Sept. 9, 2018 – AAS — By Mary Huber —- For many chronic pain patients, the day doesn’t start until the afternoon. They say their joints are especially stiff in the morning. It takes a couple of hours of movement and stretching to feel even close to how healthy folks feel when their feet hit the floor.
Sonya Gibson said she doesn’t schedule anything before noon. She usually gets in a few good horn’s folding laundry and cleaning the house before she has to lie down again at about 5 p.m. She said she can’t sing or perform the way she used to, before the two car crashes that wrecked her pelvis and spine and permanently altered her life. “If I do too much, my back becomes unbearable,” she said. Things have gotten even worse this year, since Gibson went off her opioid pain medication. She’s no longer willing to battle doctors over increasingly lower doses of the drugs because of restrictions amid the opioid crisis.
“The doctor lowered my dose so much that I wasn’t getting relief. I was just physically dependent,” she said. “Right now, I feel completely abandoned.” Many patients with legitimate pain say they are being unfairly targeted by sweeping legislation meant to curb prescription opioid abuse.
Those in chronic pain can suffer from numerous ailments, including arthritis, musculoskeletal disorders, degenerative disc disease, peripheral neuropathy, multiple sclerosis and kidney disease. They require pain medication to live normal lives.
Hundreds plan to protest Sept. 18 across the country to draw attention to neglect they say they face because of new regulations. The Don’t Punish the Pain Rally in Austin is planned from 11 a.m. to 1 p.m. at City Hall.
But in online forums and personal interviews, some describe an atmosphere of shame, embarrassment and suspicion at doctors’ offices – where many are forced to undergo urine tests that screen for illegal drugs – and say they feel undue stress from being cast as opioid addicts on top of their insurmountable pain.
A host of new restrictions put in place over the past decade also have made it more difficult to obtain these drugs, including limits on how many doctors can prescribe opioids to a patient, how many milligrams are allowed and how much a pharmacy can fill. The goal has been to cut the number of opioid medications being dispensed as an increasing number of people have become hooked on the drugs. Thousands have died from taking them.
Nearly 12 million people in the U.S. misuse opioid medication, according to the Substance Abuse and Mental Health Services Administration. At the same time, more than 25 million Americans suffer with daily pain, studies find.
“The issue that we are left with now is that we have a whole generation of patients really who have been offered and prescribed opioids… and are now caught in the middle of what is essentially a very large, somewhat heavy-handed policy and practice shift in the use of opioids for chronic pain,” addiction specialist Carlos Tirado said.
A recent study of more than 1,000 pain patients with 300 varying conditions found that 68 percent used more alcohol and tobacco to treat their pain and 28 percent had contemplated suicide. The Alliance for the Treatment of Intractable Pain, a nonprofit that advocates for pain patients, tracked 98 people who killed themselves after cutbacks in opioid medication or denied prescriptions.
Last year, Meredith Lawrence scattered her husband Jay’s ashes near the Delaware River in New Jersey where he used to play as a kid, a month after he shot himself near the couple’s Tennessee home. The 58-year-old had broken his back in a tractor-trailer crash in the 1980s and decided against surgery then because he was young and strong. He started having problems years later and underwent two fusion surgeries in his neck and back and was placed on a morphine pump to treat his chronic pain.
On good days, he would walk the dogs and do chores. On bad days, he couldn’t move from the couch. “It really impacted him mentally,” said Lawrence, who stood by her husband through years of doctors’ appointments and procedures. “He went through a lot of the depression that anyone with a chronic illness goes through.”
Lawrence said her husband had finally gotten to a place where he was functional on opioid medication when doctors in 2017 told him they were going to cut his dose by 75 percent because of new U.S. Centers for Disease Control and Prevention guidelines.
“You could see it on his face, he just panicked,” she said. “We were not even back in the car, and Jay said to me, ‘This is not going to work. And I’m not going to do it.’ ” A month later, he killed himself.
The guidelines doctors were referencing in Jay Lawrence’s case were put out by the CDC in 2016 to curb unintentional overdoses and recommend prescribers limit opioid doses to a max of 90 milligram morphine equivalents, equal to two 30 mg Oxycodone pills per day.
That’s not a small dose, said Wesley Foreman, a pain doctor in Austin. But for many who have been on the drugs for years and built up a tolerance to the medication, it doesn’t feel like much.
“People could be very functional at 100 mg of morphine,” Foreman said. The guidelines are merely recommendations – they aren’t mandated by law – but many prescribers have chosen to adopt them. These and other regulations have led to a widespread cut in the amount of opioid drugs being prescribed.
In Travis County, the number of opioid prescriptions has dropped 27 percent in a span of 10 years, from 69.8 prescriptions per 100 people in 2006 to 51.2 prescriptions per 100 people in 2016, CDC data shows. This accounts for people who have multiple opioid prescriptions, said Dr. Philip Huang, the city of Austin’s medical director and health authority.
However, cutting prescriptions hasn’t translated to a drop in fatal opioid overdoses. While the opioid prescribing rate in Travis County hit an all time low in 2016, fatal opioid overdoses that year were at an all-time high, the data shows.
Pain patients point to these numbers to show why doctors and pharmacists shouldn’t be the ones targeted in the opioid crisis – instead the focus should be on illegal street drugs, namely fentanyl, a potent opioid about 50 times stronger than heroin that’s smuggled into the U.S. from China. That drug has contributed to an increasing number of fatal overdoses nationwide.
The latest CDC numbers show the sharpest rise in overdose deaths in 2017 were from synthetic opioids like fentanyl. “The toxicity death we are seeing from your standard pain patients are not frankly on the rise,” Tirado said.
Death certificates in Texas often don’t include drug toxicity information, so it’s hard to gauge exactly how people are dying. If opioids are listed as a contributing factor, the information isn’t teased out to show what kind – whether it was heroin, fentanyl or prescription drugs, and if it was prescription drugs, whether they were legally prescribed or illegally manufactured, like many pain pills are today.
As opioid overdoses in Texas continue to rise, state lawmakers have begun to look at the crisis and substance use in general as they craft new bills for the legislative session that starts in January. At a public hearing in Austin in August, many pain patients told legislators they are concerned about possible mandates that would force doctors to cut their opioid doses, like laws already passed in California and Maine.
Kristin, who did not want to use her last name out of fear of retaliation, has suffered for 20 years from a rare, incurable condition called interstitial cystitis/bladder pain syndrome, or IC/BPS. She said the pain feels like knives are cutting into her bladder. The opioid medication she takes has allowed her to work, marry and raise a family.
Any action legislators take could change all that, she said. “The law you write will basically decide if I can keep my life or if I have to spend the next 40 years basically disabled in a bathroom,” she testified to a House select committee Aug. 8. “So I am asking, when you write new law, remember the lives lost to the drug trade, and please also remember me.”
Texas lawmakers have said they have no plans to regulate how much opioid medication chronic pain patients can take. “The focus of our work has been on trying to understand the issue and the related issues that surround addiction and bad prescribing practices, bad doctor practices and bad patient practices, because they are out there,” Rep. Four Price, R-Amarillo, chair of the House opioid committee, said at the hearing. “It seems like not a day goes by that somebody doesn’t say, ‘Don’t take away our medication.’ That’s really not the focus of this committee.”
But Medicaid patients in Texas are already being hit by the CDC guidelines. By January, anyone receiving the government health care assistance won’t be able to get more than the 90 milligram morphine equivalent recommended after the Texas Health and Human Services Commission limited insurance reimbursements to anything within that amount.
Medicare is following suit, as well as private insurance companies like United Healthcare and Aetna, which require prior authorization for higher doses.
Pain doctors say, regardless of mandates, they feel pressured into complying with CDC guidelines, fearing malpractice lawsuits and punishment from the Drug Enforcement Administration. Many are leaving their practices or won’t take new patients. Several have gotten letters from insurance companies warning them of excessive prescribing.
“No one wants to be the outlier, so to say,” Foreman said. “No one wants to be writing a lot of medication when this becomes a sweep.” Foreman said this has led to a cookie-cutter, onesize-fits-all approach to treating pain that adheres to dosage limits that aren’t effective for everyone. “Care should be individualized to patients,” he said. “We do a disservice if (this) is how we are treating them: ‘Everyone gets two of these, one of these and therapy.’ ” Doctors say they rarely rely on pain medication as a first option and agree with the CDC that opioids are not the most effective way to treat chronic pain. They prefer a more multi modal approach, which employs exercise like yoga and alternative treatments like acupuncture, as well as non-opioid medications like Gabapentin and Lyrica, which are used to treat nerve pain.
“There are tons of other treatment options… but we are significantly limited in that simply by what the options of what insurance can pay for,” Foreman said. “It is much easier to get opiates covered.”
Insurance companies don’t always pay for alternative treatments and often charge higher copays for non-opioid medications. Some insurers require patients to try cheaper drugs first before they will pay for the more costly options. United Healthcare lists the opioid medication morphine as a Tier 1 drug, meaning it is among the cheapest and easiest to obtain. The non-opioid Lyrica and Suboxone, a medication used to treat opioid addiction, are Tier 4, the most expensive.
“They want to take away everything, but they don’t want to pay for the things that would help you,” said Sandi Daniels, who suffers from degenerative disc problems and rheumatoid arthritis. “It’s ripping it out from under you. No one is offering any help. Insurance doesn’t want to pay for it.”
But Dr. Dan Knecht, vice president of clinical strategy for Aetna, said a lot of non-opioid options are available and members and doctors simply don’t know it. Aetna’s effort to crack down on the opioid epidemic includes a goal to increase access for pain patients to non-opioid alternatives by 50 percent by 2022.
“The epidemic is like a balloon, if you squeeze only one part of the balloon, it reshapes,” Knecht said. “We need to have a real comprehensive strategy that addresses all pieces of the epidemic, including those struggling with chronic pain.”
Gibson recently started taking kratom, a substance derived from an evergreen plant native to Southeast Asia, to treat her pain. It’s better than nothing, she said, and after years of undergoing costly surgeries, she’s at the end of her rope. “I have done countless injections, to the point where I feel more damaged,” she said.
Dr. Daniel Crowe said physicians for a long time relied on steroid injections or surgery to treat issues like low back pain, the No. 1 cause of chronic pain in the United States, without getting to the root of the problem.
“Unfortunately, all the clinical evidence doesn’t really support that as a long-term beneficial approach to managing chronic pain,” he said. “People get into these kinds of traps where they keep going in for procedure after procedure, and they don’t show improvement.”
Crowe advocates for treating the whole person, including underlying pain factors like stress and psychological trauma. He also believes in a shared savings model for health care, which rewards patients who show successful outcomes, rather than simply paying for temporary interventions.
“We are starting to see the tides turning,” Crowe said. “The opioid crisis is really focusing down on it. Unfortunately, we see these unintended consequences. When your primary care doctor says, ‘I am not going to prescribe opioids for you anymore,’ that’s going to turn into a nightmare.”
Julia Heath said when she was taken off all her painkillers, her husband had to push her through the hospital in a wheelchair because she couldn’t walk. On a normal day with opioids, she still feels a constant burning under her skin and widespread body aches, which her doctors diagnosed 20 years ago as fibromyalgia.
She had taken a painkiller once that relieved nearly all her symptoms. It was so effective she stopped taking everything else. But the insurance company stopped covering it years ago, and since then her doctors have reduced her other opioid prescriptions. Heath said she is luckier than most. Her insurance company will still pay for more than the CDC guidelines dictate.
“For now, I am safe,” she said. “I am going to continue doing what I have always done, investigate other treatments, other supplements, what other people have done, and try it myself. That’s what I had done this whole time, and that’s what I will continue to do…. I can’t sit here and live in fear of the future, it doesn’t do me any good.
… One day the pendulum will swing the other way. This will pass, and there will be a lot of collateral damage from it.”
Pain patients have told the American-Statesman they want the CDC to repeal the 2016 guidelines, or at least issue a statement exempting people with chronic conditions. They say they want doctors to control their care, not lawmakers. And they want people to know that not everyone who takes opioids is an addict, though they have sympathy for those who are. More than anything, they want compassion, for their lives as well as those lost to the opioid crisis.
“Each person here is one illness, one accident or one surgery away from being in our shoes,” Heath said. “How would you want your severe pain to be treated?”
