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.  

Back Pain? Bum Knee? Be Prepared to Wait for Physical Therapy

By Mark Kreidler, KFF Health News

At no point along his three-year path to earning a degree in physical therapy has Matthew Lee worried about getting a job.

Being able to make a living off that degree? That’s a different question — and the answer is affecting the supply of physical therapists across the nation: The cost of getting trained is out of proportion to the pay.

“There’s definitely a shortage of PTs. The jobs are there,” said Lee, a student at California State University-Sacramento who is on track to receive his degree in May. “But you may be starting out at $80,000 while carrying up to $200,000 in student debt. It’s a lot to consider.”

As many patients seeking an appointment can attest, the nationwide shortage of PTs is real. According to survey data collected by the American Physical Therapy Association, the job vacancy rate for therapists in outpatient settings last year was 17%.

Wait times are generally long across the nation, as patients tell of waiting weeks or even months for appointments while dealing with ongoing pain or post-surgical rehab. But the crunch is particularly acute in rural areas and places with a high cost of living, like California, which has a lower ratio of therapists to residents — just 57 per 100,000, compared with the national ratio of 72 per 100,000, according to the association.

The reasons are multifold. The industry hasn’t recovered from the mass defection of physical therapists who fled as practices closed during the pandemic. In 2021 alone, more than 22,000 PTs — almost a tenth of the workforce — left their jobs, according to a report by the health data analytics firm Definitive Healthcare.

Growing Demand for PT

And just as baby boomers age into a period of heavy use of physical therapy, and covid-delayed procedures like knee and hip replacements are finally scheduled, the economics of physical therapy are shifting. Medicare, whose members make up a significant percentage of many PT practices’ clients, has cut reimbursement rates for four years straight, and the encroachment of private equity firms — with their bottom-line orientation — means many practices aren’t staffing adequately.

According to APTA, 10 companies, including publicly held and private equity-backed firms, now control 20% of the physical therapy market.

“What used to be small practices are often being bought up by larger corporate entities, and those corporate entities push productivity and become less satisfying places to work,” said James Gordon, chair of the Division of Biokinesiology and Physical Therapy at the University of Southern California.

There’s a shortage of physical therapists in all settings, including hospitals, clinics, and nursing homes, and it’s likely to continue for the foreseeable future, said Justin Moore, chief executive of the physical therapy association. “Not only do we have to catch up on those shortages, but there are great indicators of increasing demand for physical therapy,” he said.

The association is trying to reduce turnover among therapists, and is lobbying Congress to stop cutting Medicare reimbursement rates. The Centers for Medicare & Medicaid Services plans a 3.4% reduction for 2024 to a key metric that governs pay for physical therapy and other health care services. According to the association, that would bring the cuts to a total of 9% over four years.

Several universities, meanwhile, have ramped up their programs — some by offering virtual classes, a new approach for such a hands-on field — to boost the number of graduates in the coming years.

“But programs can’t just grow overnight,” said Sharon Gorman, interim chair of the physical therapy program at Oakland-based Samuel Merritt University, which focuses on training health care professionals. “Our doctoral accreditation process is very thorough. I have to prove I have the space, the equipment, the clinical sites, the faculty to show that I’m not just trying to take in more tuition dollars.”

Rising Cost of PT Education

All of this also comes at a time when the cost of obtaining a physical therapy doctorate, which typically takes three years of graduate work and is required to practice, is skyrocketing. Student debt has become a major issue, and salaries often aren’t enough to keep therapists in the field.

According to the APTA’s most recent published data, median annual wages range from $88,000 to $101,500. The association said wages either met or fell behind the rate of inflation between 2016 and 2021 in most regions.

A project underway at the University of Iowa aims to give PT students more transparency about tuition and other costs across programs. According to an association report from 2020, at least 80% of recent physical therapy graduates carried educational debt averaging roughly $142,000.

Gordon said USC, in Los Angeles’ urban core, has three PT clinics and 66 therapists on campus, several of whom graduated from the school’s program. “But even with that, it’s a challenge,” he said. “It’s not just hard to find people, but people don’t stay, and the most obvious reason is that they don’t get paid enough relative to the cost of living in this area.”

Fewer therapists plus growing demand equals long waits. When Susan Jones, a Davis, California, resident, experienced pain in her back and neck after slipping on a wet floor in early 2020, she went to her doctor and was referred for physical therapy. About two months later, she said, she finally got an appointment at an outpatient clinic.

“It was almost like the referral got lost. I was going back and forth, asking, ‘What’s going on?’” said Jones, 57. Once scheduled, her first appointment felt rushed, she said, with the therapist saying he could not identify an issue despite her ongoing pain. After one more session, Jones paid out-of-pocket to see a chiropractor. She said she’d be hesitant to try for a physical therapy referral in the future, in part because of the wait.

Universities and PT programs graduate about 12,000 therapists a year, Moore said, and representatives of several schools told KFF Health News they’re studying whether and how to expand. In 2018, USC added a hybrid model in which students learn mostly online, then travel to campus twice a semester for about a week at a time for hands-on instruction and practice.

That bumped USC’s capacity from 100 students a year to 150, and Gordon said many of the hybrid students’ professional skills are indistinguishable from those of students on campus full time.

Natalia Barajas received her PT doctorate from USC last year and was recently hired at a clinic in nearby Norwalk, with a salary of $95,000, a signing bonus, and the opportunity to earn more in incentives.

She’s also managing a lot of debt. Three years of tuition for the USC physical therapy program comes to more than $211,000, and Barajas said she owes $170,000 in student loans.

“If it were about money alone, I probably would have shifted to something else a while ago,” Barajas said. “I’m OK with my salary. I chose to do this. But it might not be the perfect situation for everybody.”

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

Doctor Bison’s Fables: The Crowded Exam Room

By Pat Anson, PNN Editor

Dr. Mark Ibsen is a Montana physician whose license was suspended in 2016 by the state medical board for “overprescribing” opioids and poor record keeping. A state judge later reversed the suspension, ruling the medical board made numerous errors.

Ibsen has since become a strong proponent of medical marijuana and a leading advocate in the pain community. He’s published a new book, “Dr. Bison’s Fables,” using animals as lead characters in a series of stories to convey how many pain patients in the U.S. lack proper treatment and some are in crisis.

This interview with Ibsen has been edited for content and clarity.

PNN: Who is “Doctor Bison’s Fables” intended for and what is your goal? What is the message you're trying to get across?

Dr. Mark Ibsen

IBSEN: I'm not really in the book selling business. I'm in the restoration of the sacred physician-patient relationship business. But all of my screaming from the rooftops about it for the last 12 years has made little progress.  

I was talking to the publisher and he was saying if you write a book about what's going on in medicine today, the pain crisis and catastrophe of it, you'll have a readership of 50,000. If you write a book that talks about the dynamics of what's going on, and put it in the form of a parable or a fable that has a bigger meaning to it, your audience will expand.

When this approach was suggested to me, I rejected it completely out of hand. I said I just want to tell what's going on because the house is on fire. But I slowly came to look at this idea as maybe he's onto something. Maybe Aesop's Fables had some good things to say, maybe the Brothers Grimm had some good things to say. So I thought, okay, let's add some folksiness to this. Give it a Burl Ives approach.

PNN: When you tell your fables in the book, animals are the key characters. Why did you choose them?

IBSEN: The animals are the protagonists. I chose Dr. Bison because of the bullheadedness of the character. As you can see on the book cover, he's examining this cute little otter on the exam table. And the weasel guy with the clipboard is scowling at him and evaluating how he's doing his job and if he's doing it effectively or quickly enough.

The weasel is like an interloper in the exam room, which has been my persistent complaint. We have too many guests in the exam room that have a vote into what's going on between the doctor and the patient. We have an insurance bureaucrat deciding what you can or can't prescribe, and a pharmacist deciding if the prescription is legitimate.

Then there's a law enforcement officer who's looking at whether a crime is being committed. Then there's a DEA agent who may or may not have a college education, who's looking at patterns and matrices. Is Dr. Bison prescribing more than other doctors?

Then there's legislators, like the legislators in the state of Ohio that legislated exactly how much I could get for the pain in my chest after it was split open during heart bypass surgery at the Cleveland Clinic.

So it's really crowded in the exam room now.

PNN: You want to get across the point that you can't treat all patients the same way. Everyone is different. How do you communicate that in your fable scenario?

IBSEN: I think it's basically species dependent. By that I mean that different species have different personal attributes. A mouse is going to attack a problem much different than a bison would. Or an herbivore will attack a problem more than a carnivore will.

I guess you could call it a menagerie. There's a bison and a cougar. There's a possum. There's a wise llama. There's a viper in the chapter about breeding resentment. There's a coyote, the trickster who has a lawyer's briefcase and there's a crow. And then the elk. Elk handle their conflicts by keeping the herd intact, surrounding the weakest member so the wolves can't get to them.

My goal is to is to make this seemingly light and then develop it. Story development pulls them in and readers finish the story. And then they're left with curiosity about the pain crisis, rather than revulsion or rejection or resistance or argumentation.

PNN: Take us to the epilogue and the message that you really want to get across to the reader.

IBSEN:  I guess I would say that I didn't leave medicine, medicine left me. I don't want to project some righteous indignation about it. I'm sad about it more than anything else. I don't think this is limited just to the patient-physician relationship. I think it's a cultural phenomenon. And it's just manifested in medicine in this way.

We now have patients that cannot tell their doctor the truth. It's sort of like a teenager who has to lie to their parents. It's like a patriarchal system. The patriarchal system works if the patriarch supports the people in the system. But these days, if you admit that there's a family history of alcoholism, then suddenly you're not a candidate for opiates.

Or this doctor friend of mine who was recently suspended, he's a residency mate of mine. He had a mother and a daughter, both in chronic pain. I think they lived together and one was on hydrocodone and the other on oxycodone. And it turns out their medications may have gotten mixed up. They had a urinalysis and it looked bad.

But if you live in the same household, then maybe you can get your pills mixed up. I mean, you could have that chance. But do you fire somebody for having hydrocodone in their system? In my training, a lab result is something that you respond to, not something you react to. The first thing you do is you repeat the lab test. If you see something that's completely out of the ordinary, then you have to inquire about it.

But in this system, you have to fire the patient, even when there's no evidence that doing urine drug screens make any difference at all about diversion or patient care or anything. Nobody's done a placebo, double-blind controlled study about that.

I'm now seeing some pain refugees from Billings. The pain doctor there retired and the new guy came in slashing everybody’s dose and then he left. All these patients are trying to recover and none of them are oriented towards taking cannabis because they know that if they found cannabis in their urine that they would be fired. Somebody somewhere will say if you have cannabis in your urine, it's obvious that you're selling your pain pills in order to buy your cannabis. That is not obvious to me. Not even remotely

There’s a huge amount of gaslighting going on between the system and patients, that doctors are willing participants in. I mean, my younger colleagues have loans to pay off, so they are not risk takers. Right now, I am quite a risk taker. Because everything's gone. I don't have anything left.

I would say that in medicine today, the wheels are coming off and maybe they need to all come off. It doesn't operate in the same mentor-apprenticeship relationship that I was trained in. I don't know if I would last in medical training today.

I think that the internet has both good and bad things about it. And the good thing is that patients research their ailments or their symptoms and they come in with that. They come in with a differential diagnosis already. And I get to hear that and respond to it.

The great thing about that is what I call the alignment effect. If a patient comes to me and wants to do something that they read about and it's not going to kill them, if I say yes and it works for them, then they're going to be really persistent about following that therapy because it was their idea. Right? If it fails and they come back to me, then they're willing to listen to my point of view on it. And that builds trust.

If only the hospital administrator, pharmacist, insurance bureaucrat and legislator would trust our medical expertise. I think we're in a period of time where expertise is not thriving. Failing to use the expertise of our specialists is really putting us in a bad way, not only in medicine, but in the entire culture.

PNN: Thank you, Dr. Ibsen.

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. 

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.)

VALUE Study Seeks Patient Perspective on Long-Term Opioid Use

By Pat Anson, PNN Editor

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

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

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

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

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

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

Long-Term Studies Lacking

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

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

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

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

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

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

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

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

‘Partial Fill’ Rule for Pharmacies Would Harm Pain Patients

By Pat Anson, PNN Editor

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

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

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

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

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

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

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

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

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

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

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

New Hampshire Law Protects Patient Access to Rx Opioids

By Pat Anson PNN Editor

Patient advocates around the country are looking with keen interest at a new law in New Hampshire that stipulates chronic pain patients should have access to opioid medication if it improves their physical function and quality of life.

HB 1639 was signed into law by Gov. Chris Sununu late last month. It amends state law to add some key provisions that protect the rights of both pain patients and their doctors.

Under the law, physicians and pharmacists are required to consider the “individualized needs” of pain patients, treat them with dignity, and ensure that they are “not unduly denied the medications needed to treat their conditions."   

Since the CDC’s controversial opioid prescribing guideline was released in 2016, dozens of states have adopted laws and policies that restrict the prescribing of opioids to the CDC’s recommended daily limit of 90 MME (Morphine Milligram Equivalent). Doctors who exceed that dose often come under the scrutiny of law enforcement and some pharmacists have stopped filling their prescriptions. As a result, millions of patients have been tapered to lower doses or cut off from opioids altogether, causing withdrawal, poorly treated pain and increased disability.  

Under the New Hampshire law, “all decisions” regarding treatment are to be made by the treating practitioner, who is required to treat chronic pain “without fear of reprimand or discipline.” Doctors in the state are also allowed to exceed the MME limit, provided the dose is “the lowest amount necessary to control pain” and there are no signs of a patient abusing their opioid medication.

“Ordering, prescribing, dispensing, administering, or paying for controlled substances, including opioid analgesics, shall not in any way be pre-determined by specific Morphine Milligram Equivalent (MME) guidelines.

For those patients who experience chronic illness or injury and resulting chronic pain who are on a managed and monitored regimen of opioid analgesic treatment and have increased functionality and quality of life as a result of said treatment, treatment shall be continued if there remains no indication of misuse or diversion.”

Importantly, the new law broadly defines chronic pain to include any pain that is intractable, high impact, episodic or relapsing — meaning the pain doesn’t have to be continuous.

“This innovative new law is historic in that it states that controlled substances, including opioids, can't be pre-determined by specific morphine milligram equivalents,” says Dr. Forest Tennant, a retired pain management specialist in California. “The law specifically states that patients can't be unduly denied the medications needed to treat their conditions. This point can't be over-emphasized.”

Another provision of the law requires that a diagnosis of chronic pain made by a physician anywhere in the U.S. that is supported by written documentation should be considered adequate proof that a patient has chronic pain. That part of the law is intended to make it easier for out-of-state pain patients to get treatment in New Hampshire.      

The law is the result of two years of lobbying by a small group of patient advocates known as the New Hampshire Pain Collaborative, which worked closely with state Sens. John Reagan and Tom Sherman in drafting the legislation. Key provisions eventually became part of the healthcare omnibus bill that won bipartisan support in the New Hampshire Senate and House of Representatives, and was signed into law by Governor Sununu.

Bill Murphy, a member of the Pain Collaborative, made this video to help other patients and advocates create similar legislation in their states:

“I would like to say a big congrats to all who worked on that project! Isn't it amazing what you can accomplish when you all work together?” said Donna Corley, director of the Arachnoiditis Society for Awareness and Prevention (ASAP), a patient advocacy group.

“Many patients aren't aware of just how important this bill truly is. This should have been enacted and should be implemented in every state in the United States to help secure safe, and reliable pain care treatment for all patients who suffer chronic pain in the United States. To be able to have diagnoses from other states and it be accepted by your doctor is phenomenal as well.”

“All concerned parties need to salute and follow suit of the New Hampshire law,” Dr. Tennant said in an email to PNN. “The tragedy of the recent over-reach to control opioid abuse, diversion, and overdoses has caused immense suffering for legitimate, chronic pain patients, an epidemic of suicides among deprived pain patients, and the forced retirement of many worthy physicians (including yours truly). All this ugliness would have been prevented with the New Hampshire law.”

According to the CDC, New Hampshire physicians wrote 46.1 opioid prescriptions for every 100 persons in 2018. That’s well below that national average of 51.4 prescriptions. That same year, 412 people died of drug overdoses in New Hampshire, the vast majority of them involving synthetic opioids such as illicit fentanyl and other street drugs.  Only 43 of those 412 deaths involved a prescription opioid.  

CDC Seeking Comment from Pain ‘Stakeholders’

By Roger Chriss, PNN Columnist

The Centers for Disease Control and Prevention has made an unusual request for public comment about the use of opioids and the management of acute and chronic pain.

In a notice published last week in the Federal Register, the CDC said it wants to “obtain comment concerning perspectives on and experiences with pain and pain management, including but not limited to the benefits and harms of opioid use.”

Comments are being sought from patients with chronic or acute short-term pain, their family members, caretakers and healthcare providers – what the agency bureaucratically calls “stakeholders.”

“Public comment will help CDC's understanding of stakeholders' values and preferences regarding pain management and will complement CDC's ongoing work assessing the need for updating or expanding the CDC Guideline for Prescribing Opioids for Chronic Pain,” the agency said.

To leave a comment in the Federal Register, click here.

The CDC doesn’t always seek comments from the public. The agency’s 2016 opioid guideline was initially drawn up without any public hearings or input from patients. It was only after a public outcry that hearings were held and comments were sought in the Federal Register. Over 4,000 people responded, most of them opposing the guideline.

Since then, the federal government has continued to get an earful from patients, providers, medical organizations and various panels about how harmful the guideline has been for pain sufferers and why a “one-size-fits-all approach” to pain management doesn’t work.

For instance, in May 2019, the Pain Management Best Practices Inter-Agency Task Force issued a long-awaited report on pain management, emphasizing the “importance of individualized patient-centered care in the diagnosis and treatment of acute and chronic pain.”

In December 2019, the National Academies of Sciences, Engineering, and Medicine issued another report outlining “a framework for prescribers and others to develop their own plans for acute pain.”

At present, the National Institute of Health’s HEAL Initiative is developing web services for chronic pain management, along with working on research to predict pain.

Moreover, physicians like Dr. Stefan Kertesz have written about the need for nuance in pain management. And pain psychologist Dr. Beth Darnall has written about the need for patient-centeredness in chronic pain, while also working on clinical best practices at the Patient-Centered Outcomes Research Institute.  

Patients themselves have drawn attention to the problem, from TED talks by advocates like Kate Nicholson to nationwide rallies by the group Don’t Punish Pain.

Nearly one year ago, the CDC finally recognized that the opioid guideline was being widely misapplied and issued a long-overdue “clarification” urging policymakers to stop treating its voluntary recommendations as law.

The American Medical Association said it was about time.

“The guidelines have been treated as hard and fast rules, leaving physicians unable to offer the best care for their patients,” said AMA President Patrice Harris, MD. “The CDC’s clarification underscores that patients with acute or chronic pain can benefit from taking prescription opioid analgesics at doses that may be greater than the guidelines or thresholds put forward by federal agencies, state governments, health insurance companies, pharmacy chains, pharmacy benefit managers and other advisory or regulatory bodies.”

Patients and providers have been sharing their perspective and experiences for years, with little evidence to suggest that the CDC has been paying much attention. Not a word of the guideline has changed, although the agency is working on an “update” that may be done in late 2021.

As the number of pain stakeholders continues to rise and their care is complicated by COVID-19, the CDC needs to look seriously at the many years’ worth of clearly expressed “values and preferences.” If the CDC needs even more information, so be it. But it’s hard to figure out how much more clearly all the stakeholders can speak.

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

The Other Opioid Crisis: Patient Abandonment and Denial of Treatment

By Georgia Carroll, Guest Columnist 

I am a patient advocate and pain sufferer. I have the usual pains associated with rheumatoid arthritis, a bad knee and a few bulging lumbar discs. But my personal story is nothing compared to what most of the patients I work with are going through. 

I represent only a small fraction of the tens of millions of patients across the U.S. who have been abandoned by their doctors and denied treatment for the pain caused by diseases, injuries and mental health conditions. They are the unintended victims of efforts to curb opioid overdose deaths, even though studies show less than 2% of overdoses involve prescription opiates written for the deceased.  

Leaving these patients without medical care is inhumane and only exacerbates the opioid crisis, forcing some to turn to the street for relief. The victims of this abuse have been crying out for help since before 2013 and nothing has been done. They have been left to suffer, deteriorate and die. Lack of action to protect these patients has elevated the opioid crisis to a self-fulfilling phenomenon.  

Frankly, I was ignorant of how bad the situation was until a few months ago, when our doctor was arrested. For the last five years, he and I have been focused on teaching patients to integrate alternative therapies into their treatment regimens to help them reduce opioid dosages and frequencies.   

Now it is in my backyard and we are the victims, because no one gave a damn about 50 million suffering souls.

We are not drug addicts looking for the next high. We are medical patients who need doctors to responsibly prescribe the opiates we need for relief.

GEORGIA CARROLL

None of the legislation passed in recent years does anything to protect doctors from ill-conceived prosecution or their patients from being abandoned. The Department of Justice, DEA and local law enforcement have not been able to effectively diminish the availability of street drugs, much less stop their distribution. So they misinterpret and pervert the CDC opioid guideline to make their own rules for investigation and prosecution of the “low hanging fruit" of prescribers diligently treating their patients.

Physician intimidation is unacceptable. Patient abandonment is unacceptable.  

A case in point: The doctor of most of the patients for whom I advocate was arrested and the clinic closed without warning last November. The staff were threatened and intimidated, and medical records and computers confiscated, including the external hard drive backup.  In a flash, the doors were locked and 7,000 patients were abandoned with no recourse and no source for prescription refills, even blood pressure and insulin, much less chronic pain, panic attacks or depression. 

It took 10 days for the local district attorney to return the backup drive for patient records. It was blank, completely scrubbed.  We asked the DA to make medical records available to the patients so they could engage new physicians. They refused. Not their responsibility. "Clinic should have had backup," we were told. 

On day 73, after many letters from patients and doctors requesting the files and two street demonstrations, they finally agreed to download individual patient's records to a disc, on request, to be picked up at the DA's office in person or by a representative. 

Doctors and medical facilities across the country are refusing to write prescriptions for opiates to anyone, for fear of suffering a similar fate.  Instead, they are pushing patients to expensive and repetitive injections or surgery.  

Our doctor has been "flagged" by other local doctors, who refuse to even see a patient with his name on the medical files or prescription, even though he is highly respected by most of them. Call it "Not Me Next Syndrome."

The hundreds of patients I work with have now been without effective pain and mental health disorder medications for over 120 days, with no relief in sight.  They have been through the agony of withdrawals unassisted. What recourse do they have?  Continued debilitating suffering, accelerated physical and mental health decline, street drugs and the ultimate relief of suicide.  

These are the calls I receive almost daily. How would you advise them?  How would you manage your symptoms or those of a loved one?  How would you cope?  

Several states have begun to introduce bills to protect doctors from prosecution for doing their job and patients from being cut off cold turkey from their prescribed opiates. But these individual state efforts are inadequate given the number of patients across the country already affected. Patient abandonment and denial of care is now a national public health epidemic and demands immediate, emergency action. 

Georgia Carroll lives in Texas.

Pain News Network invites other readers to share their stories with us. Send them to:  editor@PainNewsNetwork.org.