The recent CDC guideline recommending physicians re-examine prescriptions of opioid medications have left many chronic pain patients suffering. Here’s one patient’s story…
For Gary Nations, a 54-year-old medically retired police officer who lives in Mississippi, pain is a regular part of his daily life, just as much as eating, sleeping, and talking.
Nations has degenerative disc disorder, a progressive condition resulting from multiple injuries to his neck and back experienced throughout his 22+-year career working in law enforcement. (His career was cut short due to these injuries.)
Despite undergoing 5 surgeries (4 neck and 1 lower back) and trying different treatments to address his injuries, Gary has chronic pain in his arms, legs, neck, back and shoulders. He knows he will always live with some degree of pain and it will continue to worsen over time.
Embracing Pain Management
About a decade ago, Gary was forced to take a medical retirement from his job and go on disability. His restrictions were so numerous—including the inability to sit or stand for extended periods of time, walk up and down flights of stairs, or climb a ladder—that he could not perform his job to satisfaction. “My doctor put me on such light work duty due to my numerous health problems that it ended my career,” he recalls. The chronic pain also contributed to the end of his 28-year marriage. He faced many challenges collecting his workers’ compensation payments and being forced to live without any income for 19 months. As a result, he lost his home and moved in with his mother.
Desperate for pain relief, Gary started an aggressive pain management regimen under the guidance of his primary care physician which enabled him to participate again in some of the “normal” activities that had become to difficult for him due to the pain. Although Gary welcomed back some normalcy into his day he was surprised at how complicated the treatment was.
“I naively thought the idea of pain management was to be pain free,” he admits. “But soon learned that when I am pain free,I'm like a slug. I can’t go out and do things.” He and his doctor experimented to find the best combination of medications to manage Gary’s pain without leaving him feeling mentally foggy and without energy. They tried oxycodone (a short-acting opioid analgesic) and Lortab (a combination of hydrocodone, an opioid and acetaminophen). They also tried long-acting morphine.
The initial doses left Gary feeling so lethargic and sedentary he gained weight and could not function. After a period of trail and error though they found the right combination. Oxycodone 30 mg 4 times a day and a fentanyl 100 microgram/hour patch (a form of opioid medicine that is released gradually) that he changed every 3 days. With this combination, his function improved so much he was able to be active again and lost 40 pounds. Since he was feeling good but still dealing with undesirable side effects from the medication he suggested his doctor lower his doses. “I wanted to drop the oxycodone from 30 mg 4 times per day to 30 mg 3 times per day. He agreed and it worked well for me,” he recalls.
Regaining Function
“With my pain medications at these ideal levels, I could walk, fish, mow the lawn again, and drive my standard-transmission truck for short distances,” Gary says. “I recently got to the point that I could go out and play a round of golf every few months,” he adds.
But all of this new-found freedom has been slipping away, seemingly as the result of a guideline issued in March (2016) by the Centers for Disease Control and Prevention (CDC) that discourages physicians from prescribing high doses (defined as more than 90 mg of morphine or the equivalent) of opioid medication to treat chronic pain in non-cancer or palliative care patients. This guideline may have prompted Gary’s primary care physician of 27 years to stop treating him and refer Gary to a pain management specialist located an hour’s drive away. The new doctor lowered Gary's oxycodone prescription from 30 mg 3 times (a total of 90 mg) a day to one 15 mg pill 4 times a day (60 mg total). “This drastic reduction occured without the doctor even meeting with me to discuss the change,” Gary stresses.
In response, Gary described how the lowered dose was negatively impacting him in a letter to the pain management specialist. The letter was never responded to and at his next appointment, Gary's medication was reduced again—from one 15 mg pill 4 times a day (60 mg) to 15 mg 3 times a day (45 mg)—without explanation. Gary’s dose today, under the pain management specialist, is now 50% of the optimal dose he had settled on under the care of his personal physician. (His fentanyl patch has not been discontinued.)
“I can’t do what I need to do on this low dose,” Gary says. It does not keep his pain at a tolerable level and as a result, his functioning is greatly compromised. Plus, his blood pressure has been rising and he's finding it increasingly difficult to live a normal life.
Tackling Opioid Abuse
Experts say that the CDC guideline is in response to the major public health crisis caused by the misuse of pain medications in the United States. To understand the landscape, consider data from the Drug Enforcement Agency (DEA) shared in a recent CDC overview on Opioid Overdoses available online. It eveals that opioid prescriptions nearly quadrupled from 1999 to 2010, yet the number of people reporting chronic pain was unchanged. Further, CDC estimates reveal that deaths involving prescription opioid overdoses have quadrupled since 1999.
In an apparent attempt to reverse this trend, the CDC presented its recommendations for physicians treating chronic pain patients, including looking to non-opioid therapy options, using the lowest effective dose of opioids possible, and carefully evaluating the benefits and harms of continued use with patients every three months.
While these are recommendations are not a mandate, they have led many primary care doctors to greatly reduce—or even curtail—prescribing opioids for chronic pain patients, despite the fact many patients, like Gary, rely on these medications to get through the day.
Gary speculates that although the guideline is not mandated, he believes his primary care doctor may be afraid that continuing to prescribe opioids could ultimately put his license in jeopardy. (Note: Both Gary’s physician and his new pain management doctor did not respond to repeated interview requests.)
Offering Perspective
While Gary and other pain patients are left struggling in the wake of the CDC’s recommendations, Theresa Mallick-Searle, MSN, RN-BC, APN-BC, a nurse practitioner with the Division of Pain Medicine at Stanford Health Care in California says that this is an unfortunate—and unintended—impact of the new guideline.
Although Mallick-Searle has not treated Gary personally, she understands the frustration he is experiencing. “I actually think that the CDC guideline has had a very positive result, in that it has forced prescribers to be more thoughtful and responsible when prescribing of opioids,” she explains. “But the unfortunate consequence is that there is now much fear and apprehension in many practices about the best way to be responsible prescribers. And, many are choosing to simply not prescribe, or to take away opioids from patients who are otherwise in need and using them appropriately,” she admits.
Life in the Aftermath
The result, then, for Gary is that he must endure the pain caused by the long drive just to pick up his prescriptions every month. He’s also required to return to the specialist every 3 months for monitoring, and must figure out how to function on less medication, which means adjusting his activities again.
“I see the doctor when I am about half-way to a third of the way through the medication. The doctor counts the pills to be sure I am taking them properly and not abusing them,” he says.
Further, Gary is distressed that his pain doctor has not listened about the consequences of the reduced doses on Gary's functioning. Gary has yet to see the pain speciliast face to face; a nurse practitioner handles all interactions. He says he's angry about having no say in his treatment and feels helpless that his level of function will not improve without additional pain medication.
Other Tragic Stories
Clearly, Gary’s situation is not unique. The Internet is full of chronic pain patients with similar stories of treatment refusal and drastic cuts to medication. One patient shared on Practical Pain Managment's Facebook page that a pain clinic in Central Montana eliminated its physician assistant, citing the CDC guideline as the cause, and in the process, it also cut the patients’ opioid doses by 50 to 75% in a two-week period, causing severe suffering for many of them.
There are other stories on chronic pain message boards of patients who are suddenly forced to go back to living with severe chronic pain who admit to contemplating suicide because the future seems so unbearable.
An online study conducted by Pain News Network and the International Pain Foundation (iPain) confirms this disturbing trend. The findings reveal that more than 70% of pain patients who responded are either getting a lower dose of opioid medications or have had their prescriptions eliminated completely. As a result, eight out of 10 patient respondents also cited increased pain and lower quality of life as a result of this change. Some say they have considered hoarding opioids or buying them on the black market, and others also admit to having suicidal thoughts.
Gary says that his pain, which had hovered at around a 3 of 4 (on a pain scale) with proper medication dosing (manageable numbers for him), quickly skyrockets up to a 10 without the adequate medication.
Could the Guideline Be Flawed?
Some experts have recently started to echo what many pain patients believe. A report conducted by PPR, a Seattle-based public relations firm who was commissioned by the CDC to help the agency understand the impact of the guideline, advised the CDC take steps to better understand what pain patients are experiencing as a result of the recommendation. According to an article published on the Pain News Network (September 2017), the CDC has not yet responded.
In addition, a recent white paper authored by the Academy of Integrative Pain Management (APM) points out potential flaws in the equianalgesic dosing tables related pain medications to “morphine equivalent daily dose (MEDD)", (which is what the CDC uses to come up with its 90 mg per day opioid maximum). The paper questions the assumption that all opioids have the same potency and that all pain patients respond similarly to the same dose. It also suggests more research in order to determine if the guidelines are harmful to some patients.
Gary points out that these reports help validate what he already knows: that he and fellow pain patients are falling through the cracks of a system gone wrong.
Advice for Those in Pain
In the meantime, Mallick-Searle offers this advice for those who are suffering: “I think that it is of utmost importance for patients to establish a caring, trusting relationship with their treatment provider and have an open dialogue about their concerns,” she says. It’s also crucial for patients to be “open to alternative treatments that they may have not been interested in previously". Finally, the pain nurse encourages patients to better advocate for themselve. "Active involvement with patient advocacy groups such as the American Chronic Pain Association is a good place to start,” she adds.
For chronic pain patients whose medication has been reduced or eliminated without their consent, Forest Tennant, MD, DrPH, editor in chief of Practical Pain Management advises patients to file a complaint with their state medical board. For more information about the process, you can visit the Federation of State Medical Boards’ website. You can also access a directory of state medical boardson the Federations’ website. Watch Dr. Tennant's video, below.
Ask Dr. Tennant: “My Doctor is Cutting Back My Opioids – What Can I Do?” from Vertical Health on Vimeo.
Gary has vowed not to keep quite until he makes a difference for himself and others living with chronic pain. "What's happening is a terrible injustice," he says urging fellow patients to contact their legislators (state and federal) to convince the CDC to make the necessary changes to protect them from being the unintended victims of the nation’s war against drug abuse.
“The CDC guideline will cause more problems than it solves,” he stresses. “Some people will commit suicide as a result, while other normally law-abiding citizens will become criminals in an attempt to relieve their pain,” he says.
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