Jackie Hai/KJZZ Several years ago, Shannon Hubbard developed complex regional pain syndrome in her leg. It’s considered one of the most debilitating chronic pain conditions. Recently, she says her doctor lowered her dose citing new state rules on opioids.

It started with a rolled ankle during a routine training exercise.

Shannon Hubbard never imagined it was the prologue to one of the most debilitating pain conditions known to exist, called ­­­­­­­“complex regional pain syndrome.”

“(It) makes my leg feel like it’s on fire pretty much all the time. It spreads to different parts of your body,” the 47-year-old Army veteran said.

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

“That started as a little blister and four days later it was like the size of a baseball,” she said. “They had to cut it open and then it got infected and because I have blood flow issues, it doesn’t heal.”

Soon, it will happen again.

Hubbard’s disease causes the nervous system to go haywire, creating pain disproportionate to the actual injury. The McGill Pain Index ranks CRPS worse than childbirth or amputation.

Her case is especially severe, affecting everything from how her body regulates temperature to blood flow. It manifested several years ago when she reinjured her right foot following surgery.

“Over the past three years, I’ve been prescribed over 60 different medications and combinations, none have even touched the pain,” she said.

“Over the past three years, I’ve been prescribed over 60 different medications and combinations, none have even touched the pain.”

— Shannon Hubbard

She holds up a plastic bag filled with discarded pill bottles — evidence of her elusive search for a solution to the pain.

She says she’s had injections and even traveled across the country for ketamine infusions. Her doctors have discussed amputating her leg because of the frequency of the infections.

“I’ve tried the other treatments. All I can do is manage the pain,” she said. “Opioids have become the best solution.”

For about nine months, Hubbard was on a combination of short- and long-acting opioids. She says 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.

“They told me because of the new Arizona law they had to cut me back,” she said. “They had to take one of the pills away. That had a huge impact on my pain.”

Hubbard knew about those rules. They were part of Arizona’s new opioid law, which placed restrictions on prescribing and limited 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, but with no success.

“They didn’t indicate there was any medical reason for cutting me back. It was simply because of the pressure of the opioid rules.”

Shannon Hubbard Shannon Hubbard during her service in the military.

Hubbard’s dose was lowered from 100 morphine milligram equivalents daily (MME) to 90, the highest dose allowed for many new patients in Arizona.

She considers herself fortunate that they didn’t lower it even more.

“I’m actually kind of lucky that I have such a severe case because at least they can’t say I’m crazy or it’s in my head,” she said.

Hubbard’s condition may be extreme, but her situation isn’t unique.

Faced with skyrocketing drug overdoses, states are cracking down on prescribing of opioids. Increasingly, some patients with chronic pain like Hubbard say they are becoming collateral damage.

This is the outcome that Arizona lawmakers tried to avoid when crafting the Arizona Opioid Epidemic Act, which passed earlier this year with unanimous support.

The State Response To A Crisis

The law was the culmination of months of outreach and planning by state health officials.

Arizona’s Republican Gov. Doug Ducey has taken a particularly public and aggressive stance toward the opioid overdose crisis.

Last summer, he declared a public health emergency, citing new data that two people were dying every day from opioid related overdoses. He’s also pledged to come after those responsible for the rising death toll.

“All bad actors will be held accountable — whether they are doctors, manufacturers or just plain drug dealers,” Ducey declared in his annual State of the State address.

Ducey went on to cite statistics from one rural county where four doctors prescribed 6 million pills in a single year, concluding “something has gone terribly, terribly wrong.”

Later that month, Ducey called a special session of the Arizona Legislature and in less than a week had signed the new law. He called it the “most comprehensive and thoughtful package any state has passed to address this issue and crisis to date.”

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.

National Institute on Drug Abuse Among the more than 64,000 drug overdose deaths estimated in 2016, the sharpest increase occurred among deaths related to fentanyl and fentanyl analogs (synthetic opioids) with over 20,000 overdose deaths.

Arizona’s major medical organizations got on board, although some did raise concerns prior to the law’s passage.

“We urge … policymakers to be exceptionally careful considering these sweeping changes to the delivery of healthcare to patients,” representatives of the Arizona Association of Osteopathic Medicine and Arizona Medical Association wrote in a letter to the state health department last year.

The letter goes on to point out that Arizona’s opioid prescriptions have decreased every year since 2013 and “deaths from prescription opioids are trending down compared to the staggering increases in death from heroin and fentanyl.”

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.

Before the law passed, Gov. Ducey reiterated that Arizona would “maintain access for chronic pain sufferers and others who rely on these drugs.”

To ensure that, the law would only apply to new patients, not those with existing prescriptions. It also exempted cancer, trauma and end-of-life patients, among others.

Doctors: Some Patients Are Suffering

Dr. Julian Grove knows the nuances of Arizona’s new law better than most physicians. A pain doctor, Grove worked with the state on the prescribing rules that would eventually become law.

“We moved the needle to a degree so that many patients wouldn’t be as severely affected,” said Grove who’s also president of the Arizona Pain Society. “But I’ll be the first to say this has certainly caused a lot of patients problems, anxiety."

Will Stone/KJZZ Dr. Julian Grove is a pain specialist and president of the Arizona Pain Society. He says the pressure to limit prescribing opioids has made doctors like him increasingly wary and some chronic pain patients are losing access to medicine.

“Many people who are prescribing medications have moved to a much more conservative stance and unfortunately pain patients are being negatively affected.”

Grove says that includes patients who have been on stable regimens of opioids for years without trouble. Even he has felt pressure to lower doses for patients in situations where he never would have five years ago.

“A lot of practitioners are reducing opioid medications, not from a clinical perspective, but more from a legal and regulatory perspective for fear of investigation,” Grove said. “No practitioner wants to be the highest prescriber.”

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.

“The vast majority of opioid management is now centered on where we’re at with a number,” Grove said.

Pain doctors like Grove are the ones who are supposed to provide the safety net as physicians are subject to more scrutiny. Arizona’s new prescribing rules don’t apply to board certified pain specialists. Many have undergone years of training on how to care for complex patients with chronic pain.

But Grove says the reality is doctors face pressure on many fronts to curtail opioids — from the Drug Enforcement Agency down to state medical boards. The new state law only compounded that.

“Whether it was the federal government, Medicare guidelines, separate commercial guidelines, that the reduction of opioids, [the state law] made that more fast and furious,” he said.

Grove traces the hyper-vigilance back to guidelines put out by the Centers for Disease Control and Prevention in 2016. Those 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.

“They have been grossly misinterpreted,” said psychiatrist Sally Satel.

Satel, a fellow at the American Enterprise Institute, says those guidelines stipulated the decision to lower a patient’s dose should be an individual choice, not a blanket policy.

The guidelines were not intended for pain specialists, but rather for primary care physicians, a group that accounted for nearly half of all opioids dispensed between 2007 and 2012.

Arizona Department of Health Services Possible Arizona opioid deaths June 15, 2017, to June 14, 2018.

“There is no mandate to reduce doses on people who have been doing well chronically,” Satel said.

She says in the rush to address the nation’s opioid overdose crisis the CDC’s guidelines have become the model for many regulators and state legislatures.

“It’s a very, very unhealthy, deeply chilled environment in which doctors and patients who have chronic pain can no longer work together.”

Satel calls the notion that new prescribing laws will reverse the tide of drug overdose deaths “misguided”

“They are often looked to as a strategy that can make an enormous impact on the problem, and that is not true," Satel said.

In fact, the rate of opioid prescribing nationally is at its lowest in years. Meanwhile, more people are dying from illicit drugs like heroin and fentanyl than prescription opioids.

In Arizona, more than 1,300 people died from opioid related overdoses since June of last year, 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 those who overdose in Arizona.

“Doctors are still confused by the law and some may be overreacting,” said Pete Wertheim, executive director of the Arizona Osteopathic Medical Association. “Physicians feel like the message has been sent to them is, ‘We don’t want you prescribing opioids.’”

His organization has been trying to educate its members about Arizona’s prescribing rules and the exemptions. Long before the law passed, Wertheim said physicians were already telling him they had stopped prescribing opioids because they “didn’t want the liability.”

But Wertheim says some physicians are supportive of the new rules, too.

“For some, it has been a welcome relief,” he said. “They feel like it has given them an avenue, a means to confront patients.”

Still, he worries the current climate around prescribing will squeeze an already depleted supply of pain specialists, especially in rural areas of the state. Under the law, pain clinics also have to comply with special regulations.

Many Primary Care Doctors Shying Away From Opioids

Will Stone/KJZZ Dianna Hill, 72, was on a low dose of prescription opioids to manage the pain from osteoarthritis and multiple hip surgeries.

Dianna Hill says getting to sleep has been difficult since she lost her prescription opioids.

The 72-year-old from Mesa suffers from osteoarthritis and has undergone multiple hip surgeries.

“It’s painful to move. I can’t turn over. I have to lay on my back all night long. It hurts to be on my side,” she said.

Hill uses a wheelchair and doesn’t drive because of her macular degeneration, which affects her vision. For many years, she had been on a low dose of opioids, 10 milligrams of oxycodone per day.

“It was so simple to take, it was cheap, it was expedient, it let me fall asleep,” she said.

Hill is on Medicare and goes to a nearby primary care clinic. Earlier this year, she went in for her regular appointment and discovered the clinic had a new policy for prescribing opioids. She could no longer get the medicine there.

“I was just stunned. Absolutely stunned. What am I supposed to do?” she said.

A letter from the clinic’s staff to patients states that “abuse of pain killer medications is rampant” and that Arizona’s new law “entitles officials to more aggressively prosecute those who are inappropriately prescribing.”

“Government officials have promised increased prosecution of medical providers who do not obey this law including the revoking of licenses to practice medicine,” the letter said.

It goes on to outline new tight rules for patients taking opioids, especially when those are in conjunction with other kinds of medication like muscle relaxers.

Hill could go to a pain specialist, but she’s on a fixed income — even getting a ride to one is difficult.

“When you’ve got other things to do, you don’t have a lot of extra money to spread around.”

But what the letter doesn’t say is Arizona’s new law excluded patients with existing prescriptions.

“If everybody in the primary care arena stops taking care of patients with pain, that creates a huge problem,” said Dr. Jianguo Cheng, who is president of American Academy of Pain Medicine and directs the Cleveland Clinic Pain Medicine Fellowship Program.

“We have a very limited number of pain specialists in the country and so many patients with pain,” he said.

Cheng says state laws are well-intended and have made prescribers more cautious about the risks of opioids, especially as the first line of treatment. But he also knows the scrutiny has led some doctors to “abandon” their patients with pain.

“If the medication has been serving that purpose and the patient has been using it for years with a good response, it’s only logical to continue that treatment,” Cheng said.

Will Stone/KJZZ Dr. Gerald Harris II has a practice in Glendale, Arizona, where he specializes in treating addiction. He worries the crackdown on opioids is pushing more patients with chronic pain to street drugs.

Dr. Gerald Harris II says he had “a lot of heartburn” when the law passed. Harris is a physician in Glendale, Arizona, who specializes in treating addiction.

“They were basically tying one hand behind our back and putting all the blame on providers,” Harris said.

Harris says policymakers and even some doctors are conflating patients with real addiction and those who are dependent because they take the medication every day. He’s now seeing a surge in referrals from doctors who want their chronic pain patients evaluated for addiction.

“These people are going to require higher doses, but they are not addicted,” Harris said.

Few primary care physicians are still prescribing opioids given the current climate. No doctor wants to be the "sacrificial lamb," he says.

"I see them almost on a daily basis. Their doctor is afraid and he's cut them off."

Providers don’t want to lose their livelihood and patients don’t want to lose the medications that have kept them functional for years, he says.

“Unfortunately, I have seen a great many patients turn to street heroin and other drugs to self medicate because they couldn’t get the medications they need.”

Meanwhile, he says more patients are showing up at his practice, many of them in their 20s, who are presenting with heroin addiction.

An 'Adjustment Period'

Dr. Cara Christ is one of the architects of the state’s opioid response. She’s head of the Arizona Department of Health Services and 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 says she hasn’t heard the same level of distress from patients about losing access to medicine.

“A lot of what I am hearing is that providers don’t even know the law went into effect,” she said.

It’s still too early to gauge the law’s success, but Christ says her agency is trying to educate providers and dispel any myths. For example, the state recently launched a free “Opioid Assistance and Referral Line” to help health care providers with complex patients. It’s also released a set of detailed prescribing guidelines for doctors.

“The intent was never to stop prescribers from utilizing opioids. It’s really meant to prevent a future generation from developing opioid use disorder ...”

— Dr. Cara Christ, Arizona Department of Health Services

“The new law does not require tapering,” she said. “We did not want to take those medications away from them.”

Opioid prescriptions continue to go down in Arizona.

There was a 33 percent reduction in the number of opioid prescriptions in April as compared to last year, according to state numbers. But Christ’s agency says more people are also getting help for addiction. There has been a 40 percent increase in hospitals referring patients for behavioral health treatment.

Shannon Hubbard describes her pain as “terrible” since her dose was lowered.

“It just hurts, I don’t want to walk, I don’t want to — pretty much don’t want to do anything,” said Hubbard.

Hubbard understands people are dying everyday because of the nation’s opioid crisis. One of her family members struggles with heroin addiction and she’s helping raise his daughter.

“What they are doing is not working. They are having no affect on the guy who is on the street shooting heroin and is really in danger of overdosing,” she said. “Instead they are hurting people that are actually helped by the drugs.”