Migraine and Arthritis Patients Report More Pain During Pandemic

By Pat Anson, PNN Editor

Two new surveys are opening a window into how migraine and arthritis patients are managing their pain and getting treatment during the coronavirus pandemic. Many remain fearful about visiting a provider and want insurers to make access to medication easier.

The first survey, conducted by the Headache & Migraine Policy Forum, found a significant increase in stress and migraine attacks in over 1,000 U.S. migraine patients who were surveyed over the summer.

Asked how COVID-19 had impacted their health and treatment, over two-thirds (69%) of patients said they were experiencing an increase in monthly migraines. Eight out of ten (84%) said they felt more stress managing their disease (84%) and over half (57%) said their overall health had worsened.

“Treating a debilitating condition like migraine disease during a global pandemic can increase stress for patients, many of whom already struggle with day-to-day activities. Added stress can mean more frequent attacks, resulting in more visits to see a health care provider or even costly ER visits,” the Policy Forum said.

But while the frequency of migraine attacks increased, many patients were reluctant about seeing a provider and potentially exposing themselves to COVID-19. Six out of ten (61%) said they were afraid to seek care at a doctor’s office or hospital, and 74% were hesitant to visit an emergency room when having an acute migraine attack.

Some insurers have relaxed rules about prior authorization and step therapy to make access to medication easier during the pandemic. But most migraine patients say their own insurers need to be more flexible.

• 72% had difficulty managing their migraine because they couldn’t get a longer supply of medication

• 73% said insurers did not allow them to get more medication per pharmacy fill

• 70% said insurers did not reduce barriers like prior authorization

• 76% said insurers did not stop requiring step therapy

While migraine patients were often unhappy with their insurers, most were delighted with telehealth. The vast majority (83%) said they hoped their providers continued using telehealth after the pandemic ends.

“COVID has introduced a host of new challenges for people living with migraine disease. Telemedicine clearly provides an important link to care, but patients are looking for insurance providers to do more to facilitate care, including cutting red tape and ending delay tactics,” Lindsay Videnieks, Executive Director of the Headache & Migraine Policy Forum said in a statement.

Arthritis Patients Want New Treatments

The second survey of nearly 2,000 adults suffering from osteoarthritis had similar findings. Over a third of respondents (37%) told the Arthritis Foundation that they had missed or cancelled a doctor’s appointment due to fear of COVID-19 infection. Only 15% said their osteoarthritis is well managed.

Osteoarthritis (OA) is a joint disorder that leads to thinning of cartilage and progressive joint damage. No disease-modifying drugs are currently available to treat OA, and over the counter pain relievers have only mild to moderate effects on OA pain.

"Pain is debilitating. My back and hip pain are so bad that I have trouble getting out of bed," said one survey respondent. "Each step is excruciating, and I wonder how much longer I can deal with the pain."

"You spend a lot of time & effort trying not to think about it because what you focus on magnifies," another patient wrote. "You hate pain scales because how do you rate something that is always there? Oftentimes it's not the pain's intensity but rather the duration."

Nearly two-thirds (65%) of patients said they use non-steroidal anti-inflammatory drugs (NSAIDs) or topical medication to manage their pain, 29% use physical therapy or massage, and another 29% said total joint replacement helped.

The primary change OA patients want is for insurers to increase coverage of new arthritis treatments, though more than half said they were only interested in a new treatment for pain if it didn't also increase their joint damage.

The Arthritis Foundation recently joined with 30 other healthcare organizations in asking the Food and Drug Administration and National Institutes of Health to make the development and availability of pain treatments a higher priority within the agencies.

Reduced Drinking Can Improve Pain Symptoms

By Pat Anson, PNN Editor

It’s no secret that alcohol consumption has risen sharply during the coronavirus pandemic, as more people are drinking to cope with anxiety, loneliness, stress and boredom. According to recent research published in JAMA Network Open, alcohol sales rose 54% in the first weeks of the pandemic, and there was a significant increase in heavy drinking among women.

Excessive alcohol use may worsen mental and physical health problems, and it is particularly problematic for people with chronic pain, who are often prescribed medications that shouldn’t be taken with alcohol.

Another reason to reduce drinking is that it could improve your pain symptoms, according to a recent study of U.S. military veterans published in Alcoholism: Clinical and Experimental Research. The study followed about 7,000 veterans who took annual surveys between 2003 and 2015 that included questions about their mental health and alcohol and substance use.

Researchers identified about 1,500 veterans who reported heavy drinking in at least one survey, and then compared those who reduced their alcohol consumption to those who did not.

The veterans who reduced their drinking were more likely to have improved pain symptoms two years later, and had higher odds of stopping smoking, cannabis, or cocaine use. There was no noticeable improvement in their depression and anxiety.

“We found some evidence for improvement of pain interference symptoms and substance use after reducing drinking among US veterans with unhealthy alcohol use, but confidence intervals were wide,” wrote lead researcher Ellen Caniglia, an epidemiologist in the NYU School of Medicine in New York City.

Caniglia and her colleagues noted that the timing of alcohol reduction relative to improvement in pain and other conditions was often unknown, so it cannot be concluded that less drinking caused the improvement or vice versa.

The veterans included in the study were not representative of the overall population; nearly half had moderate to severe chronic pain, more than half had anxiety, a third had depression, and half were HIV-positive. More than two-thirds were tobacco smokers, a third reported cannabis use, and another third reported cocaine use.

That said, researchers say their findings support efforts to reduce drinking in veterans with unhealthy alcohol use, and suggest that reduced drinking is unlikely to worsen pain symptoms or increase the abuse of other substances.

Some previous studies have found that moderate alcohol consumption may actually improve pain symptoms. A 2015 survey of over 2,200 people with fibromyalgia and other chronic pain conditions found that drinkers reported significantly less disability than teetotalers.

And a 2017 analysis published in the Journal of Pain found “robust evidence” that a few drinks can produce a “moderate to large reduction in pain intensity.”

How much is too much? According to the Mayo Clinic, moderate alcohol consumption for healthy adults means one drink a day for women of all ages and men older than age 65, and two drinks a day for men age 65 and younger.

Great Progress Being Made in Treating Arachnoiditis

By Dr. Forest Tennant, PNN Columnist

About 5 years ago, most medical practitioners had either never heard of Adhesive Arachnoiditis (AA) or thought it was a spider bite. Today, almost all practitioners in the modern world have heard of AA. Many now understand it and some even treat it. A few are trying some innovative new approaches.

AA is a chronic inflammation that starts inside the spinal canal that can lead to severe suffering, neurologic impairments and a shortened lifespan. Once inflammation starts, it apparently never, or rarely, goes totally away.  

Treatment and prevention in recent years have greatly reduced the occurrence of some serious neurologic impairments and autoimmune complications of AA. The most obvious decrease in new cases reviewed by the Tennant Foundation are those of upper and lower extremity paraparesis (partial paralysis) and total paralysis, which are rapidly disappearing.

Urinary and bladder impairments that require catheterization are also hardly seen. And the autoimmune manifestations of arthritis, thyroid deficiency and carpal tunnel are disappearing.

Why the improvement? Awareness, thanks to patients, social media and advocates who have educated the medical profession about AA. Fewer epidurals, early treatment and emergency measures have all helped. The development of protocols for prevention, emergency intervention and on-going treatment have been essential.

Major Remaining Problems

Persons with AA are still having difficulty, in some communities, finding medical practitioners who are comfortable and willing to treat AA. The major complication is the development of constant pain and the intractable pain syndrome.

The key to preventing AA and stopping its progression is early treatment. Our research has clearly shown that AA is almost always preceded by one of 3 intraspinal canal inflammatory conditions:

1. Protruding, degenerated intravertebral discs.

2. Cauda equina inflammation.

3. Arachnoid inflammation (i.e. plain arachnoiditis) due to collagen disorders or needle injury.

Some intraspinal canal inflammatory disorders always precede AA. These disorders should be aggressively treated to prevent AA.

Select Corticosteroids Essential for AA

We believe all persons with typical AA symptoms and documentation of the disease on an MRI must take one of two corticosteroids (CS): methylprednisolone or dexamethasone for the spinal canal inflammation and pain of AA.

Currently there is no other medication agent that consistently and predictably suppresses intraspinal canal inflammation and reduces pain. Do not expect to halt progression or have much recovery if you do not consistently take a CS.

Dexamethasone and methylprednisolone are the preferred CS’s because they cross the blood brain barrier, enter spinal fluid and act on glial cells. Prednisone and hydrocortisone are not as consistently effective as dexamethasone and methylprednisolone, which should be taken in low doses.

1. Maintenance-low dose of dexamethasone (.5 to .75mg) or methylprednisolone (Medrol) 2 to 4 mg on 2 to 5 days a week. Skip days between dosages. An alternative is a weekly or bi-monthly injection of methylprednisolone or dexamethasone. Injections are usually the answer to corticoid sensitivity or gastric upset.

2. For flares, a 6-Day Medrol Dose Pak or an injection of methylprednisolone or dexamethasone, preferably mixed with a standard dose of injectable ketorolac.

The fear of corticosteroids comes from daily use of high doses, not from low, intermittent dosages. Some persons with severe asthma and rheumatoid arthritis must take a corticosteroid for years and don’t experience serious side effects.

Forest Tennant, MD, MPH, DrPH, is retired from clinical practice but continues his groundbreaking research on the treatment of intractable pain and arachnoiditis. This column is adapted from bulletins recently issued by the Arachnoiditis Research and Education Project of the Tennant Foundation. Readers interested in subscribing to Dr. Tennant’s bulletins should send an email to tennantfoundation92@gmail.com.

Dr. Tennant and the Tennant Foundation have given financial support to Pain News Network and are currently sponsoring PNN’s Patient Resources section.  

Can Herd Immunity End the Pandemic?

By Roger Chriss, PNN Columnist

The latest round in the ongoing public health debate over the pandemic pits two online petitions against each other: the "Great Barrington Declaration" versus the “John Snow Memorandum.” The former focuses on natural herd immunity, while the latter emphasizes controlling community spread through lockdowns, masks and other public health measures.

The Barrington Declaration has garnered support from the Trump administration because it calls for schools and businesses to reopen, and for life to return to normal for “those who are not vulnerable” to the virus.

“The most compassionate approach that balances the risks and benefits of reaching herd immunity, is to allow those who are at minimal risk of death to live their lives normally to build up immunity to the virus through natural infection, while better protecting those who are at highest risk. We call this Focused Protection,” the Declaration states.

The John Snow Memorandum, named for the famed British physician who halted the 1854 London cholera outbreak, states that "Any pandemic management strategy relying upon immunity from natural infections for COVID-19 is flawed. Uncontrolled transmission in younger people risks significant morbidity and mortality across the whole population."

The Declaration’s Fundamental Flaws

The Declaration claims that “all populations will eventually reach herd immunity – i.e. the point at which the rate of new infections is stable – and that this can be assisted by (but is not dependent upon) a vaccine.”

But we do not know this. Many diseases, from malaria to Ebola, continue to rip through populations without reaching herd immunity. It is entirely possible that Covid-19 will reach a similarly perilous “equilibrium,” becoming endemic until the arrival of a vaccine. At this point we don’t know enough about the coronavirus SARS-CoV-2 to make any strong claims that herd immunity will “eventually” happen.

Moreover, the “Focused Protection” championed in the declaration assumes that we have adequate testing, contact tracing and isolating to protect the vulnerable, though at present the U.S. does not. It further assumes that Covid-19 doesn’t have a significant disease burden, even though there is mounting evidence that the disease can cause considerable and long-lasting harm in otherwise healthy adults and children.

The Declaration assumes that durable immunity to the virus results from infection. But there are a handful of documented cases where reinfection has occurred, such as a 25-year old Nevada man who became seriously ill during his second bout with Covid-19.  It’s not clear how “durable” immunity is.

As Yale immunologist Akiko Iwasaki explains in a recent commentary in The Lancet, “reinfection cases tell us that we cannot rely on immunity acquired by natural infection to confer herd immunity; not only is this strategy lethal for many but also it is not effective."

The experiences of Arizona, Florida and Texas over the summer show that “Focused Protection” doesn’t work in the real world. All three states were hit hard during the summer surge, with hundreds of thousands of cases and tens of thousands of deaths. As we head into the fall, we’re now seeing a surge of new cases in the upper Midwest.

The Memorandum’s Practical Challenge

The John Snow Memorandum states that “controlling community spread of COVID-19 is the best way to protect our societies and economies until safe and effective vaccines and therapeutics arrive within the coming months.”

This is credible, given the experiences of Germany, New Zealand, South Korea and other nations that managed to control virus spread and minimize death and disease through a mixture of public health measures. They created national plans for testing, tracing and isolating, and with consistent public health messaging that minimized socioeconomic disruption. Lockdowns were not always necessary, either. Japan avoided a national lockdown, instead controlling spread with strong public health measures.

The United States, by contrast, has failed to do these things. We are not generally good at public health, as the worsening opioid overdose crisis has clearly shown. The failures in the overdose crisis were arguably prologue for the uncoordinated and undisciplined approach the U.S. has taken to the pandemic.

The Memorandum’s recommendations are laudable, but they will be hard to implement, even though current projections suggest over 170,000 more deaths and millions of new cases of Covid-19 in the coming months.

The U.S. needs to ask itself two questions. First, how did we get to a point where the Great Barrington Declaration even sounds like a good idea? Second, what can we do to find a better way forward, as suggested by the John Snow Memorandum, to avoid additional deaths and disease? Winter is coming and the coronavirus will have the run of the country unless we step up to stop it.

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

Are You Living in the Matrix?

By Dr. Lynn Webster, PNN Columnist

A recent Netflix documentary, "The Social Dilemma," illustrates how social media networks are selling each of us as commodities to advertisers. Tristan Harris, a former Google employee, points out that platforms such as Reddit, Facebook, Twitter and Instagram make money by allowing advertisers to target members who are interested in their products or services.

That means anyone who uses "free" social media are not just consumers. We are the products being sold.

We’re allowing our brains to be manipulated by sophisticated marketing and artificial intelligence (AI) designed to change our behavior. Each time we “like” something or stay on a web page for more than a second, we provide technology companies with additional knowledge about who we are and what makes us tick. Each click helps AI become better at manipulating us, deciding what we see and what we don’t.

Because the things that fill one person's newsfeed may never make their way into another’s, social media networks shape our version of reality while they polarize society. Unfortunately, “fake news” is sometimes more profitable to advertisers than real news. We have segued from living in the Information Age to subsisting in the Disinformation Age. This is especially frightening when we see how much influence conspiracy theories have in our culture today.  

According to the documentary, we have essentially isolated ourselves in a bubble of technology. Loneliness and depression are rampant in our society, and people interact less in the real world than they do online. When others "like" our posts, we get a hormonal rush of chemicals -- and when it dissipates, we crave another hit. The need for approval and belonging keeps us clicking.

As "The Social Dilemma" asks, "How do you wake up from the matrix when you don't know you are in the matrix?"

People with Pain Live in the Matrix, Too

The online audience for messages has become fragmented for people with different views. This limits the reach of any particular message to those who share the same beliefs or problems. That puts people living with pain who reach out to others through social media at a disadvantage they may not even understand.

The documentary makes the point that the only industry besides social media that uses the term “users” is the illicit drug world. People living with pain or addiction are vulnerable to the same dopamine rush that keeps us clicking to receive affirmation from others who share our experiences.

People in pain desperately want to be heard by people who can help them. But, because of AI, only those who already tend to be supportive of people in pain are likely to see their posts.

The very nature of chronic pain and addiction narrows people’s worlds. So does social media. It has a compounding effect. As a society, we need to understand that our world becomes narrower with each click.

Think of those you unfriend or the people who block you on social media. They are the ones you need to hear from, because they are people who have different views from yours. It may feel comfortable to stay within your own lane, but that won't help if your goal is to understood the world and help change it for the better.   

Bursting Your Information Bubble

There are general principles we can all use to sort the truth from the lies on the internet. One is to recognize that if you have a strong emotional response to an online message, you may have become the successful target of manipulation. Take a deep breath and tell yourself the manipulators found a way to trigger your dopamine release. Remember that the message you saw may be only partially true -- or not true at all.

Before you share a post or believe it yourself, verify the source. Check out the veracity of the story on Snopes or some other fact checker. Seek out sources other than those that appear in your timeline or on your news feed. Instead of trusting your search engine, proactively log onto news sites with opposing viewpoints.

If the stories you find feature quotes, go to the original source and see if the message was taken out of context. The greater your emotional reaction to the message, the greater the chances are that it is inaccurate, misleading information.

“The Social Dilemma” website offers a toolkit to “realign your relationship with technology” and explore these issues -- including what social media is doing to our democracy -- more deeply.

We can't ban the internet. We wouldn't want to, even if we could. There are obvious benefits to digital communication, and we can't put the genie back into the bottle.

However, if we don’t want to be trapped in a dystopia where humanity is controlled by a manipulated reality, we have to realize that "free" online services are anything but that. The cost is the truth. When we sacrifice a balanced view of the world because of our desire to belong, we risk locking ourselves in the matrix. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book The Painful Truth, and co-producer of the documentary It Hurts Until You Die. Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences. You can find Lynn on Twitter: @LynnRWebsterMD. 

Study Finds Most Drugs Ineffective for Neuropathic Pain

By Pat Anson, PNN Editor

A first of its kind study that compared four medications widely used to treat neuropathy found that all four were usually ineffective in treating pain and many patients stopped taking them due to side effects.    

Over 20 million people in the U.S. suffer from neuropathic pain, a tingling, burning or stinging sensation in the hands and feet caused by nerve damage. Neuropathy is often caused by diabetes, chemotherapy or trauma, but in about 25% of cases the cause is unknown and classified as cryptogenic sensory polyneuropathy (CSPN).

There is little guidance for physicians and patients on what drugs to take for CSPN, so researchers at the University of Missouri School of Medicine conducted a “real world” study in which 402 patients with CSPN took one of the four neuropathy medications.

The four drugs studied were nortriptyline (Aventyl), a tricyclic antidepressant; duloxetine (Cymbalta), a serotonin-norepinephrine reuptake inhibitor (SNRI) antidepressant; pregabalin (Lyrica), an anti-seizure drug; and mexiletine (Mexitil), an anti-arrhythmic medication used to treat irregular heartbeats.

Nortriptyline, duloxetine and pregabalin are approved by the FDA for treating neuropathy, while mexiletine is used off-label. None of the drugs were originally developed to treat neuropathic pain.

"As the first study of its kind, we compared these four drugs in a real-life setting to provide physicians with a body of evidence to support the effective management of peripheral neuropathy and to support the need for newer and more effective drugs for neuropathic pain," said lead researcher Richard Barohn, MD, executive vice chancellor for health affairs at the University of Missouri.

After 12 weeks of use, any drug that reduced pain for a patient by at least a 50% was considered effective, a recognized industry standard to define therapy success.. Researchers also kept track of patients who stopped taking a drug and dropped out of the study due to adverse effects.

The study findings, published in JAMA Neurology, can best be described as underwhelming. Patients were far more likely to stop taking a drug than they were to stay on a medication that was helping them.    

Of the four drugs, only nortriptyline was an effective pain reliever for at least 25% of patients. It also had the second-lowest drop-out rate (38%), giving it the highest level of overall utility. Duloxetine had the second-highest efficacy rate (23%) and the lowest drop-out rate (37%).

Pregbalin had the lowest efficacy rate (15%) and the second highest drop-out rate (42%), while mexiletine had the highest drop-out rate (58%) and an efficacy rate of 20 percent.

EFFICACY RATE OF NEUROPATHY DRUGS

SOURCE: JAMA NEUROLOGY

"There was no clearly superior performing drug in the study," Barohn said. "However, of the four medications, nortriptyline and duloxetine performed better when efficacy and dropouts were both considered. Therefore, we recommend that either nortriptyline or duloxetine be considered before the other medications we tested."

While nortriptyline had the highest efficacy rate, it also had the highest rate of adverse events, with over half of patients (56%) reporting side effects such as dry mouth, drowsiness, fatigue and bloating.  

Previous studies have found that duloxetine and pregabalin had higher efficacy rates for neuropathic pain, but Barohn and his colleagues say their research more accurately reflects what patients experience in real life and what physicians encounter in their practice.

“Our findings could affect how these 4 drugs are used by all physicians who treat patients with neuropathy. Findings support duloxetine and nortriptyline as better-performing drug choices in this population with neuropathic pain, suggesting that they should be prescribed before pregabalin or mexiletine are considered. However, this study also supports a finding that all 4 drugs helped improve pain in at least some patients, so each could be tried if others failed,” they concluded.     

There are several other drugs used to treat neuropathy, including gabapentin, venlafaxine and sodium channel inhibitors. Barohn says additional comparative studies should be performed on those drugs. His goal is to build effectiveness data on nearly a dozen drugs for CSPN.

Lancet Study Calls for Improvements in Pediatric Pain Care

By Pat Anson, PNN Editor

An international study by The Lancet has found that childhood pain often goes untreated, unrecognized and poorly managed, leading to chronic pain, disability and other negative consequences in adulthood.

The report by the Lancet Child and Adolescent Health Commission, led by the Centre for Pain Research at the University of Bath, found that too many children live with pain — even in developed countries — and calls for improvements in pediatric pain care, including diagnosis, pain management, social support and psychological treatment.

"Among health-care professionals, it is easy to agree that no child should experience pain if that pain can and should be prevented, avoided, or successfully treated,” said lead author Emma Fisher, PhD, a Versus Arthritis fellow at the University of Bath.

“In practice, however, we know there is ample evidence that children frequently experience preventable pain, and that in high-income settings, with advanced health-care systems and highly educated and regulated health professionals, children and young people experience pain that often goes unnoticed, unreported, or is not responded to, across healthcare including in the Emergency Department, post-surgical care, and in tertiary care.”

Childhood Pain ‘Swept Under the Carpet’

The report provides several examples of childhood pain not being recognized or treated adequately, such as what happened to Caitriona Roberts of Belfast, Northern Ireland. At age 12, she went to her doctor with pain and swelling in her ankle. Initially written-off as 'just a sprain' that would go away, she would spend the next six months living in almost constant pain, until she was referred to a specialist who diagnosed her with juvenile idiopathic arthritis, an autoimmune condition.

Now 28, Roberts has learned how to live and manage the disease. She helped researchers prepare The Lancet report.

"I think this issue has been swept under the carpet for too long. Still today, over 15 years on from my diagnosis with arthritis, I find people, including medical professionals, unaware of the condition or its effects on my day-to-day life. And when I speak to other young people, I find that sadly, very little seems to have changed in terms of how they experience pain or the support they receive,” Roberts said.

Researchers say up to 10% of young people experience chronic pain into early adulthood, with conditions such as arthritis, other types of musculoskeletal pain, recurring abdominal pain, and headaches.  

"This really matters, both for those experiencing pain and those around them but also across wider society. We know that chronic pain experienced in childhood is likely to feed through to adulthood and this has long-term health and economic costs associated,” said Fisher.

She called on providers and policymakers “to sit up and listen to the fact that too many of our young people are in pain and need help."

Myths About Opioids

One obstacle to getting that help is the stigma associated with opioid pain medication, particularly in the United States and Canada, where researchers say guidelines intended to control opioid use in adults are being “inappropriately applied to young people.”

“Substance use disorders and pain medication are both conflated in policy and in the media's portrayal of the North American opioid crisis,” the report found. “Through this media, public views have been influenced to consider opioids as drugs of addiction rather than pain medicine.  

“Health-care professionals, young people, and parents continue to hold misconceptions and believe myths about opioid use in pediatric patients, whereby the media depicts opioids as the villain and the underlying reason for substance misuse. Opioids have their place in pediatric pain medicine. In the context of the oversupply of opioids, childhood pain can usefully be considered a risk factor for long-term harmful exposure to opioids.”

More Than Growing Pains

The report found that improvements in pediatric pain care have come slowly. The last major intervention in the field came in the 1980’s, when it was recognized for the first time that babies experienced pain. Up until that point, a number of routine and major operations, including heart surgery, were carried out on babies without anesthetics.

"Parents tell us about the struggle they have convincing their GP that their child's illness is more than growing pains,” said Zoe Chivers, Head of Services at Versus Arthritis, which funded the report. “While the focus, attention, and dedication in providing quality services to children is consistently in place for conditions like cancer it's woefully absent for childhood arthritis and chronic pain.

"As a society we need to understand that dismissal of arthritis comes at high price and that adults and children living in pain with the condition should no longer be expected to pay it."

The study has four key goals: to make childhood pain matter, to make it understood, to make it visible, and to make it better. One recommendation is to make routine vaccinations less painful and stressful for children, such as allowing parents to be present during the injections and using topical analgesics.

"For many parents and children, a trip to the doctors for routine inoculations will be a stressful and painful experience. This does not have to be the case - we know how we can make the experience less painful for young people, but we're not doing it. This is just another example of how pain has been accepted as an everyday feature of growing up," said Fisher.

‘Partial Fill’ Rule for Pharmacies Would Harm Pain Patients

By Pat Anson, PNN Editor

A retired Nevada pharmacist who lives with chronic back pain is warning that patients will suffer if the Drug Enforcement Administration enacts a rule that allows pharmacists to only partially fill opioid prescriptions.

The DEA is under pressure from Sen. Elizabeth Warren (D-MA) and other members of Congress to stop “foot-dragging” and finalize a regulation that would allow patients to take home only part of their opioid prescription. They would have to return a second time to get the rest.

“I think it (the DEA partial refills) would have a huge impact on patients who regularly get their pain meds filled. Can you just imagine people already in pain having to go back to their pharmacy again to get the balance? Going once a month is already problematic for many. Twice a month would be inhumane,” Rick Martin said in an email to PNN.

“Pharmacists might not like it either because it would make them have to account for their inventory more often and maybe double the amount of work to fill the same Rx again.”

Warren, along with Sen. Dianne Feinstein, Sen. Shelley Moore Capito, Rep. Kathleen Clark and Rep. Steve Stivers, sent a bipartisan letter to acting DEA Administrator Timothy Shea last week urging him to update the “partial fill” regulation, as required under the 2018 Comprehensive Addiction and Recovery Act (CARA). 

“DEA has failed to issue its proposed rule, despite assurances in recent years that ‘this proposed rule is a top priority’ for the agency,” the letter says. “Defining ‘partial fill’ and fully implementing Section 702 of CARA will reduce the number of prescription opioids in circulation, a crucial step in addressing the opioid crisis that is devastating communities across the country. DEA’s continuing foot-dragging on this issue puts Americans at risk.”

Warren and her colleagues asked the DEA to provide an update and staff-level briefing on the matter no later than October 20.

Under current rules, the DEA only allows pharmacists to do a partial fill if they don’t have enough medication on hand to completely fill a prescription – something that many patients say is already happening. In a report issued earlier this year, the DEA said the supply of prescription opioids was at its lowest level since 2006.

“Once again, the letter just shows a bunch of busy-body ignorant uneducated senators sticking their nose where it doesn't belong,” said Martin. “They (pharmacists) shouldn't be doing this unless they don't have an adequate amount to fill or unless the patient gives them permission to partial fill.”

The Warren letter claims over half of those who abuse opioid medication obtain it from a friend or family member. The DEA, however, has said less than one percent of opioids that are legally prescribed are diverted.

Illicit fentanyl, heroin and other street drugs are responsible for the vast majority of overdoses. A 2019 study of overdoses in Massachusetts – Warren’s home state – found only 1.3% of overdose victims had an active opioid prescription.  

Doctor Who Lost Medical License Leading Effort to Sue Kolodny

By Pat Anson, PNN Editor

Pain patients and their supporters are planning to rally Wednesday at Brandeis University in Massachusetts, a protest against Dr. Andrew Kolodny, a senior scientist at Brandeis who co-directs opioid research at the Heller School for Policy and Management.

Kolodny is the founder and Executive Director of Physicians for Responsible Opioid Prescribing (PROP), an influential anti-opioid activist group that has led efforts to reduce opioid prescribing in the U.S. Many patients blame PROP for their poorly treated or untreated pain, as well as increased suicides in the pain community. The so-called “Killer Kolodny Rally” is being organized by Claudia Merandi of the Don’t Punish Pain rally organization.

“If we in the pain community want to make changes, we have a lot of work to do. We have been damaged severely. And Kolodny’s largely responsible,” says Dr. Arnold Feldman, a retired anesthesiologist who is working with Merandi to raise money for a possible class action lawsuit against Kolodny,

As PNN first reported, Kolodny and PROP played influential roles in drafting the CDC’s controversial 2016 opioid prescribing guideline. Kolodny is also a well-paid expert witness in opioid litigation cases.

“Kolodny is enriching himself to a very large degree,” Feldman told PNN. “Every day I am finding weblike connections between Kolodny and pharmaceutical manufacturers.”

Feldman and some patient advocates have claimed — without offering any proof — that Kolodny has benefited financially from promoting addiction treatment drugs like Suboxone.

The allegation led Kolodny to ask for and receive a letter from Indivior, Suboxone’s manufacturer, stating that he does not have a financial interest in the company and has received no payments from it as a consultant, speaker or in any other capacity.    

Nevertheless, Feldman claims that he has evidence of Kolodny’s culpability and will be able to uncover more once a class action lawsuit is filed.  He and Merandi have not been able to find a law firm willing to take the case.

DR. ARNOLD FELDMAN (YOUTUBE IMAGE)

“I’ve got lots of evidence. I’m not going to put it out in public because we’re going to need this in our case,” Feldman said. “Unfortunately, I’m not a stranger to lawyers.”

Medical License Suspended

Feldman has indeed fought and lost a number of legal battles, including an unsuccessful effort to get his medical license back after it was suspended in 2016 by Louisiana’s Board of Medical Examiners. The disciplinary action came after a patient died three years earlier while getting an epidural steroid injection at Feldman’s surgery clinic in Baton Rouge.

Feldman was charged with seven counts of negligence and unprofessional conduct, such as allowing an unlicensed and unsupervised employee to insert an IV into the patient and give him medication. The patient went into cardiac arrest during the procedure and Feldman was unable to revive him. 

“I had a patient who passed away. Not from anything I did. He had a cardiomyopathy and passed away. They tried to get me for that. But they couldn’t because the autopsy said he died from natural causes,” Feldman told PNN.

The state medical board felt otherwise and accused Feldman of a coverup, saying he gave investigators a “quite staggering” amount of false records and testimony about what happened.

“Dr. Feldman failed to adequately monitor the patient, exercised poor management or care of the patient after complications arose, and all of his resuscitation attempts were contributing factors to the patient’s death,” the board said in its ruling.

Feldman’s clinic had previously been cited in 2010, 2011 and 2013 for not following safety standards, putting patients in “immediate jeopardy” of injury and death.

Investigators also said Feldman allowed his employees to forge his signature and sign opioid prescriptions, and that he gave pre-signed prescriptions to patients without seeing them.

Feldman says he was denied due process by the medical board and appealed his suspension twice in court, but it was upheld both times.

“Dr. Feldman failed to adequately monitor the patient, exercised poor management or care of the patient after complications arose, and all of his resuscitation attempts were contributing factors to the patient’s death.”

— Louisiana Board of Medical Examiners

Because of the disciplinary action in Louisiana, Feldman’s medical licenses were also suspended in California, Alabama and Mississippi. Feldman had previously been reprimanded and put on probation by Mississippi’s medical board in 2000 after he “violated numerous laws and regulations” involving the prescribing, dispensing and administration of controlled substances.

In 2017, the Drug Enforcement Administration effectively ended Feldman’s career by revoking his DEA license to prescribe opioids and other controlled substances.   

No longer able to practice medicine, Feldman lost his home, car and clinic, and for a time lived in a motor-home, according to testimony he gave at a legislative hearing. He now lives in Florida. Feldman says he could have his medical license reinstated in Louisiana, but it would cost $460,000 that he doesn’t have.

‘I Know Pain Management Better Than Anyone’

Although he hasn’t practiced medicine in years, Feldman still considers himself an expert in pain management because he “learned skills that nobody else had.”

“I know this business, meaning pain management, better than anyone living. I’m a surgeon. I’ve done disc surgery. I’ve done pain pumps, (spinal cord) stimulators, and 100-thousand nerve blocks. I know what’s going on,” he said. “Most of these pain conditions are incurable, and I’ll tell you what, half of them are created by the medical profession.”

Since his forced retirement, Feldman has become something of a gadfly in the pain and legal communities, joining with another doctor whose medical license was revoked in filing a $28,000 trillion lawsuit against the Federation of State Medical Boards, the American Medical Association and other entities.

Feldman and Merandi have established a non-profit called The Doctor Patient Forum to advocate for doctors in legal jeopardy and pain patients who can’t get proper treatment. “He is brilliant. We work well together,” says Merandi.

The two have raised nearly $12,000 for the lawsuit against Kolodny, with most of the money coming in small donations from pain patients who know little or nothing about Feldman or how the money will be spent. 

“It’s in a bank account. I don’t touch it. I haven’t taken a dime. Nor will I ever. When we have enough money and find a law firm, that’s where the money will go,” he promised. 

“The only way to bring awareness to this is with litigation,” Merandi said in a recent radio interview. “We believe we have to bring Andrew Kolodny before a court of law. We have to bring the others before a court of law. We need an investigation done and that costs money.”

Legal experts say attorneys in class action lawsuits are typically not paid for their services and expenses unless they prevail in court. All payments have to be approved by a judge, with the money coming from the award or settlement — not the plaintiffs. Legitimate attorneys will not ask for upfront money in a class action case, according to consumer advocate Ron Burley.

Lawyers: ‘We Have Nothing To Do’ With Fundraiser for Kolodny Lawsuit

By Pat Anson, PNN Editor

The attorneys who filed lawsuits against three pharmacy chains for allegedly discriminating against pain patients are disavowing any connection with efforts to raise money for a proposed lawsuit against Dr. Andrew Kolodny, a prominent anti-opioid activist.

Dr. Arnold Feldman, a retired anesthesiologist, has a GoFundMe campaign underway to raise $100,000 for a class action lawsuit targeting Kolodny, the founder and Executive Director of Physicians for Responsible Prescribing (PROP). Feldman calls Kolodny an “anti-opioid zealot” who has harmed pain patients through his advocacy against opioid prescribing.

“To be clear, we have no involvement in or with any fundraising efforts by Dr. Feldman or others who may be associated with him or a possible lawsuit against Dr. Kolodny,” attorney Robert Redfearn, Jr. said in a statement to PNN. “Our focus and involvement is on and in the two national class action lawsuits that we filed in Rhode Island and California, through which we hope to bring some relief to pain patients.  Further, we have not received or accepted any funds from Dr. Feldman or others who may be associated with him.”

Feldman and his associate, Claudia Merandi, have claimed they were instrumental in filing the lawsuits against CVS, Walgreens and Costco on behalf of two pain patients. Merandi is one of the founders of the Don’t Punish Pain rally organization.

“BIG NEWS FOR PAIN COMMUNITY: We have filed class action lawsuit against CVS/WALGREENS for DENYING to fill opioid scripts. This will set a precedent as to why you DON'T PUNISH PAIN,” Merandi posted on Twitter when the lawsuits were filed in August.

“Dr. Feldman was successful in bringing a class action lawsuit against Walgreens and CVS to fruition and he will do the same for the Kolodny lawsuit,” Merandi posted to her followers on Facebook, sharing a link to the GoFundMe campaign.

“Fact: There's only a lawsuit filed against CVS and Walgreens because of Dr Feldman,” Merandi wrote in yet another tweet.

‘We Are Litigating This on Our Own’

But the lawyers who actually filed the lawsuits say Feldman and Merandi had nothing to do with their litigation, other than providing encouragement.

“In terms of their involvement, there is none. We are litigating this on our own,” said attorney Scott Hirsch. “We obviously don’t agree with Claudia’s stance that this is her lawsuit. It’s not. We’re representing the plaintiffs and the chronic pain community.”

Hirsch began working with Edith Fuog on her lawsuit against CVS in 2018, long before Merandi and Feldman were even aware of the case. He has been working without pay, which is usually the case in class action lawsuits. Attorneys are typically not paid until damages are awarded.

“We have nothing to do with any sort of fundraising that Claudia Merandi and Dr. Feldman are doing in terms of this lawsuit. There’s no fundraising that we’re doing or they’re doing for us or this Kolodny lawsuit. We have nothing to do with that. We’re not even interested in it, to be quite frank,” Hirsch said.

Hirsch, Redfearn and four other law firms are involved in the pharmacy lawsuits, which they hope will get class action status. If successful, the suits could potentially result in millions of dollars in damages being awarded to pain patients who were unable to get their opioid prescriptions filled.

“All these people came together and brought this lawsuit. It wasn’t just Dr. Feldman, he wasn’t the savior for us all. And that’s my issue. It’s not 100 percent truthful in her (Merandi’s) statement. There’s a lot missing,” Fuog told PNN. “I don’t know anything about what they’re doing with Dr. Kolodny. I don’t know who they are hiring. I don’t know where the funds are sitting until they hire a law firm. I don’t know the basis for the lawsuit that they want to file.”

So many misleading claims have been made that the six law firms representing Fuog and Susan Smith, who filed suit against Walgreens and Costco, have posted a disclaimer on their website disavowing any association with the GoFundMe campaign and Don’t Punish Pain.

“These groups on the internet, such as Don’t Punish Pain, have posted information about our lawsuits on their websites, Facebook, Instagram and other social media. This content is not affiliated with the lawsuits or our effort on behalf of chronic pain patients.

Please understand no organization except the affiliated lawyers and law firms handling these National Class Action Lawsuits are authorized to speak for us or make any financial or informational request on our behalf. In other words, please be advised that all other individuals or groups are NOT authorized to speak on behalf of us or the named plaintiffs in the lawsuits, NOT involved in the handling or prosecuting of the lawsuits, and NOT authorized to raise money to cover expenses associated with the lawsuits.”

Asked to clarify what role he played in the lawsuits, Feldman told PNN he “sounded the alarm” and alerted lawyers to what was happening to pain patients. He said his wife is among those who’ve had trouble getting their opioid prescriptions filled.

“I knew some lawyers and I said, ‘Guys, this is a problem. What do you think?’ And I harangued them and harassed them and called them and screamed at them,” Feldman explained.  “But I had nothing to do with it. I didn’t write the complaint. I didn’t file the complaint.

“I had nothing to do with this litigation. Nothing. Neither does Claudia. Other than the fact that we said we’re happy this has happened. That’s the extent of it.”

Merandi says she exchanged emails and participated in Zoom calls with the lawyers. And she continues to insist that Don’t Punish Pain was the driving force behind getting the CVS lawsuit filed in her home state of Rhode Island.

“This lawsuit was born out of the Don’t Punish Pain organization,” she claimed in a Facebook video feed, not mentioning that the lawsuit was filed in Rhode Island because CVS corporate headquarters is located there.

To date, nearly $12,000 has been donated to the GoFundMe campaign, with most of the money coming from hundreds of small donors, many of them pain patients.

Feldman says he and Merandi have had discussions with several lawyers, but so far no one has been willing to take the case against Kolodny.

“I had nothing to do with this litigation. Nothing. Neither does Claudia. Other than the fact that we said we’re happy this has happened. That’s the extent of it.”

— Dr. Arnold Feldman

“No, we haven’t found a lawyer yet,” he said. “But we’re going to find somebody. We’re talking about billions of dollars in litigation.”

“We want to raise a lot of money to pay these lawyers. Lawyers need to get paid and that’s why this GoFundMe is important,” Merandi said while promoting the fundraiser in a recent radio interview. “We need an investigation done and that costs money.”

Until a law firm is found, Feldman says the donated funds will remain untouched in a bank account. “I haven’t taken a dime. Nor will I ever. When we have enough money and find a law firm, that’s where the money will go,” he said.

Asked what would happen if no lawyer take the case, Feldman said the donated funds would be returned to donors. 

“It’ll be a pain in the ass, but of course. I’m not going to buy a BMW with it, I’ll tell you that much. I’m honest as the day is long. I would starve before I took that money,” Feldman said.

Nearly 80% of People Taking New Migraine Prevention Drugs Report Improvement

By Pat Anson, PNN Editor

Nearly 80% of people taking a new class of medication to prevent migraine say their migraine headaches are “better” since they started taking the drugs, according to a survey conducted by Eli Lilly.

Calcitonin gene-related peptide (CGRP) inhibitors prevent migraines by blocking a key protein released during migraine attacks from binding to nerve receptors in the brain. Since 2018, the FDA has approved three injectable CGRP inhibitors and one oral CGRP medication for migraine prevention. Eli Lilly makes Emgality (galcanezumab), one of the monthly self-injected drugs.

Nearly 600 migraine patients who use CGRP inhibitors participated in the survey, which is part of Lilly’s OVERCOME study, a large web-based survey of migraine sufferers.

While 79.2% said their migraine was better, nearly 10% said it was worse and about 11% said there was no change. The findings were relatively consistent between patients who suffer a handful of migraines each month and those who have them more frequently.

"It is very encouraging that nearly 4 out of 5 people in the survey taking a CGRP monoclonal antibody felt better and reported their migraine had improved," Sait Ashina, MD, a neurologist and scientific advisor to the OVERCOME study, said in a statement.

"It is also notable that the OVERCOME survey reported the clinically meaningful distinction between individuals who reported no change in their migraine with those who said their migraine worsened. This distinction can enhance conversations between the healthcare provider and the patient regarding treatment expectations when considering the use of these novel migraine preventive medications."

Nearly two-thirds (62.6%) of those who used a CGRP inhibitor said they also took another migraine prevention drug, such as topiramate and duloxetine. Use of an additional medication was generally higher among patients who reported frequent migraines.

Lilly presented the survey results this week at the 18th Migraine Trust International Symposium.

The findings are similar to those in a 2019 survey of migraine patients conducted by Health Union. Over half of those using CGRP inhibitors said the benefits of taking the drugs outweighed their side effects. About 9 percent said the medications were not worth the side effects, which include constipation, fatigue and weight gain.

The Health Union survey also found that patients who were not satisfied with a CGRP medication wasted little time switching to a new brand. Most of those who switched said the drugs did not work or stopped working after an initial period of efficacy. 

Patient Advocate Who Drew Attention to Pharmacy Discrimination Dies

By Pat Anson, PNN Editor

A patient advocate in California who fought breast cancer and helped draw attention to the discrimination often faced by pain patients at pharmacies has died. April Doyle passed away last month after a 12-year battle with metastatic breast cancer. She was only 42-years old.    

In April 2019, Doyle posted a tearful video on Facebook and Twitter after a Rite Aid pharmacist refused to fill her prescription for Norco, an opioid medication she took for cancer pain. At the time, her Stage 4 breast cancer had metastasized into her lungs, spine and hip. 

“I have to take 20 pills a day just to stay alive,” Doyle said in the video, which soon went viral. “Every time I take my pain pill prescription there, they give me the runaround. They don’t have enough in stock or they need me to come back tomorrow because they can’t fill it today. Or something stupid. It’s always something and it’s always some stupid excuse.”

Doyle’s video struck a chord with pain patients around the country, who often have trouble getting their opioid prescriptions filled. The publicity also led to apologies from a Rite Aid vice-president, the store manager and the pharmacist who refused to fill her prescription.

Doyle said the pharmacist told her he was worried about being fined or even losing his job if he filled her prescription, even though cancer pain is exempt from opioid prescribing guidelines. 

“It’s astonishing the reaction it has gotten. I had no idea this was so common. It’s actually kind of sad how common it is,” Doyle told PNN at the time. “It really struck a nerve with what’s apparently a big problem.”

Doyle wrote several articles about breast cancer that were posted online and her own blog. In her final post on AdvancedBreastCancer.net, Doyle shared her feelings and worries about her young son while she was sick at home from chemotherapy.

“He’s such an amazing boy and it isn’t fair that he has to grow up with a sick mother. If I’m even around for much more of his growing up. In my heart, I know this is what I’m really mourning,” she wrote.

“Cancer is slowly taking things away from me. I hate, hate, that I can’t do something myself. The stubbornness in me is resisting yet it comes out a waterfall of tears. Something so mediocre or dumb to someone else, but it’s an example of what my life has become and how I no longer can dictate what I can or cannot do.”

“April was a dedicated advocate in the metastatic breast cancer community. She told her story with authenticity and inspired so many young women and men living with the disease. She had a way of bringing people together and supporting people in all stages of breast cancer,” Doyle’s obituary in the Visalia Times said.

“She never let her disease define her. She never backed down from adversity and always stood forefront. April fought the stigma and stood up for patient rights. She leaves a legacy in the breast cancer community that will inspire people forever.”

Doyle leaves behind her 9-year old son, Colin. Her family asks that donations in her honor be made to METAvivor, a non-profit that supports breast cancer research.

Study Finds Cannabis Does Not Reduce Opioid Abuse

By Pat Anson, PNN Editor

It’s a common belief that cannabis may reduce the use of opioids and may even help solve the opioid crisis. But a new study by researchers at Columbia University Mailman School of Public Health found that people with substance abuse problems are just as likely to use heroin or to misuse prescription opioids on days when they consume cannabis.

The study, published in the journal Addiction, is believed to be one the first to test whether adults with substance abuse problems are substituting opioids with cannabis. Researchers followed 211 adults in the New York City area for 90 days, asking if they had used cannabis, heroin, or misused prescription opioids.

Participants were mostly male, unemployed, unmarried, and had a high prevalence of substance misuse and pain. “Misuse” of prescription opioids was defined as taking more pain medication than prescribed or without a prescription.

On average, participants reported they used cannabis on 15% of days without opioids, opioids were used on 15% of days without cannabis, and both cannabis and opioids were used on 7% of days. On days that participants used cannabis, the odds of using opioids nearly doubled. The findings were consistent whether participants were experiencing pain or not.

"Our results suggest that cannabis seldom serves as a substitute for non-medical opioids among opioid-using adults, even among those who report experiencing moderate or more severe pain," said Deborah Hasin, PhD, professor of epidemiology at Columbia Mailman School. "In other words, our study suggests that cannabis is not an effective way to limit non-medical opioid use."

Cannabis Users Need More Anesthesia

Another recent study found that cannabis may actually raise pain levels for patients recovering from surgery. In an analysis of 118 patients who had surgery for a broken leg at a Colorado hospital, researchers found that cannabis users needed more anesthesia during surgery than non-users. They were also more likely to have post-operative pain and use higher doses of opioid pain medication while hospitalized.

The findings, presented at the annual meeting of the American Society of Anesthesiologists, adds to the growing body of research suggesting that patients who use cannabis have higher anesthesia needs and more surgery-related pain.

"There is some evidence that cannabis may be beneficial for chronic and nerve pain. However, early research suggests that this is not the case for acute pain such as for surgery of a broken leg," said lead author Ian Holmen, MD, an anesthesiology resident at the University of Colorado Hospital in Aurora, where the study was conducted.

"We now understand patients who chronically use opioids prior to surgery often have exaggerated pain responses and need increased pain medication after surgery because they have an increased tolerance. We speculate that cannabis use may cause a similar effect, but we need more research to determine if this is the case."

Holmen and his colleagues found that cannabis users had higher pain scores while recovering from surgery and received 58% more opioids per day while hospitalized. They also needed about a third more anesthesia. The amount of anesthesia during surgery is typically based on observations of a patient’s involuntary body movements, increased heart rate, high blood pressure or increased rate of breathing, which are signs the patient may be experiencing more pain.

Researchers did not include in the study patients who suffered from chronic pain or those who had previously been prescribed opioids.

"This study shows that it is important for patients to tell their physician anesthesiologist if they have used cannabis products prior to surgery to ensure they receive the best anesthesia and pain control possible, including the use of non-opioid alternatives," said Holmen. "It also confirms that more research is needed to understand how cannabis impacts pain."

A 2019 study of patients who had colonoscopies found that regular marijuana users required three times the amount of a common sedative, propofol, as did nonusers.

How to Rekindle Romance While Living with Chronic Illness

By Barby Ingle, PNN Columnist  

Living with chronic illness can put a strain on any relationship, particularly marriages. To help other couples, my husband Ken and I have I decided to share our learned wisdom on how to rekindle romance in a chronically ill partnership.   

My first suggestion is to keep track in your pain diary so that you can remember the details. Record at what point during sexual intimacy that pain occurred or increased, and what the circumstances were when your pain subsided. Putting your thoughts on paper can help you understand the underlying issues and complications, and regain control of your intimacy.

Although Ken and I did not use a therapist, there are techniques that a therapist will suggest that can help a chronically ill person normalize their symptoms, which boosts self-esteem and lowers feelings of isolation. Improved self-esteem can enhance virtually every aspect of your life, including strengthening your relationships.

A life change due to health problems can be a common trigger for lowering how you perceive yourself. The challenge is to identify that this is going on and create an intimate connection with your partner at the same time.  

Take a look at what you are doing. Are you alienating yourself or your partner? If so, why? Think about your behaviors and beliefs. Are they holding you back from intimacy?

Consciously thinking positive thoughts can boost self-esteem, but it takes practice. How you approach it can make all of the difference. Start with simple words and reminders to yourself. Then reconnecting with your partner will become easier. 

Rekindling romance could be as simple as a few words, a gesture, or a look or touch that will let the other person know you are okay. Be conscious of this each day, so that not a day goes by without a kind word or gesture, even if you are not having sex daily. And really, who does that when they’re in constant pain?

Try this the next time you are washing your hands at the bathroom sink: Write “I love you” on the mirror with a soapy finger or lipstick. This can help create an intimate moment.  

Be the one to take control if your partner is afraid that they will hurt you further because of your current pain level. Be sure to reach out and let them know you would like to have a sexual experience. Say, “Do you want to have sex right now?” or whatever cute, sexy or clever way feels natural to you.  Lead the experience to relieve their worry.

Spouses often have different sexual desires. Turning your desire totally off just because of pain can cause harm to your relationship. Your partner probably married you expecting a healthy sexual relationship. Holding back on intimacy can lead to the end of a marriage or even infidelity.

The last thing a chronic pain patient needs is more discomfort. But when intimacy increases pain and leads to avoiding sex or even cuddling, the relationship suffers. Don’t let this be the beginning of a vicious cycle of no sex.  

What can you do to increase the connection, romance and sex that you have with your partner? When you are talking, try to share your struggles about staying close. You can also share positive thoughts, such as sex helping you cope with chronic pain. 

I hope that these tips can help you rekindle any lost sparks with your partner. All those things you don’t say could be keeping you and your partner on different pages. Turn on the power of romance and make your relationship stronger.

Believe me, I understand how difficult it can be to push yourself to be romantic when all you want to do is sleep or cry from the pain. Having a close relationship physically with your partner can make a huge difference in many areas of your life.

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. 

Most Patients Satisfied With Telehealth, But Some Exploited for Healthcare Fraud

By Pat Anson, PNN Editor

Telehealth has been a godsend for pain sufferers during the coronarvirus pandemic, with many patients discovering the ease and convenience of visiting with their doctors online or over the telephone. Some have even been able to get prescriptions written for opioid medication without an initial face-to-face meeting with their doctors – thanks to a DEA decision to relax some of the rules about prescribing controlled substances.  

Unfortunately, some providers are taking advantage of patients — and the pandemic — by filing billions of dollars in false medical claims.

Saving Time and Money

Most patients who use telehealth – also known as telemedicine – to connect with pain management specialists were highly satisfied with their experience, according to a new study presented at the annual meeting of the American Society of Anesthesiologists.

Last summer, researchers at UCLA’s Comprehensive Pain Center began giving patients the option of in-office visits or remote appointments via telehealth. Nearly 1,400 patients chose telehealth, resulting in nearly 3,000 virtual appointments before and during the pandemic, from August, 2019 to June, 2020.

“This era of contactless interactions and social distancing has really accelerated the adoption of telemedicine, but even before the pandemic, patient satisfaction was consistently high,” said lead author Laleh Jalilian, MD, an anesthesiologist at the Ronald Reagan UCLA Medical Center in Los Angeles.

“Patients who are being evaluated for new conditions may be better off having office visits initially. But once patients establish a relationship with providers, follow-up visits can occur efficiently with telemedicine, while maintaining patient rapport and quality outcomes. We believe 50 percent of our visits could be conducted via telemedicine.”

Asked about their experiences with telehealth, 92 percent of patients said they were satisfied. Many said they were happy to avoid the lengthy commutes and time spent in Los Angeles area traffic. On average, patients saved 69 minutes in traffic per visit and $22 in gas and parking fees.

For telehealth to be sustainable in a post-pandemic world, Jalilian says insurers should consider expanding reimbursement for providers to take into account the additional work and technology needed for telehealth visits. The Centers for Medicare & Medicaid Services (CMS) has waived many of the limits on telehealth visits during the pandemic and some private insurers have followed suit.

“Now that telemedicine is more widespread, it may become a valued part of care delivery in chronic pain practices,” said Jalilian. “Clearly many patients benefitted from remote consultations and follow-up appointments using telemedicine. We hope it will encourage policymakers and insurance providers to continue to support these platforms and inspire more innovation in this developing field of research and patient care.”

Telehealth Fraud Takedown

But as demand has grown for telehealth services, federal prosecutors say hundreds of healthcare providers have exploited the situation. In what’s being called the largest healthcare fraud and enforcement action in Department of Justice history, criminal charges were recently filed against 345 doctors, nurses and other providers for submitting over $6 billion in false and fraudulent claims to Medicare, Medicaid and private insurers. Some of the false claims were for COVID-19 testing.

The fraud charges involve more than $4.5 billion connected to telemedicine, $845 million involving substance abuse treatment, and $806 million connected to illegal opioid distribution.

“This nationwide enforcement operation is historic in both its size and scope, alleging billions of dollars in healthcare fraud across the country,” said Acting Assistant Attorney General Brian Rabbitt.  “These cases hold accountable those medical professionals and others who have exploited health care benefit programs and patients for personal gain.” 

Prosecutors say telemedicine executives allegedly paid kickbacks to doctors and nurse practitioners to order unnecessary medical equipment, genetic and other diagnostic testing, and pain medications, either without any interaction with patients or after a brief telephone conversation with patients they had never met or seen. Medical equipment companies, genetic testing labs and pharmacies then purchased the orders in exchange for illegal kickbacks and bribes.

In addition to those charges, CMS announced that it had taken administrative action against 256 healthcare providers, revoking their Medicare billing privileges because of their involvement in telemedicine schemes. 

“Telemedicine can foster efficient, high-quality care when practiced appropriately and lawfully.  Unfortunately, bad actors attempt to abuse telemedicine services and leverage aggressive marketing techniques to mislead beneficiaries about their health care needs and bill the government for illegitimate services,” said HHS Deputy Inspector General Gary Cantrell. 

The charges against substance abuse treatment facilities -- known as “sober homes” – mostly involve illegal payments to patient recruiters for referring scores of patients to treatment facilities. The patients were then subjected to medically unnecessary drug testing – often billing thousands of dollars for a single test – and therapy sessions that were often not provided.

Some sober homes also allegedly prescribed medically unnecessary controlled substances and other medications to patients to entice them to stay at the facility.  Prosecutors say the patients were then often discharged and admitted to other treatment facilities, or referred to other labs and clinics, in exchange for more kickbacks.