The epidemic continues to claim more and more lives.
The number of people who are dying from overdoses of heroin, fentanyl and other opiate-based drugs is growing.
But as government and health officials scramble to address this epidemic, a group of people who use opioids as legitimate prescription medications have been suffering in silence. They have found these medications to be the only treatment for the crippling chronic pain that overwhelms their lives.
"Chronic pain takes away your life. It takes away everything you want to do," said Johnna Magers, an Indianapolis resident suffering from pain caused by nerve damage.
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For those involved in the Don’t Punish Pain Rally, the addiction crisis caused by heroin, fentanyl and other opioid-based drugs is preventing them from getting the medication they need to function. Legislators and health officials have taken aim at prescription opioids, providing layers of regulations to eliminate over-prescription by doctors — which experts have attributed to creating the opioid epidemic in the first place.
But with regulation so onerous, an increasing number of doctors have stopped prescribing the drugs at all, even to patients who have been responsibly taking them for years or decades.
The Don’t Punish Pain Rally wants to be sure that their voices aren’t lost in what they call the hysteria surrounding opioid prescriptions.
"Nothing else has worked, so this is a last resort," Magers said. "Most pain patients are like that. We’ve tried the alternatives."
Don’t Punish Pain Rally is a grassroots organization founded by a Rhode Island resident, Claudia Merandi, who suffered from Crohn’s disease. The goal was to protest and have the voices of chronic pain patients heard regarding the neglect of the chronically-ill community and pain patients.
Participants from across the country organize rallies and protests to voice their concerns and raise awareness. Protests will be conducted in cities around the U.S., including at Monument Circle in downtown Indianapolis on May 22. A nationwide march to the Centers for Disease Control is scheduled for June 21.
Those involved with the rally are working to connect with more chronic pain patients in Johnson County and southern Indiana, with the potential to have a Don’t Punish Pain Rally in this part of the state.
Many of the people who are part of the Don’t Punish Pain Rally want to remain anonymous, concerned that their involvement could make them targets of officials.
Two women who are part of the rally from Johnson County are scared that if their doctors find out they are involved, they’ll decide to stop prescribing to them for seemingly fighting against their recommendations. One of them, a chronic pain patient for 18 years, had a doctor abruptly close their office unexpectedly, leaving her scrambling to find a new doctor. She is holding off on a surgery she needs for fear of not being able to get the proper medications.
Another woman has been dealing with chronic pain since 1998 after suffering nerve damage from viral meningitis. Her doctor retired after seeing the potential problems these regulations could cause. When he told her, he cried and apologized for leaving her.
The Don’t Punish Pain Rally has grown out of these tribulations and the stigma attached to people who use opiate medication for chronic pain.
Opioid prescriptions have been in steady decline in Indiana since 2012, when the statewide prescription rate was 112 opioid prescriptions per 100 people. In 2017, that number had dropped to 73 prescriptions per 100 people.
But overdose deaths from opioids continue to rise. Indiana reported 1,118 deaths from opioid overdose in 2017, up from 369 in 2012.
In a report released by Indiana Department of Health on April 3, this wave of increased overdose deaths can be attributed to illicitly manufactured fentanyl, a synthetic opioid that can be 100 times more powerful than morphine.
This illegally produced fentanyl can now be found in combinations with heroin, cocaine and counterfeit prescription pills, according to the Drug Enforcement Administration.
In state reports, deaths from illicitly produced fentanyl are lumped in with prescription drugs such as oxycodone and hydrocodone, an unfair connection between illicit drugs and legitimate medication, Magers said.
Guidelines from the Centers for Disease Control, in addition to legislation passed by Indiana to add layers of regulation and reporting required of doctors, have made prescribing opioid-based medication increasingly time-consuming.
Dr. Richard Feldman, a family physician in Indianapolis and former Indiana State Health commissioner, wrote a column in December addressing the issue. He said that in his experience, and from speaking with other health care providers, the myriad regulations have led many to underprescribe opioid medications, or to stop prescribing them at all.
The scrutiny for physicians is so intense, with the potential for the loss of their medical licenses or even criminal narcotics charges, that doctors are steering away from opioids entirely.
"With these pressures, the opioid-prescribing medical community has contracted, reluctant to prescribe," he wrote. "Patients with legitimate chronic pain are commonly weaned down on dosage, possibly below what is required to control their pain, or told they will no longer receive opioids. If a patient’s physician retires, it may be virtually impossible to find a new willing prescriber.
Magers started suffering from chronic pain in 2004, after the birth of her fourth child. She experienced debilitating neuropathy, weakness and pain in the nerves in her legs.
She had always been a very active person. She waited tables for many years, loved riding horses and often went hiking. Suddenly, she could no longer bear to do any of that.
"Nobody could tell me what was wrong. They did MRIs, nerve testing, nobody could tell me what was going on. But it felt like I was walking on hot coals all the time," she said. "It’s like there is iron poking up through my feet."
After countless tests, doctors appointments and specialists, Magers connected with her current doctor. He suggested it was a disc in her back leaking on her nerves. There were no surgeries or procedures to correct it.
To treat the pain, her doctor suggested a combination of low doses of medication, which worked for Magers’ chronic pain. With the help of the medication, Magers is able to work regularly as a dog walker. She can clean her house, cook dinner for her family and go out with friends. Considering that for a portion of the past 15 years, she was essentially restricted to her bed, it’s a miraculous improvement.
"If they take that away, I don’t know what I’m going to do," she said.
That is the situations that those involved in the Don’t Punish Pain Rally fear daily.
Magers is still able to get the medication that she needs, though she has had to change pharmacies when her insurance stopped paying for her medication.
Many that she’s spoke to are not as lucky, she said.
Organizers are hoping to grow the Don’t Punish Pain Rally to include a task force and organization with meetings around the state of Indiana. The group is also working with legislators to adjust existing bills so that chronic pain patients are protected.
"We’re the ones who are getting lost in the whole discussion," Magers said.
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Don’t Punish Pain Rally
What: A protest by chronic pain patients and their supporters to have their voices heard regarding the neglect they have experienced due to guidelines and enforcement on opioid medication.
When: Noon to 2 p.m. May 22
Where: Monument Circle, downtown Indianapolis
How to get involved: Information on the Indiana group can be found at DontPunishPainRally.com/IN, Indiana Don’t Punish Pain Rally or by emailing [email protected].
Johnson County and southern Indiana chronic pain suffers are also looking to organize and reach people, which can be done through the Indiana Don’t Punish Pain Rally Facebook page.
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