TUESDAY, April 9, 2019 (HealthDay News) — People with severe pain from cancer or sickle cell anemia should not be denied coverage for opioid painkillers, a new clarification on federal guidelines states.

In the wake of the national opioid epidemic, various medical societies had encouraged doctors to rein in prescriptions for the powerful painkillers.

In 2016, the U.S. Centers for Disease Control and Prevention published guidelines that said for most patients seen by primary care doctors, opioids should be a last resort.

But there has been an unintended consequence: Some insurers have refused to pay for prescriptions for patients with cancer or sickle cell anemia, or for cancer survivors with complicated chronic pain conditions.

The new clarification was issued in a letter from the CDC to three medical societies who’d brought the insurance problem to the agency’s attention — the American Society of Hematology, the American Society of Clinical Oncology (ASCO) and the National Comprehensive Cancer Network.

The letter, released Tuesday, stresses that the guidelines weren’t intended for patients undergoing cancer treatment.

Beyond that, the letter says, the guidelines weren’t designed to “deny any patients who suffer with chronic pain” the option of opioid medications.

Dr. Deepika Darbari, who is with the hematology society, treats young patients with sickle cell anemia at Children’s National, in Washington, D.C. She said she’s come up against the insurance barrier herself — namely, plans that refused to pay for IV opioids for patients hospitalized with severe pain episodes.

And they’ve cited the CDC guidelines as the reason, Darbari said.

Sickle cell anemia is an inherited disease that causes red blood cells to be crescent-shaped, rather than disc-shaped. The cells also become “sticky” and prone to clotting. Because of poor blood circulation, patients can suffer periodic pain “crises.”

Over time, Darbari explained, sickle cell anemia can cause chronic pain by damaging organs and joints throughout the body.

Patients can first try other pain relievers, like acetaminophen (Tylenol) and ibuprofen (Motrin, Advil), along with nondrug therapies, according to Darbari.

But, she said, some need oral opioids, like Vicodin or OxyContin. And for severe pain episodes, patients may need to be hospitalized and given IV opioids.

The CDC agreed that managing sickle cell pain is complicated. The agency stated in its letter that treatment decisions — and reimbursement — should be based on medical guidelines created specifically for the disease.

Then there is the issue of cancer survivors who suffer lasting pain related to their treatment.

The CDC guidelines specifically said they do not apply to cancer patients undergoing “active treatment.”

“But where does that leave cancer survivors?” said Judith Paice, the lead author of ASCO’s guidelines on treating survivors’ pain.

More and more people are surviving cancer, Paice said — and that means more people living with aftereffects of treatment, which can include chronic pain. Some cancer treatments damage the nerves, for example, leaving people with a form of pain called neuropathy.

Another example, Paice said, relates to the aromatase inhibitors that breast cancer survivors may take for years to cut the risk of recurrence. They can cause chronic joint and muscle pain.

“We have many different options for addressing pain in cancer survivors, and opioids are one,” Paice said.

The CDC guidelines, she noted, were aimed at primary care doctors treating more common problems like lower back pain. Complex pain conditions, like those in cancer survivors, are different, Paice said.

In its letter, the CDC acknowledged that pain in cancer survivors is “unique,” and that guidelines from groups like ASCO offer “useful guidance” on treatment.

Commenting on the letter, the trade group America’s Health Insurance Plans (AHIP) said that health insurance policies have “always” recognized that patients under active cancer treatment do not fall under the CDC guidelines.

Beyond that, the AHIP said, “health insurance providers cover comprehensive, effective approaches to pain management that include evidence-based treatments, more cautious opioid prescribing, and careful patient monitoring.”

The CDC’s letter will be publicly available online, and Darbari said that doctors and patients can cite it if they run into problems with insurance coverage.

Paice called the letter “a beginning.” But she also said the problem is broader: Even when patients are not denied coverage, insurers put up cumbersome prior authorization requirements for opioids — even for refills.

“That can leave chronic pain patients without any medicine,” she said.

Paice said she reminds patients not to wait until their pills are almost gone to get a refill — since they may face delays.

More information

For advice on insurance coverage issues, visit the Patient Advocate Foundation.