It started with a rolled ankle during a routine Army training exercise. Shannon Hubbard never imagined it was the prologue to the debilitating pain conditions complex regional pain syndrome.
The condition causes the nervous system to go haywire, 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.
“My leg feels like it’s on fire pretty much all the time,” the 47-year-old said.
Hubbard props up her leg in her home east of Phoenix. It’s red and swollen, still scarred from an ulcer.
“Over the past three years, I’ve been prescribed over 60 different medications and combinations; none have even touched the pain,” she said.
“All I can do is manage the pain,” Hubbard continued. “Opioids have become the best solution.”
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.
Hubbard knew the rules were part of Arizona’s new opioid law, which places restrictions on prescribing and limits the maximum dose for most patients. She also knew the law wasn’t supposed to affect her — an existing patient with chronic pain.
Hubbard argued with the doctor, without success.
She said her pain has been “terrible” ever since.
“It just hurts,” she said. “I don’t want to walk, I pretty much don’t want to do anything.”
Hubbard’s condition may be extreme, but her situation isn’t 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
More than two dozen states have implemented laws or policies limiting opioid prescriptions in some way. The most common is to restrict a patient’s 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, the culmination of months of outreach and planning by state health officials, was passed earlier this year with unanimous support.
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.
Initially, Arizona’s major medical associations cautioned against what they saw as too much interference in clinical practice, especially since opioid prescriptions were already on the decline.
But Arizona Gov. Doug Ducey’s administration offered assurances that the law would “maintain access for chronic pain sufferers and others who rely on these drugs.” 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’s 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.
“We moved the needle to a degree so that many patients wouldn’t be as severely affected,” said Dr. Julian Grove, president of the Arizona Pain Society. “But I’ll be the first to say this has certainly caused a lot of patients problems [and] anxiety.”
Psychiatrist Sally Satel, a fellow at the American Enterprise Institute, said guidelines stipulated the decision to lower a patient’s dose should be decided on a case-by-case basis, not by means of a blanket policy.
“[The guidelines] have been grossly misinterpreted,” Satel said.
“It’s a very, very unhealthy, deeply chilled environment in which doctors and patients who have chronic pain can no longer work together,” she said.
The rate of opioid prescribing nationally has declined in recent years, though it still soars above the levels of the 1990s. Meanwhile, more people are dying from illicit drugs like heroin and fentanyl than prescription opioids.
In Arizona, more than 1,300 people have died from opioid-related overdoses since June 2017, according to preliminary state numbers. 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.
“For some, it has been a welcome relief,” he said. “They feel like it has given them an avenue, a means to confront patients.”
The organization is striving to educate its members about Arizona’s prescribing rules and the exemptions. But, he said, most doctors now feel the message is clear: “We don’t want you prescribing opioids.”
Long before the law passed, Wertheim said, physicians were already telling him that they had stopped prescribing, because they “didn’t want the liability.”
He worries the current climate around prescribing will drive doctors out of pain management, especially in rural areas. There’s also a fear that some patients who can’t get prescription pills will try stronger street drugs, said Dr. Gerald Harris II, an addiction treatment specialist in Glendale, Ariz.
Arizona’s 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’s opioid response.
Christ characterizes this as an “adjustment period” while doctors learn the new rules.
“The intent was never to stop prescribers from utilizing opioids,” she said. “It’s really meant to prevent a future generation from developing opioid use disorder, while not impacting current chronic pain patients.”
Christ said she just hasn’t heard of many patients losing access to medicine.
It’s still too early to gauge the law’s success, she said, but opioid prescriptions continue to decline in Arizona.
Hubbard considers herself fortunate that her doctors didn’t cut back her painkiller dose even more.
But she added, “What 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. Instead they are hurting people that are actually helped by the drugs.”
By Will Stone, KJZZ: This story is part of a partnership that includes KJZZ, NPR and Kaiser Health News.