Jonathan Rodis takes his hydrocodone pills sparingly, only when the pain becomes unbearable. He doesn’t like the way the drug fogs his brain. And lately, he also needs to conserve — because new federal rules make it hard to get a refill.
Rodis has Marfan syndrome, a genetic condition that affects connective tissue and makes his whole body hurt. The pills dull the pain for a few hours. But now, instead of just calling his pharmacy when he needs a refill, he has to make the 30- to 45-minute trek from Winthrop into Boston to see his doctor, a major undertaking for a man who can barely leave the house on bad days.
“I feel so trapped when I look at my bottle and see six pills left,” said Rodis, who is 57.
This is the other side of America’s war on opioids.
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As federal and state regulators rush to curtail access to drugs that have claimed thousands of lives, the rules they’ve enacted fall hard on people who legitimately need relief from pain. In an atmosphere of heightened concern about opioids, patients in pain face reluctant doctors, wary pharmacists, and the frequent demand to prove that they are not addicts.
The Institute of Medicine estimated in 2011 that 100 million US adults suffer from pain that never ends, often the result of injury, disease, or dysfunction of the nervous system. Opioids are not their only option. Many get relief from other drugs, such as anticonvulsants and antidepressants; devices, such as spinal stimulators; and regimens, such as physical therapy and meditation. Rarely can they stop the pain, but instead patients assemble a mosaic of remedies to carry on with life. And for some, opioids are a critical piece.
Today in Massachusetts, many people are losing access to those crucial drugs, said Claire Sampson, cochairwoman of the Massachusetts Pain Initiative, an advocacy group.
Sampson, a nurse, sees the evidence at the Western Massachusetts pain clinic where she works, which she said is facing an influx of desperate pain patients.
“Providers are turning their backs on them,” Sampson said. “They’re afraid of consequences from the government. . . . They’re afraid of having their licenses pulled. They’re afraid of scrutiny.”
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In many cases, doctors are misinterpreting or overreacting to new federal and state guidelines intended to rein in opioid prescribing, Sampson said. One patient came to her with a note from her doctor saying that “due to state law” he had to reduce her dosage. State law contains no such requirement.
Some physicians consider the new rules reasonable and appropriate, in light of the crisis of opioid deaths. But critics say regulations often fail to account for individual differences.
“Opioids absolutely harm some patients. But they absolutely help some patients,” said Dr. Daniel P. Alford, a Boston University School of Medicine addiction specialist who directs the school’s Safe and Competent Opioid Prescribing Education program.
Alford decried what he called “opioid phobia” and “blanket regulatory changes that treat everybody the same.”
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Patients vary widely in their response to the drugs, and only about 1 in 10 is at risk of addiction, said Dr. Daniel B. Carr, a pain specialist at Tufts University School of Medicine who is president of the American Academy of Pain Medicine. Meanwhile, Carr said, global studies show that many more people suffer from chronic pain than from addiction.
Carr and Alford say that certain patients, who function well on a steady dose and comply with monitoring, can safely use opioids for years. But lately, many can no longer get the medication, or enough of it.
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Tanya Lussier of Lowell is staring down her last bottle of Percocet, cutting pills in half to make them last. Taking the Percocet, she said, was the only thing that enabled her to function and to sleep, as she copes with burning and throbbing in her arm from a spinal problem, and chronic shingles pain that stabs at her head.
Lussier, a 43-year-old mother of two who worked as a nurse before becoming disabled, said the pills don’t eliminate the pain, just lower its intensity for three to five hours.
But Lussier said her doctor was concerned that opioids would actually increase her sensitivity to pain, and informed her three months ago that she would get only three more monthly prescriptions for the drug. The doctor declined to be interviewed.
Lussier said she has tried everything else — procedures, injections, other medications — but none worked. “I’m running out of options,” she said.
An intriguing — although as-yet unpublished — research study documents the effects of limiting access to opioids. Angela Kilby, a PhD candidate at the Massachusetts Institute of Technology, analyzed a database of medical claims for 7 million individuals to find out what happens when opioid prescribing decreases. First, she found good news: Overdose deaths declined. But she also found downsides: People in chronic pain had higher medical costs and worked fewer days, suggesting a decline in health.
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Robert N. Jamison, chief psychologist at the Pain Management Center at Brigham and Women’s Hospital, said the fervor to cut back on opioids is sending new patients to his clinic. “We see people that have been on opioids for 25 years, and all of a sudden their providers don’t want to write any more,” he said.
Sometimes, patients come to Jamison’s clinic because they have heard the bad publicity about opioids and want to get off the drugs, he said. And sometimes this works out well. “There are some people that just slowly wean themselves off and discover their pain isn’t worse,” he said. “Some even feel better, because they don’t have the side effects. . . . There are others that are really struggling.”
Carol Stevenson got a letter from her doctor recently, saying he would abide by guidelines from the Centers for Disease Control and Prevention setting a recommended maximum dose for opioids. To treat intractable pain after multiple back surgeries, Stevenson, a 74-year-old Harwich resident, said she was taking 180 milligrams of oxycodone and 40 milligrams of Dilaudid each day, well above the recommended maximum. But she had stayed at that level for four or five years, and she said it worked for her.
Her doctor, who declined an interview request, tapered down her opioid dosage — triggering a hellish week of withdrawal — and prescribed various nonopioid medications, Stevenson said. But she said all the new drugs put her to sleep. She’s now back on oxycodone and Dilaudid, but at a dose so low, she said, “You might as well throw them out the window.”
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In pain around the clock, walking with a cane for the first time, Stevenson said, “I see myself heading to a wheelchair.”
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But some physicians doubt the value of long-term opioids, especially at higher amounts that raise the risk of overdose. “There really is no great evidence that chronic opioids for chronic pain are truly beneficial,” said Dr. Julia H. Lindenberg, a primary care doctor at Beth Israel Deaconess Medical Center in Boston.
Lindenberg called the CDC guidelines and other new regulations reasonable and necessary.
Some pain patients bristle at requirements to sign contracts, have their pills counted, and give urine samples — measures intended to make sure they’re taking their drugs as prescribed.
But when Lindenberg’s practice stepped up urine testing, the doctors found that a few longstanding patients, who had been considered at low risk for abuse, in fact were misusing drugs. Some had cocaine or other drugs in their urine, and some were not taking the prescribed opioids, suggesting they were selling the pills.
Even so, Lindenberg said, “There is a small subset of patients in my practice who are benefiting from a chronic, stable dose of opioids.” These patients aren’t showing “red flags” for abuse; they also try other treatments to manage their pain. Still, she periodically tries to taper down the dosage she prescribes.
“I don’t know that we totally understand exactly how to approach patients with chronic pain and what the right approach is,” Lindenberg acknowledged. “It differs for every patient.” And treatment decisions are complicated: Many patients suffer from both addiction and chronic pain; many also have depression and anxiety.
Lindenberg said doctors do feel under greater scrutiny over their prescribing, but added: “I think it’s appropriate.”
But Dr. Robert S. Baratz, a primary care doctor in Braintree, is galled by the new oversight.
“Most of us know what we’re doing most of the time,” he said. “But we’re treated as if we don’t by everybody.”
Baratz said he, like most other primary care doctors, has long experience managing patients who take opioids for chronic pain. These people, he said, have no part in the addiction crisis. He monitors them closely and stops prescribing at the first hint of abuse.
Jamison, the Brigham pain specialist, said he fears that some patients, suddenly unable to get drugs they have relied on, will turn to heroin or other street drugs to treat their pain.
And although no one could document it, nearly every pain patient interviewed predicted an even more dire consequence: an increase in suicides. “More people are going to die,” said Rodis, the man with Marfan syndrome, who works as an advocate for chronic pain sufferers. “It’s going to get worse.”
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Felice J. Freyer can be reached at felice.freyer@globe.com. Follow her on Twitter @felicejfreyer.