Four heating pads covered Cammie LaValle’s legs, back and chest as she sat in a recliner one recent afternoon in her Farmington home. The shades were drawn and the lights were low.
“I’m like a bat,” the 51-year-old said, shortly after getting off the phone with a fellow member of Minnesota’s intractable-pain community. “Lights hurt my eyes.”
As the 2020 legislative session opens, LaValle, a leading voice in the push to amend state rules on opioids, has a simple message for legislators: Blanket opioid guidelines treat all patients the same and are harming patients most in need.
Her goal is to ensure state law and guidelines recognize that while opioid-related deaths have become a national scourge, the quality of life for intractable- and chronic-pain patients can directly depend on access to legally prescribed opioids.
LaValle believes the pendulum has swung too far in reaction to the opioid epidemic, with state monitoring programs causing doctors to be overly cautious in prescribing opioids to intractable- and chronic-pain patients.
LaValle’s activist role for this often voiceless community has made her a frequent shoulder to cry on. The phone call earlier this day was from a friend with multiple sclerosis who had planned to join her at a meeting of the state’s Opioid Prescribing Workgroup that night. But the woman had to go to the emergency room with gallbladder problems. Doctors had previously “force-tapered” her to a quarter of her needed opioid medication. At the hospital, she felt the suspicious gazes of doctors and nurses.
“That happens to all of us,” LaValle said. “She was crying and saying, ‘I don’t want to just be looked at like a drug-seeker.’ ”
LaValle’s voice and hands shook as she talked. Late afternoon is when she hits her wall.
She took a Percocet as her husband drove her to the meeting in St. Paul. Once there, LaValle spoke in her friend’s stead, joining a few dozen intractable-pain patients to show how the pendulum swing has human consequences.
“If we could do it any other way, I’m sure we all would,” said Ashley Sears, a 41-year-old from Zimmerman with fibromyalgia. “I want them to understand what it’s like to have a condition that’s literally without a cure, and how seemingly small steps in the Legislature can cause big problems for chronic-pain patients.
“In chronic-pain circles, suicides are increasing daily. The stress of not knowing whether or not our medications will be cut off is literally killing us.”
Most in need are hurt
In 2015, due to a rapid increase in overdoses, life expectancy in the U.S. entered a sustained decline for the first time since World War I. Nearly 16,000 citizens died of drug overdoses in 1999. By 2017, that number surpassed 70,000, according to the Centers for Disease Control and Prevention. While opioids have been cited as a primary culprit, LaValle points out most overdoses come from street drugs or illegally obtained opioids, not legally prescribed opioids.
Still, opioid-prescribing numbers have been eye-popping. The total number of dispensed prescriptions peaked in 2012 at more than 255 million nationwide, dipping to 191 million total in 2017.
LaValle understands the need to curb overprescribing. But solutions, she said, have been so draconian that pain patients most in need are being hurt. For patients where the benefits of opioid medications outweigh the risks, LaValle is lobbying for more patient-centered legislation that overrides current state guidelines.
Amber Bullington, of Minnetonka, is an intractable-pain patient in LaValle’s orbit. She had been on opioid medications for 15 years when her physician gave her six weeks to drastically reduce her intake. This force taper brought her down from 500 morphine milligram equivalents, a standardized unit for measuring opioids, to a fraction of that. (The FDA has since issued warnings against such rapid tapers.)
“It nearly killed me,” Bullington said. “I was nonfunctional for one year.”
The legislation the intractable-pain community believes needs amending is the Opioid Prescribing Improvement Program, passed in 2015. Sen. Greg Clausen, D-Apple Valley, who represents LaValle’s district, has been a leading voice in arguing for the change. It was LaValle who spurred Clausen’s interest — specifically that the Opioid Prescribing Workgroup doesn’t include the intractable- and chronic-pain communities as voting members, and that the blanket guidelines force doctors to risk state censure if they prescribe higher dosages of opioid medications to intractable-pain patients.
“Physicians are afraid,” said Clausen, who believes doctors should be given latitude. “They don’t want to be sued for noncompliance, but they always want to do what’s best for their patients.”
An unlikely advocate
LaValle’s problems started with a 2013 carpal tunnel release surgery.
Most people recover just fine. LaValle did not. She’d wake screaming from pain. A second corrective surgery didn’t help. LaValle learned the initial surgery had damaged a nerve bundle. She was diagnosed with complex regional pain syndrome, which ranks worse on the McGill Pain Index than unprepared childbirth. At one point, the pain was so intense she begged doctors to amputate.
“When I have flares of this — and I’m a pretty tough chick — I can’t talk,” she said. “I can barely breathe. I just scream.”
She went from being an active person who spent weekends landscaping to someone who hasn’t worked full-time since the surgery. What started as an incurable nerve problem has cascaded into other debilitating problems: cluster headaches, occipital neuralgia, autonomic dysfunction, hypertension.
“There’s a lot of guilt with Cammie,” said her husband, Dan LaValle. “She says, ‘Why are you sticking around?’ But she’d do the same for me. She’s courageous — just getting up out of bed when anybody else would stay there.”
LaValle has tried everything. The state medical marijuana program is too expensive, and she doesn’t like how marijuana makes her feel. She takes plenty of Advil — 1.5 million milligrams of ibuprofen and acetaminophen last year — but that causes stomach and liver concerns. She’s had immunoglobulin therapy, but it costs $7,200 per infusion and isn’t covered by insurance. She was prescribed morphine a year ago for breakthrough pain, but the prescription was later taken away. She has Percocet and Tramadol, but her clinic is tapering her doses because of state guidelines. Even though she is a palliative care patient and technically exempt from state guidelines, she still worries those prescriptions may be taken away by extra-cautious doctors.
“When there’s nothing left, and you have something that has this much pain involved with it, and they think it’s OK to reduce your medication that you’ve never abused ...”
Her voice trailed off. “This isn’t a medication somebody wants to be on,” she whispered.
All of which has turned her into an unlikely advocate for a voiceless community, fighting what she sees as a one-size-fits-all strategy for combating pain.
“The opioid epidemic has done such injury to every community across the nation, and we can’t lose sight of that,” said Rep. Robert Bierman, DFL-Apple Valley. “But doctors know what their patients need. There’s a lot of concern by doctors of being put in camp of being an ‘overprescriber’ right now. But we need to ensure the people who need these medications can get these medications.”