Patients With Chronic Pain Feel Caught In An Opioid-Prescribing Debate

8 years ago

It started with a rolled ankle during a routine Army training exercise. Shannon Hubbard never imagined it was the prologue to one of the most debilitating pain conditions known to exist, called 颅颅颅颅颅颅颅complex regional pain syndrome.

The condition causes the听, creating pain disproportionate to the actual injury. It can also affect how the body regulates temperature and blood flow.

For Hubbard, it manifested years ago following surgery on her foot听鈥� a common way for it to take hold.

鈥淢y leg feels like it鈥檚 on fire pretty much all the time. It spreads to different parts of your body,鈥� the 47-year-old veteran said.

Hubbard props up her leg, careful not to graze it against the kitchen table in her home east of Phoenix. It鈥檚 red and swollen, still scarred from an ulcer that landed her in the hospital a few months ago.

鈥淭hat started as a little blister and four days later it was like the size of a baseball,鈥� she said. 鈥淭hey had to cut it open and then it got infected, and because I have blood flow issues, it doesn鈥檛 heal.鈥�

She knows it鈥檚 likely to happen again.

鈥淥ver the past three years, I鈥檝e been prescribed over 60 different medications and combinations; none have even touched the pain,鈥� she said.

Hubbard said she鈥檚 had injections and even traveled across the country for infusions of ketamine, an anesthetic that can be used for pain in extreme cases. Her doctors have discussed amputating her leg because of the frequency of the infections.

鈥淎ll I can do is manage the pain,鈥� she said. 鈥淥pioids have become the best solution.鈥�

For about nine months, Hubbard was on a combination of short- and long-acting opioids. She said it gave her enough relief to start leaving the house again and do physical therapy.

But in April that changed. At her monthly appointment, her pain doctor informed her the dose was being lowered. 鈥淭hey had to take one of the pills away,鈥� she said.

Hubbard knew the rules were part of Arizona鈥檚听, which places restrictions on prescribing and limits the maximum dose for most patients. She also knew the law听听鈥� an听别虫颈蝉迟颈苍驳听patient with chronic pain.

Hubbard argued with the doctor, without success. 鈥淭hey didn鈥檛 indicate there was any medical reason for cutting me back. It was simply because of the pressure of the opioid rules.鈥�

Her dose was lowered from 100 morphine milligram equivalents daily (MME) to 90, the highest dose allowed for many new patients in Arizona. She said her pain has been 鈥渢errible鈥� ever since.

鈥淚t just hurts,鈥� she said. 鈥淚 don鈥檛 want to walk, I pretty much don鈥檛 want to do anything.鈥�

Hubbard鈥檚 condition may be extreme, but her situation isn鈥檛 unique. Faced with skyrocketing drug overdoses, states are cracking down on opioid prescribing. Increasingly, some patients with chronic pain like Hubbard say they are becoming collateral damage.

New Limits On Prescribing

惭辞谤别听听have implemented laws or policies limiting opioid prescriptions in some way. The most common is to restrict a patient鈥檚 first prescription to a number of pills that should last a week or less. But some states like Arizona have gone further by placing a ceiling on the maximum dose for most patients.

The Arizona Opioid Epidemic Act,听the culmination of months of outreach and planning by state health officials, was passed听earlier this year with unanimous support.

It started in June 2017, when Arizona Gov. Doug Ducey, a Republican,听, citing new data, showing that two people were dying every day in the state from opioid overdoses.

He has pledged to come after those responsible for the rising death toll.

Arizona Gov. Doug Ducey鈥檚 moves against opioid over-prescribing initially faced resistance from the state鈥檚 medical associations.(Will Stone/KJZZ)

鈥淎ll bad actors will be held accountable 鈥� whether they are doctors, manufacturers or just plain drug dealers,鈥� Ducey said in his听, in January 2018.

The governor cited statistics from one rural county where four doctors prescribed 6 million pills in a single year, concluding 鈥渟omething has gone terribly, terribly wrong.鈥�

Later in January, Ducey called a special session of the Arizona legislature and in less than a week he signed the Arizona Opioid Epidemic Act into law. He called it the 鈥渕ost comprehensive and thoughtful package any state has passed to address this issue and crisis to date.鈥�

The law expands access to addiction treatment, ramps up oversight of prescribing and protects drug users who call 911 to report an overdose from prosecution, among other things.

Initially, Arizona鈥檚 major medical associations听听what they saw as too much interference in clinical practice, especially since opioid prescriptions were already on the decline.

Gov. Ducey鈥檚 administration offered assurances that the law would 鈥渕aintain access for chronic pain sufferers and others who rely on these drugs.鈥� Restrictions would apply only to new patients. Cancer, trauma, end-of-life and other serious cases were exempt. Ultimately, the medical establishment came out in favor of the law.

Pressure On Doctors

Since the law鈥檚 passage, some doctors in Arizona report feeling pressure to lower patient doses, even for patients who have been on stable regimens of opioids for years without trouble.

Dr. Julian Grove knows the nuances of Arizona鈥檚 new law better than most physicians. A pain doctor, Grove worked with the state on the prescribing rules.

鈥淲e moved the needle to a degree so that many patients wouldn鈥檛 be as severely affected,鈥� said Grove, president of the听听鈥淏ut I鈥檒l be the first to say this has certainly caused a lot of patients problems [and] anxiety.鈥�

鈥淢any people who are prescribing medications have moved to a much more conservative stance and, unfortunately, pain patients are being negatively affected.鈥�

Dr. Julian Grove, a pain specialist, says that doctors were already facing pressure on many fronts to reduce treatment by opioids in Arizona.(Will Stone/KJZZ)

Like many states, Arizona has looked to its prescription-monitoring program as a key tool for tracking overprescribing. State law requires prescribers to check the online database. Report cards are sent out comparing each prescriber to the rest of their cohort. Clinicians consider their scores when deciding how to manage patients鈥� care, Grove said.

鈥淎 lot of practitioners are reducing opioid medications, not from a clinical perspective, but more from a legal and regulatory perspective for fear of investigation,鈥� Grove said. 鈥淣o practitioner wants to be the highest prescriber.鈥�

Arizona鈥檚 new prescribing rules don鈥檛 apply to board-certified pain specialists like Grove, who are trained to care for patients with complex chronic pain. But, said Grove, the reality is that doctors 鈥� even pain specialists 鈥� were already facing pressure on many fronts to curtail opioids 鈥� from the Drug Enforcement Agency to health insurers down to state medical boards.

The new state law has only made the reduction of opioids 鈥渕ore fast and furious,鈥� he said.

Grove traces the hypervigilance back to听put out by the Centers for Disease Control and Prevention in 2016. The CDC spelled out the risks associated with higher doses of opioids and advised clinicians when starting a patient on opioids to prescribe the lowest effective dosage.

Psychiatrist Sally Satel, a fellow at the American Enterprise Institute, said those guidelines stipulated the decision to lower a patient鈥檚 dose should be decided on a case-by-case basis, not by means of a blanket policy.

鈥淸The guidelines] have been grossly misinterpreted,鈥� Satel said.

The guidelines were not intended for pain specialists, but rather for primary care physicians, a group that accounted for nearly听听dispensed from 2007 to 2012.

鈥淭here is no mandate to reduce doses on people who have been doing well,鈥� Satel said.

In the rush to address the nation鈥檚 opioid overdose crisis, she said, the CDC鈥檚 guidelines have become the model for many regulators and state legislatures. 鈥淚t鈥檚 a very, very unhealthy, deeply chilled environment in which doctors and patients who have chronic pain can no longer work together,鈥� she said.

Satel called the notion that new prescribing laws will reverse the tide of drug overdose deaths 鈥渕isguided.鈥�

The rate of opioid prescribing nationally听听though it still soars above the levels of the 1990s. Meanwhile, more people are听听than prescription opioids.

In Arizona, more than 1,300 people have died from opioid-related overdoses since June 2017,听. Only a third of those deaths involved just a prescription painkiller.

Heroin is now almost as common as oxycodone in overdose cases in Arizona.

A Range Of Views

Some physicians support the new rules, said Pete Wertheim, executive director of the Arizona Osteopathic Medical Association.

鈥淔or some, it has been a welcome relief,鈥� he said. 鈥淭hey feel like it has given them an avenue, a means to confront patients.鈥� Some doctors tell him it鈥檚 an opportunity to have a tough conversation with patients they believe to be at risk for addiction or overdose because of the medication.

The organization is striving to educate its members about Arizona鈥檚 prescribing rules and the exemptions. But, he said, most doctors now feel the message is clear: 鈥淲e don鈥檛 want you prescribing opioids.鈥�

Long before the law passed, Wertheim said, physicians were already telling him that they had stopped prescribing, because they 鈥渄idn鈥檛 want the liability.鈥�

He worries the current climate around prescribing will drive doctors out of pain management,听There鈥檚 also a fear that some patients who can鈥檛 get prescription pills will try stronger street drugs, said Dr. Gerald Harris II, an addiction treatment specialist in Glendale, Ariz.

Harris said he has seen an increase in referrals from doctors concerned that their patients with chronic pain are addicted to opioids.听He receives new patients 鈥� almost daily, he said 鈥� whose doctors have stopped prescribing altogether.

Dr. Gerald Harris II, an osteopathic physician, specializes in treating addiction in Glendale, Ariz. He says he鈥檚 seen an increase in referrals from doctors concerned that their patients with chronic pain are addicted to opioids.(Will Stone/KJZZ)

鈥淭heir doctor is afraid and he鈥檚 cut them off,鈥� Harris said. 鈥淯nfortunately, a great many patients turn to street heroin and other drugs to self-medicate because they couldn鈥檛 get the medications they need.鈥�

Arizona鈥檚 Department of Health Services is working to reassure providers and dispel the myths, said Dr. Cara Christ, who heads the agency and helped design the state鈥檚 opioid response. She pointed to the recently launched听听created to help health care providers with complex cases. The state has also released a set of detailed prescribing guidelines for doctors.

Christ characterizes this as an 鈥渁djustment period鈥� while doctors learn the new rules.

鈥淭he intent was never to stop prescribers from utilizing opioids,鈥� she said. 鈥淚t鈥檚 really meant to prevent a future generation from developing opioid use disorder, while not impacting current chronic pain patients.鈥�

Christ said she just hasn鈥檛 heard of many patients losing access to medicine.

It鈥檚 still too early to gauge the law鈥檚 success, she said, but opioid prescriptions continue to decline in Arizona.

Arizona saw a 33 percent reduction in the number of opioid prescriptions in April, compared with the same period last year, state data show. Christ鈥檚 agency reports that more people are getting help for addiction: There has been about a 40 percent increase in hospitals referring patients for behavioral health treatment following an overdose.

Shannon Hubbard, the woman living with complex regional pain syndrome, considers herself fortunate that her doctors didn鈥檛 cut back her painkiller dose even more.

鈥淚鈥檓 actually kind of lucky that I have such a severe case because at least they can鈥檛 say I鈥檓 crazy or it鈥檚 in my head,鈥� she said.

Hubbard is well aware that people are dying every day from opioids. One of her family members struggles with heroin addiction and she鈥檚 helping raise his daughter. But she鈥檚 adamant that there鈥檚 a better way to address the crisis.

鈥淲hat they are doing is not working. They are having no effect on the guy who is on the street shooting heroin and is really in danger of overdosing.鈥� she said. 鈥淚nstead they are hurting people that are actually helped by the drugs.鈥�

This story is part of a partnership that includes , and Kaiser Health News.