Lost in the battle to create fewer new patients addicted to opioids: Longtime pain patients

Krissy Houser is one of many chronic pain patients who are feeling besieged by new government and insurance company policies limiting prescription opioids.

The Bucks County woman was taking high doses of the highly addictive pain medications until her doctor got nervous in fall 2016.  Federal officials were looking at his prescribing records, he told her, and she'd need to come down to the much lower dose — about a seventh of what she was taking — that was newly recommended as the ceiling for new pain patients by the U.S. Centers for Disease Control and Prevention.

Houser cried.  She injured her back in a recreational vehicle accident in 2006, when she was in her late 20s. Two surgeries helped, but then she fell before the second surgery had healed. She had to leave her job at Merrill Lynch and go on disability. The opioids limited the pain enough for her to be able to help her mother, walk the dog, and see friends.

Since her doctor began slowly tapering her dose, she has suffered withdrawal symptoms and pain that is constant and intolerable, she said. Houser, who had weight-loss surgery before her accident, has gained 90 pounds since her pain treatment changed. She still has not quite met her doctor's dosing goal. "I've lost friends. I've lost everything. I'm a shut-in," she said.

Her mother now walks the dog. "That's the hardest part," she said. "She's now taking care of me again."

>> READ MORE: How doctors help chronic pain patients taper opioid doses

Houser sees herself as a collateral victim of the war on opioids. Experts say that most people with an opioid addiction today got started on prescription pain pills — either their own or someone else's.  New rules seek to contain the number of leftover pills available for diversion and reduce the number of pain patients who become dependent or suffer serious side effects. But longtime users with chronic pain contend that these rules are hurting law-abiding people.  They and some doctors worry that the opioids pendulum, which initially swung too far toward prescribing the pills, has now swung too far toward taking them away.

Situations like Houser's will likely become more common next January when Medicare starts enforcing its new rules on opioids, which will make it harder, though not impossible, for doctors to prescribe high doses.  Medicare, which often leads on insurance coverage policy, is coming later to this issue. But, with its 58.5 million senior and disabled beneficiaries — Houser included — it wields huge influence.

In addition to rules from many private insurers and state governments that make it more of a hassle to prescribe high doses of opioids, doctors are also feeling pressured by law enforcement agencies, which monitor prescribing patterns, patients and their advocates said. Pain specialists say they're seeing an influx of chronic pain patients who have been dumped by other doctors.

In part due to such restrictions, opioid prescribing has continued to decline from its peak in 2011. Yet U.S. doctors still prescribe more opioids per capita than doctors anywhere else in the world.

Overdose deaths continue to rise in much of the country, including Pennsylvania and New Jersey.

Some chronic pain patients and experts argue that those who are accustomed to high doses and are doing well on them should be treated differently. Cutting their doses could lead to greater disability, depression, suicide and illicit drug use. Besides, they note, patients often don't have access to pain specialists or the multimodal pain programs – employing not only medicine but also physical and emotional therapy — that research suggests is most effective.

Sharon Waldrop, vice president of the National Fibromyalgia and Chronic Pain Association, said most people on long-term, high-dose opioids failed every other option they tried first.  The drugs improve their quality of life.  "For a certain percentage of people," she said, "it's working."

Kristen Ogden, 65, lives in Virginia with her husband, Louis, 68, who has suffered terrible headaches and widespread pain since childhood. He is taking 28 times the opioids dose Medicare will soon use as a threshold for extra scrutiny.  His body does not absorb medications normally, Ogden said. The drugs, she said, make it possible for the two of them to have a social life, and they improve his thinking ability.  He says he never feels high. They were traveling to a pain doctor in California for treatment and paying $5,000 a month for the half of his dose that his insurer refused to cover. His doctor says he has faced pressure from the Drug Enforcement Administration, and is retiring.

Ogden worries that they will have "no quality of life" if Louis can't get high doses of opioids.  "I feel very frustrated because my husband has done very well," she said.

Stefan Kertesz, an addiction expert and physician at the University of Alabama at Birmingham and the Birmingham VA Medical Center, started a petition against Medicare's initial, and even stricter, opioids proposal. The adopted rules are less onerous, but still require a pharmacist to double-check with any doctor who prescribes more than 90 milligrams of morphine equivalent (MME) a day.  (That's the equivalent of 90 mg of hydrocodone, 60 mg of oxycodone or 20 mg of methadone. A calculator can be found here.)   Hospice and cancer patients were excluded from the limits, flagged in 2016 by the CDC as a point above which the risk of dangerous complications and death rose.

But that recommendation was not meant, Kertesz and others said, as a goal for people already taking higher doses.

>>READ MORE: Opioids mean relief – and humiliation – for these pain patients

Kertesz said doctors know very little about what will happen when patients are forced to taper their doses. Many will have prolonged withdrawal symptoms, including depression.  He worries they will turn to street drugs or even suicide. Many will need more mental-health support and monitoring.

"We are making large-scale, very aggressive policies in an arena where data is weak," he said. "I don't take it as a given that every person can be tapered."

Supporters of restrictions say that opioids are dangerous, addictive drugs that, at higher doses, raise the risk for serious side effects and death.  And, these experts say, there's little evidence that high-dose opioids are any better than alternatives for chronic pain.  The CDC found no studies of long-term use of opioids that compared them with other treatments.

Andrew Kolodny, a physician who is co-director of opioid policy research at Brandeis University, said that 90 MME is an "extremely high, dangerous dose."

Many doctors – including area geriatricians – say Medicare's actions will have more impact on its disabled patients than seniors, because older people usually are not on high doses of opioids, which are more dangerous for the elderly.  The drugs make them more vulnerable to constipation, falls and mental fogginess, doctors said.  At the same time, though, some older patients are also at risk from alternatives such as ibuprofen, which also can have significant side effects.

Kolodny suspects that fatal overdoses in seniors are underreported because their deaths are blamed on other medical conditions.

But he agrees with Kertesz that, during tapering, patients need extra care for both physical and emotional side effects.  The drugs can paradoxically make patients feel more pain, plus pain is worsened during withdrawal.  Anxiety and a sense of impending doom are also common during tapering.  "These patients," he said, "need a lot of support bringing their doses down."

Kolodny said opioids should almost never be used for chronic low-back pain, fibromyalgia or chronic headache, but often have been. "What we're really talking about are the victims of our era of aggressive prescribing," he said.

In a recent study, Erin Krebs, a researcher at the Minneapolis VA Health Care System, compared two groups of patients with serious, chronic back, hip and knee pain. The group not on opioids tried an average of four pain medications, requiring careful trial and error under close medical supervision.  Compared with the second group, who took opioids, those who had other therapies scored the same on measures of function, but reported less severe pain and many fewer side effects.

Krebs, though, signed Kertesz's petition.  "We need to make sure we're doing this right and not creating a whole lot of new, unintended problems for people," she said.

Lewis Nelson, a medical toxicologist who is chair of emergency medicine at Rutgers New Jersey Medical School, was on the panel that developed CDC guidelines. Chronic pain patients who have used opioids for years can overdose, he said, even when their dose stays steady.  It can happen when another medication is added that interacts with the opioids. Sleep apnea can also be a factor. Or a patient can get a virus that affects the lungs, leading to dangerously low oxygen levels overnight – and death.  "This is very, very common," he said.

Except for metastatic cancer patients and people who are near death, Nelson takes a hard line. He says even after surgery or a substantial injury, few people need more than five days on opioids.  "I don't think anybody should be on them for chronic pain."

Meanwhile, Houser is miserable with pain.  She wishes she could afford medical marijuana. She thinks about suicide, but says her Christian faith keeps her from doing it.  "There's only so much a human being can take," she said.

Locally, Independence Blue Cross now requires annual prior authorization for chronic pain patients on opioids, but doesn't set a dose threshold.

Aetna, the region's other dominant private insurer, requires prior authorization at 90 MME.  It has new programs for patients who take long-term opioids with sedatives, which increase the odds of overdose, as well as for those on high doses or with a history of overdoses.  It is urging subscribers to use alternative pain approaches, including acupuncture, physical therapy and chiropractic care.

From a numbers standpoint, the prescription restrictions seem to be working.  Opioid prescriptions peaked in 2011 and doses also dropped in 2017, according to a recent report from IQVIA's Institute for Human Data Science.  Doses for 90 MME and up fell by 16 percent last year.

Drug overdoses, fueled largely by illicit opioids, have continued to rise.