They are people like you and me and your next-door neighbor
August 19, 2012 12:00 PM
By Jennifer Matesa
Arriving at this summer's Western Pennsylvania Prescription Drug Abuse Summit, I walked through a phalanx of government people, medical practitioners and cops. In my silk shirt and hipster spectacles, I fit in as a "professional." For all anyone knew, I might have been a therapist, a nurse, a doctor.
But I'm not a practitioner or a cop. I'm a writer. I'm an artist. I have two degrees. I'm the mother of a 14-year-old boy. And I'm an addict.
Looking around at the crowd, I knew I was seeing other addicts, however quiet they were keeping it. The common estimate is that about 10 percent of the general population has alcoholism and 5 percent have drug addiction -- and that doesn't count all the other addictions: nicotine, food, gambling, sex, you name it.
"My phone has gone radioactive since we announced this [drug] summit," U.S. Attorney for Western Pennsylvania David J. Hickton said. "That's because virtually everyone knows someone touched by this problem."
"This problem," as they kept calling illicit prescription drug use, took off about 10 years ago after The Joint Commission that accredits health care organizations began to require them to assess pain as the fifth vital sign, along with temperature, blood pressure, respiration and heart rate.
The commission's pain standard broke down a long-standing cultural hurdle in the medical community that dictated that opioids were to be used only for cancer sufferers and dying patients. Now, pain was determined to be a disease in and of itself, and a new crop of pain-treatment specialists sprang up, declaring war on non-cancer pain. Arthritis, peripheral neuropathy, degenerative disc problems, spinal stenosis, temporomandibular joint syndrome, migraine, cluster headache, chronic daily headache -- 45 million people, the experts said, were suffering from some form of pain that could be treated with opioids.
As a result, "this problem," said Dr. Neil A. Capretto, medical director of Gateway Rehabilitation, "has never been worse in our area." Sixty-five to 70 percent of accidental drug overdoses in Western Pennsylvania involve prescription drugs, he said, and for every overdose there are 461 "nonmedical users." Last year, some 200 people in Allegheny County and 50 in Washington County died of drug overdoses, mostly from prescription painkillers, Mr. Hickton said.
But what exactly is "this problem"? The most common term heard at the meeting was "drug abuse."
I thought about how I'd used and abused my drugs. All of them had been legal painkillers -- codeine; morphine; OxyContin; hydrocodone, the active ingredient in painkillers such as Norco and Vicodin. After six years of "opioid therapy," as it was called, I detoxed in 2008 from a high dose of fentanyl prescribed for the migraines and fibromyalgia that have given me decades of pain. Somewhere along the line, I had lost control over my drug use.
All the drugs I took were prescribed by a physician. I never "doctor-shopped," bought or sold a drug "on the street" or took an "illicit" drug -- not even pot, despite the fact that I first smelled weed coming from the back of my rural Plum Borough school bus when I was in fourth grade. I've never shot or snorted a drug. I've smoked parts of maybe three cigarettes. Yet I eventually lost control of my ability to take my medication responsibly.
In both medical and law-enforcement terms, this is called "abuse." Taking a medication in any way not as prescribed rightly qualifies. And the attendant psychological narrative, the compulsive use of drugs despite harm, is called "addiction."
Could I have foreseen the risk of addiction? I don't know.
In 2002, I was writing for a philanthropic foundation about health policy, researching the Joint Commission's new pain-assessment standards, when several of my high-level sources who had helped craft those standards suggested I needed to go to a pain clinic to get treatment. They assured me that patients who took opioids for pain ran an infinitesimal risk of addiction. The number quoted to me? -- a risk of one one-hundredth of 1 percent. That assurance turned out to be based on flimsy evidence.
More addicts, more lies
The simple reality that has emerged over the past 10 years is that if physicians treat more types of pain with more opioids, more people will become addicted. As one ER nurse practitioner remarked at the summit, "Doctors know how to get patients on these drugs, but they have no idea how to get them off."
For the sake of helping people who need help -- both those who have pain and those who have addiction -- we need to clarify our language. Under the catch-all term "prescription drug abuse," we're really talking about two things: diversion of drugs, which is a crime, and addiction, which is an illness.
Conflating the two problems into one brands all addicts as criminals, which in fact is the attitude of some physicians, most law enforcement and many unrecovered addicts. No matter where we've bought or how we've taken our drugs and alcohol, we must be criminals. It's an attitude evidenced (perhaps unconsciously) by Robert L. Hill, chief of the Drug Enforcement Administration's Pharmaceutical Investigations Section, when he spoke at the summit about the people who lined up inside one of Dr. Oliver Herndon's three West Mifflin waiting rooms or those who flock to Florida pill mills: "I hear you talking about patients," Mr. Hill told the audience, "but these people are not patients, they're customers of these drug dealers."
"These people," I wanted to tell him, look like me. They look like you. They come from all races and socioeconomic classes, from all ages and both genders. Even if they don't have an official diagnosis that calls for these medications, they're driven by another illness that's poorly understood and harshly stigmatized in our society -- in part because of the lies addicts tell.
It's an old joke: "How can you tell an addict is lying? Her lips are moving."
Deception and denial are sentinel features of active addiction. Addiction leads people to commit crimes and to lie to loved ones and practitioners -- not to mention to themselves -- in order to satisfy the illness's obsession with chemicals or behaviors that deaden or otherwise alter feelings. And it's not just people addicted to the "hard stuff" who are in denial. There are millions of people equally addicted to legal substances, including but not limited to alcohol and nicotine.
Lung cancer kills 160,000 Americans each year, more than prescription painkillers and, despite the fact that it kills far more women than breast cancer, it gets much less attention. My mother, who died at 58 of lung cancer, never had to lie or commit crimes to buy her drugs, but the illness drove her to deception in myriad ways, not the least of which was to ignore her health. She smoked until the last weeks of her life and hid her cigarettes the way an alcoholic hides bottles or an addict hides a stash.
Those outside of the illness of addiction see the crimes and lies and conclude that "these people" must be morally depraved: thus the long-standing and persistent cultural conviction that addiction is a failure of willpower and morals. It can be tempting for physicians to take the lies personally and turn against their patients in anger.
Having lived with many people addicted to various drugs, including both my parents, I understand this temptation. After all, if we addicts respected you, wouldn't we tell you the truth?
Well, hell -- in active addiction, we can't spot the truth if it falls on us, which it often does. Distortion of reality is part of addiction. As the late author David Foster Wallace, himself a recovering alcoholic and nicotine addict, once said, addiction is the only illness that tells us we're not sick.
Social stigma throws up additional disincentives for an active addict to face the truth. For several years I was reluctant to admit to my physician that I was having a terrible problem with my medications: I knew if I mentioned the A-word I would be kicked out of the practice into a psychiatric hospital -- thus being forced to deal not only with the complications of drug withdrawal but also with I didn't know how much debilitating pain. Call me proud, but I also couldn't bear to see the look in the clinic staff's eyes when my chart was labeled with the Scarlet A.
In the end, after seeing my father die at 68 of gastrointestinal cancer that was untreatable because of his severe alcoholic cirrhosis, I decided I had to get help. I was able to hire a physician to manage an outpatient detox for me. I was lucky -- not everyone is so fortunate.
Facing the truth
Dr. Capretto of Gateway told me it's hard to tell how many Pennsylvanians need addiction treatment and can't get it, but, according to a report from the Pennsylvania Recovery Organizations Alliance, in 2009 more than 800,000 people in our state couldn't get treatment because of financial constraints. Those who want to get sober who have neither the cash nor insurance to cover medically supervised detox and those on Medicare -- which, unbelievably, does not pay for treatment centers -- have to sweat it out on their own, a dubious and sometimes risky proposition, especially if they've been taking popular sedatives such as Xanax or Ativan, or even alcohol, withdrawal from any of which can cause life-threatening seizures if not monitored.
I'm not suggesting that society tolerate dishonesty or criminality. My point is that those caught up in addiction usually can't recognize that they're being dishonest. Instead of censure and punishment they need help healing from "this problem." Those who love people who are addicted also need help understanding addiction, so they can learn to protect themselves and to recover from the prolonged damage it can cause in families and communities.
Finally, we need to learn how to talk sensibly with our children about addiction prevention. Regina Labelle, chief of staff in President Barack Obama's Office of National Drug Control Policy, told the summit audience, "It's hard to talk to kids about prescription drug abuse."
But why? Kids are imaginative and intelligent creatures, and metaphor and story always work well to explain tough subjects. In my experience, speaking to them about addiction is a matter of letting them know that an internal switch exists inside the body and mind that gets flipped once we're exposed to chemicals or behavior that change or suppress one's feelings. With greater and more frequent exposure to drugs and alcohol, people with a genetic predisposition to addiction run the risk of flipping that switch permanently. Once the switch is soldered to "On," it can never be turned off. So it's important for kids to learn to deal productively with feelings and to be extremely careful about their exposure to these substances and behaviors.
I've been talking to my son about this disease that runs in his family for three years. He understands that when he goes to high school this month, he needs to be especially alert about drinking and drug use.
I'm not too worried. He's a competitive soccer player who, when injured, is vigilant even about how much ibuprofen he takes. He knows substances and behaviors can change feelings. He knows addiction can kill. So far, he wants to experience life as it is.
And this part of the message is equally important, and often forgotten: If the switch gets flipped, it's important to get help, no matter what it costs, and sooner rather than later. Effective help exists, and it saves lives.
Jennifer Matesa runs a popular blog about addiction and recovery called Guinevere Gets Sober (guineveregetssober.com), writes about addiction for The Fix in New York City (thefix.com) and speaks to professional and lay audiences about her family's experience with addiction. She also is the author of two books of nonfiction (email@example.com). First Published August 19, 2012 4:00 AM