Battling an Epidemic - Part Two: New initiatives to reduce prescription opioids leaves patients behind
Their remaining meds are like 'little pieces of gold'
She calls them her “little pieces of gold.”
Cindee Lee-Voeller has been hoarding the tiny pink pills as if they truly were pieces of gold. They buy her time, energy and the chance to live normally.
To her, the oxycodone is invaluable.
Lee-Voller has been molding her days around the pink pills in that bottle. Without it, the 56-year-old said her chronic back pain from degenerative bone disease feels “like someone is stabbing me repeatedly.”
But the 60-tablet prescription at the beginning of April was the last bottle she’ll receive, so now she must make a choice. Does she take a pill for four hours of relief? Or does she save them for the even worse days she knows are ahead?
“Now I’m sitting here in pain, and I have to decide when is going to be a time I’m losing one more of that piece of gold” Lee-Voeller said from her Marion home. “That’s my life. If they’re gone, I’m so screwed.”
Lee-Voeller, along with five other individuals with chronic pain, have told The Gazette of their struggles since they were cut off from their opioid medication. They literally feel the impact of a statewide trend of physicians who, in light of the national overdose crisis, no longer prescribe the medication and are taking steps to cut back on using it as a chronic pain treatment.
Like others who spoke with The Gazette, 60-year-old Sharon Stakes, of Cedar Rapids, said she understands why doctors are being cautious about prescribing narcotics. However, she also feels categorized as someone abusing her prescription.
“I can’t believe my life has to be in jeopardy because people are abusing it,” she said.
A shift in practice
Several factors, including prescribing practices and a push from pharmaceutical companies, set off the opioid overdose crisis as it is today, according to national health experts, leaving physicians and other prescribers to wade through the aftermath.
In 2016, 63,632 people died from drug overdoses across the United States, about 66 percent of which involved a prescription or illicit opioid, according to the federal Centers for Disease Control and Prevention.
That’s 32,445 deaths related to opioid prescription overdoses per every 100,000 people. In Iowa, that’s 136 opioid prescription overdoses per 100,000 people.
The Iowa Department of Public Health doesn’t have data on the opioid prescription rate in the state. But Opioids Initiative Director Kevin Gabbert said the department has been receiving word from patients that physicians around the state are moving away from narcotics as a treatment option for chronic pain.
“It does indicate a shift because we never received those calls before,” he said. “It’s a step in the right direction.”
The national opioid prescription rate dropped to its lowest in a decade in 2016, according to the CDC, only reaching about 66.5 per 100 people.
But in the absence of their medication, all that some of these patients can feel — or can even think about — is the pain. An endless cycle of throbbing, tingling, jolting sensations.
Like Lee-Voeller, these individuals try to make their limited supply last as long as possible.
Stakes, who last received 60 oxycodone pills in November, still has three pills left. Even then, Stakes said she still fears the possibility of pain, like she’s “living with a stalker.”
She’s been trying to learn the triggers of her spinal pain, which can be traced back to a fall down a flight of stairs in 1999 that left her with a broken neck. She tells herself not to push a chair across the room, and to watch her feet going down the stairs to avoid a fall.
When the pain does hit, it’s unbearable and she’s “as panicked as a person on fire.”
And a person on fire will try to douse it. When Katie Lanning was cut off cold turkey from her narcotics — which included fentanyl patches — the 30-year-old from Marion began buying pain medication from friends.
Lanning, a Marion resident who has a disorder called hypermobile Ehlers-Danlos syndrome, a connective tissue disorder, said it “started to become a problem.” She sought aid from the Area Substance Abuse Council in December and has been off the medication since.
Opioids: dangerous and ineffective
Not only are opioid medications highly addictive, but recent research has found they had no greater long-term benefit than non-opioid pain killers.
Last month, the Journal of the American Medical Association published the findings from a yearlong clinical trial that studied medication therapy in 240 chronic pain patients. It stated that those who took non-opioid pain killers — such as Tylenol and ibuprofen — claimed relief at higher rates than those on opioids.
Pain did decline for opioid patients, but functionality — how well an individual can perform daily tasks — did not.
“Eventually with opioids, if you keep taking them long-term, you will develop tolerance or you can be dependent on it,” explained Dr. Rahul Rastogi, director of pain medicine at the University of Iowa Hospitals and Clinics. “So they are requiring more and more, but are not achieving the goal.”
Instead, there is a greater chance of adverse effects. Rastogi said opioids affect cognitive ability and inhibit hormones of the body, which can impact the immune system and the reproductive system.
“As a physician when prescribing (medications), you’re looking for ways to avoid long-term impacts,” Rastogi said.
Nowadays, only a small subset of patients at the UI Pain Management Clinic have a low dose prescription — but only when they can show the drug significantly improves their functionality.
For Maria Graham, not taking her pain pills means a major loss of functionality in her life.
The 54-year-old Cedar Rapids resident had been taking up to six hydrocodone pills a day since 2010 for degenerative disc disease in her back. Without the prescription, Graham said she can’t perform tasks such as cooking or grocery shopping without the risk of harming herself.
“It’s like cutting your arm off,” Graham said. “It is really affecting my quality of life.”
According to Cedar Rapids physician Dr. Monica Meeker, it’s common for chronic pain patients to experience a level of discomfort after a narcotic is out of their system.
“I do see patients who have — because of the way we were prescribing historically and probably too generously — have become dependent on their narcotics,” she said.
Meeker is a physician with MercyCare Health Partners, a primary care clinic that works with low-income patients with complex needs. Since she joined in 2016, Meeker said she’s been acquiring patients who have been treated for chronic pain with an opioid, but who “should not have used them or (should have) been given some other pain management options.”
For these patients, that means a transition off the medication.
“It’s not punishment, it’s not that I don’t believe they have pain — it’s that I want to earn their trust and I want to look at a different way of treating it,” Meeker said.
And she has seen success.
“I have patients who are off medication who can’t believe how well they feel without that sedation side effect that they’ve had for years,” she said.
But it is a difficult transition, she said. The main education piece Meeker shares with her patients is that “we’re not going to get your pain to go away,” she said.
“That pain scale of 10, we’re not going to get you to a zero,” Meeker said. “But if we can get you to a three or a five, and you can go to the grocery store or play with your grandkids, we’re going to get to a three or a five and be safe.”
Life on hold
“Nobody asked the chronic pain patients, what will this do with you?” said Jana Shatzer, 55, of Cedar Rapids. She’s been dealing with chronic pain due to abdominal adhesions and has been on narcotics since 2014.
She did not want to disclose the drug she takes, for fear of it being stolen.
“A lot of people have suffered,” Shatzer said. “It’s very hard to get out of bed in the morning when you know your day is going to be filled with pain.”
Shatzer still relies on an opioid pain killer daily, but was warned by her primary care doctor she may be taken off the prescription sometime in the near future.
“It’s a very scary time for me,” she said.
Stakes, who just received a referral to the Mayo Clinic for her pain, does admit she understands an opioid prescription may not be the best option for her spinal pain, but said “it’s the only thing that works.”
So she intends to advocate for patients such as herself. She plans to soon circulate a petition to the Iowa Board of Medicine, asking the board to consider a stance that supports opioid use for those suffering from chronic pain conditions.
“I’m fighting for my life,” Stakes said.
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