Rhonda Favero’s existence has been anything but easy. But it has been manageable, enjoyable even.
Favero suffers from cervical spine degeneration, as well as a disorder that causes her brain tissue to slump into the cavity of her spinal canal, a condition known as Chiari malformation.
The only thing she says that holds the chronic pain at bay, enough for her to work part-time and volunteer, is the opioid treatment she’s been on for the past 20 years.
It’s a quality of life she is fighting desperately to hold onto.
As the opioid epidemic continues to ravage the country, chronic pain patients like Favero say they have become casualties in the drastic, far-reaching effort to correct the crisis.
For the past year, Favero’s doctor has been tapering her opioid dosage little by little — not because he believes she needs it, but because of the immense outside pressure surrounding use of the drug, she said.
“I don’t think I could live very long with the pain this bad,” said Favero, 58, a Hemet resident who is considering quitting her job at a senior center. “It’s getting even worse with more tapering.”
An estimated 25 million Americans live with chronic pain, and those on opioids have become a liability that many doctors would rather not deal with altogether.
Doctors are being scrutinized more than ever for their prescribing practices. There is criticism that one watchdog campaign by the California Medical Board has gone too far.
Many primary care physicians, too nervous to manage long-term treatments and not willing to take the extra time required of these high-maintenance patients, are passing them off onto overburdened pain specialists.
“Their doctors are deserting them, wholesale, en masse,” said Richard Lawhern, an advocate for the chronic pain community. He added: “There’s a real, unintended crisis occurring in the attempt to suppress opioids.”
The severity of the opioid epidemic can’t be underestimated.
In 2016, 42,249 people fatally overdosed on opioids — both illicit and prescription, according to the Centers for Disease Control and Prevention.
Most of the death toll was attributed to illicit fentanyl, a potent synthetic heroin that has taken over the street market. It is often disguised in pill form as oxycodone — drug traffickers’ way of capitalizing on the demand for prescription meds.
Prescription drugs were involved in an estimated 34 percent of the deaths, the CDC reported in 2018. However, the data does not specify how many deaths involved patients who were prescribed the drug, if the drug was obtained illicitly or if it was being abused.
While the origins of the epidemic are complex and still debated, the medical community has admitted its role in liberally prescribing painkillers without true understanding of the risks or effects of the drug.
“We can’t underdemonize them,” Dr. Mark Wallace, chair of the Division of Pain Medicine at UC San Diego Health, said of opioids. “We made a mistake back in the early ‘90s when we opened the door for unlimited opioid use.”
The effort to combat the rising fatalities and addiction has been comprehensive, with laws, policy and guidelines touching every corner of the healthcare industry.
At the same time, the medical community’s understanding of opioids has dramatically changed. A growing body of research has led to a general consensus that opioids are not the best treatment for long-term pain — and could be making it worse.
Opioid prescriptions overall have declined in the past few years in California, from around 24.6 million in 2015 to 20 million in 2018, according to data from the state Department Health.
Chronic pain patients point to 2016 as a touchstone moment in what they see as the war against opioids. That’s when the CDC issued new opioid prescribing guidelines, recommending dosages of no more than 90 morphine milligram equivalents, or MME, per day.
The guidelines are more geared toward general practitioners. But the recommendations have been taken as law in many ways, widely shaping medical practice policy and setting limits as to what insurance companies are willing to pay for and major pharmacies are willing to fill.
As a result, many chronic pain patients are being tapered to lower dosages even if they are benefiting from amounts over 90 MME.
Wallace, who has a small number of patients he keeps on long-term opioid treatments, says the hard-line interpretation is troubling and undermines the art of medicine.
“You have to look at each patient individually. It’s hard, it’s challenging, especially in this opioid crisis,” he said. “They don’t want us to do that.”
Many doctors agree that the 90 MME amount is arbitrary. “There’s no real science behind it,” said Dr. Jianguo Cheng, a Cleveland-based doctor and president of the American Academy of Pain Medicine.
The CDC stresses that the guidelines are merely recommendations, meant to encourage communication and ensure patients have safer, more effective treatment while also reducing addiction and overdose.
“In disseminating the Guideline, CDC continues to emphasize that it is important that patients receive appropriate pain treatment, and that the benefits and risks of treatment options are carefully considered,” CDC public health analyst Gabraelle Lane said in a statement to the Union-Tribune.
The guideline figures prominently into a new rule that went into effect Jan. 1 for patients enrolled in Medicare’s Part D and Advantage drug programs. Opioid prescriptions above 90 MME now trigger an alert to the pharmacist, who must consult with the doctor before filling the order. Insurance companies can also refuse to fill prescriptions over 200 MME.
In 2016, 1.6 million Medicare patients were being maintained on dosages above the 90 MME guideline, the Centers for Medicare and Medicaid Services reported.
Addiction vs. dependence
The opioid epidemic has resulted in some tough conversations in doctors’ offices throughout the country.
Using what they know today about opioids, doctors are having to completely re-evaluate each patient’s highly individualized basis of pain and treatment.
“There’s nothing wrong with engaging,” said Dr. Ole Snyder, a family medicine physician and chairman of Scripps Health’s Opioid Stewardship Program. “No patient should get upset over a potential alternative to opioids,” he said, noting the unlikely benefit of high doses of opioids in the long term. “That being said, doctors shouldn’t cut them off and say good luck.”
The middle ground — lower opioid dosages combined with alternative treatments — can be understandably challenging to negotiate.
Tapering opioid dosages too much, too fast can bring more pain and even withdrawal symptoms. Exploring alternate treatments can be a long process, during which the pain may not be adequately treated.
“Those patients who are already on them, it is very hard to get them off,” Wallace said. Although he notes many patients who have successfully tapered admit they feel better.
Doctors have to make another difficult assessment: Is the patient addicted or dependent? It is sometimes a fine line.
According to the National Institute on Drug Abuse, physical dependence on a drug is when the body adapts to the drug, requiring more to achieve the same effect and causing physical or mental symptoms if suddenly stopped.
Addiction is the compulsive use of a drug, characterized by behavior to try to get the drug despite harm and by an inability to stop.
Many chronic pain patients argue that they are dependent on opioids — it’s the nature of the drug and to be expected at high doses — but they are not addicted. They follow doctors’ orders, stick to their prescriptions, don’t mix with illicit substances and don’t seek a high.
Other times it’s not so clear.
“It’s a very complex area,” said Wallace. “Am I treating an addiction or am I treating pain? Sometimes I come to the conclusion I’m treating both.”
Wallace said writing an opioid prescription always comes with a little anxiety.
“It’s not an easy situation. It tears me apart. As a doctor I’m always questioning myself: Am I doing the right thing?”
Those doctors who do ultimately decide long-term opioid treatment is best are signing up for a lot more work.
Treatment plans and appointments must be intensely documented. Patients must be regularly urine tested for other substances and their prescription drug history checked for red flags of abuse. There are constant battles with insurance companies and pharmacies to pay for and fill prescriptions.
Opioid prescribers should also expect intense scrutiny.
“If you compare people on opioids to people without, there’s a significant increase in the mortality rate. That’s a good reason to have close monitoring,” Cheng said.
“A physician who specializes in opioids is going to be a huge problem.”
What, and how much, doctors are prescribing are being watched closer than ever.
An analysis by George Mason University researcher Tony Yang on this issue showed adverse actions against physicians by the U.S. Drug Enforcement Administration had quadrupled from 2011 to 2014, from 88 to 371 cases, according to a 2017 study published in the American Journal of Medicine.
Robert Harkins, a supervisory DEA agent in San Diego, said doctors shouldn’t worry about the ramped-up investigations as long as they can show the prescriptions were for legitimate medical needs.
“It’s a very honest assessment,” he said.
In California, much of the scrutiny is coming from the state Medical Board.
Rather than wait for complaints to come in, the licensing board decided to root out dangerous prescribing practices on its own by launching the Death Certificate Project.
In 2015, the board obtained data on all prescription drug deaths for 2012 and 2013 — a total of nearly 2,700 cases. It then identified the prescribers by looking at the statewide prescription drug monitoring database, called CURES.
More than 450 prescribers came under initial suspicion. They received stern letters from the board that a complaint had been filed against them.
The doctors were interviewed, their summaries of care and treatment requested for review. The next of kin of the overdose victims were contacted for their cooperation and permission to view medical files.
Most of the investigations closed out favorably to the doctors, although the experience left a chilling effect on many.
In a December letter to the board, Kelly Pfeifer, a California Health Care Foundation director, said there is “growing concern that the letters are causing harm” and could worsen a shortage of providers willing to deal with patients reliant on high dosages of opioids.
“I have had conversations with several physicians who report they have changed their prescribing practice, to the detriment of patient care, either from receiving a letter or knowing someone who has,” she wrote. She has asked the medical board to re-evaluate its project, which was first reported by MedPage Today.
The medical board has defended its proactive approach, pointing to pain prescribing guidelines that the board put in place in 2012 and 2014 that doctors should be following and are now being held to.
“The Board is a consumer protection, licensing and regulatory agency,” said agency spokesman Carlos Villatoro, “and this is its highest priority.”
So far, the project has resulted in formal accusations against 23 doctors — including six in San Diego County — filed by the state Attorney General’s Office. Only three cases have been resolved: one doctor agreed to a public reprimand, one to probation, and one was charged with a felony in state court and his medical practice put on probation for seven years after a brief suspension.
One of the doctors administratively charged is Dr. Bradley Chesler, a pain management specialist in Escondido. He is accused of negligence and excessive prescribing to five patients, including one who fatally overdosed with alcohol and a cocktail of prescription medications in his system.
Chesler’s attorney, David Rosenberg, declined to comment on the case because it is still ongoing. But he’s had many clients in similar positions.
“The vast majority of them are trying to do what’s best for their patients,” the lawyer said.
When it becomes clear that patients aren’t following their medication program, Rosenberg explained, doctors are faced with a question: continue to work with the patients, or get rid of them?
“The American Medical Association tells you don’t abandon your patients. They will turn to fentanyl or heroin and wind up dead or commit suicide or be in a very bad place,” Rosenberg said. “These are a very challenging group of patients that need incredible skill and judgement on the part of the pain management doctor.”
Favero, the Hemet woman dealing with spinal issues, is one of Chesler’s patients.
She said the oversight has had a chilling effect, resulting in the tapering of her opioid treatment.
“I was one of those people, ‘I’m not going to take any pills,’” Favero explained of her early struggles to treat her conditions. She said she tried many other therapies that didn’t work. “I just didn’t have any more alternatives.”
She’s been put on palliative care — a status for the seriously ill, with less rigid prescribing guidelines — but it’s still been difficult to find a doctor to take her on full-time.
“I’d like to see some of these people …” Favero faltered. “They wouldn’t be able to live a day in my shoes.”
A lifeline on the line
For many physicians, dealing with pain patients has just become too complicated and fraught with too much risk.
“Some family or primary care physicians have completely stopped seeing patients with chronic pain,” said Cheng. “Some are going to three, four, five doctors to try to find a pain management specialist who will take care of them.”
In some cases, the refusal to treat pain has ended in suicide.
A 2018 study published in the Annals of Internal Medicine suggest suicide among chronic pain patients has grown from 7 percent in 2003 to 10 percent in 2014 — an amount that is likely underestimated. Researchers noted that the percentage of people suffering from chronic pain also rose during this period.
It is a difficult subject to research, given the lack of suicide notes in many cases and the anxiety and depression that can accompany chronic pain. More than two-thirds of the suicide notes that were reviewed mentioned pain as a factor.
Suicidal thoughts are not uncommon among this population, pain patients say.
“There’s some points where it’s so bad, I look at my spouse — I just don’t even know if it’s worth it anymore. I just hurt,” said Elizabeth, an editor who has been dealing with chronic pain for a few years. She does not want to be identified by her full name for fear of retaliation. “I feel like I’m making the people around me miserable, I’m miserable.”
Elizabeth traces her chronic pain to her days as a 20-something Air Force radio technician.
She had been helping a co-worker fuel a cargo plane when her boots slipped on the aircraft’s icy metal interior. Her head struck the bottom frame of the open doorway before she plummeted 15 feet to the ground below.
She nursed a concussion in the hospital for a week.
“Life went on,” the 63-year-old San Diego County resident said. “Now, 40 years later, that has started to come back and haunt me.”
Three discs in her neck are deteriorating. It causes severe neck and shoulder pain, and what she describes as bizarre “shots of electricity” going through her head, mostly focused behind her right eye.
“Everything my doctors have asked me to do, I’ve done,” she said of alternative therapies. Surgery, nerve blocks and Botox treatments have all helped somewhat. But it’s her medication that she says offers the best relief: gabapentin for the nerve pain; Soma, a muscle relaxant; and hydrocodone, an opioid painkiller.
“It provides me the ability to not focus on my headache, but to be able to focus on my work,” she said.
It’s a constant battle with her doctor to stay on the medication. But her doctor’s discomfort with continuing to prescribe an opioid painkiller is outweighed by sympathy — for now, Elizabeth said.
“To me, it’s my lifeline. It’s my thread to be able to live a normal life,” she explained.
“If I wasn’t able to do that, I just don’t know where I’d be or what I’d be doing.”
Don’t Punish Pain rally
What: The chronic pain community will rally in cities nationwide, calling on legislators to protect legitimate opioid treatment
When: 11 a.m. Jan. 29
Where: County Administration Center, Waterfront Park, 1600 Pacific Highway, San Diego