Good, law-abiding people are suffering severely in the fallout from recent state and federal laws. These laws and prevailing societal views all begin with the false assumption that prescription pain pills are entirely to blame for rising heroin and fentanyl abuse rates. Chronic pain patients, including many elderly and disabled citizens, often feel treated like criminals. What follows is a personal account of what chronic pain patients have to go through to obtain legitimate prescriptions from legitimate, experienced doctors, that enable them to participate more fully in life.
A woman, perhaps in her late 60s, wears a tan sweatshirt with the simple, humorously ironic message, “Sarcasm Society: Like we need your membership.” She sits next to her older friend, a frail, bent woman in a wheelchair with a quilted coat draped over it. The “sarcasm” lady unfolds a newsletter, leans close to her friend, and reads. The older woman smiles as she listens.
Nearby, another couple sits; a tall, middle-aged man in military fatigues plays a game on his smartphone while his mother jokes and tells him the family news. He chuckles good-naturedly, but never takes his eyes off his phone.
At the other end of the room sits an older daughter with bushy red-orange hair in a large ponytail, and her thin, elderly father who tries to sit straight and tall with the help of his cane. He wears a black leather jacket and ball cap, and mutters something quietly. “Don’t talk like that!” his daughter admonishes. Then more gently, she says, “You’re over-thinking again…”
This long, narrow waiting room is stuffed with people. People in pain. People like me. At 33, I am perhaps the youngest person in the room. A single TV is mounted above my head, showing President Obama’s last question and answer session with reporters. A lanky man in a golden velvet pantsuit sits near me. He stares at the floor and listens to the interview. There are many others. Some busy themselves with cell phones; some lay their heads back against the blue wall and close their eyes; one lady reads a colorful, worn-out magazine. Everyone is tired. No one wants to be here.
Once again today, I fight a rising panic that this time my surgery pain will not be treated. This time I will be told about yet another hoop I have to jump through, yet another bill I will have to fight over with my insurance. My husband points out a new sign in the office, “As of June 1, 2016, all self-pay patients will have an increased payment from $85 to $100 per visit.”
My stomach begins to hurt, and I feel like pacing. I watch the enormous clock on the wall beside me, the only decoration in the low-lit room. My appointment was scheduled for 2:45 p.m., we arrived at 2:35 p.m., it is now 3:20 p.m. The cushioned seats smell of stale smoke, and my husband complains of a headache. I shift in my chair but can’t get comfortable.
New laws require me to make these appointments every month, as opposed to the previous three to six months, for those prescribed opiates, but every appointment is a real burden on people called chronic pain patients (pain lasting longer than three months). Cost and rising insurance deductibles notwithstanding, most of these patients have to find rides and a helper to get in and out of vehicles, and in and out of the doctor’s office. These patients are physically weak, and have to juggle exhaustion, pain, and a variety of medical devices like canes, walkers, braces, and wheelchairs, not to mention purses, coats, and something to occupy the time.
Helpers and/or drivers have busy lives too, and most of them work full time. These appointments can take hours, and do not include additional appointments for physical therapy, regular doctor appointments, specialized doctor appointments (there may even be two and three different doctors), lab work, hospital visits for x-rays, MRIs, and CT scans, dentist appointments, and more. All of these appointments require driving and walking assistance. My husband has taken a half-day vacation today. He has been warned by his boss he has taken too much company time.
The nurses and doctors and office staff all work remarkably fast. They are used to this rush of slow-moving people and have a system. I am so deeply thankful for this place of last resort. Some surgeons won’t treat surgery pain past three months, even for major surgeries in which recovery can take a full year or more, like my spinal fusion. Although I had referrals from both my doctor and surgeon, after calling over a dozen pain clinics in my area, this is the only one that would take me in. I was told several times the office I’d called did not work with surgery patients. Only a few local clinics are staffed by actual pain doctors. The rest are headed by anesthesiologists, who do not seem to understand the needs of post-surgery patients, or feel prevented by federal and state laws from prescribing opiates. Due to an uptick in arrests, license revoking and fines, some regular doctors refuse to prescribe opiates anymore.
Some pain clinics likewise either outright refuse to prescribe opiates, or resort to “prescription hopping,” changing a patient’s medication every month to avoid meeting quotas that will likely arouse government suspicion. This can result in potential side effects for patients, some of which can be very serious, as well as expensive medication bills.
I squirm in my chair, realizing I need to go to the bathroom, but I have to wait in order to take the drug test. The drug test that cost my insurance $3,500 per test. The drug test which has to be sent to an outside lab for rigorous analysis. The drug test I had to have at every visit at my previous pain clinic to prove I was not abusing my medicine or taking street drugs along with it. Though my medical record and scars should prove my case, at my last visit, my doctor told me the drug screening was also to prove I was the one taking my medicine, and that I was in fact taking it. Although the legal, societal, and medical pressure is immense to be off opiates, I could be kicked out of the pain clinic for not taking my medicine exactly as prescribed, even if I wasn’t taking it, or needed it less often: “Every four to six hours, no more than two max/day.”
I’ve been dropped from a pain clinic before. No test ever came back positive for abuse, and no stated reason was given. My appointment for that week was canceled meaning no prescription for the next 30 days, and no referral, no information, no medication to wean and thereby prevent or reduce withdrawal symptoms was given. The month prior, they had put me on an ER (extended release) hydrocodone that I didn’t want to be on; I was very slowly getting better and wanted to begin lessening my dosage. I needed to get active and strengthen my body, but moving more than a few steps was acutely painful and exhausting. Without pain management, physical therapy was out of the question: I couldn’t even ride in a car more than five minutes without tears.
Still, the extended release medications, lasting 12 to 24 hours, and meant to curb addiction, made addiction more likely as I couldn’t wean off and my body became used to having the medicine around the clock. I called addiction clinics for advice on what to expect, I searched the internet for help in deciding my next steps. No one seemed to know what to do. After several days of highly unpleasant symptoms (including psychological ones such as suicidal thoughts), and being tossed back and forth between my doctors’ offices like a dirty ball that no one wants, I was advised to go to the ER for complications of opiate withdrawal. The doctor there heard my story and sighed deeply. She shook her head, “Everyone is so afraid of these medications now, people like you are getting caught in the cross-fire.”
Back in my current doctor’s office, the testing bathroom is curious. It has no lock on the door, no water to wash with at the sink, and large signs stating that you are not to flush. That job is left to nurses, after they have examined the contents of the toilet. It has always been very difficult for me to give a sample. My back was terribly swollen for months, and bending at all was out of the question for half a year. No other helper could attend you during testing, but a certain amount of urine is still required.
My name is called, I talk with my doctor. I am very proud of the progress I’ve made in healing since my last appointment. I can now handle long car rides, I finally got to visit family who live six hours away for Christmas, I even did a little yard work during a warm spell last week. I haven’t been able to do these things since a year before my surgery last December, and I am so thrilled. I am getting better! To all this, my doctor merely gives a stiff warning not to overdo things, that she cannot increase my medication, and that if I still need medication by my next appointment (regardless of progress in healing), I will have to undergo other procedures or lose my place at the clinic. We have talked about these procedures before. They are very expensive, invasive, painful, and have mixed results, but legally, my doctors are not allowed to continue medication alone, even when there is evidence it is helping. If my body does not heal according to a timeline unknown to me, I and my doctors will be forced into this procedure.
I walk down the winding hallway of exam rooms towards the exit, make another appointment, and sit down once more in the waiting room for my prescriptions. 3:45 p.m. My last month’s prescription cost over $40 with insurance. My oldest daughter needs new clothing. My husband needs new glasses. My son’s class is taking a field trip next week and the fee is due tomorrow. 3:55 p.m. I’m so thankful my dad lives nearby and is a willing and able babysitter for my three children. 4:05 p.m. “Mrs. Lawrence,” I walk over and check my scripts, thank the nurse, and turn around to gather my things. I glance around once more at the still-full room. Unlike me, most of these people will not get better. Unlike me, most of these people have serious and/or multiple medical conditions.