“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 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.”
Do you think everyone in the pain community has been betrayed? Find out more in the original article The Other Side of the Opioid Epidemic: Chronic Pain Patients at The Fix.