Why We Must Not Let Addiction Hysteria Kill Off Zohydro
As a chronic pain patient, a misdirected crusade against opioids has significantly added to my suffering. I'm even afraid to ask my doctor about taking Zohydro. Let's go with the science, not the scare tactics.
People with addiction may use opioids to escape from life, but pain patients use them to participate in life. My chronic pain from Ehlers-Danlos Syndrome is invisible. I appear as athletic and competent as ever, but under that facade my body has been falling apart for decades.
EDS is due to a genetic defect that impairs the production of collagen, which results in defective connective tissue that isn’t sturdy enough to do its job. Since all tissues of our bodies (even bones) are made with or held together by connective tissue, EDS can impair all body parts. Because it’s genetic there is no cure; only the symptoms can be treated.
The pain arises from a constant series of small joint and tissue injuries that become cumulative. I hurt both from movement and lack of movement, so there’s no avoiding pain. Of course doctors were skeptical when I came to them with just descriptions of my pain—because soft tissues don’t show up well on standard medical scans, the findings were always unremarkable.
Before my pain became chronic and overwhelming, I was an endurance athlete (running, riding horses, riding bicycles), so I was tough and no stranger to normal pain. I believed in “no pain, no gain.” But my pain from EDS is different: more pervasive, persistent, disabling and totally out of my control. No one without chronic pain should presume to understand what it’s like to live with it and make judgments on how much suffering a person should endure. This is a basic human problem: It’s almost impossible to empathize with a situation that’s completely foreign to us (imagine blindness).
Since 1995, I’ve been managing my pain with opioids: extended-release OxyContin (oxycodone) to lower the volume of the constant background pain and intermittent Vicodin/Norco (hydrocodone) for “breakthrough” pain, fluctuations or incidents of more intense pain. I, and the many others like me, am evidence that long-term opioid therapy definitely works, even though it has not been possible to design an ethical scientific experiment to prove it.
Advocacy organizations, fueled by the righteous anger of former addicts and parents whose children have overdosed, have launched a misdirected campaign against Zohydro as a second “Oxy epidemic” in the making.
Last fall, the FDA approved a new opioid painkiller, Zohydro, an extended-release hydrocodone medication intended for chronic pain patients who can’t use other long-acting opioids like OxyContin. The problem with other hydrocodone formulations, like Vicodin and Norco, is that they contain acetaminophen (Tylenol), which has been found to cause liver damage with the prolonged high doses needed for chronic pain control. In addition, they are all instant-release, lasting only four to six hours and therefore requiring multiple doses daily. Zohydro addresses both of these issues: There is no acetaminophen and it is a timed-release capsule that lasts up to 12 hours.
For me, Zohydro would be a good alternative to the OxyContin I currently take because hydrocodone seems to provide me better pain relief than oxycodone. I could use long-acting Zohydro for my consistent pain and immediate-acting Vicodin for pain flares, but I’m afraid to even ask my doctor about it. I don’t want to make any changes to my opioid regimen that could draw attention to me. Questions about Zohydro could arouse suspicions of “drug seeking” and then some clinic administrator could arbitrarily decide I shouldn’t have opioids at all.
This absurd situation is the result of an anti-opioid hysteria whipped up by the media and an army of self-proclaimed drug warriors. Advocacy organizations, fueled by the righteous anger of former addicts and parents whose children have overdosed, have launched a misdirected campaign against this new drug. Instead of focusing on the addiction that caused their losses, they are spreading alarm that a second “Oxy epidemic” is in the making. A complex medical issue has been turned into a dramatic legislative circus, with some governors catering to their frightened constituents by trying to block Zohydro sales in their states. Attorneys general in more than half the states are joining the drug warriors to demand that the FDA withdraw its approval. They are asking for a legal change based not on scientific evidence but on the mere possibility that the drug might be misused. That’s a scary precedent.
After consistent bombardment by this hysteria, any discussion about the pain-relieving, sanity-preserving benefits of opioids and their legitimate use now elicits knee-jerk resistance. Especially because it was approved without misuse-deterrent features, which have been of limited usefulness, the FDA’s approval of Zohydro has added fuel to the opioid “use vs. abuse” debate. I’m incredulous at how many people, even doctors, believe that addiction is an inevitable consequence of opioid therapy. This is simply not true. These are the facts: Only one-third of people find opioids pleasurable; less than a quarter of those who take opioids recreationally get addicted; and a mere 1% or 2% get addicted when opioids are taken for pain.
Unfortunately, the current panic has obscured these facts. In this media echo chamber, there is little concern that much of what passes for factual information about opioids and addiction is fraudulent. Almost anyone with the slightest experience with drugs and addiction can sell themselves as an “expert.” The media trot out a senator or advocate or parent to tell horrifying stories of addiction and pontificate on the evils of opioids. Scientific standards, pain-medicine expertise and the voices of pain patients do not apply. The negative stereotype of anyone taking opioids explains why legitimate patients don’t stand up to be counted, but hide and remain silent.
Even as a high-functioning tech worker in Silicon Valley, my opioid prescription put me in the crosshairs of the drug-war bureaucracy and media. Like virtually all opioid users, I was lumped together with reckless teenagers, drug dealers and the rest.
Earlier on the day that the FDA announced its long-awaited decision on Zohydro, the agency also announced that it would recommend moving drugs like Vicodin to the restrictive Schedule II class of medications. This would mean that doctors could no longer call in prescriptions to pharmacies and patients could no longer get automatic refills, adding another cumbersome (and most likely ineffective) layer of regulation. It only creates more roadblocks for legitimate doctors and patients trying to follow the rules. However, criminals don’t follow the rules, and they’ll manage to circumvent these restrictions, just as they have for OxyContin (which is already Schedule II). Only someone who has no understanding of addiction could believe that creating this restriction, which uses more scarce physician resources and requires more travel, money, time and paperwork from patients, will put a dent in the misuse of narcotic painkillers.
Zohydro would be a good alternative to the OxyContin I currently take because hydrocodone seems to provide me better pain relief than oxycodone, but I’m afraid to even ask my doctor about it.
The manufactured crisis around Zohydro makes little distinction between recreational users/addicts and pain patients, and neither do these new regulations. But all of it has profoundly negative effects in the lives of people with chronic pain and in how we are treated by doctors, pharmacists other healthcare providers and, not least, the general public.
The regulations add another monthly burden for us: having to make an appointment, drive to the doctor to get the prescription, then drive to the pharmacy, and wait and wait. Standing around for up to an hour with sharp back pain not only is torture but also gives the pain from driving a head start on my way home.
And these days there’s no guarantee an opioid prescription will be filled. Pharmacists have taken the initiative in profiling patients, deciding who is and isn’t an addict, and denying them service as they see fit. They feel justified overriding the doctor’s orders if they believe someone is an addict. Some pharmacy chains have been punished for previously allowing too many opioids to be dispensed, so they now have quotas on their shipments. On the 12th of one month, I was told they didn’t have my pain medication in stock and couldn’t order any until the next month.
Because they control my access to pain relief, my doctors have complete control over my quality of life. When my original prescribing doctor retired, I entered a nightmare. My condition changed from being a well-cared-for and still high-functioning pain patient to a depressed, angry and desperate “drug seeker.” I tried one expensive doctor after another, and most believed I was malingering. They were so sure that their specific treatment would work that when it didn’t, they took it as proof that I wasn’t in pain but only wanted opioids. The harder I tried to persuade them that they were wrong, the more I sounded like a “drug seeker.”
Pain puts me at the mercy of healthcare providers. Anyone who has the ability to add something to my medical chart can destroy my chances for getting pain relief in the future with a little comment about “drug seeking” or “non-compliant patient” for refusing yet another series of scans and injections that have already proved ineffective for me.
This kind of rejection is common for pain patients. I learned that I’m not the only one who ends up crying out in the car after pain management appointments. We can be traumatized by callous attitudes—suspicion, hostility, denigration, belittlement and scolding—from pain doctors. Such rejection is almost unheard of in other branches of medicine, but is accepted from pain doctors because they have to deal with some proportion of liars, thieves and criminals among their patients. But why should other people’s behavior determine my access to the only pain relief that works for me?
I always assumed that opioids weren’t a permanent solution, but experience has shown me that without them I would have to spend the rest of my life on the couch. Aging magnifies the damage from EDS, so my pain has worsened over the decades, with the result that I have had to increase my dosages over time. (I’m still below what’s considered “high dose” and have never taken more than prescribed.) Some critics insist that this is the dreaded effect of tolerance that will eventually make me immune to painkillers, but age-related increasing pain is just as valid an explanation. Swinging a leg over my bicycle used to give me a quick pinch, but now a painful muscle spasm stops me.
The public has been so misled by the media’s anti-opioid hysteria that many believe that any opioid is addictive from the first dose and therefore all pain patients are instantly addicts.
I have been investigating medical and alternative treatments for decades and have relied on opioids for the last 19 years while waiting for a cure that never materialized. I’ve tried counseling, physical therapy, over a dozen different medical specialists and their medications, pain workshops and alternative treatments (ayurvedic, chiropractor, acupuncture, yoga, Pilates, massage, biofeedback, meditation). None of them kept my pain from becoming disabling.
I went to a world-class pain management center, hoping to find alternative ways to manage my condition. Instead, after a single consultation, I was urged to go into an addiction recovery program. At this famous institution, instead of being introduced to the latest treatment modalities, my long struggle with pain was labeled as an addiction. Insisting that addiction was definitely not my problem was labeled “denial”—a circular argument—and I was told to stop taking my opioid pain medications. This simplistic “just say no” approach was a terrible letdown. I had hoped to learn other ways to control my pain before I stopped using the only palliative I have, not the other way around.
The public has been so misled by the media’s anti-opioid hysteria that many believe that any opioid is addictive from the first dose and therefore all pain patients are instantly addicts. The reality is that taking opioids recreationally has different physiological and psychological effects than taking them for pain. Pain uses up all our body’s own feel-good, pain-relieving chemicals (endogenous opioids), creating a misery-inducing deficit and allowing the pain to increase without limit. Taking extra opioids for pain helps restore the normal balance. But when taken without pain or in doses higher than necessary, these feel-good chemicals are boosted to excess, inducing euphoria and a craving for more.
Because of this opioids-equal-addiction assumption, I hid my use of them until recently, even from friends. I was mortified when a co-worker once noticed a Vicodin tablet I had dropped between my desk and the wall. Before I could say anything, she picked it up and handed it to me, saying, “Here’s your Vicodin,” with a little smile. I braced myself for a visit from HR that never came. If I had been forced to explain my use of narcotics at work, where I was still functioning normally, I was afraid I’d be disbelieved, blacklisted as an addict and have my career ruined.
Public opinion should not be allowed to drive medical or scientific decisions. The recent focus on opioid addiction and Zohydro in particular completely overlooks that fact that opioids have been serving a critical purpose for thousands of years. Opioids are not the problem—addiction is. But addiction is a complex medical and social issue, and rather than treat it, it’s much easier to demonize a substance.
I have struggled to maintain a normal life. I had to give up hiking, running, racing horses, 100-mile per day bike rides, yoga, swimming, multi-day bike camping trips and working a full-time job. And I know there will be further losses and pain with the normal aging process.
Zohydro is only one of many different opioids on the market and singling it out for special treatment will not stem the tide of addiction. Addiction is in the person, not the drug, and desperate addicts will simply find some other opioid, like heroin, to feed their craving. We pain patients don’t have that option.
Until she was disabled by EDS and fibromyalgia, Angelika Byczkowski was a high-tech IT maven at Apple and Yahoo. She lives in a cabin in the redwood forests of the Santa Cruz Mountains with her husband and two four-legged kids. Her essays have been published in several healthcare blogs, including Stanford’s Scope, Kevin MD and Occupy Healthcare. Her blog is here.
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