First it was a hip replacement. Then it became complicated by a MRSA infection. Eventually, Dee Giles, formerly an ER nurse, had to endure amputation of her right leg and the right half of her pelvis. She also lives with osteoarthritis, a degenerative joint disease that causes immense pain over time. Her arthritis and phantom limb pain were so severe that she required ongoing prescriptions for morphine and oxycodone—both classified by the DEA as Schedule II narcotics.
Receiving ongoing prescriptions for controlled substances is not easy. Even though Giles, who is 49 and lives in the tiny city of Powell, Wyoming, was seeing the same doctor consistently for six years, she had to submit to regular urine drug tests and “pill counts,” in order to ensure she was not taking more than prescribed. All of her tests came back fine, and she says she was never under suspicion of misusing her medication.
Which is good, because it was the only thing that was allowing her to get through the day.
But at one of her appointments in 2016, her doctor told her he would give her one more month of medication and then she would need to find a new prescriber. He confessed that he would no longer be prescribing opioids out of fear of being reprimanded for over-prescribing. Because Giles had already tried non-pharmacological approaches to pain management to no effect, he was discharging her as a patient.
Giles tried to find another doctor in Powell who would be willing to write the same scripts, but she couldn’t. Her doctor also did not taper her from her medication, even though prolonged use of opioids results in physical dependency. Physical dependency is different from addiction. The latter is a psychological condition of compulsively using drugs despite negative outcomes; dependency occurs with a range of medications—not just opioids—and simply means that a person’s body has become so adjusted to the use of the drug that it will go through withdrawal if the medication is suddenly withheld.
“Slowly, the withdrawal symptoms got better, but the pain has gotten worse ever since.”
“I not only had a severe increase in pain,” says Giles of her withdrawal, “I had almost a month of constant vomiting. I ended up in the emergency room twice just to get IV fluids because I wouldn’t keep anything down. I couldn’t sleep. I had muscle twitches and restless leg syndrome type symptoms … slowly, after a month, the withdrawal symptoms got better, but the pain has gotten worse ever since.”
In the year prior, Giles had had a near-fatal reaction to an NSAID (anti-inflammatory drug). Without opioids or NSAIDs, she was left with only acetaminophen, the active ingredient in Tylenol, which comes with its own set of health concerns when overused, to manage her pain. She found it completely inadequate.
Now Giles says she spends most of her time on the couch, unable to even move much around her house. She goes online a lot, and connects with other pain patients there. That’s how she knows she is far from alone.
In 2016, the year Giles was cut off her from her meds, the Centers for Disease Control released a set of guidelines meant to help physicians engage in better opioid prescriptions practices after reports came out that some doctors were taking bribes from pharmaceutical representatives to over-prescribe painkillers.
The guidelines themselves are not inherently unreasonable. They focus on suggestions like giving patients the lowest effective dose possible, and taking measures to ensure patients are not misusing their pills (like the drug tests and pill counts Giles engaged in). The problem, however, has been the response.
The DEA has begun using these guidelines as a basis for identifying “over-prescribers.” These types of responses often don’t take into account the fact that certain kinds of doctors—such as those who specialize in the treatment of pain, or treat more people from certain populations or professions—will be inherently required to prescribe more opioids than others.
These changes are linked to the same misinformation and stigma that keep hundreds of thousands of opioid use disorder patients from accessing the most effective medicines.
Physicians across the nation have responded by tapering patient doses or, as Giles experienced, simply refusing to prescribe opioids at all. Now, at least 26 states have enacted laws limiting the dispensing of opioids to three-to-seven days at a time for non-cancer pain.
These changes are directly linked to the same misinformation and stigma that keep hundreds of thousands of opioid use disorder patients from accessing the most effective medicines for their disorder. Fearmongering surrounding the safety and efficacy of opioids has driven people to equate their use with addiction and death. (Some media outlets have even reported, falsely, that certain opioid formulations are so lethal you can die just by touching someone who has used them.)
But the numbers don’t back up these claims. Even the CDC admits that most long-term opioid patients will not become addicted to their medication. And when they do, there is an effective medication that can treat both pain and addiction: methadone.
Drug legalization advocates argue that this is more than mere correlation; by prescribing fewer opioids than people need, doctors are driving patients to the streets, where unregulated illicit supplies are fickle and dangerous. The data back this: Most opioid-related deaths are related to illicit supplies of drugs like heroin and fentanyl.
“Abandonment of care; we are certainly seeing a lot of that right now because of the regulatory oversight physicians are under,” says Kate Nicholson, a civil rights attorney who spent 20 years with the Department of Justice and was a primary drafter of the regulations under the Americans with Disabilities Act.
Nicholson, who herself lives with chronic pain and experienced physician abandonment in 2014, believes that pain patients’ rights will be the next big ADA litigation dispute. She thinks it’s only a matter of time until one of these cases gets federal attention—and she believes that a far better understanding of addiction will be a deciding factor in the ultimate outcome.
“One of the biggest issues in the policy department is the conflation of dependency and addiction. Non-compulsive, appropriate use with life-restoring effects—that’s the polar opposite of addiction. I think in order to get people to understand, you have to draw that distinction first.”
The results of this conflation are severe across diagnoses. Addiction patients are being denied access to methadone and buprenorphine, opioid-based medications proven to treat opioid addiction—and this denial is leading to death by overdose or other complications of continued drug use. Chronic pain patients, meanwhile, are being labeled as “addicts” and treated with suspicion simply because they require a type of medicine to which only a tiny minority of patients will become addicted.
As Anna Fuqua, a pain patient and former nurse, has written in the Washington Post, some abandoned patients have become so overwhelmed by their pain that they have resorted to suicide.
“Sometimes the list grows weekly, sometimes daily … That’s my opioid crisis.”
This horrifying phenomenon is discussed fervently on social media and pain management boards. In a blog post on NationalPainReport.com, Dr. Geralyn Datz described the shattering experience of learning one of her patients had taken his own life after losing access to his medication for financial reasons.
One Twitter user recently shared, “My 27 year old son had chronic severe pain from scoliosis surgery 4 yrs ago. Because he was young no one wanted to prescribe typical opioids. He was on tramadol. He committed suicide last saturday.”
And on Medium, doctors Erin O. LeBlanc and Thomas F. Kline published a heartbreaking litany of stories about pain patients who killed themselves after being denied access to the drugs that most effectively managed their pain.
Some of these online stories unfortunately employ language that blame people who use drugs, like the hashtag “#patientsnotaddicts.” This anger from the chronic pain community is understandable, but ultimately misguided. Addiction is as legitimate a condition as those which cause chronic pain. It is the misunderstanding of addiction, its causes, and the efficacy of opioid-based medication that is hurting addiction patients and chronic pain patients alike.
Until that is better understood by governing parties, and the appropriate corrections are made to dispensing regulations, the death toll will continue to pile up for both sets of patients.
“In 2014, I started keeping a list of pain patients who had committed suicide, unable to cope with the pain,” writes Fuqua. “Sometimes the list grows weekly, sometimes daily … That’s my opioid crisis.”