What Do You Think About Changes to CDC Opioid Guideline?

By Pat Anson, PNN Editor

Do you think the proposed changes to the CDC’s opioid guideline are an improvement over the original 2016 guideline? Will the changes make doctors more or less willing to prescribe opioids? Should the guideline be expanded to include recommendations for treating conditions like migraine and low back pain?

Those are some of the questions we’re asking in a new PNN survey on the long-awaited draft revision of the guideline that was unveiled last month by the CDC.  In addition to giving healthcare providers more flexibility in using opioid medication to manage chronic pain, some experts say the changes effectively transform the guideline into a national “standard of care” for pain management – one that would apply to most doctors and patients, regardless of the severity or duration of their pain.

While the guideline changes have been applauded by professional societies like the American Medical Association for removing “arbitrary doses thresholds” for opioids, some worry that the expansion goes too far and could harm patients -- like the original guideline did -- by depriving them of effective pain treatments.

“The CDC is outside its lane to be recommending how physicians should practice pain medicine. Would they recommend how to treat hypertension or diabetes? If they did, it too would be inappropriate, unless it was in collaboration with one or more of the medical professional societies devoted to those areas,” says Lynn Webster, MD, Senior Fellow at the Center for U.S. Policy and past president of the American Academy of Pain Medicine.

“I have a lot of concerns about the new version. It is better, but still terribly misleading and not grounded in science, which is terrible disappointing.” 

90 MME Threshold Dropped

Perhaps the biggest change to the 2016 guideline is the CDC’s decision to drop a recommendation that opioid doses not exceed 90 morphine milligram equivalents (MME) per day, which quickly became a hard limit for many providers, insurers, states and regulators.

While the CDC still recommends caution about doses exceeding 50 MME, that advice is not enough for Lewis Nelson, MD, a longtime critic of opioid prescribing who advised the agency when the original guideline was created. He thinks the 90 MME limit is based on sound evidence.

“There are good data to support that there is an inflection point at 90 MME. It’s clear that high-dose chronic opioid therapy is associated with a number of adverse consequences -- including addiction, unintentional overdose and potentially death,” says Nelson, the Chair of Emergency Medicine at Rutgers New Jersey Medical School. “In a way, it’s a race to the bottom in pain management, because if you’re not getting better with a reasonable dose of an opioid, there’s nothing to support that additional opioid is going to carry significant benefit and is known to markedly increase the risk.”

Dr. Webster says the use of MME to guide prescribing is misleading because not all opioids are the same or convert well to MME doses. Like others, he worries that 50 MME will become the new hard threshold for opioid doses.

“I think any reference to conversion tables and MME will be interpreted as validation of them. We saw that with the 2016 guideline,” Webster told PNN. “The CDC needs to explicitly state the lack of scientific basis for both and that their use could be dangerous in some cases. They should not cite 50 MME threshold anywhere, as it is meaningless, misleading and will lead to further misapplication of the recommendation. You would think that they would have learned that by the 2016 guideline.” 

Take Our Survey

This is the fifth survey PNN has conducted on the CDC guideline. All of them found that the vast majority of patients and providers believe the guideline was harmful, worsened the quality of pain care, and led some patients to contemplate suicide or turn to street drugs.    

For those who think surveys are a waste of time and the CDC doesn’t pay attention to them -- think again. On Page 53 of its revised opioid guideline, the agency cites PNN’s 2017 survey and has a footnote linking to it:

"An online (non-peer reviewed) survey of over 3000 patients 1 year after the release of the 2016 CDC Guideline found that 84% reported more pain and worse quality of life and 42% said they had considered suicide; however, the survey did not attempt to sample patients with chronic pain using a rigorous methodological approach.”  

It’s true the PNN survey was not peer-reviewed and that patients were not sampled with a “rigorous methodological approach.”  It’s also true that CDC has not conducted a large survey of its own to measure the impact of its guideline on patients. The agency has focused on counting opioid prescriptions — not patient outcomes — as a measure of whether its guideline is working.

To take our new survey, click here.

It should only take a few minutes to complete. We’ll share the results in mid-April.

'This is an opportunity for patients, caregivers, clinicians and others to share their impressions of the 2022 revised and expanded CDC practice guidelines for treatment of acute and chronic pain,” says patient advocate Richard “Red” Lawhern, PhD.

“This guideline will ultimately steer pain care for the foreseeable future, for better or worse. The more involved and informed every part of our community is, the more we can help shape its impact. This survey is one more way to get involved and help guide future efforts,” said Tamera Lynn Stewart, Policy Director for P3 Political Action Alliance.

You can read the revised draft of the CDC guideline and leave an online comment in the Federal Register by clicking here. Comments must be received by April 11.

Supreme Court Hears Arguments in Key Opioid Prescribing Case

By Pat Anson, PNN Editor

The U.S. Supreme Court heard oral arguments today in the case of two doctors appealing their convictions for criminal violations of the Controlled Substances Act (CSA) -- a case that could have a significant impact on opioid prescribing nationwide.

Dr. Xiulu Ruan and Dr. Shakeel Kahn were sentenced to lengthy prison terms for prescribing high doses of opioid medication to patients, including one who died from an overdose. Their combined appeals focus on whether jurors were properly instructed that doctors are allowed to prescribe opioids outside the usual standard of medical care, as long as they act in good faith and with a medical purpose.

“It is important for me to be clear that my client didn’t get that instruction,” said attorney Saul Robbins, who represents Ruan. “His jury was told if he was outside the bounds of medicine, you may convict him. Full stop. No good faith, no ‘knowingly or intentionally,’ none of that.”

Kahn’s lawyer told the high court that a strict interpretation of the CSA was having a chilling effect on many doctors, who worry about their “medical morals” being policed by the Drug Enforcement Administration.

“I think that raises the real risk the DEA becomes the de facto national medical board. That’s never been authorized,” said attorney Beau Brindley.

Much of the 90-minute hearing focused on legal semantics and whether the CSA gives doctors the discretion to prescribe medications as they see fit. Some of the court’s most conservative justices asked the toughest questions of a Department of Justice attorney who argued against the doctors’ appeals.

“Many things disturb me about some of the arguments. One is the ungrammatical reading of the statute itself,” said Justice Neal Gorsuch, who openly speculated that Ruan and Kahn could not only be entitled to new trials, but the indictments against them could be dismissed.  

Justice Brett Kavanaugh said the CSA was too vague.

“The problem here, the core as I see it, is the statute says ‘except as authorized’ and the regs (regulations) say ‘legitimate medical purpose.’ That’s very vague language in my estimation,” said Kavanaugh. “Write more specific regs if you have the problem that you’re talking about. But ‘legitimate medical purpose’ is a very vague thing on which reasonable people can disagree.

“There are going to be close calls on what the evidence shows objectively was legitimate. And so, if you’re on the wrong side of the close call as the doctor, you go to prison for 20 years.”

“I don’t think that’s going to be the case for doctors who make innocent mistakes,” replied Eric Feigin, a U.S. deputy solicitor general. “We do not think a doctor can be convicted for something that other doctors would recognize as within the boundaries of medicine.”

It could take several months for the Supreme Court to make a ruling on the case. The high court will not determine whether the doctors are guilty or innocent, but will decide if they were lawfully prosecuted and if new trials are needed. Complicating the appeals of both doctors is that they were also convicted of crimes outside of the CSA.

Ruan, who practiced in Alabama, often gave patients Subsys, an expensive and potent fentanyl spray made by Insys Therapeutics that was only approved by the FDA for breakthrough cancer pain. Ruan prescribed Subsys “off label” to patients who didn’t have cancer, a practice that led to several other doctors being targeted by the DEA. Ruan was also convicted of taking kickbacks from Insys. He was sentenced to 21 years in prison.    

Kahn, who practiced in Wyoming and Arizona, was convicted of prescribing excessive amounts of oxycodone and running a criminal enterprise that resulted in the death of a patient. He is serving a sentence of 25 years.

Fizzy Pain Relievers Are Bad for the Heart

By Pat Anson PNN Editor

Long-term use of the pain reliever acetaminophen has long been associated with liver, kidney, heart and blood pressure problems.  A new study has also found that some acetaminophen tablets are so loaded with salt that they significantly raise the risk of a heart attack or stroke in as little as one year.

At issue are dissolvable acetaminophen tablets that are mostly used to treat cold and flu symptoms, as well as minor aches and pains. The tablets quickly dissolve in water because of their high salt (sodium) content, creating a fizzy, effervescent drink that is absorbed more quickly in the digestive system than a standard tablet.

Some of the fizzy tablets contain as much as 440 milligrams of sodium per pill. A recommended daily dose of two tablets taken four times a day adds up to over 3,500 milligrams – more sodium than three McDonald’s Big Macs – and nearly double the daily amount recommended for healthy adults.

Since high salt content has long been associated with cardiovascular problems, a team of researchers looked at the health records of 300,000 people enrolled in Britain’s National Health Service who were prescribed acetaminophen (paracetamol) to see what impact the medications may have.

Their findings, recently published in the European Heart Journal, showed that patients with a history of high blood pressure (hypertension) taking fizzy acetaminophen tablets were up to 45% more likely to suffer a heart attack, stroke or heart failure within a year. Just one prescription for the tablets increased their risk of dying by 177 percent, and those with five or more prescriptions were 264% more likely to die.

The risk of a heart attack, stroke or death for patients without high blood pressure also rose with a prescription for fizzy acetaminophen, but to a lesser degree.

“The direct message from this study is clear—there are likely to be millions of people worldwide taking paracetamol on a daily basis in a ‘fast-acting’ effervescent or soluble formulation who are increasing their risks of cardiovascular disease and premature death,” wrote Aletta Schutte, PhD, and Bruce Neal, PhD, in an accompanying editorial.

“Fortunately, only a small proportion of paracetamol formulations contain sodium but, with ‘fast-acting’ and ‘fizzy’ medications increasing in popularity, the adverse effects of medication-related sodium intake look set to rise rather than fall.”

The risk isn’t limited to fizzy tablets with acetaminophen. Other effervescent medications containing aspirin, ibuprofen and even vitamins also contain high levels of sodium.  

With or without salt, long-term acetaminophen use can be risky. A recent study at the University of Edinburgh found that acetaminophen significantly raised the risk of heart disease and stroke in people with high blood pressure. Researchers said the increased risk of cardiovascular problems was similar to that seen with non-steroidal anti-inflammatory drugs (NSAIDs).

Acetaminophen is the most widely used over-the-counter pain reliever in the world — and is the active ingredient in Tylenol, Excedrin, and hundreds of pain medications. But a 2021 review found little or no evidence to support the use acetaminophen for most pain conditions.

Closed Pain Clinics Were ‘Always Pushing Injections’

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

On May 13 of last year, the cellphones of thousands of California residents undergoing treatment for chronic pain lit up with a terse text message: “Due to unforeseen circumstances, Lags Medical Centers will be closing effective May 19, 2021.”

In a matter of days, Lags Medical, a sprawling network of privately owned pain clinics serving more than 20,000 patients throughout the state’s Central Valley and Central Coast, would shut its doors. Its patients, most of them working-class people reliant on government-funded insurance, were left without ready access to their medical records or handoffs to other physicians.

Many patients were dependent on opioids to manage the pain caused by a debilitating disease or injury, according to alerts about the closures that state health officials emailed to area physicians. They were sent off with one final 30-day prescription, and no clear path for how to handle the agony — whether from their underlying conditions or the physical dependency that accompanies long-term use of painkillers — once that prescription ran out.

The closures came on the same day that the California Department of Health Care Services suspended state Medi-Cal reimbursements to 17 of Lags Medical’s 28 locations, citing without detail “potential harm to patients” and an ongoing investigation by the state Department of Justice into “credible allegations of fraud.”

In the months since, the state has declined to elaborate on the concerns that prompted its investigation. Patients are still in the dark about what happened with their care and to their bodies.

photo by Kathleen Hayden (KHN)

Even as the government remains largely silent about its investigation, interviews with former Lags Medical patients and employees, as well as KHN analyses of reams of Medicare and Medi-Cal billing data and other court and government documents, suggest the clinics operated based on a markedly high-volume and unorthodox approach to pain management. This includes regularly performing skin biopsies that industry experts describe as out of the norm for pain specialists, as well as notably high rates of other sometimes painful procedures, including nerve ablations and high-end urine tests that screen for an extensive list of drugs.

Those procedures generated millions of dollars in insurer payments in recent years for Lags Medical Centers, an affiliated network of clinics under the ownership of Dr. Francis P. Lagattuta. The clinics’ patients primarily were insured by Medicare, the federally funded program for seniors and people with disabilities, or Medi-Cal, California’s Medicaid program for low-income residents.

Taken individually, the fees for each procedure are not eye-popping. But when performed at high volume, they add up to millions of dollars.

Take, for example, the punch biopsy, a medical procedure in which a circular blade is used to extract a sample of deep skin tissue the size of a pencil eraser. The technique is commonly used in dermatology to diagnose skin cancer but has limited use in pain management medicine, usually involving a referral to a neurologist, according to multiple experts interviewed. These experts said it would be unusual to use the procedure as part of routine pain management.

KHN used Medi-Cal records to assess the volume of services performed across the entire chain. But the state could not provide totals for how much Lags Medical was reimbursed because of California’s extensive use of managed-care plans, which do not make their reimbursement rates public. Where possible, KHN estimated the worth of Medi-Cal procedures based on the set rates Medi-Cal pays traditional fee-for-service plans, which are public.

Lags Medical clinics performed more than 22,000 punch biopsies on Medi-Cal patients from 2016 through 2019, according to state data. Medi-Cal reimbursement rates for punch biopsies changed over time. In 2019 the state’s reimbursement rate was more than $200 for a set of three biopsies performed on patients in fee-for-service plans.

Laboratory analysis of punch biopsies was worth far more. Lags Medical clinics sent biopsies to a Lags-affiliated lab co-located at a clinic in Santa Maria, according to medical records and employee interviews. From 2016 through 2019, Lags Medical clinics and providers performed tens of thousands of pathology services associated with the preparation and examination of tissue samples from Medi-Cal patients, according to state records. The services would have been worth an estimated $3.9 million using Medi-Cal’s average fee-for-service rates during that period.

In that same period, Medicare reimbursed Lagattuta at least $5.7 million for pathology activities using those same billing codes, federal data shows.

‘Assembly Line’ Pain Care

Much of the work at Lags Medical was performed by a relatively small number of nurse practitioners and physician assistants, each juggling dozens of patients a day with sporadic, often remote supervision by the medical doctors affiliated with the clinics, according to interviews with former employees. Lagattuta himself lived in Florida for more than a year while serving as medical director, according to testimony he provided as part of an ongoing malpractice lawsuit that names Lagattuta, Lags Medical, and a former employee as defendants.

Former employees said they were given bonuses if they treated more than 32 patients in a day, a strategy Lagattuta confirmed in his deposition in the malpractice lawsuit. “If they saw over, like, 32 patients, they would get, like, $10 a patient,” Lagattuta testified.

The lawsuit, filed in Fresno County Superior Court, accuses a Lags Medical provider in Fresno of puncturing a patient’s lung during a botched injection for back pain. Lagattuta and the other named defendants have denied the incident was due to negligent treatment, saying, in part, the patient consented to the procedure knowing it carried risks.

Hector Sanchez, the nurse practitioner who performed the injection and is named in the lawsuit, testified in his own deposition that providers at the Lags Medical clinic in Fresno each treated from 30 to 40 patients on a typical workday.

According to Sanchez’s testimony and interviews with two additional former employees, Lags Medical clinics also offered financial bonuses to encourage providers to perform certain medical procedures, including punch biopsies and various injections. “We were incentivized initially to do these things with cash bonuses,” said one former employee, who asked not to be named for fear of retribution. “There was a lot of pressure to get those done, to talk patients into getting these done.”

In his own deposition in the Fresno case, Lagattuta denied paying bonuses for specific medical procedures.

‘Injections, Injections, Injections’

Interviews with 17 former patients revealed common observations at Lags Medical clinics, such as crowded waiting rooms and an assembly-line environment. Many reported feeling pressure to consent to injections and other procedures or risk having their opioid supplies cut off.

Audrey Audelo Ramirez said she had worried for years that the care she was receiving at a Lags Medical clinic in Fresno was subpar. In the past couple of years, she said, there were sometimes so many patients waiting that the line wrapped around the building.

Ramirez, 52, suffers from trigeminal neuralgia, a rare nerve disease that sends shocks of pain across the face so severe it’s known as the “suicide disease.” Over the years, Lags Medical had taken over prescribing almost all her medications. This included not only the opioids and gabapentin she relies on to endure excruciating pain, but also drugs to treat depression, anxiety, and sleep issues.

Ramirez said she often felt pressured to get procedures she didn’t want. “They were always just pushing injections, injections, injections,” she said. She said staffers performed painful punch biopsies on her that resulted in an additional diagnosis of small fiber neuropathy, a nerve disorder that can cause stabbing pain.

She was among numerous patients who said they felt they needed to undergo the recommended procedures if they wanted continued prescriptions for their pain medications. “If you refuse any treatment they say they’re going to give you, you’re considered noncompliant and they stop your medication,” Ramirez said.

She said she eventually agreed to an injection in her face, which she said was administered without adequate sedation. “It was horrible, horrible,” she said. Still, she said, she kept going to the office because there weren’t many other options in her town.

Lagattuta, through his lawyer, declined a request from KHN to respond to questions about the care provided at his clinics, citing the state investigation. “Since there is an active investigation, Dr. Lagattuta cannot comment on it until it is completed,” attorney Matthew Brinegar wrote in an email. Lagattuta’s license remains in good standing, and he said in his deposition in the Fresno lawsuit that he is still seeing patients in California.

Experts interviewed by KHN noted that medical procedures such as injections can have a legitimate role in comprehensive pain management. But they also spoke in general terms about the emergence of a troubling pattern at U.S. pain clinics involving the overuse of procedures. In the 1990s and early 2000s, problematic pain clinics hooked patients on opioids, then demanded cash to continue prescriptions, said Dr. Theodore Parran, who is a professor of medicine at Case Western Reserve University and has served as an expert witness in federal investigations into pain clinics.

“What has replaced them are troubled pain clinics that hook patients with the meds and accept insurance, but overuse procedures which really pay well,” he said. For patients, he added, the consequences are not benign.

“I mean they are painful,” he said. “You’re putting needles into people.”

Cash Bonuses for Procedures

Before moving to California in 1998, Dr. Francis Lagattuta lived in Illinois and worked as a team doctor for the Chicago Bulls during its 1995-96 championship season. Out West, he opened a clinic in Santa Maria, a Latino-majority city along California’s Central Coast known for its strawberry fields, vineyards, and barbecue. From 2015 to 2020, the chain grew from a couple of clinics in Santa Barbara County to dozens throughout California, largely in rural areas, as well as far-flung locations in Washington state, Delaware, and Florida.

The California portion of the chain is organized as more than two dozen corporations and limited liability corporations owned by Lagattuta. His son, Francis P. Lagattuta II, was a manager for the company.

On the Lags Medical website and in conversation with employees, the elder Lagattuta claimed he was on the vanguard of diagnosing and treating small fiber neuropathy. Much of the website has now been taken down. But pages available via an archival site claim he had pioneered a three-pronged approach to pain management that made minimal use of opioids and surgeries, instead emphasizing testing, injections, mental health, diet, and exercise.

“In keeping with his social justice values, Dr. Lagattuta plans to share these findings to the rest of the world, hopefully to help solve the opioid crisis, and end suffering for millions of people struggling with pain,” touted a biography once highlighted on the website.

Dr. Francis Lagattuta (Twitter)

Numerous Lags Medical patients interviewed by KHN said that even when they were given punch biopsies and a subsequent diagnosis of neuropathy, their treatment plan continued to involve high doses of opioid medications.

Dr. Victor C. Wang, chief of the division of pain neurology at Brigham and Women’s Hospital in Boston, said punch biopsies are occasionally used in research but are not a standard part of pain medicine. Instead, small fiber neuropathy is usually diagnosed with a simple clinical exam.

“The treatment is going to be the same whether you have a biopsy or not,” said Wang. “I always tell the fellows, you can do this test or that one, but is it really going to change the management of the patient?”

Ruby Avila, a mother of three in Visalia, remembers having the punch biopsies done at least three times during her four years as a Lags Medical patient. “I have scars down my leg,” she said. Each time, she said, providers removed a set of three skin specimens that were used to diagnose her with small fiber neuropathy.

Avila, 37, who has lived with pain since childhood, had found it validating to finally have a diagnosis. But after learning more about how common the biopsies were at Lags Medical, she was shaken. “It’s overwhelming to hear that they were doing it on a lot of people,” she said.

Sanchez, the nurse practitioner named in the Fresno lawsuit, spoke of other procedures that garnered bonuses: “Trigger point injections, knee injections, hip injections, foot injections for plantar fasciitis and elbow injections” all qualified for $10 bonuses, he said in his testimony.

Two former employees, who asked not to be named, echoed Sanchez, saying they were incentivized to do certain procedures, including injections and punch biopsies.

In his testimony in the Fresno case, Lagattuta denied paying bonuses for procedures. “It was only for the patients,” he said. “We never did it based on procedures.”

Incentive systems for a specific procedure are “completely unethical,” said Dr. Michael Barnett, an assistant professor of health policy at Harvard. “It’s like giving police officers a quota for speeding tickets. What do you think they’re going to do? I can’t think of any justification.”

Dr. Carl Johnson, 77, is a pathologist who directed Lags Medical’s Santa Maria lab from 2018 to 2021. Johnson said the only specimens he looked at came from punch biopsies, the first time in his long career as a pathologist that he had been asked to run such an analysis. On an average day, he said, he examined the slides of about 40 patients, searching for signs of small fiber neuropathy. Lagattuta gave him papers to read on peripheral neuropathy and assured him they were on the cutting edge of care for pain patients.

Johnson said he “never thought there was anything untoward going on” until he arrived on his last day and was told to pack up his belongings because the entire operation was shutting down.

Nerve Ablations and Drug Tests

Lags Medical performed other procedures at rates that also set them apart. From 2015 through 2020 — the span for which KHN had state data — Lags Medical performed more than 24,000 nerve ablations, a procedure in which part of a nerve is destroyed to reduce pain, on Medi-Cal patients. That’s more than 1 in 6 of all nerve ablations billed through Medi-Cal during that period.

An analysis of federal data also shows Lagattuta was an outlier. For example, in 2018 he billed Medicare for nerve ablations more often than 88% of the doctors in his field who performed the procedure.

Lags Medical also used the in-house lab to run drug tests on patients’ urine samples. From 2017 through 2019, Lags Medical facilities often ordered the most extensive — and expensive — set of drug tests, which check for the presence of at least 22 drugs, according to state and federal data.

For perspective, in 2019, more than 23,000 of the most extensive drug tests were ordered on Medi-Cal patients under Lagattuta’s provider number, more than double the number tied to the next highest biller. The next five top billers were all lab companies.

Overall, from 2017 through 2019, nearly 60,000 of the most extensive drug tests were billed to Medicare and Medi-Cal under Lagattuta’s provider number. Medicare reimbursed Lagattuta $5.4 million for these tests during that period. Using state fee-for-service rates, the testing billed to Medi-Cal would have been worth an estimated $6.3 million. That doesn’t include less extensive drug screens or those billed under other providers’ numbers.

Pain management experts described the use of extensive screening as unnecessary in routine pain treatment; the overuse of such tests has been the subject of numerous Medicare investigations in recent years.

Private pain clinics like Lags Medical are only loosely regulated and generally are not required to hold a special license from the state. But the physicians who work there are regulated by the Medical Board of California.

In December 2019, a patient who’d visited clinics in both Visalia and the Central Coast filed a complaint against Lagattuta with the medical board claiming, among other things, that she received biopsies that were not properly performed, that she underwent excessive testing, and that positive drug tests had been falsified. The medical board had another pain management doctor review more than 300 pages of documents and found “no deviations from the standard of care” and “did not find any over testing, or improperly performed biopsies.”

He did, however, find some record-keeping problems, including numerous procedures in which patient consent was not documented. He also found instances in which procedures were performed and repeated without documentation that they were effective. The patient who filed the complaint was given a medial branch nerve block in November 2014, followed by a radiofrequency ablation in December, and another in February. No improvements for the patient were ever noted in the charts, the investigating doctor found.

The medical board chalked it up to a record-keeping error and fined Lagattuta $350.

Opioids Needed for ‘Halfway-Normal Life’

On a warm evening in late July, Leah Munoz drove her power wheelchair around the long plastic tables at the Veterans Memorial Building in Hanford, a dusty farm town in California’s Central Valley. Senior bingo night was crowded with gray-haired players waiting for the game to begin. She found an empty spot and carefully set out $50 worth of bingo cards, alongside her collection of 14 brightly colored daubers.

Munoz, 55 and a mother of six, said she has suffered from a litany of illnesses — thyroid cancer, breast cancer, lupus, osteoarthritis — that leave her in near-constant pain. She’s been playing bingo since she was a little girl, and said it helps distract from the pain and calm her mind. She looks forward to this event all week.

Munoz was a Lags Medical patient for about four years and, while her pain never disappeared, the opioids prescribed provided enough relief for her to continue doing the things she loved. “There’s a difference between addiction and dependence. I need it to live a halfway-normal life,” Munoz said.

leah and ramon munoz

After Lags Medical closed in May, her primary care doctor initially refused to refill her opioid prescriptions. She said she called the Lags Medical offices to try to get a copy of her medical records to prove her need, and even showed up in person. But she said she was unable to get them. As the pills dwindled and the pain surged, Munoz said, it became hard to leave her home. “I missed a lot of bingo, a lot of grocery shopping, a lot of going to my grandkids’ birthday parties. You miss out on life,” she said. Ultimately, she said, her primary care doctor referred her to another pain clinic, and she was able to resume her prescription.

Even with pain medications, Munoz said, she never received true relief during her time as a patient at Lags Medical. She said she felt coerced to get several injections, none of which seemed to help. “If I didn’t get the procedures, I didn’t get the pain medication,” she said. Her husband, Ramon, a landscaper who was also a patient, received an injection there that he said left him with permanent stiffness in his neck.

Munoz knows at least five other people at bingo night who were former patients at Lags Medical. One of them, Rick Freeman, came over to her table to chat. He swayed back and forth as he walked, his knees, he explained, swollen after 35 years living with HIV. At Lags Medical, Freeman said, he felt pressured by staff to receive injections if he wanted to continue receiving his opioid prescriptions. “If you don’t cooperate with them, they would reduce your meds down,” he said.

At the front of the room, Gail Soto, who ran the event, sold bingo cards to the latecomers. Soto, 72, said she injured her back while working an administrative job at a construction company years ago and suffers from spinal stenosis, rheumatoid arthritis, and fibromyalgia. She, too, was a patient at Lags Medical for years. In addition to her opioid prescription, Soto said, she received repeated injections and three nerve ablations. At first, the ablations helped, but what staff members didn’t tell her, she said, was that the nerves they destroyed could grow back. Ultimately, she said, the procedures left her in worse pain.

Soto’s biggest concern is the spinal stimulator that she said Lags Medical surgically inserted into her back five years ago. She said the doctors told her the device would work so well that she would no longer need her pain pills. She said they didn’t explain that the device would work only two hours a day, and on one side of her body. She remained in too much pain to give up her meds, she said, and, five years later, the battery is failing.

Soto sleeps in a recliner chair in her three-bedroom mobile home in Lemoore, another small city near Hanford. It’s well kept but humble, and she and her husband keep a collection of wind chimes on the front porch that create a wave of gentle music when a breeze passes by.

The couple take good care of each other and their two beloved Chihuahuas, but life has become increasingly difficult for Soto. As the battery on her spinal stimulator has started to fail, she said, she has sudden electrical pulses that shoot up her body.

GAIL SOTO

“My husband says sometimes when I sleep that my body will just jump up in the air,” she said. But now that Lags Medical is closed, she said, she can’t find a doctor willing to remove the device. “Most doctors are telling me right now, ‘We can’t, because we didn’t [put it in]. We don’t want nothing to do with that.’”

Waitlists and Withdrawal

Audrey Audelo Ramirez said she picked up her final refill from Lags Medical on June 4 and by July 4 had no meds left to treat her pain. Ramirez said she called every pain management clinic in Fresno, but none were taking new patients.

“They left us all high and dry,” she said. “Everybody.”

In the weeks that followed the closures, county officials throughout the Central Valley saw a flood of patients on high doses of opioids in search of new providers, they said. Patients couldn’t access their medical records, so other providers had no idea what their treatments had been.

“We had to create a crisis response to it because there was no organized response at that time,” said Dr. Rais Vohra, the interim health officer for Fresno County.

Fresno County’s health system is already lean, Vohra said. Toss in this abrupt closure and you end up in the kind of crisis rarely seen in other fields of medicine: “You’d never do this with a cancer clinic,” he said. “You’d never abruptly stop chemo.”

The state asked Dr. Phillip Coffin, director of substance abuse research for the San Francisco Department of Public Health, to run provider training and persuade doctors to take on new patients. Many practices have rules against taking new patients on opioids, or will refuse to prescribe doses above certain thresholds.

“We know that when you stop prescribing opioids, some people end up with death from suicide, overdose, increased illicit opioid use, pain exacerbations. It’s really important to have a continuity, and that is not really possible in the current opioid-prescribing culture,” Coffin said. The threat to patients is so severe that the FDA issued a warning in 2019 against cutting patients off from prescription opioids.

Gina, a retired nurse who asked to be identified by only her first name for fear she’d be discriminated against by other doctors, had been a Lags Medical patient for six years. She said she called every practice she could find in her Central Coast town, and was put on a waiting list at one. Suffering from a severe case of scoliosis, she started rationing the pain pills she had come to rely on.

When she finally secured an appointment, she said, she was told by the doctor she was on “some very strong meds” and he would fill only one of her two prescriptions. “You’re like a criminal,” she said. “You’re branded as ‘we don’t trust you.’”

She started experiencing withdrawal symptoms — sweating, lost appetite, sleeplessness, anxiety. Worst of all, her pain “came back with a vengeance,” she said.

“I think about this, what I’d have been like if I’d never gone through pain management. I sometimes wonder if I’d be better off.”

As for Ramirez, her primary care doctor finally secured an appointment for her at another pain clinic, she said. It was in the same space as the old Lags Medical clinic, and she said she recognized many of the staff members. But now there was a new name: Central California Pain Management. From her perspective, it was as if nothing had changed. And she still doesn’t know whether she needs to worry about the care she received during more than four years at Lags Medical.

This story was produced by Kaiser Health News. Senior correspondent Jordan Rau and Phillip Reese, an assistant professor of journalism at California State University-Sacramento, contributed to this report.

Revised CDC Opioid Guideline a ‘Band Aid for a Stab Wound’

By Emily Ullrich, Guest Columnist

After years of state sanctioned torture, people in pain have finally received a small reprieve from the Centers for Disease Control and Prevention, in the form of a revised draft of the agency’s opioid prescribing guideline.

In the new draft, the CDC acknowledges some of the harm inflicted by its 2016 guideline, by adding language that gives doctors more flexibility in prescribing opioids and encourages them to practice “individualized patient centered care.”

While this perspective is a welcome departure from the original guideline, we need to go further. As a disabled chronically ill patient, I have personally experienced the stigma and misinformation that comes with being prescribed opioids. As a patient advocate, I’ve also watched in horror as an untold number of suffering patients deprived of opioids committed suicide.

There are four main issues that still need to be addressed by the CDC. The first is that many patients on long-term opioid therapy have rare diseases such as Complex Regional Pain Syndrome (CRPS) and Ehlers-Danlos syndrome. Because these and other incurable illnesses aren’t even mentioned in the guideline, it is assumed that most pain patients have treatable conditions such as low back pain or acute injuries that will improve with time. This is not the case. There is a large segment of the patient population that cannot be cured. For them, symptom management with opioid medication is their only option.

Second, it’s important to emphasize that all patients are different. Individual factors like genetics, metabolism, tolerance and more can determine how opioids affect a patient.  A dose that may be “a lot” for one patient might be very ineffective and too low a dose for others.

Third, because of the harms that have been imposed upon pain patients, it is extremely important that providers be advised to treat them with compassion and respect.  Stigma, shame and puritanical morals-based thinking that paints people with pain as having “character flaws” only inflicts more harm and makes it more difficult for them to get help.

Finally, although the CDC has abandoned its previous recommendation that daily opioid doses not exceed 90 morphine milligram equivalents (MME), I can't help but notice new language in the guideline draft that cautions doctors about exceeding 50 MME, a dose that is low for many patients. I fear that 50 MME will be taken above all the other verbiage of the 2022 guideline and be enforced as the new hard limit.

The revised guideline is a small step in the right direction, but patients need more than a band aid for a stab wound.

Emily Ullrich lives with CRPS, Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, endometriosis, Interstitial Cystitis, migraine, fibromyalgia, osteoarthritis and chronic pancreatitis.

Pain Patients Have Low Rates of Illicit Drug Use

By Pat Anson, PNN Editor

Anti-opioid activists have long claimed that opioid medication is a gateway drug to heroin and other street drugs. That myth is so ingrained in the medical community that many pain patients are discriminated against by doctors and pharmacists, who suspect they are abusing their medication or using illicit drugs.

But a large new study by Millennium Health pokes a hole in that myth, finding that patients being treated in pain management practices are far less likely to use heroin, fentanyl, cocaine and methamphetamine than other patients.

The drug testing firm analyzed the lab results of two million urine tests from 2015 to 2021 – nearly 600,000 coming from pain patients -- and found that patients seeing primary care physicians, behavioral health doctors (psychiatrists and psychologists), or getting substance use disorder (SUD) treatment were significantly more likely to test positive for street drugs than patients of pain management providers.

SOURCE: MILLENNIUM HEALTH

“That’s one of the reasons why we decided to put this out there in the public domain, because it’s important. Because clearly there are differences across these groups,” said Eric Dawson, PharmD, Vice President of Clinical Affairs at Millennium Health.

For example, the positivity rate for fentanyl in urine samples is about 2% for pain management patients – a level that remained stable throughout the 6-year study period.

But Millennium found that for primary care and behavioral health patients, the positivity rate for fentanyl has ticked up to about 5 percent.

In patients getting SUD treatment, the positivity rate has skyrocketed to about 17 percent, no doubt a reflection of the growing presence of illicit fentanyl in street drugs.

Positivity rates for methamphetamine are also rising for most patients – but not for pain patients – while cocaine use has remained relatively flat. Positivity rates for heroin have declined steadily for all patients since 2015, according to Millennium.

“Generally speaking, the pain population that’s treated with opioids is an older population and uses illicit drugs at a very low rate,” said Steven Passik, PhD, VP of Scientific Affairs and Head of Clinical Data Programs at Millennium.

“Not only are they low, they remain low,” says Dawson. “So many of the other groups, over time their positivity rates are increasing. The pain population started low and remains low. And that says they are different than the other groups.”

What makes the findings even more striking is that they include the first two years of the covid pandemic, a time when stress, isolation and depression led many people to abuse drugs.

“But that did not happen in the pain patients. You can actually see that,” says Passik, who believes regular drug testing makes pain management patients less likely to take risks that might affect their healthcare. He thinks the Millennium study should be reviewed by both providers and policymakers to get a better understanding of people in pain.

“There isn’t that much data like this out there. I think it’s unique and very positive about this population. And I think that should be factored in when people are talking about access to opioids,” Passik told PNN.

In addition to fentanyl, heroin and other street drugs, the Millennium study also looked at positivity rates for marijuana, which have soared in recent years due to the legalization of medical and recreational cannabis in many states. By the end of 2021, the positivity rate for cannabis had reached nearly 32 percent for most patients. But, like the other drugs, cannabis use remained relatively low for pain patients.  

Why CDC Dropped One-Size-Fits-All Approach to Pain Care

By Pat Anson, PNN Editor

The reaction from patients, advocates and the medical community to a revised draft of the CDC’s opioid guideline has largely been positive, with many cheering the flexibility it gives doctors in deciding whether to prescribe opioids for pain.  

Although voluntary and only intended for primary care physicians, the original 2016 guideline’s dose limits became hard thresholds for doctors in all specialties, who feared scrutiny from regulators and law enforcement if they didn’t follow them. The revised draft still recommends caution when prescribing opioids, but emphasizes that physicians should use their own judgement.

“Treating pain is complex. There are a variety of factors at play. And we know that patients respond differently to different types of pain. We tried to incorporate that nuance so that we’re not coming out with something that’s a one-size-fits-all. It really needs to be individualized and flexible,” said Christopher Jones, PharmD, Acting Director of the CDC’s National Center for Injury Prevention and Control.”

People who’ve been closely following the guideline process were surprised at how extensive the changes are. At a July 2021 public meeting, an independent panel advising the CDC expressed alarm that the agency seemed intent on keeping a recommendation that opioid doses be limited to no more than 90 morphine milligram equivalents (MME) per day.

In the last six months, that dose threshold was taken out of the revised draft, which was published Thursday in the Federal Register.

“It was exciting to open up the draft and see a significant pivot,” said David Dickerson, MD, who chairs the American Society of Anesthesiologists’ Committee on Pain Medicine. “I think the CDC authors have acknowledged that they wanted to do it different this time.”

Dickerson was not only pleased to see the 90 MME threshold go away, but a stronger focus on the many different types of pain, whether its temporary acute pain from surgery or chronic pain from a disabling, incurable disease.  

“I think the text of this manuscript is really well done in its draft form right now. When I read through it, it was a great refresher and highlighted some studies that perhaps I had missed,” Dickerson told PNN. “They are instructive, they’re specific, but they also have an intentional vagueness to them to allow for clinicians to practice medicine.”

Importantly, the guideline also makes clear that it shouldn’t be used by third parties to dictate how pain should be treated.

“This voluntary clinical practice guideline provides recommendations only and is intended to be flexible to support, not supplant, clinical judgment and individualized, person-centered decision-making. This clinical practice guideline should not be applied as inflexible standards of care across patient populations by healthcare professionals, health systems, pharmacies, third-party payers, or state, local, and federal organizations or entities.”

“States and insurers have turned the guideline into laws and unbending regulations, preventing physicians from treating patients as individuals with specific needs,” Bobby Mukkamala, MD, Chair of the American Medical Association’s Board of Trustees, said in a statement. “The list of misapplications of the 2016 guideline is long, and its impact has been tremendous harm.

“The CDC’s new draft guideline — if followed by policymakers, health insurance companies and pharmacy chains — provides a path to remove arbitrary prescribing thresholds, restore balance and support comprehensive, compassionate care.”

Nearly 40 states have codified the 2016 guideline in some way, often by limiting the number of opioid pills that can be dispensed for an initial prescription to seven days’ supply or less.  Dickerson hopes those states will review and revise their laws and regulations to better reflect what the CDC recommends in its revised draft – that enough opioids be prescribed for “the expected duration of pain.”

“We should right-size our care for the individual patient and be procedure specific. Before it was one-size-fits-all, three to seven days’ (supply),” Dickerson said.  

He also thinks the Department of Justice (DOJ) and Drug Enforcement Administration (DEA) should reconsider their aggressive prosecution of doctors for prescribing high doses.

“The work that the DOJ and DEA is doing, I want to believe is done in good intent,” he said. “I think that many of their cases will look at the prescriptions or the doses, but they might not look at the context for why the patient was receiving that care or why they were receiving those medicines.”   

The CDC is not expected to finalize its draft guideline until late this year. You can read the guideline and leave an online comment in the Federal Register by clicking here. Comments must be received by April 11.

Revised CDC Opioid Guideline Gives Doctors More Flexibility

By Pat Anson, PNN Editor

The Centers for Disease Control and Prevention has released a long-awaited draft revision of its 2016 opioid prescribing guideline, making significant changes to recommendations so that healthcare providers have more flexibility in how they manage pain.  

Although voluntary and only intended for primary care physicians treating chronic pain, the original guideline was widely misapplied as a rigid “standard of care” by many states, insurers, providers and law enforcement, causing millions of patients to be taken off opioids or forcibly tapered to lower doses. As result, many went into withdrawal, became bedridden and disabled, committed suicide or were abandoned by their doctors. And while opioid prescribing declined, drug overdoses soared to record levels.  

“We certainly have learned and recognized the harm that has resulted when aspects of the 2016 guideline have been applied as inflexible, rigid standards that really go beyond the intent of what we wanted to occur,” said Christopher Jones, PharmD, Acting Director of the CDC’s National Center for Injury Prevention and Control. “We wanted to be very clear in this guideline that this is a clinical tool. It’s intended to support individualized patient centered care.

“There is a role for opioids in pain management and if the decision between a provider and a patient is to use them, here’s how we think that can be done in a safe manner.”

The updated draft guideline has been published in the Federal Register, where it will be available for public comment for 60 days. A final revised document is not expected until late this year.

Perhaps the most significant change to the guideline is the elimination of dose thresholds. The original guideline strongly encouraged providers not to exceed daily opioid doses of 90 morphine milligram equivalents (MME).

The revised guideline still maintains that opioids should not be used as first-line or routine therapy for pain, but takes a more nuanced and flexible approach to dosing. Providers are urged to be careful about increasing doses above 50 MME and to weigh the individual needs of each patient.

The revised guideline also has a strong warning to providers not to abruptly taper patients. And it drops a previous recommendation that limits the initial supply of opioids to a few days for acute, short-term pain. Rather than a specific number of days, the guideline recommends that opioids be provided for the “expected duration of pain severe enough to require opioids” – essentially leaving it up to providers to determine how long that may be.  

“I think we want to avoid something being seen as a rigid standard of care.  We’re quite explicit that is not the goal here,” Jones told PNN in an exclusive interview. “I think we’ve tried to frame the recommendations with more nuance than what was done in 2016, based on the latest science and feedback from the clinical community and patients that when there are hard thresholds, it is very easy for those to be misapplied and go beyond the intent of why they were there.”

‘They Listened to People in Pain’

Patients advocates who have lobbied the CDC for years to withdraw or revise the 2016 guideline were generally pleased with the updated version.

“I feel like they listened to people in pain,” says Kate Nicholson, Executive Director of the National Pain Advocacy Center and a member of the “Opioid Workgroup” that advised the CDC as the guideline was being rewritten. “It’s better than I feared. It’s trying to be more balanced. And I do feel there’s some intent to listen to people with pain and their experience, and acknowledge the guideline’s flaws. You’ve got to be grateful to them for that, that they listened. It’s a pretty big change for a federal agency.”

“The wording of the recommendations themselves is much improved over the 2016 version. In particular, the elimination of specific dosage numbers is welcomed because those were very easy for policymakers and payers to latch onto in setting policies,” said Bob Twillman, PhD, former Executive Director of the Academy of Integrative Pain Management.  

“While it's good that they are removing those, I fear that it's a bit like closing the barn door after the horse has escaped. There is a lot of work that needs to be done to modify or eliminate policies that were tied to the specific numbers in the 2016 guideline, and I'd like to see CDC play a role in that work.”  

Twillman, who was a stakeholder consulted by the CDC during the drafting of its original guideline, said he was pleased to see the agency caution against the use of “step therapy,” which requires insured patients to try non-opioid treatments first before moving on to stronger pain relievers. He believes treatments should be decided by patients and providers, not insurers.    

“I'm gratified to see that they did what I advised them (twice) to do with the 2016 guideline, in that they are calling for clinicians and patients to jointly determine the goals of care,” Twilllman said in an email. “That is absolutely vital, and it's really nice to see the emphasis on that. Developing some tools that help patients and clinicians do that seems to be a task that needs to be done.” 

The transparent rollout of the revised guideline is in marked contrast to how CDC handled the release of the original guideline in 2015, a process that was cloaked in secrecy and included little input from patients or pain management experts. The agency initially refused to disclose who they consulted with, which included several anti-opioid activists.

The CDC’s secrecy sparked distrust in the pain community, which only worsened when the agency ignored early complaints that the guideline was being misapplied. It wasn’t until 2019 the CDC admitted the guideline was harming patients and that revisions were needed.

Six years have now passed since the original guideline was released. More work remains and the CDC is hoping to get additional feedback from patients, providers and others on its revisions.

“It’s important to point out that the guideline is not final and the step that we’re at now is a real critical point in the process to wrestle with and get feedback on the issues that you’re raising,” said Jones. “And that’s why it’s important that we hear from readers of Pain News Network to get feedback, to get that experience, so as we move toward a final guideline, we can incorporate that feedback. We hope that insurers, medical community, law enforcement and others will also review the guideline and provide feedback.”

You can leaver an online comment in the Federal Register by clicking here. Comments must be received by April 11.

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.

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.”  

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.

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.

Saving My Soul From a Real-Life Dopesick

By Cynthia Toussaint, PNN Columnist

While watching Dopesick, the Hulu series that dramatizes Purdue Pharma’s driving of the opioid crisis through their cash-cow OxyContin, I was traumatized to the point of hitting the pause button at least half a dozen times.

The filmmakers were so spot-on with their story telling, I anticipated and said names and organizations out loud before the actors did. You see, I was in the middle of this evil. And I was asked to be a part of the killings for money.

Watching Dopesick reminded me of those god-awful times. Recounting the untold number of people who got addicted to OxyContin and overdosed made me sick. Knowing Purdue and its accomplices nearly got away with it made me sick. How close I was to it all turned my stomach.

In 2003, about a year after I founded For Grace, I was deep in the planning of a California Senate hearing that would shed light on gender care bias toward women with high-impact pain. I loved every crazy-busy moment of this endeavor to give voice to women dismissed by the words, “It’s all in your head.” I was ecstatic to have three female state senators co-sponsoring my hearing that, to this day, remains the most requested event video in Capitol history.     

Out of the blue, Purdue Pharma’s Director of Community Outreach phoned. I’d never heard of Purdue before, but upon overhearing the call, my partner John handed me a note, telling me they were a pharmaceutical company that funded nonprofit pain organizations.

I was flattered that Brenda (not her real name) loved the work I was doing with the hearing, but more than a bit miffed when she recommended her own advocacy people be able to testify. As a start-up nonprofit, For Grace sure as hell needed underwriting, so I agreed to call and get to know her folk. What could it hurt?

I was pleasantly surprised when they were friendly and knowledgeable and, in the end, I chose to go with half my people and half Brenda’s that I and the senators’ staff vetted.

Things went sideways the morning of the hearing when Purdue and those who would testify met with us at the Capitol. After brief intros, Brenda asked for my written testimony and quickly edited it in red pen. I was infuriated by this unwelcomed intrusion.

Still fuming, I arrived late to my own senate hearing as I’d been yelling at John that they had no right to change my testimony just because they’d paid to fly some people in. Who the hell do these creeps think they are?                  

After the successful, standing room only hearing, I was beyond stoked and let the bad energy of the morning pass over dinner with legislators and staffers I adored.

Also in attendance were Purdue and their speakers. That night, at Purdue’s suggestion, we began laying the groundwork for a “Women In Pain” coalition. I was in heaven with the prospects of giving my movement a bigger platform.   

cynthia toussaint (right) testifying at 2004 hearing

Women In Pain (WIP for short) was For Grace’s exciting new project and the cause I wanted most to lead. Springing from a 2001 medical study entitled “The Girl Who Cried Pain” and a follow-up article in The New York Times on the neglect women face in getting their pain treated, I couldn’t wait for the world to learn about WIP. To have a coalition of nonprofit pain leaders and a deep funder behind our movement was a dream.

A dream that would slowly erode into the ugliest kind of nightmare.

When the coalition and Purdue began meeting, the first order of business was to establish an understanding that everyone would be working under For Grace’s umbrella, as we initiated the WIP concept and felt a deep ownership. In fact, we were strongly considering expanding our mission from CRPS awareness to the plight of all women in pain.

Though I’m known for my work ethic, I soon felt overwhelmed by my load. To keep up with For Grace’s everyday activities and the coalition’s needs, John and I were grinding through long hours, seven days a week.

Almost out of the gates, we were getting pushback from coalition members about seemingly everything. Jealousies erupted as I was getting the lion’s share of media attention due to my hustle and drive. Per their demands, I generated media coverage for all members, but that wasn’t enough. Some of them wanted me to script out their answers for interviews. I was beginning to feel beaten.  

‘The Correct Response’

One day I received a call from Purdue inviting me to give the keynote address for pain advocacy conferences they were underwriting in Denver and Philadelphia. The purpose of these events – or so I was told – was to train and inspire pain leaders to effectively interface with media and policy makers.

The person who’d be overlooking this affair was Dr. Richard Sackler, the grand dragon of the family-owned Purdue empire. At the event, Purdue minions were twisted like pretzels in their desire to please this unimpressive man, who struck me as distant and cold.

I was insulted when Purdue insisted that I take a media training class. In a taped, mock interview with their crisis management consultant, I was asked, “What treatment do you advise when a person gets a CRPS diagnosis?”

“Well, there’s a whole range of options out there, including alternative ones,” I answered, spreading my hands a yard wide. “Remember, what works for one person may not work for the next.”

Purdue’s consultant chided me. “As the up-and-coming pain star, you should rethink your answer. The correct response is to take OxyContin,” she said.

Stunned, I responded, “But that would kill people. There’s nothing to rethink.” I felt trapped in a queasy Twilight Zone episode, as not a soul in the crowded room of pain advocacy leaders and healthcare professionals backed me up.

That night, ensconced in our five-star hotel room, it dawned on John and me that everyone in this scheme was training to be a de facto sales force for OxyContin. We were the only schmucks not in on it, though Purdue was actively grooming me to be their #1 patient sales person.           

This bizarre, shady gathering left me with a rancid taste and my enthusiasm curbed for the coalition. But I forged on, at the behest of my advisors, to give Purdue a fair chance to find common ground, a notion I now laugh at.

Next, Purdue offered me an extraordinary opportunity to make WIP fly in an influential, national arena. I was invited to bring our project to “Women In Government”, a powerful organization comprised of female state legislators throughout the country. Thrilled, I introduced my cause at their western regional meeting in Honolulu, then prepared to close the deal at their annual conference in Tucson.

I must admit, I was enjoying Purdue’s lavish courtship – travel, the chauffeur-driven town cars, the choicest suites and the finest meals. After all, I’d earned these perks, I told myself. I was working damn hard and was extremely effective with my message. I knew I was good at what I was doing and it was gratifying to be recognized.

But Purdue continued their insidious attempts to control me. Before my speech, Brenda chided that I’d better knock it out of the park as they were spending a small mint. Further, I was not to go one nanosecond over my 20 minute speaking limit, or else! Hmmm, not the good luck pat on the back I’d hoped for.

Fuming, I made a beeline for the event coordinator, telling her of Brenda’s abuse. Her face turned beet red, angrily telling me that Purdue didn’t run their show. This kind woman reassured me to take a deep breath, then go out and do my thing. So I did.

During my standing ovation, the director came over and hugged me with eyes welling. Joy confided with the room her ongoing bout with chronic pain, along with her ringing endorsement of the WIP movement. Then I was circled by legislators, shaking my hand and thanking me. Most important, they said they’d do whatever I asked.

Later that day, Brenda showed me first-hand what my advocacy future would look like if I played nice with Purdue. During a special session, I watched a Broadway-level singer/actor/cancer survivor entertain the audience, giving them an update about her cause to promote a cervical vaccine. She was living my advocacy dream job – traveling the world, performing, making great money, all the while helping people. That afternoon, she captivated the room.

I had stars in my eyes. For the first time since losing my performance career at 21 due to CRPS, I was being offered a job that would completely feed me. And it was a more noble pursuit than entertaining, as I’d be helping, even saving, many people. But could I get Purdue to come around? They wouldn’t want my services solely to peddle OxyContin, right?

There’s much bigger fish to fry with our shared mission (or so I thought) to put chronic pain and gender care bias on the map. This was my great passion, and I was determined more than ever to thread that needle.

Purdue Wants More

But my naïve hope didn’t float for long. When we restarted our coalition meetings, the women were stone cold toward me, and I felt punished. Their jealousies were amping, and managing all the egos and expectations added to my overload.  I began feeling itchy that the coalition was grinding me to dust in an attempt to heist the project, leaving For Grace behind. The walls were closing in.

I called Brenda and voiced my concern. Oddly, she was warm and reassuring, voicing that, per our agreement, the project would never be taken away from For Grace. To the contrary, she said we were approaching a tipping point where the WIP movement would explode.

I was calm, for about a minute.

On the next call, the gates of hell broke open. The women were backing unethical suggestions from Purdue, including supplying a prominent link from our WIP website to Purdue’s OxyContin marketing page.

John went nuts, sternly stating that was a “slippery slope.” He exploded, “If we give them that link for their money, they’ll want more. And more!"

The women yelled him down, saying For Grace didn’t know how business worked. The back and forth warring finally ended when I pronounced, knowing full well Purdue was on the call, “I won’t be a whore for a pharmaceutical company.” The sounds of phones hanging up followed.

Soon after, I saw in a coalition member’s nonprofit newsletter that she and the others were launching a new organization. It was called “Women With Pain” and parroted our mission. Around that same time, I was abruptly dropped from planned media stories and speaking engagements. Clearly, Purdue’s tentacles ran far and wide. When I threatened to speak to the media about their dirty deeds, Purdue called with a bevy of their attorneys in tow, telling us thuggishly to put a cork in it.

I cried, I yelled, I screamed, I even begged God for mercy. What I’d given birth to had been heisted, and was going to be used to kill people. John and I got deeply ill with what I thought was an epic flu, but looking back, I see it was despair. I became despondent and we were convinced there was no path forward with the good work. Worse, I started thinking deeply about ending my life. I didn’t want to live in a world this soulless.

Saving My Soul

But the fire within hadn’t burned out, and after ample time to grieve, I was able to get out of bed. I was further lifted by For Grace board members who prodded me to not let the bad guys win. Ultimately, I saw that good things could be possible again.

While formally expanding our mission to Women In Pain, I used my persuasiveness to get the pro-bono services of a top-end intellectual property attorney. He sent every coalition member a cease-and-desist letter, advising them not to use the name and idea inspired by For Grace.

I was elated that the letter hit its mark. In fact, the rival organization’s name and announcement were taken down the very next day. Shortly after, I was informed the new coalition was dead on arrival and I knew I’d gotten Purdue, a multi-billion dollar corporation, to buckle.

That’s how I saved my soul from the Sackler family and their savage empire. And I’ve never looked back. Until now.

Those terrible years of trauma surged back while watching the evil dramatized in Dopesick. I was reminded that everything Purdue touched turned to rot. Worse, with few exceptions, everyone enabled them. Without hesitation, they all lapped up Purdue’s dirty money. To make this level of killing possible, Purdue bought support from a wide range of villains: the FDA, policy makers, healthcare professionals and, yes, pain patient advocates. You know who you are.

For years, I’ve watched bad people with bad organizations take bad money to do bad things. And the opioid crisis that Purdue spearheaded has made collateral damage of all of us with pain. Many who need opioids to functionally survive no longer have access.  Many good doctors who responsibly prescribed have been indicted. And for ethical pain organizations who still want to do good work, funding has dried up. I think it’s fair to emphatically state that everyone with pain is suffering in the wake of Purdue’s and their enablers’ sins.               

With apologies, I don’t have my usual up-beat take-away, no words of comfort. Just tears, and a plea. Watch Dopesick, study it, commit this atrocity to memory. Take my word, the pharmaceutical industry is doing just that, and there’s another Purdue in the making that will attempt to make billions off the suffering and murdering of millions. All in the name of pain care. 

I was this close to being one of Purdue’s statistics. But I lived to tell my story. Perhaps it’s not foolish to hope next time more souls will be saved.

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for nearly four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”