DEA: Drug Cartels Targeting Pain Patients as Potential Customers

By Pat Anson, PNN Editor

The Drug Enforcement Administration’s “National Drug Threat Assessment” is an interesting annual report that gives insight into drug trafficking and drug abuse trends in the United States that you don’t often see in the mainstream media..

The DEA’s 2020 report, released this month, is no exception. One hundred pages long, it covers a broad range of “unclassified” information about drug cartels, counterfeit medication and emerging trends in drug abuse.

“Although we have made progress in driving down the abuse of controlled prescription opioids, the United States continues to face challenges from both new and persistent threats,” said acting DEA Administrator Christopher Evans.

According to the DEA report, the diversion and abuse of opioid painkillers and other controlled prescription drugs (CPDs) are at their “lowest levels in nine years.”

While opioid pain relievers remain the most commonly abused type of prescription drug, most people don’t take them to get high.

The DEA said nearly two-thirds (64%) of drug users “identified relieving pain as the main purpose” for their misuse of painkillers – a staggering statistic that may say more about the poor state of pain care in the U.S. than anything else.

Ironically, the second most widely abused opioid medication was buprenorphine, which is combined with naloxone in addiction treatment drugs such as Suboxone and Zubsolv. The National Forensic Laboratory (NFLIS) reports that buprenorphine is abused far more often than methadone or hydrocodone, and appears poised to soon replace oxycodone as the most commonly abused prescription opioid. 

“Drug data reveals that buprenorphine reports from all participating federal, state, and local laboratories increased each year except a minor drop from 2018 to 2019. (NFLIS) reported a 50 to 67 percent decrease of hydrocodone, methadone, and oxycodone reports from 2014 to 2019, so the 27 percent increase of buprenorphine during that time frame was significant,” DEA said.     

Fentanyl Laced Counterfeit Pills

Not surprisingly, the DEA said illicit fentanyl was “primarily responsible for fueling the ongoing opioid crisis,” with Mexican drug cartels controlling most of the supply for the potent synthetic opioid. With hydrocodone, oxycodone and other legal opioid medications in short supply — and a lot of people with poorly treated pain — the DEA believes drug cartels are actively targeting pain sufferers as potential customers for counterfeit medication.

“The spread of fentanyl-laced counterfeit pills in the United States is likely due to Mexican TCOs (Transnational Criminal Organizations) seeking to further distribute fentanyl into prescription opioid user populations,” the DEA said. “The increasing number of counterfeit pills resembling prescription medications and users who may be pivoting to abusing illicit substances with waning CPD availability may prove to be a significant threat into 2021.”  

The counterfeit pill of choice for the drug cartels are fake 30mg oxycodone tablets, stamped with an “M” on one side and “30” on the other.

Known on the street as “Mexican Oxy” or “M30s,” the DEA says the blue tablets “demonstrate that traffickers are taking advantage of an established market for these pills.”

Illicit fentanyl tablets appear to be getting more lethal, with laboratory tests showing 26 percent of them containing a potentially fatal dose of fentanyl in 2019, compared to just 10 percent in 2017.

In one chilling paragraph, the DEA seemed to acknowledge it was losing the war on drugs to Mexican cartels and local criminal gangs.

“Barring significant, unanticipated changes to the illicit drug market, Mexican TCOs will continue to dominate the wholesale importation and distribution of cocaine, heroin, marijuana, methamphetamine, and fentanyl in U.S. markets. No other criminal organizations currently possess a logistical infrastructure to rival that of Mexican TCOs. Mexican TCOs will continue to grow in the United States through expansion of distribution networks and continued interaction with local criminal groups and gangs,” the agency warned.

Sometimes what is not disclosed in the DEA’s report is just as revealing as what is actually said. For example, while the DEA officially lists kratom as a “drug of concern” and even tried to ban the herbal supplement in 2016, the agency has never said a word about kratom in its annual threat assessment. Not in 2020. Not ever.  

Why is that? Is kratom not addictive or dangerous, despite all the public hand-wringing over the years by the Food and Drug Administration? In a 2018 letter to the DEA recently made public, federal health officials quietly withdrew their request to schedule kratom as a controlled substance because of “lack of evidence” it can be abused or posed a public health threat.

Low-Dose Ketamine Effective in Treating Trauma Pain

By Pat Anson, PNN Editor

Low doses of ketamine are just as effective at treating trauma pain in emergency room patients as larger standard doses, according to a new study by researchers at Loyola University Medical Center in Chicago.

Ketamine is a non-opioid that’s been used for decades as a surgical anesthetic, but in recent years it’s increasingly being used to treat short-term acute pain in hospital emergency rooms. A standard dose of ketamine administered intravenously is 0.30 mg/kg, but Loyola researchers wanted to see if half the normal dose could be just as effective.

"We challenged the conventional ketamine dose used to treat pain," said lead study author Shannon Lovett, MD, an emergency physician at Loyola University Medical Center (LUMC). "Our study should help demonstrate that a lower dose is sufficient to treat pain."

Lovett and her colleagues recruited 98 patient volunteers who were in moderate to severe acute pain. Half received just 0.15 mg/kg of IV ketamine, while the other half received the standard dose. Both patients and providers were “blinded” on which dose was being administered.

After 15 minutes, patients in the standard dose group had a greater reduction in pain, but experienced more side effects such as dizziness, mood changes and hallucinations. After 30 minutes, adverse events and pain levels were similar in both dosing groups.

Asked if they would take ketamine again, 76% of patients in the low-dose group said yes, while only 62% in the standard dose group said they would.

"As we continue with our research, we hope to find data that supports diminished side effects with the lower dose of ketamine with equal efficacy in treating pain," said senior author Megan Rech, PharmD, an emergency medicine pharmacist at LUMC.

The study findings are reported in the journal Academic Emergency Medicine.

Researchers said there is “robust evidence supporting the use of ketamine as an alternative to traditional opioids across a wide range of doses,” but its effectiveness is usually short-lived. Ketamine does not have a significant analgesic effect after 60 minutes. It also puts patients into a hypnotic, dream-like state in which they appear awake, but are unresponsive. For that reason, ketamine is only administered under medical supervision.

A growing number of outpatient clinics provide off-label infusions of ketamine for depression, post-traumatic stress disorder (PTSD) and difficult chronic pain conditions such as Complex Regional Pain Syndrome (CRPS). The infusions are usually not covered by insurance.

A pilot study is underway to see if an oral version of ketamine and aspirin, combined in a tablet, could be used to treat pain at home.

My Cancer Is Back: Facing Surgery With CRPS

By Cynthia Toussaint, PNN Columnist

After hearing the worst words of my life, “Your cancer has grown back,” I felt hopeless and hated the world. Worse, I had to tell my longtime partner and caregiver, John, the grim news. How could we pull up our frayed boot straps again and survive yet another impossible health crisis?

Since getting Complex Regional Pain Syndrome (CRPS) four decades ago, people often use words like “fighter,” “pain warrior” and “super human” to describe me. The most recent catch phrase is, “Cynth, you got this!”

I’ve come to detest this perceived awesomeness. I don’t want to be an uber-person. I never did. I’m tired. I’m so, so tired. And I long for a slice of vanilla-flavored normal.

As the owner of CRPS and 19 comorbidities, I could not afford the diagnosis of triple negative breast cancer, the most aggressive form. But that’s what was delivered, since luck has never been this lady’s lot.

Without consulting me, the universe long ago decided that I’m supposed to slay every dragon while surviving never ending illness and trauma. This latest hell-news has filled me with anger, rage and major depression.

So much so, that for the first time ever, I’m isolating. This social butterfly has returned to her cocoon, unable to feel joy.

I can’t sleep as I’m plagued by night terrors. Each afternoon, my body trembles uncontrollably. Once heavenly activities, like meditation, exercising and eating, are now chores.

John massages my taut muscle tension through the days and nights – and my IBS has gone haywire. My bubbly spirit is absent and what’s left is demoralized.

And not so long ago, I thought I had this thing licked.

Early last year, after six months of weighing my impossible-with-CRPS treatment options, I started aggressive chemotherapy knowing that this regimen could leave me with a life not worth living. The dream was that my pain would stay in check and I’d achieve a Clinical Complete Response (cancer that cannot be seen with imaging). I’m certain chemotherapy almost ended me, as I was left with virtually no immune system. As a bonus, this was during COVID. 

I was coined a “super responder” when I miraculously accomplished a complete response. At that point, the odds were strongly in my favor that the cancer was gone. But the only way to be sure was to do the follow-up standard of care surgery, which I chose to forego because, with CRPS, surgery is, well, not an option.

The doctors were floored by how well I did, and every indicator leaned toward a clean pathology report. I was ready to move on with my life, one that I felt I’d earned by doing everything right (diet, exercise, stress management, good sleep – the whole kit and caboodle!) One doctor commented, “Don’t even look at the survival numbers. They don’t apply to you anymore.”   

True to form, things went as far south as possible. Because I’m one of the unlucky ones who’s cancer stem cells never went away, my malignancy is growing back. This is not a “recurrence,” but a “persistence” because the chemo didn’t hold.

And now that my complete response is gone, I’ll never have my prior odds. John has lamented for years, “You NEVER get a break!” and I’m finally seeing it his way.

For a chance of survival, I must now have – ta daaa!! – surgery. The doctors tell me my best shot is to do a lumpectomy with follow-up radiation or a stand-alone mastectomy.

Tragically, radiation is off the table as it often causes neuropathic pain. In fact, a radiologist who I respect told me flat out, “I can’t ethically do it to you.” And during a recent visit with my surgeon, she strongly advised that, due to CRPS, I’m not a candidate for a mastectomy, let alone reconstructive surgery. Wow.

Finding a New Care Team

Adding insult to injury, out of nowhere, my lead oncologist dropped me! She did so due to questionable guidance (something I can’t detail here) and is fearful of litigation, which doesn’t make it hurt less. This woman had become my hero and I trusted her with my heart and life. Her betrayal has been soul-crushing and created a crisis of faith. I don’t know who or what to believe in anymore.

But through the shadows, I’m quietly planning my next move – and will take on Round Two one slow... step… at… a... time. I’m assembling a new-and-improved care team to up my odds, including an oncologist, acupuncturist, physical therapist, pain specialist and psychologist. I’ve sweetened the pot with an EMDR (an effective technique for trauma release) practitioner who specializes in people with CRPS. Heck, I’ve even lined up the use of a heated pool in these COVID shutdown days.    

I’m going to have a lumpectomy, a word I can still barely say, let alone write. The scariest part is that my surgeon will also remove a possibly involved lymph node in a nerve rich area, ripe for ample, new pain. My new oncologist is concerned that due to a surgery-induced CRPS flare, my arm may freeze up and become a non-functional torture machine.

Even if the surgery mercifully works without condemning me back to bed, this wouldn’t flip me a “get-out-of-jail-free” card. Because I can only do the “minor” surgery without radiation, my odds of a quick recurrence remain high. This means I’ll be on the prowl for some off-the-grid insurance, perhaps low-dose chemo or an immunotherapy clinical trial. But neither can measure up to the standard of care radiation.

God, to be well enough to be sick!         

So, here I am again, looking down the barrel of a gun, knowing it likely has a bullet with my name on it. Like I said, I’m tired and angry. I’m up to my ass with picking the lesser of two evils, and having to crack the code of the near impossible.

Give me a break, already! And I don’t mean this in a small way. I’m shouting out to the big, bad, ice cold universe that I hope, somewhere, somehow, has a heart.

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.” 

How You Can Change the Public Conversation About Pain

By Richard Lawhern, PhD, PNN Contributor

Because I am highly visible as a healthcare writer and advocate for people in pain, I receive many inquiries from people who have been deserted by their doctors and denied effective treatment.  Many ask me, “What can I do?” 

My answer is that many of our problems with pain treatment began with the guideline on opioid prescribing for chronic non-cancer pain, published in 2016 by the U.S. Centers for Disease Control and Prevention. The CDC is currently updating its recommendations, with the goal of releasing a revised guideline for public comment late this year. Without major change or outright repeal of the guideline, nothing will change and much may grow worse.

CDC management knows that they messed up -- they’ve been told so repeatedly over the last five years by both doctors and patients.  But still they dither and delay, and refuse to act on behalf of millions they have harmed.

Congress has added insult to injury with misdirected legislation blaming doctors for the substance abuse of people who never saw a doctor for pain.  And the Drug Enforcement Administration continues to drive doctors out of pain practice by targeting and persecuting those who prescribe opioid medication for people in agony.   

We can no longer depend on the CDC and DEA to do the right thing. They are too concerned with defending their earlier and ongoing misbehavior.  Instead, we’re going to have to change a lot of minds in Congress, the Executive Branch, and at the state level to force change by legislation. Thousands of patients, caregivers and doctors must lobby if change is to happen.  

How Do We Lobby Effectively? 

We don’t have the money to hire lobbyists. Law firms won’t sue without millions of dollars in retainers up front.  Most legislators don’t actually read emails, even from their own constituents, and increasingly they lock out emails from anyone who doesn’t vote in their districts. Petitions don’t work either, even when we have 100,000 signatures behind them.   

So what can we do? We can phone our legislators to demand change, and we can reach out to editors, publishers, radio and TV news anchors to ask that they show the public “the other side” of the opioid crisis.

It may seem that one person acting alone can’t do much.  But thousands of people acting consistently sometimes can.  We need patients, caregivers and medical professionals to contact their legislators and regulators.  Not just once, but every week.  Your congressional representatives in the U.S. House and Senate, as well as state legislators, can all be candidates for a phone call.  

To learn their names, first do a Google search for “legislators” plus your zip code. You might need to explore several “hits” to find the phone numbers for local congressional offices and the offices of your state legislators. Other possible contacts to explore:  

• U.S. National Office of Drug Control Policy 

• Office of the Governor  

• State Health Department

• Executive Director of your State Medical Board 

• State office of the Drug Enforcement Administration 

• State Attorney General 

Two important websites may reduce the burden of multiple Google searches to locate these people. The Chronic Illness Advocacy & Awareness Group (CIAAG) has links to a national directory of legislators and regulators by state; a library of resources and research; “How to” advocacy guides; and templates for calling and meeting with legislators. Similar resources can be found at Pain Warriors Unite, which also has a large archive of related information and advocacy guides.  

What Should We Tell Them?

When you locate the phone numbers of legislators and regulators, the next task is to phone their offices and talk to them or their staff. 

When you call, you might find that the office isn’t answering their phones.  If you can leave a message, then state your name and callback number. Tell them you are a voter in their state or district, and you want to talk with their healthcare policy staffer about how bad policy and restrictions on pain treatment are destroying your life. Hang up politely.

If you reach anyone in real time, it will almost always be a staffer.  As you speak, try to listen for their responses and be respectful.  Here is a possible script.  Practice it aloud before you make your calls, so you are comfortable with what you want to say: 

“Good morning” (or Good afternoon). My name is ___________ and I vote in ______ (State or District number).

“May I ask your name, please?”   [Make a note for later follow-up]

“I’ve been a chronic pain patient for __ years and under doctor’s care for several complex pain issues.  Right now, my life is a wreck because doctors have been terrorized by government authorities. Nearly half of primary care clinics in the U.S. are refusing to accept new patients on opioid pain relievers, even though pain is the number one reason why people see a doctor.  Many practices that still treat pain are rapidly force-tapering patients off opioids, or below effective treatment levels.”

You should include some personal details about what your life is like without adequate pain management. An example might be:

“I literally cannot get out of bed many days, because I am in agony from under-treatment of my pain. I can’t work, do simple chores, or leave the house for basic necessities without help. 

The so-called ‘prescription opioid crisis’ is bogus.  Doctors prescribing opioids for their patients didn’t create our public health crisis with addiction and overdose deaths. Pain patients almost never become addicted. For millions of us, opioids are the only thing that gives us any quality of life.”

End with a call for action. Ask them to do something with the information you give them.

“People like me need your boss to sponsor legislation to fix this mess.  We need him (her) to help stop the widespread persecution of doctors who prescribe medical opioids for people like me.

Restrictions on access to effective pain care are driving thousands of us to buy street drugs for relief or to even consider suicide. If your boss doesn’t act to stop this disaster, then he (she) will become an accessory to it.”

End the call by asking the staffer to add notes from the call to their office phone logs, and to brief the office Chief of Staff or legislator. Ask for a call-back from that individual, confirming that they got the message and are working on your behalf. Be sure to leave a call-back number if they don’t ask for one.

Richard “Red” Lawhern, PhD, has for over 20 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 100 papers and articles published in medical journals and mass media.

Rare Disease Spotlight: X-Linked Hypophosphatemia

By Barby Ingle, PNN Columnist  

Coming off a successful Rare Disease Awareness worldwide campaign in February, I decided to go with X-Linked Hypophosphatemia (XLH) for my rare disease spotlight this month.

I do know a little about this disease, having a friend from childhood that lived with a form of it. Back then, it was known as rickets, a softening and weakening of the bones in children. I also served on a patient advisory board a few years ago for a company that created the only FDA-approved treatment for XLH.

Rickets is caused by Vitamin D deficiency, while XLH is caused by a genetic mutation that causes the body to lose phosphorous, an important ingredient for bone health. XLH cannot be cured, but its progression can be slowed with phosphate, Vitamin D and calcium supplementation.

Like rickets, XLH can cause bone deformities. Being bow-legged is the most recognizable symptom, giving providers a visible clue as to which rare disease to test for when they are uncertain. About 1 in 20,000 people carry the genetic mutation that causes XLH.   

The symptoms for XLH vary for each patient, just as they do for other conditions. The most common ones include osteoarthritis, poor bone health, bone pain, low bone density, bones that easily fracture, short stature, bow-leggedness, major tooth abscesses, large dental pulp, tinnitus, waddling gait, muscle pain and body weakness.

As I mentioned, there is only one approved medication for this disease. The drug Crysvita (burosumab) helps normalize phosphate levels and is indicated for the treatment of XLH in adults and children 6 months of age and older.

The severe bow-leggedness caused by XLH can be treated with surgery to correct and reshape the legs. For less severe cases, phosphate supplements and growth hormones can help strengthen bones. Corrective dental treatments can also help with tooth abscesses and dental pulp issues.

If you’d like to learn more about XLH, there are a few sites that I have found helpful. These include the XLH Network, a nonprofit support group, and the National Institutes of Health’s Rare Diseases Information Center. You can also get information about XLH by visiting the website for Ultragenyx, the company that makes Crysvita.

I really like this video of a family affected by XLH. The children do a great job sharing their story.

When I was growing up, we did not have as much knowledge or awareness about rare diseases as we do now. We expected people with rare conditions back then to get by with little to no assistance. Today we know more and have more treatments, but we still have a long way to go.

I know what it meant to my young friend to get support when we knew far less about XLH. She was able to live a full life, attend school, and participated in gymnastics and cheerleading with me. But she suffered more injuries than most kids, was made fun of for her bow legs, and endured daily physical pain.

I dedicate this rare disease spotlight to my friend.

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

How Should the CDC Opioid Guideline Be Changed?

By Pat Anson, PNN Editor

It was five years ago today – March 15, 2016 – that the Centers for Disease Control and Prevention released its controversial opioid guideline, which discourages doctors from prescribing opioids for chronic pain.   

“This guideline is intended to improve communication between clinicians and patients about the risks and benefits of opioid therapy for chronic pain, improve the safety and effectiveness of pain treatment, and reduce the risks associated with long-term opioid therapy, including opioid use disorder, overdose, and death,” the CDC said.

Although voluntary and only intended for primary care physicians, the guideline soon became the “standard of care” in the United States, with many states, doctors, insurers, pharmacies and regulators adopting its recommendations, such as limiting opioid doses to no more than 90 morphine milligram equivalents (MME) per day.

Soon after the guideline was released, the CDC was warned by its own consulting company that “some doctors are following these guidelines as strict law rather than recommendation, and these physicians have completely stopped prescribing opioids.” Over three hundred healthcare professionals also warned that forced opioid tapering was causing “an alarming increase in reports of patient suffering and suicides.”

A PNN survey two years ago found that over 85 percent of patients believed the CDC guideline made their pain and quality of life worse, significantly reduced their access to pain care, and drove some to alcohol and illegal drugs for pain relief.

Not until 2019, however, did then CDC Director Robert Redfield acknowledge the guideline was causing problems and pledged to “clarify its recommendations to help reduce unintended harms.”

Two years later, the CDC is still in the process of revising and possibly expanding the guideline, with the goal of releasing an update for public comment late this year.

Should the guideline be changed? Has it been successful in improving pain treatment? Did it reduce addiction, overdose and death?

We thought this would be a good time to conduct another survey of patients and healthcare providers, to see what changes they’d recommend to the CDC and the “Opioid Workgroup,” a panel of experts that is advising the agency.

Among the questions we’re asking is whether the recommended dose limit of 90 MME/day should be scrapped; if the guideline should be expanded to include treatment of short-term acute pain; and whether the CDC should give advice on treating specific conditions, such as low back pain or fibromyalgia.

Click here to take the survey. It should only take a few minutes to complete. Your identity and any personal health information will be kept confidential.

Covid Long-Haulers Face New Battle for Disability Benefits

By David Tuller, Kaiser Health News

Rickie Andersen took a brief break from work last March after she fell ill. Her cough, fever and chills were typical covid-19 symptoms, but coronavirus tests were so scarce she could not obtain one to confirm the diagnosis.

After Andersen returned to her job as an information systems project manager in the San Francisco Bay Area, she struggled with profound fatigue, cognitive difficulties and other disabling complaints. For six months, she tried to keep awake during meetings and finish basic tasks that took much longer than before.

Finally, she decided to retain legal help so she could take advantage of the disability insurance coverage offered as an employee benefit. “I realized this is not going to be a short-term thing,” Andersen said.

Hundreds of thousands of people around the world are experiencing what is being called “long covid” — a pattern of prolonged symptoms following an acute bout of the disease. Many have managed to continue working through accommodations like telecommuting, cutting down on hours and delegating responsibilities.

Others have found it impossible to fulfill their professional obligations and are making the tough decision to stop working and seek disability benefits. But as they pursue the application process, they are discovering a particular set of challenges.

Given the lack of testing in the first months, many “long haulers,” like Andersen, have no laboratory proof of infection. While antibody tests can provide such evidence, their accuracy varies. Moreover, many of the reported symptoms, including fatigue and cognitive impairment, are subjective and not clearly linked to specific organ damage.

Beyond that, compiling a thorough record for a disability application and navigating the bureaucratic hurdles require sustained brain power, something many long-haul patients can no longer muster.

Barbara Comerford, a New Jersey disability lawyer, said she received dozens of inquiries starting last fall from long haulers seeking advice on filing for disability and often citing what is being called “brain fog” as their main complaint.

“Most are people calling to say, ‘I thought I could do it. I can’t. My mind doesn’t function for more than really brief periods of time,’” Comerford said.

In the U.S., close to 30 million people have tested positive for the coronavirus, although many cases of infection are asymptomatic. What proportion might be affected by long-term illness isn’t known. Scientific understanding of the phenomenon is in its infancy.

In January, The Lancet reported that around three-quarters of more than 1,700 covid patients who had been hospitalized in Wuhan, China, reported at least one ongoing symptom six months later. More recently, investigators from the University of Washington reported in JAMA Network Open that around 30% of 177 patients who had tested positive for the coronavirus still reported symptoms when they were surveyed one to 10 months later.

Strict Criteria for Benefits

The Social Security Administration provides long-term disability to American workers who qualify under its strict criteria, but applicants often get turned down on the first try. A few states, including California and New York, provide short-term disability benefits, in some cases for up to a year.

Tens of millions of Americans also have private disability coverage, most often as part of their employment benefit packages.

The maximum currently available to an individual through the Social Security Disability Insurance program is just over $3,000 a month. A typical private long-term disability plan might cover 60% of a beneficiary’s base salary, with a much higher maximum amount.

Sandy Lewis, a pharmaceutical industry researcher, fell ill last March with what she assumed was covid. She recovered but relapsed in April and again in May.

Through her employer-based insurance coverage, she received short-term disability for November and December, but the insurer, Prudential Financial, rejected her request for an extension. Soon after, she was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, a debilitating illness that can be triggered by viral infections.

Lewis, who lives outside Philadelphia, is planning to appeal Prudential’s rejection of the short-term extension and apply for long-term disability. But the matter is unlikely to be resolved before fall. The situation has left her feeling “devastated,” she said, and in serious financial distress.

“This has been such an arduous journey,” she said. “I have no income and I’m sick, and I’m continuing to need medical care. I am now in a position, at 49 years old, that I may have to sell my home during a pandemic and move in with family to stay afloat.”

In Lewis’ case, a Prudential reviewer noted that her symptoms were “subjective” and that there were “no physical exam findings to correlate with any ongoing functional limitations,” according to Cassie Springer Ayeni, an Oakland disability lawyer who is representing her as well as Andersen.

Prudential would not comment on a specific case. Evan Scarponi, chief claims officer, said in a statement that “our collective understanding of covid-19 and any associated long-term effects are still evolving” but that Prudential is “well-versed in evaluating both subjective and objective aspects of disability claims.”

Lawyers and advocates in the field expect the numbers of covid-related long-term disability applicants to rise this year. But it’s still too soon to detect any such increase, said a spokesperson for the American Council of Life Insurers, a trade association. Workers typically must be unable to work for half a year before becoming eligible for long-term disability benefits, and applying can itself be a lengthy process.

‘No Objective Evidence’

Brian Vastag, a former Washington Post science and health reporter with ME/CFS, stopped working in 2014 and then sued Prudential after it rejected his long-term disability claim. Insurance companies, he said, can easily find reasons to dismiss applications from claimants with chronic illnesses characterized by symptoms like fatigue and cognitive impairment.

“The insurance companies will often say, ‘There’s no objective evidence, so we have nothing to support your claim,’” said Vastag, who won his case against Prudential in 2018. “I’m worried about the long-covid patients who can’t work anymore.”

Claimants can appeal a rejection. If the insurer rejects the appeal, claimants have the right to sue, as Vastag did. However, most such cases fall under the Employee Retirement Income Security Act of 1974. Because this federal law requires a losing insurer to pay the unpaid claims but does not provide for punitive or compensatory damages, critics argue it incentivizes the denial of coverage.

In the event of litigation, the court’s role is to assess the already existing evidentiary record. That means it is essential to present a robust case in the initial application or during the administrative appeal before any litigation begins, said Ayeni, the disability lawyer for Andersen and Lewis.

“It’s the only shot to build a record for the courts, to develop a full body of evidence,” she said.

However, a successful disability case ultimately depends on documenting inability to work, not on obtaining a specific diagnosis. To augment the medical evidence, Ayeni often sends clients for neuropsychological testing, investigations of lung function and other specialist assessments. She also gathers affidavits from family members, professional colleagues and friends to confirm patients’ accounts.

In Rickie Andersen’s case, the strategy worked. Recognizing how complicated the application process was likely to be, she sought legal help early on. The insurer contracted by her employer approved her for short-term benefits late last year and granted her application for long-term benefits in February.

“I knew all of it was completely exhausting, so it wasn’t something I thought I could do on my own,” Andersen said.

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

New Advocacy Group Seeks Smarter Solutions to Pain Crisis

By Pat Anson, PNN Editor

If you’re like me, you are puzzled at times by the sheer number of patient advocacy groups working on behalf of pain sufferers. There are dozens and they all have the same goals: improve the quality of pain care and give patients a voice in a society that seems to have turned its back on them.  

Most of these groups are primarily run by one or two people, have little to no funding, no board of directors, no mission statement and no website. What they lack in money and organization, they make up for in passion and personality driven posts on Facebook, Twitter and other social media, sometimes attracting thousands of followers.

But all too often, the online discourse turns into endless bickering between advocates that accomplishes little for the pain community. Tired of the infighting, some advocates stop advocating and drift away.

A new patient advocacy group was launched this week that is trying to change that. The National Pain Advocacy Center (NPAC) is a 501(c)(3) non-profit led by Kate Nicholson, a pain sufferer and civil rights attorney, who emerged as a patient advocate in 2017 with an inspirational TedTalk that explained how opioids helped her walk again after a botched surgery.  

KATE NICHOLSON

Nicholson has been working publicly – and quietly behind the scenes -- ever since, meeting with legislators, healthcare providers, academics, civil rights advocates, and people with pain. NPAC is an outgrowth of the many connections she has made.

“There are people I have worked with over the last few years on select projects. And I think we all felt we had sort of reached our capacity to work as individual actors. We needed to make a change and come together,” Nicholson explained.

“We needed to advocate more broadly for better treatment for pain. Because even though we were able to stop a bad policy here or there, it was a little like whack-a-mole. They just keep coming back. We needed a broader reach.”

NPAC has a large and diverse group of volunteers on its board of directors and advisory councils; including some familiar names in patient advocacy, such as Laura Mills, Leo Beletsky, Stefan Kertesz, Sally Satel, Anne Fuqua, Jennifer Oliva, Chris Freeman and Sean Mackey, to name just a few.

The advisory councils are so inclusive they include several people who have struggled with substance abuse or work in addiction treatment – which might get some push back from others in the pain community. Nicholson says both pain and addiction need to be addressed if NPAC is to be seen as a credible organization.

“Anytime you meet with policy makers, these two issues have become intertwined in the public conversation because of the way the story about opioids has been told,” she told PNN. “I’m not one of those people who think that no one got hurt because of liberal prescribing. There are people who are susceptible to addiction. I see it as two very stigmatized groups who need to band together to some extent because right now the infighting is causing everyone to go down, really.”

NPAC has gotten some grant money from the Open Society Foundation, another association likely to be questioned because it is funded by liberal philanthropist George Soros, a billionaire who is a magnet for right-wing conspiracy theories.

Nicholson has pledged to never to accept funding from pharmaceutical companies or other organizations that may create a conflict of interest – real or imagined -- with NPAC’s mission.

“Our goal is to change minds and shift policies,” says Nicholson, who serves on a panel advising the CDC as it makes revisions to its controversial 2016 opioid guideline. She says the current state of research and understanding of pain is in “the Dark Ages.”

“My own feeling is that pain needs rebranding. If we really think chronic pain is a disease, then shouldn’t we be calling it something different? We don’t call depression ‘chronic sadness’ even though everybody feels sad,” Nicholson said. “I really feel like there needs to be a shift in how we talk about pain and how we understand it. There really needs to be a much bigger conversation than just one treatment modality.”

Experimental Gene Therapy May Relieve Chronic Pain

By Pat Anson, PNN Editor

A new study by researchers at the University of California San Diego suggests that gene therapy could someday be used to treat a variety of chronic pain conditions without the use of drugs.

In experiments on laboratory mice, researchers found that temporarily repressing a gene involved in sensing pain increases pain tolerance, lowers pain sensitivity and provided months of pain relief without causing numbness. Their findings were published in the journal Science Translational Medicine.

“What we have right now does not work,” said first author Ana Moreno, PhD, CEO of Navega Therapeutics, which is developing gene therapies to treat chronic pain. “There’s a desperate need for a treatment that’s effective, long-lasting and non-addictive.”

Moreno was grad student at UC San Diego studying gene repression when she came across a paper about a genetic mutation that causes humans to feel no pain. The mutation blocks a protein -- called NaV1.7 -- that’s involved in transmitting pain signals in the spinal cord.

That’s when she came up with the idea of suppressing the gene using the CRISPR gene editing tool. Moreno was working with a version of CRISPR that uses what’s called “dead” Cas9, which lacks the ability to permanently cut DNA. Instead, it sticks to a gene and temporarily blocks its expression.

“By targeting this gene, we could alter the pain phenotype,” Moreno explained. “It’s not cutting out any genes, so there are no permanent changes to the genome. You wouldn’t want to permanently lose the ability to feel pain.

“One of the biggest concerns with CRISPR gene editing is off-target effects. Once you cut DNA, that’s it. You can’t go back. With dead Cas9, we’re not doing something irreversible.”

Moreno and UC San Diego bioengineering professor Prashant Mali, PhD, co-founded Navega Therapeutics to work on developing gene therapy as a treatment for pain.  They teamed up with Tony Yaksh, PhD, a professor of anesthesiology and pharmacology at UC San Diego School of Medicine, and developed a CRISPR/dead Cas9 system to target and repress the gene that codes for NaV1.7.

When they administered spinal injections of the system into laboratory mice with inflammatory and chemotherapy-induced pain, the mice displayed higher pain thresholds than mice that did not receive the gene therapy. The treated mice were slower to withdraw a paw from painful stimuli (heat, cold or pressure) and spent less time licking or shaking their paws after being hurt.

The treatment was still effective after 44 weeks in the mice with inflammatory pain and 15 weeks in those with chemotherapy pain. The treated mice did not lose sensitivity or display any changes in normal motor function.

To validate their results, the researchers performed the same tests using another gene editing tool called zinc finger proteins. It’s an older technique than CRISPR, but works the same way. Spinal injections of the zinc fingers into mice produced the same results as the CRISPR-dead Cas9 system.

“We were excited that both approaches worked,” Mali said. “The beauty about zinc finger proteins is that they are built on the scaffold of a human protein. The CRISPR system is a foreign protein that comes from bacteria, so it could cause an immune response. That’s why we explored zinc fingers as well, so we have an option that might be more translatable to the clinic.”

The researchers say this solution could work for a variety of chronic pain conditions, including diabetic neuropathy, sciatica, and chemotherapy pain. They believe their gene therapy platform could also be used to treat short-term acute pain.

“Think of the young athlete or wounded war fighter in which the pain may resolve with wound healing,” Mali explained. “We would not want to permanently remove the ability to sense pain in these people, especially if they have a long-life expectancy. This CRISPR/dead Cas9 approach offers this population an alternative therapeutic intervention—that’s a major step in the field of pain management.”  

Researchers at UC San Diego and Navega are planning further studies of pain-relieving gene therapy on non-human primates. Their goal is to begin human clinical trials in a couple years. Their work is funded by UC San Diego Institutional Funds and the National Institutes of Health.

A Tough Pill to Swallow

By Mia Maysack, PNN Columnist

Nothing will change if we don't demand it. So many of us are exhausted, fed up, disheartened and tempted to call it quits. But our lives are worth fighting for, as is the quality of them. 

I have a loved one who was prescribed multiple different medications for years to aid with pain, anxiety, depression and sleep disturbance. Though these medicines were taken as directed, they altered this person's brain chemistry and cultivated a physical dependence -- which isn't something that was ever mentioned to them by a medical professional as a possibility or concern. 

No longer willing to compromise with the adverse side effects, they began researching how to appropriately and safely wean themselves off these pills -- only to find out that many others who tried to were either unable to quit or lost their lives attempting to do so. 

Although it was never recommended or suggested, my loved one chose to stop cold turkey overnight, a decision they almost didn't make it through. But their determination to reclaim a normal existence exceeded the potential dangers. 

This left me with major concerns. Why were these capsules doled out for such a long period of time without a mention, thought, discussion or intervention of other therapies?  Generally, our bodies are not built or equipped to internalize anything foreign for so long, let alone forever.

What is my loved one to do now? Where could they turn? And who was going to help them?

It shouldn't be a newsflash that there's an on-going war against patients, specifically in relation to untreated pain and/or opioid use. But there are some things not everyone may realize, such as the major differences between the abuse of prescriptions, addiction and following provider instructions. Yet all three have ignorantly been grouped together.

To add further insult to injury, it's those who cannot begin relating to any of these circumstances who usually have the opinions and power to manage them. That’s similar to how I, as a white woman, cannot begin to fully understand the experiences of other ethnicities.

The same principle applies to someone who has never encountered intractable, unbearable, relentless and agonizing discomfort. It makes no sense as to how it is justified. The lack of firsthand knowledge disqualifies anyone to judge or make decisions on behalf of others directly impacted by something they cannot begin to relate to. It also boils down to a severe lack of humility.

All it would require is a shift in circumstance -- a fall, accident, surgery or unexpected diagnosis for a sudden complete change in stance on these matters.

When deaths are reported, they are often categorized under one “cause.” And when it is discovered that an individual who passed away was taking opioids, that is the box that usually gets checked. That not only unfairly minimizes respect for those we've lost, but also skews the data, painting an improper and inaccurate statistical picture to further victimize some of our most vulnerable.  

Instead of being given options and solutions, people who should be protected and served by the medical system have been and continue to be punished, while also neglected and their voices ignored.    

Fighting amongst each other by comparing our individual situations is not an adequate use of our energy. That same effort and passion would be better devoted toward contacting legislators and institutions falsely producing this hysteria, to express our dissatisfaction, demand acknowledgement and to create forward momentum in making things better.   

It isn’t acceptable to go from one extreme to another while not solving anything. This alters what the problem is, as opposed to offering an actual fix. How is it justified that the World Health Organization calls management of pain a “fundamental human right,” while millions are not only suffering but suicide rates are at an all-time high due to medical abandonment?   

Politics do not belong in the realm of healthcare. But when our integrity as “The People” is being compromised, this becomes an issue that impacts each and every one of us. If we do not fight for our virtues, we’ll lose our liberty.               

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

Low Dose Naltrexone Emerging as Treatment for Intractable Pain

By Forest Tennant, PNN Columnist

A major advance in pain management is the discovery of low-dose naltrexone (LDN), a non-opioid medication used to treat substance abuse. When prescribed off-label, LDN not only relieves pain, but has anti-inflammatory and immune boosting properties on brain and spinal cord tissues. It is now the preferred, first drug of choice for people living with constant, intractable pain.

Only those persons who are not currently on daily opioids should take LDN. A major purpose of LDN is to prevent the necessity of daily opioids, including buprenorphine/Suboxone.

A starting dosage of LDN is usually 0.5 – 1.0 milligrams taken twice a day. The average maintenance dose is about 3 – 5mg given twice a day. The maximum dose is about 7mg taken twice a day.

LDN should ideally be a part of a multi-drug program. A nerve conduction blocker (neuropathic) agent such as gabapentin or diazepam will almost always boost pain relief. A dopamine surrogate such as Adderall, Ritalin or mucuna, is also very helpful.  Routinely recommended are standard anti-inflammatory (e.g., Ketorolac) and tissue healing anabolic agents (e.g., DHEA).

A pain flare medication should also be handy and ready. Some patients taking LDN can occasionally take a low dose of tramadol, codeine or hydrocodone for pain flares. Other flare medications include ketamine, CBD, medical marijuana, ibuprofen (800mg), oxytocin, kratom and ketorolac.

Caution and Warning

Persons who currently take daily opioids must withdraw from opioids before starting LDN. In our studies, patients sometimes became deathly ill if they took LDN while still on opioids. Severe withdrawal may set in, pain relief will diminish and, at worst, a cardiac-adrenal crisis may be precipitated.

If one has Intractable Pain Syndrome and is currently on a regimen including opioids that satisfactorily reduces pain, there is no medical reason to switch to LDN.

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

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

VALUE Study Seeks Patient Perspective on Long-Term Opioid Use

By Pat Anson, PNN Editor

In 2011, the Institute of Medicine released its landmark report, “Relieving Pain in America,” an ambitious project aimed at improving pain care, education and research in United States.

One of the report’s co-authors was Stanford University’s Dr. Sean Mackey, who remembers telling colleagues at the time that more research was needed on the long-term use of opioid pain relievers.     

“One of the questions I put forward to the group was, ‘One of the biggest questions that we need to answer is do opioids help relieve chronic pain for some people?’ Do they actually work? And if so, for whom do they work?” Mackey recalls.

“And surprisingly, ten years later, here we are in 2021 and I would submit to you that we still don’t know the answer to that question. We still do not know how well long-term prescribing of opioids work for chronic pain and for which person they work for. We understand much better who they don’t work for. But we don’t know the flip side.”

Mackey is now leading a study aimed at finally answering the question. The VALUE study is designed to give patients a voice in determining whether opioids can be a safe, effective and long-term treatment for chronic pain.

Mackey and co-investigator Beth Darnall, PhD, along with a team of patient advocates, hope to get up to 500 chronic pain sufferers to enroll in their year-long study. Patients will be asked to participate in three online surveys and three phone calls, answering questions about their pain, symptoms, mood, sleep, quality of life, and whether they encountered any problems or stigma from using opioids.

Long-Term Studies Lacking

Many doctors, regulators and opioid critics claim – disingenuously – that there is no evidence supporting the long-term use of opioids. But the truth is the same could be said for all pain relievers, including non-opioids. Few placebo-controlled studies have been conducted on the long-term use of any pain medication -- simply because it would be unethical to subject a participant to untreated pain for a lengthy period.

That leaves it to patients to share their own experiences with opioids, and a shrinking pool of doctors like Mackey who are not afraid to prescribe them.

“In my caring for people who suffer from pain and for whom it takes a big toll, I have clearly seen a subset of people for whom they do work,” Mackey told PNN. “What we’re trying to do here is transcend what has become a one-size-fits-all approach to patient treatment and the issue of opioids. We’ve become rather guideline-based and we treat all people as if they were an average in a clinical trial. I don’t treat averages. I treat people.

“Everybody is unique and deserves to be treated as an individual. That doesn’t mean that we can’t be guided by those research studies and averages, but we need to get at a more personalized approach. We need to recognize, at least in many of our experiences, there are sub-groups of people who respond to opioids. The problem is we don’t have good data on who they are.”

People who volunteer for the VALUE study should be prepared to spend a fair amount of time answering questions. Each survey will take about 45 minutes to complete. Participants will complete the first survey when they enroll, the second one after 6 months, and the third survey after one year. For each completed survey, patients will be compensated with an Amazon or gift card.

All information collected will be confidential, and won’t be shared with doctors, regulators or insurers. Participants can even use a pseudonym if they don’t feel comfortable using their real names. The VALUE study website has a list of other frequently asked questions.

People interested in participating should contact study coordinator Hannah Cunningham by email at hcunning@stanford.edu or by calling 1-833-668-0277.

“We believe our findings will have broad policy indications at local, state and national levels that will hopefully make opioid prescribing guidelines more patient centered, more effective and safer,” says Mackey.

Study Finds Placebos Disrupt Pain Signals in Brain

By Pat Anson, PNN Editor

Much of the pain relief that a person gets from taking an analgesic medication is due to individual mindset, not the drug itself, according to new research that looks at how the human brain responds to a placebo.

The placebo effect is a well-documented but poorly understood condition in which a patient responds to a drug or treatment that is designed to have no therapeutic value. A 2018 study, for example, found that about half of patients who took a sugar pill they thought was an analgesic had a 30% reduction in pain – a level considered effective for an actual painkiller.    

To better understand how that is possible, researchers at Dartmouth University conducted a meta-analysis of 20 neuroimaging studies involving 603 healthy people who participated in placebo studies. Their findings, recently published in Nature Communications, showed that placebo treatments reduced pain-related activity in multiple areas of the brain.

"Our findings demonstrate that the participants who showed the most pain reduction with the placebo also showed the largest reductions in brain areas associated with pain construction," explains co-author Tor Wager, PhD, a Neuroscience Professor who is principal investigator of the Cognitive and Affective Neuroscience Lab at Dartmouth.

"We are still learning how the brain constructs pain experiences, but we know it's a mix of brain areas that process input from the body and those involved in motivation and decision-making. Placebo treatment reduced activity in areas involved in early pain signaling from the body, as well as motivational circuits not tied specifically to pain."

By examining brain images, researchers were able to identify the placebo effect in regions of the brain that process pain signals (nociception) and generate pain sensations.

They found that placebos strongly affect the thalamus, which processes sights, sounds and other types of sensory input; as well as the basal ganglia, which is important for motivation and pain-related activities.

Placebo treatments also reduced activity in the brain’s posterior insula, which is one of the areas involved in creating pain sensations. This suggests that placebos change the pathway for how pain is processed in the brain. 

"The placebo can affect what you do with the pain and how it motivates you, which could be a larger part of what's happening here," says Wager. "It's changing the circuitry that's important for motivation."

Previous research has found that placebos activate the brain’s prefrontal cortex, which triggers the release of natural, pain-relieving hormones that can block pain signals from being processed.

Researchers say placebo effects likely involve a combination of different brain reactions, depending on the placebo and people's predispositions. In other words, there is no uniformity in the placebo response because everyone is different.

"Our results suggest that placebo effects are not restricted solely to either sensory/nociceptive or cognitive/affective processes, but likely involves a combination of mechanisms that may differ depending on the placebo paradigm and other individual factors," said co-author Ulrike Bingel, PhD, a professor at the Center for Translational Neuro- and Behavioral Sciences at University Hospital Essen.

A 2016 study that looked at brain images of osteoarthritis patients found that about half had mid-frontal brain regions that had more connectivity with other parts of the brain, making them more likely to respond to the placebo effect. That could help could explain why some respond well to pain medication, while others do not.

How Long Haul Covid Alters the Immune System

By Liz Szabo, Kaiser Health News

There’s a reason soldiers go through basic training before heading into combat: Without careful instruction, green recruits armed with powerful weapons could be as dangerous to one another as to the enemy.

The immune system works much the same way. Immune cells, which protect the body from infections, need to be “educated” to recognize bad guys — and to hold their fire around civilians.

In some Covid-19 patients, this education may be cut short. Scientists say unprepared immune cells appear to be responding to the coronavirus with a devastating release of chemicals, inflicting damage that may endure long after the threat has been eliminated.

“If you have a brand-new virus and the virus is winning, the immune system may go into an ‘all hands on deck’ response,” said Dr. Nina Luning Prak, co-author of a January study on Covid and the immune system. “Things that are normally kept in close check are relaxed. The body may say, ‘Who cares? Give me all you’ve got.’”

While all viruses find ways to evade the body’s defenses, a growing field of research suggests that the coronavirus unhinges the immune system more profoundly than previously realized.

Some Covid survivors have developed serious autoimmune diseases, which occur when an overactive immune system attacks the patient, rather than the virus. Doctors in Italy first noticed a pattern in March 2020, when several Covid patients developed Guillain-Barré syndrome, in which the immune systems attacks nerves throughout the body, causing muscle weakness or paralysis.

As the pandemic has surged around the world, doctors have diagnosed patients with rare, immune-related bleeding disorders. Other patients have developed the opposite problem, suffering blood clots that can lead to stroke.

All these conditions can be triggered by “autoantibodies” — rogue antibodies that target the patient’s own proteins and cells. In a report published in October, researchers even labeled the coronavirus “the autoimmune virus.”

Although doctors are researching ways to overcome immune disorders in Covid patients, new treatments will take time to develop. Scientists are still trying to understand why some immune cells become hyperactive — and why some refuse to stand down when the battle is over.

Key immune players called “helper T cells” typically help antibodies mature. If the body is invaded by a pathogen, however, these T cells can switch jobs to hunt down viruses, acting more like “killer T cells,” which destroy infected cells. When an infection is over, helper T cells usually go back to their old jobs.

In some people with severe Covid, however, helper T cells don’t stand down when the infection is over, said James Heath, a professor and president of Seattle’s Institute for Systems Biology.

About 10% to 15% of hospitalized Covid patients Heath studied had high levels of these helper T cells, which were still looking for the enemy long after it had been eliminated. He’s now studying whether these overzealous T cells might inflict damage that leads to chronic illness or symptoms of autoimmune disease.

“These T cells are still there months later and they’re aggressive,” Heath said. “They’re on the hunt.”

Friendly Fire

Covid appears to confuse multiple parts of the immune system. In some patients, Covid triggers autoantibodies that target the immune system itself, leaving patients without a key defense against the coronavirus.

In October, a study published in Science led by Rockefeller University’s Jean-Laurent Casanova showed that about 10% of Covid patients become severely ill because they have antibodies against an immune system protein called interferon.

Disabling interferon is like knocking down a castle’s gate. Without these essential proteins, invading viruses can overwhelm the body and multiply wildly.

New research shows that the coronavirus may activate preexisting autoantibodies, as well as prompt the body to make new ones. In the January study, half of the hospitalized Covid patients had autoantibodies, compared with fewer than 15% of healthy people.

Other research has produced similar findings. In a study out in December, researchers found that hospitalized Covid patients harbored a diverse array of autoantibodies.

While some patients studied had antibodies against virus-fighting interferons, others had antibodies that targeted the brain, thyroid, blood vessels, central nervous system, platelets, kidneys, heart and liver, said Dr. Aaron Ring, assistant professor of immunology at Yale School of Medicine.

Similarities With Lupus

Some patients had antibodies associated with lupus, a chronic autoimmune disorder that can cause pain and inflammation in any part of the body. Covid patients rife with autoantibodies tended to have the severest disease, said Ring, who was surprised at the level of autoantibodies in some patients.

“They were comparable or even worse than lupus,” Ring said.

Researchers would like to know if lingering autoantibodies contribute to the symptoms of “long Covid,” which afflicts one-third of covid survivors up to nine months after infection, according to a new study in JAMA Network Open.

“Long haulers” suffer from a wide range of symptoms, including debilitating fatigue, shortness of breath, cough, chest pain and joint pain. Other patients experience depression, muscle pain, headaches, intermittent fevers, heart palpitations and problems with concentration and memory, known as brain fog.

Less commonly, some patients develop an inflammation of the heart muscle, abnormalities in their lung function, kidney issues, rashes, hair loss, smell and taste problems, sleep issues and anxiety.

The National Institutes of Health has announced a four-year initiative to better understand long Covid, using $1.15 billion allocated by Congress.

Ring said he’d like to study patients over time to see if specific symptoms might be explained by lingering autoantibodies.

“We need to look at the same patients a half-year later and see which antibodies they do or don’t have,” he said. If autoantibodies are to blame for long Covid, they could “represent an unfortunate legacy after the virus is gone.”

Kaiser Health News is a nonprofit news service covering health issues. It is not affiliated with Kaiser Permanente.

Is Recreational Drug Use a Human Right?

By Roger Chriss, PNN Columnist

The book “Drug Use for Grown-Ups” by Carl Hart, PhD, is garnering a lot of attention. Hart argues that recreational drug use is a fundamental human right, while also describing the harms of drug laws and policy on people of color. His book is a mixture of anecdote and analysis that raises a lot of important issues about drugs and society.

Hart is unapologetic about his own drug use and that of others, saying that "Adults should be permitted the legal right to sell, purchase, and use recreational drugs of their choice." He sees drug use as “beneficial for human health and functioning” and causing ‘little or no harm” in most instances.

Specifically, Hart states that drug use is an "act that the government is obliged to safeguard” because it is a part of the “pursuit of happiness” in the Declaration of Independence. He claims that Thomas Jefferson, one of the authors of the Declaration, was “a long-term avid drug user.”

Hart, who is a psychology professor at Columbia University, raises numerous questions in a blunt and sometimes brusque fashion, asking “Why is it that guns can be legally purchased but heroin cannot?”

He challenges his readers with remarks like: “Few would balk at using Viagra or Cialis to enhance sexual performance, but many more find it objectionable to use drugs such as amphetamines to improve the sexual experience.”

Hart doesn't mythologize or romanticize drugs or their users, and questions why advocates of the psychedelic movement call themselves “psychonauts.”

“The term psychonaut in itself is another attempt to dissociate middle-class psychedelic users from users of drugs such as crack and heroin, who are disapprovingly called ‘crackheads’ or ‘dope fiends’.”

Hart defends this position by pointing out that nearly 80 percent of illicit drug users don’t have problems such as addiction. He explains that his own heroin use is rational: “Like vacation, sex, and the arts, heroin is one of the tools that I use to maintain my work-life balance.”

As for overdose deaths, Hart contends that contaminated drugs are the issue. “A regulated market, with uniform quality standards, would virtually put an end to contaminated drug consumption and greatly reduce fatal, accidental overdoses,” he writes.

Further, Hart states that drug addiction is not a brain disease, writing that there is no evidence indicating that “responsible recreational drug use” causes brain abnormalities. He says obsessing over addiction has caused harm by stigmatizing drug users as unworthy of social support or rehabilitative care. Hart sees the opioid crisis as overblown and rooted in racism.

“All the evidence from research clearly shows that most heroin users are people who use the drug without problems, such as addiction; they are conscientious and upstanding citizens,” he writes. “The new ‘get tough on opioids’ policies have been fueled by the mistaken perception that most illegal opioid dealers are black or Latino.”

Legalization, Hart claims, is the key to changing all this. Prohibition of alcohol gave birth to criminal gangs and a thriving underground market in booze, some of it so contaminated with impurities it made people sick or even killed them. “This problem went away when Prohibition was repealed,” he points out.

But not all of this holds up so well. Hart argues that a legalized market with regulated substances would keep people safe, but he himself chooses to use an illicit substance called “hex” of unknown provenance and effect while at a drug festival.

“I now include hex among the drugs I might want to take immediately before attending some awful required social event, such as an academic reception or an annual departmental holiday party,” he wrote.

Hart’s book is also notable for what it lacks. He doesn’t look at public health data or long-term studies on drug risks and user outcomes in the U.S. or other countries, and ignores animal research on drug risks and harms.

Hart also omits recent discouraging research on drug legalization and social justice. According to the University of Washington’s Alcohol & Drug Abuse Institute, legalization of cannabis has had no impact on reducing racial bias in policing and other disparities in the criminal justice system.   

He also doesn’t discuss the under-treatment of pain in people of color due to myths about higher pain tolerance, lack of nerve endings, or greater abuse and addiction risk.

Hart clearly shows the harms of current drug policy, but arguably overstates the potential benefits of legalization. And his blunt style sometimes diminishes his own credibility.  Overall, the book “Drug Use for Grown-Ups” adds to the discussion of drug policy in the U.S. by asking some challenging questions, but doesn’t resolve many important issues.

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

“Drug Use for Grown-Ups” is featured in PNN’s Suggested Reading section, along with other books on pain treatment and drug policy.