“It is borderline genocide,” said DeLuca, 37. “You are allowing [chronic pain patients] to go home and essentially suffer until they kill themselves.”
Last year, Lauren DeLuca went to the emergency room in the middle of the night, violently ill and in pain with a pancreatic attack. Despite the fact that she was passing out and vomiting profusely, DeLuca said that she received little help.
“I was essentially turned away,” she told The Fix. “Everywhere [I went] I was being accused of lying, accused of making it up.”
Over the next three weeks, DeLuca lost 20 pounds, unable to eat because of her pain and vomiting. Doctors, she said, were too paralyzed by the fear of overprescribing powerful opioid pain relievers to help her. Eventually, DeLuca’s arteries and organs were permanently damaged by her inability to eat, halting her plans to start a family, and leaving her with lifelong health issues. Even after all that, she had issues accessing the opioid pain relief that would make her life bearable.
“I’m a continuous level 10 pain. If you don’t medicate me, I’m screaming,” she said.
Frustrated and desperate, DeLuca founded the Chronic Illness Advocacy and Awareness Group, first as a Facebook community and later as an advocacy organization that aims to help chronic pain patients who feel that new opioid regulations put their lives at stake.
“It is borderline genocide,” said DeLuca, 37, who lives in Massachusetts. “You are allowing them to go home and essentially suffer until they kill themselves.”
Good Intentions, Dangerous Consequences
The negative effects of opioids are widely known. Overzealous and irresponsible prescribing practices, sometimes by doctors receiving kick-backs from drug companies, are blamed for causing the opioid epidemic that has claimed more than 70,000 American lives last year alone. In an effort to reduce the number of people dying from drug overdoses, policymakers have targeted prescription opioids, issuing guidelines for prescribers and in some cases, regulating the number of pills and the dosage that can be issued to patients.
As a result, the total number of opioid prescriptions issued in America peaked in 2012 and has fallen steadily since. While policymakers praise this as a win in the fight against opioids, chronic pain patients and some medical professionals argue that the regulations have placed a burden on people who need opioids to function.
“The restrictive prescribing laws are misguided and have unintended consequences,” said Lynn R. Webster, MD, a vice president of scientific affairs for PRA Health Sciences, past president of the American Academy of Pain Medicine and the author of The Painful Truth: What Chronic Pain Is Really Like and Why It Matters to Each of Us.
It’s true, Webster said, that opioids were being over-prescribed, particularly for acute (short-term) pain. Limits on prescriptions for acute pain make sense for most patients (although not all, he said), but doctors are also being pressured through laws, recommendations, and insurance policies to taper chronic pain patients off opioid regimens that have been working for them for years.
“This is despite being compliant and not showing any signs of drug-related problems,” Webster said.
In 2016, the Centers for Disease Control and Prevention issued guidelines urging prescribers to “carefully justify a decision” to put a patient on a dose of opioids higher than 90 milligrams per day. While the CDC said it consulted experts, pain advocates say that this is a relatively arbitrary number that is devastating for patients like Krista Battrick of Washington state.
Battrick, 50, suffers from chronic nerve pain caused by complications from a dental implant. She has been on opioids for 16 years and was able to use them to keep her pain at about a 1 on scale of 10. However, following the CDC recommendations, her doctor informed her he would no longer be prescribing opioids. Battrick struggled to find a new pain doctor who would take her given her high dosage. After three months, she finally found a new doctor, but he insisted on tapering her opioid dose so quickly that she experienced withdrawal symptoms.
“I am now in pain every single day,” she said, explaining that her new normal is pain at about a 4 or 5, with breakthrough pain that occasionally keeps her confined to bed. “I am angry because I feel like the decision to make these ‘guidelines’ were made by people who have never experienced chronic pain and have never talked to anyone who has experienced chronic pain.”
Battrick isn’t the only one who is upset. Richard Lawhern, co-founder of the Alliance for the Treatment of Intractable Pain, became involved in the chronic pain community when he started caring for his wife, who has chronic facial pain. He says that backroom deals and biased anti-opioid reviews made between governing bodies, especially the CDC, led to what he calls a “draconian reduction” in the number of opioids being prescribed. In part because of what he calls “these distortions,” Lawhern has filed a formal complaint with the the Office of Inspector General (OIG) for the United States Department of Health and Human Services (HHS), accusing the CDC of fraud in forming and issuing the 2016 opioid prescription guidelines.
The Root of The Issue
Pain patient advocates say that these policies stem from a fundamental misunderstanding about prescription opioids and opioid overdose deaths. They argue that the rate of opioid prescriptions being written was never causally tied to the rate of opioid-related drug overdoses. But despite the lack of research, Lawhern said that the medical community — and then policymakers — began to treat this premise as fact.
“That point of view was never based on fact or data,” he said. “Yet it was accepted at face value by people in the medical profession who felt it to be intuitively right.”
The data, he said, show no cause and effect relationship between opioid overdose deaths and overprescribing, but the CDC has turned a blind eye.
“When you plot the rate of opioid prescribing against the rate of overdose deaths from all causes, what you get is a shotgun pattern with no trend lines,” Lawhern said. “There is no cause and effect relationship there, but the CDC has actively resisted doing the analysis and validating that reality.”
Webster agrees. “The media and policymakers clearly don’t understand that the drug problem is not from prescription opioids,” he said, pointing out that while prescription rates have dropped dramatically, overdose rates are at an all-time high.
“It is naive to think that limiting access to prescription opioids will stop abusers from abusing,” he said. “They will just go to the street, where the more dangerous drugs exist, to get what they want.”
As chronic pain patients have more trouble accessing the medications that let them live their lives, DeLuca sees more lashing out at addiction patients, blaming the behaviors of “some junkies” for affecting their ability to get pain relief. DeLuca said that she tries to stay out of the blame game.
“We shouldn’t be demonizing substance abuse either. They are human beings suffering as well, and they need treatment,” DeLuca said. “But everyone in the pain community feels we have been betrayed: that policymakers feel that people with substance abuse disorders deserve a life and we pain patients don’t.”
The Spiral of Restricting Pain Relief
Many pain patients now feel that they need to prove that they are worthy of pain medication, that they’re not making up symptoms to score a high.
Dina Stander, 56, is a lucky pain patient in that she has found a primary care doctor who helps her navigate her hereditary spine and joint condition and the pain it brings. Even still, she recently received push-back from the doctor when she asked for a refill on pain medication that she keeps on hand for emergencies.
“I had to remind him that I do not usually ask for pain meds. The last time was two years ago. …I do not abuse pain meds,” said Stander, who lives in Massachusetts. “Only then did his eyebrow settle; he remembered I am not a risk to his paperwork status with the DEA I guess.”
This skepticism is part of the reason that Stander doesn’t use opioids for day-to-day management of her condition.
“What used to be a simple request is now an interrogation,” she said. “If I was to go back on an opioid pain regimen, I would have to pee in a cup every month and contend with the stares and stigma from desk staff when I went to pick up scrips, or suspicion and scrutiny at the pharmacy.”
Pain patients get judged in part because of a widespread misconception that they could get relief from alternative treatments rather than opioids, if only they’d try.
“If you’re on a long-term opioid plan, the alternatives have been tried and failed,” DeLuca said.
Although policymakers and members of the public wouldn’t assume they have the knowledge to dictate how medical professionals treat other illnesses, they have no problem doing so when it comes to chronic pain.
“Chronic pain is a serious disease and, for many, it can be as malignant as cancer. But it is treated as if were a trivial problem, largely fabricated, so people can get drugs,” Webster said. “There appears to be little compassion for people in pain.”
In the most severe cases, access to opioids for pain relief can be a matter of life and death. DeLuca said that just this week she has had three chronic pain patients message her on Facebook expressing suicidal ideation. Nearly every source interviewed for this story emphasized the risk of suicide for pain patients who lose access to opioids.
“Some people who will not be able to find pain relief due to the new policies will just give up, and unfortunately, some will commit suicide,” Webster said. “This is not hyperbole.”
Meeting in the Middle
Just as addiction and recovery communities feel overwhelmed trying to solve the overdose crisis, pain patients can be jaded about whether their need will be heard and responded to by the medical community, especially in an environment where prescription limits get widespread praise.
However, DeLuca says there are practical actions that could make a difference. The CDC says that its guidelines that recommend limiting dosage at 90 milligrams are “not intended for patients who are in active cancer treatment, palliative care, or end-of-life care.” However, palliative care — ongoing care for life-limiting illnesses — is defined differently in each state. DeLuca and her advocacy group would like to see the United States adopt the World Health Organization’s definition of palliative care, and use that to identify patients who should be exceptions to the restrictive guidelines.
Webster says that policymakers need to remember that restricting opioid prescriptions — particularly for the sickest patients — is not the solution to the opioid epidemic.
“The country has a drug crisis, not just an opioid crisis,” he said. “Most of the harm from opioids are from the opioids being smuggled into the country from China and Mexico, but nearly all the government’s interventions are based on limiting access to pain medication for people in pain. This is terribly misguided. It doesn’t address the major drug problem. What policymakers have failed to recognize is that there are unintended consequences when the most hurting amongst us cannot find relief. This is the bigger tragedy.”