New federal  restrictions on prescription painkillers are having an unintended consequence: many chronic pain patients can’t get the relief they need, and some are even resorting to illegal drugs to help them cope.

Over five years 7,400 people have died in California alone due to prescription opioid overuse and overdose, according to the California HealthCare Foundation. And nationally from 1999 to 2013 drug poisoning deaths related to opioid pain medications nearly quadrupled, reported the Centers for Disease Control and Prevention.

On Oct. 6, 2014 the U.S Drug Enforcement Administration moved hydrocodone combination drugs, like Vicodin, Norco and Lortab, from Schedule III to a more restrictive class, Schedule II, which includes drugs like morphine and oxycodone. Typically patients can only get prescriptions for 30-day supplies with no refills and have to visit their doctor monthly unless their doctor deems it appropriate to write three prescriptions for a 90-day supply. Prescriptions must be hand written and delivered to the pharmacy, not called or faxed in.

Many chronic pain patients and physicians say the crackdown has caused patients to be stigmatized, treated like drug addicts and criminals at pharmacy counters and doctors’ offices. They’re having to submit to urine drug tests, which can cost between $600 and $2,000, and sign controlled substance agreements. In some cases doctors are “firing” patients or simply refusing to see chronic pain patients.

An online survey in February by the National Fibromyalgia and Chronic Pain Association (NFCPA) in cooperation with health care professionals tracked the consequences of the rescheduling. It received more than 3,000 responses in 72 hours.

More than ninety percent of survey responders have fibromyalgia, a disorder which includes widespread musculoskeletal pain. More than 50 percent of responders said they experience increased stigma from being a pain patient, ninety percent reported increased out-of-pocket costs, nine percent said their dose was lowered, another nine percent said their dose was immediately discontinued and twenty-four percent said they were unable to get medications filled at the pharmacy.

Janet Chambers, president of NFCPA and a member of the FDA panel considering the rescheduling, acknowledges the seriousness of opioid abuse, but says that chronic pain is also an epidemic. It affects one third of the U.S. population, according to a 2011 report from the Institute of Medicine, highlighting the lack of support for pain research at the National Institutes of Health.

Catherine Cartwright of Vallejo has been dealing with constant pain since she fell at work 18 years ago, blowing out a disc in her back. For four years, Cartwright said, she tried not to take pain medications, but said the pain made her “loony.” Now she takes hydrocodone medication every day, but not enough to completely stop the pain.

“Pain medication works on your body but it also works on your brain. I don’t want to walk around out of it. I have to live and be able to function,” said Cartwright.

She also goes to a chiropractor, although her income limits those visits, does water aerobics and physical therapy. And she is the American Chronic Pain Association’s regional director for the Northern Bay Area. She leads peer support groups offering education in pain management skills.

She said sometimes she gets funny looks at the pharmacy when filling her prescriptions and she frequently hears from patients unable to access pain medication from their doctors.

“There’s a barrier between the physician and patient relationship. I’m feeling that with my patients, I think we all are. It’s almost like I’m part of law enforcement,” said Edward Michna, a board member of the American Pain Society and an anesthesiologist at Brigham and Women’s Hospital in Boston.

There are a lot of disincentives for doctors treating patients with opioids. Physicians have to do risk assessments, monitor patients closely, give them shorter prescriptions and schedule more follow-ups, for which compensation is horrible, Michna said. Then there are the legal risks of treating people who may misuse the drugs.

“Patients are being dumped out of practices,” he said. Michna agrees that Vicodin should be a class II drug, but he said the FDA didn’t make any allowances for the impact the change has on patients.

Paying for alternatives to pain medication is another challenge. Pain clinics, chiropractors, physical therapists and psychotherapy cost insurance companies a fortune, Michna said.

“We know that the best treatments are multi-disciplinary,” Chambers said. But people have to have something to stop overwhelming pain before they can even consider alternatives, she said.

The NFCPA survey showed that 17 percent of respondents who were unable to get their hydrocodone prescriptions filled turned to marijuana and 13 percent used alcohol.

Theresa Ullrich, a nurse practitioner with St. Jude Community Clinic in Orange said doctors are cutting off patients from hydrocodone combination drugs and patients are resorting to heroine.

“It’s a huge epidemic in Orange County,” she said. A former physician in her clinic liberally prescribed hydrocodone drugs and his patients ended up in detox facilities, she said.

Based on the rising number of opioid-related deaths, many doctors believe the rescheduling was the right thing to do.

“Prescribers have been grossly underestimating how addictive they are. The federal government was telling them it’s a less addictive drug by categorizing it as a schedule III drug,” said Andrew Kolodny, director of Physicians for Responsible Opioid Prescribing and medical director of Phoenix House, a national nonprofit addiction treatment agency.

“The active ingredient in hydrocodone combination drugs is essentially heroine,” he said.
Because of their potency and risk of diversion to the black market, Schedule II drugs have to be stored in a safe and tracked carefully by pharmacies accounting for patients having to wait longer for prescriptions and getting questioned by pharmacists.

“Before rescheduling a large vat of hydrocodone combination drugs could have fallen off the back of a truck without anyone noticing,” Kolodny said.

He considers these drugs poor treatments for fibromyalgia, low back pain and headache. They can actually make the pain worse, he said, due to a condition called hyperalgesia, making the patient more sensitive to pain.

But some doctors say there are patients who tolerate hydrocodone drugs long term just fine.

“There is a subset of people who do well and have functional improvement on long-term opioids and can stay on lower and safer doses, particularly the elderly with osteoarthritis,” said Stephen Henry, a primary care physician at the UC Davis Medical Group.

But given more data over the last five years about the risks and harms of long-term opioid use, Henry is now much less likely to prescribe opioids for acute pain and more careful to use it for shorter periods of time, he said.

What almost everyone agrees on is the need for more pain research. In May the federal Interagency Pain Research Coordinating Committee, released the National Pain Strategy, designed to guide a cultural transformation in pain prevention, care, education and research.

Chambers was one of the patient advocates involved, but she said there’s not yet any plan for proceeding.

“We want Congress to appropriate enough money for an office or even a person within HHS (U.S. Department of Health and Human Services) to put the steps in place to implement this National Pain Strategy,” she said. “Nobody’s feet are being held to the fire.”