else.”

Q: Do you think there’s any way this pandemic has been positive for disabled people?

I hope so. There’s been a lot of mutual aid efforts, you know, people helping each other. People sharing information. People organizing online. Because we can’t wait for the state. These are our lives on the line. Things were a little more accessible in the last two years, and I say a little because a lot of universities and workplaces are going backward now. They’re doing away with a lot of the hybrid methods that really gave disabled people a chance to flourish.

Q: You mean they’re undoing things that helped level the playing field?

Exactly. People who are high-risk have to make very difficult choices now. That’s really unfortunate. I mean, what is the point of this if not to learn, to evolve? To create a new normal. I can’t really see that yet. But I still have some hope.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Report Warns of Million More Opioid Overdose Deaths

By Pat Anson, PNN Editor

A new report is warning that over a million more people will die of opioid overdoses in the U.S. and Canada by the end of the decade unless public health policies are prioritized to treat opioid addiction and marketing by pharmaceutical companies is prohibited.

“Unrestrained profit-seeking and regulatory failure instigated the opioid crisis 25 years ago, and since then, little has been done to stop it,” says Keith Humphreys, PhD, a Stanford psychiatry professor who chaired the Stanford-Lancet Commission on the North American Opioid Crisis. “Pharma companies are all being sued, and they deserve to be sued, but we have to remember they exploited weaknesses in our health care regulatory system that are still there.”

The commission’s report, published in The Lancet medical journal, projects that from 2020 to 2029, opioid deaths in the U.S. will reach 1.22 million if no action is taken.

The Stanford-Lancet commission lays most of the blame for the North American opioid crisis on the pharmaceutical industry, particularly Purdue Pharma’s heavy-handed promotion of OxyContin, as well as lax regulation by the Food and Drug Administration. The report calls for a ban on all direct-to-consumer drug advertising and for an end to pharmaceutical funding of continuing medical education programs.

The commission’s 50-page report was prepared by a panel of academics, clinicians and policymakers, including several longtime critics of opioid prescribing practices. They include Drs. Anna Lembke and David Juurlink, who are board members of the anti-opioid activist group Physicians for Responsible Opioid Prescribing (PROP), and Erin Krebs, MD, a researcher who hosted a lecture series on opioid prescribing for the Steve Rummler Hope Foundation, which lobbies against the use of opioids. The Rummler foundation is the fiscal sponsor of PROP.

Humphreys is also a frequent critic of opioid prescribing. In 2018, he co-authored a controversial article that dismissed concerns that cutbacks in prescribing would be harmful to patients, saying that reducing the supply of opioids “may increase heroin use and reduce quality of life in the short term, but in the long term could generate positive health benefits.”

Humphreys’ commission took a more even-handed approach to opioids, saying the drugs “are in some cases of great benefit and in others very harmful” and that regulators should avoid “overly lax or overly restrictive prescribing policies, both of which have substantial potential for harm.”

But there is little discussion in the report of how opioid prescribing has already declined significantly in the U.S. and Canada, how it has harmed pain patients, or that the overdose crisis is now largely fueled by illicit fentanyl and other street drugs, not prescription opioids.

"The Stanford/Lancet report on the so-called opioid crisis is not only one-sided. It is fundamentally wrong on facts and deliberately slanted on interpretation. This is unsurprising, given the participation of several long-time anti-opioid zealots on its commission,” said patient advocate Richard “Red” Lawhern, PhD. 

"It is now well established from multiple published sources that over-prescription of pain relievers by physicians treating pain patients is not now and never has been a significant source of addiction or overdose-related mortality in the US.  Deaths solely due to prescription opioids are in fact quite rare. Overdose deaths are dominated by deaths due to poly-pharmacy, alcohol, and illegal street fentanyl.” 

The commission’s work was funded by Stanford University’s School of Medicine.

Few Fatal Overdoses Found in Rx Opioid Study

By Pat Anson, PNN Editor

The odds of having an overdose are relatively small for most people after getting their first opioid prescription, but are significantly higher if patients are over age 75, insured by Medicaid or Medicare, and have a history of depression or substance use disorders, according to a large new study.

Researchers analyzed health claims for nearly 237,000 opioid “naïve” patients in Oregon from 2013 to 2018, and found that about 3 in 1,000 (0.3%) experienced an overdose within three years of their first prescription. The vast majority of the 667 reported overdoses were non-fatal, and researchers could not determine if they involved illicit opioids or the opioids that patients were prescribed.  

“There were relative few fatal overdoses - I believe it was less than 100. So we didn't look further than that because there wasn't statistical power,” said lead author Scott Weiner, MD, an emergency physician at Brigham and Women’s Hospital in Boston. “Unfortunately, it is not possible to ascertain if the overdose was from illicit or prescribed opioids from the data.”  

One of the more surprising aspects of the study is that there was little association found between overdoses and high dose prescriptions. The CDC says opioids prescribed at daily doses that exceed 90 MME (morphine milligram equivalent) raise the risk of overdose, but Weiner and his colleagues found little evidence to support that.  

“Incidence of overdose was not associated with varying levels of MME that were received in the first 6 months, which may indicate that patient factors may be more important than the strength of the opioids prescribed. These are both novel findings,” researchers reported in in JAMA Network Open.

The research team did find a higher risk of overdose when patients were prescribed long-acting opioids such as oxycodone, or used opioids concurrently with benzodiazepines, a class of anti-anxiety medication.  

Patients in the study who refilled an opioid prescription 6 or more times also had a higher overdose risk, as did those who got refills from three or more pharmacies. 

Patients with alcohol or substance use disorders had the highest risk of overdose, as did those with a history of depression or psychosis. 

Medicaid, Medicare and Elderly Patients at High Risk

Another high risk factor associated with overdose is insurance coverage. Patients covered by Medicaid had an overdose risk almost four times higher than those covered by a private insurer, while those insured by Medicare Advantage had an overdose risk nearly 8 times higher than commercially insured patients. 

The finding that patients over age 75 had an overdose risk nearly three times higher than other age groups is not surprising, according to one pain management expert.

“Obviously, this older age group has more comorbidities which is also associated with increased risk,” said Lynn Webster, MD, past president of the American Academy of Pain Medicine. “What we don’t know is why opioids were prescribed and if severity of pain or suicidality or denial to prescribe opioids for severe pain could be contributing factors for the higher risk of overdose with elderly patients.”

Weiner cautioned doctors against taking the findings too literally. For example, although African-Americans were found to have a higher risk of overdose compared to white patients, they make up only a small percentage of Oregon’s population, making the data for them statistically weak.

“I absolutely do not advocate for suboptimal pain control for any patient, regardless of their risk profile. However, I do want prescribers to be careful when prescribing opioids to any previously naive patient, and to be extra careful when prescribing to the higher risk groups,” Weiner told PNN in an email.

“For patients in the higher risk groups, particularly those with diagnosis of substance use disorders, I would counsel the patient and inform them of their elevated risk and come up with a game plan for safety. I am only unwilling to prescribe to anyone when I don't believe an opioid is indicated for their condition.”  

Patients Shouldn't Have to Choose Between Opioids and Mental Health Drugs

By Victoria Reed, PNN Columnist

I belong to several online chronic pain support groups. One thing I often notice is that many people say that they’ve been forced to choose between their psychiatric meds and their pain relievers.

Depression is a serious condition that affects many people in the pain community and is often accompanied by anxiety and insomnia. Anxiety is often treated with a class of medication known as benzodiazepines. It is primarily “benzos” that patients are being told to give up in order to continue receiving opioids.

The reason for this is that opioids and benzos depress the central nervous system and raise the risk of respiratory depression – which is slow and ineffective breathing. Mild cases can result in tiredness, daytime sleepiness and shortness of breath. More serious cases can lead to seizures, headaches and even death.

In 2016, the CDC told doctors to “avoid prescribing opioid pain medication and benzodiazepines concurrently whenever possible” and the FDA updated drug labels to warn about the “serious risks” of taking the medications concurrently.

This issue hits home for me because a close relative of mine is on psychiatric medication and also suffers from chronic pain. Currently, she only uses over-the-counter meds for the pain of fibromyalgia, but there may come a time when she might need a stronger opioid pain reliever, as fibromyalgia is progressive and tends to worsen over time.

Will she be able to get a prescription pain medication without having to give up her psychiatric meds? Doctors are already reluctant to prescribe opioids, especially if a patient is being treated with a benzodiazepine or another psychiatric drug, such as those used to treat ADHD.

As mental health conditions worsen due to the stress of the pandemic, many are going to need to stay on their medications. Doctors forcing people to choose between their pain meds and psychiatric meds is only going to worsen the problem of illicit drug use. Sadly, the number of suicides will increase as well.

Being in a situation of having to choose one med over another when you need both, is obviously never good. I hope that my relative never finds herself in this situation.

Many pain sufferers have taken opioids and benzos safely and responsibly for years. They should not be forced to choose between the two drugs, as long they are medically necessary and appropriate.

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

Medical Cannabis Significantly Reduced Opioid Use by Pain Patients

By Pat Anson, PNN Editor

Pain patients on long-term opioid therapy were able to significantly reduce their use of opioid medication after they started using medical cannabis, according to a small new study.

Researchers at the Institute for Pain Medicine in Pittsburgh followed 115 patients with severe chronic or intractable pain who had consumed opioids for at least six months before trying medical cannabis. Many lived with pain from failed back syndrome or rheumatoid arthritis. Their average daily opioid dose was nearly 50 MME (morphine milligram equivalent).

Patients were allowed to continue taking opioids during an initial trial with cannabis, but agreed to be weaned off opioids if cannabis was used long-term. Researchers encouraged patients to try different formulations and types of cannabis, but to start with low doses of THC and to avoid smoking.

Thirty patients dropped out of the study because cannabis was ineffective or had unwelcome side effects.

Of the 75 patients who continued using cannabis, many were able to taper themselves to a lower dose of opioids. There was an average 67% decrease in MME after one month and a 73% decrease after two months (from 49.9 MME to 13.3 MME).

“The current study’s approach has led to a significant decrement in chronic opioid use for the majority of patients with chronic pain deciding to trial medical cannabis in our clinical setting,” researchers reported in the journal Pain Physician.

“We feel strongly, based on our study, that medical cannabis should only be available for treatment under a physician’s oversight and as part of a treatment strategy which includes compliance monitoring to minimize harms and improve efficacy rates. After discussing the risks, benefits, and potential side effects of chronic opioid therapy with the patient, the authors of this study present medical cannabis, used with the current study’s paradigm, as a potentially effective class of treatment for chronic pain.”

Previous studies have also found an association between cannabis and reduced opioid use, although this is one of the first to measure it through MME.

A 2020 study found that nearly half of chronic pain patients using medical cannabis reported significant improvement in their pain levels. Most were able to reduce or stop their use of opioids.

A recent Harris Poll found that twice as many Americans are using cannabis products to manage their pain than prescription opioids.

Does Opioid Medication Make You Euphoric?

By Carol Levy, PNN Columnist

“Dose escalation, dose reduction or discontinuation of long term opioid analgesics, have potential to harm or put patients at risk if not made in a thoughtful, deliberative, collaborative, and measured manner.

Clinicians have a responsibility to provide or arrange for coordinated management of patient's pain and opioid-related problems, and they should never abandon patients.”

That was written in a tapering guideline put out by the U.S. Department of Health & Human Services (HHS) in 2019. In some respects, it was an attempt to undo some of the damage caused by the release of the CDC opioid guideline three years earlier, which led to many patients being rapidly tapered and/or abandoned by their doctors.

Out of curiosity, I went back to the CDC guideline. A Google search took me to a 2016 New England Journal of Medicine article, co-authored by then-CDC Director Thomas Frieden, who explained the rationale for the guideline this way:

“Whereas the benefits of opioids for chronic pain remain uncertain, the risks of addiction and overdose are clear…. nearly all the products on the market… are no less addictive than heroin.”

How can patients fight against this kind of propaganda? The purpose seems clear: opioid medication and heroin are basically the same. And when chronic pain patients take them, they get addicted. Not only that, we are told, they enjoy it!

“Heroin and prescription opioid pain relievers both belong to the opioid class of drugs, and their euphoric effects are produced by their binding with mu opioid receptors in the brain,” reads information from the National Institute on Drug Abuse.

In other words, we enjoy our opioids because they make us feel “euphoric.”

I could not find any articles or research that asked people in chronic pain, “Do you feel euphoric when you take opioids? Do you enjoy the opioids you are on? Would you take them if you didn't have chronic pain?”  

No one in the online chronic pain group I administer or the others to which I belong has ever said or written, “Dilaudid makes me feel wonderful, it makes me feel high. I love it.”

But they have said or written, “Demerol makes me feel cloudy-headed and my mouth feels like cotton. But I can do more with my life now that I am on it.”

I cannot find research that asked us if our doctors have made us partners with them when tapering or ending our opioid prescriptions. Where are the papers that use us as the experts about the side effects we have when the reduction or withdrawal of opioids is forced on us?

HHS is right. It has to be a collaborative effort when doctors reduce or end opioid prescriptions. But it seems that most doctors are too afraid or unable to act as partners, instead seeing themselves as the ultimate authority.

Changes in opioid prescribing policy should have input from all of us: researchers, policy makers, doctors and patients. It should be thoughtful, deliberative and collaborative -- just as tapering should be a collaboration between our docs and ourselves.

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

Covid Made Healthcare Even More Difficult for People with Chronic Illness

By Roger Chriss, PNN Columnist

As the U.S. enters its third year of the pandemic, Covid is changing chronic illness care in important ways. Not only is long Covid being recognized as a new chronic illness, but the pandemic’s impact on hospitals, drugs and medical supplies, and everyday life for people with chronic illnesses is growing.

The CDC recognized the problem last year. Not only are people with chronic illnesses like diabetes, heart disease, chronic obstructive pulmonary disease (COPD) and kidney disease at greater risk of severe illness from Covid-19, the CDC says the pandemic has “raised concerns about safely accessing health care and has reduced the ability to prevent or control chronic disease.”

Hospitals have repeatedly had to delay routine care in the past two years. As hospitals run short on staff and beds, people whose medical conditions require regular care are struggling to keep appointments. NBC News reported last month that “prolonged lack of access to medical care because of Covid surges is having an outsize effect on patient care.”

The American College of Surgeons is warning that delayed elective surgeries “can lead to more complicated operations and longer recovery times because disease can progress during the delay.” Moreover, delays in cancer screening can lead to further progression of the disease and more complex surgeries.

Recently the American Red Cross put out an urgent call for blood donors because the pandemic and winter weather have combined to force the cancellation of hundreds of blood drives, creating the worst blood shortage in over decade. The “blood crisis” is so severe that doctors have to decide which patients will get blood transfusions and who will have to wait.

The pandemic has also impacted the drug supply for chronic illness. False claims about hydroxychloroquine being an effective treatment for Covid in early 2020 led to shortages for people with lupus and other autoimmune disorders who need the drug, which took many months to correct. In 2021, claims the anti-parasitic drug ivermectin could also treat Covid led to shortages.

Now in early 2022 the antibody drug Evusheld, which can help protect immunosuppressed people against COVID-19, is in short supply. NPR reported Evusheld is so hard to get that some hospitals are selecting patients by lottery.

Medical supplies are still difficult to find. While some people protest any form of mandatory face covering, masks have been a way of life for immunocompromised people for many years. A high-quality mask like a N95 can literally save lives, and such masks are still in short supply. The same for nitrile gloves and other simple medical supplies that may be essential for at-home care.

Covid is also impacting everyday life. People with chronic illness, in particular those with compromised immune systems, do not have the luxury of being “done with Covid.” The ongoing presence of a viral pathogen will limit them for the foreseeable future. Even when the omicron Covid surge starts to wane, they will need to keep using high-quality masks, weighing risks when going out, and tracking possible exposure.  

"There is a casual acceptance that the pandemic will turn into something endemic, an inevitability that ‘everyone’ will get COVID eventually,” disability rights advocate Alice Wong told NPR. “Leaders, medical professionals and public health experts have said something along those lines with zero acknowledgement that people will still die and those deaths will be disproportionately from high-risk groups.”

It has become trite to say that Covid mostly affects people with “comorbidities.” It’s important to note that comorbidities are found in the vast majority of people over 30, and that chronic illness is a fact of life for some people that cannot be cured. Covid impacts their lives in significant ways. Hopefully, public health officials can come up with new approaches that don’t require the chronically ill to risk more and endure more as the rest of the country tries to get back to normal.

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.  

Teen Charged with Murder in Fentanyl Death of 12-Year-Old

By Pat Anson, PNN Editor

A California teenager was arrested and charged with murder this week in the death of a 12-year-old girl who fatally overdosed after consuming a counterfeit painkiller made with illicit fentanyl. The 16-year-old suspect allegedly sold the pill to the girl in 2020, and she overdosed after crushing and snorting the tablet at a party in San Jose.

Like many other counterfeit pills involved in overdoses, the tablet was made to look like a 30 mg oxycodone pill, stamped with a “30” on one side and an “M” on the other. The girl passed out and began snoring soon after ingesting the drug, which prosecutors say is a “telltale sign of a fentanyl overdose.”

“After thousands of deaths, everyone should know that fentanyl is a deadly poison,” Santa Clara County District Attorney Jeff Rosen said in a press release. “Thanks to the San Jose Police Department, the Santa Clara County Specialized Enforcement Team, and our investigators, this child’s tragically short life may help save others.” 

The DA’s office calls the 12-year-old victim “Jane Doe” because of her age, but local media have identified her as Dalilah Guerrero of San Jose. The girl was with two other teens when she bought the “M-30” pill from the alleged dealer. The group later took a video of Dalilah lining up the crushed pill for ingestion.   

The 16-year old suspect’s name has not been released because he is a minor. Investigators looking into his online social media accounts reportedly found screen shots of public service warnings about fentanyl that predated the girl's death.

Failed Policies Made Drug Crisis Worse

The overdose of such a young victim is the latest example of how the “opioid epidemic” has morphed into an even more deadly overdose crisis fueled by illicit fentanyl and other street drugs. Efforts by law enforcement and public health officials to prevent more deaths by prosecuting doctors and restricting the supply of opioid medication have not only failed – they may have made the drug crisis worse.

In recent years, the number of opioid prescriptions has fallen dramatically nationwide and now stand at 20-year lows, while fatal overdoses rose to record levels. Last year the number of U.S. drug deaths crossed 100,000 for the first time, largely driven by illicit fentanyl.

As the charts show below, Santa Clara exemplifies both trends, with prescriptions falling dramatically in the county while fentanyl deaths spiked.

SOURCE: CALIFORNIA DEPT. OF PUBLIC HEALTH

Santa Clara County was the first local government in the nation to file a lawsuit against drug makers alleging that they caused the opioids crisis. The law firm of Motley Rice filed the initial lawsuit in 2014 on behalf of Santa Clara, and the case snowballed from there into nationwide litigation against opioid makers, distributors and pharmacies.

Last year a California judge ruled that drug makers did not use deceptive marketing to promote pain relievers and there was “no evidence” the companies were liable for the state’s opioid crisis.

The tragic death of Dalilah Guerrero is not the first time Santa Clara County has lost a young person to counterfeit pills. In 2019, county health officials announced that 9 fatal overdoses had been linked to fake oxycodone pills, including the deaths of two teenagers.  

In 2020, murder charges were filed against a San Jose man who allegedly sold over Snapchat a counterfeit pill laced with fentanyl to an 18-year-old girl and her 17-year old boyfriend. Both teens overdosed. Paramedics were able to revive the boyfriend, but the girl died.

In 2020, the last year for which full data is available, there were 143 opioid related deaths in Santa Clara County, a 139% increase from 2018.  Fentanyl was involved in most of them.

Pharmacies Turning Away Patients Seeking 4th Covid Shot

By Liz Szabo, Kaiser Health News

Patients with weakened immune systems — who are at high risk from covid-19 — say pharmacies are turning them away when they seek additional vaccine doses recommended by federal health officials.

Alyson Smith became eligible this month for a fourth vaccine dose because her medications leave her immunocompromised.

Although the Centers for Disease Control and Prevention encourages most adults to receive a total of three mRNA vaccines — two “primary” vaccinations and a booster — the agency now advises people with weak immune systems to receive three primary shots plus a booster, for a total of four doses.

Many people are confused about the difference between a primary vaccine series and a booster. A primary vaccine series helps people build antibodies to a new pathogen, while a booster combats waning immunity.

As Smith learned, many pharmacists are unaware that the CDC’s vaccine guidance has changed.

Smith booked her vaccine appointment online. But when she showed up at a Chicago-area Walgreens for the appointment Jan. 19, an employee told her the pharmacy chain wasn’t administering fourth doses to anyone.

Smith said she’s frustrated that vulnerable people are being forced to make multiple visits to crowded pharmacies and supermarkets, where many customers are unmasked.

“I feel for the pharmacists, because they’re overwhelmed like everyone else,” said Smith, 52. “But two years into the pandemic, there is a corporate responsibility to take action when the guidance comes down.”

In a written statement, Walgreens said it has administered thousands of fourth doses to immunocompromised people. “As vaccination guidelines continue to evolve, we make every effort to continuously update our pharmacy teams.”

(Update: In a conference call on January 26, the CDC told pharmacists that people with moderate to severe immune suppression are eligible for a 4th covid shot. About 7 million Americans can get the extra shot.)

Confusing Vaccine Guidance

The confusion stems from recent updates in vaccine advice for immunocompromised people, as well as a change in the interval between the end of a primary vaccine series and a booster.

• In August, the CDC began allowing immunocompromised people to receive a third dose of mRNA vaccine as part of their primary vaccination.

• In October, the CDC quietly updated its website to allow people with suppressed immune systems to receive a fourth shot as a booster.

• In January, the agency shortened the time that anyone must wait for a booster from six months to five.

People who received the one-dose Johnson & Johnson vaccine are eligible for a single booster, for a total of two shots, according to the CDC.

Given how often vaccine guidelines have been revised in recent months, some pharmacists have had a hard time keeping pace, said Mitchel Rothholz, chief of governance and state affiliates at the American Pharmacists Association. Pharmacy employees have coped with an ever-expanding workload but a deepening shortage of employees during the pandemic, he said.

“I don’t know any provider who wants to turn away a patient,” Rothholz said. “The CDC continues to make updates, and it’s becoming very difficult for providers at the grassroots level to keep up. I can understand why a pharmacist would say, ‘Corporate hasn’t given us the green light.’”

Confusion about who is eligible for a fourth shot “was inevitable, although I’m not saying it’s right or wrong,” he said.

Yet many patients and their doctors are frustrated.

If patients keep up with the latest guidelines, they ask, why can’t their pharmacy?

“It’s ridiculous,” said Dr. Dorry Segev, a transplant surgeon and researcher at Johns Hopkins University. “CDC makes it very clear that it’s allowed, and even people who print out the CDC guidance and take it to their pharmacies are being turned away.”

Charis Hill, 34, joined a chorus of immune-suppressed people venting their concerns on social media in recent days. When Hill tweeted Jan. 21 that Rite Aid should better educate its staff, the retailer tweeted back that day, saying, “We’re very sorry you didn’t have a great experience, Charis. Please check back with us early next month for more information regarding the fourth dose.”

In a written statement, Rite Aid said it continually educates its staff as CDC advice changes, and “is looking into the response that was provided to the customer on social media.”

Dr. Shikha Jain, an assistant professor of medicine at the University of Illinois Cancer Center in Chicago, said patients in rural areas often drive long distances to look for vaccines. One of her patients was “almost in tears” after being turned away. Jain tried to help by calling the pharmacy but was on hold so long that she had to hang up to see patients.

Jain said the CDC needs to do a better job educating doctors, pharmacists, and patients.

The CDC did not respond to a request for comment before publication.

Teresa Strahlman, 61, said she’s immunocompromised due to medications she takes for lupus, an autoimmune disease. But the Maryland woman said she didn’t realize she was eligible for a fourth dose until reading a KHN post on Facebook. “I had no idea, and I have a million doctors,” Strahlman said. “No one has said anything to me.”

The CDC estimates that 2.7% of adults — or 7 million people — are immunocompromised, a group that includes people with medical conditions that dampen their immune response, as well as those taking immune-suppressing drugs because of organ transplants, cancer, or autoimmune diseases.

Some immunocompromised people say that being turned away from a pharmacy is especially frustrating, given all that they have sacrificed during the pandemic.

Linda Rushing, 74, has given up attending church services in person, although she’s deeply religious, because of a weakened immune system that leaves her prone to a variety of infections.

Rushing made three visits to local pharmacies before finding someone to administer her fourth shot.

“It’s a tragedy to need help and not be able to get it,” said Rushing, of Rowlett, Texas, whose daughter and granddaughter are also immunocompromised. “I don’t want covid. I don’t want to give it to anybody, and I’m trying to do everything I can not to die from it.”

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

With Little Regulation, Many CBD Products Are Mislabeled

By Pat Anson, PNN Editor

CBD (cannabidiol) is being touted as a treatment for nearly everything these days, from pain and anxiety to insomnia and high blood pressure. There’s even talk about CBD as a potential treatment for COVID-19.

But how much do we really know about the CBD edibles, beverages, oils and other products being sold over-the-counter without a prescription? Are the labels accurate? Are they really free of THC (tetrahydrocannabinol), marijuana’s psychoactive ingredient, as some manufacturers claim?

A new study by researchers at the University of Wisconsin School of Pharmacy should give pause to consumers who put their faith in labels and a cannabis industry that is largely unregulated. The researchers bought 39 CBD products from retail stores in southwest Wisconsin and analyzed them in a laboratory.

Their findings, recently published in the journal Epilepsy & Behavior, found that the vast majority of CBD product labels are inaccurate, containing either too much CBD, too little or none at all. And some products that claimed to be “THC Free” contained enough to give you a good buzz, whether you wanted it or not.

“Our data demonstrate that despite warning letters issued by FDA over the past few years a substantial number of readily available CBD formulations continue to be mislabeled,” researchers reported. “In some cases, products labeled as having CBD contained virtually no active ingredient. This was particularly true for the aqueous (beverage) products.”

Of the 21 CBD-infused beverages that were tested, only one was accurately labeled. The vast majority (78%) were “over-labeled” – meaning they contained less than 90% of the CBD they were supposed to have. The rest (14%) were “under-labeled” – meaning they had 110% or more CBD than the label indicated.

Other products tested, such as edibles, oils and transdermal patches, weren’t much better. Only about a third of the oils (36%) were appropriately labeled with the right amount of CBD, and one oil made by HempLucid contained enough THC to cause intoxication if someone consumed less than half a bottle.

“We found that over half of the studied oil-based products contained measurable THC. This may be of concern not only for the potential of adverse, or at least unexpected, CNS effects, but THC contamination may also create difficulty for patients who are subject to testing for illicit drugs by their employers, parole officers, and even by their own providers in some states as a prerequisite for continued prescribing of controlled substances,” researchers warned.

The concern about THC showing up in drug tests isn’t an idle one. A recent study at Massachusetts General Hospital found THC in nearly 80% of the urine samples from patients who reported using CBD products, including some who thought they were only consuming CBD.

A recent study by Leafreport had findings that were similar to the University of Wisconsin study. Out of 221 CBD products tested, 60% didn’t match their label claims. On average, the CBD content was off from the label by nearly 25 percent.

Although the 2018 Farm Bill legalized the use of hemp-based products that contain less than 0.3% of THC, the FDA has yet to adopt new rules to regulate the cannabis industry. The FDA says it cannot issue regulations until more is known about the safety of CBD products, so for now the agency is “monitoring the marketplace” and only rarely taking enforcement action.

The FDA is well aware of the discrepancies in CBD labeling. A 2021 study by the agency of 147 cannabis products found that less than half contained CBD within 20% of their label declarations. But as long as a company doesn’t make therapeutic claims about their CBD products or call them food supplements, the FDA will probably leave them alone, even if their labels are inaccurate.

Advocacy Group Calls on Insurers to Modify Step Therapy for Migraine Treatment

By Pat Anson. PNN Editor

The National Headache Foundation (NHF) is calling on health insurers to stop using rigid “step therapy” policies and make it easier for migraine patients to get access to new treatments.

Step therapy is a common practice in the insurance industry to control costs. It requires patients to try cheaper and often older medications first, before “stepping up” to drugs that cost more.   

“For too long, migraine patients have been treated differently than others with medical issues as it relates to access to prescription medications. Specifically, clinicians are often forced to use outdated prescription drugs in a stepwise approach to all patients, without considering the needs of the individual patient,” said Thomas Dabertin, Executive Director/CEO of NHF, a non-profit that seeks to raise awareness about migraine and headache disorders.  

“Unfortunately, the current care models adopted by payers have not kept pace with the many advances in treatment. As a result, clinicians are using older medications, some of which are not even designed for the specific treatment of migraine, even though new migraine-specific therapies now exist.”

Migraine treatment has been revolutionized in recent years by the introduction of neuromodulation devices and drugs that inhibit calcitonin gene-related peptides (CGRP), proteins that cause migraine pain. CGRP inhibitors cost several thousand dollars a year, while neuromodulation devices usually cost several hundred dollars.

Older drugs used to treat or prevent migraine, such as triptans, antidepressants and over-the-counter pain relievers, are much cheaper and often come in generic formulations. Many Insurers require patients to try at least two of the older medications first -- and for months at a time -- before authorizing newer therapies.

“NHF believes it is inappropriate to require all patients to follow this ‘try two and fail’ model before they may be offered treatment with any FDA-approved migraine preventive, including neuromodulation devices, with established lower adverse event profiles,” the NHF said in a position statement.

“For patients who are highly impacted or disabled by migraine, clinicians should not be directed to deliver outdated models of care that apply a predetermined algorithm in a stepwise approach to all patients, without considering the needs of the individual patient, and that encourage the use of older preventive drugs when targeted and migraine-specific therapies now exist.”

The NHF wants insurers to adopt modified forms of step therapy for migraine sufferers, based on the severity of their disease and the frequency of their attacks.

For patients who have seven or fewer migraine days per month, the NHF recommends that patients be required to try only one generic drug for migraine prevention. For patients who experience 8 or more migraine days per month, the foundation recommends that providers have “unfettered access” to FDA-approved prevention drugs.

For the treatment of acute migraine pain, the NHF recommends that two generic drugs be tried first, but if the drugs fail to work within two hours or have unwelcome side effects, providers be allowed to select “another suitable therapy” based on a patient’s needs.  

“The NHF advocates that payers adopt care models that are patient-centric, where the clinician, in collaboration with the patient, is the primary decision-maker and selects a treatment that addresses the patient’s treatment goals and needs,” Dabertin said.

Although the NHF accepts donations from the pharmaceutical industry, Dabertin told PNN the foundation’s new position statement was based solely on input from patients and providers.

Neuromodulation Device Effective for Most Migraine Sufferers

By Pat Anson, PNN Editor

A wearable neuromodulation device significantly reduced headache pain in nearly two-thirds of migraine sufferers, according to a new study. About one in four participants (22.6%) who used the device had no migraine pain after two hours.

The study findings, published in the journal Frontiers in Pain Research, are based on an analysis of over 23,000 remote electrical neuromodulation (REN) treatments with Nerivio, a device worn on the upper arm that uses mild electrical pulses to disrupt pain signals.

It’s important to note the study was designed and funded by Theranica Bio-Electronics, Nerivio’s manufacturer. Three of the five co-authors are Theranica employees.

“The current analysis of a very large group of patients, over a long period of time and multiple treatments, reinforces that REN provides a safe, efficacious and stable treatment option for acute treatment of migraine, both as a standalone and as an adjunct therapy. This is a very important component in the migraine therapy toolbox," lead author Jessica Ailani, MD, Director of the MedStar Georgetown Headache Center and Professor of Clinical Neurology, said in a press release.

Nerivio is controlled by a smartphone app that allows patients to set the intensity of their 45-minute treatments at the onset of a migraine. The app also has a migraine diary that allows patients and their doctors to track the effectiveness of REN.

It is from this app that study data was collected from 12,151 U.S. patients from 2019 to 2021. Most had been prescribed REN by headache specialists, indicating their migraines were difficult to treat with pain medication alone. During the study, about two-thirds of patients only used REN, with the remainder continuing to use over-the-counter or prescription medications.

"To the best of our knowledge, this study is the largest prospective real-world evidence analysis of a migraine device to date," said Alon Ironi, CEO of Theranica.

Migraine affects more than 37 million people in the United States, according to the American Migraine Foundation. In addition to headache pain, migraine can cause nausea, visual disturbances, and sensitivity to light and sound. Women are three times more likely to suffer from migraines than men.

Although migraine sufferers have many new treatments available, such as CBD oil and calcitonin gene-related peptide (CGRP) inhibitors, many find them too expensive or ineffective. Theranica hopes Nerivio can help fill the treatment gap, either as a standalone replacement for medication or as an adjunct.

"While some people with migraine get relief from prescribed or even over-the-counter medications, others do not respond to medications, or cannot tolerate their side effects. There are also people who cannot use medications due to contraindications or being at risk of drug-drug interactions or medication overuse headache,” Ailani said.

The FDA approved Nerivio as a treatment for acute migraine in adults in 2019. Last year the label was expanded to include children over the age of 12 with episodic or chronic migraine. Over 25,000 people in the U.S. have used the device, according to Theranica.

Nerivio is only available by prescription. When purchased wholesale, the listed price is $599 for a twelve-treatment unit, although buyers can save money by enrolling in a patient savings program, depending on their insurance coverage.  

U.S. Ranked Poorly in End-of-Life Care

By Pat Anson, PNN Editor

The U.S. healthcare system barely gets a passing grade in caring for dying patients, ranking well behind most developed countries and even some third world nations, according to a new analysis of end-of-life care around the world.

The United Kingdom earned the highest ranking in the study, followed by Ireland, Taiwan, Australia, South Korea and Costa Rica, which all earned A grades. The U.S. earned a C grade, ranking 43rd of the 81 countries evaluated. Nigeria, Guatemala, Botswana, Romania, Mongolia and several other low-income countries had higher grades than the U.S.  

“Many individuals in both the developed and developing world die very badly – not at their place of choice, without dignity, or compassion, with a limited understanding about their illness, after spending down much of their savings, and often with regret about their course of treatment. These things are very common,” lead author Eric Finkelstein, PhD, a palliative care expert and professor at Duke University’s Global Health Institute, said in a news release.

Top 10 Countries on Quality of Death Index

SOURCE: LIEN FOUNDATION

The study findings, recently published in the Journal of Pain and Symptom Management, are based on a survey of 181 palliative care experts around the world who were asked how well their own countries provided for the physical and emotional wellbeing of dying patients.

Over a dozen health factors were evaluated, including pain management, being treated kindly, affordability, spiritual and emotional needs, and providing patients with a clean and safe space. Treatments that address quality of life, rather than just extending life, were also an important consideration.          

“Perhaps the main conclusion from this important exercise is that most people in the world die badly -- many through no treatment at all and many through excessive often futile treatment that increases suffering,” says Richard Smith, a palliative care expert and former editor of the British Medical Journal.

It’s no surprise that most developed countries with well-funded healthcare systems rated highly in end-of-life care, while poorer countries fared worse.

“The overwhelming need for palliative care is in low and middle-income countries, where less than a third of services exist,” said co-author Stephen Connor, executive director of the Worldwide Hospice Palliative Care Alliance.

The obvious exception to that is the United States’ lackluster rating. Researchers say that’s because healthcare decisions in the U.S. are often based on last-ditch efforts to extend life, rather than ensuring comfort and quality of life in a patient’s final days.  

“We spend so much money trying to get people to live longer, but we don’t spend enough money in helping people die better,” says Finkelstein, who is also the director of the Lien Centre for Palliative Care at Duke-NUS.

The study was funded by the Lien Foundation, a Singapore-based nonprofit focused on improving quality of life. Previous surveys of palliative care experts by the foundation ranked the U.S. 9th on the “Quality of Death” index in 2010 and in 2015.

Finkelstein says the covid pandemic has opened a window into end-of-life care, with millions of patients spending their dying moments alone, often separated from their families and without emotional support.

“Generally, people don’t talk about death. COVID has made it less taboo. We have an opportunity to continue this discussion and not just help COVID patients, but to help everyone have a better end-of-life experience,” he said.

Finkelstein hopes the study will spur action from policymakers to improve conditions for dying patients, such as loosening restrictions on pain medication. A recent study in Oregon found that overzealous enforcement of opioid guidelines led to a significant decrease in opioid prescribing to patients being admitted to hospice, resulting in some terminally ill patients suffering needlessly.

Finkelstein urges people to ensure a better end-of-life experience for themselves and their loved ones by making an end-of-life plan and discussing it with family and friends.

“Do an advanced care plan or at least express your wishes to friends and family,” Finkelstein says. “Don’t wait. By the time you fall ill, it may be too late and folks may not know what you want.”