Before Cynthia Bly used up the last of her prescription of pain pills in January, she was able to do the dishes, cook meals and take short walks with her husband outside their rural Springfield home.
Now that the 64-year-old former office worker no longer has access to hydrocodone, an opioid pain reliever, the pain from her chronic back problems and other medical conditions is too overwhelming for her to enjoy those simple activities. She spends most of her days in a recliner or wheelchair and uses a portable commode to avoid the pain and risk of falling on the way to the bathroom.
“It’s been terrible for me because they took away everything that helped me walk,” she said. “My God, I can’t do anything anymore.”
Bly, who lost access to prescription painkillers late last year when her longtime doctor stopped practicing full time, is one of perhaps millions of chronic-pain patients nationwide who have been affected by a nationwide opioid epidemic fueled in part by overprescribing, but largely driven by abuse of heroin and fentanyl.
Patients who aren’t abusing opioids are the “silent majority,” said Dr. Andrew Bland, president of the Sangamon County Medical Society.
The actions, according to critics of the trend, have taken place because of government recommendations in 2016 to encourage more conservative prescribing of narcotic pain relievers, along with ongoing concern stemming from the punishment of alleged opioid over-prescribers by state regulators and the U.S. Drug Enforcement Administration.
“These cases are a reality,” said Dr. Nestor Ramirez, a Champaign physician who is president of the Illinois State Medical Society.
Advocates for patients and health-care providers say patients are being treated like heroin addicts and suffering needlessly without being offered effective alternatives.
The patients tend not to complain because they are too sick or too scared of being abandoned by their doctors, according to those advocates, some of whom have been accused of being in league with pharmaceutical manufacturers for accepting contributions from them.
In extreme cases, patients are becoming even more debilitated, buying prescription opioids and illegal opioids such as heroin and fentanyl on the street, sometimes overdosing on those drugs, critics of the crackdown charge. Critics say some pain patients are dying by suicide, though such deaths are rare.
The use of opioid painkillers has dropped in recent years, and that trend needs to continue, Ramirez said. But he said he believes there has been “misinformation and misinterpretation” of the U.S. Centers for Disease Control and Prevention’s 2016 guidelines on opioid prescribing.
Those guidelines discourage opioids as routine therapy for pain lasting longer than three months except for cancer patients, palliative care and end-of-life care.
Bland said he is working with others in Sangamon County’s medical community on a “rational approach” to prevent patients from becoming dependent on opioids in the future and to prevent overprescribing so fewer unused pills are stolen or otherwise “diverted” for street sales.
That approach, he said, can reduce local doctors’ fears of punishment and give them more confidence and knowledge to help patients dependent on opioids reduce use of the drugs and decide who can safely continue on long-term opioids.
But until there’s a more nuanced understanding of how patients can be best served, pressure being put on doctors across the country by their peers, professional organizations and the government means “the people in pain are forgotten,” according to Dr. Lynn Webster, a pain researcher in Salt Lake City and former president of the American Academy of Pain Medicine.
“What we’ve done is say, ‘Opioids are bad and everybody who’s on opioids long term is at risk of overdosing,’ and that’s wrong,” Webster said. “The legitimate pain patient is paying the price.”
A more cautious prescribing approach
It’s undisputed that the use of prescription painkillers for legitimate medical problems can lead to addiction and overdoses, but such a path is uncommon in the general population of patients.
Research suggests that two-thirds of overdoses related to prescription drugs involve drugs that have been diverted, meaning they have been stolen or sold and not used by the patient for whom they were prescribed, Webster said.
That’s a big reason experts say it’s important for doctors not to overprescribe.
Illinois’ Prescription Drug Monitoring Program, which provides a database of patients that doctors can check before issuing opioid prescriptions, helps reduce “doctor shopping” among patients and overprescribing by health professionals, according to Maria Bruni, acting director of the state’s Division of Alcoholism and Substance Abuse.
The program has seen use of the database skyrocket since the enactment of a state law in January requiring prescribers to register in the program and document certain new opioid prescriptions, Bruni said.
The program, she said, “is meant to change that interaction between the prescriber and their patients” without denying needed medicine for chronic-pain patients.
Eventual heroin use is rare among legitimate prescription drug users, according to the National Institute on Drug Abuse. The institute says an estimated 4 percent of people who abuse prescription opioids, after obtaining them for medical or nonmedical purposes, become heroin users.
Prescription opioid users do face higher risks, though.
A study indicated that frequent prescription opioid users and those diagnosed with dependence or abuse of prescription painkillers are 40 times more likely to end up using heroin. And almost 80 percent of heroin users report using prescription opioids, for either medical or nonmedical purposes, before turning to heroin, the institute said.
Institute officials said the use of multiple mind-altering drugs, not just prescription opioids, during a person’s life can be the most common path to heroin.
“It’s about the progression of a disease,” Webster said. Prescription opioids, he said, are not “gateway” drugs.
Austin Wells, 31, a recovering heroin addict living in Springfield who has been clean about nine months, said he previously used cocaine, marijuana, alcohol and LSD before he became addicted to opioids, and eventually heroin, after he was prescribed opioid painkillers for a back injury in his early 20s.
He agrees with experts who say doctors considering prescribing opioids should first determine a patient’s substance-abuse history to gauge long-term risk of abuse.
“My mind acts differently than most people,” Wells said. He was never dependent on the other drugs, but once he began using opioids, he said, “I was hooked.”
But many doctors are refusing to treat pain patients or weaning their existing patients off opioids against their will rather than considering non-opioid alternatives or weighing appropriate opioid doses, said Bob Twillman, executive director of the Academy of Integrative Pain Management in Lenexa, Kansas.
Doctors often don’t want to deal with patients’ mental-health issues, or battle with insurance companies that often refuse payment for alternative treatments, he said.
Dr. Andrew Kolodny, an opioid researcher at Brandeis University in Massachusetts and director of Physicians for Responsible Opioid Prescribing, advocates for more-cautious prescribing of opioid pain medicine. He said he has criticized pain industry-funded professional organizations that “promote aggressive use of long-term opioids.”
“The evidence suggests that for the vast majority of people with chronic pain, the risks of taking opioids around the clock, for weeks and years, outweigh the benefits,” Kolodny said.
However, he added that many doctors don’t under understand how hard it is for patients to be weaned off of opioids, and some patients need treatment for addiction rather than scorn.
Some chronic-pain patients think they’re being treated like addicts, but “nobody is calling them addicts,” Kolodny said.
Kroenke said he isn’t an advocate of opioids and opposes high doses for patients in most cases, but “it doesn’t make sense to take them off if it’s working for them.”
The national push to “get everybody off” opiates has created a stigma for patients and doctors alike, resulting in chronic-pain patients being classified as “drug seekers,” he said.
“This is somewhat of a polarizing issue right now,” Kroenke said.
In fact, Kroenke discourages excessive use of the term “opioid epidemic” because it increases stigma.
“An epidemic generally suggests a disease that is widespread and usually highly contagious rather than limited to a minority of those exposed,” he wrote in 2017 in the Journal of the American Medical Association. “An unintended consequence of excessive concerns raised about opioids could be an increasing reluctance among clinicians to prescribe even small amounts of opioids for a limited time for acute pain, including for patients discharged from the emergency department.”
Kroenke told The State Journal-Register that the CDC guidelines are “not unreasonable” but “they’re being over-interpreted.”
Doctors see need for chronic pain programs
Dr. Loren Hughes, president of Springfield-based HSHS Medical Group, said doctors are using the guidelines appropriately. But he said chronic-pain patients are a lot of work for doctors who have limited time for visits and face stagnant or declining reimbursements from Medicaid, Medicare and private insurers.
There aren’t enough multi-disciplinary programs locally or nationwide to treat chronic-pain patients, including those well-served with long-term opioid medicine, and take the burden off primary care doctors, Hughes said.
Chronic-pain patients whose needs require that attention are among the opioid epidemic’s collateral damage, he said.
It can be especially difficult for patients when their longtime doctors retire, he said. These patients may find it difficult or impossible to find another doctor willing to manage their care and potentially face scrutiny for long-term opioid prescriptions, he said.
Bly, the Springfield pain patient, said she was functioning adequately with the help of hydrocodone for more than a decade before she said she was told by a nurse that her doctor, Memorial Physician Services internist Mary Saunders, would be retiring in December.
Bly said she was told by Saunders’ nurse that she needed to find a new doctor. So Bly made an appointment with another MPS doctor, Avinash Viswanathan, whom she said subsequently told her that he couldn’t take on her care because he wasn’t prescribing opioids for new patients. He told her that he would inform Saunders they had spoken, Bly said.
Even before Bly left Saunders’ care, Saunders earlier in 2017 reduced the number of hydrocodone pills that she was willing to prescribe.
Saunders said she was “afraid of getting in trouble with the DEA and the CDC,” according to Bly.
After meeting with Viswanathan, Bly said she received a puzzling letter from Saunders mentioning that Bly had visited another doctor and dismissing Bly as a patient.
“She made it sound like I was doctor-shopping to get more opioids,” Bly said. “We got along really well. I don’t know what happened.”
Bly eventually learned that Saunders continued to practice on a limited basis instead of retiring. But Bly said she didn’t want to ask whether she could resume care from Saunders after the apparent insult.
Bly hasn’t been able to find another doctor willing to continue her hydrocodone prescription. Her current doctor, from HSHS Medical Group, has agreed to care for her but isn’t treating chronic pain with opioids, Bly said.
“Now I’m in a wheelchair instead of walking,” she said.
Bly even tried illegal marijuana because she heard it might ease her pain, but it didn’t work for her.
“All it does is make me want to eat and sleep,” she said.
Memorial Physician Services officials wouldn’t comment on Bly’s interactions with Saunders and Saunders’ office. Officials also wouldn’t say whether MPS doctors have been involuntarily weaning patients off of opioids or deciding to no longer prescribe opioids.
The medical group “does not mandate care plans for how physicians treat individual patients, including the management of opioid medications,” said Michael Leathers, spokesman for Memorial Health System. The system operates the medical group.
“Each physician partners with their patients to make the most medically appropriate decisions for their care and well-being, including changing medications that are not effective or where the risks outweigh the benefits of use,” Leathers said.
Dr. Virginia Dolan, medical director of population health for Memorial Health System, said the medical group convened an internal task force last year to produce a chart with non-binding recommendations to give its doctors, nurse practitioners and physician assistants more comfort when prescribing opioids.
The chart, expected to be in use by April, is designed to ensure that prescribing habits are “conservative,” in line with “best practices” and give patients “the least amount of medicine to get the job done,” she said.
Dolan said the chart also could help to avoid situations in which patients may be cut off or weaned off of opioids unnecessarily.
Hughes said the HSHS medical group doesn’t have any overall policy requiring doctors not to accept new pain patients. He said he doesn’t know whether any HSHS doctors may have altered their practices in this way or decided as new members of the group not to treat pain patients.
Officials from Springfield Clinic and SIU Medicine — the physician group associated with Southern Illinois University School of Medicine — either didn’t respond to requests for comment for this story or declined comment.
‘I wonder how I survived’
Earl Hill, 46, of Springfield said he didn’t dispute his doctor’s decision nine months ago to reduce the prescriptions for hydrocodone and methadone the former construction and convenience store worker used for more than 10 years to deal with a variety of back and nerve problems that eventually disabled him.
Hill said he didn’t want to upset his doctor for fear the doctor would drop him as a patient.
“I didn’t say anything to him because doctors do what they pretty much want to do,” Hill said. “They have control over you.”
Hill’s life took even more of a turn for the worse about six weeks ago, when the doctor’s office told him the Medicaid program wasn’t approving any more payment for his hydrocodone. Hill went through withdrawal from the drug on his own and said the pain made his arms shake so badly that he slipped and broke his left hand about a month ago when he tried to get out of the bathtub.
Now Hill, who is single, said he no longer is able to endure the pain of pushing his wheelchair outside to his porch to watch people walk by. He worries that his doctor eventually will cut him off from all methadone pills.
“It’s making my depression worse because I can do less than before,” he said. “I don’t want to live all crippled. It’s like life isn’t worth living anymore.”
Hill gave permission for a reporter to get information from the state about his case, and a spokesman for the Illinois Department of Healthcare and Family Services, the agency in charge of Medicaid, said payment for the hydrocodone prescription renewal wasn’t approved because the doctor didn’t submit the required additional documentation.
“HFS staff has also been working closely with the doctor to find a tapering plan that would best suit the patient, including non-narcotic alternatives,” HFS spokesman John Hoffman said.
Jennifer Bertoni of Rochester said it’s unfair how pain patients are being affected, but she said she benefited from doctors eventually turning her down for prescription opioids.
Nerve damage and other medical problems caused by an indirect lightning strike in 1992 eventually led to Bertoni, 45, becoming addicted to hydrocodone, she said.
“It made me feel like I had no worries about anything,” said Bertoni, a paramedical examiner and former emergency medical technician and phlebotomist who didn’t use other drugs recreationally and never was tempted to use heroin.
When one doctor dropped her, she went to another, then another, she said. She said she was hospitalized a few times for overdoses.
Bertoni, a divorced mother of three, said she eventually resorted to buying hydrocodone through social connections, spending $6 to $8 per pill, or $300 to $400 for 60 to 80 pills that would last her a few days.
She said she continued to work, sometimes alongside health professionals who also were abusing opioids after starting on the drugs to deal with pain.
When her parents stopped helping her pay her bills and stopped talking with her, she went through treatment at Gateway Foundation and has been clean 10 months.
Her chronic pain remains, she said, but it’s being relieved somewhat by the drug Suboxone, which helps reduce opioid cravings.
Bertoni said she realized that she never needed as much pain medicine as she was taking in the past. Dependency to the medicine, she said, led to pain associated with withdrawal.
“People who are in addiction isolate themselves,” she said. “I wonder how I survived.”
Contact Dean Olsen: dean.olsen@sj-r.com, 788-1543, twitter.com/DeanOlsenSJR.
*****
Chronic pain, opioids and overdoses
* One-third of Americans have chronic pain, and 3 percent to 4 percent of the total U.S. adult population receives prescription opioid painkillers for longer than three weeks, according to medical studies.
* Almost two-thirds of the 63,600 drug-overdose deaths in the United States in 2016 were caused by opioids ranging from heroin to prescription opioids such as methadone and oxycodone or fentanyl, according to the U.S. Centers for Disease Control and Prevention.
* Commonly prescribed opioids such as hydrocodone, oxycodone and morphine are associated with a significant number of fatal opioid overdoses — 40 percent — according to federal statistics that indicate more than 200,000 Americans died from 1999 to 2016 from overdoses of such prescription drugs. But federal officials say heroin and fentanyl are driving the increases in opioid-related death. Deaths related to fentanyl, a drug 30 to 50 times more powerful than heroin and which can be obtained through prescriptions or made illegally, are rising at some of the highest rates. Fentanyl often is mixed with heroin by dealers and users to produce a more intense “high.”
* More than 60 percent of people who died from an opioid overdose had been diagnosed with a chronic-pain condition, and many had been diagnosed with a psychiatric disorder, a study of more than 13,000 overdose deaths found.
* There were more than 30 nonfatal overdoses for every opioid-related overdose death in 2016.
* Of Sangamon County’s 42 opioid-related deaths in 2017 — the highest number of such deaths since detailed statistics began being collected locally — all but nine primarily involved heroin or fentanyl, according to the county coroner’s office. And fentanyl was the primary component in 20 of the deaths.
* Statewide, 1,502 of the 2,022 opioid-related deaths in 2017, or about three-quarters, involved opioids classified as prescription drugs. But according to the most recent statistics, fentanyl-related drugs played a role in more than 70 percent of those deaths.
Filed under: General Problems
I almost could not get through all the malarkey in this article.
I would love a face to face w/this Bartoni,,I guess since she likes the color of black,,,we are all suppose to like the color black??wth???Kolodyn has stock in suboxone along w/daddy,,,As a matter of fact/truth anything this klan speaks of concerning Cpp and data on opiates is a corrupted lie,,They,,Andrew KKolodyn has been proven a liar soo much,and any article data published out of the cdc under his regime has proven a lie,,soo it would be reasonable to conclude this whole addiction crap,,,it exactly that,,,crap,,a lie,,,set up by ,”things,” who think they had the right to force physical pain onto the medically ill,,,I call them Hitlers side kicks,,jmo,,maryw
Mary, I find it completely arrogant that she can say that she doesn’t need strong pain medication for her chronic pain NOW that she’s taking Suboxone, which contains an opioid – buprenorphine – that is 40 times stronger than the medication (hydrocodone) she had a history of abusing. While I have no issues with MAT or the medications used for MAT, I find it despicable that a recovering addict can access strong opioid-based medication (a class that possesses strong pain-relieving properties) while a chronic pain patient is denied this class of medication and forced to suffer.
I would love for Andrew Kolodyn to actually state ,”what,” side effects he is talking about??Thee ONLY SIDE EFFECT FROM OPIATES IS POSSIBLE CONSTIPATION,,WHICH CAN EASLY BE TAKEN CARE BY A OTC,,, Again,,hes a liar,,,in it solely for the monies,,from his ,”addiction warehouses,”,,The truth is,,he has tortured and killed more CPPs then anyone in the 21st century,maryw
When I read about a,person losing their opiates due to their doctor retiring, no longer prescribing opiates, ect. I wonder how many other doctors have they seen. Did they just call and ask if a doctor prescribed a,particular opiate ? Did they see a new doctor ? Did they give the doctor time to get to know them ? Did they decide the doctor would not prescribe what they wanted after the first or second visit ?
Do you think you could rephrase what it is you are saying because you seem to be trying to make a point…I usually don’t reply to anyone but inquiring minds would like to know.
Dr boris, who are you replying to ?
Well many times patients do get notice about when there doctor will retire until a few months before, if that. Most pain management clinic will not take over your care without doing more shots even though you have done very well on what your past doctor did before. Now if you go to pain management the first thing they want to do is just stop the opiates or decrease them by a lot and then set you up for painful, dangerous epidurals that are not FDA approved, have less then 50% chance of working and less then 25% if you had them before and they did not work before. Yet that is the first thing these doctors do. Another is to require expensive drug test to be done every month instead of 2 to 4 times a year at random. Some places even charge for you $50.00 to show up within 2 hours to have your pills counted. That is not medical scam not healthcare and pain management places who feed you along with small dose of opiate medication keeping you enough pain to keep you coming pack. Also doctors who are retiring should be reaching out to other doctors so that there care in not interrupted. I had on doctor who moved his office and you would not know about it until you showed up with a note on the door. I would always show up early to make sure I had time to get to his new office since he usually moved within a few miles