See more “misty mountain” photos from my trip here
These communities rely almost solely on the dying coal industry that operates mines in the Appalachia mountains throughout Kentucky, Southern Ohio, Pennsylvania, and West Virginia. Not only do these areas struggle with economic depression, and an aging population, the heroin epidemic has hit these communities particularly hard as well.
The mountains here have been dynamited over the years to make room for better, wider, and safer roads. Shale rock breaks easily, so “steps” and ditches have been formed to prevent accidents from falling boulders and rock-slides.
Remains of the Sidney Coal Mining Company, now defunct. Images of the dying coal mining industry are tucked everywhere in the Appalachia mountains near Pikeville, KY.
Good, law-abiding people are suffering severely in the fallout from recent state and federal laws. Designed to curb heroin addiction, these laws and prevailing societal views all begin with the false assumption that prescription pain pills like Vicodin and oxycodone 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 sixties, 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 black 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 with my insurance over. 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 2:45pm, we arrived at 2:35pm, it is now 3:20pm. 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 these appointments every month, as opposed to the previous 3-6 months, for those prescribed opiates, but every appointment is a real burden on those called chronic pain patients (*pain lasting longer than 3 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 2-3 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. Recent laws have prevented surgeons from treating 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 a major uptick in DEA arrests, license revoking, and heavy fines, regular doctors refuse to prescribe opiates anymore.
The majority of 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 results 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 $3500 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 4 to 6 hours, no more than 2 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 5 minutes without tears.
Still, the extended release medications, lasting 12-24 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 advise 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 6 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, 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. 3:45pm. 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. 3:55pm. I’m so thankful my dad lives nearby and is a willing and able babysitter for my three children. 4:05pm. “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.
This is compassion? This is freedom? This is the state of modern medicine.
*Photo by, https://www.flickr.com/photos/cacis/
It’s been nearly one year since my researched article on the heroin epidemic (link) in my city, and I’ve been keeping tabs on the results of the DEA’s new prescription opioid reforms. How have things have panned out for pain patients, and opioid and heroin addicts in the past year?
Two years ago, National Pain Report, a patient advocacy group, published an article predicting what might happen after the DEA’s reforms were passed.
“Pain management experts say the rescheduling of hydrocodone by the U.S. Drug Enforcement Administration could have many unintended consequences, including higher healthcare costs, as well as more suicides, addiction and abuse of opioids. Many physicians may also refuse to write prescriptions for hydrocodone products, fearing fines or prosecution.”
All they predicted has happened, and more. Drug rationing (see here and here) for pain patients, some of whom are cancer patients, has been a major problem especially in Florida, which in addition to having a higher (nationally) number of opioid abusers, also has a higher number of elderly and sick. *Update: I recently heard a rumor that a documentary is being made about the Florida issue.
“[Pharmacist] Bill Napier, who owns the small, independent Panama Pharmacy in Jacksonville…says he can’t serve customers who legitimately need painkillers because the wholesalers who supply his store will no longer distribute the amount of medications he needs. “I turn away sometimes 20 people a day,” says Napier.
Last year Napier says federal Drug Enforcement Administration agents visited him to discuss the narcotics he dispensed.“They showed me a number, and they said that if I wasn’t closer to the state average, they would come back. So I got pretty close to the state average,” Napier says. He says he made the adjustment “based on no science, but knowing where the number needed to be. We had to dismiss some patients in order to get to that number.”
According to Napier, DEA agents took all of his opioid prescriptions and held on to them for seven months. Napier hired a lawyer and paid for criminal background checks on his patients taking narcotics to help him decide which ones to drop.” (source)
In this one-year post report from Northern Ohio, another state that has been hard-hit with opiate addictions, a lot of facsimile changes were made in local laws, which resulted in anywhere from no changes, to an increase in heroin use. Thankfully, this report specifically mentions heroin as the drug to be battling against, rather than other articles and news reports, including recent comments from President Obama, that have made pain patients out to be drug abusers, by default. They group heroin use/abuse with anyone taking an opioid for any reason (see here and video here).
While the DEA has succeeded in reducing the number of opioid prescriptions by strong-arming doctors and pharmacies, they have condemned chronic pain and surgery patients to depression, exhaustion, high levels of mental and physical stress, brain shrinkage, trouble concentrating and making decisions, insomnia, and anxiety, all side effects of uncontrolled chronic pain. As a result of these stressors, it remains to be seen (for lack of hard numbers) if the suicide rate among chronic pain patients, already known to be twice the rate of non-chronically-pained patients, has indeed gone up (source). But what has the DEA done about opioid abuse on the street? What have they done to stem the ever-rising tide of heroin trafficking and use? What have they done to reduce the rate of prescription abuse, not just use? Not one thing. What viable alternatives for pain patients have been produced in the past year?
In the middle of all this madness, is a push for new (supposedly non-addictive) drugs and treatments. Unfortunately, these new treatments tend to be very expensive, are more invasive, have mixed rates of effectiveness, and are rarely covered by insurance. One news article blithely claimed (using new CDC guidelines) that boosting endorphins via exercise was on par with taking narcotic pain medicine. What they failed to keep in mind is that those who are elderly, sick, or disabled, or those recovering from surgery, may not be able to exercise, especially if they’re in pain! While this same video also recommended OTC pain meds like Tylenol or Motrin, one main reason chronic pain patients are prescribed opioids in the first place, is to avoid the associated and well-documented kidney, liver, heart, or stomach damage from high and/or prolonged use of OTC medicines.
“The misguided, insensitive and inhumane policies of our government and the DEA in particular, have led us to create a Facebook page called Patients United for DEA Reform.
…All of us are only one injury or diagnosis away from being crippled with pain. Think of living every day with a toothache that won’t stop, an untreated broken bone, or surgery with no post-operative pain relief.
People are living with untreated pain every moment of every day because of government over reach and inhumane DEA policies. It must be stopped and it must be stopped now.” (Source)
As if this weren’t enough, there have been several politicians in the past few weeks advocating for even further restrictions on prescription narcotics. Vermont Governor Peter Shumlin (D) and Kentucky Gov. Matt Bevin (R), are now pushing for even more legislation that will keep pain patients (who have a difficult time as it is getting around) from receiving more than ten pills at one time. Shumlin wrote, “opioid medications, as we know them, must be made obsolete”.
If this war on opioids has resulted in the predicted effects of more illicit drug abuse, of more patients in desperate pain, of an increase in deaths related to drug overdose and suicide, in more frustrated doctors and pharmacies, and an increase in healthcare costs, it seems clear these new laws have helped no one, and hurt millions. Or have they?