For Dawn Gibson, pain is a constant, everyday component of life. It’s always there, “gnawing away” at her in the background, she says, but during a flare it can spike without warning. That’s what she calls breakthrough pain. “This pain is bright, sharp, and stabbing,” says Gibson, who has lived with ankylosing spondylitis (AS) since 2001. “Both types of pain divert energy and ability from my life.”
Opioid medications helped Gibson reduce her pain to a tolerable level, so that she could work full-time, exercise, garden, and live her life with a sense of normalcy – sitting through long plane trips, for example, or doing youth work at her church. “They didn’t make me high or anything like that,” says Gibson. “It was just a way to turn down the volume.”
But Gibson, like millions of chronic pain patients across the U.S., now finds it nearly impossible to get a prescription for opioid medications when she needs them. Efforts to restrict opioid usage in the wake of a surging addiction and overdose crisis – which has only intensified during the COVID-19 pandemic – have left those who live with severe pain cut off from access to necessary treatment.
According to SAA’s 2017 Life Impact Survey, some 13.8 percent of spondyloarthritis (SpA) patients interviewed had taken opioid medications, usually either hydrocodone or oxycodone. Pain is one of the foremost complications of SpA – and the SpA community is not alone. Fifty million people in the U.S. live with chronic pain every day or nearly every day, while about 20 million people have chronic pain so great that it interferes with basic life activities, according to the nonprofit National Pain Advocacy Center (NPAC). Pain is the number one cause of long-term disability, globally.
And yet, pain is not well understood by researchers or clinicians, and is often diminished or dismissed. “Pain is just not taken seriously. It has been under-researched, under-addressed in education, and subject to stigma,” says NPAC president and founder Kate Nicholson, JD.
Opioid medications, which provide effective pain management for many, have become mired in controversy due to misuse and abuse – and those who need them most end up suffering.
How did we get here? In the 1990s, healthcare providers began prescribing opioids more broadly – especially once OxyContin hit the market in 1995. The number of opioid prescriptions filled at U.S. pharmacies nearly tripled from 76 million in 1991 to 219 million in 2011.3 During that time, addictions rose and overdose deaths spiked, making media headlines. Between 1999 and 2019, nearly 500,000 people died from an overdose involving an opioid, including prescription and illicit opioids, according to the CDC.
Yet the story is more complicated than it seems. Many deaths cited in statistics involve multiple drugs or substances. Only about 1 to 8% of people taking opioids for pain become addicted to them, Nicholson says. And most people who misuse prescription opioids don’t get them directly from doctors, instead borrowing pills from family or friends, or buying them on the street. Tainted street drugs and illicit fentanyl have caused the death toll to soar, sounding a national alarm.
To stem the crisis, the CDC in 2016 released its Guideline for Prescribing Opioids for Chronic Pain, which urged providers to use caution when prescribing and to try other, less risky treatments first.1. 2 But as policymakers rushed to apply the guidance, many states passed draconian laws that severely curbed the dose and duration of opioid prescriptions in situations the CDC never intended to regulate, Nicholson says. A new web of state and federal oversight – including from the Drug Enforcement Agency (DEA) – led to a chilling effect in the medical community; doctors who drew scrutiny for their prescribing practices could receive a penalty, or even lose their license.
The effect on the chronic pain community has been devastating. Patients were suddenly told they had to taper their medications, or that they couldn’t get more than a month’s or a week’s supply at a time. Some clinicians refused to continue prescribing opioids at all. And in the worst cases, pain patients have been turned away from medical practices, or dropped from care.
Abrupt tapering of opioid medications has dangerous side-effects, studies show. Patients can become destabilized, leading to hospitalization, suicidal thoughts or actions, or seeking relief in other, more harmful substances. “Peoples’ lives can fall apart if they suddenly have no access to medications,” Nicholson says.
In 2019, the FDA released a safety warning about the detriments of forced discontinuation and tapering, and the CDC issued a statement saying its guidance had been applied too strictly.4, 5, 6 But these reversals largely have not trickled down to patients. More than 50% of doctors still won’t see new patients who take opioids for pain, according to a University of Michigan study – which represents illegal discrimination under the Americans with Disabilities Act (ADA), Nicholson notes.
“We’ve seen a huge increase in discrimination against people who require these medications,” Nicholson says. “It’s partly fear of oversight, and partly hearing in the media for years that they [doctors] were responsible for killing people, and feeling shamed and blamed. It’s easier not to deal with these patients.”
But leaving millions of people with unmanaged pain inflicts its own cost. Pain causes financial, physical, and psychological damage. Without proper treatment, those living with chronic pain may lose the ability to work, take part in their families, or perform the functions of daily life.
Nicholson knows this first-hand. She was working as a civil rights attorney for the Justice Department when nerve damage from a surgery left her bedridden and in disabling pain. “I couldn’t sit, stand, or walk for 20 years. If you cannot go to work, shower, cook a meal – the most basic life activities – that’s impeding your ability to live.”
Managing her pain with opioids, Nicholson was able to continue working as a federal prosecutor, sometimes arguing cases while reclining in a lawn chair. But in 2014 she moved cross-country and couldn’t find a new doctor willing to prescribe her medication. She had to fly back to her former city to get proper care. “That helped me see what was coming for other people in the community,” she recalls.
After Gibson could no longer obtain opioids, she was encouraged to exercise, lose weight, and use NSAIDs. But long-term NSAID use led to anemia and vitamin deficiencies that ravaged her health.
“Patients aren’t met with comprehensive approaches to their pain,” says Gibson, who is the head of NPAC’s Community Leadership Council and founder of the Twitter group Spoonie Chat. “This is unsurprising, given the poor understanding of chronic pain and cultural antipathy for people in pain. Most people don’t want to believe that an ‘innocent’ person could start hurting one day and never stop. They want to believe that patients must be to blame.”
Chronic pain disproportionately affects certain demographic groups. Up to 70 percent of chronic pain patients are women – but women are also more likely than men to have their pain dismissed, Nicholson says. People of color face even greater barriers to care; clinicians tend to rate the pain of Black and Hispanic patients lower. People of color are also more likely to be perceived as drug-seekers and denied pain medication.
“It’s isolating and painful to be seen as lazy, drug-seeking, or a bad person for being in pain,” Gibson says. “Every patient deserves respectful and dignified care.” In the meantime, she relies on over-the-counter pain treatments, nutrition, and self-care to maintain her quality of life. “It’s not enough because I need medical care that’s not available to me right now.”
Under the spotlight of the opioid addiction crisis, chronic pain patients must navigate the twin stigmas of pain and addiction. Nicholson herself says she felt self-conscious taking a medication that is considered addictive. An anonymous member of the SpA community wrote to SAA, saying, “When you take narcotics for pain relief, you are branded a criminal. You are made to justify and prove your innocence to everyone who knows – even yourself at times.”
These issues together form the crux of the problem NPAC is working to solve. Created as a policy-focused advocacy group, NPAC’s mission is to advance the health and human rights of those living with pain and address inequalities in pain treatment. “We want to shift the narrative to help people understand pain as a distinct disease process,” Nicholson says. “Unless people really understand its consequences, there’s never going to be a social will to change.”
At least 40 states, along with many major insurers and retail pharmacies, have laws or strict policies limiting opioid prescriptions. NPAC – comprised of clinicians, civil rights advocates, scientists, and members of the chronic pain community including SAA volunteers Charis Hill and Jed Finley – advocates against arbitrary limits on medication, and pushes for better pain education and access to treatments.
In April of this year, NPAC successfully fought a provision in a federal bill that would have imposed rigid three-day limits on opioid prescriptions nationwide. They have also submitted comments opposing one-size-fits-all medication limits in multiple states, including an Oregon health board’s recommendation not to cover opioids for Medicaid patients with 170 conditions of the back, neck, and spine.
NPAC board members including Nicholson were part of meetings that led to the CDC’s 2019 correction in The New England Journal of Medicine recognizing “inflexible application” of its 2016 guidelines by policymakers that endangers patients’ health and safety.
Now, Nicholson and others are part of a work group advising the CDC on a full update of those guidelines. “If the new guidelines come out and do what we hope they will do, I have hope that they will trickle down,” she says.
In the meantime, there are steps those living with chronic pain can take if they experience forced tapering or are denied care. They can file a complaint with their state medical board, the Department of Justice, or the Department of Health and Human Services. They can report their stories to NPAC, or the American Medical Association, which has an opioid taskforce. And they can advocate for themselves with their healthcare providers – although the burden to patients may be great.
“It’s a really difficult situation on an individual level – going into their doctors and saying, ‘What you’re doing is not right. The CDC says you shouldn’t be doing this,’” Nicholson says. “When people are already in pain, having to advocate for themselves is challenging.”
But NPAC and other pain organizations are working to turn the tide on three levels: policy, societal understanding, and personal acceptance. “You shouldn’t feel stigmatized,” Nicholson believes. “If these medications work for you and allow your life to continue, understand that for you they are appropriate.”
- CDC 2016 Guideline:
- About the CDC 2016 Guideline:
- NIH 2018 Report:
- CDC 2019 clarification of 2016 Guideline:
- About the CDC clarification:
- FDA warning against abrupt tapering: