Last year, a 20-year-old man named Michael Israel committed suicide after battling addiction to painkillers. His father, Senator Tim Kennedy, and Attorney General Eric Schneiderman blamed the system, ultimately proposing a legislative package to “Save the Michaels of the world.” Thus, in an effort to crack down on prescription drug abuse, namely over-prescribing on the part of physicians, New York State enacted the I-STOP (Internet System to Track Over-Prescribing) Act one year ago. It takes effect on August 27th, along with its Prescription Monitoring Program (PMP), which apparently insecurely records, tracks, and transmits patients’ medication histories, dates of attempted and dispensed refills, and so on.
Somehow I missed this memo until yesterday, when I was confronted with the ugly reality that, thanks to I-STOP, I can’t get a refill prescription until after the new system takes effect.
In its overzealous quest to save the Michaels of the world, the State has blatantly chosen to ignore the undue burdens placed on those who medicate responsibly, and with all the hardships it already places on patients and providers, why am I surprised?
I have fibromyalgia. I’m fairly open about it. I have to be, as it impacts almost every aspect of my life. It took roughly a year of enduring extreme pain, terrifying symptoms, and dismissive physicians to be properly diagnosed. I was lucky enough to find a wonderful doctor who was willing to work with me to create an appropriate course of treatment. I go to physical therapy. I have a (gentle) home routine that (ideally) I do at least twice a week. By itself, however, this only went so far. Thus, we experimented with medications and dosages. After undergoing several ineffective trials and clearing multiple insurance barriers, I started taking Lyrica, the patent name for pregabalin. Pregabalin is used to treat chronic pain conditions like fibromyalgia, neuropathic pain, and can also control for seizures. After a rough acclimation period, my trigger points actually began receding. I could sleep under my comforter without being bothered by the pressure. Climbing subway steps went from unbearable to manageable. I could handle atmospheric pressure changes without crying. The constant feeling of needles at the base of my skull dissipated. I didn’t instantly black out when being massaged or vomit after the strain of physical therapy. I could wear heavier fabrics without bracing myself all day. I could even wear, albeit for limited periods of time, shoes that weren’t sneakers. And I could stand in those shoes for a full session of teaching, think on my feet again, and feel as though I had regained my vocation.
No single medication works for everyone, but I can safely say that Lyrica is my miracle drug. It is a controlled substance and therefore closely regulated. And I am terrified that one day, whether because of insurance difficulties or new legislation, it will be taken from me, and with it, my functionality.
Under the Controlled Substances Act (1970), the DEA regulates prescription drugs by ranking their addiction and abuse potential, organizing them in Schedules I-V, with Schedule I drugs possessing the highest abuse potential and Schedule V drugs possessing the least. For instance, Schedule I contains drugs like heroin, LSD, ecstasy, and marijuana (which arguably belongs in a different schedule, but that’s a different debate altogether). Schedule II contains drugs like codeine, morphine, and hydrocodone. Schedule III contains Vicodin. Schedule IV contains Klonopin, Valium, Xanax, and Ativan. Schedule V contains Ativan and—despite lobbying for its placement in Schedule IV for its comparable dependency potential—Lyrica.
These words—abuse, dependence, addiction—are used interchangeably, but dependency does not equal addiction or even potential for abuse. To put it bluntly, I am undoubtedly dependent on Lyrica. After the trouble I had with acclimating to it (as the label warns), the thought of abusing it seems absurd to me. Lyrica has relieved my pain but it has also given me a slew of side effects like dry mouth, occasional confusion, hot flashes, imbalance, and pseudo-aphasia. For a chronic pain condition, it’s a viable trade-off. But I can’t imagine why it would be taken or increased recreationally. You could get a better “high” on Tylenol PM, at lower cost and with zero regulation.
As with the other medications I tried and quit due to ineffectiveness, I could be weaned off Lyrica. Other fibromyalgia patients have had to be weaned off harder drugs like hydrocodone and morphine. It’s not desirable, but it’s doable. However, stopping cold turkey is next to impossible. Take me off Lyrica abruptly and I am slammed with pain, my speech becomes incomprehensible, I stutter, I become easily disoriented, nauseous, and depressive. The effects last for a long time. I know this because of difficulties I’ve had prior to I-STOP, when a pharmacy treated me like an addict because I’d unexpectedly been out of town, brought in a prescription that was 3 days expired, and they refused to fill it or even give me a partial refill to tide me over until I could see my doctor in person, no matter how much I pleaded and cried.
Ironically, suicidal ideation and death are frequently listed under the withdrawal warnings on most of these substances. Abruptly denying patients medication on which they are dependent may be enough to make them consider taking their own lives, a la Michael Israel. And with the difficulties I-STOP and PMP promise for physicians and patients alike, it seems patients run a higher risk of being abruptly denied.
Prior to I-STOP, all of these controlled substances already posed problems, but, arbitrarily, some more than others. Ativan, for instance, could be phoned in by a physician. Lyrica, despite being a Schedule V drug with low abuse and dependency potential, was treated like a true narcotic. (For the record, it isn’t one.) At first it was just that my primary physician couldn’t phone in a new prescription when my refills ran out. Then she wasn’t legally allowed to write me a prescription with any refills, so that I had to see her before the end of each month to get my new prescription for the next month. The one time I had a partial prescription called in as an emergency, the doctor had to call multiple times and fight with the pharmacist on the phone, essentially declaring that Lyrica is not a narcotic and that it is nonsensical to treat it this way.
Once I-STOP and PMP go into effect, physicians will scan all prescriptions into a database, into which pharmacists will enter all dispensing information. This database, which also includes personal information ranging from DOB to medical conditions to full medication histories, is available to the physician, supposedly so they can evaluate whether or not their patients are addicted to or abusing their drugs. From what I understand, patients on controlled substances are flagged such that their information is available to the DEA and is submitted to the registry maintained by the Bureau of Narcotics Enforcement, who may or may not begin monitoring these patients for drug abuse.
Welcome to the medical panopticon.
All that said, I’m not trying to dismiss the problem of prescription drug abuse. We are an overmedicated society, certainly. For instance, the Schedule II drug Adderall is sometimes prescribed to help people focus better rather than to treat ADHD or narcolepsy. Patients are sometimes given a higher dosage than they may require (though it is important to note here that it’s a trial-and-error process in which physicians and patients must remain communicative). But most importantly, I fail to see how this system would even account for the drug abuse it’s supposedly trying to stop. I-STOP won’t stop individuals who are unnecessarily obtaining prescriptions for codeine. The fact is that, for whatever reason, a physician is writing the prescription for them. That prescription will be scanned into the system. It will go on record at the dispensary. It will be on file with the DEA and the Bureau of Narcotics Enforcement. But as long as the individual refills their prescriptions in a legally timely manner, they’ll skate under the radar. And if this is more about saving the Michaels of the world, not everyone withdrawing from controlled substances commits suicide, and I-STOP does little to nothing to prevent the circulation of Schedule I drugs, most of which may be obtainable on the street at pharmaceutical-grade standards anyway.
Finally, since the State and insurance companies make it so difficult for responsible patients to obtain what they need, I am left wondering if some of what is construed as drug abuse is the patient’s way of “gaming the system” in anticipation of oppressive maneuvers. For example, circumventing the zero-refills and no-phone-ins problem by asking the physician to write prescriptions in advance, dated for the future, so that if a crisis occurs there is an unexpired prescription in hand, ready for drop-off. Also, given the threat of unexpected refusal to dispense medication, hoarding lower doses of the controlled substance: that is, if a patient goes up from 50 mg of hydrocodone to 70 mg but has 3 refills left on the 50 mg, he could fill the 70 mg and simultaneously obtain the 50 mg refills as though he were still taking them, so that—in the event of being denied the 70 mg—he could safely decrease to 50 mg instead of stopping cold turkey. I’m made to think, just a little, of lines of flight. But I-STOP’s PMP system precludes the possibility of exodus, of advance prescriptions, and theoretically, of refilling two doses of the same medication as that may increase the chances of investigation by the Bureau of Narcotic Enforcement. (As a side note, this begs the question of how patients will be treated when they need two doses in order to safely, incrementally increase.)
The proverbial icing on my frustrations with this system is that the system itself, like so many put into effect by State authorities, is simply flawed. New hires are running the system without being familiar with it. Physicians and pharmacists are able to view the personal information and medication histories of individuals who are not their patients, violating patient confidentiality under HIPAA. Hopefully this will change when PMP officially launches on August 27th, but I’m not keeping my fingers crossed. All I can think is that I should be worrying about finishing my coursework, preparing for quals, rewriting my book and submitting my work more widely. Instead, I am frozen with anxiety about the 28th and after: Will I be able to get my next prescription on time? Will Narcotics Enforcement monitor me because I had, at one time, refills of multiple doses of the same medication (of all the things I could be monitored for)? How am I going to schedule my qualifying exams if I constantly have this over my head, this knowledge that if I am deprived of this medication for even one day, I become utterly unthinking and incapable?
Maybe, in the end, I am only surprised because the lines of flight I have grown to depend on have been suddenly eradicated. I am forced to regress to the disempowering belief that I am my medication dependency. That, as such, I have to depend on the State. I can’t go off the grid. There is no avenue of resistance.
This work by V. Manivannan is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 3.0 Unported License.