Chronic pain sufferers advocate against stigma of prescription pain meds

MIDDLETOWN, Conn. — For chronic pain sufferers, there is a real problem with the abuse of painkillers in the United States. While the number of patients who have a legitimate need for prescription painkillers — 100 million plus — is vastly more than the number of people addicted to painkillers — 11 million — there is a stigma attached to the prescribing, dispensing and utilization of pain medicines. And that stigma has created an, at times, insurmountable hurdle that leaves legitimate patients suffering in silence.

“The person seeking relief from pain is not [suffering] from the same disease as a person who is an addict,” said Paul Gileno, president of the U.S. Pain Foundation. “Two separate diseases … [But] it’s hard to decipher because right away [people associate] pain patients with that group of addicts.”

According to a 2011 report from the Institutes of Medicine, more than 100 million Americans suffer from chronic pain. Of those, 25.8 million suffer chronic pain from diabetes, 23.3 million suffer chronic pain from a cardiovascular event, and 11.9 million suffer chronic pain from cancer.

Conversely, the number of abusers totals 11 million, according to a May 2014 report in JAMA Internal Medicine. Of those, 55.5% are men, 32.1% are between the ages of 18 and 25, and 58.5% make less than $50,000 each year. Only 12% of Americans older than the age of 50 — an age group arguably more closely associated with diabetes, cardiovascular disease and cancer — abuse painkillers for nonmedical purposes.

“Out of those 11 million who are abusing pain medications, we don’t know that they’re coming out of the 100 million Americans [with chronic pain], because we don’t know if they’re legitimate pain patients at the start,” Gileno said. While there is certain to be some overlap, the 11 million may simply represent addicts who have chosen pain medicines as their conduit to get high.

But the media focus has historically been on the addicts and how to curtail their access to the pain medicines they crave. That creates a real stigma that inhibits access for legitimate patients from doctors to pharmacists to the patients themselves.

“Doctors are limiting prescribing because of the stigma,” Gileno said. “[And] pharmacies are either not carrying products or questioning patients on their prescriptions even though they have a legitimate [need].” The stigma associated with pain medicines even extends to patients, with many patients worried that they may become an addict because they’ve been prescribed an opioid to address their chronic pain. “They listen to the media instead of their doctor,” he said, and forego the appropriate care.

According to a recent analysis from the Centers for Disease Control and Prevention, only 27% of the highest risk painkiller users get opioids through their own prescriptions. They are about four times more likely than the average user to buy the drugs from a dealer.

Researchers analyzed data for the years 2008 through 2011 from the Substance Abuse and Mental Health Services Administration’s National Survey on Drug Use and Health. Other major sources of opioids for frequent nonmedical users include obtaining drugs from friends or relatives for free (26%), buying from friends or relatives (23%) or buying from a drug dealer (15%).

In an effort to abate the stigma associated with legitimate use of pain medicines, the U.S. Pain Foundation fields some 200 “Pain Ambassadors” who make up a grassroots education campaign — first, that chronic pain sufferers have both legitimate needs for and significant hurdles in acquiring their pain remedies, and second, that there are market-driven options available, such as abuse-deterrent medicines. “For us, as a patient advocacy group, that’s what we need to do,” Gileno said. “An educated patient is an empowered patient. An empowered patient is a better patient for a doctor because the doctor can actually help them on their journey to get them the answers they need.”