Few Take Advantage of Medicare’s Chronic Care Program

By Phil Galewitz and Holly Hacker, KFF Health News

Carrie Lester looks forward to the phone call every Thursday from her doctors’ medical assistant, who asks how she’s doing and if she needs prescription refills. The assistant counsels her on dealing with anxiety and her other health issues.

Lester credits the chats for keeping her out of the hospital and reducing the need for clinic visits to manage chronic conditions including depression, fibromyalgia, and hypertension.

“Just knowing someone is going to check on me is comforting,” said Lester, 73, who lives with her dogs, Sophie and Dolly, in Independence, Kansas.

At least two-thirds of Medicare enrollees have two or more chronic health conditions, federal data shows. That makes them eligible for a federal program that, since 2015, has rewarded doctors for doing more to manage their health outside office visits.

But while early research found the service, called Chronic Care Management, reduced emergency room and in-patient hospital visits and lowered total health spending, uptake has been sluggish.

Federal data from 2019 shows just 4% of potentially eligible enrollees participated in the program, a figure that appears to have held steady through 2023, according to a Mathematica analysis.

About 12,000 physicians billed Medicare under the CCM mantle in 2021, according to the latest Medicare data analyzed by KFF Health News. By comparison, federal data shows about 1 million providers participate in Medicare.

Even as the strategy has largely failed to live up to its potential, thousands of physicians have boosted their annual pay by participating, and auxiliary for-profit businesses have sprung up to help doctors take advantage of the program. The federal data showed about 4,500 physicians received at least $100,000 each in CCM pay in 2021.

Through the CCM program, Medicare pays to develop a patient care plan, coordinate treatment with specialists, and regularly check in with beneficiaries. Medicare pays doctors a monthly average of $62 per patient, for 20 minutes of work with each, according to companies in the business.

Without the program, providers often have little incentive to spend time coordinating care because they can’t bill Medicare for such services.

‘It Was Put Together Wrong’

Health policy experts say a host of factors limit participation in the program. Chief among them is that it requires both doctors and patients to opt in. Doctors may not have the capacity to regularly monitor patients outside office visits. Some also worry about meeting the strict Medicare documentation requirements for reimbursement and are reluctant to ask patients to join a program that may require a monthly copayment if they don’t have a supplemental policy.

“This program had potential to have a big impact,” said Kenneth Thorpe, an Emory University health policy expert on chronic diseases. “But I knew it was never going to work from the start because it was put together wrong.”

He said most doctors’ offices are not set up for monitoring patients at home. “This is very time-intensive and not something physicians are used to doing or have time to do,” Thorpe said.

For patients, the CCM program is intended to expand the type of care offered in traditional, fee-for-service Medicare to match benefits that — at least in theory — they may get through Medicare Advantage, which is administered by private insurers.

But the CCM program is open to both Medicare and Medicare Advantage beneficiaries.

The program was also intended to boost pay to primary care doctors and other physicians who are paid significantly less by Medicare than specialists, said Mark Miller, a former executive director of the Medicare Payment Advisory Commission, which advises Congress. He’s currently an executive vice president of Arnold Ventures, a philanthropic organization focused on health policy. (The organization has also provided funding for KFF Health News.)

Despite the allure of extra money, some physicians have been put off by the program’s upfront costs.

“It may seem like easy money for a physician practice, but it is not,” said Namirah Jamshed, a physician at UT Southwestern Medical Center in Dallas.

Jamshed said the CCM program was cumbersome to implement because her practice was not used to documenting time spent with patients outside the office, a challenge that included finding a way to integrate the data into electronic health records. Another challenge was hiring staff to handle patient calls before her practice started getting reimbursed by the program.

Only about 10% of the practice’s Medicare patients are enrolled in CCM, she said.

Jamshed said her practice has been approached by private companies looking to do the work, but the practice demurred out of concerns about sharing patients’ health information and the cost of retaining the companies. Those companies can take more than half of what Medicare pays doctors for their CCM work.

Physician Jennifer Bacani McKenney, who runs a family medicine practice in Fredonia, Kansas, with her father — where Carrie Lester is a patient — said the CCM program has worked well.

She said having a system to keep in touch with patients at least once a month has reduced their use of emergency rooms — including for some who were prone to visits for nonemergency reasons, such as running out of medication or even feeling lonely. The CCM funding enables the practice’s medical assistant to call patients regularly to check in, something it could not afford before.

For a small practice, having a staffer who can generate extra revenue makes a big difference, McKenney said.

While she estimates about 90% of their patients would qualify for the program, only about 20% are enrolled. One reason is that not everyone needs or wants the calls, she said.

Outsourcing Chronic Care

While the program has captured interest among internists and family medicine doctors, it has also paid out hundreds of thousands of dollars to specialists, such as those in cardiology, urology, and gastroenterology, the KFF Health News analysis found. Primary care doctors are often seen as the ones who coordinate patient care, making the payments to specialists notable.

A federally funded study by Mathematica in 2017 found the CCM program saves Medicare $74 per patient per month, or $888 per patient per year — due mostly to a decreased need for hospital care.

The study quoted providers who were unhappy with attempts to outsource CCM work. “Third-party companies out there turn this into a racket,” the study cited one physician as saying, noting companies employ nurses who don’t know patients.

Nancy McCall, a Mathematica researcher who co-authored the 2017 study, said doctors are not the only resistance point. “Patients may not want to be bothered or asked if they are exercising or losing weight or watching their salt intake,” she said.

Still, some physician groups say it’s convenient to outsource the program.

UnityPoint Health, a large integrated health system based in Iowa, tried doing chronic care management on its own, but found it administratively burdensome, said Dawn Welling, the UnityPoint Clinic’s chief nursing officer.

For the past year, it has contracted with a Miami-based company, HealthSnap, to enroll patients, have its nurses make check-in calls each month, and help with billing. HealthSnap helps manage care for over 16,000 of UnityHealth’s Medicare patients — a small fraction of its Medicare patients, which includes those enrolled in Medicare Advantage.

Some doctors were anxious about sharing patient records and viewed the program as a sign they weren’t doing enough for patients, Welling said. But she said the program has been helpful, particularly to many enrollees who are isolated and need help changing their diet and other behaviors to improve health.

“These are patients who call the clinic regularly and have needs, but not always clinical needs,” Welling said.

Samson Magid, CEO of HealthSnap, said more doctors have started participating in the CCM program since Medicare increased pay in 2022 for 20 minutes of work, to $62 from $41, and added billing codes for additional time.

To help ensure patients pick up the phone, caller ID shows HealthSnap calls as coming from their doctor’s office, not from wherever the company’s nurse might be located. The company also hires nurses from different regions so they may speak with dialects similar to those of the patients they work with, Magid said.

He said some enrollees have been in the program for three years and many could stay enrolled for life — which means they can bill patients and Medicare long-term.

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

Where is CDC’s Guidance About Its Opioid Guideline?

By Carol Levy, PNN Columnist

By happenstance, I recently came across the CDC's 2022 revised opioid prescribing guideline. Too many doctors and states saw the agency’s original 2016 guideline as being written in stone -- not the voluntary set of recommendations they were intended to be.

To their credit, the CDC tried to address that misconception in its updated guideline:

“Recommendations are voluntary and are intended to support, not supplant, individualized, person-centered care. Flexibility to meet the care needs and the clinical circumstances of a specific patient is paramount.”

The CDC also acknowledged the damage done by its 2016 guideline, when many pain patients were forcibly tapered or cutoff from opioids, regardless of their diagnosis or condition. 

Some patients were abandoned by doctors who no longer wanted to risk going to prison for prescribing opioids. Other physicians retired or closed their offices, sometimes without warning. And several states passed legislation limiting how many days initial opioid prescriptions could be written for.

It is always hard to put the genie back in the bottle. Two years after the revised guideline was released, about 90% of patients still have trouble getting their opioid prescriptions filled at pharmacies. Others have to fight with their insurance company to get opioid medication covered.

Patients are still being forced into withdrawal and disability, despite a history of taking opioids safely and responsibly. Some will have to leave jobs they could only perform with the help of opioids. Others can’t play with their kids, walk the dog or even get out of bed, because they are no longer able to get the medication that helped them lead relatively normal lives.

It should not have taken CDC six years to revise the opioid guideline, to make clear that they were only recommendations and never a mandate.

Is there a way to undo the damage? For the doctors who closed their practices or stopped treating pain, it is probably too late. For the patients who chose suicide because they could no longer get opioids, it is definitely too late

But maybe, just maybe, we can persuade doctors, pharmacists, lawmakers and insurers to take another look at the revised opioid guideline and convince them they are out of line.

It would be helpful if the CDC joined in an effort to fix the mess that it helped create.

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

Pain Patients Feel Abandoned by U.S. Healthcare System

By Pat Anson, PNN Editor

Many pain patients feel abandoned by the U.S. healthcare system and say it’s increasingly difficult to find a doctor or obtain opioid analgesics, according to a large new survey by Pain News Network. Some patients have turned to other substances – both legal and illegal -- for pain relief, and almost a third have contemplated suicide.

Nearly 3,000 pain patients or their caregivers participated in PNN’s online survey in the final weeks of 2023.

Over 90% of those with opioid prescriptions said they faced delays or problems last year getting their prescriptions filled at a pharmacy. Nearly a third were hoarding opioids because of fear they’ll not be able to get them in the future. And over 40% rated the quality of their pain care as “bad” or “very bad.”

“I’ve given up hope of getting help for chronic, severe pain in this country. I’m planning to move to where I can receive humane treatment,” one patient told us.

“The hoops in which I have had to jump through to get the minimal help that I have gotten throughout the years is ridiculous,” said another. “I have a very extensive and very well documented history of mental and physical trauma, but I am still treated as a drug seeker. I am currently unable to get any form of medication.”

“Every pain patient worries, from one month to the next, if their doctor will cut them off opioids or force taper them to such low levels that there is NO pain relief,” another patient wrote.

HOW WOULD YOU RATE THE CURRENT QUALITY OF YOUR PAIN CARE?

“I’ve spent the last 8 years explaining my inadequate pain control and lack of sleep that has fallen on deaf ears. I’ve tried so many different doctors and now feel like no one cares at all. Honestly feel as though they would rather see me die and be rid of me,” said another.

‘Impossible to Find Help’

About one in every four patients said they were tapered to a lower dose or taken off opioids — but only a small number were referred to addiction treatment. Less than one percent of those who stopped opioid treatment said it improved their pain and quality of life.

One in five patients couldn’t find a doctor to treat their pain. Many were abandoned by a physician or had a doctor who retired from clinical practice.   

• 20% Unable to find doctor willing to treat pain

• 14% Doctor retired or left their practice  

• 12% Abandoned or discharged by a doctor

• 27% Tapered to a lower dose or taken off opioids

• 3%   Received a referral for addiction treatment

• 0.6% Stopped opioids & pain and quality of life improved

“My primary retired. Then my rheumatologist moved to another state. Now most doctors don't prescribe and it's impossible to find help,” a patient wrote.

“Every pain management office in my area were nothing but nightmares waiting to happen. And every person I talked to… were solely concerned with either getting people off of pain medication or reducing the amount of medicine by over half,” said another.

“Doctors I talked to said they felt like they had a gun to their head and that they are being watched, so they won't prescribe or prescribe very little,” a patient wrote.

“My insurance just capped opioids to 7 days a month, so I have to choose whether to buy the other 3 weeks and cut back on my food budget, or take to my bed for 3 weeks a month,” said another.

“I am unable to find a new doctor to treat pain. A couple of years ago I was tapered from a previously working amount of pain med, so now I have daily severe pain and too many sleepless nights from pain. But the doc doesn't care. It seems my clinic system only sees me as an addict,” wrote another pain patient.

Risky Choices

With pain care increasingly difficult to find, nearly a third of patients said they considered suicide in the past year because their pain was so severe. Others adopted risky behaviors, such as hoarding opioid medication, obtaining opioids from another person, buying illicit substances off the black market, or using alcohol, cannabis and other substances for pain relief.    

• 29% Considered suicide

• 32% Hoarded opioid medication

• 30% Used cannabis for pain relief

• 14% Used alcohol for pain relief

• 11% Used kratom for pain relief

• 11% Obtained prescription opioids from friend, family or black market

•  4%  Used heroin, illicit fentanyl or illegal substance for pain relief

“I was taken off my prescription opioid twice and attempted suicide twice because the other prescriptions were not effective,” one patient told us.

“I have a therapist that has been helpful, because I have considered taking my life. He is concerned that I'm not getting adequate pain relief,” said another.

“Since suicide is against my faith, I prayed for death,” one patient wrote. 

“I know so many people that have stopped going to doctors and started buying heroin off the street. They say it’s easier and cheaper,” another patient said.

“The obscenely high cost of medical marijuana made me suffer so much financially that I have been unable to make use of the compassion center’s offerings,” wrote another patient. “Why on earth do we let plants be illegal in the first place, then let them be sold for so much money that they are almost impossible to afford on a disability income?”

“We desperately need to get away from the denial of opioids as a way to deal with this crisis. So far, the results of these laws on opioids have been an abject failure. Deaths have not been reduced, but actually increased due to chronic pain patients having to resort to suicide,” said another.

“I hope that all the people who are in charge of this will one day feel what I do and have some grasp of the pain situation people are forced to live through. They take care of their dogs and cats better than human beings,” a patient said.

“I have considered suicide multiple times over the past few years. These laws, while meant to curb illicit abuse of these medications, are harming legitimate patients like myself,” another patient wrote. “The worst part is that, for the time being, it looks like things are going to get much, much worse for me and the millions of others like me.” 

PNN’s online survey was conducted from November 13 to December 31, 2023. A total of 2,961 U.S. pain patients or caregivers participated. We’ll be releasing more results in the coming days.  

Why the Ruan Case Won’t Protect Doctors From Prosecution

By Dr. Joseph Parker

Doctors trying to save lives and help pain patients are regularly being sent to prison for prescribing opioids. And despite last year’s Supreme Court ruling in the Ruan case, that’s not changing.  Here’s why. 

First, it’s important to know what you are up against.  When the US federal government goes after a doctor or anyone else, they face a streamlined conviction machine.  Since the time of Ronald Reagan (who I voted for), the rights of an American citizen to challenge the charges against them or try to overturn an unjust conviction have been eroded. 

Then came President Bill Clinton (I voted for him too), who signed into law the Antiterrorism and Effective Death Penalty Act, doing more to ensure that the government can imprison the innocent than any other president since the Civil War.

At the founding of this nation, it was recognized that governments are prone to lock up people they don’t like, finding some legal pretext to justify their actions.  To guard against this, the Constitution and Bill of Rights were adopted to limit the powers of the federal government. 

Originally, there was only one federal crime: an act of treason. This crime was much more limited than the British version had been, when wandering over onto the King’s hunting grounds was considered treason. In the American version, you had to wage war against the United States or give aid and comfort to its enemies during a time of war. 

Then John Adams, the second president of the United States, made sedition a federal crime. Since then, so many federal laws have been added that government itself cannot tell you exactly how many or what they are.

That’s not counting all of the rules and regulations enforced by federal law enforcement, as if they were the law.  Locked up is locked up, after all.  Today the land of the free incarcerates more of its citizens than any other nation.  Not only that, but the sentences have become draconian. 

There is no nation on earth today where the liberty of a citizen has less value than in America.  The US incarcerates an average of 629 people for every 100,000 citizens. The next closest nations are Rwanda, Turkmenistan, El Salvador and Cuba. China and Russia don’t even make the Top 10.

Believe it or not, there are 37 states in the US that beat Cuba’s incarceration rate of 510 prisoners, with Louisiana coming in at a mind numbing 1,341. 

All of those inmates did not end up in prison by accident.  Looking at 2020 numbers, there were about 1,879 criminal cases heard in federal court.  Of those, about 90% of the accused plead guilty without even going to trial. Is that because the US government is absolutely right 90% of the time?  I am cautiously skeptical. Only 0.04% of cases -- 4 out of 1,000 – resulted in acquittal.  Those are not good odds. 

In Ruan v. United States, Dr. Xiulu Ruan appealed his conviction for prescribing opioids in an “unauthorized manner.” In a stunning unanimous verdict, the Supreme Court justices repeated what they said in 1925 in Linder v. United States, and then again in 2006 in Gonzales v. Oregon:  the federal government cannot dictate the practice of medicine and a doctor can only be prosecuted if they knew what they were doing was wrong.

As has happened in the past, US law enforcement doesn’t let something like a Supreme Court ruling slow them down.  They are completely ignoring the Ruan ruling by arguing something called “willful blindness.” What was the doctor willfully blind to?  To whatever opinion the government’s expert witness feels like arguing is the “usual practice of medicine” and “a legitimate medical purpose.”

Even though the Supreme Court made clear that only individual states can regulate the practice of medicine, the government’s hired expert does not have to come from your state or even be familiar with your state’s laws regarding the practice of medicine.

In effect, the DEA argues that there is a national practice of medicine that must be followed.  Where do they draw these medical practice standards when there is no such thing as a federal medical license?  From medical textbooks like the "Principles and Practices of Pain Medicine"?  No.  From the teachings of national medical organizations like the American Academy of Pain Medicine or the American Society of Addiction Medicine?  No again. 

The teachings from those sources are not allowed in court, unless you can get one of the original authors to come testify for you.  And sometimes, not even then.  The chapter on avoiding addiction in pain management from the above textbook was written by Dr. Alan Wartenberg.  Despite his advanced years, Dr. Wartenberg came to my trial to testify for me.  But he was not allowed to be considered as an expert in pain medicine, because he was “only” an addiction specialist. 

This is nothing compared to what happened to Dr. William Bauer of Ohio.  A dozen pharmacists, doctors, and scientists were willing to testify on his behalf, and all of them were disqualified by the court.  But the government’s “experts” in pain medicine can testify about almost anything, including addiction and even chronic cough.

The government does not convict you by proving you are guilty, they convict you by smearing you publicly long before you get to trial, and then making sure that the jury does not have access to the truth, by disqualifying experts, withholding favorable evidence, allowing false testimony, and making false statements to the jury. 

And remember, Dr. Ruan “won” at the Supreme Court. But he’s still in prison. 

Good luck and be prepared.  Ruan will not save you.

Joseph Parker, MD, is Chief Science Officer and Operations Officer at Advanced Research Concepts, a company developing solutions to the challenges of space travel and space-related medical issues.  In clinical practice, Dr. Parker specialized in emergency medicine and served as Director of Emergency Medicine at two hospitals. Prior to that, he had a distinguished career in the U.S. Marines and Air Force. 

In 2022, a federal jury convicted Dr. Parker on two counts of unlawful opioid prescribing. He has filed an appeal as he awaits sentencing.

A Pain Patient's Perspective on Opioid Prescribing

By Barby Ingle, PNN Columnist

It is essential to prescribe pain treatments that are appropriate and effective for each patient. I say that based on my own experiences as a patient, as well as thousands of others I have spoken with over the years as a friend and advocate.

Patients who need opioids, benzodiazepines, antidepressants and other medications should have access to them -- just as a heart patient has access to medication that keeps their heart functioning or a diabetic needs access to insulin.

People living with pain should also be offered individualized treatment. That could be anything from physical therapy and analgesics to surgical procedures and alternative therapies like acupuncture. I have tried over 100 different types of pain treatment; some have worked and others have not. It often made me feel like a guinea pig. Unnecessary surgery hurt me most in the end.

There are many public education campaigns underway to prevent addiction and overdoses by reducing the use of prescription opioids. These campaigns are repeated in the media, but the information does not always include facts or is presented in a misleading way.

For example, there is the DEA’s “One Pill Can Kill” campaign, which is aimed at raising awareness about a surge in counterfeit pills made with illicit fentanyl and other street drugs. Another is the CDC’s “Rx Awareness” campaign, which shares the stories of people whose lives were impacted by prescription opioids. The overall theme is that opioids are “addictive and dangerous.”  

Although well-intentioned, these campaigns have a tendency to demonize FDA-approved medications that have a lot of science and research behind them. Most people are unaware that fentanyl has been used safely and effectively for decades to treat severe pain and as an analgesic in millions of surgeries. Saying “one pill can kill” to a pain patient who has improved their life with a legally prescribed medication is disheartening.

I have seen this misinformation firsthand over the years and how it has put a damper on opioid prescribing. Physicians should prescribe opioids for pain when appropriate, but many are afraid to do so because of potential sanctions and legal threats. As a result, many providers won’t prescribe opioids or will only do so minimally and as a last resort.

Individualized Treatment

I believe each patient is different and should be treated as such. We need providers to operate on the assumption that each individual is unique and requires something different, even when they have the same disease or injury as someone else.

Physicians today can use pharmacogenomics to see if a patient’s DNA can affect how they respond to a treatment or what is chemically right for them. The dosage, brand, procedure and frequency will vary depending on each patient. I often bring my pharmacogenomics information to communicate more effectively with my providers, which benefits us both.

I also know that doing what is least invasive first and then progressing to other options is essential. Sometimes, surgery is the best option. Sometimes, opioids or other pain medications should be used first. Every medical provider should work at finding the treatment that most effectively suits the patient.

It is a considered best practice to prescribe opioids to someone in severe pain from sickle cell disease. Yet, when many sickle cell patients go to the ER or are admitted to a hospital, they are denied opioids because of hospital policy. What is the point of having a trained medical providers on staff if you won’t let them treat a patient the way they should be?

Denying pain relief is not only cruel, it can be the worst practice for everyone involved. For example, a man in severe chronic pain committed suicide after a doctor at a Kentucky pain clinic cut his opioid dose in half. The man’s family filed a lawsuit and won a $7 million judgement against the doctor and clinic.  

Ultimately, it should be the patient's responsibility to weigh the risks and benefits of any treatment, after getting input from their provider and conducting due diligence. Unfortunately, there are many obstacles standing in the way of that. One of the biggest is finding a doctor willing to prescribe pain medication. In addition, there are insurance restrictions, the cost of medication, and other logistical issues such as transportation to appointments.

Here in Arizona, patients must see their provider every month to renew a prescription for a controlled substance. Policies like that were put in place to “protect” pain patients, but only added extra costs, burdens and stigmas to them.

Patient-Physician Communication

How can we change the narrative about opioid prescribing? We can start by emphasizing the importance of effective communication between physicians and patients, even those as young as elementary school. Early education on how to talk to medical professionals and advocate for yourself is vital. I see this as one of the most critical things for patients to do.

Communication and trust are essential. Patients need to know when to take medication, how much to take, and what the potential side effects are. They also need to be able to express how the medication is working and what their symptoms are. Patients should feel comfortable asking questions and discussing their pain management plan. Physicians need to listen, provide feedback and give advice when needed.

Individualized treatment plans should be tailored to the patient’s age, gender, medical history, lifestyle and other factors.  That will help ensure that the treatment is effective and also reduce the risk of adverse reactions and potential complications. Collaborative decision-making makes patients feel more comfortable, confident in their treatment plan, and more likely to follow it.

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and the founder and former President of the International Pain Foundation. You can follow Barby at www.barbyingle.com. 

Is It Safe for Doctors to Recommend Medical Cannabis?

By Dr. Joseph Parker

Nearly two-thirds of oncologists and pain management specialists say they are worried about the legal repercussions of recommending medical cannabis to their patients. This is not an unreasonable fear.

According to one survey, 60% of doctors fear professional stigma, and for good reason. I have seen colleagues call the DEA to report that a physician who certified patients for cannabis was selling marijuana from their office.  As absurd as this might seem, once the DEA gets rolling, they can always find an excuse to prosecute a physician treating pain or addiction. 

Cannabis may soon be moved from a Schedule I controlled substance, with no approved medical use, to a less restrictive Schedule III, where it would be regulated like codeine. This might relax some of those physicians, but I’m not sure it will.

There are many politicians and law enforcement officers who simply believe that marijuana is evil. The extreme was former Attorney General Jeff Sessions, who said at one time that marijuana was “only slightly less awful” than heroin. 

Sessions may truly believe this, but the comparison has no basis.  Heroin can cause respiratory depression and death.  Cannabis cannot.  Heroin works on the endorphin receptors in the brain to trigger a dopamine-mediated reward response, which can lead to what I call “true” addiction. 

Cannabis works predominately through the endocannabinoid system, though it can indirectly influence the release of dopamine and other brain areas associated with the reward system. That’s because the endocannabinoid system and CB1 receptors play a regulatory role in the release of various neurotransmitters, including dopamine.

When tetrahydrocannabinol (THC) binds to CB1 receptors, it can affect the release of dopamine and other neurotransmitters, which contributes to the pleasurable and rewarding effects associated with cannabis use.

I am not saying that someone cannot develop a cannabis substance use disorder or dependence. They certainly can, just like you can with caffeine, sugar or gambling, for that matter.  What I’m saying is that cannabis can make people feel good and want more, but it is nowhere near as dangerous as heroin.  It is also not neurotoxic, like methamphetamine, which can cause the death of brain cells with a single use. 

Some studies actually show a neuroprotective effect from cannabis. And, when taken by itself, cannabis cannot cause an overdose death. This is important. 

Every time the U.S. government targets something, they pay an army of statisticians to generate scary-sounding numbers. For example, you will hear claims that a rise in fatal car accidents was “associated” with cannabis. What exactly does that mean?  It means that a large percentage of accidents involve people who use cannabis, which is unsurprising since about 40% of the adult U.S. population has or is using cannabis.

Those same accidents show a much higher correlation with caffeine.  Caffeine use could be “associated” with probably 90% of all car accidents.  But correlation, of course, does not prove causation. 

These arguments present no evidence that cannabis caused the accidents.  However, the news media can get sloppy about scientific accuracy.  A study will say that a certain number of accidents “involved” cannabis, and the media will report that the cannabis “caused” the accident.

CBD vs. THC

For some reason, Sessions was also obsessed with CBD (cannabidiol). CBD is not THC, which is psychoactive and has a significant effect on a user’s mental processes.  CBD is considered non-psychoactive by a majority of experts, including the World Health Organization.

THC has a higher affinity for CB1 receptors, which are primarily found in the brain and central nervous system, and is a partial agonist for both CB1 and CB2 receptors. Activation of CB1 can cause euphoria and relaxation. It also alters sensory perception, impairs short-term memory, induces anxiety and paranoia, and impairs motor coordination.

CBD does not directly activate those receptors or have those effects. It is instead considered a negative allosteric modulator of CB1 receptors. CBD modifies the CB1 receptor response to THC and actually moderates some of the psychoactive effects of THC.  

There is also evidence that CBD can be anxiolytic and antipsychotic, while THC has been linked (not proven) to be associated with schizophrenia and psychosis.  THC can lead to the release of dopamine, which accounts for the euphoria, but at too low a level to be compared with more addictive substances.

CBD has been found in at least one study to be effective in the treatment of heroin addiction, and in another study to increased motivation, possibly giving us something to treat symptoms of schizophrenia.

Does this all mean it is safe to recommend cannabis to your patients?  Not really. While cannabis has been shown in several replicated studies to be helpful in the treatment of chronic pain, right now it is not safe for doctors to prescribe or recommend. 

Even in states where cannabis is legal for medical use and federal courts have upheld the right of physicians to recommend it, I would argue that the DEA takes a different view.

In the recent prosecution of a physician for “overprescribing” opiates, prosecutors claimed at a press conference that they started investigating the doctor after a call from local police regarding an overdose death.  Evidence later showed this was not the case.  The doctor was actually first targeted for agreeing to certify patients for their state’s medical cannabis program. 

You can help educate your patients about cannabis, but send them on to someone who does not prescribe controlled substances. Until physician rights are restored and protected in this country, it’s just not safe to recommend cannabis.

Joseph Parker, MD, is Chief Science Officer and Operations Officer at Advanced Research Concepts, a company developing solutions to the challenges of space travel and space-related medical issues.  In clinical practice, Dr. Parker specialized in emergency medicine and served as Director of Emergency Medicine at two hospitals. Prior to that, he had a distinguished career in the U.S. Marines and Air Force. 

In 2022, a federal jury convicted Dr. Parker on two counts of unlawful opioid prescribing. He has filed an appeal as he awaits sentencing.

Shrinking Number of Primary Care Doctors Reaches Tipping Point

By Elisabeth Rosenthal, KFF Health News

I’ve been receiving an escalating stream of panicked emails from people telling me their longtime physician was retiring, was no longer taking their insurance, or had gone concierge and would no longer see them unless they ponied up a hefty annual fee.

They have said they couldn’t find another primary care doctor who could take them on or who offered a new-patient appointment sooner than months away.

Their individual stories reflect a larger reality: American physicians have been abandoning traditional primary care practice — internal and family medicine — in large numbers. Those who remain are working fewer hours. And fewer medical students are choosing a field that once attracted some of the best and brightest because of its diagnostic challenges and the emotional gratification of deep relationships with patients.

The percentage of U.S. doctors in adult primary care has been declining for years and is now about 25% — a tipping point beyond which many Americans won’t be able to find a family doctor at all.

Already, more than 100 million Americans don’t have usual access to primary care, a number that has nearly doubled since 2014. One reason our coronavirus vaccination rates were low compared with those in countries such as China, France, and Japan could be because so many of us no longer regularly see a familiar doctor we trust.

Another telling statistic: In 1980, 62% of doctor’s visits for adults 65 and older were for primary care and 38% were for specialists, according to Michael L. Barnett, a health systems researcher and primary care doctor in the Harvard Medical School system.

By 2013, that ratio had exactly flipped and has likely “only gotten worse,” Barnett said, noting sadly: “We have a specialty-driven system. Primary care is seen as a thankless, undesirable backwater.” That’s “tragic,” in his words — studies show that a strong foundation of primary care yields better health outcomes overall, greater equity in health care access, and lower per capita health costs.

Practices Sold

One explanation for the disappearing primary care doctor is financial. The payment structure in the U.S. health system has long rewarded surgeries and procedures while shortchanging the diagnostic, prescriptive, and preventive work that is the province of primary care. Furthermore, the traditionally independent doctors in this field have little power to negotiate sustainable payments with the mammoth insurers in the U.S. market.

Faced with this situation, many independent primary care doctors have sold their practices to health systems or commercial management chains (some private equity-owned) so that, today, three-quarters of doctors are now employees of those outfits.

One of them was Bob Morrow, who practiced for decades in the Bronx. For a typical visit, he was most recently paid about $80 if the patient had Medicare, with its fixed-fee schedule. Commercial insurers paid significantly less. He just wasn’t making enough to pay the bills, which included salaries of three employees, including a nurse practitioner.

“I tried not to pay too much attention to money for four or five years — to keep my eye on my patients and not the bottom line,” he said by phone from his former office, as workers carted away old charts for shredding.

Morrow finally gave up and sold his practice last year to a company that took over scheduling, billing, and negotiations with insurers. It agreed to pay him a salary and to provide support staff as well as supplies and equipment.

The outcome: Calls to his office were routed to a call center overseas, and patients with questions or complaining of symptoms were often directed to a nearby urgent care center owned by the company — which is typically more expensive than an office visit. His office staff was replaced by a skeleton crew that didn’t include a nurse or skilled worker to take blood pressure or handle requests for prescription refills. He was booked with patients every eight to 10 minutes.

He discovered that the company was calling some patients and recommending expensive tests — such as vascular studies or an abdominal ultrasound — that he did not believe they needed.

He retired in January. “I couldn’t stand it,” he said. “It wasn’t how I was taught to practice.”

‘Squeezed From All Sides’

Of course, not every practice sale ends with such unhappy results, and some work out well. But the dispirited feeling that drives doctors away from primary care has to do with far more than money. It’s a lack of respect for nonspecialists. It’s the rising pressure to see and bill more patients: Employed doctors often coordinate the care of as many as 2,000 people, many of whom have multiple problems.

And it’s the lack of assistance. Profitable centers such as orthopedic and gastroenterology clinics usually have a phalanx of support staff. Primary care clinics run close to the bone.

“You are squeezed from all sides,” said Barnett.

Many ventures are rushing in to fill the primary care gap. There had been hope that nurse practitioners and physician assistants might help fill some holes, but data shows that they, too, increasingly favor specialty practice. Meanwhile, urgent care clinics are popping up like mushrooms. So are primary care chains such as One Medical, now owned by Amazon. Dollar General, Walmart, Target, CVS Health, and Walgreens have opened “retail clinics” in their stores.

Rapid-fire visits with a rotating cast of doctors, nurses, or physician assistants might be fine for a sprained ankle or strep throat. But they will not replace a physician who tells you to get preventive tests and keeps tabs on your blood pressure and cholesterol — the doctor who knows your health history and has the time to figure out whether the pain in your shoulder is from your basketball game, an aneurysm, or a clogged artery in your heart.

Some relatively simple solutions are available, if we care enough about supporting this foundational part of a good medical system. Hospitals and commercial groups could invest some of the money they earn by replacing hips and knees to support primary care staffing; giving these doctors more face time with their patients would be good for their customers’ health and loyalty if not (always) the bottom line.

Reimbursement for primary care visits could be increased to reflect their value — perhaps by enacting a national primary care fee schedule, so these doctors won’t have to butt heads with insurers. And policymakers could consider forgiving the medical school debt of doctors who choose primary care as a profession.

They deserve support that allows them to do what they were trained to do: diagnosing, treating, and getting to know their patients.

The United States already ranks last among wealthy countries in certain health outcomes. The average life span in America is decreasing, even as it increases in many other countries. If we fail to address the primary care shortage, our country’s health will be even worse for it.

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

My Story: Make Your Doctors Accountable

By Crystal Moody, Guest Columnist

From a full-time medical education coordinator to full-time chronic pain patient, I am now trying to maneuver my way through the world from the other side of the operating table. And it is a completely different ballgame. Gaslighting, patient-blaming and condescension are daily players in this game.

I live with chronic back and neck problems, some caused by medical errors, and have undergone multiple spinal surgeries and procedures. I was legally labeled as “physically disabled” in 2018 by Social Security, but it took three years in California and I had to hire an attorney to make that happen. Every player in this game gets paid, except the patient.

It was the beginning of 2016 when I realized I was never going to be able to work in medicine in my former capacity again. However, even if my body was broken, my mind was not. I re-enrolled in college, wanting to keep my mind fresh in between surgeries.

In 2018, I completed my BA in Organizational Leadership at Azusa Pacific University (online and from bed). I then completed my Masters in Public Health from Los Angeles Pacific University in 2021. I am now pursuing a doctorate in Social Work.

I hope that my work and life experiences will allow me to help others, in the same ways that I have needed help. I want to help people with chronic, debilitating and life-threatening illnesses.

CRYSTAL MOODY

In the beginning of my illnesses, I did not understand why I could not just let things go. As time passed, I realized it was because I was witnessing doctors, specialists and clinicians who had no clue what they were doing. Even worse, I was beginning to realize that every doctor I consulted with seemed to count on the fact that I would not have any medical knowledge. They tried to placate or downplay my concerns, and send me on my way.

Initially, I thought it was because of my own ignorance as a patient. But in appointment after appointment, the truth became blatantly clear. If I had had no educational, personal, and/or professional experiences in medicine, they could have fooled me in every visit, every time.

My goal now is to train our doctors and specialists to be more patient, kind, empathic and ethical, by teaching patients how to be investigators of their own health information. Patients need to learn how to advocate for their own health during an era of “sloppy medicine.”

One such lesson is to teach patients where and how to hold their doctors and clinicians accountable. Never check hospital or medical practice reviews of your doctor. Those reviews are biased. As an ex-hospital employee, I can tell you who gets those reviews. Patients whose outcomes are successful and more likely to give positive reviews are noted by hospital employees. They send those patients the evaluation forms.

In the hospital where I worked, many evaluation forms were completed by other hospital employees. Some employees were even patients of the doctors they work with. How is that not a conflict of interest?

Always check for independent reviews through online sites such as HealthGrades. They are much better resources for patients with complex medical histories. You need to know who you are going to be working with, and it is immensely helpful to see other patients’ unbiased reviews of doctors. No one is a better professional in being and knowing you than YOU.

It should no longer be a one-way-street, with doctors doing all the talking during appointments. If patients know the right questions to ask, they will be better prepared to challenge the doctor for answers and direction. Patients deserve to get the most out of every visit. Additionally, I encourage you to observe if the doctor has a partner or assistant join them in your visits.

You should never go to an appointment alone, if you do not want to. If someone can’t physically be there, you can also make a FaceTime call to have a second set of “eyes and ears” at your appointments. The clinicians document your visits and sometimes bring reinforcements. You should, as well. Your input is valuable, and you should be documenting as much or more than your doctor.

The sad fact is that you are worth more to a doctor when you are sick than when you are well. They send you back and forth between their colleagues and specialists. It is time to cancel the hamster wheel of medicine and rebuild it through decency and transparency, with truly informed consent by both patients and doctors.

A poor doctor should not have the same status and pay as a good doctor, but they often are. What keeps a doctor honest if they earn the same despite their poor patient outcomes? Ultimately, for doctors to perform better, patients must be willing to hold them accountable when necessary.

Disabled patients should know there is no guilt or shame in disability, and that disability does not equal stupidity. There is opportunity for positivity in every negative situation.

Crystal Moody lives in California.

Do you have a “My Story” to share? Pain News Network invites other readers to share their experiences about living with pain and treating it.

Send your stories to editor@painnewsnetwork.org.

A Weird Trick to Get Doctors to Listen to You

By Crystal Lindell, PNN Columnist

There’s a lot of advice out there on how to get a doctor to take you seriously. Most of it is wrong.

Lucky for you, I’ve been in pain for a decade! Through trial and lots of errors, I’ve learned a few things and I’m happy to share them with you.  

First though, a little background on why you might need this information. It’s basically a rite of passage for chronically ill patients to lose their faith in doctors. We go in expecting Dr. Gregory House – the brilliant and grumpy lead character on the TV show House -- to solve the puzzle of our illness. Instead, we’re more likely to be met by a doctor with all of House’s hostility, but none of his determination.  

Doctors are notorious for downplaying symptoms, ignoring concerns, and blaming everything on the patient’s weight/smoking habit/stress/drug-seeking behavior.

They also tend to have a violent aversion to patients who suggest their own diagnoses. Their delicate doctor egos override any rational reaction and, more often than not, patients with chronic illness leave their appointments with no answers.

I used to think this only happened to women, but after attending multiple appointments with men in my family, I have come to realize that it’s just an across-the-board thing. My theory is that many of them became doctors so they can be seen as the smartest person in the room. And they hate it when patients treat them as equals, instead of the superior beings they believe themselves to be.

The problem is, a lot of patients tend to be really good at figuring out what’s wrong with their own bodies. They’re highly motivated to find answers, and they have more access to medical research tools then ever before in human history. Doctors love to mock Dr. Google, but that’s kind of like mocking libraries. Finding information online doesn’t automatically make it less valuable than finding it in a book.

Which brings us to the problem: Once we, as patients, figure out what might be wrong, how do we bring it up to our doctor without offending them?  

In short, it’s all about framing. You need to suggest that someone else is making you ask them about whatever it is you want to bring up. Let me share an example:

Do NOT say: “I think I have Ehlers-Danlos Syndrome.”

Instead, say: “My best friend wanted me to ask you about something. I don’t even think it’s a thing, but she thinks I might have something called EDS. Ehlers-Danlos syndrome, I think? I don’t know. It’s probably rare. But have you heard of it? Do you think I might have it?”

Here’s another example:

Do NOT say: “I think I have ADHD.”

Instead, say: “So my wife said I had to ask you about something. I don’t know if she’s right, but if I don’t bring it up with you, she’ll be really mad at me. She thinks I might have something called attention deficit disorder. And she said you might be able to help.”

Yes, I know, it’s annoying and demeaning. And you’re right, patients shouldn’t have to navigate medical conversations like this. They shouldn’t need to fake ignorance to get a doctor to help them.

But this column isn’t about overturning medical power structures. It’s about getting immediate results in what are often life-threatening situations. And I can assure you, this method works. I speak from experience. It is literally how I got my EDS diagnosis after dealing with chronic pain for years. I have shared this tip with others who have also used it successfully.

It works on every type of doctor, too. This is what you say to them:

To ER doctors: “My husband made me come here to get this chest pain checked out.”

To primary care physicians: “My roommate said I had to ask you about having my thyroid levels checked.”

To pain specialists: “My brother thinks I have rheumatoid arthritis and he wanted me to ask you about it.”

To psychiatrists: “My aunt said I should ask you about anxiety medications.”

This will not only help in getting them to take your symptoms seriously, it will also work on convincing them to order specific tests, offer specific medications, and consider a specific diagnosis.

This approach shifts the focus onto a third party, which helps doctors lower their defenses. If they think medical suggestions from patients are inane, you’re just feigning agreement with them. It effectively puts you on the same side as the doctor ⁠— the two of you against your loved one. Which is fine, because your loved one isn’t relying on them for medical care, so they can take the heat. And when the doctor feels like they’re on your side, they’re more likely to want to help.

This approach also means that the doctor knows you are likely to tell a third party what transpired during the appointment, which means they’ll be held to a higher level of accountability. That alone will often have a big impact on how they treat you.

Yes, it is wrong that patients have to use passive aggressive techniques just to get an MRI. But, as my mom always says, it’s better to be wrong than to be dead right. Sure you could insist on being more direct with your doctor, but if that doesn’t work — and the doctor dismisses your symptoms when they should be treating them — the choice could literally leave you dead. You’d be right, but you’d be dead right.

Hopefully, one day, patients won’t have to navigate their doctor’s fragile egos to get the care that they need. Until that day though, this will help. So go forth and be well. And if you can’t be well, at least be well prepared.

Crystal Lindell is a freelance writer who lives in Illinois. After five years of unexplained rib pain, Crystal was finally diagnosed with hypermobile Ehlers-Danlos syndrome. She and her fiancé have 3 cats: Princess Dee, Basil, and Goose. She enjoys the Marvel Cinematic Universe, Taylor Swift Easter eggs, and playing the daily word game Semantle. 

‘My Pain Was No Big Deal’: Obese Patients Often Stigmatized by Doctors

By Lauren Sausser, Kaiser Health News

When Melissa Boughton complained to her OB-GYN about dull pelvic pain, the doctor responded by asking about her diet and exercise habits.

The question seemed irrelevant, considering the type of pain she was having, Boughton thought at the time. But it wasn’t unusual coming from this doctor. “Every time I was in there, she’d talk about diet and exercise,” said Boughton, who is 34 and lives in Durham, North Carolina.

On this occasion, three years ago, the OB-GYN told Boughton that losing weight would likely resolve the pelvic pain. The physician brought up diet and exercise at least twice more during the appointment. The doctor said she’d order an ultrasound to put Boughton’s mind at ease.

The ultrasound revealed the source of her pain: a 7-centimeter tumor filled with fluid on Boughton’s left ovary.

“I hate that doctor for the way she treated me — like my pain was no big deal,” Boughton said. “She seemed to make a decision about me based off of a very cursory look.”

Research has long shown that doctors are less likely to respect patients who are overweight or obese, even as nearly three-quarters of adults in the U.S. now fall into one of those categories. Obesity, which characterizes patients whose body mass index is 30 or higher, is pervasive in the South and Midwest, according to the Centers for Disease Control and Prevention. The state with the highest rate is Mississippi, where 4 in 10 adults qualify as obese.

Obesity is a common, treatable condition linked to a long list of health risks, including Type 2 diabetes, heart disease, and some cancers. Despite obesity’s prevalence, it carries a unique stigma.

‘Almost Like Malpractice’

Doctors often approach the practice of medicine with an anti-fat bias and struggle to communicate with patients whose weight exceeds what’s considered the normal range. Some obesity experts blame a lack of focus on the subject in medical schools. Others blame a lack of empathy.

To counter that, the Association of American Medical Colleges plans to roll out in June new diversity, equity, and inclusion standards aimed at teaching doctors, among other things, about respectful treatment of people diagnosed as overweight or obese.

That’s not happening for many patients, said Dr. Scott Butsch, director of obesity medicine at the Cleveland Clinic’s Bariatric and Metabolic Institute. “This is almost like malpractice. You have these physicians or clinicians — whoever they are — relating everything to the patient’s obesity without investigation,” Butsch said. “The stereotypes and misperceptions around this disease just bleed into clinical practice.”

The problem, Butsch argued, is that too little attention is paid to obesity in medical school. When he trained and taught at Harvard Medical School for several years, Butsch said, students received no more than nine hours of obesity education spread over three days in four years.

In 2013, the American Medical Association voted to recognize obesity as a disease. But, Butsch said, doctors often approach it with a one-size-fits-all approach. “Eat less, move more” doesn’t work for everyone, he said.

Parents and medical providers need to take special care when talking to children who have been diagnosed with obesity about their weight, psychologists have warned. The way parents and providers talk to kids about their weight can have lifelong consequences and in some cases trigger unhealthy eating habits. For children who are obese, obesity experts agree, weight loss isn’t always the goal.

“There are many different forms of obesity, but we’re treating them like we’re giving the same chemotherapy to all kinds of cancer,” Butsch said.

Doctors Poorly Trained About Weight

All but four of the country’s 128 M.D.-granting medical schools reported covering content related to obesity and bariatric medicine in the 2020-21 academic year, according to curriculum data provided to KHN by the Association of American Medical Colleges, which does not represent osteopathic schools.

Even so, research suggests that many physicians haven’t been sufficiently trained to address weight issues with patients and that obesity education in medical schools across the world is “grossly neglected.” A survey completed by leaders at 40 U.S. medical schools found that only 10% felt their students were “very prepared” to manage patients with obesity.

Meanwhile, “half of the medical schools surveyed reported that expanding obesity education was a low priority or not a priority,” wrote the authors of a 2020 journal article that describes the survey’s results.

Butsch wants Congress to pass a resolution insisting that medical schools incorporate substantive training on nutrition, diet, and obesity. He acknowledged, though, that the medical school curriculum is already packed with subject matter deemed necessary to cover.

Dr. David Cole, president of the Medical University of South Carolina, said plenty of topics should be covered more comprehensively in medical school but aren’t. “There’s this massive tome — it’s about this big,” Cole said, raising his hand about a foot off the top of a conference table in Charleston. “The topic is: Things I never learned in medical school.”

The bigger issue, he said, is that medicine has historically been taught to emphasize memorization and has failed to emphasize culturally competent care. “That was valid 100 years ago, if you were supposed to be the fount of all knowledge,” Cole said. “That’s just not valid anymore.”

The Association of American Medical Colleges is trying to tackle the problem in two ways.

First, it developed a professional readiness exam for aspiring medical school students, called PREview, designed to assess an applicant’s cultural competence, social skills, and listening skills, as well as their ability to think through situations they may encounter in medical school and clinical settings.

“We call them softer skills, but they’re really the harder ones to learn,” said Lisa Howley, an educational psychologist and senior director of strategic initiatives at the association. More than a dozen medical schools now recommend or require that applicants submit their PREview test scores with their Medical College Admission Test scores.

Second, the medical college association will roll out new competency standards for existing medical students, residents, and doctors related to diversity, equity, and inclusion in June. Those standards will address racism, implicit bias, and gender equality and will aim to teach doctors how to talk with people who are overweight.

“The bias toward those individuals is way too high,” Howley said. “We have a lot more work to do in this space.”

After the source of Melissa Boughton’s pelvic pain was discovered, the OB-GYN who had recommended diet and exercise to ease her symptoms told Boughton the tumor was no big deal. “She acted like it was the most normal thing in the world,” Boughton said.

Boughton sought a second opinion from a doctor who marketed her practice as a “Healthy at Every Size” office. That doctor referred Boughton to a surgical oncologist, who removed the tumor, her left ovary, and part of a fallopian tube. The tumor was large, but it wasn’t cancerous. And although the surgery to remove it was considered successful, Boughton has since had trouble conceiving and is undergoing fertility treatment as she tries to have a baby.

“It’s an emotional roller coaster,” she said. “I feel very young at 34 to be going through this.”

Boughton — who describes herself as someone who doesn’t “fit into the BMI box” — said the experience taught her to choose her doctors differently.

“You can ask me if I diet and exercise like once,” she said. Any more than that, and she starts shopping for a different doctor.

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

Patients and Doctors Finally Talking About Medical Cannabis

By Pat Anson, PNN Editor

Communication is important in every relationship, especially between doctors and patients. And a new survey suggests that the stigma that has long kept cannabis a dirty secret in the exam room may finally be disappearing.   

The survey of 445 healthcare providers who treat chronic pain found that 72% of them have patients who requested or asked about medical cannabis in the last 30 days. Patients asked about cannabis far more often than other alternative pain treatments, such as acupuncture (37%), physical therapy (13%) and massage (10%).

The online survey was recently conducted by Cannaceutica, a healthcare company developing a line of cannabis products to treat pain. A variety of providers participated in the survey, including general practitioners, pain management specialists, neurologists, rheumatologists, and nurse practitioners.

People weren’t always so willing to talk to healthcare providers about cannabis, fearing they’d be seen as pot heads or even be dropped as patients. National surveys conducted in 2018 and 2019 found that less than 40% of patients told their doctors about their cannabis use.  

More patients are talking about cannabis today, and more doctors are willing to listen. The vast majority of providers (81%) in the Cannaceutica survey believe cannabis will play a role in the future management of chronic pain, but only one in four are likely to recommend it now. The primary factors holding them back are legal and regulatory issues, and the lack of good quality cannabis research.

Medical cannabis is legal in 36 states, but remains illegal at the federal level. If cannabis were legalized federally, 74% of providers said they would be likely to recommend it to a patient.

To increase their comfort level about recommending cannabis, providers want to see more research and documentation about cannabis as a pain treatment. Nearly two-thirds (64%) said patients were their main source of information about cannabis, followed by the internet (44%) and medical journals (40%).

Over half the providers surveyed said current treatment options are insufficient to treat chronic pain (56%) and that they were actively seeking alternatives (58%) for their patients. It’s worth noting that pain management specialists were most likely to say current treatments are inadequate (59%) and that they were seeking alternative treatments (66%).  

Clinical Trial Seeks Volunteers

Cannaceutica is currently enrolling chronic pain patients in a clinical trial to test the safety and efficacy of its cannabis capsules, which contain a blend of tetrahydrocannabinol (THC) and cannabidiol (CBD), as well as the cannabinoids cannabichromene (CBC) and cannabigerol (CBG). A recent study found that CBG boosts the potency of cannabis products used to treat chronic pain, depression, insomnia and anxiety.

The observational study is being led by University of California, Irvine researcher Dr. Marcela Dominguez. She and her team hope to enroll 107 patients in the trial, which is expected to last 14 to 16 weeks. They’re looking for people who have experienced pain for at least three months, have tried at least two different medications, and are not currently using cannabis. Patients with fibromyalgia or cancer pain are not eligible to participate.

If you would like to volunteer or get more information in the study, click here.

Misogyny in Medicine Harms Fibromyalgia Patients

By Dr. Denise Phan, Guest Columnist

Anyone who has practiced medicine or been involved in women's health in the past 50 years has encountered fibromyalgia in one form or another. Many of us have seen the fibromyalgia pendulum swing from under-recognition to over-diagnosed, and back to under-diagnosed again.

Although the course of fibromyalgia mirrors our society's recognition and treatment of pain in general, this particular disorder is also handicapped by its association with women. Since women were not part of the medical and research establishment until recently, diseases that affect women exclusively or predominantly have often been ignored or downplayed. 

Admittedly, fibromyalgia is not an easy diagnosis to make and has no reliable treatments. It is also not progressive, does not cause permanent muscle or joint damage, and does not directly cause early death. Until recently, there were no easy blood markers for fibromyalgia as with other rheumatologic diseases. No x-rays or MRI findings can help diagnose it. 

But the main problem with fibromyalgia was that the vast majority of patients who present with this syndrome of widespread pain and tender points are women.

Thus, it was easier for the arrogant and sexist wing of medicine to relegate fibromyalgia to the "histrionic" or "psychogenic" disorders that predominantly affect women. 

DR. DENISE PHAN

Other examples of severe disabling painful conditions that affect women more than men are endometriosis, pelvic pain, polymyalgia rheumatica, migraine, lupus, scleroderma, and trigeminal neuralgia. Some of these disorders are just now being recognized, researched and beginning to get treated. 

Though the term fibromyalgia was first coined in the 1970s, the disease can be traced back thousands of years to biblical times. When I was going through medical school and residency training in the 1980s, many of my attending physicians refused to recognize fibromyalgia as a "real" disorder and often did not offer any treatment for it. 

To some degree, this was due to our poor understanding of how the nervous system affects musculoskeletal tissue. But in the vast majority of cases, the refusal to acknowledge fibromyalgia stemmed from the undercurrent of misogyny that permeates medicine even today. 

Learning How to Treat Fibromyalgia

There were others in the medical community who recognized fibromyalgia and taught me what it was, how to diagnose it, and how to treat it -- despite our very limited, almost non-existent treatment options at the time.

In the 1990s, when I started my private practice in California’s San Fernando Valley, my practical education of fibromyalgia was furthered by the multiple women who presented in my office with this puzzling, intractable disease. Since there were no FDA-approved treatments yet, we would try every and any off-label treatment possible to see if we can get any long-term or even short-term relief of symptoms. 

There were the traditional trials of NSAIDs, tricyclics like amitriptyline, trazodone, SSRI's, low dose opioids, muscle relaxants, warm water physical therapy, trigger point injections; and then the non-traditional treatments like guaifenesin, anti-inflammatory diets, acupuncture, yoga, tai-chi, sauna, infrared therapy, cannabis, low dose naltrexone and moving to a warm, dry climate. 

Although none of these treatments are highly effective; when they did work it was a tremendous relief to restore function to these long-suffering patients. Despite this, I would still occasionally learn of suicide threats and attempts by fibromyalgia patients who did not respond to any of these treatments. 

These patients pushed me and other doctors to treat pain seriously; so that it does not become a cause of other morbid pathologies such as depression, fibro fog, cervicogenic headache, irritable bowel, overactive bladder and chronic fatigue. It also emboldened us to use stronger opioids, if necessary, to control chronic pain. This coincided with the release of longer-acting opioids like MS Contin, fentanyl patches and OxyContin. 

As the recognition of fibromyalgia went mainstream in the 2000s, so did the push to control pain more aggressively with higher doses of opiates. Laws were passed and guidelines were published, urging physicians to treat pain seriously. Physicians were taught, in one seminar after the other, that longer-acting opioids would control pain throughout the day with less need for pill-popping. This would provide more stable blood levels and less euphoria, making opioids less habit-forming and minimize addiction potential. 

In the late 2000s, Lyrica was the first medication specifically approved for the treatment of fibromyalgia, followed in quick succession by Savella and Cymbalta. Fibromyalgia patients benefited from the increased recognition and treatment of their disorder and the aggressive approach to pain control. 

Many of my patients who didn't respond to off-label treatments achieved remission with the new FDA-approved meds. Some who didn't were eventually stabilized on higher doses of hydrocodone, oxycodone, Dilaudid, methadone, buprenorphine, morphine or fentanyl. Some of the more severe cases were able to get off oral meds and restore normal daily function after we implanted subcutaneous pain medicine pumps. 

A New Betrayal

Then in the early 2010s, reports of rising death tolls from opiate overdoses began coming in, often involving drug seekers who were crushing and snorting OxyContin tablets to get high. It was also recognized that patients on chronic opioids were at risk of accidental overdose.

In response, more cautious opioid prescribing guidelines came out from state medical boards and the CDC; followed by the DEA prosecuting pharmacies and pain management doctors. One pain clinic after another started closing down, their patients were often red-flagged and unable to find new doctors. Vast numbers of patients became collateral damage as the news media and legal profession fanned the flames of the war against opiates. 

For chronic pain patients in general, the lack of access to pain meds required them to make serious adjustments to their lifestyles, like not getting out of bed, not holding a job, and not taking care of their family. For many fibromyalgia patients, it was as if the doors to treatment were slammed shut. 

The latest betrayal for these patients is coming from the medical and academic community itself. I was horrified and shocked at my last pain management seminar when the young professor lecturing on the topic of fibromyalgia stated aloud the official current policy of the medical community is that there is no role for opioids in treating fibromyalgia. 

When asked what we should do for patients who have failed all the recommended treatments, FDA-approved and otherwise, he could only recommend yoga. That was when I realized that misogyny was back in style. The medical community has been cowed by “opiate hunters” into toeing the line and spouting what is essentially a ludicrous theory: the idea that we should not use pain medicine in the treatment of chronic pain. 

This is what is being taught today in medical schools all over the country. The next generation of physicians is being trained to think that it's okay to leave people in chronic pain day after day, when there are good medicines available that, when used judiciously, may be able to restore life and function to an incapacitated patient. 

Obviously, there is the risk of serious side effects from opioids, just as there are for any powerful medications. But that is what we are trained to do, to take into account these side effects for each individual patient, to evaluate the risks versus benefits of each treatment, and to monitor them as best we can. That is what my Hippocratic Oath tells me to do. 

Now, if only we can get through to the other less misogynistic side of the medical community. The ones with enough courage to speak truth to power. There are some of them in medical schools and ivory towers everywhere, who can recognize injustice and who will speak common sense to our future doctors. 

Dr. Denise Phan is an Internal Medicine physician in Los Angeles. She works in private practice in the San Fernando Valley and is on staff at Valley Presbyterian Hospital. Dr. Phan is active in the annual missions of the mobile health units of the Social Assistance Program for Vietnam and the International Humanitarian Mission.

Doctors Required to Provide Patient Health Records at No Cost and On Demand

By Sarah Kwon, Kaiser Health News

A new federal regulation makes it easy to get test results and see what your doctor is recording about your health. One downside: You might not understand what you read.

Last summer, Anna Ramsey suffered a flare-up of juvenile dermatomyositis, a rare autoimmune condition, posing a terrifying prospect for the Los Angeles resident: She might have to undergo chemotherapy, further compromising her immune system during a pandemic.

After an agonizing three-day wait, the results of a blood test came back in her online patient portal — but she didn’t understand them. As hours passed, Ramsey bit her nails and paced. The next day, she gave in and emailed her doctor, who responded with an explanation and a plan.

For Ramsey, now 24, instant access to her test results had been a mixed blessing. “If there’s something I’m really nervous about,” she said, “then I want interpretations and answers with the result. Even if it takes a few days longer.”

On April 5, a federal rule went into effect that requires health care providers to give patients like Ramsey electronic access to their health information without delay upon request, at no cost. Many patients may now find their doctors’ clinical notes, test results and other medical data posted to their electronic portal as soon as they are available.

Advocates herald the rule as a long-awaited opportunity for patients to control their data and health.

“This levels the playing field,” said Jan Walker, co-founder of OpenNotes, a group that has pushed for providers to share notes with patients. “A decade ago, the medical record belonged to the physician.”

But the rollout of the rule has hit bumps, as doctors learn that patients might see information before they do. Like Ramsey, some patients have felt distressed when seeing test results dropped into their portal without a physician’s explanation. And doctors’ groups say they are confused and concerned about whether the notes of adolescent patients who don’t want their parents to see sensitive information can be exempt — or if they will have to breach their patients’ trust.

Barriers Removed

Patients have long had a legal right to their medical records but often have had to pay fees, wait weeks or sift through reams of paper to see them.

The rule aims not only to remove these barriers, but also to enable patients to access their health records through smartphone apps, and prevent health care providers from withholding information from other providers and health IT companies when a patient wants it to be shared.

Privacy rules under the Health Insurance Portability and Accountability Act, which limit sharing of personal health information outside a clinic, remain in place, although privacy advocates have warned that patients who choose to share their data with consumer apps will put their data at risk.

Studies have shown numerous benefits of note sharing. Patients who read their notes understand more about their health, better remember their treatment plan and are more likely to stick to their medication regimen. Non-white, older or less educated patients report even greater benefits than others.

For Sarah Ford, 34, of Pittsburgh, who has multiple sclerosis, reading her doctor’s notes helps her make the most of each visit and feel informed.

“I don’t like going into the office and feeling like I don’t know what’s going to happen,” she said. If she wants to try a new medication or treatment, reading previous notes helps her prepare to discuss it with her doctor, she said.

The new rule will have less impact on Ford and the more than 50 million patients in the U.S. whose doctors had already made their notes available to patients before the rule kicked in. However, only about a third of patients with access to secure online health portals were using them.

While most doctors who have shared notes with patients think it’s a good idea, the policy has drawbacks. One recent study found that half of doctors reported writing their notes less candidly after they were opened to patients.

Another study, published in February, found that 1 in 10 patients had ever felt offended or judged after reading a note. The study’s lead author, Dr. Leonor Fernandez, of Beth Israel Deaconess Medical Center, said there is a “legacy of certain ways of expressing things in medicine that didn’t really take into account how it reads when you’re a patient.”

“Maybe we can rethink some of these,” she said, citing the phrase “patient admits to drinking two glasses of wine a day” as an example. “Why not just write ‘two glasses of wine a day’?”

UC San Diego Health started phasing in open notes to patients in 2018 and removed a delay in the release of lab results last year. Overall, said Dr. Brian Clay, chief medical information officer, both have been uneventful. “Most patients are agnostic, some are super-jazzed, and a few are distressed or have lots of questions and are communicating with us a lot,” he said.

Some Records Withheld

There are exceptions to the requirement to release patient data, such as psychotherapy notes and notes that could harm a patient or someone else if released.

Dr. David Bell, president of the Society for Adolescent Health and Medicine, believes it’s unclear exactly what qualifies as “substantial harm” to a patient — the standard that must be met for doctors to withhold an adolescent patient’s notes from a parent. Clarity, he said, is especially important to protect teenagers living in states with less restrictive laws on parental access to medical records.

Most electronic medical records are not equipped to segregate sensitive pieces from other information that might be useful for a parent in managing their child’s health, he added.

Some doctors say receiving devastating test results without counseling can traumatize patients. Dr. James Kenealy, an ear, nose and throat doctor in central Massachusetts, said a positive cancer biopsy result for one of his patients was automatically pushed to his portal over the weekend, blindsiding both. “You can give bad news, but if you have a plan and explain, they’re much better off,” he said.

Such incidents aren’t affecting the majority of patients, but they’re not rare, said Dr. Jack Resneck Jr., an American Medical Association board trustee. The AMA is advocating for “tweaks” to the rule, he said, like allowing brief delays in releasing results for a few of the highest-stakes tests, like those diagnosing cancer, and more clarity on whether the harm exception applies to adolescent patients who might face emotional distress if their doctor breached their trust by sharing sensitive information with their parents.

The Office of the National Coordinator for Health Information Technology, the federal agency overseeing the rule, responded in an email that it has heard these concerns, but has also heard from clinicians that patients value receiving this information in a timely fashion, and that patients can decide whether they want to look at results once they receive them or wait until they can review them with their doctor. It added that the rule does not require giving parents access to protected health information if they did not already have that right under HIPAA.

Patient advocate Cynthia Fisher believes there should be no exceptions to immediately releasing results, noting that many patients want and need test results as soon as possible, and that delays can lead to worse health outcomes. Instead of facing long wait times to discuss diagnoses with their doctors, she said, patients can now take their results elsewhere. “We can’t assume the consumer is ignorant and unresourceful,” she said.

In the meantime, hospitals and doctors are finding ways to adapt, and their tactics could have lasting implications for patient knowledge and physician workload. At Massachusetts General Hospital, a guide for patients on how to interpret medical terminology in radiology reports is being developed, said Dr. William Mehan, a neuroradiologist.

An internal survey run after radiology results became immediately available to patients found that some doctors were monitoring their inbox after hours in case results arrived. “Burnout has come up in this conversation,” Mehan said.

Some electronic health records enable doctors to withhold test results at the time they are ordered, said Jodi Daniel, a partner at the law firm Crowell & Moring. Doctors who can do this could ask patients whether they want their results released immediately or if they want their doctor to communicate the result, assuming they meet certain criteria for exceptions under the rule, she said.

Chantal Worzala, a health technology policy consultant, said more is to come. “There will be a lot more conversation about the tools that individuals want and need in order to access and understand their health information,” she said.

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

Patients and Providers Want CDC Opioid Guideline Revoked

By Pat Anson, PNN Editor

The CDC opioid prescribing guideline has failed to reduce addiction and overdoses, significantly worsened the quality of pain care in the United States and should be revoked, according to a large new survey of patients and healthcare providers by Pain News Network. Over two-thirds believe the federal government should not have guidelines for opioid medication and that treatment decisions should be left to patients and doctors.

Nearly 4,200 patients, providers and caretakers participated in PNN’s online survey, which was conducted as the Centers for Disease Control and Prevention prepares to update and possibly expand its controversial 2016 guideline.

Although voluntary and only intended for primary care physicians, the guideline has become the standard of care for pain management in the U.S., with many doctors, insurers, pharmacies and regulators adopting its recommendations as policy, such as limiting opioid doses to no more than 90 morphine milligram equivalents (MME) per day. Some providers have gone even further and stopped prescribing opioids altogether, rather than risk scrutiny from law enforcement or state medical boards.

The stated goal of the guideline was to “improve the safety and effectiveness of pain treatment” and reduce the risk of opioid addiction and overdose. But survey respondents overwhelmingly believe the CDC failed to achieve its goals, and that its recommendations have stigmatized patients and reduced access to pain management. When asked if the CDC guideline has improved the quality of pain care, nearly 97% said no.

“They have done immeasurable damage to chronic intractable pain patients all across America. There have been suicides, people have lost their jobs and their entire quality of life because of them,” one patient told us.

“In 40 years as a pain specialist, I have never seen patients with pain (acute, chronic and cancer) so mistreated, abandoned and unable to access pain treatment as a direct result of the CDC Guidelines,” a doctor wrote.

“Due to inadequate pain control many chronic pain patients, including myself, attempted suicide to get relief of intolerable pain. I wish I had succeeded,” another patient wrote.

HAS THE CDC OPIOID GUIDELINE IMPROVED THE QUALITY OF PAIN CARE?

Overdoses Rising

Except for a brief decline in 2018, opioid overdoses in the U.S. have steadily risen since the CDC guideline was released. When all the data comes in, 2020 is expected to be the deadliest year on record for opioid overdoses, the vast majority involving illicit fentanyl and other street drugs, not pain medication.  

Survey respondents are well aware of that fact. When asked if the CDC guideline has been successful in reducing opioid addiction and overdoses, nearly 92% said no.

“I view the CDC guidelines to be a desperate attempt to control the opioid overdose crisis by curtailing the ability of doctors and pharmacists to provide adequate, legally-prescribed pain relief,” a patient said. “It’s net effect has resulted in the suffering of thousands of chronic pain patients, while doing nothing to curtail the sale and use of illegal street drugs.”

“The guidelines are barbaric! It's not stopped overdoses from drugs being brought in by cartels. It's only harmed patients,” another pain sufferer told us.

“I've know far too many people in my circle of extended friends and family who have died of unintentional overdose. Many had valid pain issues. Had been under the care of a doctor. Then, as these new rules changed the playing field, doctors arbitrarily reduced prescriptions,” a patient said.

HAS THE CDC GUIDELINE REDUCED OPIOID ADDICTION AND OVERDOSES?

The CDC has been aware of these problems since the guideline’s inception. But not until 2019 did the agency acknowledge the guideline was harming patients and pledge to “clarify its recommendations.” Two years later, the CDC is still working on its clarification, which may not be finalized until 2022.

‘Throw the Whole Mess Out’

Most survey respondents – nearly 75% -- believe the entire guideline should be withdrawn or revoked. Less than one in four (23%) believe changes can be made to make the recommendations more effective. And fewer than one percent (0.38%) believe the guideline should be left the way it is.

“These guidelines need to be repealed and government needs to get out of the confidential doctor/patient relationship now and forever,” a patient wrote.

“The CDC guideline is interfering with the ethical practice of medicine between patients and physicians. There is never a ‘one size fits all’ model in medicine, and trying to create one is, and has been, detrimental to the doctor-patient relationship, and more importantly, to quality patient care in an underserved and vulnerable patient population,” a provider wrote.

“These guidelines have done more damage to acute and chronic pain patients than I have ever seen in practice. This is a decision between providers and patients, and federal government needs to stay out of it,” another provider wrote.

WHAT SHOULD BE DONE WITH CDC GUIDELINE?

CDC ‘Didn’t Care’ About Guideline’s Misapplication

The survey found a significant amount of distrust in CDC. Asked if the agency could handle the revision of the guideline in an unbiased, scientific and impartial manner, over 89% said no.

“Throw the whole mess out! Let our doctors decided what works for each patient for gods sake. Before we lose more people. And stop demonizing safe medication and pushing dangerous ones so big pharma can profit even more,” a patient wrote. “We KNOW what's going on here and its disgusting.”

“These guidelines are clearly biased to the point of corruption, and it has caused terrible disruption in the lives of literally millions of patients,” another patient said.

"It is unbelievable that this horrific mistake has not been rectified; the possibility that they are using the same biased, corrupt, incompetent committee to write the updates is purely fraudulent.”

DO YOU TRUST CDC TO REVISE THE GUIDELINE IN AN UNBIASED, SCIENTIFIC MANNER?

“While it is clear the CDC didn't intend the guidelines be used as law, it is also clear they didn't care that the guidelines were being misapplied, misunderstood, misappropriated and maliciously used to further an agenda not to help anyone,” a patient wrote.

Less than 4% of respondents believe the CDC is best qualified to create a federal guideline for opioid prescribing. About 9% would prefer to have the Food and Drug Administration write the guideline. But nearly 68% believe there should be no federal guideline for opioid medication.

“Physicians should be able to manage their patients’ pain without fear of agencies monitoring and implementing guidelines that limit their ability to properly manage and treat and individuals pain. Chronic pain and acute pain is individually subjective and no ONE agency should be able to determine how or what manages an individuals pain,” a provider wrote.

“These guidelines are an unmitigated disaster for the last 5 plus years and those responsible for creating the mess should be held accountable for the damage they created and continue to create. How many suicides? How many overdoses from turning to the ‘street’ for relief from pain? How in hell did the CDC become the authority?” asked one patient.

Nine out of ten patients said their pain levels and quality have life have grown worse since the CDC guideline was released. For further details, click here.

(The PNN survey was conducted online and through social media from March 15 to April 17. A total of 4,185 people in the United States participated, including 3,926 who identified themselves as chronic, acute or intractable pain patients; 92 doctors or healthcare providers; and 167 people who said they were a caretaker, spouse, loved one or friend of a patient. There were no significant differences in responses between the three groups. Thanks to everyone who participated in this valuable survey. To see the full survey findings, click here.)

Feds Warn of Scammers Impersonating DEA Agents

By Pat Anson, PNN Editor

The U.S. Drug Enforcement Administration is once again warning doctors, pharmacists and the public about criminals posing as DEA agents or other law enforcement officers and attempting to extort money from them.

The scammers call the victims, often using caller ID to appear as a legitimate DEA phone number, and threaten arrest and prosecution for violations of federal drug laws unless the victim pays a “fine” over the phone or by wire transfer. Doctors and pharmacists are usually threatened with revocation of their DEA registrations, which allow them to prescribe or dispense opioids and other controlled substances.

A DEA spokesperson told PNN the scam has been going on for years, but the agency has recently seen an uptick in complaints, sometimes hundreds per week.  

“We at headquarters have gotten to the point where we are just inundated with reports of scam calls,” said DEA spokesperson Katherine Pfaff. "And scammers calling us.”

The scammers are now also targeting the general public, according to Pfaff, sometimes claiming that a vehicle intercepted at the border with illegal drugs had been traced back to them.

“No DEA agent would ever contact someone directly like that and insist on payment over the phone or use scare tactics like that. That’s not how we operate,” Pfaff said. “Unfortunately, we have received many reports of people who have actually paid these scammers and lost a lot of money to them.”

The scam tactics continually change, but often share many of the same characteristics. Callers typically use an urgent and aggressive tone, and refuse to speak to anyone other than the intended victim. They demand thousands of dollars via wire transfer or in the form of untraceable gift cards taken over the phone.

Scammers ‘Well Informed’ of DEA Tactics

When calls are made to doctors or pharmacists, the scammers will reference their DEA registration numbers and state license numbers. They also might claim that patients have made accusations against them.

The scammers appear to be aware that many practitioners are already under scrutiny by the DEA for their opioid prescribing practices. In recent years, the DEA has raided and prosecuted hundreds of doctors for alleged infractions. The cases often end with doctors paying a fine rather than face hefty legal bills defending themselves in court.

“The scammers are well enough informed of the tactics DEA is employing against controlled-medication prescribers to be able to replicate them,” says attorney Michael Barnes, who has called for an end to “indiscriminate raids” on doctors.  

“Like the DEA, the impersonators are claiming to have evidence of wrongdoing against licensed health care providers, threatening to revoke DEA registrations, and demanding enormous settlements to make the nightmare go away. The only thing that is missing is the office raid.”

Impersonating a federal agent is a violation of federal law. The DEA urges anyone receiving a  call from a scammer claiming to be with the DEA to report it online to the agency’s Diversion Control Division or by calling 877-792-2873.