Seniors Missing Out on Billions of Dollars in Benefits

By Judith Graham, Kaiser Health News

Millions of older adults are having trouble making ends meet, especially during these inflationary times. Yet many don’t realize help is available, and some notable programs that offer financial assistance are underused.

A few examples: Nearly 14 million adults age 60 or older qualify for aid from the federal Supplemental Nutrition Assistance Program (also known as food stamps) but haven’t signed up, according to recent estimates. Also, more than 3 million adults 65 or older are eligible but not enrolled in Medicare Savings Programs, which pay for Medicare premiums and cost sharing. And 30% to 45% of seniors may be missing out on help from the Medicare Part D Low-Income Subsidy program, which covers plan premiums and cost sharing and lowers the cost of prescription drugs.

“Tens of billions of dollars of benefits are going unused every year” because seniors don’t know about them, find applications too difficult to complete, or feel conflicted about asking for help, said Josh Hodges, chief customer officer at the National Council on Aging, an advocacy group for older Americans that runs the National Center for Benefits Outreach and Enrollment.

Many programs target seniors with extremely low incomes and minimal assets. But that isn’t always the case: Programs funded by the Older Americans Act, such as home-delivered meals and legal assistance for seniors facing home foreclosures or eviction, don’t require a means test, although people with low incomes are often prioritized. And some local programs, such as property tax breaks for homeowners, are available to anyone 65 or older.

Even a few hundred dollars in assistance monthly can make a world of difference to older adults living on limited incomes that make it difficult to afford basics such as food, housing, transportation, and health care. But people often don’t know how to find out about benefits and whether they qualify. And older adults are often reluctant to seek help, especially if they’ve never done so before.

“You’ve earned these benefits,” Hodges said, and seniors should think of them “like their Medicare, like their Social Security.”

Here’s how to get started and some information about a few programs.

Getting Help: In every community, Area Agencies on Aging, organizations devoted to aiding seniors, perform benefits assessments or can refer you to other organizations that conduct these evaluations. (To get contact information for your local Area Agency on Aging, use the Eldercare Locator, a service of the federal Administration on Aging, or call 800-677-1116 on weekdays during business hours.)

Assessments identify which federal, state, and local programs can assist with various needs — food, housing, transportation, health care, utility costs, and other essential items. Often, staffers at the agency will help seniors fill out application forms and gather necessary documentation.

A common mistake is waiting until a crisis hits and there’s no food in the refrigerator or the power company is about to turn off the electricity.

“It’s a much better idea to be prepared,” said Sandy Markwood, chief executive officer of USAging, a national organization that represents Area Agencies on Aging. “Come in, sit down with somebody, and put all your options on the table.”

Older adults who are comfortable online and want to do their own research can use BenefitsCheckUp, a service operated by the National Council on Aging, at benefitscheckup.org. Those who prefer using the phone can call 800-794-6559.

Food Assistance: Some aging organizations are adapting to heightened demand for help from seniors by focusing attention on core benefits such as food stamps, which have become even more important as food inflation runs around 10%.

The potential to help seniors with these expenses is enormous. In a new series of reports, the AARP Public Policy Institute estimates that 71% of adults age 60 and above who qualify for the Supplemental Nutrition Assistance Program haven’t signed up for benefits.

In some cases, older adults may think benefits are too small to be worth the hassle. But seniors who lived alone received an average of $104 in food stamps per month in 2019. And at least 3 million adults 50 and above with very low incomes would receive more than $200 a month, AARP estimates.

To combat the stigma that some older adults attach to food stamps, AARP has launched a marketing campaign in Atlanta and Houston explaining that “food prices are rising and we’re all trying to stretch our grocery budgets,” said Nicole Heckman, vice president of benefit access programs at the AARP Foundation.

If the effort alters seniors’ perception of the program and increases enrollment, AARP plans to do a major expansion next year, she said.

Health Care Assistance: AARP is also working closely with community organizations in South Carolina, Alabama, and Mississippi that help older adults apply for Medicare Savings Programs and low-income subsidies for Part D prescription drug plans. It plans to expand this program next year to as many as 22 states.

The value of these health care benefits, targeted at low-income seniors, is substantial. At a minimum, Medicare Savings Programs will cover the cost of Medicare’s Part B premiums: $170 a month, or $2,040 annually, for most seniors. For older adults with the lowest incomes, benefits are even broader, with cost sharing for medical services also covered.

“Even if you think you might not qualify, you should apply because there are different rules across states,” said Meredith Freed, a senior policy analyst for KFF’s Program on Medicare Policy.

Low-income subsidies for Part D prescription drug plans, also known as Extra Help, are worth $5,100 annually, according to the Social Security Administration. Currently, some seniors get only partial benefits, but that will change in 2024, when all older adults with incomes below 150% of the federal poverty level ($20,385 for a single person in 2022) will qualify for full Extra Help benefits.

Because these health care programs are complicated, getting help with your application is a good idea. Freed suggested that people start by contacting the State Health Insurance Assistance Program in their state (contact information can be found here). Other potential sources of help are the Medicare hotline (800-633-4227) and your state’s department of aging, which can direct you to community organizations that help with applications. A list of the state departments can be found here.

Other Assistance: Be sure to check out property tax relief programs for seniors in your area as part of a broader “benefits checkup” process.

Older adults with low incomes also can get assistance with high energy bills through the Low Income Home Energy Assistance Program. Your local utility company may also provide emergency relief to seniors who can’t pay their bills. It’s worth making a call to find out, advised Rebecca Lerfelt, the retired assistant director of a Chicago-area Aging and Disability Resource Center. These resource centers help people seeking access to long-term care services and are another potential source of assistance for older adults. You can find one in your area here.

For veterans, “this may be the time to take a look at using your VA benefits,” said Diane Slezak, president of AgeOptions, an Area Agency on Aging in suburban Cook County, Illinois. “I run into a lot of people who are eligible for veterans benefits but not taking advantage of them.”

Advocates for many programs note that agencies serving older adults are facing staff shortages, which are complicating the efforts to provide assistance. Low pay is a commonly cited reason. For example, 41% of Area Agencies on Aging report staff vacancies of up to 15%, while an additional 18% report vacancies up to 25%, according to Markwood. Also, agencies have lost significant numbers of volunteers during the covid-19 pandemic.

At the same time, demand for help has risen, and clients’ needs have become more complex because of the pandemic and growing inflation.

“All of this is being amplified by the financial strains older adults are feeling,” Markwood said.

More healthcare and financial assistance programs can be found in PNN’s Patient Resources section.

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

Older Adults Look Beyond Western Medicine for Help With Joint Pain

By Pat Anson, PNN Editor

Most older Americans use over-the-counter pain medication and exercise to manage their joint pain, according to a large new survey of adults over age 50. Marijuana, opioids and non-steroidal anti-inflammatory drugs (NSAIDs) were rated the most effective pain relievers among those who used them.

The survey of 2,277 adults aged 50 to 80 was conducted online and over the phone early this year as part of the University of Michigan’s National Poll on Healthy Aging. It found that many older adults looked beyond conventional Western medicine for help with their joint pain, but few talked to their doctors about it.

Eight out of ten people (80%) with joint pain said they were confident they could manage it on their own. The survey found that two-thirds (66%) used over-the-counter pain relievers such as NSAID’s or acetaminophen.

The vast majority (89%) also used non-pharmacologic treatments to manage their symptoms, including exercise (64%), massage (26%), physical therapy (24%), splints or braces (13%), and acupuncture or acupressure (5%).

One in four (26%) said they take supplements, such as glucosamine, chondroitin and turmeric, while 11% use cannabidiol (CBD) products and 9% use marijuana.

Only a minority use prescription-based treatments, such as non-opioid pain relievers (18%), steroid joint injections (19%), oral steroids (14%), opioids (14%) and disease-modifying anti-rheumatic drugs (4%).

NATIONAL POLL ON HEALTHY AGING

“There are sizable risks associated with many of these treatment options, especially when taken long-term or in combination with other drugs. Yet 60 percent of those taking two or more substances for their joint pain said their health care provider hadn’t talked with them about risks, or they couldn’t recall if they had,” said Beth Wallace, MD, Assistant Professor of Internal Medicine at Michigan Medicine and a staff rheumatologist at the VA Ann Arbor Healthcare System.

“This suggests a pressing need for providers to talk with their patients about how to manage their joint pain, and what interactions and long-term risks might arise if they use medications to do so.”

Both NSAIDs and oral steroids have health risks, especially for older adults. Chronic NSAID use can worsen medical conditions such as hypertension, kidney disease, gastrointestinal bleeding and cardiovascular disease. Short-term use of oral steroids is associated with similar problems, as well as increased risk of developing diabetes, cataracts, insomnia, depression, and anxiety.

The risks are even greater if NSAIDs and oral steroids are taken together. Despite this, about one in four older adults taking oral steroids for joint pain said they had not discussed the potential risks with their provider.

Joint pain is common among older adults, including those who have not been formally diagnosed with arthritis. Nearly half of those surveyed reported joint pain that limited their daily activities, but few rated their symptoms as severe and most regarded joint pain as a normal part of aging.

Those with severe joint pain were somewhat fatalistic about it, with nearly half (49%) agreeing with the statement that “there is nothing a person with arthritis or joint pain can do to make their symptoms better.” Only 10% of those with mild joint pain agreed there was nothing they could do about it.

“Older adults with fair or poor physical or mental health were much more likely to agree with the statement that there’s nothing that someone with joint pain can do to ease their symptoms, which we now know to be untrue. Health providers need to raise the topic of joint pain with their older patients, and help them make a plan for care that might work for them,” said poll director Preeti Malani, MD, a Michigan Medicine physician who specializes in geriatrics and infectious diseases.

Why ‘Dopesick’ Should Get an Emmy for Fiction

By Dr. Lynn Webster and Hazel Shahgholi

Dopesick, the eight-part Hulu series on the opioid epidemic – sorry, the OxyContin epidemic -- has been nominated for 14 Emmy awards. Based on the best-selling book of the same name by Beth Macy, most of the nominations are well-earned, from the excellent acting of Michael Keaton (nominated for Outstanding Lead Actor) to the breakout performance of Kaitlyn Dever (nominated for Outstanding Supporting Actress) as an addicted patient.

As entertainment, Dopesick is an achievement, but the awards should only be given if the admission is made that the Hulu series is almost entirely fictional. So far, the series’ makers have failed to do so, with Executive Producer Danny Strong claiming that robust research was carried out to make the series as realistic as possible.

“I had done a ton of research, conceived and sold the show before I even knew the book Dopesick existed,” Strong told The Hollywood Reporter. "I read the book, and I loved it. I thought it was a beautiful book, incredibly well done.”

The problems with the Hulu series are many-fold, mostly arising from errors, conflations and under-examinations that are littered throughout Macy’s book, as well as the fact/fiction transition necessary in the baton pass from page to screen.

Strong took many elements of Macy’s dubiously factual text at face value, picking up on the well-established narrative that Purdue Pharma’s marketing of OxyContin was the root cause of the opioid epidemic.

As a result, the series was almost literally bound to fail as an adequate representation of the true origins and spread of opioid use disorder.

OxyContin Misinformation

We know that throughout the opioid epidemic, OxyContin made up, at most, only 4% of the total market for prescription opioids. This data was available at the time of Macy’s book release in 2018 and when the Hulu series came out in 2021. It’s not difficult to find, if one searches beyond the bombast of mainstream news about opioids to focus instead on medical literature and government data.

In the first episode, Strong creates a highly dramatic, but erroneous opening scene. While being questioned by a federal prosecutor, Dr. Samuel Finnix (Michael Keaton), a fictional general practitioner, is asked under oath, “What do you think caused so many deaths in such a short period of time?”

Flashbacks intervene before Finnix states, definitively: “OxyContin.” The prosecutor then hammers home the point by asking, “So just to be clear, you are blaming numerous deaths in your region on just one medication?” And with a heavy-heart, filled with prescriber regret and his own addiction stigmatization, Finnix states, “Yes.”

This total condemnation of Purdue, the Sackler family and OxyContin resides entirely in the realm of fiction. We know from a 2012 Bloomberg BusinessWeek exposé on Florida pill mill operators that it was actually oxycodone and hydrocodone-based generics that were fueling opioid use disorder. It is this type of dangerous, OxyContin-pincered misinformation that has propagated a national misunderstanding about opioids, and kept us from moving from blaming to healing.

Rather than the devoutly religious and close-knit Mallum family, who earn their daily bread through hard work in West Virginia’s mines, the Hulu series has the Sacklers sitting down to meet at opposite ends of a table, as opposed to holding hands in prayer. The Sackler family is separated into those who have “A Shares” and those with “B Shares” in Purdue -- a split that divides the heirs and sees them wrestle over profits. As depicted in the series, the Sacklers are not a family, but a business, through and through.

Fictionalizing the Truth

The time-leaps throughout this eight-part series are anchored on the discoveries of law enforcement as it digs deep into Purdue Pharma. But this organizing principle proves thoroughly dizzying, obfuscating the “human interest” element that makes up much of Macy’s book.

Because the series is also determined to paint physicians and patients in an antagonistic relationship, we end up with just two fictional representations of “doctors” and “patients” -- Keaton’s Dr. Finnix and Dever’s Betsy Mallum, whose characters were explained by Strong in a 2021 interview with NPR, in which he praised the merits of not being “stuck to the truth.”

“If I made these characters composite characters, I get way more of these anecdotes into these arcs with fewer characters and get more truthful stories into the show," Strong said. "By fictionalizing, [emphasis added] I wouldn't be stuck to the truth of one person's life. I could use as many anecdotes as I wanted. I could achieve a more universal truth; a higher truth."

Dr. Finnix is the epitome of a “composite character” into whom most material and several arcs are heavy-handedly stuffed. He is emblematic of a problematic prescriber. We only meet three of his patients in detail — Mallum, his ex-miner patient Jonas, and a young woman named Elizabeth-Anne — all of whom become addicts. Finnix himself becomes addicted, getting high on his patients’ diverted supply. This distillation of Finnix cannot be taken as a “more universal truth,” even in a meager sense, as we shall explore.

The mechanism by which Finnix becomes addicted to OxyContin happens in a flash that straddles two episodes. One moment he is the ever-attentive country physician, happily working 16-hour days, making night calls to elderly patients with dementia to ensure all their daily meds have been duly taken, attending to the injuries of his coal-mining patients, and often delivering their children.

Finnix is a man of simple pleasures; he enjoys fishing with members of the Finch Creek community of which he forms the responsible backbone, until the devil invades the town in the form of OxyContin. Upon receiving a call about an explosion in a mine that has left several workers in critical condition, he speeds back to Finch Creek from a visit to Washington D.C. to see his late-wife’s sister, who has encouraged him to start dating again.

In his haste, Finnix doesn’t buckle-up and is T-boned by another vehicle. He suffers several broken ribs in the accident and is prescribed 20mg of OxyContin, much to his surprise, as he usually starts his patients on 10mg tablets.

Cut to Episode 4, entitled “Pseudo-Addiction.” Without any explanation of why the hitherto cautious prescriber has not had follow-up treatment with an independent physician -- we see Finnix cast in utter damnation, diverting OxyContin prescriptions for his own personal use. Presumably, adding another physician to the story would have taken up too much screen time, and undone the drama of Keaton’s lone composite character.

Dependency and Addiction

Let’s pause for a moment to unpack Strong’s haste. It is again based on a conflation made by Macy, who fails in her book to differentiate between the medical terms “dependency” and “addiction.” This is a false narrative. Addiction and dependence are related, but cannot be equated, and should not be conflated. Many drugs, including antidepressants and anticonvulsants, can cause such physiologic adaptation that abrupt withdrawal can cause serious, even life-threatening events. This is the case with opioids, too.

But being dependent is not the same as being addicted. And by not using the term “dependency” extensively in her book, Macy paints a false picture that hyperbolizes all opioid use, prescription or illicit, as inherently a kind of addiction -- when there are millions of people with chronic pain dependent on opioids, but not addicted.

Interestingly, Strong’s series does use the word “dependency” once, in Episode 4, via a nameless, testifying physician character, and in a scientifically false and unhelpful way. With cuts to Finnix locking the last of his patients’ diverted pills in a glass kitchen cabinet, before smashing said cabinet to smithereens, the unnamed physician states, “Opioids are uniquely challenging as they can change a person’s brain chemistry. But in a desperate effort to end the cycle of dependency, some people try to quit cold turkey, but the results can often be disastrous.”

It is important to note that this moment in the series can be enlarged by turning to statements made by Strong in an interview on MSNBC’s Morning Joe, in which he claimed that “you can be addicted in three days” to OxyContin.

That is blatantly false. Neural adaptation can occur as soon as ingesting the first pill. But this is not necessarily problematic, it is simple science and occurs with many drugs, not just opioids. The claim that you can become addicted to opioids in three days is simply not true, and there is no scientific evidence to support this statement. Physical dependency, which they clearly conflate with addiction, is not even a medical problem at day three, day seven, or day fourteen. It may never even become a problem.

But this question cannot even be properly attended to until the differentiation between addiction and dependency is substantiated in these depictions. Respectfully, how can Strong purport to “redefine our understanding” of something that he himself does not understand? 

Strong’s need to distill information is so extreme that Dr. Finnix is funneled into an OxyContin-self-prescribing-and-diverting-monster between the rolling of one set of credits and the opening of a new episode.

Strong’s MSNBC interview is hyperbolically backdropped by a hysterical graphic claiming over 760,000 overdose deaths — a conflated statistic that doesn’t distinguish what drugs caused the deaths. Was it OxyContin? Oxycodone? Hydrocodone? Heroin? Cocaine? Methamphetamine? Poly drug use?

Whether the deaths were due to illicit misuse, diverted pills or legitimate prescriptions is also ignored. We are only told by the reporter conducting the interview that, “OxyContin is the brand most people know.” Indeed. The opioid epidemic has become a cash-cow for misrepresentation.

MSNBC

It is important to note that pseudo-addiction is also mischaracterized in the Hulu series. It is used as a mechanism to accuse Purdue Pharma of encouraging irresponsible over-prescribing, when in fact it attends to patients in a state of severe “uncontrolled” pain. Uncontrolled pain is as devastating as it sounds, especially when we have means to treat it.

Once again, it is a concept that should be considered scientifically and medically, not simply as a harmful concept “invented” by Purdue for profit gains. Uncontrolled pain was not invented by Purdue at all, and has been studied from as early as 1989, before being expanded into the use of opioids for responsible pain management and becoming common amongst pain specialists for over three decades.

‘Selling Poison’

Dr. Finnix follows a similar path as the composite “addict” character, Betsy Mallum: from OxyContin use to chronic opioid abuse. He never moves to heroin, but he does buy OxyContin illicitly, while being schooled by a local drug dealer on how to get a faster high by crushing and snorting the pills through a straw.

It's not long before Finnix’s collapse is total. He has begun to behave uncharacteristically, beating his Purdue sales rep before manhandling him out of his office for “selling poison.”

The axe finally drops in a grizzly scene when Finnix is high during a surgical procedure. Then, while accompanying his now butchered patient to the ER, he complains to the attending doctor of rib-ache and requests OxyContin unabashedly. The doctor offers him a 10mg tablet, but Finnix ups the request to a 20mg pill in a manner that paints him as perhaps the most suspicious doctor-shopping-doctor imaginable.

The onus of representation for the addict group falls mostly on Betsy Mallum (Dever), who, when quizzed in an interview with Entertainment Weekly over the fact/fiction nature of her character replies: “Yes. She's a fictional character that represents a lot of people.”

Betsy is the first patient that Dr. Finnix turns into an addict. She receives the “First-Bottle” of OxyContin, to borrow Episode 1’s title, and uses the pain medicine to continue to work at the mines despite an excruciating work-related injury.

There are two points of note here: Finnix prescribes OxyContin to her with strict instructions for when to take the pills -- one in the morning and one at night -- which Betsy does. He also provides the appropriate advice of a rest period from her grueling work in the mines. He offers to go down and talk to management himself in order for the young woman be able to take a break to aid her physical healing. Betsy does not take his advice.

This is because of the important part the socioeconomic environment plays in Betsy’s crucial and unexamined predisposition toward addiction and substance abuse disorder. She knows how the mining industry works and that, in her father’s own account, she is the smallest "but strongest” one down there.

Betsy therefore has the obligation of needing both to retain her work: she’s a small-statured female and knows she is at high-risk for disposability in a shrinking industry, but she must also fulfill a need for validation from her domineering and deeply religious father. A father who would cast her out if she were to reveal her true self: her sexuality as a lesbian involved in a behind-closed-doors relationship with fellow mine worker, Grace.

This moves us on to a pivotal point. Even though Betsy is the recipient of the “first bottle,” she dumps her prescription by Episode 3, “The Fifth Vital Sign,” without tapering of any kind and without informing Dr. Finnix. Subsequently, she descends into a world of illicit diverted pills and eventually heroin. It is the latter drug that takes her life, the night before she is to enter a Suboxone treatment program and after a conversation with Grace, when she finds out that her first love can only be a friend moving forward.

Due to her addiction, Betsy never manages to make “enough money underground” to move to Grace’s Eureka Springs, Arkansas; a real place that Grace describes to Betsy as “Oz for country queers.” Devoid of hope after losing her first love, Betsy informs her flop house drug dealer that she is entering a Suboxone treatment center the following day. “So give me one hell of a sendoff,” she states as her final, fatal words.

The Fifth Vital Sign

To move beyond the episode’s sign-posting, the show depicts the medical community’s adoption of pain as the “Fifth Vital Sign” as a ploy to fuel over-prescribing. At the time the phrase was introduced, pain was vastly under-treated, there was a pressing need to bring attention to the unmet needs of chronic pain sufferers across the nation, and to facilitate dialogue between physicians and their patients to assess their pain levels and explore treatments — with opioids being just one — to increase their quality of life.

Introducing pain as a “vital sign” was an entirely reasonable pathway to take by the medical community. Although it is reasonable to argue that pain is not a vital sign in the way that breathing and heart beats are, it is nevertheless vital to assess pain.  But once again, it was not a Purdue “invention” as the show would usher you to believe, it was first discussed by Dr. James Campbell in an address to the American Pain Society in 1995. The term has faced some controversy, but it was well-intentioned.

What Macy failed to do in her mishaps over medical research in her book, which led to Strong’s OxyContin demonization, does not befit an analysis of the overdose death of Betsy Mallum. Per scientific examination, the pivotal 1998 CDC-Kaiser Permanente Adverse Childhood Experiences (ACE) study used ten different measures of adverse childhood experiences, drawing the conclusion that that “for each traumatic event that happened to a child, they were two to four times more likely to grow up to be an addicted adult.”

The one we can outline as specific to Betsy is “parental rejection.” This is what she fears the most. When Betsy attempts to come out to her mother by stating that she “likes girls… always have… and not just as friends,” her words fall on deaf ears, with her mother quite literally pretending she didn’t hear the utterance: “Did you say something dear?”

It’s a statement Betsy’s mother later regrets, realizing its impact, but by then it is far too late. Finnix’s pre-OxyContin-addiction fishing trip during which he tries to irk Betsy’s rigid father into the enlightened mindset that being gay is not a sin but just a state of being, also misfires and leads to a demonizing, make-no-mistake style dinner scene.

Unable to live as her true self through fear of rejection and in the throes of withdrawal, Betsy burns the false-self: the one that is content sitting at home and knitting quilts with her in-denial mother.

When the news of her death is revealed, we see the camera focus on a picture of Betsy as a young child. This is also emblematic of denial; but this time not of the fictional Mallum family alone, but also of the filmmakers and Macy, who push for the narrative of the destruction of innocence via the opioid scourge.

Addiction’s Root Causes

The Mallum parents, through the zealot foisting of religion on a girl who “never believed in any of that stuff anyway,” did their daughter a deathly disservice. And they are more culpable for her death than Purdue Pharma or Dr. Finnix.

Betsy had a predisposition for substance abuse disorder, but Finnix did not. Although in Episode 4 we see him in a hallucinated waltz with his deceased wife, he seems content as a widower — although the dance scene does belie his underlying existential pain.

The filmmakers didn’t even throw in any trite backstory or anecdote of Finnix having an alcoholic father or brother — a detail that would barely be substantiating for predisposition per today’s medical rigor over addiction’s root causes. But it would have at least stimulated the viewer into questioning why this character had morphed so horrifically and so expressly.

The young Betsy, on the other hand, has a story of her own and one that would undeniably predispose her to substance abuse. Despite Strong’s claims, one must stick to individual stories to understand addiction, its roots, and the specific drugs that may come to fuel it.

By choosing to fictionalize via character composites, and by picking a “patient” so heavily predisposed to substance abuse disorder due to ACE and environmental factors, Dopesick doesn’t adequately represent the patient side of the doctor-patient relationship at all. The human element that is strong-armed into Finnix and Betsy is loaded for downfall, because that makes for good viewing.  One arc is devastating — Betsy’s — and Finnix’s is convoluted, although redemptive in the end.

Covering all bases in this fashion is hyper-unrealistic, difficult to digest, and self-serving on the part of the filmmakers in their need to enthrall their audience.

‘We Have Another Pharma Case’

There is another clandestine narrative at work in Dopesick. A prosecutor fights prostate cancer as he tries to bring Purdue to justice. After waking from a surgical procedure to remove the cancer, even while semi-conscious and in extreme post-surgical pain, he is aghast at the insistency of a nurse who tries to “force” OxyContin upon him. Heroically, he refuses and relays the tale back to his boss, who declares he made the “right choice” to fight the pain with the over-the-counter, non-narcotic Motrin.

What makes the parallel between the prosecutor and Finnix so powerful is that both characters moved from bigger towns to small West Virginian areas and both describe this life choice as the “best decision I ever made.”

The difference between the two characters is that good old Dr. Finnix, the responsible and attentive physician, falls prey to addiction almost immediately, while the representative of law enforcement holds strong.

Per the narrative of the “Iron Law of Prohibition” that this show peddles, representatives of the law must be invulnerable. The show pushes this weak theory clearly. After all, who could be more of a “drop out” than a physician, who is the biggest threat? It’s not the Sacklers, if we follow the human element, but prescribers.

This good/bad dichotomy is cemented in the last statement made by the chief prosecutor of his future plans: “We have another pharma case we’re looking into…” Tellingly, the drug company is not named, perhaps because it couldn’t be.

The fight for pharmaceutical anti-opioid justice is a good story and resonates with the public. But as a society, perhaps we should focus on addiction and its role in the human condition. Treating addiction, as opposed to distilling and misleading the public about its causes, might be a better way to slow the continuing rise of drug overdoses in America.

(Update: Dopesick won two Emmys, for outstanding lead actor and outstanding cinematography.)

Lynn R. Webster, MD, is Senior Fellow at the Center for U.S. Policy (CUSP) and Chief Medical Officer of PainScript. He also consults with the pharmaceutical industry. Lynn is the author of the award-winning book The Painful Truth, and co-producer of the documentary It Hurts Until You Die.

Hazel Shahgholi is a senior editor and journalist based in New York City. Her most recent roles include Deputy Editor of amNY Metro, Editor in Chief of The Bronx Times, and Production Editor for MedPage Today.

Drug Tests Show Pain Patients on Opioids Less Likely to Use Illicit Drugs

By Pat Anson, PNN Editor

In an effort to reduce soaring rates of drug abuse and overdoses, many physicians have taken their pain patients off opioids and switched them to “safer” non-opioid drugs like pregabalin, gabapentin and duloxetine. Others have encouraged their patients to try non-pharmacological treatments, such as acupuncture, massage and meditation.

That strategy may be backfiring, according to a large new study by Millennium Health, which found that pain patients prescribed opioids are significantly less likely to use illicit drugs than pain patients not getting opioids.

The drug testing firm analyzed urine drug samples from 2019 to 2021 for nearly 55,000 patients being treated by U.S. pain management specialists. About 80% of the patients were prescribed an opioid like oxycodone or hydrocodone, while the other 20% were not prescribed opioids.

Millennium researchers say detectable levels of illicit fentanyl, heroin, methamphetamine and cocaine were far more likely to be found in the urine of non-opioid patients than those who were prescribed opioids. For example, illicit fentanyl was detected in 2.21% of the patients not getting an opioid, compared to 1.169% of those who were. The findings were similar for heroin, methamphetamine and cocaine.

“In all cases, we found that the population that was not prescribed an opioid was significantly more likely to be positive for an illicit drug than those patients who were prescribed opioids,” said lead author Penn Whitley, Director of Bioinformatics at Millennium. “(There was) a 40 to 60 percent increase in the likelihood of being positive if you were not prescribed an opioid.”

Illicit Drug Use By Pain Patients

MILLENNIUM HEALTH

What do the findings mean? Are pain patients getting ineffective non-opioid therapies so desperate for relief that they’re turning to illicit drugs? That’s possible, but the study doesn’t address that specifically.

Another possibility is that patients on opioids are simply being more cautious and careful about their drug use. Opioid prescribing in the U.S. has fallen by 48% over the past five years, with many patients being forcibly tapered or abandoned by doctors who feel pressured to reduce their prescribing.  

“Unfortunately, a lot of people with chronic pain have learned that it’s a bit tenuous, that their doctors are feeling pressure, and if they want to maintain their access (to opioids), they need their PDMP (Prescription Drug Monitoring Program) and their drug tests to look the way they need to look, so their doctor can feel comfortable continuing to prescribe,” said co-author Steven Passik, PhD, VP of Scientific Affairs and Head of Clinical Data Programs at Millennium. “I do think they realize that they’re on a treatment and that access to it is not guaranteed.”   

Preliminary findings from the study were released today at PainWeek, an annual conference for pain management providers. The findings mirror those from another Millennium study earlier this year, which found that pain patients have lower rates of illicit drug use than patients being treated by other providers.     

“If your main way of protecting people in pain from getting involved in substance abuse is to limit their access to opioids, there’s at least a hint here that’s not the right approach,” Passik told PNN. “It’s not a definitive statement by any stretch of the imagination, but it’s an approach to patient safety that leaves a bit to be desired.”  

Another recent study at the University of Texas also found that restricting access to opioids is “not a panacea” and may even lead to more overdoses.  Researchers found that in states that mandated PDMP use, opioid prescribing decreased as intended, but heroin overdose deaths rose 50 percent.

“Past research has shown that when facing restricted access to addictive substances, individuals simply seek out alternatives rather than limiting consumption,” said lead author Tongil Kim, PhD, an assistant professor of marketing at University of Texas at Dallas. “In our case, we measured overdose deaths as a proxy and found a substantial increase, suggesting that the policy unintentionally spurred greater substitution.”

My Renewed Fight for Disability

By Mia Maysack, PNN Columnist

There are millions of people who are figuratively standing in line, waiting to be granted benefits under Social Security Disability Insurance or SSDI. It usually begins with a person filing a disability application on their own behalf, declaring that they are unable to work, followed by the certification of medical professionals. They are the first baby steps in what can be a very long process. My application took four years before it was approved.

To get it, I represented myself in a court of law and essentially begged on my knees, pleading with detailed reasoning as to why my personal situation affects and at times strictly prohibits any version of what could be considered my working “ability,” let alone “normalcy.”

Not too long ago, I received a notice that a decision was to be made on whether or not I still live with a post-bacterial meningitis related traumatic brain injury that causes intractable and chronic mega-migraines, along with cluster headaches and nerve damage. I do, in case anybody was wondering.

But after two Social Security assigned medical reviews, it was declared that I am no longer disabled. News to me! The memo must have gotten lost because my body has yet to receive it.

Having worked since the age of 14, up until a few years ago, and only after pushing myself almost to the point of death, the disability checks I’ve been receiving consist of money I contributed to the taxpayer pot. I was grateful for it, knowing that many others have it worse in their own ways, even though the dollar amount is limited to covering a shelter over my forever hurting head.

The gift has been not to have to wrack my brain any further, figuring out where I can live. This has been a blessing, because I am then able to promote the full-time job that is self-care demanded by my ailments.

Constructing a non-mainstream path and not allowing challenges to completely dictate or entirely limit my overall quality of life does not lessen what I endure. Nor does it suggest having been cured or even improved.

It is generally understood that a governing “system” is in place to protect those of us who are not attempting to cheat or scheme to get disability. But let me tell you, our skeletal, muscular, nervous, endocrine, cardiovascular, lymphatic, respiratory, digestive, urinary and reproductive systems are continuously being violated and discriminated against by that very same “system.”  

The mourning of past lives and broken dreams is a permanent condition for me. The trauma of living and reliving what has transpired never ends. My symptoms are chronic and unpredictable, which inconveniences no one more so than it does me.

My body, my rights?  My ass.

Whether I can walk on the date of my upcoming appeal or have to crawl, I’ll fight however I can to make these points heard on behalf of everybody.           

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. Mia is also the recipient of the International Pain Foundation’s “Hero of Hope” award for 2022.

CRPS Is a Bad Name for a Painful Disease

By Dr. Forest Tennant, PNN Columnist

A few years ago, the “pain powers” of the day decided to change the name of a mysterious painful disease called Reflex Sympathetic Dystrophy (RSD) to Complex Regional Pain Syndrome (CRPS). 

Not long after the name change, I received a telephone call from a reporter who mistakenly believed that “CRPS” meant that chronic pain statistics were now going to be kept by geographical regions.  He wanted to know which regions had the least and worst pain problems.  He sounded rather despondent when I informed him the regions weren’t geographic areas, but referred to parts of the body. 

After a sigh and pause, he asked how many regions there were and where they were located on the body.  I finally had to admit that although I was familiar with legs, arms, buttocks and ears, I hadn’t been able to come to grips with exactly what the body’s regions were or where they were located, as they weren’t mentioned in Gray’s Anatomy.  The reporter apologized for bothering me and said he thought he would focus on prostate issues instead.

Not long after I disappointed the reporter, I attempted to obtain a prior authorization to pay for CRPS medications from a patient’s insurance company.  I had mistakenly assumed that the label CRPS had reached the bowels of the insurance industry, but a grouchy lady on the phone informed me that her insurance company didn’t recognize regional pain and only paid for legitimate painful diseases.  Furthermore, she questioned my ability and sanity, accusing me of creating a fraudulent diagnosis.  At this point, I rightfully decided the CRPS label may have problems!

These episodes underline the point that lots of people with CRPS are being poorly treated due to a name that doesn’t even sound like a legitimate disease or disorder. Their very real illness goes unrecognized and payment for treatment is often denied by their insurance.  At best, the CRPS label trivializes a condition that can be so severe as to force a person into bed, endure great suffering, and die before their time. 

The history of the name CRPS is most telling.  A British surgeon named Alexander Denmark wrote the first known description of a disease like CRPS in about 1812.  He described a soldier injured by a bullet this way:

“I always found him with the forearm bent and in supine position and supported by the firm grasp of the other hand. The pain was of a burning nature, and so violent as to cause a continual perspiration from his face.” 

Another physician who was working with wounded Civil War soldiers, Dr. Silas Weir Mitchell, published his findings in a 1864 monograph entitled “Gunshot Wounds and Other Injuries.” Mitchell described the basic injury as burning pain located in close proximity to the battle wound.  He also described the well-known characteristics of the disorder, including glossy red or mottled skin without hair, atrophic tissue, and severe pain caused by touch or movement. 

In his 1872 book, “Injuries of Nerves and Their Consequences,” Mitchell coined the term “causalgia” which he derived from the ancient Greek words kauaoc (heat) and oayoc (pain) to emphasize the nature of the disorder.

The term causalgia remained in place until about 1946, when Dr. James Evans, a physician at the Lahey Clinic in Burlington, Massachusetts, described 57 patients with injuries similar to those labeled causalgia by Dr. Mitchell.  Evans described his patients as having intense pain and clinical signs that he explained as being due to “sympathetic stimulation.” The patients experienced rubor (redness), pallor, and a mixture of both sweating and atrophy.

This syndrome would appear after fractures, sprains, vascular complications, amputations, arthritis, lacerations, or even minor injuries.  Evans found that sympathetic nerve blocks usually relieved the pain, so he rejected the term causalgia and gave it the name Reflex Sympathetic Dystrophy (RSD).

The name RSD pretty well replaced causalgia until 1994, when the International Association for the Study of Pain (IASP) changed it to Complex Regional Pain Syndrome (CRPS).  This change was led by the renowned pain specialist John Bonica, MD, who wanted to shift the focus away from the terms dystrophy, reflex and sympathetic back to pain. 

This argument for the change had validity, in that the condition doesn’t really have a reflex component and sympathetic blockades do not consistently relieve pain.  Also, dystrophy is medically defined as tissue degeneration, such as that caused by diseases of nutrition or metabolism. The IASP wanted the primary focus to be on pain.

Unintended Consequences

While the name changes from causalgia to RSD to CRPS were intended to bring better pain relief to needy patients, there have been several unintended consequences.  In fact, a reasonable argument can be made that the name change has been counterproductive. 

What should CRPS now be called?  It’s doubtful that a new consensus could be quickly developed, as the syndrome is complex and involves multiple issues. 

Frankly, I personally believe we should junk the term CRPS. It trivializes a most serious disorder, and I have found use of the name CRPS actually deprives some patients of the treatment they need.  I have often simply used the term “vascular neuropathy” to effectively educate pharmacies, families, insurance companies and patients about the condition.  At least this term sounds legitimate and serious!

Fortunately, regardless of its name, the syndrome appears to be diminishing both in incidence and severity.  Workplace injuries and vehicular accidents get immediate attention these days, while early medical and physical interventions usually prevent great severity. 

Also, there is now an understanding of centralized pain and its electrical discharges, which are greatly responsible for the so-called “sympathetic” symptoms of the disorder.  Treatments for centralized pain are clearly benefitting persons with this unfortunate disorder, regardless of whatever name you wish to call it.  I would call for a name change but I don’t know who to call!

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis through the Tennant Foundation’s Arachnoiditis Research and Education Project and the Intractable Pain Syndrome Research and Education Project.

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

A Pained Life: We’re Not ‘Normal’ So Don't Expect Us To Be

By Carol Levy, PNN Columnist

I recently contacted a local social service agency for help. They sent a social worker and wonderful lady, Margaret, to come to my home.

The first thing she did was a “depression inventory,” a questionnaire required by the service. The questions were pro forma, and if I was a “normal person” were probably an appropriate way to see if I was suffering from depression. For someone in chronic pain, not so much.

Margaret asked me, “Are you basically satisfied with your life?”

The choices were “Yes” or “No.” The questionnaire allowed for no other answer.

No, I am not satisfied with my life. I am mostly housebound, due to trigeminal neuralgia pain and the fear of triggering more pain if I go out. My reasons for being dissatisfied with my life are legitimate. It is not a sign of depression, but of my reality.

“Have you dropped many of your activities and interests?” Margaret asked. Yes, if you mean since the pain started 40 years ago. If you mean more recently, then the answer is no.

“Do you often get bored?” Of course, I do. I am home most of the time. My eye pain interferes with reading, writing or even watching a movie if there is a lot of movement on the screen. I spend a lot of time with the TV on, as background noise, and sitting in a chair or bed waiting for the hour hand to move so the day is closer to its end.

That sounds like depression. But for me, it's not. It's merely my life.

“Were my spirits good?” Easy answer. See the above.

My neurosurgeon told me there are no more treatments or surgical possibilities for me. They all have unknown risks and it’s not certain they would help. So, when I was asked, “Do you feel helpless?” and “Do you feel hopeless?'” my answer was yes to both questions. Because my situation is hopeless and helpless. The medical profession has told me so.

Margaret’s next question; “Do you prefer to stay at home rather than go out and do new things?” could have been two questions for me: "Do you prefer to stay at home?' No, I don't. "Would you prefer to be able to go out and do new things?" Yes, I would, but the pain won't let me.. 

“Do you think most people are better off than you?” was the last question. And the hardest for me to answer. In one sense, yes, because most people don't have chronic pain and they're not housebound. But I am in good shape physically, absent the eye and face pain, and my brain and mind work well. I am independent. So no, they are not better off than me. 

It all depends on the slant of the questions and the slant of the answers. 

Most of Margaret’s questions are not intended for people in pain. I don't expect them to make ones specific for the pain community and I'm not sure, given the spectrum of chronic pain and disability, if that is even feasible.  

We need to be seen for what we are. We are not “normal,” so please stop expecting that of us. 

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.

Heavy Metals and Plastic Residue Found in Many CBD Products

By Pat Anson, PNN Editor

Yet another study has found evidence that cannabidiol (CBD) products are frequently mislabeled, with over half of the edibles and topicals tested containing significantly more or less CBD than their labels indicated. Researchers at the University of Miami School of Medicine also found that many CBD products are contaminated with low-levels of heavy metals and plastic chemicals.

“Because the cannabis plant is recognized as a bioaccumulator, which is highly effective at absorbing and retaining contaminants (e.g., heavy metals) in soil, it is important to characterize the degree of contamination in CBD products and their label accuracy to better estimate potential health benefits and risks associated with consumption,” researchers explained in the journal The Science of the Total Environment. 

Investigators analyzed 516 CBD products that were purchased online or at retail stores and had them tested at Ellipse Analytics in Denver. About a quarter of the CBD products were edibles.

Less than half of all the products tested had CBD concentrations within 10% of their label claims. Forty percent of the products contained significantly less CBD than claimed by the manufacturer, while 18% contained significantly more CBD.

Of the edible products analyzed, 42% tested positive for the presence of lead, 37% tested positive for mercury, 28% tested positive for arsenic, and 8% tested positive for cadmium. Most contained only trace amounts of heavy metals, but four edibles had lead levels that exceeded California’s recommended limit for daily lead consumption.

THE SCIENCE OF THE TOTAL ENVIRONMENT

Many of the edibles also contained low levels of plastic chemicals – known as phthalates – that are designed to make plastics more flexible. Phthalates leach off plastic and have become pervasive in the air, soil and water. Some phthalates have affected the reproductive systems of animals, although their impact on human health is not clear.

The percentage of CBD edibles with detectable phthalate concentrations ranged from 13% to 80% across four phthalates, with DEHP being the most prevalent. DEHP has been linked to cancer, birth defects and other reproductive harm. Federal law prohibits the manufacture and sale of children’s toys and child care products containing DEHP at levels greater than 0.1%. 

“Low-level contamination of edible CBD products with heavy metals and phthalates is pervasive. There is substantial discrepancy between the product label claims for CBD potency and the amount measured in both edible and topical products, underscoring the need for tight regulations for CBD product label integrity to protect consumers,” researchers concluded.

“Given that the consumer demographic purchasing CBD products includes those afflicted with pain, insomnia, anxiety, and other health conditions, these findings could give consumers and medical practitioners hesitation about the benefits and potential harm of CBD use.”

The study was funded by Jazz Pharmaceuticals and the Clean Label Project, a non-profit that seeks to improve food and consumer product labeling.

Previous studies have also found that many CBD products are mislabeled. A recent study at the University of Kentucky College of Medicine found that only half of the CBD oil products had concentrations of cannabidiols that were within 10% of their label claims. Researchers also found that most CBD oils contained trace amounts of THC (tetrahydrocannabinol), the psychoactive substance in cannabis, including some oils that were labeled "THC Free."

Time to Reject the Label ‘Failed Back Surgery Syndrome’

Dr. Forest Tennant, PNN Columnist

In our research studies on Adhesive Arachnoiditis (AA), a high percentage of patients tell us that their doctors have said the cause of their pain is “Failed Back Surgery Syndrome” (FBSS).

This misnomer and poor excuse for a diagnosis has fortunately been rejected “out-of-hand” as a cause of pain by most upscale physicians. After all, FBSS is neither a disease nor a symptom. We can do better in 2022.

Some three or four decades ago, FBSS became a popular moniker used by most physicians, including this author. Why? Patients who had back pain underwent surgery, which was technically and expertly done, but the pain didn’t go away. This situation was a mystery in times past, but the label FBSS should never be used or applied in this day and age.

Today, magnetic resonance imaging (MRI) has advanced so much since its invention in the late 1980’s that painful disorders and diseases of the spine can almost always be diagnosed. There is now a technique called “contrast MRI” that allows a clear distinction to be made between spinal fluid and solid tissues, including the spinal cord, discs, nerve roots and covering of the spinal canal.

In our recent research studies, we have reviewed contrast MRIs in well over 200 persons who have been labeled as having FBSS. Every person had one or more obvious reasons to have chronic pain, despite well-done, competent surgery. For example, our reviews have found discs that have protruded, adhesive arachnoiditis, epidural fibrosis, spondylolisthesis, Tarlov Cysts, arthritic vertebra or other good, solid reasons to have pain, regardless of surgery.

Let’s be clear. Spine surgery may be necessary for a number of reasons, the most common being significant herniation of a disc or collapse of vertebrae that may dangerously compress the spinal canal. It also may be fair to say that a lot of surgery can now be avoided, since eminent danger and need for surgery is pretty clear cut on modern, contrast MRI’s.    

In addition to contrast MRIs, we now have good diagnostic tests for inflammation, autoimmunity and genetic connective tissue disorders, which are emerging as legitimate causes of severe, chronic back pain that hasn’t responded to chiropractic, physical therapy, anti-inflammatory agents and corticosteroid injections.

Put simply, the diagnostic evaluation of severe chronic back pain needs a contrast MRI and specific diagnostic tests rather than a non-descript, “wastebasket” diagnosis like FBSS.

Perhaps the worst thing about the label FBSS, is that it is easy to apply and avoids the time, money and knowledge to make a specific diagnosis. These excuses to avoid a specific diagnosis must now be rejected because we have the diagnostic and treatment measures to better the lives and health of those who suffer from severe chronic back pain.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis through the Tennant Foundation’s Arachnoiditis Research and Education Project and the Intractable Pain Syndrome Research and Education Project.

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

DEA Warns of ‘Rainbow Fentanyl’ Targeting Kids

By Pat Anson, PNN Editor

At first glance, they look like candy. Brightly-colored tablets in shades of pink, purple, yellow and green. Not unlike a bag of Skittles or a bowl of Fruit Loops.

But they’re not sweet treats. They’re the latest version of “Mexican Oxy” – counterfeit oxycodone pills laced with fentanyl, stamped with an “M” on one side and “30” on the other. Typically blue in color – like authentic oxycodone – the pills increasingly come in a variety of colors, what law enforcement agencies call “rainbow fentanyl.”

In recent weeks, rainbow fentanyl has been found in 18 states, including an August 17 bust at the Arizona border with Mexico, where over 15,000 of the colorful pills were found strapped to a smuggler’s leg.

It was the second consecutive day rainbow fentanyl was intercepted at the port of Nogales, a possible sign that drug cartels are targeting younger users.

“Rainbow fentanyl — fentanyl pills and powder that come in a variety of bright colors, shapes, and sizes — is a deliberate effort by drug traffickers to drive addiction amongst kids and young adults,” DEA Administrator Anne Milgram said in a statement that warns of the “alarming emerging trend.”

HOMELAND SECURITY IMAGE

The DEA says rainbow fentanyl is being seized in multiple forms, including blocks that resemble the chalk a child might use to color a sidewalk. A recent drug raid in Portland, Oregon turned up several powdered blocks of rainbow fentanyl, along with meth, heroin, hundreds of fentanyl pills and a small armory of guns.

“Deputies are particularly concerned about rainbow fentanyl getting into the hands of young adults or children, who mistake the drug for something else, such as candy or a toy, or those who may be willing to try the drug due to its playful coloring. The powdered fentanyl found during this investigation resembles the color and consistency of sidewalk chalk,” the Multnomah County Sheriff’s Office said in a statement.

“We are seeing more powdered fentanyl that is dyed in various colors. The strength can vary but is typically stronger than pressed pills,” said Kelsi Junge, Harm Reduction Supervisor for Multnomah County.

Some colors are believed to be more potent than others, a claim that has not been confirmed by DEA laboratory tests.  

No matter the color or shape, rainbow fentanyl is dangerous. Fentanyl is a synthetic opioid that is 50 times more potent than heroin and 100 times more potent than morphine. Just two milligrams of fentanyl, similar in size to 10-15 grains of salt, is considered a lethal dose. 

Because illicit fentanyl is cooked up in makeshift laboratories by amateur chemists, the potency of the pills or powder varies considerably.

MULTNOMAH COUNTY SHERIFF

The DEA says most of the illicit fentanyl in the United States is supplied by two Mexican drug cartels, the Sinaloa and Jalisco New Generation cartels, although there is no shortage of Americans willing to transport the drugs or turn them into tablets with pill presses.

“The men and women of the DEA are relentlessly working to stop the trafficking of rainbow fentanyl and defeat the Mexican drug cartels that are responsible for the vast majority of the fentanyl that is being trafficked in the United States,” said Milgram.

Fentanyl is a potent analgesic that is prescribed legally for severe pain, but it is illicit fentanyl and its analogues that are responsible for the vast majority of drug deaths. According to the CDC, over 107,000 Americans died of drug overdoses in 2021, with two-thirds of the deaths linked to fentanyl.

FDA Conducting Review of Opioid Regulations

By Pat Anson, PNN Editor

The U.S. Food and Drug Administration has launched an extensive review of its opioid regulations, with the goal of reducing overdoses and making revisions “to support appropriate use of opioid analgesics.”

In a blog post, FDA commissioner Robert Califf, MD, acknowledged the overdose crisis has “evolved beyond prescription opioids” and is now largely driven by illicit fentanyl and other street drugs. But he was vague about whether FDA would loosen restrictions on opioid pain medication or tighten them further.

“While the FDA’s previous strategies have largely focused on opioid use and overdoses, the evolving nature of the overdose crisis calls for both a new approach and honest reflection about what the FDA can do differently moving forward,” Califf said. “For example, during my confirmation process, I committed to undertaking a review of our opioid decisions, including labeling. We have initiated this review with the intended goal of understanding what revisions are needed to support appropriate use of opioid analgesics. Our ‘lessons learned’ will actively inform our future approach.”

One of the lessons learned by the CDC over the past few years is that rigid opioid prescribing guidelines have been harmful to patients and need to be “individualized and flexible.” The agency is currently in the process of revising its 2016 opioid guideline, with the goal of releasing an updated guideline late this year.

It’s not clear if the FDA is moving in a similar direction. One of the priorities for the agency’s new Overdose Prevention Framework is to “improve pain management and patient outcomes” – not by making opioids more accessible, but by reducing “unnecessary initial prescription drug exposure and inappropriate prolonged prescribing.” 

Califf said the agency was studying the need for mandatory prescriber education about opioids, including a national continuing education program about the use of opioids to manage pain. Most medical schools in the U.S. and Canada do not require a course in pain education and few even offer pain management as an elective.

The FDA may also tighten the rules for getting new opioids approved, including a requirement that drug makers demonstrate that their products offer material safety advantages over existing opioid analgesics. At the same time, the agency is planning to release new guidance to speed up the development of non-opioid and non-addictive treatments for chronic pain.

This is the 70-year old Califf’s second stint as FDA commissioner, having previously served in that role during the Obama administration. He was confirmed for a second time by the U.S. Senate last December by a narrow 50 to 46 vote. At the time, he promised an extensive review of the FDA’s opioid regulations to counteract complaints that the agency did little to prevent opioid misuse and was too accommodating to drug makers.

Federal efforts to reduce drug overdoses by limiting opioid prescriptions have largely failed. While opioid prescribing has fallen by 48% over the past five years, overdoses soared to a record 107,000 drug deaths in 2021, driven primarily by illicit fentanyl.

A recent study found no “direct correlation” between opioid prescribing and overdoses. Another analysis of overdose deaths in 2020 found that prescription opioids ranked well behind illicit fentanyl, alcohol, cocaine, methamphetamine and heroin as the leading cause of drug deaths.   

The ‘Parallel Pandemic’ of Long Covid

By Liz Szabo, Kaiser Health News

The latest covid-19 surge, caused by a shifting mix of quickly evolving omicron subvariants, appears to be waning, with cases and hospitalizations beginning to fall. Like past covid waves, this one will leave a lingering imprint in the form of long covid, an ill-defined catchall term for a set of symptoms that can include debilitating fatigue, difficulty breathing, chest pain, and brain fog.

Although omicron infections are proving milder overall than those caused by last summer’s delta variant, omicron has also proved capable of triggering long-term symptoms and organ damage. But whether omicron causes long covid symptoms as often — and as severe — as previous variants is a matter of heated study.

Michael Osterholm, director of the University of Minnesota’s Center for Infectious Disease Research and Policy, is among the researchers who say the far greater number of omicron infections compared with earlier variants signals the need to prepare for a significant boost in people with long covid.

The U.S. has recorded nearly 38 million covid infections so far this year, as omicron has blanketed the nation. That’s about 40% of all infections reported since the start of the pandemic, according to the Johns Hopkins University Coronavirus Research Center.

Long covid “is a parallel pandemic that most people aren’t even thinking about,” said Akiko Iwasaki, a professor of immunobiology at Yale University. “I suspect there will be millions of people who acquire long covid after omicron infection.”

Scientists have just begun to compare variants head-to-head, with varying results. While one recent study in The Lancet suggests that omicron is less likely to cause long covid, another found the same rate of neurological problems after omicron and delta infections.

Estimates of the proportion of patients affected by long covid also vary, from 4% to 5% in triple-vaccinated adults to as many as 50% among the unvaccinated, based on differences in the populations studied.

One reason for that broad range is that long covid has been defined in widely varying ways in different studies, ranging from self-reported fogginess for a few months after infection to a dangerously impaired inability to regulate pulse and blood pressure that may last years. Even at the low end of those estimates, the sheer number of omicron infections this year would swell long-covid caseloads.

“That’s exactly what we did find in the UK,” said Claire Steves, a professor of aging and health at King’s College in London and author of the Lancet study, which found patients have been 24% to 50% less likely to develop long covid during the omicron wave than during the delta wave.

“Even though the risk of long covid is lower, because so many people have caught omicron, the absolute numbers with long covid went up,” Steves said.

Reinfections Raise Risk

A recent study analyzing a patient database from the Veterans Health Administration found that reinfections dramatically increased the risk of serious health issues, even in people with mild symptoms. The study of more than 5.4 million VA patients, including more than 560,000 women, found that people reinfected with covid were twice as likely to die or have a heart attack as people infected only once. And they were far more likely to experience health problems of all kinds as of six months later, including trouble with their lungs, kidneys, and digestive system.

“We’re not saying a second infection is going to feel worse; we’re saying it adds to your risk,” said Dr. Ziyad Al-Aly, chief of research and education service at the Veterans Affairs St. Louis Health Care System.

Researchers say the study, published online but not yet peer-reviewed, should be interpreted with caution. Some noted that VA patients have unique characteristics, and tend to be older men with high rates of chronic conditions that increase the risks for long covid. They warned that the study’s findings cannot be extrapolated to the general population, which is younger and healthier overall.

“We need to validate these findings with other studies,” said Dr. Harlan Krumholz, director of the Yale New Haven Hospital Center for Outcomes Research and Evaluation. Still, he added, the VA study has some “disturbing implications.”

With an estimated 82% of Americans having been infected at least once with the coronavirus as of mid-July, most new cases now are reinfections, said Justin Lessler, a professor of epidemiology at the University of North Carolina Gillings School of Global Public Health.

‘Breathing Through a Straw’

Of course, people’s risk of reinfection depends not just on their immune system, but also on the precautions they’re taking, such as masking, getting booster shots, and avoiding crowds.

New Jersey salon owner Tee Hundley, 43, has had covid three times, twice before vaccines were widely available and again this summer, after she was fully vaccinated. She is still suffering the consequences.

After her second infection, she returned to work as a cosmetologist at her Jersey City salon but struggled with illness and shortness of breath for the next eight months, often feeling like she was “breathing through a straw.”

She was exhausted, and sometimes slow to find her words. While waxing a client’s eyebrows, “I would literally forget which eyebrow I was waxing,” Hundley said. “My brain was so slow.”

When she got a breakthrough infection in July, her symptoms were short-lived and milder: cough, runny nose, and fatigue. But the tightness in her chest remains.

“I feel like that’s something that will always be left over,” said Hundley, who warns friends with covid not to overexert. “You may not feel terrible, but inside of your body there is a war going on.”

Although each omicron subvariant has different mutations, they’re similar enough that people infected with one, such as BA.2, have relatively good protection against newer versions of omicron, such as BA.5. People sickened by earlier variants are far more vulnerable to BA.5.

Several studies have found that vaccination reduces the risk of long covid. But the measure of that protection varies by study, from as little as a 15% reduction in risk to a more than 50% decrease. A study published in July found the risk of long covid dropped with each dose people received.

For now, the only surefire way to prevent long covid is to avoid getting sick. That’s no easy task as the virus mutates and Americans have largely stopped masking in public places. Current vaccines are great at preventing severe illness but do not prevent the virus from jumping from one person to the next.

Scientists are working on next-generation vaccines — “variant-proof” shots that would work on any version of the virus, as well as nasal sprays that might actually prevent spread. If they succeed, that could dramatically curb new cases of long covid.

“We need vaccines that reduce transmission,” Al-Aly said. “We need them yesterday.”

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

Raising Lazarus: Another Take on the Opioid Crisis

By Pat Anson, PNN Editor

Beth Macy’s bestselling book “Dopesick” – and the Hulu series based on it -- helped shape the popular narrative on the origins of the opioid crisis: that Purdue Pharma and the Sackler family duped physicians into prescribing highly addictive OxyContin to millions of pain patients, setting off a public health and overdose crisis that continues to this day.

Macy’s new book “Raising Lazarus” focuses on many of the same themes, but with an important new addition. She recognizes that opioid hysteria and fear of addiction went too far, depriving many people in pain of the medications they need to lead functional and productive lives.

“In recent years, law enforcement agencies, the CDC, and other medical authorities had overreacted to the first wave of the opioid crisis by clamping down too hard on opioid-prescribing,” Macy wrote. “Some doctors responded to the revised 2016 CDC opioid-prescribing guideline – and their fear of DEA prosecution – by declaring draconian caps and essentially abandoning their patients.

“People who needed opioids were refused access. Others with decades-long chronic conditions like extreme rheumatoid arthritis were abandoned by doctors and were now left bedbound. Some who were denied the opioids they’d been taking for decades attempted suicide or resorted to illegal drugs.”  

Those are welcome words from a noted critic of opioid “overprescribing.” But that passage – which is buried halfway through a 373-page book – doesn’t represent what Raising Lazarus is all about. Macy’s new book primarily deals with Purdue’s corporate greed and the ongoing struggles of working-class people in Appalachia to overcome addiction and a healthcare system that simply doesn’t work for them.

Macy is a bit defensive and resorts to gaslighting when she acknowledges past criticism from pain patients for Dopesick “drawing too much attention to overprescribed opioid pills.” Many of their complaints are valid, she admits, “if sometimes over-the-top and oblivious to the root causes of the crisis.”

Interestingly, Macy never actually quotes one of those “over-the-top” pain patients in Raising Lazarus, but she did interview Stanford pain psychologist Dr. Beth Darnall about the reluctance of doctors to prescribe opioids.

“Doctors are so concerned about being flagged, concerned about their license and their livelihood, they don’t want to take (chronic pain patients) on, and so you end up with patient abandonment, and iatrogenic harms that can create a medically dangerous situation,” Darnall told Macy.    

‘The Cruel World of Purdue Pharma’

Greed, no doubt, is one of the primary causes of the opioid crisis and Macy describes in detail how the Sacklers manipulated the political and legal system, paying their chief counsel the handsome rate of $1,790 an hour to gum things up as best he could to preserve the family fortune and prevent them from going to prison.

But she gives a free pass to others who have profited from the opioid crisis, often at the expense of pain patients, most notably the private plaintiff law firms suing drug makers on behalf of cities, counties and states.

Macy credits the late attorney Paul Hanly as being “the first to crack open the cruel world of Purdue Pharma” without pointing out that his law firm, Simmons Hanly Conroy, boasts that it “effectively invented large-scale, multi-defendant opioid litigation” and stands to make billions of dollars in contingency fees from settlement money.  

Also unmentioned is the $400,000 in campaign donations given by Simmons Hanly Conroy to former Sen. Claire McCaskill (D-MO) in 2018, who conveniently produced a well-publicized report that year critical of drug makers and medical pain societies that the law firm was suing. Overwhelmed with legal fees defending themselves, two of those pain societies filed for bankruptcy, a loss that pain management specialists, researchers and patients could ill afford.

Macy does quote anti-opioid activists like Dr. Andrew Kolodny and Dr. Anna Lembke, but doesn’t mention that they testified as paid expert witnesses for Hanly and other plaintiff law firms, making well into six figures for their testimony, which they often failed to disclose in conflict of interest statements.  

“The opioid-litigation money is a once-in-a-generation opportunity,” Macy writes, with unintended irony.

Macy is hopeful the settlement money – once estimated at $50 billion -- will go towards addiction treatment and better healthcare for communities ravaged by the opioid crisis. Unfortunately, much of it has already been spent on legal fees, media and public relations campaigns, and political donations. That’s not counting shady industries that have grown and prospered due to the opioid crisis; from drug testing and stem cell providers to cannabis promoters and drug cartels.  

Even though fentanyl and other street drugs are responsible for the vast majority of overdoses, Macy still clings to the tired notion that opioid pain medication started it all.

“A quarter century into the crisis, many people with OUD (opioid use disorder) have long since transitioned from painkillers to heroin, methamphetamine, and fentanyl, the ultra-potent synthetic opioid. And we now have a generation of drug users that started with heroin and fentanyl,” she writes. “Death by drugs is now a national problem, but the crisis began as an epidemic of overprescribed painkillers in the distressed communities that were least likely to muster the resources to fight back.”

I look forward to Macy’s next book and hope that she hears more from the distressed community of pain patients. They need a champion to fight for them too, not more gaslighting.

'Bend or Break' Raises Awareness About Invisible Illness

By Madora Pennington, PNN Columnist

Even though he was just a kid, people called Mitch Martow lazy. Too exhausted to maintain friendships and falling asleep in school, his classmates thought he was strange. Specialists couldn’t find a medical reason for his complaints, and psychiatrists had no answers either. Even morphine didn’t ease the pain that tortured him in his early teens.

One day, worn out from physical suffering that was compounded by so many doctors saying his pain was a mental issue, Mitch attempted suicide. He cried when he awoke in the ICU because he had not succeeded.

This is the story told in the documentary “Bend or Break.” Based mainly on Mitch’s blog posts, the film features interviews with Mitch and his family about how his mysterious illness turned their lives upside down and how a correct diagnosis changed all of that.

Mitch has Ehlers-Danlos Syndrome (EDS), a term for a number of similar, poorly understood disorders where the body fails to make stable collagen. As a result, the person has extreme flexibility, to the extent that their joints can bend backward.

With no obvious outward signs, many of us with EDS go decades without a diagnosis, despite frequently seeking care for its debilitating and perplexing symptoms.

MITCH MARTOW

When he was finally diagnosed correctly, Mitch’s family was troubled because EDS is under-researched and lacks effective treatments. For Mitch, his diagnosis made him happy: he was not crazy and could find others like him, which meant everything. It was the end of isolation.

To tell the story, Bend or Break showcases a young contortionist and dancer, Toria Summerville. Toria also has Ehlers-Danlos Syndrome, so she is capable of astounding feats of flexibility. Interspersed with the interview segments are Toria’s beautifully choreographed dances that express the emotionality of the Martow family’s experience.

‘I Felt Very Alone’

Toria was 19 when she participated in the documentary, but her performance has the maturity and depth of someone much older. From childhood, she always knew she was different but didn’t know why. With no understanding of what was wrong, it was up to her to get by and cope with unacknowledged and unaddressed symptoms.

When she was 5 or 6 years old, Toria would be awake all night, crying in pain. Doctors said it was growing pains. When she was in the 6th grade, she was put on medication for anxiety and depression. Doctors assumed she had an eating disorder, but she was allergic to many foods, a common problem with EDS.

“I felt very alone growing up and very confused with myself. I knew something was going on, but I didn’t know what,” Talia says.

She struggled with brain fog and fatigue. Her differences attracted comments from other kids, which felt like bullying. In dance class, others would laugh at her inability to control her superhuman flexibility.

Toria was often getting injured with dislocating joints and easy bruising. Concerned guidance counselors would ask if anyone was abusing her. Well-meaning adults put her in a peer support group, but she could not relate to the other kids. There, therapists offered helpful tools, but they were not what Toria needed, so it felt even more isolating.

At a performing arts high school, Toria found understanding. Her circus coach instinctively understood her and took her under his wing. “We worked on abilities that my body could do,” she says.

For Bend or Break, Toria dedicated herself to understanding and demonstrating what the Martow family experienced, a process that was emotionally challenging, not only because of what Mitch went through but because much of it hit close to home. She walked a fine line.

“I had to be sensitive that it was Mitch’s story, not mine. I had to be in tune with all the milestones he was going through and portray that with my movements and facial expressions,” she explained.

In one sequence, she dances in a straitjacket, an idea she came up with from the feeling of being trapped by so many misdiagnoses herself.

Bend or Break concludes with interviews of others with EDS. Like Mitch, they look perfectly healthy. No one would guess how debilitating their EDS problems are. The documentary drives home the difficulty of having an invisible illness — one not indicated by obvious signs of impairment. People with invisible illnesses and disabilities have a hard time getting believed.

Toria hopes Bend or Break will spread awareness about EDS to the general population and medical professionals in every field. Had she been diagnosed correctly at an earlier age, Toria could have avoided many injuries and gotten better help in school.

“We need to cut back the time to get a diagnosis. My life would have been a lot easier if I had known about EDS sooner,” she says.

Mitch has seen firsthand the positive effects Bend or Break is having. Medical doctors have thanked him for the film because it helped them understand patients with EDS or other invisible illnesses. He’s also spoken to psychology students who have watched the film and is hopeful that when they start working as mental health professionals, they’ll be cautious about insisting that a patient’s chronic pain is psychosomatic.

The film encourages healthcare providers to be careful with diagnoses like "conversion disorder," where a symptom is assumed to be mental because no physical cause can be found. Being treated that way nearly destroyed Mitch’s life. “I tried to use suicide to escape from it,” he says.

Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. She graduated from UC Berkeley with minors in Journalism and Disability Studies. 

Ketamine and Oxytocin Provide Pain Relief for Arachnoiditis

By Dr. Forest Tennant, PNN Columnist

Nearly every day we receive an email from someone who is having trouble getting enough pain medication to give them a good quality of life.  In this age of opioid restrictions, there is hope. 

In the past, opioids and gamma amino butyric acid (GABA) substitutes such as diazepam (Valium) and gabapentin (Neurontin) have been the mainstays for pain control of adhesive arachnoiditis (AA). Today, there are alternatives that can enhance your current program to give you better pain control.

Low dose naltrexone is the initial pain reliever recommended to newly diagnosed AA cases. There are two other potent pain relievers that can be used with both naltrexone and opioids to achieve better pain relief: ketamine and oxytocin. Either agent is a good opioid substitute.

Ketamine provides pain relief primarily by suppressing a nerve receptor called N-methyl-d-aspartate. It can be taken by several non-oral routes of administration: nasal, injectable, sublingual or troche (dissolvable tablet).

Oxytocin (not to be confused with oxycodone or OxyContin) is a hormone that is a natural pain reliever. It surges in a woman’s body at the time of delivery to provide pain relief. It acts by activating the endorphin (opioid) receptors and by blocking nerve impulses between the brain and spinal cord.

Every community now has one or more pharmacies that will compound or “make” formulations of ketamine or oxytocin. We favor under-the-tongue (sublingual) or buccal (cheek) formulations.

Ketamine and/or oxytocin can be taken between opioid dosages or within 5 to 10 minutes before or after an opioid dosage to make the opioid stronger and last longer.

Ketamine and oxytocin can be used separately or used as combination therapy. Starting dosages of ketamine are 10-15 mg and oxytocin 10-20 units, which are administered within 10 minutes of each other. Dosages can later be raised above the starting dose.

We find the combination of ketamine and oxytocin to provide equal or better pain relief that most prescription opioids. Neither ketamine nor oxytocin are opioids, so there is no bias or resistance to their use. Also, overdoses are essentially not known to occur with regular dosages.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. This column is adapted from a bulletin recently issued by the Arachnoiditis Research and Education Project. Readers interested in subscribing to the bulletins should click here.

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