Chronic pain sufferers plead for nuanced approach to opioids
Feb. 23, 2018
TAMPA, Fla. (AP) — Will Michele Jacobovitz get out of bed today?
That depends on how many painkillers she has left in her monthly prescription, which sometimes she's forced to ration. Some mornings are harder than others.
Jacobovitz, 56, has suffered from chronic pain since a 1987 car accident. The Pasco County resident has had 73 surgeries since, from her neck to her ankles, and she has the scars to prove it. In December, she was diagnosed with breast cancer.
She says it's impossible to function without popping a highly addictive painkiller with Acetaminophen and Oxycodone components, in the morning. Without it, she says, there are days she can't get up at all. Or get to the bathroom in time. It can be humiliating.
Jacobovitz says she's not addicted to painkillers, just absolutely dependent on them.
"It comes down to quality of life," she said. "I'm not using these drugs to get high. I'm using them so I can have some kind of life. So I can get out of bed. They don't take my pain away. But they mask it so I can function."
She is one of many Floridians who suffer from chronic pain and are worried about a government crackdown that would make it even harder to get the prescription drugs they need every day.
Gov. Rick Scott has proposed legislation that aims to put a dent in the opioid epidemic by prohibiting doctors from prescribing more than three days' worth of opioids — or seven days if doctors can explain why that's medically necessary.
Under the measure, Florida would share a database of opioid prescriptions with other states and require doctors to routinely check it. Doctors also would be trained on proper prescribing techniques.
"When people think of opioids, they think of addicts and criminals," Jacobovitz said. "That's not us."
She and others fear they're being lumped into that group unfairly. They're part of a chronic pain community that also encompasses many of Florida's seniors, who rely daily on pain medication.
Scott's legislation delves into acute, or short-term, pain. But there's no mention of those who suffer from chronic conditions and rely on daily, long-term use of prescription painkillers.
Bills in the House and Senate are progressing steadily. And despite concern from doctors and chronic pain patients, the three- and seven-day limits on acute pain prescribing are unlikely to change, legislators say.
"I have been set on the three to seven," state Sen. Lizbeth Benacquisto, R-Fort Myers, the Senate sponsor of the bill, said. "That was a very strong position on behalf of the governor."
Federal officials are chiming in too.
During an appearance in Tampa, U.S. Attorney General Jeff Sessions touted the Trump administration's efforts to combat the overdose problem, and said doctors prescribe too many opioids.
More people should try aspirin, Sessions said.
"What we're seeing across the country is a reaction to opioid-related deaths, and a myopic focus to decrease access because of those deaths," said Dr. Sarah Wakeman, a physician at Massachusetts General Hospital in Boston.
Wakeman is the medical director of the substance use disorders initiative at the hospital and was part of a Massachusetts task force to examine the opioid epidemic.
"What we need is a balanced and nuanced approach," she said. "More people are buying drugs on the illicit market right now because they can't find the opioids they were used to getting, and there's no treatment facilities in their communities. This is different than the people who have reasonable diagnoses."
Policymakers and the public often confuse dependence on a daily medication with addiction, Wakeman said. "We should be ensuring access to the people who are benefiting from opioids because they have a disease that requires treatment."
Jacobovitz has seen countless doctors over the years to help repair her broken body. She moved to Florida to take care of her aging parents a decade ago at a time when her home state of Kentucky was pushing stricter limits on prescription drugs. Similar to Scott's proposal, Kentucky has a limit of three days for opioid prescriptions.
"The number of pain management doctors in the entire state dropped to five," Jacobovitz said. "It was impossible to get help."
She fears she'll have to leave Florida if the current legislation passes. "I don't know what I'll do," she said.
What's clear is that politicians and advocates feel the need to do something about the pain pill addiction that's sweeping the country. It's led to spiking use of cocaine, heroin, drugs illegally laced with fentanyl, and ultimately more overdose deaths. The opioid epidemic killed nearly 15 people a day in Florida in 2016 and even more in 2017.
Jacobovitz knows this. She's had her own prescriptions stolen and seen family members suffer with addiction.
"There's no clear answer here how to handle it," she says. "I know there are addicts out there. I've tried to help some of them, like my niece."
Jacobovitz is one of three local residents interviewed recently by the Tampa Bay Times who suffer from chronic pain and fear that new laws will create barriers to the treatment they need. Here are their stories:
. . .
Melissa Gurdus Meiselman spent the holidays alone in her Port Richey condominium suffering withdrawal from painkillers. Her prescription fentanyl patches are meant to be placed on skin, but she chews the used ones before tossing them in the trash, to get the remaining traces into her system.
Meiselman, 74, has suffered from chronic pain for more than a decade. Intense back pain led to other diagnosed ailments, like narcolepsy and persistent migraines. It's the painkillers — fentanyl and an Oxycodone prescription — that help her stay mobile enough to walk her service dog, Lucy, three times a day or get in the car to drive to her doctors' appointments.
Framed portraits and canvases in Meiselman's living room showcase her artistic abilities from years ago, before the pain crippled her ability to paint.
Increasing tolerance to her medications led to higher dosages. But a new pain management doctor she sees in Tampa recently prescribed a much lower dose of fentanyl patches, which was part of what sent her body into withdrawal.
"My last prescription for Oxycodone ran out Dec. 16, and I've been dealing with this ever since."
Meiselman's previous pain management physician dismissed her from his practice in October after she pleaded with him to try options other than the strong opiates she was taking, she said. She started seeing a new pain physician in December.
Meiselman is also being treated for an immune disorder, and recently discovered a lump in her pelvis which is being examined by an oncologist.
She says someone suffering from terminal cancer can find an oncologist who is willing to prescribe the appropriate, strong medications to make "day-to-day living somewhat tolerant, (but) if you are suffering from something undiagnosed but still extremely painful, the whole story concerning the opioid epidemic is your worst nightmare coming true."
She recently bought marijuana CBD oil and a natural supplement called Kratom online to kick the withdrawal symptoms. Meiselman says they help, but don't take all the dizziness or nausea away. She's not registered as a medical marijuana patient in the state because of the hassle it would take to see yet another doctor to get it.
"It's expensive, too," said Meiselman, whose medical bills have been paid on and off by Medicare and Medicaid. Her insurance doesn't cover any cost of the supplements, but helps with the pain prescriptions.
"Pain is a powerful motivator," said Dr. Michael Perry, the chief medical director and co-founder of the Laser Spine Institute. In Tampa, the institute uses non-addictive medications, from Tylenol to Lyrica to Celebrex, to ease pain post-surgery often in place of opiates, he said.
"The problem lies in that it is easy for physicians to pick up the prescription pad and write a prescription for a painkiller. It's what's been marketed to us. But there has to be a balance," Perry said. "You can't stop people cold turkey if you want them to discontinue using these powerful narcotics. They need to be in a therapy program. Getting people off these narcotics is a step in the right direction for our society. But moving forward, we need to come up with procedures for those who suffer from chronic pain."
Rehabilitation centers, Perry said, will need to play a large role in helping people assimilate to pain and life after long-term opioid use.
"If someone is already on opioids, getting three months or one month supplies at a time, you can't just tell them they can only get three days' worth now," he said.
Already it's not easy for Meiselman to get in to see her doctor in Tampa every month to write her prescription, let alone find a pharmacy willing to fill it.
"The pharmacies won't fill it a few days early or sometimes at all," she said. "And they definitely won't touch it if you don't have a handwritten note from the doctor every month. There's no calling it in or faxing anymore."
She wishes she could rely solely on the supplements she takes, but feels she is too dependent on her prescriptions.
The seriousness of addiction isn't lost on Meiselman. Her daughter died in 2011 when she was 40 years old, after battling a chronic back condition.
"The MRIs showed a back of an 80-year-old when she was 30," Meiselman said. "Her cause of death was listed as sudden cardiac arrest but she asked me to understand her motive of an overdose. Fortunately, I told her that I understood her options and was heartbroken she had to make such a choice. She might be alive today if there were standard treatments for non-cancerous chronic pain."
In the current environment, access to pain medication "can be turned off at any time," Meiselman said. "What's sad is that our aging population will suffer for this more than anyone else."
. . .
Richard Ulrich was a young man when he faced a debilitating back injury while working in the warehouse for a major grocery chain in Tampa. As a pallet of wood and supplies fell, he reached out to try to catch it, stressing and snapping the ligaments, muscles and nerves in his lower back.
That was almost 30 years ago. At nearly 60, Ulrich has spent half his life battling the pain.
He says it has cost him his career and kept him from finishing his bachelor's degree. It has ended relationships, and for some time, led to him being homeless.
"I was living with undiagnosed post-traumatic stress disorder, anxiety and depression for years, which was secondary to my injury, from the stress of it all," said Ulrich, who lives in St. Petersburg.
He says he's tried just about everything to treat the soreness in his back — from surgeries to cortisone shots to months of physical therapy. But the only thing that provides relief is Prednisone, which he uses over one- to two-week periods a couple of times a year, in addition to a daily morphine prescription.
"As I get older I know it's going to keep getting worse," he said. "I've developed sleep apnea because of it. There are days when I need to lie down by 5 p.m. to start to decompress my back from the day. I'll stay there all night, using pillows for pressure points. Sometimes it's longer, it just depends on the level of pain that night."
A combination of Medicare and Medicaid help pay his medical bills, but Ulrich said he ended January with just 64 cents in his bank account after expenses.
"Not to mention I'm being inundated with the media calling me an addict," he said.
Ulrich says he lost any semblance of quality of life when he became injured. He was financially supported by his father for some time. But once his dad passed away and the Great Recession hit, he was never able to fully get back on his feet.
He said that pharmacies are limited in the amount of opioid prescriptions they can fill as a percentage of total sales, or that's what he was told. So he's forced to try pharmacies farther away from his home to get his prescriptions filled.
Larry Golbom, who spent 40 years working as a pharmacist in Tampa Bay, including a 10-year stint at CVS, says pharmacists have been encouraged during the opioid epidemic to use their discretion when filling prescription painkillers.
"There are plenty of times when I'd have the techs just say, 'Sorry we don't have that' to an individual who has never been to the store before but has an opioid prescription," Golbom said. "I remember a time when a woman came through the drive-thru with a 20-pill Oxycodone prescription from a dentist. She said no one would fill it for her. I believed her and I didn't either."
Just as pain management clinics, or "pill mills," faced intense pressure from politicians and law enforcement in the early 2000s, pharmacists these days are feeling the pinch to crack down, Golbom said.
"You don't want to be the only pharmacy filling these kinds of prescriptions or else word gets out," he said. "Every pharmacist has their favorites, the same people they see all the time, so they keep them supplied. But it's risky to accept more."
He said the majority of customer service issues and complaints come from consumers who become angry when they can't get their painkillers refilled.
"What is my choice as a pharmacist when you're seeing someone come in going through withdrawal?" he asked. "Which choice actually helps them — to refill or not? They can't live without this drug. The people aren't the problem. The drug is."
Ulrich fears his life will be harder if the Legislature approves more restrictions.
He says one pharmacist has already accused him of "doctor shopping" for pills and threatened him with arrest.
"People think chronic pain users are addicts. That's true physically but not psychologically," he said. "I'm not looking for sympathy but rather understanding. I don't look disabled. I don't wear a shirt or pin that says I'm disabled. But society looks at me as a failure rather than being disabled. And I feel like a failure."
. . .
There are days at a time when Michele Jacobovitz can't work in her garden because of the pain from her fibromyalgia diagnosis. Then there are days when she can't lift her legs higher than the baby gate at her bedroom door, which she uses to keep her pets out.
She used to enjoy volunteering at a thrift store near her home, but after two days standing for hours and moving around the store, her feet swelled so much that her sandal straps cut into her skin.
She says she's lucky she has a good relationship with her local pharmacist. But she worries what would happen if that were to change.
"It's stressful to have to worry every time you get a prescription filled, wondering if this could be your last for a while," Jacobovitz said. "You don't know what that's like until you've driven around for hours, going pharmacy to pharmacy, to be questioned and later drug tested, just to find something that helps."
Like Ulrich and Meiselman, Jacobovitz has sought out alternatives to opioids. She's had several spinal cord infusion therapies. She's had several spinal cord infusion therapies. But opiates are the only option that provide relief.
"Opioids, yes, can be addictive or cause other side effects," said Wakeman, the Massachusetts General doctor. "But there are many people who have been using opioids responsibly through the care of their physician for years and continue to take them. With any medical treatment for a group of patients that are doing well, there's no need to take them off the medicine that's helping because we're in the middle of an opioid crisis."
As bad as the pain is, what Jacobovitz loathes most is how humiliating it can be.
"It's cost me friends," she said. "A woman in my neighborhood bunco group accused me of being an addict, telling me I need help."
It's hard to explain what you're going through, Jacobovitz said.
She hasn't been back to the group's monthly get together since.
Information from: Tampa Bay Times (St. Petersburg, Fla.), http://www.tampabay.com.