As John Nichols tries to go about his daily life, he aches and his knees and hips hurt, among other daily pains.

“It feels like someone is stabbing a knife in my neck and it’s stuck in there, and every time I move it gets stabbed,” he said, describing his daily pain level as a 7 on a scale of 1 to 10.

A few months ago, his pain was at level 3. He could still do the simple things he needs to do to live his life — mow his lawn, do his dishes or go fishing with his son. Nichols, 50, of Winslow, is one of many patients with chronic pain who fear the worst as they are weaned off their opiate medications by their doctors: the loss of quality of life.

“You think I want to lay on the couch my whole life?” Nichols said. “I’m really scared.”

Now he and thousands of others like him are bracing for the pain while the effects of a new state law take hold. The law aims to reduce the amount of medication that can be prescribed to patients, with some exceptions, as the state grapples with a growing opiate abuse epidemic. At the same time, some central Maine patients on opiate medication for chronic pain treatment say they shouldn’t be punished for others’ illegal drug use with new medication limits, and even some medical professionals fear the short-term effects of the law.

And while patients concerned about medication limits may be able to qualify for exceptions, two of the people interviewed weren’t aware of exceptions and already were being tapered off their medications by doctors. Another said there’s scant information available about how to apply and qualify.

L.D. 1646, introduced by Gov. Paul LePage during the 2016 session, is meant to prevent opiate abuse and bolster prescription monitoring to prevent people from “doctor shopping.”

Limiting prescriptions is among the most controversial aspects of the bill, called “An Act to Prevent Opiate Abuse by Strengthening the Controlled Substances Prescription Monitoring Program.” New patients are limited to a dosage amount of less than 100 morphine milligram equivalents, or MME, of opiates, and those already taking medications above the limit must taper to less than 100 MME by July 1. Medical professionals measure opiates by morphine milligram equivalents to figure out corresponding dosages of different medications.

Meanwhile, there’s a growing body of evidence that using opioid medication to treat chronic pain is worse for patients over the long term, but those already using such treatment now might have no other choice.

The Maine Medical Association worked with the LePage administration to compromise on some aspects of the bill and ensure there would be exceptions for patients who need high dosages of the medications. A number of doctors have said they understand that something needed to be done to curb the growing opiate epidemic, but some still wish measures could have been taken without legislation.

“I hate having medicine legislated,” said Steve Diaz, chief medical officer for MaineGeneral Medical Center in Augusta. “I believe as a profession we physicians should be policing ourselves and have the wherewithal to provide guidelines. But I think the issue here is the opioid epidemic was getting worse, and there was no national or state medical response to rein it in.”

However, raising awareness about the exceptions is another hurdle the association will have to jump to ensure patients, possibly like Nichols, can get the help they need.

The legislation also limits the amount of opiates that can be prescribed for daily use as well how much can be supplied within a certain period. A patient can’t be prescribed more than a 30-day supply of opioids for chronic pain treatment, or a seven-day supply for acute pain treatment. It also requires prescribers who have the capability to prescribe all opiates electronically to do so.

The Prescription Monitoring Program will require prescribers to check prescription monitoring information for a patient’s records at the initial time of prescribing an opioid and every 90 days afterward, unless it is in a hospital or facility setting. Prescribers also must complete three hours of education on opioid medication prescribing every two years.

About 16,000 patients in Maine are prescribed more than 100 morphine milligram equivalents, according to Gordon Smith, executive vice president of the Maine Medical Association. About 1,300 Maine patients are prescribed more than 300 MME.

“Even at 200 morphine milligram equivalents, you have a 1 in 32 chance of dying within the next two-and-a-half years,” Smith said. “That’s a mortality rate that’s very, very high.”

According to the state attorney general’s office, Maine had 286 drug overdose deaths in 2016 through Sept. 30, exceeding the 272 deaths in all of 2015. Most of those deaths were fueled by the opioid epidemic.

MAKING EXCEPTIONS

The Maine Medical Association, a statewide organization aimed at supporting Maine physicians as well as the health of the state’s citizens, ultimately backed L.D. 1646 after the LePage administration agreed to lengthen the maximum supply for prescriptions. A number of exceptions also are included in the legislation.

Smith, the association’s executive vice president, said he thinks there are enough exceptions to account for nearly every patient’s situation.

Physicians can prescribe opioid medication above the new legal limit for pain related to cancer treatment, end-of-life care, treatment for substance abuse and palliative care. Palliative care, as defined by state law, is patient-centered care that aims to optimize quality of life by anticipating and treating “suffering caused by a medical illness or physical injury or condition.”

Patients suffering from chronic pain, such as those who talked with the Morning Sentinel, most likely could qualify for the palliative exception, but it’s unclear how they would go about qualifying for it. Nichols said his doctor hasn’t talked with him about finding a way to keep his normal dosages, and it’s unclear if patients would be able to qualify for an exception without a doctor’s cooperation or effort.

Kate Carll, 60, of Hallowell, was taking up to 1,200 morphine milligram equivalents of methadone in one day after a back surgery eight years ago and other injuries left her with severe, chronic pain in her back, legs and feet. Her doctor, James Wilson at MaineGeneral Physiatry, now has switched her to a different opiate painkiller, oxymorphone, and lowered her dosage to 20 milligrams, or 60 MME, per day. A MaineGeneral spokeswoman said the health care system would not be able to discuss individual patients, even with that patient’s permission.

“I can’t be on more than 20 milligrams a day — that’s breakfast food,” Carll said. “I understand the law. I totally understand what they were trying to do, but it’s going to make it worse. I’m going to end up in a nursing home, and as a result, they’re spending more money on me.”

Because her new dose is not strong enough, Carll said, she has had increasing difficulty walking. She now uses a cane and has a hunch in her back. She doesn’t think she would ever look to street drugs to help with the discomfort, but worries she’ll eventually be confined to a wheelchair and a nursing home.

So Carll did some research and found the palliative care exception, she said, determining that she could qualify, and her doctor agreed to work with her to get the exception.

“That was not offered to me; that was because I dug,” she said.

However, she said it’s not clear yet what the process will be. Carll will get the paperwork to start the process and sign a contract, and at the end her doctor will be able to prescribe her medication up to a “therapeutic level,” though she said that probably won’t be at the level she was at before. Carll also said she’s afraid a lot of people with chronic pain will “fall through the cracks” and either won’t realize there’s an exception or won’t be offered a chance to use it.

Samantha Edwards, spokeswoman for the Department of Health and Human Services, did not respond to multiple requests for comment on the law and the palliative care exception.

Smith, from the Maine Medical Association, said paperwork shouldn’t be involved for those who qualify for the exception. However, he also acknowledged that it’s been difficult to raise awareness about the exceptions, even in the medical community.

“One would hope that the providers and the patients work together,” Smith said. If not, there is the option of going to a different provider, but he acknowledged that “very few people in the current environment are very enthusiastic” about patients with severe chronic pain.

The new law won’t be enforced until a much later date, he said. For the prescription monitoring component, enforcement will begin March 1. The state will begin enforcing opioid limits as late as October.

This gives patients, their families and prescribers the opportunity to attend public hearings and argue for more exceptions.

Diaz, the chief medical officer for MaineGeneral, said the new law has the potential to help because it gives doctors a way to talk with patients about alternatives. However, he said the bill could become a “double-edged sword.”

“If we can become compliant, the number of deaths from opiates should decrease,” Diaz said, but patients also could have trouble tapering their opioid usage and turn instead to street drugs such as heroin to ease the pain.

PATIENT PAIN

Nichols, the Winslow patient, broke his neck in an accident when he was 25. He had surgery 15 years ago to have four discs taken out, but the operation wasn’t done correctly, he said, and the screws in his neck were broken.

The failed operation is what started the horrible pain Nichols still is dealing with, and it’s what started his years of opioid use.

A doctor in Augusta first prescribed him four 15-milligram morphine pills each day, along with four 10-milligram methadone pills. That combination has a morphine milligram equivalent of 380 milligrams.

“I was doing great,” he said. His pain level was at a 3.

Then Nichols’ doctor quit, and his new doctor took him off the morphine medication, he said, and is tapering him off the methadone pills, without much of an explanation.

He’s now down to 3.5 10-milligram methadone pills per day, which has a morphine equivalent of 280 milligrams.

Nichols is among several patients in central Maine who fear effect of the new law.

Jeff Miller, 54, of Albion, said he started taking methadone about five years ago.

Miller was in a snowmobile accident in 1997, breaking his left ankle, hip, elbow, heel, both his scapulae and his nose. The accident also broke six of his ribs and compressed some of his vertebrae. At first he was prescribed Percocet for the pain. He never wanted to start taking methadone, but it was recommended because of its longer release time, he said.

Miller was taking nine 10-milligram methadone pills per day in the late summer, which equals 1,080-milligram morphine equivalents, and now has been tapered to less than five 10-milligram pills per day.

Now he’s afraid he’ll return to the same level of pain he had after the accident.

“I’m going to start back where I was, and I’m going to have a craving for this stuff,” Miller said. “What are we going do?”

Both Miller and Nichols worry that as their medication is lowered to comply with the new legislation, they’ll be forced to go out on the street to get something to help the pain.

“I understand that there’s a heroin epidemic, but it has nothing to do with us decent people who are in pain,” Miller said. “They don’t have an epidemic yet.”

Smith, of the Maine Medical Association, said that “help is coming” for those who are tapering off. Nurse practitioners and physician assistants can prescribe suboxone, a narcotic that is used to treat addiction to pain relievers, beginning in February. The Maine Department of Health and Human Services also announced $2.4 million in funding used to create 359 additional medication-assisted treatment slots across the state that began Jan. 1. The department plans to provide more slots in the Down East and western areas of the state.

NOT THE BEST FORM OF TREATMENT

While the use of opioid medication for chronic pain may be common, it’s not necessarily the best form of treatment. A growing body of evidence shows that long-term opioid use actually worsens chronic pain, as well as depression, ability to function and overall quality of life, said Dr. Stephen Hull, director of medical pain management at the Mercy Pain Center in Portland.

As a pain doctor, Hull was a regular prescriber of high dose opioids until he became increasingly dissatisfied with the outcomes he was observing in his patients. When he attended a conference on the effectiveness of opioids held by the federal Food and Drug Administration and Centers for Disease Control and Prevention, Hull was confronted by an array of studies showing that chronic opioid patients routinely reported worse pain and more diminished ability to function than patients who did not take opioids. Patients on higher opioid dosages also reported worse symptoms than those on lower dosages. Those results make sense when you look at how opioids affect the body, Hull said.

“They work very well for dampening down activity of the nervous system in relationship to pain,” Hull said. But the drugs also activate the immune system within the brain and spinal cord, making the brain more sensitive to pain. So although opioid patients experience short-term pain relief, the activation of the immune system results in even higher pain levels as the drug leaves the bloodstream. At the same time, as patients build up tolerance to the drugs, they require higher and higher dosages to feel the positive effects and stave off the heightened pain levels that come with withdrawal.

Hull said since he moved away from prescribing opioids he is seeing better outcomes for his patients.

“What we’ve seen at the Mercy Pain Center is that those folks who are willing to come off these medicines succeed at high rates and report not only that their pain is better but that their cognitive functioning is much better,” Hull said. “We’ve come to feel that not only is it appropriate to get under that 100 milligram equivalents of morphine, we are telling our patients that it’s appropriate to get them off opioids altogether.”

Even with these observations, Hull said he plans to testify in coming months in favor of exemptions for patients who are unsuccessful in their efforts to get off opioids. Long-term opioid use alters the structure of the brain in ways that sometimes might be irreversible, Hull said. Even in studies of patients who wanted to kick the drugs, 10 percent to 12 percent were unable to do so.

“The 10 to 12 percent may have the misfortune of having persistent changes to their brains that’s going to make them lifelong dependents on opioids,” Hull said. “To be compassionate we need to have some exceptions for patients who at the very least have made a concerted effort of getting off opioids.”

In practice, Hull expects that patients who are less open to getting off the drugs will be less successful in their attempts, increasing the number of patients who might qualify for the exemption.

Dr. Kristen Silvia, a family physician at Maine Medical Partners in the Scarborough Family Medicine Office, also expressed concern about the addictive nature of opioids. Up to one-third of patients can get addicted to the drugs, which often comes with side effects such as nausea or constipation. They also can have long-term health effects on cognitive function, Silvia said.

“We have been taught that opioid medications were good,” Silvia said. “We’re a victim of the drug companies who said they were safe.”

Within her own practice, Silvia has tapered most of her patients off opioids, she said. To treat chronic pain, she takes a more “patient-centered, comprehensive” approach, looking at the patient’s mental health, diet and sleep habits in addition to his or her physical state.

Silvia echoed a frustration with health insurers as well, saying that there are often limits to what they will cover, which can prohibit patients from trying alternatives, such as physical therapy or acupuncture.

“We, as a medical community, need to advocate more for our patients and get some of these alternative treatments better reimbursed,” she said.

One of Silvia’s patients, Noreen Alton-Jones, 60, of Standish, uses opioid medication for intense pain from sciatica, which runs along the sciatic nerve. Alton-Jones was prescribed 150 pills per month — and took up to 10 of those 5-milligram oxycodones with acetaminophen per day, which is about a 75-milligram morphine equivalent, for about eight months.

“My pain tolerance is pretty high,” Alton-Jones said. “Oxycodone was the only thing that would keep (the pain down) so I could actually get up and move around.”

But she’s tapered down her medications, from getting 150 pills each month to 20. The tapering sometimes gives her what she called the “heebie-jeebies,” a jittery feeling. She takes tizanidine, a muscle relaxant, when that happens.

Alton-Jones attributes much of her success in tapering to her doctors, whom she said she was “lucky” to find.

“You’re always going to be in pain, and a lot of people can’t handle that, you know? It’s like having a dull toothache,” Alton-Jones said. “I wanted to get off them, and maybe that makes a difference.”

Staff writers Charles Eichacker and Kate McCormick contributed reporting.

 

Madeline St. Amour — 861-9239

mstamour@centralmaine.com

Twitter: @madelinestamour