Doctors are misusing 2016 opioid pain medication guidelines, federal officials said Wednesday, a clear response to increasing complaints from chronic pain patients who say they are the victims of an overreaction to the opioid crisis.

The Centers for Disease Control and Prevention, in new guidance for opioid prescribing, said many physicians were guilty of a "misapplication" of 2016 guidelines that clamped down on the use of opioids. The new guidelines, published in the New England Journal of Medicine, was the latest federal acknowledgement that many physicians' responses to the opioid crisis went too far.

Former Food and Drug Administration commissioner Scott Gottlieb, a physician, spoke out last July about the impact the opioid crisis response had on pain patients when he called for development of more options.

Until then, people in the middle of cancer treatments, having "acute sickle cell crises" or with pain after surgery shouldn't be affected by the earlier recommendations, CDC said. These patients were outside the scope of the guidelines, which were intended for primary care doctors treating chronic pain patients, CDC said.

Doctors that set hard limits or cut off opioids are also misapplying the government's guidance, CDC said.

Doctors should prescribe the lowest effective dosage and avoid increasing it to 90 "morphine milligram equivalents" a day or "carefully justify" any decision to raise the dose to that level.

If doctors are already prescribing opioids at higher dosages – at or above the 90 MME limit – they should continue doing so if needed, CDC said.

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CDC also warned against suddenly tapering or discontinuing opiods to reduce the risk of severe withdrawal symptoms including "pain and psychological distress."

Policies that mandate hard limits conflict with the guidelines' emphasis on individualized assessment of the benefits and risks of opioids given the specific circumstances and unique needs of each patient, CDC said.

Along with doctors reducing their dosages or refusing to continue prescribing opioids, many pain patients have lamented that they lost their doctors altogether after convictions and couldn't find new ones willing to treat this pain.

Patients shut out

Lauri Nickel, 62, of Tempe, Arizona, said too many of her fellow pain patients have been shut out of needed relief because practices have closed or doctors have been disciplined.

Lauren Deluca, a disabled chronic pain patient, runs Chronic Illness Advocacy and Awareness Group out of her home in Worcester, Massachusetts. She heralded the new guidelines, which she has been urging for more than two years but worries that without mentioning palliative care, it won't help people like her.

She has pancreatitis and a condition affecting her arteries that forces her to use a feeding tube about 90% of the time. She will never get better and will always need pain medicine to "manage the symptoms."

Still, she applauds CDC's move to allow high doses of opioids and to warn against tapering patients off their medications against their will.

"It's a fair and balanced step toward correcting what happens, but now there needs to be widespread education about the changes," Deluca said.

CDC said it plans to promote the guidelines using easily understood language and educational materials.

The revised guidelines may not help pain specialists who face discipline over prescribing pain medication, says former Roanoke, Virginia, family doctor Linda Cheek. She was convicted of charges relating to improper prescribing and served more than two years in prison and four months home confinement after being convicted

“The elephant in the room is the fact that doctors are being prosecuted for doing their jobs,” Cheek said.

She now runs a website called Doctors of Courage, which includes posts about the “injustice against medical professionals and chronic pain patients.”

Alternatives are needed

The more than 50 million chronic pain patients in the U.S. need more alternatives to opioids, said Christine Lemke, co-founder of the virtual health research company Evidation. Lemke, who has an autoimmune arthritis disorder that affects her whole body, said she is currently using diet and exercise to address her pain. She stopped using opioid pain medications years ago.

Her company is studying 10,000 chronic pain patients to try to quantify pain, which will help other companies develop treatments. She notes there have only been five new pain medications approved in the last 10 years.

"I've never met anyone who’s wanted to be on an opioid," Lemke said. "There's a lack of innovation in pain, but measures don't exist to quantify pain properly."

Insurers also are crafting policies and discourage inappropriate prescriptions of opioid such as OxyContin and Percocet.

America’s Health Insurance Plans, the lobbying group for commercial health insurers, unveiled a new strategy that aims to help doctors and patients manage chronic lower-back pain without using opioids. Among the group’s goals: Build a consensus on how to measure effective pain care using non-opioid therapies and better coordinate care among pain specialists and primary-care doctors.

AHIP also says it will work to expand the access to medication-assisted treatments that help wean people off of highly-addictive pain medications.

Along with warning doctors against too much caution, CDC underscored the need for several safeguards. It recommended doctors:

• Avoid prescribing opioid pain medication and benzodiazepines – such as Xanax – together whenever possible.

• Expand the use of non-opioid treatments.

• Review risks of continuing on high-dose opioids – with empathy

• Work with patients who agree to taper to individualize, minimize withdrawal.

• Monitor patients on high-dose opioids to prevent overdose.

Nickel struggles with back pain and multiple chronic health conditions and takes opioids as prescribed. She said her pain level has increased, but she refuses to ask for more or stronger pain pills. For example, she was prescribed Tylenol for pain relief as she recovered from extensive oral surgery that included two root canals, fillings and several crowns.

“I do not ask for what I need because I don’t want to call attention to myself or my doctor,” Nickel said. “You become conditioned to almost being treated like a second-class citizen.”

