Williamson, West Virginia and the Opioid Crisis (Fake News Alert!)

Headline: 20.8 Million Pain Pills Flood Tiny Town in WV

Let’s talk about Williamson, West Virginia, the little town in Mingo County that has been featured in the news for the past several years as a sort of starting point for the opioid epidemic.
IMG_2123_watermark
Downtown Williamson, WV, named for my grandfather’s side of the family!

According to sources, 20 million (give or take about 1 million) pain pills were sent to Williamson, WV, pop. 2900-3200 (depending on your source) over a 10 year period, and that those numbers are insanely high for such a little town. Sources imply the doctors there must be corrupt pill-pushers, with their pockets deep in Big Pharma, and/or Big Pharma picked on this unsuspecting underdog town for the purposes of corporate greed. 

This story is also meant to imply doctors cannot be trusted to prescribe pain pills appropriately, and therefore need major government oversight. Doctors are meant to be seen as directly responsible (along with Big Pharma) for “passing out pain pills like candy” and getting the population hooked on opioids.

The headline’s numbers look insane (which is the point), but NOT ONE article takes demographics into account. That little town’s elderly population consists of 22% elderly (65+), and 56% adults 18-64. Those working adults overwhelmingly hold/held manual labor jobs, which tend to lead to more serious and long-term, even lifelong injuries.


Break It Down:

  • 20 million pills divided by 10 years = 2 million pills per year.
  • To keep things simple, assume ONLY the elderly 65+ gets pain pills. That’s 22% (elderly pop.) x 3,000 (total pop. of town) = 660 elderly people.

  • 2 million pills per year divided by 660 (est. elderly pop.) = 3030 pills/year/elderly person.
  • 3030 pills per year divided by 365 days per year = roughly 8 pills/day.

  • 1 pill lasts 4-6 hours, so 24 hours/4 hours coverage = 6 pills per day*.

  • Before this opioid crisis started, 4-6 pills/day wasn’t an unusual amount, and patients could even sometimes take (gasp) 2 pills at a time, depending on the dosage and their situation.
And those figures are crunched just based on the elderly population alone. If you figure in other older adults like those in the 50-64 age range, that number of pills per day goes down even further.

There is a heroin epidemic, and there is an economic crisis, but as far as Williamson, WV and little towns like it being “flooded” with unnecessary pain pills, I call FAKE NEWS!
Advertisements

An Open Letter to Dr. Andrew Kolodny

Update 6/27/18: I am overwhelmed by the positive responses I have received for this letter. I would ask that readers also take a look at all the articles and references cited in this piece, and share those as well. Those references go into much, much more detail and research than I have had space or time for here. Thank you all so much for reading and sharing, I believe we will make a difference and win this fight for our lives! #wearehere

See also: A Rock and a Hard Place, The Truth About the Opioid Crisis, and Strangulation on Medicine

Dear Dr. Kolodny,

I am one of millions of chronic pain patients in the United States who has been continually and increasingly oppressed over the past few years by progressively invasive and prohibitive laws at the state and federal levels concerning the delicate relationship between doctors and patients, particularly when it comes to a certain class of drugs, i.e. opiates.

Ever since my very real, physical condition began about 4 years ago, my family and I have been disoriented again and again by a lack of what might be termed, “help,” from doctors. We have discovered a very confused medical community, corruption, and a growing collection of laws being passed so fast and furiously hardly anyone seems to know just what is going on.

This has resulted in doctors leaving my city, doctors outright refusing to accept chronic pain patients (or, if they do accept these patients, refusing to treat them with medications that suit the patient best) or new patients, and unprecedented referrals to pain management clinics and psychiatrists. I have a detailed post planned addressing the pain management clinics, but the psychiatrist referrals were more baffling to me. My local psychiatrists even refused me as a patient about a year ago because, “we don’t see chronic pain patients.” That made sense to me as I don’t suffer from mental illness, still my providers insisted I must be mistaken.


Down the Rabbit Hole

I began researching you and your career last night out of curiosity. I wanted to answer the question, “Who is this Dr. A. Kolodny, that everyone from journalists to policy makers and bloggers keep quoting as an “expert on opiates”?” And I found out. You, sir, are a psychiatrist and board-certified addiction specialist-turned policy maker (1) and buprenorphine (Suboxone) “evangelist” (2).

Your first private clinic was a Suboxone clinic in New York City, established sometime around 2003-2005, and it appears you (and/or other health officials) felt stymied by the federal limit at the time of just 30 patients for such clinics (put in place to stem corruption), because said health officials have been in the background, quietly working away at this very limit which was amended in 2006 (called DATA), to allow 100* patients after 1 year, and is now up in the House for being overturned altogether, along with expanding legal prescribers to nurses and other non-doctor medical staff. And look what has happened as a result:

Health officials, concerned about restricted access, lobbied alongside Reckitt Benckiser for the patient cap to be raised. “Why should we bind a healer’s hands from helping as many as he or she could?” Senator Hatch said, getting an amendment passed in 2006 that allowed doctors, on request, to go from 30 to 100 patients after a year.

The stage was set for more patients, prescriptions and problems. “It’s when the limit was raised from 30 that doctors started to get commercial about it,” said Dr. Art Van Zee, whose buprenorphine program at a federally funded community health center in rural Virginia is surrounded by for-profit clinics where doctors charge $100 for weekly visits, pulling in, he estimated, about $500,000 a year.

“They are not savvy about addiction medicine, don’t follow patients very closely, don’t do urine testing and overprescribe,” he said. “That’s how buprenorphine became a street drug in our area.” https://www.nytimes.com/2013/11/17/health/in-demand-in-clinics-and-on-the-street-bupe-can-be-savior-or-menace.html (4)

“In the early days of Suboxone, with Reckitt Benckiser barely marketing its own drug, Dr. Kolodny, then a New York City health official, crisscrossed the city with colleagues to spread the word about the new medication, entice public hospitals to try it with $10,000 rewards and urge doctors to get certified.”

https://www.nytimes.com/2013/11/17/health/in-demand-in-clinics-and-on-the-street-bupe-can-be-savior-or-menace.html (4)

Since at least 2005, you have been marketing buprenorphine as if you had a personal stake in the drug, to government institutions and agencies including prisons, public hospitals, and rehabilitation facilities (2). In the fall of 2013, you were appointed Chief Medical Officer (5), of the largest chain of non-profit detox/rehab facilities in the USA (cited for questionable practices and abuse from at least 2012-2015) (6) called Phoenix House, which received $131 million in June 2013 (7), championing the use of MAT, or “Medication Assisted Treatment”. I wonder which drug Phoenix House used?


Hang ‘Em High?

salem witch hanging.PNG
An innocent “witch” (woman) is hanged at the Salem Witch Trials, much like other innocent pain patients are persecuted.

Since you often cite the United States vs. Purdue Pharma (2007) settlement in your interviews and writings, perhaps you saw an opportunity to expand the use of buprenorphine by targeting and demeaning chronic pain patients as mere “addicts”.
It was odd to me in researching that incident, in the official “Purdue Guilty Plea” document (8), the very words they were condemned for, claiming OxyContin to be “less addictive” and “less subject to abuse and diversion” (8), appear to be the exact words you use time and again when describing the benefits of buprenorphine (2).

Kolodny reminds his colleagues of the drug’s advantages. He stresses that bupe in the form of Suboxone is safe and almost impossible to abuse, a huge selling point at many of the clinics they will visit. Suboxone has a second active ingredient in the mix, he explains, an anti-overdose drug called naloxone.

It does nothing if you take bupe as directed. But if you sniff bupe or inject it or otherwise try to pack enough into your bloodstream to get high, the naloxone acts like a chemical booby trap, erasing the effects of any opiate, bupe included, and bringing on sweaty, nauseating withdrawal. “That’s the last time you’ll do it,” Kolodny says dryly. https://www.wired.com/2005/04/bupe/

In 2016, your organization, PROP (Physicians for Responsible Opiot Prescribing), got the ear of the CDC and helped to write the now-infamous, misinformed, and rushed guidelines for prescribing opiates. While these guidelines were fairly general in nature, they have been used as a springboard for countless pieces of state legislation and DEA investigations, which has, in turn, led to the above-mentioned abuse and abandonment of chronic pain patients and doctors, as well as opiate shortages in hospitals and ERs (The DEA, in an attempt to prevent diversion of opiates to the black market, has cut production by an incredible 45% in the past 2 years). I imagine that suits you just fine, since you have publicly stated you believe opiates should be discontinued for all but the dying and post-major surgery “for a few days” (https://www.ket.org/opioids/inside-opioid-addiction-10-questions-with-dr-andrew-kolodny/), and that “more treatment” is needed (https://www.vox.com/science-and-health/2017/8/3/16079772/opioid-epidemic-drug-overdoses), i.e. MAT/Suboxone clinics like Phoenix House.

'The National Gesture' 1926
“The National Gesture” 1926

You have hailed local municipalities and states in their further pursuit of legal action against American Big Pharma, the companies who make such things as Vicodin and Percocet, but not Suboxone/buprenorphine (which is also an opiate), which is made by an overseas company, Reckitt Benckiser, or Naloxone (Narcan), which is produced in a nasal spray exclusively by Amphastar Pharmaceuticals (10), a relatively new company founded in California in 1996 (11),  whose stock (and Narcan prices) has been rising quite a bit, lately (12, 13). Are you truly against the use of opioids, or just the ones that help pain?


The Opioid Epidemic!

mccarthyism
McCarthyism Propaganda

Although your policies, based on inaccurate data (14-15) https://www.acsh.org/news/2017/10/12/opioid-epidemic-6-charts-designed-deceive-you-11935 (15), and http://www.mdmag.com/journals/pain-management/2012/october-november-2012/just-how-responsible-is-prop, have been wildly ineffective at stopping heroin/fentanyl overdoses; although you are not a pharmacologist, opiate researcher, pain doctor, pain patient, surgeon, or even general practitioner; although you ran a private clinic for a short time in 2005 (as far as I’ve been able to learn) that dispensed buprenorphine/Suboxone, you have, for the majority of your career as far as I can tell, been a policy-maker and not directly involved with addiction patients or chronic pain patients whom you recently claimed were simply addicts who needed compassion and “treatment” (and, presumably, Suboxone).

“Many Americans are truly convinced that opioids are helping them. They can’t get out of the bed without them.”

“Policy makers were told by industry-funded pain organizations not to penalize pain patients because of drug abusers. We realized that this wasn’t true. We don’t have these two distinct groups, one for pain patients and the other for drug abusers.” https://www.kolmac.com/2015/12/qa-dr-andrew-kolodny-chief-medical-officer-phoenix-house/ (15a)


If You’re Not For Us, You’re Against Us

sen. joe mccarthy demonstrates the communist threat
Senator Joe McCarthy Demonstrates the Communist Threat in America

You are cited and quoted in an impressive number of articles and interviews as a compassionate person who wants to see people and their families heal from the devastation of addiction, which is why it surprised me to find quotes from you that didn’t seem, well, “nice.”

It is the FDA’s role to vigilantly regulate the approval, labeling, and promotion of  pharmaceutical products, not that of counties or municipalities. County and municipal lawyers are inadequately qualified to make or enforce federal drug policy, and these lawsuits serve as a vehicle for local governments to seek revenue  through ill-informed measures under the guise of drug abuse prevention. In a May 30,2014, interview with   FDA Week, a CLAAD spokesman voiced these positions and expressed concern that these lawsuits are part of “a trend that will distract us from the real meaningful approaches to reducing prescription drug abuse.”

After reading the interview, Dr. Andrew Kolodny, president of Physicians for Responsible Opioid Prescribing (PROP)and Chief Medical Officer of Phoenix House,  contacted CLAAD via telephone to condemn its comments. During this conversation, Kolodny threatened that the Internal Revenue Service would revoke CLAAD’s tax-exempt status when alerted to the comments, which he believes conflict with CLAAD’s charitable mission.  CLAAD takes these false allegations and threats very seriously, and  responded in a letter which is publicly available for view on our website.

Critics who categorically dispute the motives of organizations like CLAAD and its diverse coalition members are, at best, narrowly focused. Their zealotry reveals their otherwise undisclosed health insurance industry bias.  At worst, they endanger the lives of people who live with pain and other conditions that can require controlled substances by stifling access to quality care. http://paindr.com/claad-and-phoenix-house-square-off/ (16)

Anyone who questions your authority, expertise, policies, or the efficacy of your pet drug, buprenorphine, is loudly dismissed by you as uneducated (17), addicted (15a), or corrupt (15a, 18), regardless of how closely they actually work with addicts and pain patients (17).

But Dr. Kolodny, I have nothing left to lose — your policies and attitudes have directly impacted my health, my freedom, my ability to be a parent, my work, my hobbies, my family, my finances, my friends, and my personhood. I have no problem announcing to the public, as loudly as I can, “The Emperor is not wearing any clothes!”

emporer has no clothes


Citations

(1) http://www.cecentral.com/search/faculty/136145

(2) https://www.wired.com/2005/04/bupe/

(5) https://www.phoenixhouse.org/news-and-views/news-and-events/phoenix-house-appoints-dr-andrew-kolodny-as-chief-medical-officer/

(4) https://www.nytimes.com/2013/11/17/health/in-demand-in-clinics-and-on-the-street-bupe-can-be-savior-or-menace.html

(6) https://www.reuters.com/investigates/special-report/usa-rehab-phoenixhouse/

(7) http://www.phoenixhouse.org/wp-content/uploads/2014/06/2013-Financial-Report.pdf

(8) https://assets.documentcloud.org/documents/4378824/Purdue-Guilty-Plea-Copy.pdf

(9)

(10) https://www.npr.org/sections/health-shots/2015/09/10/439219409/naloxone-price-soars-key-weapon-against-heroin-overdoses

(11) http://www.amphastar.com/about-us.html

(12) https://www.equities.com/news/naloxone-stocks-who-s-really-winning-the-battle-against-the-opioid-epidemic

(13) https://thinkprogress.org/pharmaceutical-company-with-monopoly-on-lifesaving-treatment-jacks-up-prices-3883e95f88c7/

(14) https://medium.com/@stmartin/neat-plausible-and-generally-wrong-a-response-to-the-cdc-recommendations-for-chronic-opioid-use-5c9d9d319f71

https://www.ket.org/opioids/inside-opioid-addiction-10-questions-with-dr-andrew-kolodny/

(15) https://www.acsh.org/news/2017/10/12/opioid-epidemic-6-charts-designed-deceive-you-11935

(15a) https://www.kolmac.com/2015/12/qa-dr-andrew-kolodny-chief-medical-officer-phoenix-house/

https://abcnews.go.com/Health/deaths-drug-overdoses-continue-rise-us-blacks-hispanics/story?id=54094943

(16) http://paindr.com/claad-and-phoenix-house-square-off/

(17) https://www.nytimes.com/2016/05/29/opinion/sunday/addicted-to-a-treatment-for-addiction.html

(18) https://www.kolmac.com/2015/12/qa-dr-andrew-kolodny-chief-medical-officer-phoenix-house/

https://www.vox.com/science-and-health/2017/8/3/16079772/opioid-epidemic-drug-overdoses

https://www.cdc.gov/drugoverdose/prescribing/guideline.html


Further Resources

https://www.cdc.gov/drugoverdose/prescribing/guideline.html

https://www.bendbulletin.com/topics/5342867-151/opioid-crisis-pain-patients-pushed-to-the-brink

http://www.mdmag.com/journals/pain-management/2012/october-november-2012/just-how-responsible-is-prop

http://nationalpainreport.com/cdc-does-not-comply-with-federal-law-8828305.html

https://www.chronicle.com/article/To-Counter-Opioid-Crisis-NIH/240219

https://www.painnewsnetwork.org/stories/2016/8/11/prop-ends-affiliation-with-phoenix-house

https://www.drugabuse.gov/publications/research-reports/relationship-between-prescription-drug-abuse-heroin-use/introduction

A Rock and a Hard Place: Pain Patients Suffer from Heroin Laws Fallout

See also: An Open Letter to Dr. Kolodny, The Truth About the Opioid Crisis, and Strangulation on Medicine

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.

disabled
“Disabled,” Photo credit: User afri.on Flickr.com

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.


Additional Resources:

A ‘civil war’ over painkillers rips apart the medical community — and leaves patients in fear

http://america.aljazeera.com/opinions/2015/12/dea-crackdown-on-pain-meds.html

*Photo by, https://www.flickr.com/photos/cacis/

https://llawrenceauthor.wordpress.com/2016/03/13/on-opioids-one-year-after-dea-reforms-part-1-of-2/

https://llawrenceauthor.wordpress.com/2015/04/06/wackydruglaws/

Strangulation on Medicine: My Life as a Pain Patient

See also: An Open Letter to Dr. Kolodny, The Truth About the Opioid Crisis, and A Rock and a Hard Place: Pain Patients Suffer from Heroin Laws Fallout

Imagine, if you will: Waking up morning after morning, with sudden, inexplicable, extreme pain in one side that leaves you bedridden for a few hours, then a few days, a few weeks, a whole year.

Imagine not being able to find the source of the pain. Spending every week with a different doctor. Spending at least $200 on each doctor. Trying at least one new prescription every month. Spending at least $30 on each prescription. Watching the medical bills pile up, knowing you are the sole cause of each one.

IMG_9121_1a_watermarkImagine watching your young children struggle to learn to live without you. Being unable to volunteer at your child’s school because, although you have the time, you don’t have the physical stamina. Being unable to attend most school events, and seeing the disappoint on your children’s faces when you have to tell them, “I’m so sorry, baby, Mommy just can’t do it.” Spelling bees, science fairs, choir concerts, end-of-school picnics, and most painful, 5th grade graduation.

Imagine seeing your spouse become literally bent over and graying early under the stress of being essentially a single parent, plus the stress of being a full-time adult care-giver, while holding down a full-time job, and doing all the cooking, cleaning, and fixing, while also going to school part time.

Imagine being unable to visit your beloved, aging grandparents who live 5 hours away. Or being unable to visit best friends who live 1 hour away. Being unable to attend weddings of dear family and friends because they are “too far away” at 30 minutes to 1 hour. Being unable to travel more than 15 minutes by car. Being unable to walk more than 10 minutes-on a good day.

Imagine being a house-bound invalid at age 31, feeling your muscles becoming a little weaker every day. Swallowing your pride to buy a cane, and using that cane (in public) to support your bad leg on those lucky days you do get out. Imagine shopping for electric wheelchairs since not walking seems to be the new normal, and you are being driven crazy from being stuck inside for so long. Imagine shopping for walkers at age 31. Imagine the embarrassment of personally knowing many people, twice your age, more active than you.

IMG_1646_1a
Me, my dog, and Poe. This is where and how I spent much of my life for 2 years.

With “Care” Like This…

Imagine having your insurance company refuse to pay for things that might shed important light on your problem, or help make it better. Things like MRIs, prescribed back braces, insurance-required physical therapy, any number of expensive drugs or treatments.

Imagine having your primary care doctor whom you’ve known for 7 years, refuse to treat your pain, because new laws prevent him. Imagine him suggesting you are overreacting,and your pain can’t be as bad as you say, even though he just looked at your x-rays and declared your problem will never get better, and cannot be fixed.

Imagine your doctor prescribing a medication that does nothing for your pain, but causes brain dysfunction in the form of a manic episode. Imagine that when you tell your doctor this, he suggests you see a chronic pain specialist who cannot see you for at least 1 month, will insist on giving you invasive, risky, epidural (link) injections that may or may not help your pain, but are terribly expensive and painful.

Imagine your doctor, after telling you you will not get better, brushing off your request for disability papers because you are “too young”. Imagine your doctor brushing off your request for an expert opinion in the form of a neurosurgeon referral, or brushing off your request for further testing.

Imagine, if you will: Being unable to think or work. Imagine feeling so very tired all the time, or anxious too often, or deeply depressed. Imagine feeling worthless, no, more than worthless, a real burden on the ones you love most financially, emotionally, mentally, and physically. Imagine wanting to end your life, and planning it, at least once a week. Imagine crying for hours at a time, because there seems to be no end to the pain, the frustration, the uncertainty, the bills.

IMG_9220_1a_watermark


The Solution to Your Problem is Simple…

Now imagine, if you will: At the end of the year, finally having your chiropractor (whom you have been seeing for insurance-required, but not insurance-paid physical therapy) order an MRI. Imagine, after a fight with your doctor who was annoyed you went over his head and had an MRI, while also insisting on a neurosurgeon referral, finally landing a doctor who reads the x-rays and MRI, understands your problem and (could it be possible after all this time!?) fix it.

Imagine hearing the news you were dreading, that you will need a spinal fusion (a major, delicate surgery, with a long recovery) and discectomy; that your lowest vertebrae are separated, and have been for years and years; that this has allowed a spinal disc to slide out of place, forcefully compressing a nerve; that this is the cause of your inability to walk, to ride in a car, to sit comfortably, to sleep through the night, to live well. Imagine scheduling your surgery and feeling like all the pieces are finally falling into place; there is a light at the end of the tunnel!

Imagine, if you will: A slow recovery that begins with immense pain and not being able to walk, to dress yourself, to bathe yourself, to lie down, to sit outside. Imagine feeling very old and very frail. Imagine every month expecting to turn an invisible corner in pain relief, energy, and movement ability, but only seeing little, gradual bits of progress here and there. Imagine that month 3’s post-op big accomplishment is going to the store (accompanied by a driver, because you have hardly driven in well over a year), by using the store’s electric cart and your back brace. Image month 4’s big accomplishment is making it through a brief session of physical therapy without needing a 3-hour nap afterwards.

The Right to Suffer:

Imagine everything you do/can do depends on how well your pain is managed: Getting necessary and wanted exercise; getting (finally) out of the house; getting around the house; sleeping through the night; doing a few light chores; having the energy and ability to focus on things you love like reading, playing board games with the kids, having visitors over, sitting in your garden swing, or just laughing.

Now imagine, if you will: Your surgeon, the only one familiar with your case, your surgery, your history, not legally being able to manage your pain after just 3 months. Imagine being referred by your surgeon to your primary care doctor, who refuses to treat your pain (but only tells you that after an office visit), and refers you to a chronic pain specialist who cannot see you for at least 2 weeks, who has little knowledge of how to treat acute (short term and surgery) pain, who has little knowledge of spinal fusions or surgeries in general, who changes your medication 7 different times in 3 months, who prescribes super-expensive medicines that you cannot pay for, who prescribes medicines that make you so sick, you are either in bed or in the bathroom all day, meaning your spouse must work from home to watch the kids, making you worry about his job security, which makes you anxious for how to feed your kids.

pain scale

Imagine this chronic pain specialist under-medicates you for 3 months, insists on treating periodic, break-through pain with 12 and 24 hour narcotics which make you sick, which are MORE likely to produce addiction. Imagine, that despite doctors’ promises about proper pain management, when you finally refuse to be a guinea pig anymore, and ask for the simple, effective, economical medicine option, you are treated like an addict despite all the urine tests you’ve taken to prove you are not, despite the good faith contract you signed at the office just to be seen, and despite all the paperwork that double-checked your claims, medical history, and medicines across your entire provider network–hey, whatever happened to HIPPA laws?

Doctors said that the vast majority of the patients who need pain medications don’t abuse them. Source

IMG_9200_1a_watermark
The way is shut.

Imagine having a pain specialist who you cannot get in touch with for 3 days when your latest prescription, filled only 3 days prior, gave you diarrhea, chills, major migraines, insomnia, and finally a psychotic episode in which you cried for 3 hours and stormed out of the house at 5am, pacing the front yard like an animal as your spouse watched horrified from the front door.

Imagine having a pain specialist who accuses you of breaking your signed pain contract with them, because you told them in order to make it through the weekend, you had to cut old medicines from right after the surgery in half, since you couldn’t get in contact with them. Imagine having to tell them this, because at first they thought you hadn’t taken anything over the weekend, therefore you didn’t “need anything now”. Then imagine them dropping you as a patient like a hot rock.

Imagine:

Without pain management, not only can you not do what you need to or want, you begin to get cranky. You lash out at your kids and spouse without reason, like an animal in pain, because that’s what you are. Imagine finally collapsing into a tired, depressed heap, contemplating the cleanest ways to end your life, to end this pain for good.

Imagine:

  • Knowing that government officials who don’t know you, who are not doctors, who don’t see your pain, assume you will abuse the legitimate medicines that make life livable for you. 
  • Knowing that these officials have made it effectively, though not “technically”, impossible to get what to you, is truly a life-saving medicine. 
  • Knowing that the “stats”, “facts”, and “research” that are behind the new laws that have made it impossible for you to get help, are very, very skewed and without actual merit. 
  • Hearing glib, pain-free people cheerfully announce that exercise, meditation, and a funny movie will remove their pain as well as any pill. 
  • Knowing that real drug abusers who have been breaking laws, can get their addiction meds, often free, while your legitimate, provable, documented, legal medical condition is treated with contempt by law makers. *Sign a petition here! 
  • Knowing that pain patients all over America, “the land of the free”, are needlessly suffering so that some politicians can look good in photo ops and in newspapers. 
  • Knowing that we don’t allow animals to suffer like the laws have made actual people suffer. 
  • Knowing that pain patients have a small voice, because they are too broke from trying to follow the burdensome laws suddenly imposed on them for things outside of their control; because they are too tired from fighting pain and doctors all day, all week, all month, all year long, to use the last of their energy to make their voices heard in politics, rather than spending time with family.

Imagine:

Spending all day trying to find another pain specialist, but being told by the first promising 4 they would not take acute pain cases, and could not recommend any one who would. Imagine calling your surgeon, desperate for help but being told their hands were legally tied. Imagine calling your primary care doctor, but being told they would not do anything, and to go to the ER if the pain “was that bad” (it’s not; you don’t need morphine injections, you just need something a bit stronger than acetaminophen, and you certainly don’t need an extra $6,000 medical bill).

Imagine not being able to take even ibuprofen, per your surgeon’s instructions, or being afraid of liver damage from too heavy acetaminophen use, or being on the phone for 5 hours, trying to find someone, anyone who can or will help.Imagine hanging up exhausted at the end of the day, and having nowhere to turn.

While nerve pain seeps into your side, your muscles begin to stiffen, and you desperately try to ward off an aching back and tailbone (you know, those parts that were recently severed and have bones, new hardware, and deep tissue working to heal) by sitting on an ice pack. The ice pack your now-defunct pain specialist told you not to use (although your surgeon recommended it), along with discontinuing those muscle relaxers your surgeon prescribed.

Imagine all this, if you can…

IMG_9222_watermark
Take a walk in my shoes

See also: On Opioids: OneYear After DEA Reforms and On Opioids: America’s Drug Addiction and the Wacky Laws that Perpetuate Them


*If you liked this post, please consider subscribing to my blog for just $1.50/month.


 

Take Action Now!

Garnering Support for Pain Patients, Media Sample Letter

Garnering Support for Pain Patients, Political Sample Letter and Petition


Learn More:

Opioid Epidemic, Drug-Mix Overdose Death

Pain Care Shouldn’t Be Political Theater