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
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.
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.”
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?
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.
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?
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)
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!”
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.
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/