The Chronic Illness Advocacy & Awareness Group (CIAAG) envisions a world where those with disabilities and chronic illnesses are guaranteed palliative care and access to prescription life sustaining medications without stigma, fear or push-back, particularly from the medical community
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July 2019

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  • The national epidemic has triggered a widespread government crackdown on doctors and patients. It has also created an emergency situation for chronic-pain sufferers who use the drugs responsibly.
Lauren Deluca couldn’t get opioid medication for a painful case of pancreatitis—not because she was addicted but because of a new set of rules about prescriptions.
L DeLuca
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  • Lauren Deluca couldn’t get opioid medication for a painful case of pancreatitis—not because she was addicted but because of a new set of rules about prescriptions.

    Lauren Deluca had never thought much about her pancreas until it attacked her. One day in 2015, she felt searing abdominal pain that worsened when she ate. “It was like the scene in Alien,” she recalls—the one where an extraterrestrial creature erupts from a space traveler’s abdomen. The flare-ups were worst after meals, when they sometimes also included nausea and vomiting. Her doctors were initially stumped in their efforts to diagnose the otherwise healthy 35-year-old, even as her pain worsened. She made repeated trips to the emergency room, where she engaged a series of doctors in an attempt to understand what was wrong and to secure prescription opioids to help her cope.
Unfortunately for Deluca, her quest bore the marks of doctor shopping, a term for the way in which people addicted to opioids accumulate overlapping prescriptions to feed their cravings. Deluca says she was doing nothing of the sort but feels she was blackballed in her pursuit of treatments—of any kind—that would help her survive her workdays as a business insurance broker in Worcester, MA.

She was eventually diagnosed with chronic pancreatitis, in which the organ repeatedly becomes inflamed and sustains irreversible damage during acute attacks. As the disease ran its course, she lost 11% of her pancreatic function, vital for digestion, and dropped 20 lb from an already lean frame. She’s 37 now but says she feels older: Pain wears the body down.

In the past few years, the United States has grappled with the widespread use of opioids, a class of drugs that includes prescription oxycodone (Oxycontin) and hydrocodone with acetaminophen (Vicodin), as well as illegal versions like heroin.

In 2015 alone, nearly 92 million people in the US—both prescription drug users and illegal users—took opioids for various ailments, for both short and long periods. About 13 million of these people misused them—by obtaining and taking them illegally or by taking prescribed drugs they no longer needed—accord-ing to a report published in the Annals of Internal Medicine.

As the opioid crisis has mushroomed, these users typically seek out the drugs on the street or switch to illegal drugs like heroin and fentanyl when their access to a prescription ends. This has led to fatal overdoses in numbers that keep ticking alarmingly upward: The Centers for Disease Control and Prevention tallied more than 200,000 fatal overdoses between 1999 and 2016; there were another 42,000 in 2016 alone, and the numbers were still rising in 2017. As a result, federal and state governments have cracked down on the drugs’ availability, often by restricting the quantities doctors can prescribe.

The new policies are choking off access to the medications for some of the 87.5 million chronic-pain patients who take them according to their prescriptions and don’t misuse them. Like Deluca, these people rely on regular access to often-modest doses of the medications to live productive lives. The “solution” to the opioid crisis—making the drugs scarcer—has, in effect, created a new kind of medical emergency, leaving people cut off from necessary medicine and cast under a cloud of suspicion.

Terri Lewis is a clinical specialist in rehabilitation and mental health in Tennessee, a hotbed of opioid overdoses, who advocates for chronic-pain patients trying to find treatment and medication support. Lewis is also a prominent expert on patient abandonment, in which chronic-pain patients lose access to doctors concerned about running afoul of government-mandated restrictions. “It is a catastrophic situation,” she says. “People are being cut off cold turkey by their doctors. They have no health care, they have no physician, and they have nowhere to go.”

That includes Deluca, whose home state imposed strict regulations on opioid prescriptions the year before she suffered her first pancreatic attack. She wasn’t about to try to buy them illegally. She finally received medication from a doctor last December, but the dosage is too low, and she’s still struggling to recover from the damage sustained when she was denied care. Now she manages the best she can—and has become an advocate for change.

Cathy Kean has compiled personal histories of patients who committed suicide after being denied medication for chronic pain.

Until the early 1990s, pain was barely recognized as a symptom and, hence, largely ignored—at least by doctors. Patients didn’t have that luxury. They enrolled in the “bite on a stick” school of pain remediation, says Mary Lynn McPherson, a professor of palliative care at the University of Maryland.

Then, in the 1990s, the pain-treatment pendulum swung in favor of drug interventions with the advent of powerful synthetic medications such as Oxycontin. These new drugs gave patients levels of relief they had not experienced previously. Urged along by “education” programs sponsored by the pharmaceutical industry, primary care physicians began prescribing them in greater quantities.

What doctors didn’t necessarily account for: Pain comes in many forms. There is acute pain, the kind you feel when you break a bone. Strong drugs can blunt the effects of that sort of trauma. Then there’s chronic pain, which can result from a wrenched back, a botched surgery, a degenerative condition—and which delivers such a payload of hurt that it can rewire the body’s nervous system. The American Chronic Pain Association lists more than 120 maladies that can cause persistent pain, without counting the likes of sports injuries or dental abscesses. Chronic pain affects more than 100 million adults, according to the National Academy of Sciences.

Sometimes, even after the injury or disease heals, the agony continues. And when the pain lasts, the drugs often have to, too—which is not ideal when the most-prescribed medicines also hold a grave risk of addiction. Patients in these situations can safely take carefully calibrated doses of opioids at levels that don’t trigger addiction for decades, says Richard W. Rosenquist, chair of pain management at Cleveland Clinic. People’s reactions to the drugs are unique to them. Those who have constant, chronic pain take medication more frequently just to get through their days, and these patients are more likely to develop a tolerance and need higher doses. Others take low-strength doses only when they expect flare-ups. The key is to match the dosage to the patient.

But when the new category of opioids came out, some doctors prescribed them in large quantities to sufferers of all kinds of pain. Pharmaceutical companies marketed them aggressively and played down the risk of addiction, according to the American Journal of Public Health. For a broken bone, opioids are meant to provide short-term help, says Sameer Awsare, an internist at Kaiser Permanente Santa Clara Medical Center in California. “If it will hurt for only 2 or 3 days, you should get 10 pills, not 200 pills, which is what ended up happening,” he says. “People got addicted and took more.”

That’s how a limited, but effective, medicine became a scourge. The United States makes up 4.6% of the world’s population; 80% of all opioids are consumed here, including 99% of the hydrocodone, says Awsare.

As the number of overdoses grew, all 50 states launched legislative assaults on the problem, including seven that declared public health emergencies. (Massachusetts was the first, in 2014.) They mandated rollbacks in the number and duration of opioid prescriptions, established registries of users, began monitoring pharmacies, and closely watched and placed restrictions on doctors who were prescribing the drugs. In addition to doctor shopping, the term pill mill (a clinic that is loose with prescriptions) entered the lexicon. Last August, President Donald Trump declared the opioid crisis a national emergency, pledging funds and extra enforcement (with no tangible results to date beyond the measures already in place).

Predictably, opioids taken under any circumstance were swept up in the panic around illegal use. According to the CDC, 40 million fewer opioid prescriptions were written in 2016 than 2 years earlier, the lowest rate in more than a decade. But opioid-related deaths continue to soar, largely because of an influx of street drugs that have effects that are similar to those of the medication. And the pressure on doctors to curb prescriptions remains intense. “When you’re a prescriber and the Drug Enforcement Administration is breathing over your shoulder,” says the University of Maryland’s McPherson, “you think, Uh-huh, this is what I have to do.”

As a result of the crackdown, fewer doctors will even take a pain patient’s appointment. Steven Wright, a physician who is also vice president of the Colorado Pain Society, quit seeing patients 3 years ago. “I was becoming an administrator of a drug-reduction plan rather than a clinician making decisions about the best thing for the patient,” he says.

This confluence of events leaves people like Zoe Haigh in a significant bind. Haigh, 44, of Danville, CA, suffered a congenital hip dislocation as an infant that wasn’t discovered until she was 3 years old. She experiences “bone rubbing on bone” whenever she moves and has taken opioids for everyday pain since she was a child. She also takes hydromorphone (Dilaudid) and extended-release morphine (Kadian) when she’s going to be active and fentanyl lozenges when she’s in agony.

The opioid crisis has turned her into a suspected addict, she says. Bowing to new restrictions, her doctor cut off her prescription last November, Haigh says. Making things worse, she felt a social stigma on top of her pain. “I was made to feel ashamed and a pariah for following my doctor’s orders,” she says.

Pain sufferers who can’t get medication face the prospect of leading diminished lives. Barbara Obstgarten, 69, an avid crafter from Long Island, NY, had a 2008 kneereplacement surgery that she says “went horribly wrong.” Her doctor went on vacation after the operation, and her rehabilitation was unsupervised. She never recovered full use of her knee, and the pain has persisted ever since.

Zoe Haigh has dealt with a hip dislocation since she was a young child. Her doctor-monitored opioid prescription to deal with the pain is now threatened.

She takes hydrocodone with acetaminophen (Norco) and tramadol to get through the Christmas craft fair season and to handle flare-ups. “The day is going to come when some of my doctors will not give them to me,” she says. “I’ve already had one internist, whom I had a good relationship with for 30 years, tell me he won’t give me a prescription.”

For many, the prospect of being cut off triggers despair. Wright, of the Colorado Pain Society, cites a survey of 3,400 pain patients, doctors, and other health care providers by the International Pain Foundation. Since the CDC guidelines for opioid dosing came out, 84% of US patients surveyed said they were experiencing more pain, and 42% admitted they were considering suicide due to their predicament.

It’s no idle threat. Cathy Kean is a California pain patient and advocate who maintains a database of fellow sufferers who have taken their own lives. Her list—with references and personal histories—has 17 names. “I am fighting for my life,” Kean says. “But more than that, I’m fighting for the veteran who has a gun to his head because he’s in so much pain and feels nobody cares or will listen.”

Advocates like McPherson, of the University of Maryland, believe that health care providers, including physicians, need to be skilled in pain management so they can minimize the risks. As Kristen Silvia, a rehabilitative specialist at the Maine Medical Partners in Portland, points out, there is ample evidence that asking questions about childhood trauma and family history of drug and alcohol abuse can help identify potential misusers. That could leave most patients, who are at less risk, free to access drugs that help them. And more research is needed to identify the best method for weaning patients off opioids, which currently isn’t well understood.

Kean and others are calling for federal and state governments to adopt more-nuanced policies and studies on the effects of opioids. Lauren Deluca, the pancreatitis patient, has formed a national nonprofit—the Chronic Illness Advocacy and Awareness Group (—and taken lobbying trips to Washington, DC, to advocate for people like her. Her organization is pushing for the creation of “intractable pain” cards, similar to ones now issued for medical marijuana, that document the need for opioids. Says Deluca: “We are looking to put our medical care back into the hands of qualified physicians and get the DEA and Department of Justice out of our doctors’ offices.”

Stefan Kertesz, an addiction scholar and general internist at the University of Alabama at Birmingham, recently spearheaded a petition submitted to the National Committee for Quality Assurance, the nation’s top health care accreditation organization, signed by 80 practitioners concerned about harm the restrictions are causing their patients. The petition asks the NCQA to avoid taking action that would push doctors to prescribe lower doses to stable patients. Last June, Kertesz presented a talk urging the CDC to clarify guidelines that have been widely misapplied, resulting in reduced dosages for all patients. Some regulators have told him they’re aware of these issues, Kertesz says.

For people who are in pain every day, a new way of handling the opioid epidemic—one with greater nuance that accommodates people with genuine needs—can’t come soon enough.

RESEARCHERS NOTE: that more studies are needed to know how best to wean patients off opioids. The journal Practical Pain Management points out that the best candidate has “good coping skills; uses other therapies to help cope with pain, such as exercise, relaxation, and meditation; and…has good social support.” People who fit these criteria, according to the American Chronic Pain Association, should try:

Exercise. Numerous studies show that exercise can improve range of motion and flexibility and reduce discomfort. One study published in the Annals of Rheumatic Diseases showed a 22% drop in reported osteoarthritis pain after 6 months of quadriceps exercise.

Cognitive-behavioral therapy. Pain can make you feel helpless and dependent on pills for an “easy” solution. But a range of behaviors (smoking, weight gain) and psychological conditions (depression, dependency) can be modified with talk therapy that tackles root causes. Three decades of clinical trials support the efficacy of this approach, according to the journal American Psychologist.

Alternative treatments. Richard W. Rosenquist of Cleveland Clinic says that a range of psychological conditions—depression, anxiety, even a difficult childhood—can influence pain. Hence the success of yoga, tai chi, and meditation in treating it. All are backed by recent studies, and 5,000-year histories, that demonstrate their efficacy.

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OPIOIDS HAVE plenty of downsides—constipation, mental fog, risk of addiction and death. But millions of chronic-pain patients need them. How do doctors correctly prescribe the drugs?

Mary Lynn McPherson, a professor of palliative care at the University of Maryland, says patients should establish a strong relationship with their caregivers. “Have one pharmacist and one physician/pain specialist,” she says. Then, that doctor can turn to a 23-point set of guidelines for prescribing opioids issued by the American Society of Interventional Pain Physicians in 2017. The document illuminates what everyone involved should expect. Some key points:

+ Patients should undergo a comprehensive assessment of their medical history, psychiatric status, and substance abuse history to gauge how they’ll fare on the medication.

+ Doctors should use a monitoring program and urine testing to track how well a person is adhering to the regimen and whether the drugs are being abused.

+ Treatment goals should aim for functional improvement in whatever is being treated.

+ Doctors who prescribe opioids should start with a low-dose, short-acting drug and be educated on the efficacy, adverse effects, and limitations of long-term use. High doses of long-acting meds should be given only in cases of severe, intractable pain.


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