The stories are widespread and persistent: pain patients being denied opioid medications by pharmacies or being left untreated by doctors.
We’ve written about it, many times, and readers like Carla Teegarden have lived through it.
“I did everything they told me to, suffered the embarrassment of pain management where you sign contracts, get your photo taken and drug tested like a criminal,” said Teegarden, a fibromyalgia sufferer who shared her story after reading Colleen Sullivan’s column about being humiliated by a pharmacist.
“I had my primary care doctor who has been treating me for close to 30 years dump me because he ‘didn’t know what to do for me’. He didn’t want to be bothered.”
Physician abandonment is a sensitive topic in the medical community, but it’s not one that’s being ignored. It was the subject of the keynote address by Steven Passik, PhD, at PAINWeek in Las Vegas, a national conference attended by 2,000 practitioners in the field of pain management.
Passik calls pain patients who are unable to get treatment or get their prescriptions filled “opioid refugees”.
“Its not an easy subject to research and you have to read between the lines a little bit,” Passik told National Pain Report. “It’s not like its all over the medical journals, patients getting turned away and, I hate to use the word, because its a very charged word, but abandoned.”
Passik, who is a pain psychologist, has treated some of those “refugee” patients himself. Some crossed state lines to see him at his former practice in Tennessee, to get the opioid prescriptions they couldn’t get in Kentucky. He says many were fearful, including one cancer patient who worried her pain would go untreated after surgery.
“Should people in 2013 be worried about having to have a surgery, particularly a cancer surgery, with fears they won’t get their pain treated afterwards? She actually considered not having the surgery because of her concerns about that,” Passik recalls.
He says the problem stems from “hysteria” created by the surge in prescription drug abuse and painkiller overdoses that began in the 1990s. Two epidemics, one in pain and the other in drug abuse, wound up being treated with the same solution: reduced access to pain medication.
“The problem of opioid overdose and diversion and abuse got so big, so fast that people felt compelled to act. And in some instances, in my view, they came up with simple solutions to complex problems,” says Passik.
One such solution was dose limits on opioid prescriptions, which have been implemented in states like Washington and Ohio. Patients who need higher doses must consult with an expert on pain medication.
“On the surface it looks like a very good thing. The doses that are being prescribed are lower, there have been fewer overdoses and it sounds like a win-win. But do we really know if people are getting their pain treated? Are doctors keeping their doses lower simply to avoid having to get expert consultations?” asks Passik.
“It makes you wonder. Are legitimate people who need pain medicine, sometimes in outlier doses, are they able to get them anymore?”
Getting pain medicine is often a struggle for C.C. Carr, a Florida resident and retired veteran, who wrote to National Pain Report last month about the problems he has getting prescriptions filled for fentanyl patches.
“I am stared at and certainly ridiculed over this but there is nothing I can do. People can go and get on welfare and spend it all on the illicit drugs of their choice at the taxpayers expense, but as I have never broken the rules, I am treated like a fiend and a drug addict looking for a fix,” says Carr, who has degenerative disc disease, fibromyalgia and has been in continuous pain for 10 years.
“I just wish doctors and pharmacists would learn that not all people on pain meds like having to use them, but have had to accept this fate. And are neither abusing them or selling them either. Some of us just want to be accepted and understood.”
It’s not just patients being viewed with suspicion. Kathleen Lundman wrote to tell us that a Walgreen’s pharmacist second-guessed her doctor about the prescriptions he gave her for two pain medications.
“The pharmacist said that he needed to talk to the doctor because of the high number of pills prescribed for me. He also said that he needed to find out the diagnosis for my condition!” said Lundman.
“I felt bad for my doctor having to convince this guy that I was on the same meds and dosage for years, and have been on time for doing everything else that was required by his office. He is a pain specialist and is well respected in the medical world. He’s also written three books on pain management. When did the pharmacist become the person to make decisions over the doctors?”
Steve Passik says he won’t criticize Walgreen’s or other pharmacies for taking steps to protect their business. But he says it’s one of many things that discourages doctors from taking on pain patients who are difficult to treat.
“At one point do you reach a conclusion that this is too much of a hassle and I’m not going to do it?” Passik says. “And what happens? You get a doctor not willing to write scrips for a particular patient.”
“The thing that bugs me about it the most is that pain patients don’t really have a voice. They have a voice in your publication, but they don’t go to hearings, they don’t get on airplanes to fly to Washington for some comment period. They are people feeling unbelievably stigmatized, unbelievably isolated, and they’re depressed already. I just think they don’t really have a voice in this.”