Why We Need to Study Suicides After Opioid Tapering

By Stefan G. Kertesz, MD

How can we understand and prevent the suicides of patients in the wake of nationwide reductions in opioid prescribing?

Answering that question is the passion and commitment of our research team at the University of Alabama at Birmingham School of Medicine. Our study’s name, “CSI: OPIOIDs,” stands for “Clinical Context of Suicide Following Opioid Transitions.” Let me tell you why we are doing this work, what we do, and how you can help.

Opioid prescribing in the US started falling in 2012, after a decade of steady increases. The original run-up in prescribing was far from careful and a judicious correction was needed. A judicious correction, however, is not what happened. Instead, opioid prescriptions fell, rapidly, to levels lower than those seen in 2000. It may require a book to understand how prescribers swung so easily from one extreme to another.

For the 5 to 9 million patients who were taking prescription opioids long-term, reductions and stoppages were often rapid, according studies in the US and Canada. In one Medicare study, 81% of long-term opioid discontinuations were abrupt, often leaving patients in withdrawal and uncontrolled pain.

Prescription opioid reductions are not always good, and not always bad. For some patients, modest reductions are achievable without evident harm, especially if a reduction is what the patient wants to achieve. For others, the outcomes appear to be harmful. Several who serve on our research team have witnessed friends, family, or patients deteriorate physically or emotionally following a reduction. Some attempted suicide and, tragically, others died by suicide.

Large database analyses tell a similar (and nuanced) story. In research derived from Kaiser Permanente, Veterans Health Administration, Oregon’s Medicaid program, and Canadian databases, patient outcomes were diverse. Some researchers found no safety problems after opioid reductions, but others describe suicides, mental health crises, medical deteriorations, and overdoses at frequencies that are too common to ignore. These are not acceptable outcomes. 

The shocking nature of patient suicides led some experts to jump to conclusions, arguing that acute withdrawal from opioids explains all the bad outcomes, and that slow reductions or tapers prevent harm. But that’s not true. In two studies, mental health crises or overdoses occurred at elevated rates a full year after modest dose reductions, such as a 39% reduction in one national study.

Jumping to conclusions about why something bad happens is another way of saying, “We don’t want to investigate.”

After a suicide, we think the right step – the respectful step – is to ask questions: What happened here? Why did it happen? What were all the factors in a person’s life that might have played a role in their death? And where does an opioid reduction fit, or not fit, into explaining what happened?

Asking those questions is crucial. The decision to end one’s life through suicide is rarely simple, but understanding the person’s history and reasoning will spur better approaches to care. Approaching these questions through in-depth rigorous research, rather than pretending we already know why suicides happen, could also induce leaders to take them more seriously than they have to date.

Just like investigators examining a plane crash, we intend to collect the full story of what happened, carrying out detailed interviews and, where possible, reviewing medical records. Studying just one case can tell us a great deal. But our goal is to study over 100 patient suicides.

This approach is called a “psychological autopsy interview.” That phrase can sound a bit daunting. In reality, it’s an interview where we ask about the person’s life, their health, their care, and what happened before they died.

How You Can Help

We seek people who have lost somebody, such as a close family member or good friend, to suicide after a prescription opioid reduction. We are studying deaths in the US among veterans and civilians, and hope to interview more than one person for each suicide.  

Interview topics range from health and social functioning, to care changes prior to death, to whether the person who died felt a sense of connection to others or perceived themselves to be a burden. To our knowledge, no other team is attempting to do this work.  

We face a singular challenge: recruitment. That’s why we need your help. For the last 60 years, studies of suicides involved collaboration with medical examiners in a state or county. That option is not available to us, because medical examiners usually don’t know about health care changes that took place prior to a person’s death.  

There is no master list of suicides that occurred following a reduction or stoppage in opioids. Yet those deaths are precisely the ones we need to learn about. The only way we can document those cases is to reach out to the public and ask if survivors are willing to come to us, either online or by phone (1-866-283-7223, select option #1). 

If enough survivors are willing to participate in this initiative, then we can begin to describe, understand, and prevent future devastating tragedies.  

For the people who are considering participation in the study and wondering what risks are involved, let me offer some reassurance. First, there is an online questionnaire housed on a very secure server. A person can start it and stop at any point if they choose, no questions asked.  

Also, this study is protected by two federal “Certificates of Confidentiality.” These federal orders prohibit release of identifiable data under any circumstances, even a court order.  We are aware that some families are pursuing legal action, and this was a major factor in our decision to take this extra step to protect participants. 

When a person completes the survey, we will evaluate their answers to see how confident they were that the death was likely a suicide, and whether the death occurred after a prescription opioid dose reduction. If they meet these criteria, then we will reach out to discuss further participation in the research study.  

What follows is a more detailed informed consent process. There is a modest incentive ($100) for being interviewed, and a smaller one if the person can work with our medical record team. It is not necessary for a survivor to have access to a loved one’s medical records.  

So far, the interviews we’ve conducted have been serious, warm and thought-provoking. At the outset, we were concerned that these interviews could be upsetting. We learned from reading the literature on this type of interview, that the individuals who agree to participate usually have a desire to share their feelings about their loved one’s death and tend to perceive the interview as a positive experience.  

In the long-run, we hope that after looking at 110 suicides, we can formulate recommendations and programs for care, without leaping to any conclusions. We want to help save lives.  

A study like this is clearly not the only answer to an ongoing tragedy. Research is almost never a “quick answer” to anything. That’s why many members of our team have already engaged in direct advocacy with federal agencies. It was 4 years ago that several of us urged the CDC to issue a clarification regarding its 2016 Guideline on Prescribing Opioids for Pain. A revised CDC guideline was released last year, but we’ve noticed that the health care situation faced by countless patients with pain remains traumatic and unsettled.

These events are hidden and need exploration. We need to take this next step and learn more to prevent further tragedies and lost lives.

If you would like to enter the screening survey for this research, please click here.

If you would like to learn more general information about our study, click here.

If you know a group of patients or clinicians who would like a flyer, presentation, or a link to our study, please let us know by email at csiopioids@uabmc.edu or stefan.kertesz@va.gov

Stefan G. Kertesz, MD, a Professor of Medicine and Public Health at the University of Alabama at Birmingham School of Medicine, and a physician-investigator at the Birmingham Alabama Veterans Healthcare System.  Stefan is Principal Investigator for the CSI: OPIOIDs study.

Views expressed in this column are those of Dr. Kertesz and do not represent official views of the United States Department of Veterans Affairs or any state agency.

For anyone thinking about suicide, please contact the 988 Suicide & Crisis Lifeline, available online, via chat, or by dialing “988.”  A comprehensive set of resources can also be found at this link.

CDC Report Ignores Suicides of Pain Patients

By Pat Anson, Editor

The suicide rate in the United States continues to climb, with nearly 45,000 people taking their own lives in 2016, according to a new Vital Signs report by the Centers for Disease Control and Prevention.

The suicide rate in the U.S. is so high it rivals the so-called “opioid epidemic.” The number of Americans who died by suicide (44,965) exceeds the overdose deaths linked to both illicit and prescription opioids (42,249).  The nationwide suicide rate has risen by over 30 percent since 1999.

“Unfortunately, our data shows that the problem is getting worse,” said CDC Deputy Director Anne Schuchat, MD. “These findings are disturbing. Suicide is a public health problem that can be prevented.”  

Contrary to popular belief, depression is not always a major factor in suicides. The report found that less than half of the Americans who died by suicide had a diagnosed mental health issue. Substance abuse, physical health problems, and financial, legal or relationship issues were often contributing factors. So was the availability of firearms, which were involved in nearly half of all suicides.

But while CDC researchers can go into great detail about the methods, causes, demographics, ethnicity and even the drugs used by suicide victims, they did not investigate anecdotal reports of a growing number of suicides among pain patients.

“Our report found that physical health problems were present in about a fifth of individuals as circumstances considered to lead up to suicide," Schuchat said in a conference call with reporters. "That doesn’t differentiate whether it was intractable pain versus other conditions that might have been factors.”

Asked directly if lack of access to opioid medication may be contributing to pain patient suicides, Schuchat said that federal agencies were “working on comprehensive pain management strategies,” but they were not investigating patient suicides, such as the recent tragic death of a Montana woman.

“We don’t have other studies right now. But I would say that the management of pain is a very important issue for the CDC and Health and Human Services,” she said.

PNN asked a CDC spokesperson if the agency was conducting any studies or surveys to determine whether the CDC's 2016 opioid guideline was contributing to patient suicides, and what impact it was having on the quality of pain care. The boilerplate response we received essentially said no, and that the CDC was only tracking prescriptions. 

"Through its quality improvement collaborative and its work with academic partners, CDC is evaluating the impact of clinical decisions on patient health outcomes by examining data on overall opioid prescribing rates, as well as measures such as dose and days’ supply, since research shows that taking opioids for longer periods of time or in higher doses increases a person’s risk of addiction and overdose," Courtney Leland said in an email.

As PNN has reported, the CDC’s guideline may be contributing to a rising number of suicides in the pain community.  In a survey of over 3,100 pain patients on the one-year anniversary of the guideline, over 40 percent said they had considered suicide because their pain was poorly treated.

Most patients said they had been taken off opioids or had their doses reduced to comply with the  CDC guideline, which has been widely adopted throughout the U.S. healthcare system. Many patients say they can’t even find a doctor willing to treat them.

‘Making Plans to End This Life’

“I am scared to death as pain for me is unbearable. If I cannot get a prescription for relief I will probably be one of those (suicide) statistics because as far as I'm concerned, my quality life would be gone and no longer worth living. I will be sure to leave a note telling the CDC to go to hell too,” one PNN reader said.

“If my life is reduced to screams of agony in my bed while my father has to watch, if that happens and I can’t take anymore suffering, I will leave a note (probably a very long one), and in it I will say that the people who are making these guidelines into law, should be charged with my homicide,” another patient wrote.

“My suicidal ideation has increased exponentially. I have now resorted to cutting and punishing myself in order to distract from the physical chronic pain I suffer with,” said another patient. “I am struggling terribly and can’t even get sleep. I have been making plans to end this life and if the pain continues without treatment, it will not be hard to do.”

“My wife has been talking about suicide as the only option to escape her chronic pain and migraine headaches. I am starting to think the same thoughts,” wrote a man who also suffers from chronic pain. “Many chronic pain patients left without a doctor or opiate painkillers will commit suicide to escape the pain and suffering. My wife and I included.”

British Columbia Revising Its Guideline

The Canadian province of British Columbia was one of the first to adopt the CDC guideline as a standard of practice for physicians. In April 2016, British Columbia declared a public health emergency because overdose deaths from illicit fentanyl, heroin and prescription drugs were soaring. In response, the College of Physicians and Surgeons of British Columbia released new professional standards and guidelines that were closely modeled after the CDC’s.

Two years later, the British Columbia guidelines are now being revised because too many patients were being denied care or abandoned by doctors fearful of prescribing opioids.

“Physicians cannot exclude or dismiss patients from their practice because they have used or are currently using opioids. It’s really a violation of the human rights code and it’s certainly discrimination and that’s not acceptable or ethical practice,” college registrar Heidi Oetter told The Globe and Mail.

Under the old guidelines, British Columbia doctors were strongly encouraged to keep opioid doses below 90 milligrams of morphine a day – the same recommendation as the CDC’s. Now they’re being told to use their own discretion and to work with patients in finding an effective dose.

“Hopefully it’s clear to physicians that the college is really expecting that they exercise good professional discretion, that they are really engaging patients in informed consent discussions and that patients are really aware of the potential risks that are associated with opioids, particularly if they’re taking them in conjunction with alcohol or sedatives,” Oetter said.

Not only were the old guidelines harmful to patients, they were ineffective in reducing overdoses. British Columbia still has the highest number of overdoses in Canada, with 1,448 deaths last year.

Overdoses also continue to soar in the United States – mostly due to illicit fentanyl and other street drugs. Will the CDC change its guideline -- as promised -- because it is harming patients and failing to reduce overdoses?

"CDC will revisit this guideline as new evidence becomes available," the agency said in 2016. "CDC is committed to evaluating the guideline to identify the impact of the recommendations on clinician and patient outcomes, both intended and unintended, and revising the recommendations in future updates when warranted.”

Today’s report on suicides indicates the agency has no plans to do either.

VA Study Could Lead to More Cuts in Opioid Prescribing

By Pat Anson, Editor

A new study by a prominent think tank could give further ammunition to the Department of Veterans Affairs to reduce access to opioid pain medication in its healthcare system.

Researchers at the RAND Corporation studied data from nearly 32,500 patients who were treated at VA facilities in 2007 and were identified as having an opioid use disorder. The goal was to identify “quality measures” that could help reduce the death rate of addicted patients.

The researchers found that deaths were much lower among patients who were not prescribed opioids or anxiety medications, those who received counseling, and patients who had regular visits with a VA physician. They estimate the number of deaths could be reduced by a third if all three quality measures were adopted. 

"This is a very large drop in mortality and we need to conduct more research to see if these findings hold up in other patient care settings," said Dr. Katherine Watkins, a physician scientist at RAND and lead author of the study published in the journal Drug and Alcohol Dependence.

"But our initial findings suggest that these quality measures could go a long way toward improving patient outcomes among those who suffer from opioid addiction."

The findings suggest that a key to reducing mortality is to minimize the prescribing of opioid medication and benzodiazepines to veterans with opioid addiction. Benzodiazepines are a class of psychiatric medication used to treat anxiety disorders.

Because lower death rates were also associated with counseling and quarterly visits with a VA physician, researchers concluded that addicted patients benefit from making a connection with a caregiver, who can identify changes in their behavior and potential for relapse.

Surprisingly, patients in the study who were prescribed addiction treatment drugs such as Suboxone (buprenorphine) did not have lower death rates.

"We know from other research that medication-assisted therapy can help people stay off drugs, get jobs and lead more-productive lives," Watkins said. "But in this study, the treatment strategy was not associated with lower mortality."

The VA has already taken a number of measures to reduce opioid prescribing, including a new guideline that strongly recommends against prescribing opioids for chronic pain. VA physicians are also being urged not to prescribe opioids long-term to anyone under the age of 30. The guideline recommends exercise and psychological therapies such as cognitive behavioral therapy as treatments for chronic pain, along with non-opioid drugs such as gabapentin.

“We’ve been working on this now for seven years and we’ve seen a 33 percent reduction in use of opioids among veterans, but we have a lot more to do. We have a lot we can learn,” Secretary of Veterans Affairs David Shulkin told a White House opioid commission earlier this month. "At the VA, my top priority is to reduce veteran suicides. And when we look at the overlap with substance abuse and opioid abuse, it’s really clear.”

According to a recent VA study, an average of 20 veterans die each day from suicide, a rate that is 21 percent higher than the civilian population.  Veterans also suffer from high rates of chronic pain, depression and post-traumatic stress disorder.

Daughter Says Untreated Pain Led to Mother’s Suicide

By Pat Anson, Editor

Suicides are never easy to accept. Especially if they involve a loved one. Even more so if they could have been prevented.

Lacy Stewart says her mother never would have killed herself if she’d been given proper medical care for her chronic fibromyalgia pain.

“I feel angry about the way she was treated,” says Stewart, a registered nurse who believes the healthcare system not only failed to treat her mother, but drove Marsha Reid to suicide at age 59.

“Her life was taken from her is the way I feel,” says Stewart. “I know it was. A person can only handle so much pain for so long. It takes its toll on every area -- your mind, your body, everything. And she just couldn’t do it anymore. She’d had enough. Because nobody would help her. Nobody.” 

Stewart says her mother was fit and physically active – handling all the chores at her 10-acre farm in north Texas -- until she slipped on ice and landed hard on her face in 2009. Reid broke a few teeth and sustained nerve damage in the fall -- injuries that evolved into the classic symptoms of fibromyalgia: chronic widespread pain, anxiety, fatigue, insomnia and depression.

“Of course she sought out help. Searching for doctors that would take her on, she encountered road block after road block. Many doctor’s offices would just flat out say, ‘We don’t take fibromyalgia patients,’” recalls Stewart.

“So you take that and couple it with the fact that pain medication is often required for these patients and now the CDC has regulations that deter a physician from wanting to prescribe pain medication at all and you end up here. Zero help for a woman suffering day in and day out for all these years. She lost her job, her home, her independence.”

MARSHA REID AND DAUGHTER LACY

In January, Reid checked into a hotel room and tried to kill herself by taking a full bottle of Xanax. The failed suicide attempt left Reid even more depressed and her health deteriorated further. She started having hallucinations, hearing voices and seeing dead people.

In July, Stewart drove her mother for five hours to see a pain management doctor.

“I was appalled at the treatment from the physician. We explained the pain and the issues with her mind, and he said he could only treat one or the other. Not both! Not the whole patient! When I brought up pain medication you would have thought I had asked him for heroin,” says Stewart.

“I'll never forget the conversation I had with him in the hall on the way out. I looked him in the eye and said the pain is so severe she will kill herself! It’s only a matter of time. He basically said his hands were tied because of the regulations and what I was asking was for him to lose his license! I was furious and felt betrayed by the field I loved, medicine.”

One treatment was suggested for her mother.

“They wanted her to go to water aerobics,” said Stewart. “The woman could barely take a bath and they wanted her to go to water aerobics! I read in the CDC (opioid) prescribing guidelines that they wanted doctors to use alternative measures for pain relief such as water aerobics and physical therapy. They never spent a day in pain in their lives, obviously. Because then they would know that is ridiculous. It’s almost a joke to me, the guidelines that I have read.”

Crisis in Pain Care

In recent months, Pain News Network has been contacted by dozens of pain patients who say they are contemplating suicide. It’s not just the difficulty in getting opioid pain medication. The growing crisis in pain care has reached a point where many patients are unable even to get a doctor’s appointment.

“I have been on a wait list for pain treatment for a year now. I am suffering needlessly and am questioning my ability to be able to live like this much longer,” said Isabel Etkind, a Connecticut woman who suffers from severe arthritis pain.

“I don't want to die but I can't live like this either. I know that many other people are experiencing the same thing, but knowing that does not really help! It is inhumane and cruel to treat people this way. If I were a dog, cat or horse, the animal rights people would be all over it, but torturing humans is OK. As is usually the case, the elderly, the military and the poor are suffering the most.”

Another woman, who suffers from chronic back pain, asked that we not use her name. She works in the emergency room of a hospital in southern California that recently adopted a policy of not prescribing opioids unless all other pain treatments have failed.

“Since November 1, we have seen a huge increase in overdoses from street drugs. Nearly all of these patients are chronic pain sufferers who are now getting their medications off the streets. A 33-year old fibromyalgia patient died from fentanyl overdose this week,” she wrote to PNN. “I understand the desperation these patients feel and try to educate the ER doctors about chronic pain from a layman's point of view. This new effort to stigmatize and demonize chronic pain sufferers has got to stop!

“We have full time jobs, pay mortgages, raise families. All this, while in levels of pain that normal people couldn't handle. We hate having to be chained to pill bottles and doctors and pharmacists. What other choice do we have? Curl up and die? I hope the new Trump administration will appoint people to DEA and CDC who will think of us as humans and help us instead of hurting us.”

Suicides Increasing

According to the CDC,  suicides increased by 24 percent from 1999 to 2014, and are now the 10th leading cause of death in the United States.  

In 2014, nearly 43,000 Americans killed themselves, three times the number of deaths that have been linked to prescription opioid overdoses.  

Marsha Reid died of a self-inflicted gunshot wound on November 2, leaving behind a grief stricken daughter who will always wonder if things would have turned out differently if her mother had gotten the pain treatment she needed

“She talked about this a lot, about suicide. That was her plan. She couldn’t deal with this much longer. And that’s what breaks my heart the most is that I was unable to help,” says Lacy Stewart.

“Just mention the heartache she has left behind. Because if another fibromyalgia patient is out there contemplating this and they come across this story, I want it noted that I lost my mom forever and I’m 32 years old. And I’ll never have her back.”

MARSHA REID

Did Untreated Pain Lead Veteran to Commit Suicide?

By Pat Anson, Editor

Two congressmen are asking for an investigation into the apparent suicide of a Navy veteran suffering from chronic back pain outside a veteran’s hospital in New York.

76-year old Peter Kaisen of Islip was found dead inside his car in a parking lot Sunday at the Veterans Affairs Medical Center in Northport. He suffered a fatal gunshot wound to the head.

Kaisen’s wife told Newsday that he suffered from back pain and was unable to sit for more than a few minutes. She said doctors at the VA hospital told her husband there was nothing more they could do to ease his suffering.

The VA this year implemented the Centers for Disease Control and Prevention’s opioid guidelines, which discourage doctors from prescribing opioid pain medication for chronic pain. Since those guidelines were adopted, several veterans have complained to Pain News Network that their opioid doses have been reduced or stopped altogether. It's not clear if that's what happened to Kaisen.

The VA provides health services to 6 million veterans and their families. Over half of the veterans treated by the VA have chronic pain.   

A longtime friend and fellow veteran told the Associated Press that Kaisen visited the VA hospital once or twice a month. He lives about 30 miles away.

"We all think there is probably some depression," said Tom Farley said. "Maybe he wanted meds. Maybe he wanted to sit and talk. I don't know. None of the family knows."

A spokesman for the hospital declined to discuss Kaisen's medical history, but said the hospital had no evidence that he sought treatment at the emergency room on the day he died.

"The Northport VA stands ready to cooperate with any investigative body that believes more information is needed," the hospital's director, Philip Moschitta, said in a statement. "At no point did the staff in this facility fail to do the right thing by our patients."

PETER KAIsEN

But two hospital employees told The New York Times that Kaisen had been frustrated he could not see a doctor in the emergency room, where he went to seek help related to his mental health.

“He went to the E.R. and was denied service,” one employee said. “And then he went to his car and shot himself."

“Someone dropped the ball. They should not have turned him away,” another worker said.

Congressmen Peter King and Steve Israel sent a letter to the FBI and the Department of Veterans Affairs on Thursday asking for a "transparent" investigation into Kaisen’s death.

"It is critical that our nation's veterans feel they can trust the services provided by their VA medical facilities, and that their health and wellbeing is of the upmost priority," they wrote.

Kaisen’s wife told Newsday her husband served on a Navy supply ship, the USS Denebola, from 1958 to 1962.

According to a 2014 Inspector General’s study, more than half of the veterans being treated at the VA have chronic pain, as well as other conditions that contribute to it, such as post-traumatic stress disorder.

Because veterans are at high risk of opioid abuse and overdose, the VA implemented an Opioid Safety Initiative in 2013 to discourage its doctors from prescribing the drugs. The number of veterans prescribed opioids fell by 110,000, but alarms were raised when some vets turned to street drugs or suicide to stop their pain.

According to a VA study released in July, an average of 22 veterans commit suicide each day.

 

Patients Predict More Drug Abuse Under CDC Guidelines

By Pat Anson, Editor

Guidelines for opioid prescribing being developed by the Centers for Disease Control and Prevention (CDC) will worsen the nation’s drug abuse problem and cause even more deaths, according to a large new survey of pain patients. Many also fear they will lose access to opioids if the guidelines are adopted.

Over 2,000 acute and chronic pain patients in the U.S. participated in the online survey by Pain News Network and the Power of Pain Foundation. Over 82 percent said they currently take an opioid pain medication.

When asked if the CDC guidelines would be helpful or harmful to pain patients, nearly 93% said they would be harmful. Only 2% think the guidelines for primary care physicians will be helpful.

Nearly 90% of patients said they were “very worried” or “somewhat worried” that they would not be able to get opioid pain medication if the guidelines were adopted.

“Over 2,000 pain patients participated in our survey – an indication of just how seriously many of us take the CDC’s proposed guidelines,” said Barby Ingle, president of the Power of Pain Foundation.

DO YOU THINK THE CDC GUIDELINES WILL BE HELPFUL OR HARMFUL TO PAIN PATIENTS?

“We are the ones feeling the pain daily, minute by minute. We are the ones who these guidelines will affect. Even if the guidelines are not law, other agencies, providers and insurance companies will adopt them. There is already an issue with patients receiving proper and timely care across the country, and this will add to the crisis in pain care that already exists.”

The draft guidelines released last month by the CDC recommend “non-pharmacological therapy” and other types of pain relievers as preferred treatments for chronic non-cancer pain. Smaller doses and quantities of opioids are recommended for patients in acute or chronic pain.  A complete list of the guidelines can be found here.

Although the goal of the CDC is to reduce the so-called epidemic of prescription drug abuse, addiction and overdoses, a large majority of pain patients believe the guidelines will actually make those problems worse – while depriving them of needed pain medication.

“I've been closely monitored by a pain management specialist and successfully taken opioids for over 10 years with no abuse or addiction issues,” said one patient. “They have saved my life, independence, and improved my quality of life and daily function. Now I'm terrified of going back to the pain I endured for years.”

“Some pain patients may turn to the streets for relief, if they can afford it,” said another.

“Attempted suicide, pain and withdrawal symptoms would be a major epidemic,” predicts one patient.

“The level of functioning afforded me through pain medication will greatly diminish or disappear, along with an unbearable increase in pain levels. I will either seek pain relief via medical marijuana or consider ending my life,” said one patient.

 “This is absurd. Why is it assumed that anyone who has a prescription for opiate medication is going to sell it or become addicted?” asked another patient.

When asked to predict what impact the guidelines will have on addiction and overdoses, over half said they would stay the same and over a third said they will increase. Less than 5% believe the CDC will achieve its goal of reducing addiction and overdoses.

"There will be a higher incidence of abuse and addiction. People will continue to find ways to get the medication that works for them. Without appropriate supervision, abuse, addiction and overdose will actually increase," said one patient.

"I have a friend who eventually became addicted to heroin when NY state made it hard for her to get tramadol. It was easier for her to get street drugs for her back injury pain," said another.

WHAT IMPACT WILL THE CDC GUIDELINES HAVE ON ADDICTION AND OVERDOSES?

"I believe the CDC should stick to their title, Centers for "Disease" Control. There are many areas of research desperately needed much more than new rules to control a doctor's ability to properly treat and manage chronic pain patients," one respondent said.

Asked what would happen if the guidelines were adopted – and given the choice of various scenarios – large majorities predicted more suffering in the pain community, as well as suicides, illegal drug use and less access to opioids. Only a small percentage believe patients will exercise more, lose weight and find better alternatives to treat their pain.

  • 90% believe more people will suffer than be helped by the guidelines
  • 78% believe there will be more suicides
  • 76% believe doctors will prescribe opioids less often or not at all
  • 73% believe addicts will get opioids through other sources or off the street
  • 70% believe use of heroin and other illegal drugs will increase
  • 60% believe pain patients will get opioids through other sources or off the street
  • 4% believe pain patients will find better and safer alternative treatments
  • 3% believe fewer people will die from overdoses
  • 1% believe pain patients will exercise more and lose weight

CDC officials and many addiction treatment experts contend that opioids are overprescribed – leading to diversion and abuse -- and that other types of pain medication or therapy should be “preferred” treatments for chronic pain.

But over 58% of the patients who were surveyed disagree or strongly disagree with the statement that opioids are overprescribed. Less than 16% agree or strongly agree that opioids are overprescribed.

Many patients said they were already having trouble obtaining opioid prescriptions.

"People are UNDER MEDICATED not getting relief. I do not believe addiction is a factor, I think people are not getting what they need, period!" wrote one patient.

"It's already very difficult to get any prescription pain meds that actually help reduce pain. With these changes many will suffer. Why should people who truly have chronic pain be penalized due to others abuse of their meds?" asked another patient.

DO YOU AGREE THAT OPIOIDS ARE OVERPRESCRIBED?

"It is already difficult to get my prescriptions that I have been safely using for years. If these additional restrictions of prescriptions, need for monthly doctor visits, etc. are put into place. I will only suffer more," wrote another patient. "Legitimate pain patients are not the problem, yet are greatly impacted by guidelines such as this. I ask that the CDC PLEASE consider unintended consequences for legitimate patients before they implement these recommendations. This could be tragic."

To see what pain patients are saying about the effectiveness of therapies recommended by the CDC, click here.

For a complete look at all of the survey result, visit the "CDC Survey Results" tab at the top of this page or click here.