IN THE NEWS: U.S. Pain’s Emily Lemiska sheds light on patient rights.

This article was posted today (September 14, 2016 at 8:51 am.)

Side effect of drug fight means some are left to suffer.

Emily Lemiska was in trouble.

She was out of medication and she was out of state.

  “Emily Lemiska is a Hartford resident who lives with chronic pain and manages it with a drug called Tramadol. She’s worried restrictions on opiod prescriptions will hinder her treatment. (Erin Covey / Republican-American)”

She was also in chronic pain, caused by a rare spine disorder, Klippel-Feil, in which two or more bones of the spinal column fuse together. In Lemiska’s case, it was eight.

To treat the searing pain caused by that disorder, the former runner and fitness enthusiast relied on Tramadol, a synthetic opioid.

In 2014, while visiting her husband outside Boston where he was in a legal internship, the then-Berlin resident ran out of medication and called her doctor’s office for a refill.

But the pain doctor treating her would not refill her prescription. To obtain a refill for such an opioid, patients must visit the doctor personally. “I can’t drive,” said Lemiska, now 30. “I would have to get my mother or my husband to drive me. So I asked them, ‘Can I come in next week and get a temporary prescription to hold me over?’”

No, she could not. And when Lemiska’s pain increased, she began to cry. And to panic. And to call any medical personnel she could find who would prescribe enough Tramadol to keep her pain at bay for a few days until she returned to Connecticut to see her doctor. She realized what she must sound like to anyone on the other end of the phone: an addict, desperate for her next fix. “I was hysterical,” said Lemiska, now of Hartford. “I honestly have never felt so traumatized and humiliated in my life and I’d done nothing wrong.”

The bind that Lemiska found herself in is one with which many chronic pain patients are familiar – and others fear. To stem the growing opioid epidemic, federal authorities suggested that doctors reign in their prescription of opioids for chronic pain, a condition estimated to affect 100 million Americans. In July, a survey for the Boston Globe and Inspire found that nearly two-thirds of respondents said getting prescription opioids had become harder in the past year.

“In the past four months, I’ve gotten 24 emails from people who have either had their medications tapered, or switched or reduced or been told they have to get off their medications,” said Cindy Steinberg, national director of Policy & Advocacy for the U.S. Pain Foundation. “There has been such a pull back that very few people can get their medications,” she said. “Right now, the pendulum has swung so severely in the direction of not prescribing that people who need them are not able to get them. My experience leading my pain group bears this out. There are so many people living with pain who can’t get the help they need, including non-pharmacological treatments as well.”

The opioid epidemic, which now claims 28,000 lives annually, has focused attention on what many say is the over-prescription of opioids – painkillers that include Vicodin, OxyContin, Percocet and morphine. Sales of opioids have quadrupled since 1999, in part because of a change in the way doctors approach pain and, critics allege, aggressive marketing by pharmaceutical companies. The soaring death rate and media attention has made many doctors reluctant to prescribe the drugs.

But that wariness has left some patients with chronic pain feeling left out.

“It’s more than a fear,” said Dr. David Carr, president of the American Academy of Pain Medicine. “It’s an actuality. The sudden swing of the pendulum has been catastrophic for many people who have been completely legitimate and compliant with medical treatment.”

In March, the Centers for Disease Control released the first national standards for prescription pain killers. The new guidelines recommend that doctors try pain relievers like ibuprofen before prescribing opioids and give patients only a few days supply. The recommendations are an attempt to confront the widening epidemic. The National Institute on Drug Abuse estimates that 2.1 million Americans are suffering from substance abuse related to prescription opioids. Balancing the needs of chronic patients against the opioid epidemic is dicey, particularly given the soaring number of opioids used largely in the U.S. While Americans constitute 5 percent of the world’s population, said Dr. Marc L. Kraus, a Waterbury internist, they consume 80 percent of all prescription pain medication – and nearly 100 percent of Vicodin alone.

“That’s out of control,” said Kraus, an addiction specialist. “Seventy-eight kids and adults are dying each day from this. This is a staggering problem that is requiring things to help get control. … We all have to take a breath and stop and think about what we are doing in medicine.”

Kraus, who is a fellow of the American Society of Addiction Medicine and a Diplomat of the American Board of Addiction Medicine, says the CDC guidelines issued in March are “not dogma.” He said the guidelines discourage doctors from beginning treatment with morphine and, instead, to start with “ice packs and heat and acupuncture and non-steroidal anti-inflammatory medication, and going up the ladder not going to the very top.”

But many patients, like Lemiska, who quit her job at Mass General Hospital because even the bus ride there would send shooting pain through her shoulders and back, say they tried and continue to use all of those methods – to no avail. “I take NSAI (non-steroidal anti-inflamatories), I do physical therapy, I use topic creams, ice packs, heating pads, massage, accupuncture, I get steroid trigger point injections. None of those things alone manage my pain.

“When I try to look back at how I functioned, it’s like a black hole,” she said. “I was very reluctant to take medication. I was terrified of becoming dependent and afraid of the side effects. I felt like taking medication was an acknowledgement that they couldn’t fix me.” Ultimately, she agreed try Tramadol. “It was the first time I felt like myself,” she said.

Dr. Steven Schneider, chief medical officer at Saint Mary’s Hospital in Waterbury, said he worries that patients like this might suffer while the health care industry and government struggle to tame the epidemic.

“There has been so much concern about addiction that the doctors are always worried that if I give too much narcotic, will my patient get addicted?,” he said. “There is a lot of concern on the health care giver side that there are people in disabling pain who are able to live their lives because of those pain medications. We are trying to find the right balance between undertreating and overtreating. … There is a group of patients who are in a lot of pain. We want to do the right thing as health care providers, but it’s not always clear what the right thing is.”

Kraus traces the opioid epidemic to a 2001 decision by the Joint Commission that accredits more than 90 percent of the hospitals in the U.S. – including all in Connecticut – to add “pain” as the “fifth vital sign” (the others are pulse, temperature, blood pressure, respiration) to what hospitals should check for in patients. Schneider explains that the commission wants to know “Did you ask your patient the level of pain on a scale of 1 to 10? If you didn’t do that, that’s considered not good.”

This attention to a patient’s pain was new, he said. ‘I do think hospitals under-appreciated patient’s pain. It took a long time for us to wake up and realize that the more pain you have, the longer your recovery and the higher the risk of complications.”

“All of a sudden hospitals were saying, ‘We’ve got to step it up to treat patients’ pain,’” Kraus said. “They weren’t trained so they defaulted to the doctors who were prescribing opiates, and people were getting into trouble. The frequency was more than you needed and the dosaging was too high.”

Moreover, said Dr. William C. Becker, an assistant professor at the Yale University School of Medicine, medical reimbursements play a part. “It’s easier to write the prescription,” he said. “Patients usually respond at least in the first week or so. And then it becomes the dominant treatment reality.” Meanwhile, he said, treatments with long-term benefits – physical therapy, cognitive behavioral therapy, yoga, aquatherapy and some of the medications – are reimbursed at a lower rate or not at all.

“Unfortunately, it comes down to reimbursement,” he said. “The opioids are covered. It was a perfect storm.”

Chronic pain patients, many of whom have tried other interventions before narcotics, insist they need these medications to manage what, for some, is intractable, persistent pain.

Lemiska fears that many patients like her will be denied medications and will not be physically able to advocate for themselves.

“The people who require these medications, who are in the most pain, are the people who are least likely to jump through these fiery hoops,” Lemiska said. “You can’t help one side (of the epidemic) to hurt the other. You are decreasing the suffering of addicts at the expense of chronic pain patients.”

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