As the opioid epidemic has worsened across the country and legislators, public health officials and doctor's groups have responded by restricting access to opioid prescriptions, chronic pain patients say they've been abandoned by the healthcare system. In order to receive their medication, they say they're subjected to judgment and suspicion by their doctors, nurses and pharmacists, are forced to sign humiliating and coercive contracts, and submit to random drug testing. With little warning, some are being dumped by their doctors and left to withdraw from the dangerous drugs on their own. (Andrea Levy, The Plain Dealer)
CLEVELAND, Ohio-- For Jean Karchefsky, it happened on November 16, 2017.
The 63-year-old retired Mentor schools bus driver remembers the date because, she says, she was shell-shocked by what her doctor told her that day: she would no longer treat Karchefsky's chronic pain.
Karchefsky's Chardon-based primary care physician had been managing the Willoughby woman's well-documented and longstanding pain, resulting from disk and bone degeneration in her neck and spine, with opioid medications for 14 years. No more.
It was a day that Karchefsky, like millions of other people with chronic pain nationwide, had feared and dreaded. They have watched the opioid overdose epidemic grow, the waves of government crackdowns on doctors and prescribers, and the increasing restriction on access to opioid medications in state and federal chronic pain guidelines. And they've seen many doctors drop their chronic pain patients in response.
Off opioids, chronic pain sufferers find new ways to cope
Tired of the hassle of using opioids for pain amidst growing restrictions on prescribing, some patients with pain are trying alternatives.
While these patients acknowledge the seriousness of the overdose epidemic, they say their legal prescriptions, for legitimate disease, are not the source of the problem. It is a position supported by studies on what drugs people are using when they overdose, where people who misuse the medications obtain the drugs, and the risk of addiction and overdose among those with chronic pain.
For Karchefsky, who wasn't able to quickly find a new doctor to renew her prescription, November was only the beginning of an agonizing months-long ordeal that in the end left her to endure the "horrific" nausea, anxiety, insomnia and diarrhea of cold turkey opioid withdrawal alone at home.
She and other Northeast Ohio chronic pain patients say they've been abandoned by the entire healthcare system, from doctors to nurses to pharmacists. At doctor's offices and drug stores they are treated with suspicion; forced to sign what they describe as humiliating and coercive contracts to receive medication; accused of crimes; subjected to random drug testing; and, in some cases, left completely without help.
Most say they've been pressured to either drastically reduce their medication dosage or discontinue opioids completely, often with little notice and sometimes with no support.
Jean Karchefsky, 63, spends most mornings in her recliner until the pain in her back subsides enough for her to move around.
"They treat us like dirt... like a number and a drug addict," Karchefsky said. "I don't even want to go to a doctor anymore."
Caught in the middle
Karchefsky, like many other chronic pain patients who shared their stories with The Plain Dealer, started taking opioid medications more than 15 years ago. It was during a period when pharmaceutical companies were aggressively marketing the drugs for uses outside terminal cancer. Additionally, at that time, there was an increased screening of patients for pain, described as the "fifth vital sign," among physicians.
The result was a rapid increase in the number of prescriptions for opioids, which which include pain medications such as oxycodone (OxyContin), hydrocodone (Vicodin), codeine, morphine and others.
The number of prescriptions nationwide for opioids rose steadily throughout the 2000s. Dosages rose as well. Both began to fall after a peak in 2010 following two events: publication of two national chronic pain guidelines that established for the first time what qualified as a "high-dose" for prescribing, and, shortly after, studies that showed a correlation between escalating opioid doses and a progressively increasing risk of overdose.
In Ohio, guidelines released by the Governor's Cabinet Opiate Action Team (GCOAT) in 2013 advised doctors to "press pause" and re-evaluate when prescribing doses of opioids above a certain threshold for chronic pain patients. Ohio's threshold was set even lower than the "high dose" established by national guidelines. In 2016, the Centers for Disease Control and Prevention issued guidelines warning doctors to avoid prescribing high doses of opioids when possible.
Then in January of this year, U.S. Attorney General Jeff Sessions announced that a "surge" of Drug Enforcement Administration (DEA) agents and investigators would intensify their efforts to identify doctors and pharmacies who may be responsible for dispensing too much opioid medication.
Doctors received the message:
- Since peaking in 2010, prescriptions for higher-dose opioids dropped 41 percent over the next five years, according to a CDC analysis.
- In Ohio, the number of prescription painkillers dispensed has fallen by 28 percent over the past five years, according to the state Pharmacy Board.
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- Opioids dispensed to Ohio patients
- At some institutions the drop has been even more drastic. Opioid prescribing fell by as much as 66 percent at some VA medical centers from 2012 to 2016, and by 41 percent at the Cleveland VA Medical Center, according to the institution's Opioid Safety Initiative.
"The primary care docs have gotten cold feet recently because of the scrutiny that the prescribing of opiates has come under," said Dr. Ted Parran, an addiction specialist at St. Vincent Charity Medical Center. "So they've decided that they're not going to treat chronic pain with opiates anymore."
Prescription opioids wrong target, many say
While the current overdose crisis can be traced back to the wave of liberal prescribing that began with the introduction of Oxycontin in the mid 1990's, today most overdose deaths involve the use of an illegally-obtained street drug, such as heroin or fentanyl.
In 2016, almost 60 percent of unintentional overdose deaths in Ohio, about 2,300 deaths, were due to fentanyl and its potent relatives. About 14 percent, or about 500 unintentional overdose deaths, were due to prescription opioids, the lowest proportion since 2009.
Yet opioid overdose deaths in the state, which has one of the most aggressive prescription monitoring programs in the country, continue to climb: up 32 percent to 4,050 deaths from 2015.
There are good reasons to avoid prescribing opioid medications as a first-line treatment for chronic pain, as research has shown that for some common conditions other less potent alternatives are as effective and have fewer side effects. And although there is no consensus, estimates of addiction rates among those who take opioids for chronic pain range from as low as one percent to as high as 40 percent.
But while some people do become addicted during pain treatment, research on patients seeking help for misuse of painkillers shows that the vast majority were using medications that were not prescribed to them. Only about 7 percent to 10 percent of opioid diversion occurs when patients deliberately attempt to dupe a doctor for a prescription by feigning an illness.
Many patients currently being dropped by their doctors have been on the medications for years, or even decades. Even if other treatments are safer and equally effective, these patients can't simply stop taking opioids without facing a host of withdrawal symptoms due to a physical dependence on the medications.
Physical dependence, which is not the same as addiction, can happen with many substances, including caffeine, nicotine or sugar, and means that the body has adapted to the use of the drug and often needs more of it (called tolerance) to achieve the desired effect.
Primary care doctors have been challenged by the need to wean physically dependent patients off opioids, said Dr. Xavier Jimenez, a psychiatrist and pain specialist who is the medical director of the Cleveland Clinic's interdisciplinary chronic pain rehabilitation program.
Weaning from opioid use, while not generally life-threatening, can be highly unpleasant. Symptoms include increased pain, anxiety, nausea, vomiting, diarrhea and insomnia.
"To 'deal with' all the ramifications of weaning someone off opioids, and all these symptoms, I hate to say it but they're not terribly convenient for the practicing physician who wants to see clean-cut cases on a daily basis," Jimenez said.
The easier choice is to refer a patient to a pain management doctor, he said.
"The difficulty with that is that first, there's not enough [specialists] to meet the demand but second, the patients feel like they're being dumped onto someone else when things get inconvenient," he said. "That's been something I've been feeling quite a lot from patients," referred from primary care practices.
The pain of pain management
That's what happened to 64-year-old Richard Barron in the spring of 2017, after more than two decades of care for chronic pain that started after part of his spine was crushed in a 20-foot fall into a utility vault.
"People like us, they've left us stuck," said Barron. "For years, to take care of these injuries they had just issued us these medications. None of us were addicts. We're older men and women. I'm in my 60's, with a lot of injuries that all show up on X-rays and MRIs."
Barron had parts of his injured discs and spine removed in surgeries in the 1990s and arthritis has since attacked the bone, causing constant pain in his back. He was able to manage for years with a combination of two opioid medications, hydrocodone and tramadol. In the spring of 2017, Barron moved back to Ohio after living in Colorado for four years. Here, his doctor told him he could no longer treat his pain and referred him to a pain management specialist.
There are about 25,000 chronic pain patients for every active pain specialist doctor in the country. Even in Northeast Ohio, which is relatively saturated with medical care facilities, it can be difficult to find a doctor taking on new patients, particularly close by.
Once in pain management, Barron, Karchefsky and about a dozen other chronic pain patients who spoke with The Plain Dealer described similar experiences of poor care. Their complaints included long waits in crowded waiting rooms, little time with their physicians, feeling pushed to receive expensive and invasive steroid and anti-inflammatory injections, and either an unwillingness to discuss continued opioid medication or strong pressure to discontinue the prescriptions altogether.
Stephen Newman, 32, has found other, natural ways to find relief from his chronic pain, he says. He would never go back to a pain management clinic after his treatment there.
Stephen Newman, a 32-year-old computer software security specialist who has two rare, painful conditions, ankylosing spondylitis and common variable immunodeficiency, said he felt humiliated by the requirements pain management doctors put in place for patients seeking opioid medications.
He visited several doctors over a 10-year period. He was asked to submit to a background check at one practice. Every practice required him to sign a treatment agreement, often referred to as a "pain contract" which he and many other patients reported were full of coercive, threatening, and stigmatizing language.
These contracts, now used almost universally for patients receiving opioid medication, usually require a patient to agree to receive medication from only one doctor, submit to random urine drug testing, pill counts, and sign statements agreeing not to commit crimes, such as using heroin or selling prescription medication. There's little solid evidence they work to deter prescription drug diversion or overdose.
"They can call you in whenever they want you to pee in a cup or to count your pills," Newman said. "Why? I didn't commit a crime. They have medical evidence that I have a real disease. I can't tell you how humiliating and degrading that was."
Sandy Morris has suffered the pain of osteoarthritis for years. The 76 year-old Painesville woman has severe arthritis in her hands and feet. She and her husband found little help from pain management doctors when their primary care doctor left the state to retire several years ago.
Sandy Morris, 76, of Painesville Township, said a Mentor pain management doctor accused her 72-year-old husband, who has dementia, of selling his pain pills when a urine drug screen taken at his first visit came back negative for opioids. Morris said her husband's drug test was negative because they'd run out of the medication after their primary care doctor left the state and he therefore wasn't taking any opioids at the time. Morris's husband, Richard, is now in a nursing home.
Other pain patients said they had little or no say in their care. Almost all said the option of opioid medication was off the table from the start, regardless of their condition or medical history.
A 39-year-old Northeast Ohio woman who asked not to be identified said she tried to kill herself because the pain was so unbearable when she attempted to wean herself off of opioid medications after 20 years of use for degenerative disk disease. Every pain management doctor she saw told her that they would not offer opioid medication. One clinic assistant told her over the phone, before she'd had her first appointment, that she could only receive nerve blocks at the practice.
Interventions such as injections and nerve blocks are popular among pain management clinics because they are reimbursed at a higher rate than patient counseling, medication management or straight office visits, said Parran and Jimenez. Injections can also be administered quickly, in many cases.
"Honestly, it's what keeps the enterprise going from an income standpoint," said addiction medicine specialist Parran.
"Pain management has become a racket with these injections," said Barron, who at one point was offered steroid shots in his back once a week, a procedure that costs about $4,000 a month without insurance.
From 2000 to 2014, use of these epidural spinal injections, which involve injecting medication (sometimes with X-ray guidance) into the space directly around the fibrous layer that surrounds the spinal cord, climbed 165 percent among Medicare recipients. They're the most commonly used intervention for back pain, despite conflicting opinions of their effectiveness.
Searching for a balance
Dr. Daniel Tobin, an internal medicine doctor who runs Yale University's primary care residency program and travels around the country teaching doctors about opioid safety, said while many primary care doctors would prefer to stay away from prescribing opioids now, they're actually the best doctors to manage patients with chronic pain.
"They know their patients really well," and often have more time to spend with them, he said. Tobin teaches what he calls "rational prescribing" in his courses, which emphasize that opioids are only one tool to be used against chronic pain.
"When they're used, and there's a time for them, they need to be used safely," he said.
The last thing doctors should be doing in the midst of an overdose epidemic is abandoning their patients, he said.
"It's really, really unfortunate and an example of the pendulum swinging too far in the other direction" toward under-treatment of pain, he said.
Patients like Barron, Karchefsky and Newman say they'll never go back to a pain management clinic after the way they were treated. They and others who spoke to The Plain Dealer are angry, frustrated and suspicious of the medical profession, and the legislators they see advocating for restricted access to the pain medications they say have successfully treated their pain.
Karchefsky had to go to the emergency department when her pain management doctor refused to help her wean off the opioid medication. She is still experiencing mild symptoms of withdrawal but has a different doctor, who is not a pain specialist, who is helping her manage with both counseling and medication
Barron, who weaned himself off of tramadol, is now taking large doses of anti-inflammatories to control his pain, and is concerned about how his liver will hold up over time.
Newman, who is off opioid medication and feeling far better after starting acupuncture, hopes that sometime soon doctors and policy makers will recognize that the measures they've put in place that reduce the availability of prescription opioids have unintended consequences, and may not be achieving the goals they'd hoped.
"We need a balance, and this is an extreme measure that's being taken that's not really solving the problems. Because if they were, people still wouldn't be dying every day," he said.
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