Survey Finds CDC Opioid Guidelines Harming Patients

By Pat Anson, Editor

The CDC’s opioid prescribing guidelines have harmed chronic pain patients, reduced access to pain care, and failed to reduce drug abuse and overdoses, according to a large new survey of patients, doctors and healthcare providers. The survey also found signs of a dramatic shift away from opioid prescribing over the past year.

Today marks the one-year anniversary of the guidelines, which discourage the prescribing of opioid medication for chronic pain. The guidelines are meant to be voluntary and only intended for primary care physicians, but are being widely implemented throughout the U.S. healthcare system and having many unintended consequences.

According to the survey, over 70 percent of pain patients say they are no longer prescribed opioid medication or are getting a lower dose. While reducing opioid prescriptions may have been the ultimate goal of the guidelines, it came with a heavy price: Eight out of ten patients say their pain and quality of life are worse. Many are having suicidal thoughts, and some are hoarding opioids or turning to illegal drugs for pain relief.

“I had a doctor pull me off methadone cold turkey after taking it successfully for 15 years for no reason other than the CDC's guidelines. I was in the worst pain of my life,” said one patient.

"The CDC needs to stop practicing medicine without a license. They are hurting more chronic pain patients than they are helping," said another.

"These guidelines are so incredibly wrong. People are already suffering, myself included. And it's going to get so much worse," predicted one patient.

“The ‘War on Drugs’ has devolved into a war on patients,” wrote a primary care doctor. “The government should spend its time, effort, and money on research to find a pain treatment with fewer harmful effects than narcotics and butt out of the doctor-patient relationship.”

HOW HAVE THE CDC GUIDELINES AFFECTED YOUR OPIOID PRESCRIPTIONS?

The online survey of 3,108 pain patients, 43 doctors and 235 other healthcare providers was conducted between February 15 and March 11 by Pain News Network and the International Pain Foundation (iPain).

“This survey shows that patients and providers are in agreement about the harm the guidelines have caused since their release last year,” said Barby Ingle, president of iPain. “When we have government agencies or insurance companies impose poor practices on the pain community, we see failure. A failure to stop abuse and overdoses, hoarding behaviors by well-intentioned patients, increased use of illegal drugs and, worst of all, suicides increase.”

There was broad agreement between patients, doctors and healthcare providers that the guidelines have been harmful to patients. When asked if the guidelines had improved the quality of pain care in the United States, over 90 percent said no.

"I have been on a high dose of opioids for twenty years. I was having a quality of life and enjoyed living. Now I want to die every day. I am in excruciating pain and have no quality of life. I am on more drugs than ever and all I want is to die," said a patient..

“Not only do I have less pain relief but I am not able to be as active and am sad and frustrated about that. Something has to change, what’s happening is not sane or humane,” wrote a fibromyalgia sufferer.

HAVE THE CDC GUIDELINES IMPROVED THE QUALITY OF PAIN CARE?

Eight out of ten respondents said the guidelines have not been successful in reducing opioid abuse and overdoses. That view is supported by recent reports showing that opioid overdoses are soaring around the country, and are now being driven primarily by heroin and illicit fentanyl, not prescription painkillers. 

Some patients admit they are turning to the black market for pain relief.

"Eleven of the 36 people in my support group have admitted using illegally obtained pain medication. Three of those have resorted to heroin because it is cheaper," one patient said.

“I was able to find illegal sources of medication. However, the prices are high. I have been trying to avoid heroin but I may have to make a switch in the future if I don't find another doctor to manage my pain,” said another patient.

"My pain clinic sent a letter to all of their patients stating they would no longer prescribe opiates,” said a patient. “No other practice would accept me in the area so I have been able to obtain my former meds through the black market. The prices are high and I am tempted to move to heroin as it's much less expensive.”

HAVE THE CDC GUIDELINES BEEN SUCCESSFUL IN REDUCING OPIOID ABUSE AND OVERDOSES?

"I have found a source of illegal hydrocodone that I have been testing (making sure not laced with fentanyl) in extremely small does. If that turns out clean I will move to the black market for my drugs since it will end up cheaper," another patient wrote.

Over the past year, patients reported many negative consequences from the guidelines, with very few positive outcomes – such as finding safer and more effective treatments.

• 84% say they have more pain and worse quality of life
• 42% have considered suicide because their pain is poorly treated
• 22% are hoarding opioids because they’re not sure of future access
• 20% say insurance refused to pay for a pain treatment they needed
• 19% say a pharmacy refused to fill their opioid prescription
• 11% have obtained opioids illegally for pain relief
•   4% found better and safer treatment than opioids
•   4% were given a referral for addiction treatment
•   4% were discharged by a doctor for failing a drug test
•   1% found that they don’t really need opioids

Suicidal thoughts and an increasing sense of desperation were common in many of the patient’s answers.

“My neighbor poured gasoline over her head and set herself on fire and died because she could not get any pain relief. To me it’s the same as taking chemo and radiation away from a cancer patient," said one patient.

"Should be very careful who they kick off meds. A friend hung himself in the bathroom, another lost his job and went homeless. I live in fear," said another.

"People are killing themselves because their chronic pain isn't being treated, and I become closer and closer to being one of those people," wrote another patient.

"So far I have lost three friends with chronic pain to suicide. I bet the CDC sees that as a win. Three less people to deal with. Bullets are cheaper than dealing with their chronic pain. It’s become a joke," a patient said.

To see a story on the impact the guidelines are having on doctors, providers and the availability of pain care, click here.

To see the complete survey results, click here.