• Kaatje Gotcha

End the War on Pain Patients

In 2012, life was great: I proudly wore a white coat with a stethoscope around my neck and finally felt useful to humanity. Two decades earlier, as a stunt woman, my parachute did not quite open, and I landed on my sacrum (tailbone) at 70 mph, crushing the sacral nerves. I had lost two inches of my spine, fractured several vertebrae, and would spend a year in ICU, hospitals, and a spinal cord clinic. I was left with traumatic cauda equina syndrome, suffered from residual pain, and was left with a “sitting disability.” For my atrophied lower leg and foot muscles, I used leg braces, a cane or scooter and I sat on a padded office chair. I’ve schlepped pillows and camping mats with me ever since my skydiving accident. Frequently, lying down for a few minutes was the only way to deal with my disability.

As a Physician Assistant in primary care, I loved my job and providing a true provider-patient collaboration. I had ample opportunity to prescribe opioid medications. Responsibly, of course. In my toolbox, I had excellent interview skills, the State’s Prescription Monitoring Program (PMP), and a urine test. The PMP would let me know me if patients were doctor or pharmacy shopping, although it couldn’t take into account other states. A urinalysis would tell me if the patient was taking the opioids as prescribed, or diverting, or using other, illegal drugs, or medications that were not prescribed. Heck yeah, I even had my patients sign an Opioid Use Contract.

One patient’s husband worked for the Drug Enforcement Agency (DEA), and he told me one that opioids went for about 70 cents per milligram on the street, in 2012. However, I never assumed someone was gaming the system and tried to keep an open mind. Some patients did want me to refill their emergency room (ER) hydrocodone prescription, for complaints like a mildly strained knee. At that point, I would print out knee exercises instead. I always tried to understand my patients’ emotional and physical health and encouraged exercise and healthy habits (even if most days, I couldn’t prepare food so I ate LAY’S® Limón Potato Chips and gummi worms).

Another patient had just moved from Arizona, with a history of using 30 mg of MS-Contin, a long-acting morphine tablet, three times a day, plus another opioid, Percocet 10 mg instant relief (IR), one tablet every four to six hours for breakthrough pain. The patient was full-time employed, doing fairly intense labor, and was incensed when I wanted evidence of his “bad back.” The patient did not bring any records during his first visit, but he later returned with a lengthy health record — his pain deriving from five back surgeries, three of them revisions for the original surgeries.

I had never heard of “ultra-rapid” or “slow” opioid metabolizers² which affect adequate treatment, and still believed the Center for Disease Control (CDC) had society’s best interest at heart. The opioid crisis seemed far away, and I believed that did not affect my patients, or myself. Mistakenly, I thought there hardly would have been an “opioid epidemic” had medical providers only accompanied any opioid prescription with this warning: “Use your IR (instand relief) opioid medication when you truly have breakthrough pain, a 7–8 or higher, or it will no longer be as effective.”

Perhaps. But complicating matters was that opioid medications did seem to be prescribed for relatively mild to moderate pain, or in situations where acute pain would soon resolve. For example, to my patient with that strained knee, seen in a Colorado ER. In 1991, I’d fractured my lower leg above the ankle, after a car stunt gone awry, and wasn’t prescribed any opioid medication. The ER doc in Florida who applied the hot pink cast, from my toes to my knee, pointed me to a Walgreens to buy Tylenol (acetaminophen) for the simple, uncomplicated fracture.

Although I was in tremendous pain myself from the sky diving accident and crushed sacral nerves, I denied suffering from intractable pain. Yet I was battling worsening neuropathic (nerve) pain, as well as residual musculoskeletal pain from the sacral and vertebral fractures, on a daily basis. I made it through each workday by lying down on the exam table during lunch. Work gave me great happiness, but physically I had no energy left to cook, maintain friendships or even have a hobby.

That year I recall having to do five mandatory continuing medical education credits by the State on “responsible opioid prescribing.” This seemed ludicrous since I always looked at the PMP before going into the exam room. Especially with a patient that was on medications that fell under the Controlled Substances Act. As a non-contract employee, I also paid my own DEA license at $780 every three years for the privilege of writing controlled substance prescriptions. I was ticked off with the cost, but also with what I perceived as government encroachment on my medical decision making.

Sure enough, over the years, after the CDC Opioid Guidelines came out (which are voluntary, and not legally binding), I began to realize that there is no true opioid epidemic. There’s an epidemic alright, of people taking opioids with multiple medications and then adding alcohol and other illegal drugs on top. What we most certainly have is an alcohol epidemic, with 88,000 deaths annually, and this epidemic is starting to effect millennials. I blame those hipster beers with ridiculously high alcohol percentages, as millennials are dying of liver cirrhosis in record-breaking numbers.

Despite the ongoing alcohol epidemic, from 2012 to 2016, using opioid medication became synonymous with being a “drug seeker.” The “opioid crisis” narrative was perpetuated and fueled by mainstream media, whose culpability lies in using labels like “opioid overdose deaths” instead of the more appropriate “mixed drug intoxication.” True opioid deaths (opioid medications alone) range around five thousand deaths annually, according to Josh Bloom, writing for the American Council on Science and Health. New York City’s medical examiner’s office is unsurpassed when it comes to accurately determining cause of death: in 2016, 71 percent of all drug-related deaths involved heroin and/or fentanyl.

Looking at the numbers, most of the so-called “opioid deaths” seemed to be people who did not take their medication as instructed, if opioids were legally prescribed in the first place. Seriously, because who cooks their Fentanyl patch and injects it? Not chronic pain patients, who need slowly titrated medication to bathe, cook, work, take care of kids, or go to school. Patients were indeed dying from respiratory depression, caused by taking legal or illegal opiates. But how many of those deaths are suicides? If patients with severe pain, on a stable regimen, are denied access, they may turn to suicide, or illegal opioids like heroin, now tainted by illegal fentanyl. That is not an opioid crisis, but another iatrogenic consequence of the “guidelines.” The Law of Unintended Consequences never fails.

How was it that the CDC took advice from an anti-opioid advocacy group, Physicians for Responsible Opioid Prescribing (PROP) when constructing the Opioid Guidelines? PROP had lobbied Federal officials and the FDA for years, to change opioid labels. When they were (mostly) rebutted, PROP got involved with the CDC, behind closed doors. The Washington Legal Foundation notified the CDC in 2015, as in their opinion, the CDC broke the 1972 Federal Advisory Committee Act (FACA) law. Washington Legal Foundation states that a Core Expert Group, advising the CDC, conducted their “research” and “Draft for Opioid Guidelines” in secret, without input from pain experts, pharmocologists, or patient groups.

Dr. Jane Ballantyne (current PROP President) was part of that Core Expert Group and is notorious for her anti-opioid stance. Another Core Expert Group member is PROP executive director, and founder, Dr. Andrew Kolodny, who refers to opiate medication as “heroin” pills and proclaimed that “oxycodone and heroin have indistinguishable effects.” Yet you oughtn’t compare a 5 mg tablet of oxycodone to IV heroin, without qualifiers on potency. Dr. Kolodny, an addiction expert, doesn’t even distinguish between “plain” heroin, and heroin cut with fentanyl, which is 100 times stronger than morphine. About 80 percent of fatal overdoses are now due to illegal fentanyl. By muddying the issues of opioid dependence, opioid addiction, and heroin use with either false or incomplete statements, PROP also does a disservice to people who are addicted to heroin or illegal fentanyl.

Research has found that 75% of heroin addicts have a mental health illness, and 50% have trauma from (sexual) abuse before age 16, something that gets drowned in Dr. Ballantyne’s simplified narrative of “continuous or increasing doses of opioids [… ] can worsen a person’s ability to function and his or her quality of life. It may also lead to opioid abuse, addiction, or even death.” Like many others, I argue that (illegal) fentanyl, and indirectly, profound loss of hope, is the main driver behind the current “mixed use overdose” deaths.

Dr. Kolodny was Chief Medical Officer of The Phoenix House, an addiction center, at the time he helped draft the CDC Guidelines. PROP also avoids mentioning the Millennium saliva, or other DNA tests, to identify how individual patients metabolize opiate medication and that some are “ultrafast” metabolizers. PROP fails to mention opioid blood concentration measurements, no matter how imperfect. However, no one doubts the conflict of interest: PROP Board members are involved with grants from the CDC, addiction centers, medical device companies to develop an opioid tapering mechanism, and even consulted with law firms investigating lawsuits against opiate pharmaceutical companies.

PROP was originally funded by Phoenix House, one of many addiction centers that prescribes buprenorphine. PROP is currently funded by the Steve Rummler HOPE Network, another anti-opioid group that lists Dr. Ballantyne and Dr. Kolodny on the medical advisory committee. Dr. Kolodny admitted in a 2013 New York Times article titled “Addiction Treatment with a Dark Side” that as a New York City Health official, he lobbied on behalf of the buprenorphine pharmaceutical industry. He was quoted as saying, “We had New York City staff out there acting like drug reps [with $10,000 incentives -KG].”

Buprenorphine was the supposed miracle drug after methadone, but its known side effects include serious diversion, addiction, and possibly, lifelong treatment. Dr. Kolodny publicly promoted buprenorphine in various media outlets, despite evidence of buprenorphine overprescribing, pill mills, and overdoses. The true scale is not known, as most ERs and medical examiners do not test for the presence of buprenorphine. The CDC does not track buprenorphine deaths, despite a 2013 study that found a tenfold increase in buprenorphine-related ED visits, according to the Federally funded Substance Abuse and Mental Health Services Administration (SAMHSA). As “bupe” availability increased, so did diversion and overdose deaths.

Interestingly, that Dr. Kolodny promotes the idea that heroin and opioid medications are the same molecular compound. Actually, buprenorphine has a molecular profile that more closely resembles heroin, than hydrocodone. Dr. Kolodny indirectly claims that CDC Guidelines are effective, when the truth is that by the time PROP advised the CDC, prescriptions had already tapered off. This is evidenced in his statement as chief medical officer from a Phoenix House Q&A, dated December 2015: “It will take some time, but we’re already beginning to see a plateau in opioid prescribing.” Dr. Kolodny appears to take credit for a trend that had nothing to do with PROP, and he omits the fact that prescriptions are down since 2011, and yet overdoses are up.

Mainstream media occasionally, and accidentally, reveals the truth. CNN in 2018: “Fentanyl-related deaths double in six months; US government takes some action.” Then again, the echo of Dr. Kolodny’s statements, as reported by CNN: “The recent rise in popularity of these synthetics has been called the third wave of the opioid epidemic; the first wave was attributed to the overprescribing of painkillers like oxycodone and hydrocodone and the second to heroin. The drugs are all chemically similar and act on the same receptors in the brain.” Again, not one word about potency.

Few realize that when the CDC issued the Opioid Guidelines in 2016, there was inadequate research done ahead of time to determine the true cause of the rise in opioid-related deaths. There are no long-term studies on the effects of chronic opiate therapy. Very few, if any, pain management experts or pharmacologists were consulted to determine potential impacts on their practice. Neither veterans nor chronic pain patients were given a true opportunity to issue public comments to the CDC or any other Federal authority prior to the implementation of these new prescribing mandates. The CDC ended up targeting one of the most vulnerable groups, patients with intractable pain.

The CDC’s Guidelines also affect patients with cancer and patients who no longer receive cancer treatment because, unfortunately, both groups report similar pain levels. The guidelines allow the use of opioids during cancer treatment, but they are confusing when it comes to equally severe, post-cancer treatment pain. I fear this “opioid” crisis is far from over, and yet, trust me, this will go down as “reefer madness” in another hundred years. It is a manufactured tragedy that does real harm to patients with intractable pain. The “opioid” crisis also hurts human beings who suffer from heroin, opioids or other addictions by siphoning money, goodwill, and energy.

Few people realize that the CDC hired a PR agency to help sell the American people myths on the “opioid epidemic.” The agency, PRR, designed graphics to “educate” primary care providers that “one in four patients on opioids will develop addiction.” Even the National Institute of Health, another federal entity, estimates this to be 5 percent, not 25 percent. Another research team concluded in Pain Medicine that opioid therapy for chronic pain patients (note: in absence of prior or current drug abuse) resulted in a 0.19 percent incidence of abuse.

The language used by the media as well as PROP contributes to misunderstanding; using words like addiction, tolerance, dependence, abuse or opioid use disorder as if they mean the same, directs the casual observer to bias. It’s clear that PROP never was an independent, neutral entity advising the CDC, yet they ended up dictating federal policy, based on flawed evidence. Dr. Ballantyne, Dr. Franklin, and Dr. Kolodny in Politico.com in March 2018: “We agree with Satel that the answer is not to force millions of chronic pain patients to rapidly taper off medications they are now dependent on (Italics mine). But then, neither is the answer to absolve overprescribing for pain.”

I’m not a linguist, but in that essay, PROP uses the word “addiction/addicted” 16 times, and “dependence” twice. The CDC could have ensured that patients with severe to intractable pain (no such distinction is made) would not lose access to their medications. And yet, that is exactly what happened. Stable patients on long-term opioids were tapered against their will, as the CDC Guidelines state it is undesirable to titrate above or equal to 90 morphine milligram equivalent daily (aka MME/day). But this was meant for opioid-naive patients, not those on long-term opiate therapy. Primary care providers, who were forced to follow these Guidelines, either stopped prescribing opioids altogether or forced patients to rapidly taper to below 90 MME.

Dr. Ballantyne is correct in her remarks that it isn’t realistic to expect zero pain levels, especially for acute pain that is expected to resolve quickly, like a sprain or an uncomplicated fracture. But people with severe to intractable pain are condemned to a world of suffering. Recall my patient with the five back surgeries? I wonder about him. He was working full time, on 180 MME a day, but in his mid-fifties, arthritis would worsen soon. My own story did not end well; I ended up with yet another spinal cord lesion, a benign hemangioma at chest level, which causes “central neuropathic pain syndrome.” My old cauda equina syndrome morphed into “severe, chronic adhesive arachnoiditis.” This is an incurable, intractable, progressive neuroinflammatory disorder whose pain is considered on par with having terminal cancer pain. Still, I try to make the best of it, see my essay, On Being Bedbound.

The CDC and PROP came for me: after using opioids exactly as prescribed, and less than 30 MME daily, my primary care clinic was forced to stop my opioid prescription, and that of all patients. I was not accepted in any pain management clinic, in an urban area of almost one million. Pain clinics here no longer provide “medical management,” yet perform epidural steroid injections ($3000 a pop), which may have contributed to, or worsened my adhesive arachnoiditis syndrome. I’m lucky to live in an urban area, where the academic hospital’s pain team took over my prescription.

But what about elderly and impoverished patients, or those in rural areas? PROP and the CDC claim primary care providers “overprescribe” and are responsible for most of the opioid prescriptions. But they fail to publicly acknowledge that pain management clinics no longer accept patients. This epidemic of undertreated patients will become known as one of the cruelest moves by a Federal agency on an already compromised population. I do feel for teenagers and adults who become addicted. Yet there ought to be a different, more sensible approach towards legitimate, chronic pain patients who need opioid medications, as well as people who develop a substance use disorder, who deserve our help and sympathy.

It is a conundrum of extraordinary proportions. At a time when managed care and Electronic Health Records dictate the length and quality of an office visit, there is less and less time to sit down and connect with a patient. Not just with chronic pain patients. Medicine and society would benefit greatly from the extra time clinicians deserve, to encourage exercise, eat healthier, lose weight, stop smoking and assess if a patient needs other support, like therapy.

In my opinion, it is loneliness, the feeling of not being connected to humanity in a meaningful way, combined with economic hardship, that leads to unhealthy lifestyle choices, as witnessed by the Rustbelt being hit hardest. Research shows that rats who were offered spring water or water laced with heroin, choose heroin. When those same rats were given ample toys, space, and other rats to play and have sex with, they did not choose the heroin laced water. That’s right, happy rats don’t need no heroin!

It cannot be denied that in previous decades, pain was both undertreated, and opioid medications prescribed for relatively minor, self-resolving aches and pains. Forget for a moment, the narrative that places blame on overprescribing, the opioid manufacturers, or the pharmaceutical distributors that, for example, flooded impoverished communities like those in West Virginia.²³ Forget all that, and focus on what is going on. Ultimately, patients with intractable pain pay the price of ignorance by scientists, journalists, politicians, and laypeople alike.

For this humanitarian crisis, there are no perfect answers. For example, as Red Lawhern, Ph.D and prominent pain advocate, communicated with me (12/3/2018): “there is promise in genetic testing but hasn’t yet been fully reduced to routine practice and may not be covered by insurance.” Luckily my DNA testing was covered, on the condition it tested for depression. I also discovered that ketamine infusions help me most, as explored in my book, The Queen of Ketamine. Sadly, amidst the opioid paranoia, non-invasive alternatives like ketamine infusions aren’t mentioned for neuropathic or intractable backpain, which often has a neuropathic component. Research also shows that adding an anti-seizure medication to an opiate mediation provides better neuropathic pain contral, with less morphine.

In the end, I don’t think Tai Chi, Tylenol and Cognitive Behavioral Therapy is going to cut it for meningeal inflammation or other (neuropathic) pain syndromes. I believe the tide is turning. It will take time, and in that time, patients with intractable pain will choose to end their lives. But we are not alone, and it helps to know that courageous voices, notably the Alliance for Treatment of Intractable Pain, are speaking up for us. The print and online magazine Reason has long been a voice of, well, reason. As Red Lawhern stated in a must-listen November 2018 radio interview, “We must address underemployment, socioeconomic despair and hopelessness which are a vector for addiction. And end the War on Pain patients.”

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