The Unintended Consequences of the CDC Opioid Guideline

By Dr. Lynn Webster, PNN Columnist

Jack Schwartz (a pseudonym) is a child of Holocaust survivors. As a small boy, he was traumatized by observing his older brother become addicted to heroin. He also developed a substance use disorder of his own that he believes was due, in part, to childhood PTSD.

A 64-year-old psychotherapist, Schwartz has been in chronic pain since a 1996 car accident injured his neck. Although he has a history of substance use disorder, he has used opioids to manage his pain for the past several years.

His personal physician, who retired at the end of 2020, wrote a letter stating Schwartz has been prescribed Norco (a combination of acetaminophen and hydrocodone), has been compliant, and has shown no signs of abuse for the previous four years. The retiring doctor hoped Schwartz would be able to find someone to continue prescribing his Norco.

Schwartz has not yet found a new physician. In the meantime, his insurance company notified him that they would not pay for his medication, citing the CDC’s opioid prescribing guideline and their own opioid policy, which states that "narcotics are not the treatment of choice for chronic nonmalignant pain."

Schwartz contacted me after reading a PNN column I wrote, "Ironic Partners: Suicide Prevention and Pain Awareness Month." He said he was suicidal and asked me for advice. We agreed that sharing his story might help others in similar positions.

Who Should Write Clinical Guidelines?

Regrettably, Schwartz’s situation is not uncommon. Many insurers and regulators have adopted rigid policies that cite the CDC’s voluntary guideline as if it was the standard of care. The CDC has admitted its guideline is being misapplied and is working on an update, but so far the agency has done little to correct the problem.

In fact, the CDC has gone even further than the guideline, producing a fact sheet for physicians, “Nonopioid Treatments for Chronic Pain,” in which it recommends alternative medications for common chronic pain conditions including migraine, low back pain, osteoarthritis, fibromyalgia, and neuropathic pain.

Why is the CDC making medical treatment recommendations?

Cardiologists and heart surgeons should develop recommendations for managing heart disease. Endocrinologists should offer recommendations for managing diabetes. Infectious disease specialists should make recommendations for managing infections. Addiction specialists should provide recommendations for treating addiction. And it is pain specialists who should develop treatment guidelines for treating pain.

The way it should work is this: Professional organizations representing medical specialties develop treatment guidelines. Whenever possible, input should be solicited from patient stakeholders. The role of government organizations such as the National Institutes of Health, FDA, CDC, and DEA should be to provide data and resources to these groups, so they can initiate and revise treatment guidelines as the science evolves.

Specialists should lead the way to ensure patient care is clinically driven and patient-centered. Non-clinicians, such as government officials — even if they have medical degrees— should not be making treatment decisions or creating guidelines for specialists and their patients.

Walking Back the CDC Guideline

In my view, it was a mistake for the CDC to release the guideline in 2016. Before it was published, I predicted people in pain would suffer and that the guideline would not reduce the number of opioid-related overdose deaths. Unfortunately, I was correct.

Many providers, patients and their loved ones have urged the CDC to revise or withdraw the guideline. The American Medical Association has urged the CDC to make "significant revisions."  

The three co-authors of the guideline, Deborah Dowell, MD, Tamara Haegerich, PhD, and Roger Chou, MD, even wrote a commentary for The New England Journal of Medicine in 2019 acknowledging that their recommendations were being misapplied and were “likely to result in harm to patients.”

The admission that the CDC guideline was harmful was long overdue. Now the question of how the recommendations should be changed must be addressed. Hopefully, the CDC will consider input from people who have been harmed the most by the guideline and will revise their recommendations accordingly.

Jack Schwartz continues to struggle with intractable pain and suicidal feelings. He, and millions of people like him, need for your opinion and your provider’s perspective, to be heard. Maybe then more rational decisions will be made regarding the use of opioids for the treatment of pain.

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

Help Us End the Suffering of Chronic Pain Patients

By Anne Fuqua, Guest Columnist

In 2014, a good friend of mine suffered a heart attack after his opioid pain medications were stopped abruptly. This was despite the fact his records showed that he was a responsible and compliant patient who worked full-time.

Following his death, I started logging the deaths I became aware of on a spreadsheet. Initially, this was just my version of a memorial. I have pain too, and at times wondered if I’m going to wind up on this same memorial.

Every month for the past six years, I have had to add at least one more name to that list, sometimes multiple names. I knew many of these patients and considered them to be my friends.

Some had no quality of life and chose to end their suffering. Some fought to live with all the strength they could muster, but fell to heart attacks, strokes and ruptured aneurysms that occurred after their medication was involuntarily tapered, stopped abruptly or during periods of severe uncontrolled pain. 

For others, the cascade of physiologic changes that help our bodies respond to stress can become harmful in themselves if left unchecked, causing effects that may shorten life even if the person does not suffer one specific event like a heart attack or stroke.

ANNE FUQUA

Still others were desperate to live but also desperate to get relief. They went to the illicit drug market when they failed to get the surgery, physical therapy or medication that they felt could improve their quality of life. 

There is a name for abandoned pain patients, left to fend for themselves. Dr. Steve Passik coined the term “opioid refugee” in 2012. Tragically, some of these opioid refugees have died in their quest for relief. They sought relief that would allow them to get restful sleep, enjoy quality time with loved ones, and give them the ability to fulfill responsibilities to their family and society.

CSI Opiods Survey

In 2016, I was fortunate enough to become friends with Dr. Stefan Kertesz, a physician I respect immensely. Dr. Kertesz and his colleague, Dr. Allyson Varley, assembled a team of some of the most respected healthcare providers and thought leaders in the field to advise and support their work. Their goal is to understand what exactly happens when a person with chronic pain dies by suicide. 

After over 2 years of tireless efforts to obtain funding, they have begun a pilot project, a survey of people who have lost someone to suicide. I am helping them understand how to reach out to the people who have lost loved ones. The project has the support of the Department of Medicine at University of Alabama at Birmingham. 

If you would like to know more about Drs. Varley or Kertesz, I would encourage you to Google them so you can see for yourself the quality of their work and their dedication to underserved populations. You may also want to check out Dr. Kertesz’s Tedx Birmingham talk on suicides in the pain community.

Our initial work is a pilot study, We wish to learn how many surviving family members and close friends are willing to come forward and complete a survey after losing a loved one to suicide. For now, we are examining suicides where the patient who died had experienced a change in their opioid medication prior to their death, whether it was decreased, increased or stopped. 

If you have lost a loved one, there are two ways that you can participate. We have a brief online survey you can complete that’s entirely confidential. You can take the survey by clicking here or on the banner below. If you are unable to complete this survey all at once, click “save and return later” and you will be able to save your responses and return to the point you left off at a later time. 

If you would feel more comfortable speaking with someone, you can call toll-free (866) 283-7223. There is no payment for doing the survey. Official study information, approved by a University Institutional Review Board, is online at the survey website.

We may eventually get funding to study other types of deaths. We are asking anyone who has lost a loved one to suicide following a change in opioid dose to consider responding to our survey. If enough people do come forward, it will help to make the case that these terrible losses need to be studied closely, rather than ignored.

I recognize this initial effort has a narrow focus. There are many grieving families who want their loved one’s death to be counted even if it was not a suicide. The way the survey is set up, if you report that the person you lost did not die by suicide, it is going to ask for your contact information. You can provide the research team with your contact information so you can be notified about future studies. 

I still keep my own list of deaths as I learn about them, my memorial. It’s important to know that my list is private. Dr. Kertesz and Dr. Varley do not take names off my list. That’s because university research can only be done with consent. If you have a name for my list, whether they died by suicide or not, contact me and I will add your friend or loved one. I make statistics about the deaths -- but no names -- available to policymakers and patients involved with advocacy work. The list itself will not be made public. 

If you are like me, you are apprehensive about what will happen next. I think most of us are exhausted from the fight for better pain care and desperate for change. Change cannot come soon enough when you are the one who is suffering. This is the first step towards ending needless suffering and loss of life.

Anne Fuqua is from Birmingham, Alabama. She lives with her cat Gabby and has primary generalized dystonia and arachnoiditis.

Most Americans Know Little About Opioid Medication

By Pat Anson, PNN Editor

Before the Covid-19 pandemic dominated the nation’s headlines, the opioid crisis was widely considered the most serious public health threat in the United States, with much of the news coverage and public attitudes focused on the role played by opioid pain medication.

A 2017 Pew Research survey found that 3 out of 4 Americans viewed prescription drug abuse as a serious public health problem. Another survey that year found that nearly half of Americans had a family member or close friend addicted to drugs.

It turns out most Americans know surprisingly little about opioid medication. A recent survey of over 1,000 U.S. adults by DrFirst, a healthcare technology company, found a significant lack of understanding about opioids.      

While more than three-quarters (76%) of respondents think they know whether or not they were prescribed an opioid, only 22% could correctly identify seven commonly prescribed opioid painkillers. The following medications were misidentified as not containing opioids:

• Tramadol (44%)

• Hydromorphone (32%)

• Morphine sulfate (27%)

• Methadone (27%)

• Hydrocodone (23%)

• Fentanyl (22%)

• Oxycodone (15%)

Many respondents also misidentified non-opioid medications. Nearly three quarters (73%) thought oxytocin was an opioid (apparently confusing it with oxycodone), even though it’s a hormone that helps women bond with their newborn babies.

Other medications that were often misidentified as opioids:    

• Oxymetolazine (56%)

• Trazodone (46%)

• Omeprazole (33%)

• Hydrocortisone (31%)

• Hyaluronic acid (23%)

“American consumers have some significant and dangerous misunderstandings about which medicines contain opioids,” said Colin Banas, MD, vice-president of clinical products for DrFirst. “This is concerning because patients need to know if they are prescribed an opioid so they can use and store it safely. It should be a wake-up call to physicians and pharmacists, who should not assume their patients know this information.”

One out of five survey respondents said they had been prescribed an opioid in the past year, but 21% of them said they didn’t get the prescription filled.

Over three-quarters of those who did get their prescriptions filled did not keep their opioids in a locked cabinet, as some safety experts recommend. Most kept the drugs within easy reach.

• In a locked cabinet (23%)

• On a nightstand table (14%)

• Kitchen table (13%)

• Bathroom cabinet (13%)

• Purse or backpack (10%)

• Bathroom counter (10%)

The DrFirst survey of 1,002 American adults was conducted online by Propeller Insights from June 16 to June 19, 2020.

Chronic Pain Patients ‘Hanging on by a Thread’ During Coronavirus Lockdown

By Pat Anson, PNN Editor

People with chronic pain and chronic illness are staying at home, practicing social distancing and wearing masks to protect themselves from the coronavirus. But after weeks of isolation, many chronically ill patients are feeling anxious and lonely, and worried about issues that healthy people are less concerned about, like losing access to medication and healthcare.

“Some medications have been unavailable or on back order. Doctors have been unavailable; everything has been unavailable. I'm hanging on by a thread,” one patient told us.  

“It’s very difficult for a single, senior person living alone. Can go days without talking or seeing anyone. I suffer with depression anyway, but this has really increased it so much. It’s scary to think that people in this group could be sick or dead for days before being found. It’s incredibly lonely,” another person said.

“It has only exacerbated my anxiety and pain to a breaking point. I don’t know how long before I completely break down mentally,” said another.

“Not only do I worry about running out of medication, but each time I have to go to the pharmacy for various medications, I am exposing myself to others which could cause me to get the virus,” a patient said.

“I am amazed at how many people just blow off social distancing and even the seriousness of coronavirus itself,” another person said. “On the other hand, I've been heartened by the amazing compassion by others for those who cannot go out, are front line workers, and for those who have the virus.” 

Those are some of the responses we received in an online survey of 2,221 people with chronic pain or chronic illness conducted by Pain News Network, the International Pain Foundation and the Chronic Pain Association of Canada from April 6-20. The vast majority of respondents live in the United States or Canada.

Over half (58%) say they are extremely or very worried about the coronavirus, while less than 5% are not worried and believe the crisis is overblown.

The vast majority report they are self-isolating at home or under quarantine (89%), practicing social distancing (98%) and wearing protective gear like masks (73%).

There’s good reason for their caution. One in four are age 65 or older, and over half (57%) have been diagnosed with a weakened immune system. Both groups are at high risk for severe symptoms and death if they become infected with COVID-19.

HOW WORRIED ARE YOU ABOUT THE CORONAVIRUS?

“Severe untreated pain has demolished my immunity; it shows on a blood test. I'm bedridden in assisted living and I am severely immuno-compromised,” one patient told us. “I am supposed to have a biopsy, they think I have uterine cancer, but I won't get treatment because I can't have pain meds. Everyone in nursing homes is vulnerable.” 

“I’ve had COVID symptoms since March 16 and still unable to get tested. My greatest fear is whether or not it compromised my immune system even more, and that I might not be able to return to work part time when this is over,” another patient said. “Since I live alone, disability is not enough to cover my payments so I will be at risk for losing my home.”

“If I get this virus, it’s a death sentence. So I stay worried, my sleep is compromised, and my pain levels are higher,” said another.

What specifically are people worried about?  It runs the gamut from from financial problems to running out of food to not knowing when the crisis will end. Their top concern is a loved one catching the virus.

What Do You Worry About?

• 71% A loved one becoming infected

• 69% Going to a hospital or doctor’s office

• 67% Catching the virus

• 64% Not knowing when this will end

• 62% Losing access to medications

• 50% Not being able to see family and friends

• 49% Not being able to see my doctor

• 49% Visiting locations where I might become infected

• 42% Mental health

• 42% Running out of food or essential supplies

• 37% Financial problems

One reason financial problems may rank low as a concern is that nearly 80 percent of respondents are retired, disabled or were no longer working. Their financial situation hasn’t changed much due to the lockdown. About 15% are still working, while only 5% have been furloughed or laid off.

‘Stuck at Home Without Pain Relief’

One of the biggest worries of respondents is having a health problem and needing to go to a hospital or doctor’s office, where they risk exposure to people who may be infected with COVID-19. As a result, over 70 percent say they have cancelled or postponed a medical appointment. About the same number are using telehealth to connect with their providers remotely.

Some patients are having problems getting their prescriptions refilled. And many healthcare services deemed non-essential, such as physical therapy, massage, chiropractic care and elective surgeries, have been cancelled.

“I am very upset to have had my shoulder surgery delayed again. I have already waited over 2 years and now this! My pain level is something terrible,” one patient told us.  

“I've lost non-pharmaceutical pain management; the essential physical therapies and procedures have been postponed. It is called ‘non-life saving’ but I've already lost my life due to disability from severe chronic immobilizing spinal nerve damage,” said another.

“Lupus medication Plaquenil is being used to treat Covid-19. A bit scary for those of us needing access to this medication daily for lupus,” said a patient, one of several with lupus who have that concern.

“I'm very worried about not being able to get ANY of my medications. Already last week, a non-pain related prescription wasn't available at my regular pharmacy. I had to go to another pharmacy to have it filled because my regular pharmacy doesn't know when they'd get the medicine again.”  

“My physician decided to stop prescribing my anxiety and muscle spasm medication now. I’m really having a terrible time functioning. My chiropractor will not see me as I had a fever at my last appointment,” a woman said. “I’m stuck at home without adequate pain relief and have a special needs daughter. None of my doctors understands my situation here and it’s beyond frustrating.”  

Testing and PPE

Another frustration is the lack of testing and shortages of protective gear such as face masks and gloves. Like many healthcare workers, nearly two-thirds (64%) of chronically ill patients say it is difficult or very difficult to get personal protective equipment, commonly known as PPE. And only about 3.5% of this highly vulnerable population has even been tested for the virus.

“Due to the fact that I have an autoimmune disorder, rheumatoid arthritis, I am trying especially hard to stay home,” said a patient. “There are no face masks, hand sanitizer or gloves available for sale in this area.”

“It is despicable to me that we do not have enough PPE and testing. We all knew there would be a pandemic, just a matter of when. From the feds down to local healthcare, that did not stockpile PPE or plan how they would do testing. It is a horrific failure of epic proportion,” another patient said.

Testing for coronavirus antibodies is less off a concern than PPE. A large majority (72%) don’t feel a need to be tested. Only about one in four are worried they may be infected (24%) and would like to take a test to confirm it (25%).

‘The Plague of Many Generations’

IS IT EASY OR DIFFICULT TO GET PPE?

Among our survey population, only 16 people say they’ve actually been diagnosed with COVID-19. It’s been a difficult, life-changing experience for those who have.

“I've been stigmatized on social media for being outside (no one was around) for having COVID-19. I've been shamed and treated like a leper,” said one coronavirus survivor.

“I had it in January before the news broke. My mom, who was very ill, got it and passed away from it. My dad and sister also had it and survived. I am on my second bout, which compared to the first is nothing,” said another survivor.

“I believe this virus has been here since December. My husband and both sons were very ill at Christmastime into January and I took ill in February,” said a woman who tested positive for COVID-19.

“It’s been absolutely terrorizing to experience such a thing! It’s difficult to understand how this could happen or where this virus came from. It’s the plague of many generations!” said another coronavirus survivor.

Tomorrow we’ll look at how people feel about the government’s handling of the coronavirus outbreak and whether now is a good time to start ending the lockdown.

Now It’s Our Turn

By Dr. Lynn Webster, PNN Columnist

These are hard times. When our emotions are intense and frayed, it’s often helpful to share those feelings.

Pain News Network, in collaboration with the International Pain Foundation and the Chronic Pain Association of Canada, is conducting a survey to see how the coronavirus pandemic is affecting people with chronic pain and chronic illness — who are most at risk from the virus.

They want to hear about your worries, concerns, and how you are trying to find meaning and purpose in a time of crisis. The survey is one way in which you can stay connected with others.

I encourage you to take the survey and share it with as many people as possible. Click here for the link.

The survey findings will be sent to those who request them. Hopefully, seeing the results will reassure you that you are not alone.

Other Pandemics

History shows us again and again that we are not alone. The world has always experienced widespread traumas — and now, it seems, it is our turn.

Fortunately, COVID-19 is not the Plague of Justinian, which killed half the people in the world, or the Black Death (bubonic plague), which killed at least one-third of Europe’s population. Projections for COVID-19 are nowhere near as deadly.  

Our forebears have been through other crises, although they were not of the magnitude of the two plagues. Many of them lived to tell their children and grandchildren about them, as we’ve experienced in our own families.

My paternal grandfather was my lifelong hero. He was strong and selfless, and he worked hard to take care of his family. He did everything necessary and more, without ever questioning why or complaining about the unfairness of life.

He and my grandmother lived through the 1918 Spanish Flu pandemic, which sickened and killed tens of millions of people during World War One. Doctors had no anti-viral medications or vaccines at the time.

Social distancing worked, fortunately, for the cities that practiced it. However, there were few other tools society could count on to cope with the pandemic. Beyond social distancing and masks, survival was a matter of luck more than anything else.

My parents endured the stock market crash of 1929 and the Great Depression. They also lived through World War II. Like all Americans, they experienced rationing of "luxury" items such as meat, sugar and gasoline. They hoped and trusted that their children, and their children's children, would never have to suffer the terror and deprivation they had faced.  

They hoped in vain. My siblings and I experienced the Vietnam War and the first Gulf Conflict in 1990. We saw the Twin Towers fall on September 11, 2001 and watched that lead to wars in Afghanistan and Iraq,

We lived through the AIDS epidemic. We saw a mass shooting at Columbine in 1999, and then we watched as Sandy Hook and other schools in the United States also became scenes of carnage. We witnessed thousands of people needlessly lose their lives.  We also experienced two major stock market declines, the first in 1987 and the second in 2008.

My wife and I assumed, perhaps as you did, that we would never face life challenges as great as those our parents and grandparents endured. We were wrong. Along with our children, grandchildren and the rest of the world, we now face a pandemic that has already caused over 100,000 deaths, closed businesses and created mass unemployment.  

What Lies Ahead

It may be too early to predict the eventual toll this will take on human lives. The resultant economic disaster could lead to another depression. Some estimate that the U.S. could see more than 30% unemployment -- far exceeding the joblessness of the Great Depression. For those who survive, it may take years for their personal finances and retirement savings to recover. 

This feels different from everything we have read about in history books. Tragedies are only stories until they happen to you. 

People with chronic illnesses, those who are under-insured or uninsured, and healthcare workers who are on the front lines risking their lives every day will likely be hit the hardest. However, this horror affects all of us. We find ourselves socially isolated, financially challenged, frightened for our loved ones, worried about the unknown, and perhaps dealing with serious illness.  

The lack of access to healthcare, medications and even the basic necessities of life will impact our physical and mental health. Even if we ourselves aren't suffering, people we care about certainly are. 

However, it is times like this that can bring us together to fight a common enemy. The acts of decency, bravery, creativity and generosity we see everyday should inspire us. If you follow #upworthy on Instagram, you can see hundreds of examples.  

Someday, our children’s children will read about COVID-19 in history books. Surveys are one way we can record our challenges, feelings and responses to these extraordinary days. Please take this survey and share the link widely. Thanks, and be well. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD.

Opinions expressed are those of the author alone and do not reflect the views or policy of PRA Health Sciences.

How Has the Coronavirus Affected You? Take Our Survey

By Pat Anson, PNN Editor

Are you worried about becoming infected with the coronavirus? Are you self-isolating at home? When you go out, do you wear face masks and gloves? Can you even find face masks and gloves?

Those are some of the questions we’re asking in a survey designed to measure the impact of the coronavirus on people living with chronic pain and/or chronic illness. PNN is partnering with the International Pain Foundation (iPain) and the Chronic Pain Association of Canada (CPAC) to see how people who are most vulnerable to COVID-19 are coping with a life-altering pandemic.

“We are all aware of the coronavirus and the effect it is having on our society as a whole. However, many don’t realize the negative effects it has on people living with chronic pain. Chronic pain sufferers often have conditions that render them more vulnerable to this virus than the general public. And we are concerned about access to vital medical services and medications that patients require on an on-going basis,” says Barry Ulmer, Executive Director of CPAC.

“It is important that as many people as possible take the survey. That will allow us to measure the impact of COVID-19 on people with chronic pain or chronic illness and then address those problems with our policymakers and regulators. This is important so please take a few minutes to participate.”

“People with chronic conditions are more vulnerable to catching a cold, viruses and other communicable diseases,” says Barby Ingle, the founder and president of iPain. “Many are isolated at home, have little contact with the outside world, and are unable to get protective gear such as masks. That increases their anxiety and stress, which can worsen their underlying condition.

“More personally, as a pain patient who is at high risk for the coronavirus, I would love to connect and evoke discussions with people who are dealing with a dehumanizing experience.”

Vulnerable Populations

Who is most vulnerable to COVID-19? A study of people infected in China found that those over the age of 80 have the highest fatality rate of any age group -- nearly 15 percent -- followed by people in their seventies (8%) and sixties (3.6%).  The study found that cardiovascular disease, diabetes, chronic respiratory disease, hypertension and cancer also raise the risk of death.

The CDC goes a bit further, warning that obesity, smoking, poorly controlled HIV or AIDS, and prolonged use of corticosteroids, prednisone and other immune weakening medications also increase the risk.

In a recent column, Dr. Lynn Webster suggested that chronic pain may weaken immune systems.

“People with chronic pain may be more susceptible to viruses in general, because chronic pain can change the way our immune systems work. McGill University researchers found that chronic pain changes the DNA in T-cells, a type of white blood cell essential for immunity. Researchers were surprised by the number of genes affected by chronic pain,” Webster wrote.

Our survey should only take a few minutes. You’ll be asked a series of multiple-choice questions. Select the answer that best describes your situation or leave it blank if no answer applies to you. You'll have an opportunity at the end of the survey to provide more detail or discuss other issues and concerns.

To take the survey, click here. Your feedback is important!

Survey Repudiates Canada’s Pain Care Policies

By Dr. Lynn Webster, PNN columnist

A recent survey by the Chronic Pain Association of Canada (CPAC) demonstrates all too well that our Canadian neighbors are sharing in the misfortune of America’s man-made crisis in pain care.

The online survey was distributed to patients via social media during a two-month period in the summer of 2019. CPAC received 740 responses from all 10 provinces and the territory of Nunavut. Key findings add to the growing evidence that people in pain are suffering from policies aimed at reducing access to pain medication.

• Almost two-thirds of respondents (64%) reported they have not had adequate pain control in the past two years

• A similar number (66.2%) feel discriminated against and degraded because they require opiate medicines to cope with severe pain

• A third of patients (33.5%) have either been abandoned by their doctors or their doctors have refused to continue prescribing for them

• Close to half (47.8%) have been forced against their will to taper their doses

• Nearly 45% either have deteriorated relations with their medical providers or no longer have a doctor

• Almost 40% were not adequately treated for pain in emergency rooms

Substitutes for opiates have not helped. About 70% of patients surveyed say they are more disabled, can do less with their lives, and their quality of life has declined.

Desperate Solutions

Almost 40% of patients have considered suicide because of the increased pain, while 5.4% have actually attempted suicide. A third of respondents (33.5%) reported that they know of someone who did commit suicide because of increased pain.

One other “desperate solution” is that nearly 10% of patients have substituted dangerous street drugs for what they previously received as safe prescriptions. Nearly a third of respondents (30.8%) reported they know patients who are purchasing street drugs for this reason.

Based on these findings, CPAC Executive Director Barry Ulmer penned a letter to Canada's Minister of Health.

"I’m writing on the first day of Canada’s National Pain Week, when the country notes the tragedy of chronic pain, the right of all Canadians to have their pain relieved, and government’s obligation to ensure appropriate and timely care,” Ulmer wrote.

“Yet two million Canadians with ongoing pain serious enough to warrant treatment with opioid analgesics still suffer profoundly — and pointlessly — because federal policy dismisses their needs. In today’s opioid-averse regulatory climate, their access to care shrinks precipitously as Canada’s pain specialists vanish from practice, and especially from prescribing."

Ulmer's letter further describes how people in pain feel that they are being erroneously blamed for Canada’s overdose problem. Many are being forced to taper or discontinue their pain medications. 

The CPAC findings mirror the results of a U.S. survey by Pain News Network which was released on the third anniversary of the 2016 publication of the CDC opioid prescribing guideline.  

In a critique of Canada’s 2017 opioid guideline – which was modeled after the CDC’s -- the Canadian Family Physician reports the guideline has left the Canadian health care system unable to manage its high-dose opioid patients:  

“However well-meaning they are, the 2017 Canadian opioid prescribing guidelines were introduced to a health care system ill equipped to care for patients with chronic pain. 

Without a clear and implementable patient-oriented strategy, combined with universal training in safe and effective chronic pain and addiction management for all health care providers, well-meaning documents like the 2017 Canadian guidelines might inadvertently harm the very people they hope to help."

As in the U.S., Canadian doctors are refusing to prescribe the opioids that patients need and alternative treatments are insufficient. The pharmaceutical industry is being villainized and health care professionals who prescribe opioids are under pressure to inappropriately adhere to a one-size-fits-all solution for pain patients.  

It is understandable that politicians want to reduce the harm from inappropriate use of opioids, but it should not be at the expense of people in pain. This is a human rights issue that must not be ignored.   

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.”

You can find Lynn on Twitter: @LynnRWebsterMD.

Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences or Pain News Network.

Pets Help Take Our Minds Off Pain

By Pat Anson, PNN Editor

Pets make good companions, keep their owners physically active and help us enjoy life. But did you know that pets can also help take our minds off pain?

That’s one of the findings from a new National Poll on Healthy Aging conducted by AARP and the University of Michigan Institute for Healthcare Policy. Researchers surveyed over 2,000 American adults aged 50 to 80, who answered a wide range of questions online about the health benefits of pet ownership.

Companionship, social connection and physical activity were positive side effects of pet ownership for many poll respondents.

People said their pets helped them enjoy life (88%), make them feel loved (86%), help reduce stress (79%), keep them physically active (64%) and help them cope with physical and emotional symptoms (60%), including taking their mind off pain (34%).

For those who said their health was fair or poor, pet ownership offers the most benefits. More than 70 percent of those older adults said their pet helps them cope with physical or emotional symptoms, and nearly half (46%) said their pets help distract them from pain.

"Relationships with pets tend to be less complicated than those with humans, and pets are often a source of great enjoyment," says Mary Janevic, PhD, an assistant research scientist at the U-M School of Public Health. "They also provide older adults with a sense of being needed and loved."

More than half of those who owned pets said they did so specifically to have a companion and nearly two-thirds said having a pet helps connect them to other people.

"We have long known that pets are a common and naturally occurring source of support," says Cathleen Connell, PhD, a professor at the U-M School of Public Health. “Although the benefits of pets are significant, social connections and activities with friends and family are also key to quality of life across the lifespan. Helping older adults find low cost ways to support pet ownership while not sacrificing other important relationships and priorities is an investment in overall mental and physical health."

While pets come with benefits, they can also bring concerns. Nearly one in five older adults (18%) said having a pet puts a strain on their budget. Some owners even put their animals' needs ahead of their own health.

"For people living on a fixed income, expenses related to health care for pets, and especially pets that have chronic health issues, can be a struggle. Older adults can also develop health problems or disabilities that make pet care difficult," said Janevic.

"More activity, through dog walking or other aspects of pet care, is almost always a good thing for older adults. But the risk of falls is real for many, and six percent of those in our poll said they had fallen or injured themselves due to a pet," said poll director Preeti Malani, MD. “At the same time, given the importance of pets to many people, the loss of a pet can deal a very real psychological blow that providers, family and friends should be attuned to."

More than half of older adults (55%) reported having a pet. Among pet owners, the majority (68%) had dogs, 48% had cats, and 16% had a small pet such as a bird, fish, or hamster.

Over half of pet owners (53%) reported that their pets sleep in their bed. Dog lovers are often told that’s a bad idea, but a recent study found an "overwhelmingly positive" response from owners who say they slept better with their dogs.

Survey: CDC Guideline Having ‘Horrendous’ Impact on Pain Patients

By Pat Anson, PNN Editor

The CDC opioid prescribing guideline has harmed pain patients, significantly reduced their access to pain care, and forced many patients to turn to alcohol and other drugs for pain relief, according to a large new survey of over 6,000 patients and healthcare providers by Pain News Network. 

Today marks the third anniversary of the CDC guideline, which discourages the prescribing of opioid medication for chronic pain. Although voluntary and only intended for primary care physicians, the guideline has been implemented as mandatory policy by many states, insurers, pharmacies and throughout the U.S. healthcare system. The survey found many unintended consequences for both patients and providers.

Over 85 percent of patients say the guideline has made their pain and quality of life worse. And nearly half say they have considered suicide because their pain is poorly treated.

“The guidelines are affecting legitimate patients in a horrendous way while the actual addicts are just turning to street drugs,” said one pain sufferer.  “My quality of life has been so drastically reduced I attempted to take my life last year. Fortunately, I was found before I could bleed out but every single day has been an absolute struggle.”

Over two-thirds of healthcare providers are worried about being sanctioned or prosecuted for prescribing opioids. Rather than risk going to prison, many have stopped treating pain, closed their practice or retired.

“Many of those doctors are scared to do their job, leaving patients in unnecessary pain, both acute and chronic. Tapering patients on chronic stable doses of opioids because some people abuse opioids is not just unjustified, it’s cruel and harmful,” a doctor wrote.

The PNN survey was conducted online and through social media from February 17 to March 15.  A total of 5,856 patients and 157 doctors and other healthcare providers in the U.S. participated.

Asked if the guideline is helpful or harmful, 96 percent of respondents said it has harmed pain patients — a startling verdict for an agency with a mission statement that says “CDC saves live and protects people from health threats.”

“Cannot understand or know why the CDC will not speak out on the harm done to undertreated, denied and abandoned patients,” one patient said.

“It was a criminal act. The outcome was foreseen, the guidelines were written in secret, and the carnage that we predicted has come to pass,” said an emergency medicine physician.

“They should be revoked. People are suffering and committing suicide due to inability to tolerate suffering. This is inhumane,” another provider wrote. “It blemishes CDC’s reputation.”

HAS CDC GUIDELINE BEEN HELPFUL OR HARMFUL TO PAIN PATIENTS?

Opioid Prescriptions Declining

Opioid prescriptions in the U.S. have been declining for several years and now stand at their lowest level since 2003. The drop in prescriptions appears to have accelerated since the CDC guideline was released in 2016.

Eight out of ten patients said they are being prescribed a lower dose or that their opioid prescriptions were stopped. Many indicated they were forcibly tapered off opioids without an effective alternative.

“I had my pain under control until my doctor told me he was cutting my pain meds by half,” a patient said. “He lied to me, he cut them by 85% and now I am home ridden! The CDC guidelines are a disaster to the chronic/intractable pain patients.”

“I have lost all quality of life and many days I no longer want to live with this pain,” another patient wrote. “I've never abused my meds, yet I'm being treated like a drug addict.”

“VA doctors are afraid to prescribe any opioids or narcotics, because of mandatory education courses given to all VA doctors,” a nurse with the Veterans Administration said. “The veterans are not being treated for chronic pain. Suicides have increased!”

“Our doctors should not have to choose between treating their patients in a safe meaningful way or feeling like they could lose their licenses to practice,” another patient said.

HOW HAS CDC GUIDELINE AFFECTED YOUR OPIOID PRESCRIPTIONS?

Patient Abandonment

It’s not just opioids that patients are losing access to. Nearly 9 out 10 pain patients report problems finding a doctor that’s willing to treat them. Many say they’ve been discharged or abandoned by a doctor or had problems with a pharmacy or insurer. Only a small percentage of patients have been referred to addiction treatment.

• 73% of patients say it is harder to find a doctor

• 15% unable to find a doctor

• 34% abandoned or discharged by a doctor

• 27% insurer refused to pay for a pain treatment

• 27% pharmacy refused to fill an opioid prescription

• 5% given a referral for addiction treatment

“As an RN in pain management I have seen decreased quality of life, increased pain and anxiety for patients. Providers fear for their license and livelihood. My staff spends HOURS on the phone trying to authorize scripts,” a nurse wrote.

“Most doctors in our area are refusing to prescribe any opioids, even the pain management doctors. This is forcing some patients to buy street drugs,” a primary care physician said.

Desperate Measures

The widespread denial of care has many patients taking desperate measures for pain relief. One in five are hoarding opioid medication because they fear losing access to the drugs. Many others are using alcohol, marijuana or the herbal supplement kratom for pain relief. A small percentage are using illicit drugs. Few have found medical treatments that work as well as prescription opioids.

• 22% of patients hoarding opioid medication

• 11% obtained opioid medication from family, friends or black market

• 26% used medical marijuana for pain relief

• 20% used alcohol for pain relief

• 20% used kratom for pain relief

• 4% used illegal drugs (heroin, illicit fentanyl, etc.) for pain relief

• 2% found other treatments that work just as well or better than Rx opioids

“I know seven people personally that have gone to the streets to get pain relief. Four of them died because it was mixed with fentanyl. Two committed suicide,” one patient said.

“Since my doctor stopped prescribing even my small amount of opioids, I deal with days where I can’t even get out of bed because I hurt so much and I’m stuck turning to alcohol, excessive amounts of acetaminophen and NSAIDs,” another patient wrote. “Kratom has been the omly thing that has helped my pain.”

“I have been without a prescription for two years and have been getting medication on the street. I cannot afford this and I have no criminal history whatsoever. I have tried heroin for the first time in my life, out of desperation and thank God, did not like it. It was stronger than anything I need to help with pain,” wrote another patient.

Addiction and Overdoses Still Rising

While the guideline appears to have significantly reduced the dose and quantity of opioid prescriptions, patients and providers overwhelmingly believe it has failed to reduce opioid addiction and overdoses. Nearly 49,000 Americans died from opioid overdoses in 2017, but over half of the deaths involved illicit fentanyl or heroin, not prescription opioids.

“They are attacking the wrong problem. Pain patients are under strict scrutiny by their doctors and therefore have an addiction rate lower than the general population. The large numbers of deaths are among those who are using heroin and other illegal drugs,” one patient wrote.

“As a retired substance abuse counselor, these new guidelines do nothing to stop the real addict. It only hurts those of us in chronic pain,” said another patient.

“What happened to care for the elderly, disabled and sick?” asked one patient. “We are not the problem. The amount of prescription pain medicine has significantly gone down but the overdoses are continuing to rise. This is targeting the wrong people!”

HAS CDC GUIDELINE REDUCED OPIOID ADDICTION AND OVERDOSES?

Guideline Revisions Needed

An overwhelming majority (97%) of patients and healthcare providers believe the CDC guideline should be revised. When it released its recommendations in 2016, the agency said it was “committed to evaluating the guideline” and would make future updates “when warranted.” A CDC spokesperson recently told PNN there are several studies underway evaluating the impact of the guideline, but gave no indication that any changes are imminent.

Patients and providers say the the guideline is misunderstood, based on faulty evidence and needs revision.

“It is a falsified document created only to satisfy political pressure which demanded such a report. There is no medical/scientific evidence to support the conclusions made in the document,” a patient wrote.

“The CDC needs to correct their glaring error. They need to make sure that every doctor in America is re-educated and reassured that they can treat people with serious pain disorders without being jailed,” said another patient. “The CDC needs to stand up and admit their mistake, they need to correct the damage.”

“While the guidelines are useful, they should not have been made into mandatory rules followed by states and insurers. The patients with chronic pain issues are suffering. Can we revisit them?” asked a palliative care doctor.

SHOULD CDC GUIDELINE BE REVISED?

For more survey results and comments on the guideline, see “What Pain Patients Say About CDC Opioid Guideline” and “What Doctors Say About the CDC Opioid Guideline.”

Over 6,200 people responded to PNN’s survey. In tabulating the results, we did not include the responses of caretakers, spouses and friends of patients or those who live outside the U.S. We greatly appreciate everyone who participated and will be releasing more survey results in coming days.

A Third of Pain Patients Have Stopped Using Rx Opioids

By Pat Anson, Editor

Over a third of pain patients (34%) have stopped taking opioid medications because their doctor is no longer willing to prescribe them, according to a large new survey of American adults living with chronic pain.

Eight out of ten patients (84%) say there is an unfair stigma associated with chronic pain, and half said they have lied about or hidden their use of opioid painkillers from others.

“The rise of the opioid epidemic has had a significant impact on those living with chronic pain, and oftentimes the voice of this population has gotten lost. We wanted to shine some light on the experiences of chronic pain sufferers with this research,” said Shai Gozani, PhD, president and CEO of NeuroMetrix, which commissioned the survey.

NeuroMetrix is the creator of Quell, a wearable medical device that uses neurostimulation to relieve chronic pain. The company hired the market research firm of Vanson Bourne to interview 1,500 Americans aged 25 and older, who were suffering from chronic pain for at least three months. An equal number of men and women participated.

The interviews were conducted online in early 2018 -- two years after the Centers for Disease Control and Prevention released new guidelines that discourage the prescribing of opioids for chronic pain. Although voluntary and only intended for primary care physicians, the guidelines have been widely adopted by insurers, regulators and providers throughout  the U.S. healthcare system.

The survey found that most pain patients are cautious about their use of opioids. Sixty-one percent are worried about addiction, a little over half (51%) said they only take opioids when necessary, and 42% don't like their side effects.

The stigma associated with opioids impacts how some patients communicate with their doctors. One out of five (20%) downplay the level of their pain and 13% said they are more cautious when speaking with their doctor. Only 9% of patients said they emphasize their pain level.

Most patients want to try pain therapies besides opioids. Nine out of ten said they are actively looking for new treatment options and most had tried at least one alternative, non-pharmacological therapy.  

Most Widely Used Alternative Therapies

• 65% Physical therapy
• 65% Lotions, rubs and patches
• 44% Over-the-counter TENS
• 33% Doctor prescribed TENS
• 28% Yoga, pilates, meditation
• 21% Acupuncture
• 16% Medical marijuana
• 16% Cognitive behavioral therapy
• 15% Surgery, implantable devices

The two most common reasons for pain patients to seek alternative treatments is because they don't like the side effects of prescription drugs (43%) and they prefer to treat pain without medication (39%). A majority (59%) don't believe their doctor is completely informed of treatment options outside of prescription drugs.

“These results underscore the need for more research and treatment modalities to support those living with chronic pain, as well as a joint effort among care providers, innovators, government stakeholders and patients to expand the goals of pain treatment," said Gozani.

"If we shift focus to making the end goal of pain treatment about decreasing suffering and disability rather than exclusively pain intensity, we may open ourselves to new possibilities and treatments that will empower those with chronic pain to find relief and gain greater control over their lives.”

You can read the full report, “Flipping the Script: Living with Chronic Pain amid the Opioid Crisis” by clicking here.

Kratom Users Say Ban Will Lead to More Drug Abuse

By Pat Anson, Editor

Kratom is a safe and surprisingly effective treatment for chronic pain and a wide variety of medical conditions, according to a large new survey of kratom consumers. Many say banning the herbal supplement will only lead to more drug abuse and worsen the nation’s opioid epidemic.

The online survey of 6,150 kratom consumers by Pain News Network and the American Kratom Association was conducted after plans were announced by the U.S. Drug Enforcement Administration to classify two chemicals in kratom as a Schedule I controlled substances. Unless the scheduling is postponed, the sale and possession of kratom could become a felony as early as September 30.

The survey findings dispel the myth that kratom is used recreationally like marijuana by people who only want to get “high” or intoxicated. The vast majority say they use the herb in teas and supplements solely to treat their medical conditions.

Asked what was the primary reason they used kratom, over half (51%) said they used the herb as a treatment for chronic pain, followed by anxiety (14%), depression (9%), opioid addiction (9%) and alcoholism (3%). Less than two percent said they used kratom recreationally or out of curiosity.

WHAT IS THE PRIMARY REASON YOU USE KRATOM?

“The survey tells us exactly what we’ve been trying to tell the DEA, lawmakers and the general public. The average kratom consumer is nothing like we are being portrayed as,” says Susan Ash, founder of the American Kratom Association.

“The average kratom consumer is a man or woman in their 40’s, 50’s or 60’s, who is primarily looking for alternatives to pharmaceutical drugs that either didn’t work for them or had side effects that were unbearable. The survey clearly shows the majority of people are using kratom to manage chronic medical conditions.”

Nine out of ten patients (90%) said kratom was very effective in treating their pain or medical conditions.

Asked if they get high from using kratom, three out of four consumers (75%) said no and 23% said “a little.” Only about 2 percent said they get high from using the herb. Many likened the stimulative effect of kratom to a strong cup of coffee.

"I only take enough kratom to take the edge off. I never get high like I did on pills or marijuana. Just a clearer state of being with some pain relief."

"It's not possible to get high from kratom as that's not what it does. It is in the same family as coffee and acts just like coffee."

"It elevates my mood, gives me energy and helps with the pain."

"I was stable at all times with kratom. Sound minded and alert. In no negative way did it affect my ability to function. If anything, it improved that and my overall happiness in life."

CAN YOU GET "HIGH" FROM KRATOM?

While the DEA maintains that kratom poses “an imminent hazard to public safety” and has been linked to several deaths, the vast majority of kratom consumers believe it is safe to use.

Ninety-eight percent said kratom was not a harmful or dangerous substance and 95% said banning the herb will have a harmful effect on society.

Many have strong feelings about what will happen if kratom is made illegal.

"I believe this is incredibly harmful to the thousands of people who have been able to find relief from a huge variety of issues, but especially those treating an opioid addiction. Those people will be forced back to opiates."

"I believe that the ban on kratom will trigger the biggest uptick in opiate-related deaths that we've seen in decades."

"Banning kratom will in no way protect society from an imminent health hazard, but actually push society further into the deadly opiate epidemic that plagues America today."

"It will kill people if they make kratom Illegal."

"We must utilize every tool possible to combat addiction to dangerous drugs, and banning kratom is like cutting off your nose to spite the face: stupid and unproductive."

WILL BANNING KRATOM BE HELPFUL OR HARMFUL TO SOCIETY?

Given a variety of scenarios on what could happen if kratom becomes illegal, two out of three respondents (66%) said kratom consumer would be more likely to become addicted and overdose on other substances.

Over half (52%) predicted that kratom users would be more likely turn to illegal drugs such as heroin and illicit fentanyl.

Half (51%) also said kratom consumers would be more likely to consider suicide.

Asked what they would do personally if kratom is banned, one out of four (27%) said they would seek to buy kratom on the black market – indicating that many are willing to risk being charged with a felony rather than give up kratom. Less than a third (30%) said they would not buy kratom on the black market.

"Making kratom illegal isn't going to stop people from buying and taking kratom."

"People who want kratom bad enough will find it and keep using it."

"I believe kratom consumers are likely to try multiple strategies, but most likely they will go back to whatever they used prior to kratom and there will likely be a black market for illegal consumption because none of these other options can compete with the efficacy of kratom."

"We will all be forced to go back on the very drugs that kratom helped us get off of! It will kill a whole lot of people! It will undoubtedly cause an increase in suicides, overdoses of illegal drugs like heroin and morphine."

"Banning this leaf is equivocal to signing the death certificates of many. You may as well be sticking the needle into many arms."

IF KRATOM BECOMES ILLEGAL, WOULD YOU SEEK TO BUY IT ON THE BLACK MARKET?

Susan Ash of the American Kratom Assocation estimates that between 3 and 5 million Americans have tried kratom. And she thinks the DEA’s attempt to ban the herb may have actually led more people to try it.

“Probably a quarter of a million have tried it since they put this notice out,” Ash said.

To see the complete survey results, click here.

Click here to see a report on the effectiveness of kratom in treating specific chronic pain conditions such as fibromyalgia, migraines and back pain.

Survey: Opioids Reduced or Stopped for Most Patients

By Pat Anson, Editor

Over two-thirds of pain patients say their opioid medication has been decreased or stopped since the CDC adopted its opioid prescribing guidelines, according to a new survey that also found over half of the patients have considered suicide since the guidelines were implemented.

A total of 1,978 patients participated in the survey, which was conducted through social media and online support groups in recent weeks. The survey was designed by Lana Kirby, a Florida paralegal and chronic pain sufferer who became frustrated by difficulties she faced in obtaining opioid pain medication.

Although unscientific, the survey results are the first broad indication of the impact the CDC guidelines are having on both physicians and patients. Those guidelines, which discourage primary care doctors from prescribing opioids for chronic pain, are meant to be voluntary but are being widely implemented by many different prescribers, according to survey.

“To a person, respondents report that they feel humiliated, degraded, shamed, and stigmatized by the loss of choice over their physician patient alliance and program of care,” said Terri Lewis, PhD, a patient advocate and researcher who conducted an analysis of the survey.

“Many now acknowledge that their doctor’s appointment conversation is all about keeping the physician safe from DEA oversight or license restrictions as opposed to optimizing the consumer’s activity and functioning levels.”

"I am afraid to tell the doctor what I need," said one patient.

“My doctor said he is afraid of the DEA and CDC,” said another.

“My doctor said I cannot be cured so there is no point in treating me for pain,” wrote one patient.

"Because my doctor was arrested other doctors have refused to take on his patients for treatment," said another.

Over 68% of patients said their opioid pain medication has been decreased or discontinued since the  guidelines were released in March.  Nearly 45% were warned by their doctor that additional decreases will be necessary. And just over 50% said they had considered suicide as a way to end their pain.

“It is important to note that CDC’s guidelines are directed to primary care physicians with the suggestion that they should be cautiously and conservatively applied to chronic pain patients with complex needs. That message does not seem to have been received at the physician level, as both primary care and Board Certified pain management practitioners are uniformly applying extreme prescribing restrictions to the regimens of those who replied, even where they had been in long term successful treatment for extensive periods of time without difficulty,” said Lewis.

Other survey findings:

• 75% of patients said they are not receiving adequate pain control
• 57% said they had been discharge or abandoned by a doctor because they need opioid treatment
• 44% said they had problems getting a prescription filled at a pharmacy
• 90% said their pain levels, activities and social interactions have worsened
• 97% said they have never been addicted or required treatment for drug abuse

Nearly four out of ten patients (39%) said they had been told by a doctor that they must have an operation or invasive procedure, or they will be discharged from the practice or have their medications reduced.

“Increasingly, respondents are being threatened with pain care protocols that are not optimal, such as epidural injections (or) installation of durable medical equipment. If they refuse, their access to oral medications, even where they have been used impactfully, is systematically reduced or suspended,” said Lewis.

The CDC has had very little to say about the impact of guidelines since their release. As Pain News Network has reported, a top CDC official recently wrote a letter to one patient saying the guidelines were only meant as a “guide” for primary care providers “as they work in consultation with their patients.”

“The Guideline includes a recommendation to taper or reduce dosage only when patient harm outweighs patient benefit of opioid therapy. The Guideline is not a rule, regulation, or law. It is not intended to deny access to opioid pain medication as an option for pain management. It is not intended to take away physician discretion and decision-making,” wrote Debra Houry,  Director of the CDC’s National Center for Injury Prevention, which oversaw the guidelines’ development.

Medicare Drops Pain Questions in Patient Survey

By Pat Anson, Editor

The Centers for Medicare and Medicaid Services (CMS) has caved into political pressure from Congress and healthcare lobbying organizations by proposing to drop all questions related to pain in patient satisfaction surveys.

The proposed rule change is the latest in a series of steps by the federal government aimed at fighting the so-called opioid epidemic by reducing the prescribing of narcotic pain medication. The policies are meant to prevent addiction and abuse, but have left many pain patients without access to opioids, and feeling marginalized and abandoned by the healthcare system.

At issue in the Medicare rule change is a funding formula that requires hospitals to prove they provide quality care through patient satisfaction surveys. The formula rewards hospitals that provide good care and are rated highly by patients, while penalizing those who do not. 

Critics claim that three pain care questions in the survey -- known as the Hospital Consumer Assessment of Healthcare Providers and Systems survey (HCAHPS) -- encourage doctors to overprescribe opioid pain medication to boost their hospital's scores.

"While there is no empirical evidence of this effect, we propose to remove the pain management dimension from the Hospital Value-Based Purchasing program to eliminate any potential financial pressure clinicians may feel to overprescribe pain medications," CMS said in a statement.

"CMS continues to believe that pain control is an appropriate part of routine patient care that hospitals should manage and is an important concern for patients, their families, and their caregivers."

CMS has been under intense political pressure over the last few months to drop the pain questions. In March, 26 U.S. senators sent a letter to Health and Human Services Secretary Sylvia Mathews Burwell claiming "the evidence suggests that physicians may feel compelled to prescribe opioid pain relievers in order to improve hospital performance on quality measures."

Several physician groups have also made the same claim, without offering anything more than anecdotal evidence. Physicians for Responsible Opioid Prescribing (PROP)  said the survey "fosters dangerous pain control practices" and even the American Medical Association recently said the surveys "are clearly motivating forces for opioid prescribing."

A top Medicare official disputed those claims in an article published in JAMA. 

"It has been alleged that, in pursuit of better patient responses and higher reimbursement, HCAHPS compels clinicians to prescribe prescription opioids. However, there is no empirical evidence that failing to prescribe opioids lowers a hospital’s HCAHPS scores," wrote Lemeneh Tefera, MD. “Nothing in the survey suggests that opioids are a preferred way to control pain.”

These are the three pain questions in the CMS patient survey::

During this hospital stay, did you need medicine for pain?

During this hospital stay, how often was your pain well controlled?

During this hospital stay, how often did the hospital staff do everything they could to help you with your pain?

The agency said it would develop and "field test" alternative questions related to pain and include them in the survey. Public comments on the proposed rule change will be accepted until September 6, 2016.

CMS said the rule changes "are based on feedback from stakeholders, including beneficiary and patient advocates, as well as health care providers, including hospitals, ambulatory surgical centers and the physician community."

While some politicians and lobbyists may support the CMS decision, pain patients clearly do not. 

Pain News Network and the International Pain Foundation recently conducted a survey of over 1,250 pain patients. Nine out of ten said patients should be asked about their pain care in hospital satisfaction surveys. Over half rated the quality of their pain treatment in hospitals as poor or very poor, and over 80 percent said hospital staffs are not adequately trained in pain management. 

The Centers for Disease Control and Prevention has adopted guidelines that discourage primary care physicians from prescribing opioids or chronic pain. The Obama administration has also proposed spending over a billion dollars on opioid addiction treatment. Not one cent is proposed for pain research or for funding alternative treatments for pain.  

Survey: Painkillers Bigger Problem than Alcohol

By Pat Anson, Editor

A new poll is adding further fuel to the fire over opioid abuse and the disproportionate amount of attention it gets compared to other health problems.

The survey by the Kaiser Family Foundation found that two-thirds of Americans consider the abuse of opioid pain medication an extremely or very serious problem. And four out of ten said they knew someone who was addicted to prescription painkillers, often a close friend or family member.

The problem is so serious that more Americans now consider painkillers a bigger problem than alcohol (66% vs. 57%), even though four times as many Americans die from alcohol related causes than from opioids.

Nearly 19,000 Americans died from prescription opioids in 2014, according to the Centers for Disease Control and Prevention. The National Institutes of Health estimates 88,000 people die annually from alcohol related causes.

Alcohol misuse is also estimated by NIH to cost the U.S. economy nearly $250 billion annually, while the “economic burden” of opioid abuse was estimated by the DEA at $53 billion in 2011.   

The Kaiser Foundation poll comes in the middle of an election season, as the White House and Congress consider various funding measures to address the so-called epidemic of opioid abuse and addiction.

The survey found that a large majority of Americans believe federal and state governments, doctors, and individuals who use prescription opioids are not doing enough to fight opioid addiction. Only about a third said police officers weren’t doing enough to enforce drug laws, a sign that many Americans don’t consider opioid abuse just a law enforcement issue.

Asked which policy efforts would be very or somewhat effective in reducing opioid abuse, over eight in ten said doctors and medical students should have better training in pain management and that there should be increased access to addiction treatment programs.  Less than half said putting warning labels on prescription opioids explaining the risk of addiction would be effective. Respondents were not asked if access to opioid pain medication should be reduced.

Policies Rated Very or Somewhat Effective in Fighting Opioid Abuse

• 88% Increase pain management training
• 86% Increase access to addiction treatment
• 84% Public education and awareness programs
• 83% Increase research about pain and pain management
• 82% Monitor doctors’ prescribing habits
• 63% Encourage disposal of extra pain meds
• 60% Reduce stigma of opioid addiction
• 48% Put addiction warning labels on opioid bottles

Putting the issue in perspective, while most Americans consider painkiller abuse a serious problem, the issue ranks well behind several other health problems such as cancer, diabetes, obesity and heart disease.

Health Problems Considered Extremely or Very Serious

• 86% Cancer
• 78% Diabetes
• 74% Lack of access to mental healthcare
• 73% Obesity
• 72% Heart disease
• 71% Contaminated drinking water
• 70% Heroin abuse
• 66% Painkiller abuse
• 61% Lack of access to healthcare
• 57% Environmental contamination
• 57% Alcohol abuse
• 54% Lack of access to affordable food

The Kaiser Foundation survey was conducted in mid-April in a random telephone sample of 1,201 American adults. The poll is estimated to have a sampling error of 3 percent.

To see the complete results of the Kaiser poll, click here.

Pain Patients Tired of Being Labeled as Addicts

By Pat Anson, Editor

If there’s one thing that gets a pain patient frustrated or angry, it’s being labeled as an addict or a “drug seeker” in search of opioids.  So imagine hearing that from a doctor or nurse at a hospital where you’ve gone for treatment because your pain is out of control or unbearable.

But it happens all the time.

“I refuse to go to the ER for pain. Unless I feel I'm absolutely dying, I will not go. It isn't worth being made to feel like I'm only ‘putting on a show’ or I'm a junkie just trying to get high,” one pain sufferer told us. “In every situation I've experienced in going to the ER with a complaint (of) pain, I've been made to feel less than human and was automatically met with suspicion.”

“I was screamed at and humiliated by the front desk nurse in front of a whole lobby of people for having pain and no medication or treatment. Had nowhere to go and didn’t know what else to do. She was so angry at me, I was shocked. I couldn’t believe it,” said another pain patent.

“My husband experienced a ruptured appendix at home,” wrote one woman. “His hospital experience was a nightmare! I had to stay at the hospital 24/7 just to make sure that his pain was kept under control. He was ridiculed, humiliated and not believed to the point that he was ready to walk out.”

Those are some of the typical responses we received in a survey of over 1,250 acute and chronic pain patients by Pain News Network and the International Pain Foundation (IPain).  Nearly three out four patients surveyed said they currently take an opioid pain medication.

When asked if they ever felt labeled as an addict or drug seeker by hospital staff, nearly half (46%) said they often were and over a third (34%) said it happens sometimes. Only 20% of pain patents said they had not been labeled.

“I was treated like a drug seeker and humiliated in front of the staff and patients. This has happened several times,” wrote one pain sufferer.

“I was insulted, berated, and humiliated by hospital staff while seeking help for my chronic pain conditions,” said another.

DID YOU EVER FEEL YOU WERE LABELED AS AN ADDICT OR "DRUG SEEKER" BY HOSPITAL STAFF?

“I have panic attacks about going to the hospital because I have been treated so badly,” wrote one woman. “I've heard nurses say, ‘She's only here for the free meds.’ I've had nurses and doctors yell at me when I explain my pain symptoms and ask for something simple like a pillow, or an IV in a different spot. I've been told, ‘You’re in a hospital. You are supposed to be uncomfortable!’”

“Doctors have called me a liar when it comes to why I have previously been in the ER or hospital. I have been told I am no better than a street addict,” wrote a patient who has pancreatitis and lupus.

“The nurses that treated me saw on the state Rx monitoring website I was taking opioids (although I had already told them). They shut the curtain and told me to take a nap! I was not seen by a doctor and was told I was a drug seeker,” wrote a patient who was seeking treatment for abdominal pain. “I got up and left and a couple weeks later was diagnosed with diverticulitis and a serious infection that could have killed me. I had 2 1/2 feet of my intestine taken out.”

Asked if doctors were reluctant to give them opioid pain medication while they were hospitalized, 38% of pain patients said it happens often and 36% said sometimes. Only 26% said no.

“I had a doctor in an emergency room situation one time during an episode I was having, who actually stood in the open doorway of my room, I was still in the ER, and yelled at me as loud as he could, that he wasn't giving me any pain medicine,” said one patient.

“I understand why opioids are scary to prescribe and I do understand that there are a lot of people just looking to get high. But doctors and hospitals discriminate (against) all of us with real medical problems and it’s inhumane,” wrote another.

WERE DOCTORS RELUCTANT TO GIVE YOU OPIOID PAIN MEDICATION WHILE YOU WERE HOSPITALIZED?

“The nurses and doctors need to understand the difference between the 98% who are not drug seeking and be able to address the patients’ needs who present in front of them,” said Barby Ingle, president of IPain.  “Treatment based on misconceptions and poor pain understanding is not ethical or appropriate. We must create policies that support the pain patient and their individual needs.”

Even patients who do not take opioid medication said they were labeled as addicts or drug seekers --  just as often as those who take opioids.

“I am really sick of being looked at as if I am there for dope meds. Not all of us is addictive or crazy about pain meds,” wrote one patient.

“I am not a bad person. I am sick. I did not do this to myself, it was done to me in childhood trauma. I was abused, please don't abuse me more,” pleaded another patient.

“Everyone needs to be treated with compassion, respect, and have their concerns listened to. This is not happening. We need to start holding people accountable for how they treat people in pain,” says Janice Reynolds, a pain sufferer and retired palliative care nurse.

“I would encourage everyone when you have been to the ER or in the hospital to write a letter to the CEO of the hospital, the vice president of nursing, and the medical and nursing managers of the department you were in.  Tell them how you were treated, how they made you feel, what happened that didn’t work, and try to get names and write them down.  Do this for good treatment as well as bad treatment,” Reynolds wrote in an email Pain News Network.

“I have actually done this and while one letter may not be effective, you are a costumer and if they get several letters they may start seeing there is a problem.  I know at the hospital I worked at, we were always told about a positive or negative comment which mentioned us by name.”

Another way to lodge a complaint – or compliment – is in patient satisfaction surveys, which Medicare requires hospitals to conduct to prove they provide quality care. Medicare rewards hospitals that are rated highly by patients, while penalizing those who do not. 

However, Maine Sen. Susan Collins (R) and 25 of her colleagues in the U.S. Senate have sent a letter to Health and Human Services Secretary Sylvia Mathews Burwell asking that Medicare stop asking patients about their pain care because that could lead to opioid overprescribing.

“We are concerned that the current evaluation system may inappropriately penalize hospitals and pressure physicians who, in the exercise of medical judgment, opt to limit opioid pain relievers to certain patients and instead reward those who prescribe opioids more frequently,” the letter states.

Pain patients say that’s nonsense. When we asked if patients should still be asked about their pain care in hospital satisfaction surveys, over 92% said yes and less than 3% said no.

“I find this notion that we would stop asking patients how well their pain was controlled in the hospital appalling,” said Cindy Steinberg, National Director of Policy and Advocacy for the U.S. Pain Foundation. “Dropping these questions from the Medicare survey sends the message that pain relief is no longer part of a quality-of-care measure that hospital staff need be concerned about. Controlling patients’ pain is just not that important any more.  Is this really where we want to go?

SHOULD PATIENTS BE ASKED ABOUT THEIR PAIN CARE IN HOSPITAL SATISFACTION SURVEYS?

“We have moved from the war on drugs to the war on pain patients and now to the war on the very concept of appropriately treating pain.  This is a shameful perspective that condones a cavalier and uncaring attitude toward the pain and suffering of fellow human beings.  I wonder what the Senators who signed this letter would say about the responsibility for doctors and nurses in hospitals to relieve pain if it was their loved ones or themselves who was experiencing unrelieved pain in the hospital?”

A request to Sen. Collins’ office for an interview or statement on the survey findings went unanswered.

To see the complete survey results, click here.

Tomorrow we'll see how pain patients feel about non-opioid medications and whether they are effective in providing pain relief.