When Brenda Sutherland stepped up to renew her prescription for her pain medications at a local drug store, she said the pharmacist sneered and made comments about "all of her drugs."
"He immediately copped an attitude," the Puyallup resident said. "He started asking me a bunch of personal questions about my medical history. His job is just to fill prescriptions."
He didn't lower his voice and made his opinion known to all who were in earshot.
Sutherland is a local leader for the Power Over Pain Action Network (POPAN) in Washington. She recently returned from Baltimore where she attended training courses with the American Pain Foundation, a pain advocacy group working to remove barriers to providing medication to Americans in chronic pain and remove the stigma of opioid drugs.
Sutherland later called the pharmacy to complain and received an apology. But she had already been publicly humiliated.
"He had no right to stand there in front of other people and discuss my medical problems," she said. "He had the attitude that I was drug seeking."
She hopes to help others avoid the same difficulties and embarrassment.
Some health care organizations are currently seeking to put a cap on the amount of certain drugs dispensed to patients. The Opioid Guidelines limit the dosage of opioids to non-cancer patients. The guidelines were developed by the medical directors of Labor and Industries (L&I), the Department of Social and Health Services (DSHS) and the Health Care Authority.
Sutherland said the guidelines were set based on a study that found that 4 percent of people on opioids died from an overdose.
"Four percent is a very small percentage," she said. "And most of those people were using methadone. But what about all the people who are compliant?"
Sutherland feels that the nation's war on drugs focuses on a small percentage of people and like the war on terror, spills over onto the general population. In essence, the majority is paying for the evil deeds of a handful of people by having to deal with red tape, harassment and paranoia.
"There are 76 million people in chronic pain in America," she said. "They're bunching people with pain into the war on drugs. Barriers to treatment can cause diseases to worsen. Limiting access to pain medication is putting people in wheelchairs."
Sutherland's story began six years ago in Idaho when what started out as a simple sprained ankle turned into a medical nightmare. She developed RSD, reflex sympathetic dystrophy, in her leg which eventually spread to the other leg.
"RSD causes the sympathetic system to go wacko," she said. "The sympathetic system controls blood pressure, veins and blood flow. With RSD, the system has a hyper-reaction to injury, releasing so many endorphins that it ends up doing damage, causing legions and destroying muscles."
Dionetta Hudzinski, a state leader for POPAN and incoming president of the Washington-Alaska Pain Initiative, said that although opioids, the class of drugs that includes heroin and morphine, have been used for centuries as painkillers, Washington State has historically been "opiophobic."
"We tried to stop that kind of thinking in the '90s," she said. "But it has resurfaced with these new guidelines. Physicians are afraid to dispense opioids, thinking that if they order X milligrams they'll be investigated."
John Loeser, Professor of Neurological Surgery and Anesthesiology at the University of Washington, said that back in the 1960s, '70s and early '80s, the medical community saw a tremendous number of patients fail to improve who were taking a significant amount of narcotics.
"The thought was the way to get people better was to get them off narcotics," he said. "A certain percentage of those people got better."
Loeser said that changed when a New York doctor, Russell Portenoy, promulgated the idea that pain patients were being under-treated.
"In the '80s and '90s we saw a complete turnaround," he said. "Then the general philosophy was that anyone who wants narcotics could have them."
Loeser said the Opioid Guidelines that have stirred up such a huge furor are actually very benign.
"They don't say that patients can't have pain medications, they don't say that," he said. "They say that if a patient is being given more than 120 milligrams of morphine or its equivalent then a consultation with a pain specialist is required."
The problem is there is a huge shortage of pain specialists, Loeser said.
"There aren't enough pain specialists to begin to meet this mandate. It usually requires residency of a year in an accredited pain fellowship program."
This became Sutherland's problem when she and her husband returned to Washington.
"Many doctors are not educated on how to treat pain," she said. "And if limitations are placed on medications, they'll become fearful that they can only write so many prescriptions before they are put on a 'hot' list."
"Physicians won't put up with that," Loeser said. "Doctors are saying we don't want to deal with this nonsense. Now we're finding that doctors are refusing to prescribe narcotics."
"There's an increasing fear amongst physicians and health care providers when people are being labeled as addictive," Hudzinski said. "The 120 milligram limit is just an arbitrary number. Decreasing the amount of milligrams is not going to stop diversion."
Hudzinski explained that diversion is when legally prescribed drugs are diverted to other people not named on the prescription, and therefore, become street drugs.
"There is no scientific proof that decreasing the amount of milligrams prescribed will stop diversion," she said. "What we do know is that drug addicts and diverters will find it somewhere else - they always have. We do know that pain patients are going to suffer from not getting the medication they need."
Hudzinski said that judicial uses of the term "narcotics" have resulted in a negative image of opioids, even as painkillers.
"The definitions get blurred by physicians because they are in the same class of drug as street drugs so they've been demonized," she said. "Addiction is a psychological condition where a person has lost control over the use of it. They're constantly thinking about where they are going to get it. Pain patients don't do that. They're not going to shoot somebody, steal or harm somebody else to get their fix."
Hudzinski said the health care system needs to find a more balanced approach to dealing with pain management issues and street drug addiction.
"This won't solve either problem," she said. "The addicts will find a way to get it. They'll find it in the jungles, they'll make it themselves. Our real concern as pain advocates is that we don't want to see people suffer because we have this other problem."
Loeser said there is inconclusive data to support the effectiveness of high amounts of pain medication.
"I see lots of people who come in to get their prescriptions of 20 to 60 milligrams of morphine, or the equivalent, every day and they tell me their pain is under control," he said. "Then I see people taking in between 300 and 3,000 milligrams per day and I've never seen one tell me they're pain-free. Underlying this is the recognition that not all pain problems respond to narcotics, so the prescriptions get pushed up and up. We are forced to make decisions in the absence of good knowledge."
Loeser feels that part of the problem is the health care system itself.
"There is a big problem out there. We just don't know what the answers are. Nobody seems to want to fund the research that needs to be done. We have divorced the cost of health care from the cost of being disabled."
In essence, the doctor believes that how the opioid situation is perceived depends on who the observer is.
"Those concerned about high doses of opiates see only the problem," he said. "And those that think everybody is doing wonderfully will see only the successes. The truth probably lies somewhere in between."
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