BISMARCK – Jessie Quinn and J.S. may soon have two choices: relocate, buy black-market opioids, or commit suicide, and Quinn’s options are even more limited.
At 65 years old and after 25 years battling degenerate spinal issues, Quinn can’t walk that far.
Both Quinn and J.S. – who requested using his initials as he is afraid of retaliation from the medical community – go to Sanford Health for pain relief. They’ve both exhausted all avenues for help and say opioids are the only relief they’ve been able to find. Both of them – and others – are saying that their doctors have given them “the talk.”
In a time of national urgency for lowering opioid-prescription statistics, they were told only weeks remain before their painkilling prescriptions end.
“My options are this: find a new doctor, move, street drugs, or suicide,” J.S. said. “So we are caught in the middle here and don’t know what to do.”
Where is the sudden pressure to halt opioids coming from?
Not from Governor Doug Burgum’s office, Mike Nowatzki, the communications director reported.
“I know it’s definitely not an executive order… but I will look into it, and I will try to get to the bottom of it,” Nowatzki said.
The North Dakota Department of Health was shocked at the news, according to Nicole Peske, the agency’s public information officer.
“It doesn’t sound like an order from a state agency, it doesn’t sound like anything but a Sanford decision,” Peske said.
Sanford Health’s Medical Officer, Dr. Douglas Griffin, responded by saying the hospital has no agenda to stop prescribing opioids, but supports the CDC guidelines as one resource for their practitioners.
“We do have a goal to make sure our doctors are prescribing them responsibly and to reduce the amount being prescribed,” Griffin said in an email. “This is a nationwide effort and Sanford is doing its part.
“No, there is not a policy. But for some patients it is medically appropriate to wean them. For example, their dose is too high and their risk for side-effects is a concern. We do offer alternative therapies, non-opiate medications, massage, and many other options that can help a person that may need to be weaned.”
Sanford Medical Center Fargo reported opioid prescriptions have been reduced 40 percent for the fiscal year 2019.
The ultimatum Quinn and J.S. say they’ve received closely resembles House Bill 1063, which took the CDC proposed guidelines and tried to turn them into law in January. The bill attempted to stop opioid therapy of over 90 morphine milligram equivalents per day, or more than a seven-day supply, excluding certain patients. Companies involved in manufacturing, dispensing, and prescribing would have had until July 1, 2020 to be in compliance.
The bill failed, but not before State Health Officer Mylynn Tufte, of the North Dakota Department of Health, spoke in support of the bill on January 22.
During his testimony, Tufte referred to the CDC recommended guidelines that House Bill 1063 intended to implement. The CDC recommended a blanket response – excluding some patients – saying that opioids should be prescribed only when the benefit outweighs the risk, and that physicians should prescribe the lowest effective dosage.
“While we recognize there have been changes in prescribing practices by our clinicians and an increased awareness by citizens about the dangers associated with prescription drugs, that has not yet resulted in a significant decrease in the number of controlled prescriptions…” Tufte said during his testimony.
No mention was made in testimony or in the bill on how to take care of those that the health care system has hurt, or how to continue care for those who have found no other alternatives to pain relief but addictive opioids.
“To me it’s politics now dictating the doctor-patient relationship which I think is completely wrong, and it’s a massive shift in how we are treating patients, regardless if there is a problem or not, and they’re hiding behind the CDC guidelines,” J.S. said.
‘Driving them to suicide’
“It seems to be happening, it seems to be insurance companies, and Sanford is taking away pills and not providing any alternative either,” Democrat Representative Marvin Nelson said. “It’s public relations, and using these CDC guidelines which aren’t supposed to be used that way. It’s the old ‘We got to do something,’ so they will do something wrong.”
The state’s response has not been enough, Nelson, of Rolla, said. He plans to introduce his own House Bill 3036, originally as a counter to HB 1063, but more to oppose accepting the CDC guidelines and create laws that will focus on individual needs of patients.
“I am very concerned,” Nelson said. “Opiates have their problems, but to just take a person without evaluation… and say ‘You’re done.’ It’s medical malpractice, you are not treating the patient, you’re responding with a bureaucratic fix. I know for a fact that people are thinking about killing themselves. They’ve told me they won’t go back that they will kill themselves before going back.
“All we’re doing is driving people to street drugs or driving them to suicide.”
The current system is not setup to help those who have become addicted to opioids. Stigmas are attached. Bills like HB 1063 will push chronic pain patients to the extreme, Nelson said.
“We’re taking chronic pain patients and treating them as addicts, and then pat ourselves on the back after the statistics go down,” Nelson said.
“I hope Sanford and these other hospitals gets their asses sued.”
People aren’t dying from the pills, Nelson said, but after their sources dry up, they will turn to the streets where bad drugs, possibly laced with poison or fentanyl, can lead to increased overdoses and near certain death.
Especially if no alternatives to opioids are offered, Nelson said.
Sanford Health has historically been against prescribing medical marijuana, now legal in North Dakota, but recently changed their outlook, according to press releases on Sanford Health’s website and Christen Rennich, senior communications specialist with Sanford Health.
“Sanford does not endorse or oppose the use of medical marijuana,” Rennich said the hospital’s official stance is. “The decision is up to each Sanford doctor and what they think medically best for patients. We base our discussions on medical research to ensure the best treatment options.”
Both J.S. and Jessie Quinn stated that their doctors at Sanford have so far refused to prescribe medical marijuana for their pain.
“Literally the way we have it in the law is that you’re supposed to go try opioids for three months before you try medical marijuana,” Nelson said. “It just seems so convoluted, and I don’t think doctors are the problems, but we have corporate lawyers who are practicing medicine, and all they’re worried about in the end is corporate image.”
North Dakota’s response to opioid epidemic
Shortly before the opioid epidemic swallowed the nation grabbing lives and headlines, North Dakota began programs to help those who are addicted, including the Prescription Drug Monitoring Program in 2005, the Take Back programs that started in law enforcement centers in 2009, and the North Dakota Department of Human Services was approved as the Opioid Authority to initiate opioid treatment programs in the state, according to Behavioral Health Division Director Pamela Sagness.
Governor Doug Burgum also signed an executive order in 2017 directing agencies to make naloxone – a drug that treats overdoses – available to those in need.
The numbers of opioid users has more than doubled since 2015, according to a report filed by the North Dakota Board of Pharmacy. In 2015, total users in North Dakota totaled 3,786, which had increased to 7,386 by the end of 2018. Out of 4,278 registered doctors in North Dakota, 3,638 authorized prescriptions for opioid-based pain fillers in 2018, the North Dakota Board of Pharmacy reported.
Among all pain dulling medicines, including cannabinoids, steroids, sedatives, or even anesthetics, opioids were by far the largest class of painkillers prescribed in North Dakota since 2015, the North Dakota Board of Pharmacy reported, with a total of 132,829 prescriptions signed in 2018, which was approximately one-third of all medicines prescribed.
Cass County saw the largest dosage unit for opioids with 3,451,076 total units prescribed in 2018, the North Dakota Board of Pharmacy reported. The state’s total of prescribed painkillers for 2018 was 5,339,723.
The state has implemented strategies to decrease access to opioids and prescription drugs, which they hope will decrease rising opioid overdoses and related deaths, according to North Dakota Department of Human Services.
North Dakota also joined a lawsuit against Purdue Pharma – the creator of OxyContin that is now contemplating filing for bankruptcy – saying the pharmaceutical company violated state consumer protection laws by denying and downplaying addiction risks.
Opposition to CDC guidelines increases
As scrutiny of opioid over-prescriptions and dozens of lawsuits against manufacturers intensify, Sanford and other hospitals want opioid prescriptions to go down. So does the state. So do legislators, doctors, and public health officials, but the danger to patients addicted by government-supported health care and judicial systems, is real.
Three years after the CDC came out with their recommended guidelines, doctors are speaking out. The American Medical Association and the Office of the Assistant Secretary for Health both passed resolutions saying they do not support the CDC guidelines.
“Although the guideline is voluntary and only intended for primary care physicians treating non-cancer pain, many pain patients have been forcibly tapered to lower doses, cut off entirely, or even abandoned by their doctors – all under the guise of preventing addiction and overdoses,” the AMA report stated.
“Resolved that our AMA affirms that some patients with acute or chronic pain can benefit from taking opioids at greater dosages than recommended by the CDC Guidelines for Prescribing Opioids for chronic pain and that such care may be medically necessary and appropriate.”
“The CDC recommendation for duration of treatment should be emphasized as guidance only for a general approach, with individualized patient care as the primary goal and the clinician then considering all modalities for best outcomes,” the Office of the Assistant Secretary for Health report stated.
On March 6, 300 medical experts from HP3 Health Professionals for Patients in Pain sent a letter to the CDC asking for the organization a “bold clarification” of its misapplication on its guidelines.
“We urge the CDC to follow through with its commitment to evaluate the impact by consulting directly with a wide range of patients and caregivers, and be engaging epidemiologic experts to investigate reported suicides, increases in illicit opioid use and, to the extent possible, expressions of suicidal ideation following involuntary opioid taper or discontinuation,” the letter stated.
For J.S., his pain began in November 2010 after an adverse reaction to H1N1 vaccine while in the military, he said. His immune system is broken and “eats the coating off my nerves,” he said. He went through the government vaccine court and won a successful settlement. He is 100 percent disabled, but had to retire from a federal government position because of his illness.
He is in pain management, but so far there is little help besides his painkilling prescriptions. Aquatic classes, holistic medicine, acupuncture, or massage won’t help him.
“And I was told we don’t have any of those things in place yet, and I find that very problematic,” J.S. said. “And of course Sanford won’t recommend any medical marijuana for any of its patients. So in essence we’re being told that there are no options for your care.”
So far, J.S. said he has talked to two doctors and a pharmacist who are all reporting the same story.
“A patient will be weaned down to Center for Disease Control Guidelines, which is 90 morphine gram equivalency, and they will do it regardless of your diagnosis, regardless of any type of pain management you had in the past,” J.S. said. “It is a forced wean, regardless of anything, and the patient will be transferred to primary care doctor and will no longer be in the pain management care.”
When Jessie Quinn’s doctor sat her down, swiveled her chair closer, she immediately cried out.
“I said, ‘no, no, no’… and she said ‘Yeah I have to talk to you about this,” Quinn said. “We got an order from the state, apparently the state handed down an order to Sanford that we’re prescribing too many painkillers, and we have to decrease and eliminate all the prescriptions by this summer,’” Quinn said.
“I started crying, I cry so easily because that’s the way it is. When somebody rips that hope, there is nothing worse. I put my head in my hands and sobbed, and she started crying too and said ‘I am so sorry.’
“I told her, ‘expect suicides, expect patients to kill themselves,’ because that is what is going to happen.”
Quinn has suffered for more than 25 years, has tried surgeries, electric treatments, has a titanium rod in her back, and nothing has worked except for opioids, she said.
Ann Malmberg is with the director of the Blue Ribbon Commission on Addiction. As a former nurse, she knows doctors recognize that the health system is partly responsible for the current opioid addiction problems in America.
“I know that CDC guidelines have come out and most of the hospitals, and the prescribers, all of the hospital medical systems are under the gun for the amounts of prescribing, and they’re working with people who are on these drugs, they need to sign a contact and begin to reduce the use of morphine,” Malmberg said. “The goal for the providers are they are working with them on alternative measures, much more like physical therapy, emotional therapy, massage, help people build back up their resistance to the pain.
“One of the terrible things about morphine and opiates is that they kill your own endorphins.”
Killing endorphins means less tolerance to pain, and building a better threshold could take up to 12 months, Malmberg said.
“I think that with most people the doctor is really trying to work with the patients in a way to take them off slowly, and figure out a replacement strategy, but I wouldn’t say that all practitioners are doing it right. There is sometimes a stigma with these patients, … they don’t understand it’s a disease model of pain management.”
Tina Lingen, of Bismarck, earned a master’s degree in public policy while being prescribed pain killing opioids, she said. She suffered for years with abdominal pain before doctors discovered she had chronic pancreatitis. She doesn’t go to Sanford, and has not been issued an ultimatum, yet, but sometimes feels as if society and even her own doctors think of her as a drug addict.
“In all my years of seeing a pain management physician, I’ve always signed a pain contract, submitted to drug testing, used me medication as prescribed and never ran out of medication early,” Lingen said. “If I was a Sanford patient and subjected to this policy I would feel like I was in another losing battle with the U.S. healthcare system as I have a legitimate and well documented cause for my pain.”
She’s still taking prescribed medication sparingly, despite having a successful surgery, which has decreased her pain. Since January, she’s gone to the emergency room three times for “stabbing shooting pain, to the point I was throwing up and couldn’t talk,” she said.
“How many patients with legitimate chronic pain have to suffer in order to stop drug seekers from obtaining opioids?” Lingen said. “It is a cruel policy. I don’t know what the solution is to curb people from abusing opioids while still treating those with chronic pain. However, I feel as if Sanford’s policy will drive patients to obtain opioids on the street. Pills obtained the way may be laced with Fentanyl.”
Kristin Leigha, from Mandan, “fired” her Sanford doctor a few months ago and has decided to try a holistic approach – to include medical marijuana – this year. She has suffered from chronic Epstein-Barr, a disease that can cause extreme chronic fatigue among other ailments, for more than 10 years and is in pain – with or without opioids – 24 hours a day, seven days a week, she said.
Opioids only dull her pain.
Although Leigha is still on her last opioid prescription, and is scared about her new approach, she can’t understand why any doctor would suddenly take a patient off painkillers they depend on to live as normal a life as they can.
“I don’t know, even though I made the conscious decision that I want to try this, I don’t know if I can survive because my pain is so bad,” Leigha said. “I really feel for people who don’t have other options.”
Most won’t turn to the street for pharmaceuticals; they will end up with heroin, possible laced with something much stronger, Leigha said.
“Chronic pain is different because there is no light at the end of the tunnel,” Leigha said. “You can’t say I need to heal up and in a couple weeks I will be fine. I’m looking ahead, and saying ‘Well, I got ten more years and it’s very daunting.’
“They’re going to create heroin addicts. They’re just going to create a new market.”
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