My mother’s pain has hovered over my entire life. As a child I heard her screams at night, accompanied her to hospitals, watched her careful pill counting with mounting anxiety as the end of the prescription approached. I saw how some people recoiled from her frantic energy in emergency rooms and on the street. Multiple sclerosis is a disease that, among other things, gradually wears away the insular lining of your nerves, leaving you a bundle of frayed misfiring signals. Through years of trial and error she has managed to finally find some relief from her pain with an extremely powerful drug that’s now becoming the focus of national attention.
The narcotic fentanyl has been in the news recently, and became even more scrutinized after Prince’s death, which was ruled an accidental overdose caused by the drug. Close friends of the musician, including Sheila E, confirmed that he’d begun taking Percocet to coincide with hip replacement surgery in 2010. On August 22, it was announced that pills found at Prince’s Paisley Park mansion labeled as hydrocodone were in fact fentanyl, leading to questions about whether Prince obtained the pills from an illegal manufacturer, or a pharmaceutical company made a serious mistake.
In July, Chaka Khan voluntarily entered a rehab facility to treat her own addiction to fentanyl, saying in a statement that she was motivated in part by Prince’s loss. Because of these high-profile users, the drug has inspired a flurry of panicked coverage, including explainers on what fentanyl is, with dozens of headlines describing how heroin is being mixed with the prescription opiate for illegal use. There’s People’s article with a headline, “All About Fentanyl, The Drug That Killed Prince and Is Sweeping the Nation.” NBC News titled its coverage, “What Is Fentanyl? The Drug That Killed Prince Has Killed Thousands Of Others.” In a short documentary released this February, Fusion called it the “serial killer of drugs,” after a rash of illegal users in Massachusetts overdosed on it. In the accompanying article, reporter Rob Wile wrote, “The fentanyl situation is the product of the larger problem of the overprescription of, and easier access to, painkillers and prescription opiates.”
But how accessible is fentanyl to the average pain patient who legitimately needs it? The Drug Enforcement Administration issued a warning about fentanyl overdoses in the U.S. being on the rise in March of 2015, with Administrator Michele M. Leonhart saying, “Often laced in heroin, fentanyl and fentanyl analogues produced in illicit clandestine labs are up to 100 times more powerful than morphine and 30-50 times more powerful than heroin.”
Leonhart is talking about the use of illegal drugs produced in unregulated laboratories, yet accidental overdose on a fentanyl/heroin melange is often conflated with the legal use of prescribed and needed medications. Many patients who use fentanyl are in palliative care, receiving pain medication to deal with cancer. That’s what it was designed for, and many critics say that the drug is misused on people who are not experiencing breakthrough cancer pain. My mom, Pam, doesn’t have cancer, but she has been living with pain her whole life. I asked her to list her medical history for this story, a history that has been raising the eyebrows of skeptical doctors as far back as I can remember:
“Everything I have is one thing that leads on to the next... It started with scarlet fever as a baby, I was nine months old. Sometimes they say that’s a precursor to Multiple Sclerosis. Then, when I was eight years old I had osteomyelitis, and I was in a body cast and I had my right hip removed practically, and was told I’d never walk again, but I decided I would, and I did. Then when I was 21, I had encephalitis, or maybe some people say it was brain stem MS, and I went into a twilight coma and I was told when I got out that I probably wouldn’t walk again either. But I did.
“And then, shortly after, at 24, I was in the hospital and they didn’t know, but said it was probably MS, finally. I’ve since had four knee operations and an emergency c-section [writer’s note: that’s me!] that had me hemorrhaging with tubes in for three or four weeks to drain the blood out. And I have something called bilateral optic neuritis, which is a pain in my eye, I wake up in the morning and I have to keep one eye closed because it hurts so much ‘til after I’ve had a couple cups of coffee. Is that pathetic enough yet?”
She laughs.
My mom started taking fentanyl almost 15 years ago, but only after a long, dangerous ordeal. In 2001, the medicine that had been helping her with her pain nearly killed her. She’d been taking Percodan, a yellow pill that combines aspirin and oxycodone, which she broke in pieces for consumption in order to ration her relief for the day. Pam says she’d been taking Percodan for more than five years when she began to have severe pain in her stomach. Visits to the ER resulted in further prescriptions for the same drug. She says, “I told my doctor about the pain and he upped my prescription of Percodan and doubled the amount I was taking per day. I went to a stomach doctor and he sent me to the emergency room, but he also knew I was taking Percodan.”
For some reason, none of the many doctors my mother saw made the connection from her pain medicine to her new pain. The aspirin in Percodan can cause severe stomach bleeding and ulcers, which is exactly what was happening inside her. One day, she was expecting a friend to come by for lunch, but as he arrived she was beginning to feel very strange. He told her she passed out, then briefly became conscious and didn’t recognize him. Then she started vomiting blood.
After getting a call, I ran to the hospital to meet her. I vividly remember pushing her in a wheelchair to the restroom and watching with extreme annoyance and amusement as she checked her hair in the mirror, hoisting herself up to catch a glimpse in a woozy automatic gesture towards vanity. Soon after she was vomiting blood on the floor again, to the visible frustration of the ER’s janitor, and was rushed into surgery. Multiple procedures saved her life, but the road to recovery was blockaded by her continued need for pain medication that wouldn’t aggravate her severe ulcer.
My mom’s experience paints one picture of how complicated treatment for chronic pain syndromes can be, but as a patient her understanding of how doctors make decisions is somewhat one-sided.
Dr. Rob Hansen has been practicing pain medicine for over 25 years in his private practice in Virginia. His practice is dedicated specifically to pain relief and management, and he knows all medications, including fentanyl, inside-out. In those 25 years, he has seen the shifts in cultural acceptance of medical opioid use. When I asked in a phone call about the recent panic over fentanyl, he said, “Pendulums swing where people overprescribe, then they swing the other way where they under-prescribe. Now we’re seeing this huge swing where things are way out to the side and people are saying, ‘Oh my god, opioids are bad, no one should have opioids.’ That’s ridiculous.”
I also spoke with Dr. Herb Malinoff, who has been in private practice since 1999, treating both people with chronic pain syndrome and people with addiction. Dr. Malinoff agreed that fear of drug use misdirects the real issues around pain treatment, saying, “Everyone reads the newspaper, you know how that works. When a high-profile person dies from a drug overdose, it always gets everyone’s attention, for good or bad... Sadly, the legal system is a bad way to package medicine. When lawmakers start practicing medicine it’s a very bad idea.”
Both doctors agreed that in many instances opioids are overprescribed, for example, giving a teenager a prescription for 90 Vicodin after getting their wisdom teeth out. Dr. Malinoff said that, yes, some people who use opioids may have addictive personalities and become hooked, while others may become physically dependent and vulnerable to withdrawal if separated abruptly from the drug, but they are not addicts. And still others need medication simply to function, because their pain is so bad. Sadly, all of these people tend to be grouped together, and legislation around opioid use is frequently designed to deal with illegal use in ways that make legal and necessary use extremely difficult.
According to Dr. Hansen, many doctors are afraid to prescribe opioids, period: “Doctors read the newspaper. Doctors watch the televisions. Doctors hear every day about the epidemic of opioid use in this country. And they say, ‘Whoa, I don’t want to get in trouble... here’s the simplest solution, I just won’t prescribe the stuff anymore.’”
Dr. Hansen believes that fewer and fewer primary doctors are willing to care for patients experiencing chronic pain, fearing regulatory agencies will shut them down for prescribing opioid medication. As a result, he says, “We’re seeing a lot of pain go untreated.”
Finding a medication that helps with your pain and still allows you to live a normal life is complicated. Dr. Malinoff explained, “There are many types of reactions to opioids. One person could take a medication and not feel much at all. Another person might take something and feel completely looped out. Most patients are science experiments. Because there are other medications involved, and few people take them how they’re prescribed. It’s very difficult. I saw a patient the other day, she was on 14 different medications, including pain medication. I asked, ‘Do you know how these medications react when they’re together? Hey, neither do I!’ Because the permutations and variables are so vast.”
Since my mom has been trying to find a functional medication for her pain most of her life, she’s certainly felt at times like a science experiment. As Dr. Malinoff said, what works for one person may not work for another. My mother told me she was once prescribed methadone, and a half dose made her feel and act so loopy that my childhood self refused to walk down the street with her. Demerol doesn’t relieve her pain, it just makes her not care about it, or much else. With fentanyl, she says, “It was incredible because I felt pain-free. I’d never felt like that. I’d felt more, like, stoned... I still had clarity of mind, but all the distraction you have from being in pain, it was just not there.”
None of this is to say that fentanyl isn’t a dangerously powerful drug. The FDA has labeled it a Schedule II drug, meaning it has a high potential for abuse. Schedule I drugs ares unapproved narcotics, things like heroin and ecstasy. Morphine, another schedule II drug, is the gold standard for pain medications, and all other pain meds are compared to it, as measured in milligrams. Fentanyl is measured in micrograms, coming in 25, 50, 75, 100 microgram patches. (There are a thousand micrograms in one milligram.) The American Academy of Occupational Medicine says that anything above 50 milligrams “morphine equivalent” a day is the recommended limit for prescription. A 25 microgram patch of fentanyl, the lowest dose you can prescribe, is equivalent to 90 milligrams of morphine.
In addition to affecting opioid receptors, opioid drugs also affect our respiratory center, suppressing our body’s unconscious directive to breathe in and out. This is how most people die if they overdose. People also develop a tolerance to it fairly quickly, which leads to upping their dose and increasing the danger. Dr. Malinoff told me lots of things can cause overdose to a patient on fentanyl, like: “If you take too much by accident, if you mix it with other drugs, even if you get a respiratory infection. It often happens with cigarette smokers.”
My mom says that she is currently prescribed the highest dose of fentanyl available. The drug is delivered via a patch that is designed to last for three days, with fentanyl “lollipops” for breakthrough pain. Contrary to how fentanyl is presented in the media, flowing like a river into people’s hands, getting a prescription for it is pretty complicated. A month’s worth of fentanyl would cost her about $12,000 without insurance. If she wants her prescription covered, she must obtain a “prior approval” through her doctor. It was once something that could be done over the phone, but now must be communicated via fax. At first, a prior approval would cover a month’s prescription; now it’s a process she goes through every ten days, as insurance regulations tighten partly due to the expense, partly to regulatory measures on opioid use. All of this is contingent upon finding a doctor who is not only willing to do the paperwork, but is willing to prescribe the drug in the first place, and finding a pharmacy that is willing to dispense it.
In addition to the practical difficulties of obtaining opioid painkillers, the stigma of addiction is attached to the need for them amongst doctors and nurses as well. My mom likes and respects her current doctor, but he was hard to find. In her experience, patients seeking pain medication are generally treated with suspicion.
“It’s very awful actually, my friend who recently died from lupus, which is also a very painful disease, she and I used to talk about it all the time,” she told me. “First of all, if you acted like you knew anything about medications, they would take that as a sign you were an addict. One time I was refused treatment in a hospital because the doctor, I heard him whisper to the nurse, ‘She knows too much about medication.’”
Pam says the constant suspicion and lack of sympathy from jaded medical workers has often left her feeling depressed, scared, and isolated. Things have improved over time, but in the early years of her MS diagnosis it was especially hard to get respectful treatment from doctors who she says were mostly men that seemed skeptical of a woman’s pain. She also found their skepticism to be directed at all the wrong things.
Pam explains that doctors frequently ask a specific set of questions, testing people who are seeking pain treatment to judge if they’re really just looking to get high. She says, “Any person who really wanted to get drugs from the doctor could pass the test, they could get a hundred, because you know what the answers are supposed to be.
“But if we actually questioned the doctors or wanted to talk about something different, then it was like you had too much interest in the drugs. So you weren’t even able to participate in your own treatment. Certain things work for you, certain things don’t work. So then, to get the things you need, you have to lie, and give them the answers that will get what you need rather than being able to be straightforward and really talk about your feelings.”
Ultimately, both Dr. Malinoff and Dr. Hansen seem to agree that pain treatment is much more complicated than administering medications. They hope to find other ways to help patients recover, or take the smallest amount of pain meds they can manage on. Both doctors eschew the standard questions my mother is so impatient with, like pain scores. Dr. Malinoff explains that a number between one and 10 doesn’t actually tell you much about a patient’s life.
He says, “The useful question is not ‘how are you feeling,’ but ‘how are you doing.’ How are you feeling is a subjective thing. Objectively, a way to determine is if someone says, ‘I played a round of golf yesterday for the first time in two years.’ Someone who couldn’t lift up their grandchildren and now can, that’s an improvement. Regardless of what their pain score is... The problem with chronic pain is often patients become couch potatoes, they sit on their couch and worry about their pain, but they’re not doing anything. That’s bad, that’s not good medicine.”
Dr. Hansen also approaches pain treatment from a holistic standpoint, creating treatment plans that involve therapy, anti-depressants, massage therapy, cognitive behavioral and physical therapy. This is not the norm for those primary care doctors who give the rest a bad rap by either avoiding prescribing pain medications at all, or over-prescribing them irresponsibly. The other issue that even experienced pain doctors face is what treatments insurances will cover.
Dr. Hansen often feels like he is being torn between what he needs to do to keep his practice open, and what he can do best to support his patients. He says, “Treating pain is hard. It takes time. You have to sit down with a patient, you have to talk with them, see how things are going, and in medicine the thing that is reimbursed most poorly is your time and thought. What’s reimbursed best is procedures, and injections. So in pain medicine, most of the doctors are there to put a needle in your back. They’re there to do epidural injections which is fun for them, and makes a lot of money.”
Even for people lucky enough to be accepted in a more progressive pain practice, with glorious insurance, weaning off all opioids may not be an option. For some people, the pain is never going away. Dr. Hansen describes his patients as people no one else wants to deal with, saying, “I get the patients who are the worst of the worst. Patients who have failed their neurosurgical procedures. There was a woman who had literally her entire spine fused. I’ve had people who have had headaches that don’t respond to anything... One of my patients yesterday has had so many abdominal surgeries she basically has no bowel left. There’s no fix for that.”
It’s easy to be casual about other people’s pain, and that’s the beginning of the disconnect between people who are suffering and the systems meant to help them. Dr. Hansen believes that many of his patients are worn down and disenfranchised by years of not only physical difficulties, but the mental exhaustion of being told to “suck it up.” Dr. Malinoff frequently jokes with patients about how the world at large demands people with chronic pain syndromes live with the pain and without meds. He likes to say, “I have a very high tolerance for pain as long as I’m having no pain. Then I have no tolerance.”
I’ve now watched my mother take fentanyl for over a decade. I’ve answered more phone calls to her crying than I can count, because another doctor was threatening to stop prescribing the only drug that has ever relieved her pain and still allowed her to be herself. Because the pharmacist messed up the paperwork, or closed early, and she was facing a long weekend without relief. Because she’d been humiliated by a nurse or physician’s assistant who saw a woman racked with anxiety and dismissed her as an addict. Every ten days she finds out if she can continue to live without debilitating pain for another ten days.
With all these hurdles, of course, she wishes she didn’t need fentanyl, but in her state, detoxing is a very challenging option. She says, “My body is so used to it, I have no idea. I know a few times when I didn’t have enough, or sometimes when I wake up in the morning, I just scream when I’ll put my feet on the floor. So I’d have to figure out how to live with that.”
And because of withdrawal coupled with her MS, Pam says she could have seizures or die. “It’s not like I was just abusing drugs, I’d have to find a way to deal with the pain also. And then to be sick on top of it, even if I get a cold now, it makes my body very week for weeks afterwards. So I can’t imagine doing a detox. I also have problems with swallowing and that’s about breathing, so vomiting with detox doesn’t sound very safe…
“I think it’s a good clean drug,” she considers. “I try not to read any of the bad stuff about it. I haven’t been able to drink champagne. That’s the only thing I miss. It’s tough being sick.”
She laughs.