Many with chronic illness denied prescriptions in fight against opioids

The symptoms came out of the blue, cropping up two years ago with agonizing abdominal pain that flared up and then, after a time, briefly subsided. The pain became worse after eating, causing nausea and vomiting as well.

Lauren Deluca, 36, of Worcester grew frantic as the flare-ups and pain persisted. She lost 20 pounds in three weeks, on an already trim frame, and missed work as an insurance specialist because of her symptoms.

“The pain level is a 10,” she said in an interview. She described the attacks as “blinding pain,” preventing her from carrying on everyday activities such as leaving her apartment, going to work and eating normal meals.

Ms. Deluca just wants the pain to stop, to be able to manage her condition and go on with her life.

But the opioid epidemic, which led to more than 2,000 overdose deaths last year in Massachusetts, has had another consequence: Patients with severe or chronic pain often can’t get the prescription painkillers they need to cope.

More than half the nearly 3,000 doctors nationwide who responded to a survey last year commissioned by The Boston Globe reported that they had cut back on prescribing opioids. Some, nearly one in 10, have stopped prescribing altogether.

“That’s a constant battle for physicians to make sure we’re finding the right balance” between relieving pain and reducing risk of addiction, said Dr. Dennis Dimitri, vice chairman of the Department of Family Medicine and Community Health at UMass Memorial Medical Center and a clinical associate professor at University of Massachusetts Medical School. Dr. Dimitri is also the chairman of the Massachusetts Medical Society’s Task Force on Opioid Therapy and Physician Communication.

Dr. Dimitri said for acute pain, usually a short course of opioids, no more than three to five days, is all that’s necessary. But for chronic pain, such as headaches, nonspecific abdominal or back pain, or fibromyalgia, the effectiveness of opioids isn’t so clear.

The U.S. Centers for Disease Control and Prevention issued guidelines on prescribing opioids for chronic pain last year, and most physicians proceed cautiously because of the risks, according to Dr. Dimitri. They are urged to try nonopioid solutions first, prescribe in small amounts and look for measurable improvement before going further down that path. But it’s “ultimately up to the physician’s judgment,” he said.

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He added, “This is a little bit of the pendulum swinging too far back to one side,” about blanket refusals to prescribe.

“My constant worry is, if I go into an attack, are they going to believe me or think that I’m a junkie?” said Ms. Deluca, who has faced repeated obstacles from physicians to get even small doses of opioids. “I feel like I’m fighting for my life right now because taking my medication away takes away my ability to live.”

Doctors initially prescribed a bland diet and antacids, including Zantac and proton pump inhibitors, to reduce the symptoms, which Ms. Deluca said quickly stopped working. They put her on a very-low-fat diet, which she monitors carefully, forcing herself to eat a small meal every two to three hours to keep the acid in her stomach low.

She was hospitalized for a week in late 2015 for an attack. Medical tests and referrals to local specialists led doctors to suspect Ms. Deluca suffered from chronic pancreatitis, an inflammation of the pancreas that does not heal and gets worse over time, leading to irreversible organ damage. During an acute attack, the enzymes created by the pancreas to digest food stay inside the pancreas, causing the organ to digest itself and resulting in debilitating pain.

Ms. Deluca wasn’t given opioids for the pain until a particularly excruciating flare-up led her to the emergency room in May, nearly two years after her painful episodes started. She received a small dose of Dilaudid (hydromorphone), a Schedule II narcotic.

But health care providers have been extremely reluctant, or refused, to provide any more. Ms. Deluca said a local gastroenterologist scolded her for going to the emergency room for her pain. Another physician she was referred to, in Boston, dismissed her complaint. “He saw me as a pill seeker,” she said.

“It’s not if I’m going to have an attack; it’s when,” Ms. Deluca said. “You want to know if you go into an attack, someone will help me.”

Last week, she saw another specialist at a different Boston hospital, who finally confirmed her chronic pancreatitis diagnosis and advised her Worcester primary care physician that she should be provided narcotic medication for breakthrough pain. She has an appointment to review her condition and enter a pain-management contract.

Last month, Ms. Deluca started an online petition on Moveon.org, “Help Chronic Pancreatitis Sufferers,” which calls for chronic pancreatitis patients to be allowed to continue to have access to narcotic pain medications. The petition had 375 signatures last week, which, along with a similar one she created earlier on the Care2 Petitions platform, totaled nearly 700 signatures.

Some who signed the petition left comments, such as a Florida woman who wrote: “Could you imagine a life that everything or anything you eat causes you to drop from pain? Or drinking a sip of water causes severe vomiting? No quality of life with this disease. Pain relief is the only way we survive day to day.”

A nurse from Iowa wrote that she had to leave her career because of the pain. “This is barbaric to not allow persons with known painful diseases pain medication,” she wrote.

Ms. Deluca has also contacted her elected representatives in Washington and on Beacon Hill to add the perspective of chronic pain patients to the opioid epidemic discussion.

Her situation is familiar to those who suffer from chronic pain from any cause.

“We’ve been inundated at MassPI from patients who can no longer get their medications,” said Cindy Steinberg of Lexington, who is national director of policy and advocacy for the U.S. Pain Foundation and chairwoman of the policy council at the Massachusetts Pain Initiative. “It’s a common story, unfortunately.”

Ms. Steinberg noted that legitimately prescribed painkillers weren’t the main source of the opioid crisis. The majority of fatal overdoses were associated with illegally obtained substances.

According to the state Department of Public Health’s most recent reports, 81 percent of opioid-related deaths in 2017, where a toxicology screen was available, were linked to illicit fentanyl. Heroin was present in approximately 39 percent of these deaths. Prescription opioids were present in approximately 15 percent of overdose deaths studied.

And according to the CDC, most people who abuse prescription opioids get them from a friend or relative. Only around a quarter of those at highest risk for prescription opioid overdose use their own prescriptions.

While concern about excessive opioid prescribing may be valid, some feel that regulatory tightening has gone beyond its intent to flag those who abuse the system.

“The rhetoric around blaming doctors has clearly intimidated them from prescribing,” Ms. Steinberg said.

Chapter 52, the 2016 state law signed by Gov. Charlie Baker to reduce opioid overdoses, includes a benchmarking provision in which practitioners who prescribe more than the average number of opioids will be sent a notice by the Department of Public Health.

“There’s a little concern that they’re going to be looked at and perhaps evaluated for prescribing habits,” Dr. Dimitri said.

A DPH spokesman said that 29,000 letters were sent in March to all prescribers in 2016 of Schedule II and III drugs, which include such drugs as oxycodone, methadone, Dilaudid and Suboxone, indicating how their volume of prescriptions ranked. The next round of notices will be sent around mid-October, and then quarterly after that.

Dr. Dimitri said that the state’s prescription monitoring program has helped to document practices that were concerning. He also noted that prescribing actually started to decrease a few years ago, before the current monitoring program was mandated, when physicians realized there was a problem.

The decline in high-risk opioid prescriptions has coincided with fewer individuals with what’s termed activity of concern. The rate of individuals who had four or more opioid prescriptions from different prescribers and filled them at four or more different pharmacies, an indicator of possible misuse, dropped to 7.7 per 1,000 residents in Massachusetts in 2016 from 14.3 per 1,000 in 2013.

Between April and June this year, the rate was even lower, at fewer than 1 per 1,000, according to DPH. The number of searches by providers on the prescription monitoring program jumped, and Schedule II prescriptions continued to decline, in the second half of 2016 when the state’s MassPAT (Massachusetts Prescription Awareness Tool) went fully into effect.

Pain should be addressed in a variety of ways, not just through medication, Dr. Dimitri and Ms. Steinberg agreed. But insurance often doesn’t cover nonmedical treatment such as physical therapy, acupuncture or meditation and relaxation training to the same extent as surgery and drugs.

“I think people with pain feel abandoned,” Ms. Steinberg said. “I would encourage them (physicians) to really partner with their patients and help them find options.”

When there are no accessible treatment options and no hope for pain relief from prescription narcotics forthcoming, some turn to heroin or other available drugs to relieve their suffering. Some consider suicide.

“If these patients cannot get the pills legally, you will be increasing dangerous street sales, or even suicide,” wrote a man from Ohio who signed Ms. Deluca’s petition.

“At most times, it makes one want to die,” added another Florida woman.

“People shouldn’t feel their only escape is to break the law or take their own life,” Ms. Deluca said. “You have to prove that you’re worth helping. It’s so wrong.”