Unintended targets: How pain patients suffer in the opioid crisis – By Mary Huber, American-Statesman Staff – Sept 2018
You can read about what I think of these supposed “unintended” consequences: CDC Opioid Prescribing Guideline: Unintentional Consequences?
Sonya Gibson said she doesn’t schedule anything before noon. She usually gets in a few good hours folding laundry and cleaning the house before she has to lie back 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
- musculoskeletal disorders,
- degenerative disc disease,
- peripheral neuropathy,
- multiple sclerosis and
- kidney disease.
They require pain medication to live normal lives.
This is the main point that’s getting lost in the arguments about opioids.
I’m sure most of the anti-opioid crowd believes we’re getting high from them, just like they would if they took them when they didn’t have pain. They don’t really understand how different opioids feel when we take them as a source of pain relief, not a high.
They believe we’re saying we want to get the pleasurable high from opioid drugs when what we’re asking for is pain relief. The pleasure of pain relief is being confused with the pleasure of getting high.
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.
“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
Deaths on both sides
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.
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.
A month later, he killed himself.
The guidelines are merely recommendations — they aren’t mandated by law — but many prescribers have chosen to adopt them anyway.
Adopting these guidelines as fixed limits on prescribing actually goes against the guidelines, which say that each patient is to be considered as an individual whose needs may differ from others and whose care must be individualized.
These and other regulations have led to a widespread cut in the amount of opioid drugs being prescribed.
However, cutting prescriptions hasn’t translated to a drop in fatal opioid overdoses.
It hurts even more to know that all this agony of pain patients deprived of relief serves no purpose and accomplishes nothing except to torment pain patients.
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.
Yes, it’s not pain patients that are dying in droves, it’s users of street drugs that have become extremely dangerous because most are now adulterated with illlicit fentanyl – and this is what’s killing people.
No one wants to be the outlier’
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,” state Rep. Four Price said at the hearing.
But not on bad street drugs that are killing so many people?
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.
Or, for that matter, any customer of the CVS pharmacy chain, which has already created a limit of 90 MME and won’t fill prescriptions over that amount.
Medicare is following suit, as well as private insurance companies like UnitedHealthcare and Aetna, which require prior authorization for higher doses.
Pain doctors say, regardless of mandates, they feel pressured into complying with the CDC guidelines, fearing malpractice lawsuits and punishment from the Drug Enforcement Administration.
This is so ridiculous because the guideline does *not* recommend across-the-board opioid cuts. Instead, it recommends individualized treatment, but that’s exactly what these folks mandating the guidelines are missing by setting arbitrary dosage limits.
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, one-size-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.’”
Here’s someone who makes sense – and will therefore not be listened to.
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 multimodal 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.
But now the DEA is going after those medications as well because some people are using them for the high and overdosing.
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.
UnitedHealthcare 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.
Why are these insurance companies not being blamed for promoting opioids?
Pricing them so low versus non-opioid medications or alternative treatments forces many patients to take opioids as their only source of affordable relief.
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.
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.
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.”
Yet we don’t hear anyone complaining that surgery doesn’t work for long-term chronic pain, just like they say opioids don’t.
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.
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.
I think it’s outrageous that the DEA and law enforcement now controls our medical care.
If this were any other condition (or at least an objectively measurable one) there would be huge protests by medical professionals about this infringement on medical practice.
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.