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LIFE WITH INTRACTABLE PAIN

A three part series offering a case study of the problems confronting potential patients in Minnesota's medical marijuana program.

Mathew Somlai

Life with intractable pain, part 1: Adapting to agony

 

            The following is the first in a three part series examining Minnesota’s medical cannabis program and eventual inclusion of intractable pain as a qualifying condition.  As an ethnographer, trained in the analysis of urban organizations, I felt the need to investigate the cultural narrative being told as well as how those with chronic, intractable pain are affected by the unfolding story.  The resulting account moves between a chronological overview of the medical cannabis program over the last two years, and the history of a Northeast woman and her husband trying to get access to the program’s services. 

            Other than my interviews with the couple, who will remain anonymous, my sources and citations rely solely on publicly available, easy to find materials.  This provides interested parties opportunities to check facts and find out more on the topic.  It’s critical to understand the experience of a chronic pain patient trying to wade through the process while seeking healthy options.  Minnesota Statute 152.125 defines intractable pain as pain that cannot be removed, relieved, or cured through “the generally accepted course of medical practice.”  This report describes the firsthand experience of a woman living with pain that has not been relieved by the accepted course for decades.

 

            Jean is a professional artist, semi-retired after her most recent move to the center of the arts world that is Northeast. Her semi-retirement is not voluntary. 

            For 40 years of her professional career, she has been able to adapt her craft and learn new skills given the ever changing context of her body. Crohn’s Disease and short bowel syndrome after a dozen surgeries dropped her to 80 pounds, forcing a switch from award winning textile work to beading (quilts became too heavy). Peripheral neuropathy then numbed needed fingertips … just when her 5’ x 6’ piece made of 500,000 beads hand sewn to linen was featured in 500 Beaded Objects.  She adapted again, moving to sculptures of larger beads that she hand cut from old tins. 

            Cataracts, undiagnosed scoliosis that quickly became a 45 degree bend given 40 years of a Crohn’s influenced diet, sleeping only two hours at a time (sitting up), and a new diet simply of cheese, butter, and crackers (the only foods no longer obstructing her Crohn’s scarred intestine) left her with no energy or motivation to do the sculptures anymore.  She moved to teaching her children and grandchildren and working on small, low energy projects and crafts that piqued their interests. 

            Any artist knows how lonely a studio can be.  Add the pain of a broken back, sores from extremely thin skin, nutritionally deficient skeletal aches, and the now all too familiar agony of intestinal blockages and neuropathy, and no one should hold her accountable for choosing to work with family when she can, pausing the big pipeline of ‘finished product’.

 

            In May of 2014, the Minnesota Legislature passed the Medical Cannabis Therapeutic Research Act, establishing “a patient registry program that allows qualifying patients to use and possess cannabis for medical purposes,” according to the State House’s own information brief on the act.  According to the Minnesota Department of Health’s (MDH) website, soon thereafter the Office of Medical Cannabis (OMC) was created and began to hire personnel.  A state task force was created, manufacturers applied to participate, meetings were held to inform the public, and by the end of 2014 rules were created and two in-state manufacturers were registered.

 

            Jean and her husband of 45 years, Michael, slogged through multiple avenues of therapy and treatment, at times causing even more side effects and problems that had to be re-treated years later.  A friend who had terminal cancer and lived in Colorado shared some cannabis oil with Jean.  It worked – she could sleep for longer than two hours at a time and experienced breakthrough relief without the resultant haze of opioids.  They considered moving to Colorado for treatment, however decided to move to Minneapolis to be closer to family – who Jean says are her best treatment.  Their decision was aided by rumblings about medical marijuana on the horizon in Minnesota as well. 

            When the act passed, Jean’s doctor began the conversation about getting Jean registered.  Crohn’s Disease, one of the conditions listed as eligible for patient registration, was enough to get the ball rolling, and her doctor said they wouldn’t have to wait for the possibility of intractable pain being added as an eligible condition later in the year.  According to Jean, as well as e-mails she made available to me, her doctor was extremely excited to help Jean, as well as learn the process himself.  He often made it clear how impressed he was with Jean’s and Michael’s routine of pain management, given limited options available.  He even stated that he was looking forward to learning from them, given the years of bureaucratic red tape they waded through with medically mediated pain management programs. 

            The doctor approached his pharmacist, who relayed the rules and paperwork needs, and everything seemed ready to move as soon as the system was in place. 

 

            According to MDH, from the winter of 2014 to spring of 2015, the OMC finished hiring and completed outreach and education of interested parties.  It seemed like everything was set to go for the June 1 beginning of applications.  As made clear on their flowchart, and as pharmacists made clear to doctors, the health care practitioner was there simply to certify the patient had a condition that qualified for the program.  After certification, the patient registered and paid an annual $200 fee and then was able to pick up pills, liquid, or oil based cannabis at eight different patient centers.    

 

            Around February 2015, Jean’s doctor said he wanted to cement the plan with her, and asked her to send a reminder email to him for June 1 applications.  He wanted to get it going the first day for her.  Spring 2015 saw Jean lose many of her available pain medications.  A patch that had been helping with debilitating spasms in her back was now denied by insurance.  She had to go to a cheaper version that caused lesions to appear on her skin and get infected.  Having just gotten over pneumonia, another infection was not needed.  Z Pacs, antibiotic creams, steroids to help with new Crohn’s flare-ups, cheap pain relief, and the ever present opioids continued to be prescribed and covered.  Things that decreased pain and increased life quality – massage, physical therapy, yoga, acupuncture, acupressure, patches created specifically for individuals with problematic skin given nutritional deficits – were either denied, or necessitated multiple levels of paperwork and pre-certification to be covered. 

            They waited, and went with the cheaper, more harmful options knowing that soon she could use cannabis liquid and suckers.  She looked forward to dropping her opioid intake by three fourths again, as she did when she had been able to use some of her friend’s liquid.  She looked forward to a mental clarity that neither opioids nor agonizing pain allowed.  She preferred being able to take just enough liquid to diminish the pain and not feel any mental effects.

            Around this time, she got to see that there had been a problem with her files because she had been listed as ‘opioid dependent’.  She had become bureaucratically listed as an addict – basically addicted to not having scream-worthy pain constantly.

            On May 19, 2015, Jean and Michael reminded her doctor that June 1 was coming near.  He replied that everything was good and on track.  May 27, he sent them an email that, due to clinic wide decisions, he would not be registering as a Health Care Provider able to certify patients, and that Jean may want to look elsewhere for another provider.  They could talk about it at their next meeting.  At her next appointment, Jean went half an hour early, waited an hour and a half, had her back spasm, and had to leave.  The doctor finally brought up the decision at an appointment six months later, but the entire issue was simply put to rest when Jean explained that, while she could understand the lack of power one doctor had on clinic wide decisions, she remained disappointed in the lack of advocacy for patients.

 

*

 

Life with intractable pain, part 2: Throwing a party that no one attends

            In June of 2015, LeafLine Labs hired Manny Munson-Regala as its new Chief Executive.  LeafLine is one of two state growers and suppliers of medical cannabis.  Munson-Regala previously served as Assistant Health Commissioner and was, according to a Star Tribune article from June 12, integral to organizing the Office of Medical Cannabis. 

            According to a later report by CBS Minnesota (August 12), released e-mails showed nothing was illegal in this.  Other lawmakers have responded that illegal and unethical are two different things.  The same report also stated that nothing was found to be illegal in Dan Schoen becoming the head of security at LeafLine, even though he co-sponsored the original medical marijuana bill in the legislature.

            July 1 came and went and the expected deluge of patients on the registry became a handful.  All around the state, individuals shared similar stories to Jean and Michael’s that clinic wide decisions and policies effected whether their providers would be allowed to certify patients or not.  One reason hinted at was that some clinics did not want patients shopping around within the clinic for certifying providers.

            Tim Nelson’s article about the lack of registered patients (MPRNews, July 17, 2015) stated that only 183 patients were registered a couple of weeks after opening when the state was projecting 5,000 eventually.  The rest of his article offers, from the point of view of the doctors, the problems of legality, questions of efficacy, and lack of doctor oversight of dispensation as reasons for low provider participation.  Some of the doctors in Nelson’s article went on to say that there may actually be low interest among patients as well.

 

              In June, after Jean’s doctor reversed his decision to certify Jean for the program, Jean and Michael contacted a company that offered to connect patients with providers willing to certify.  The company had a good reputation of performing similar services in other states.  Several communications later got Jean in contact with a provider. Within a few days, the company emailed again stating that Jean’s meeting with the provider was put on hold because the state was closing down the company’s efforts.  Later, after the company seemed to have cleared up legislative issues with the state (and finally figured out their own costs of doing business in Minnesota), they informed Jean about the full cost of their services.                                                                                                            

            $380 would cover the initial evaluation.  Monthly visits after that would cost $175.  Of course she would still have to send in the $200 annual fee as well.  All before actually paying for and getting any form of cannabis.  $800 to just get in the door.  This was during a time when Michael had to pull out early funds from their retirement, as well as sell their small camper used for cheap get-aways in Wisconsin, just to cover uncovered, but more efficacious, medicines for Jean. They responded and said no thank you to the company, at one point again looking at moving to Colorado.

           

            Given the requirement for the Health Commissioner to determine whether intractable pain was a qualifying condition by January 2016, MDH created an advisory panel as well as set up several public meetings to voice support or concern.  The panel included a Pharmacy Manager, MD’s, Physician Assistants, an RN, a PhD, and a social worker.  All of them were chosen from individuals who applied to be on the panel.  None of those on the panel self-identify as being a patient with intractable pain.

            From July to October of 2015, OMC (with the help of the government’s in-house consultants, Management Analysis & Development - MAD) collected public comments.  These included comments that were written or transcribed at listening sessions with OMC and public meetings with the advisory panel, as well as comments that were entered into a website, according to the publication, “Public Comment on Adding Intractable Pain as a Qualifying Condition for the Minnesota Medical Cannabis Program,” (created by MAD and found on the MDH website). 

            The publication states that there were around 417 individuals who were willing to provide comment.  Of those, 388 provided comments distinctly in favor of adding intractable pain as qualifying.  Three pages of the publication were filled with quotes from their comments.  MAD summarized pro comments as revolving around the themes of cannabis being safer, more effective, and with fewer side effects.  Fifteen commenters were opposed.  Their comments also filled three pages of the report.  MAD found their comments to revolve around risk of abuse, adverse effects, and that there is inadequate research showing cannabis benefits. 

           

            Jean wanted to go to a public meeting with the advisory panel, but heard beforehand that the only scheduled time for individuals with intractable pain to present concerns would come through a general public comment period.  “There’s not a single patient on their panel.”  A bit patronizing and arrogant for her tastes.  Jean said that on top of all that, the only comments she could find from government officials simply reiterated the fact that possession of small quantities was still only a misdemeanor.

 

            Come November, and there were only 741 patients on the registry (the up-to-date numbers are available at http://www.health.state.mn.us/topics/cannabis/about/stats.html).  The advisory panel also made their majority recommendation – Don’t add intractable pain as a qualifying condition for medical cannabis use.

            Interestingly, the recommendation was not as clear cut as it seemed after reading MAD’s other publication on the MDH website, titled “Panel Recommendations on Adding Intractable Pain as a Qualifying Condition for the Minnesota Medical Cannabis Program.”  There we find that MAD surveyed the panel members prior to their final meeting and found 5 members were in favor of adding intractable pain, while 2 were against.  After that last meeting – 3 were in favor, and 5 against.  Reasons revolved around the fact that cannabis is not a “magic bullet”, pain is complex and subjective, lack of research, need for interdisciplinary approaches, and caution on the part of providers regarding “another potentially dangerous medication” – referring to the “recent opioid crisis”.

            What exactly happened at that fourth and final meeting?  There are no publicly available minutes for that meeting at http://www.health.state.mn.us/topics/cannabis/intractable/advisory.html, although minutes for the preceding three meetings can be found there, so it’s hard to tell.  However, given minutes from the other meetings, the picture becomes clearer.

 

*

 

Life with intractable pain, Part 3: Finding a way to endure 

 

            The first panel meeting revolved around a presentation from Dr. Miles Belgrade, the Medical Director of Pain Services at Fairview Pain Management Center.  His slides can be found on the MDH website, but basically they revolve around the concern with opioid over-prescription, the lack of efficacy of opioids, and the need for interdisciplinary approaches that connect mind and body in pain management.  It is in the Q and A though where we begin to see the professional portrait of chronic pain patients that informs these meetings.  The full minutes can be found at http://www.health.state.mn.us/topics/cannabis/intractable/qa061515.pdf. In all fairness, Dr. Belgrade’s responses are transcribed and thereby summations of answers paired to specific questions.  But the pieces that send alarms through endurers like Jean, and were repeated in subsequent publications and minutes, are provided below:

            “[Chronic pain and suffering] are different.  I saw a patient with severe neuropathic pain.  He’s not suffering; he would just like to see improvement.”

            “Thirty to fifty percent of people with chronic pain have a personality disorder, and that makes it harder in our clinics and on opioids.  … some personality disorders by nature are anti-rule.  So they don’t follow instructions.  But this applies to every high-risk treatment or treatment that requires good communication between the caregiver and patient.”

             “My experience is users are as likely or more likely to want to continue their opioid medication and continue at the same rate.  No one has asked to be taken off the opioids.” 

            [Responding to whether medical cannabis is safe and effective.]  “Yes, but if I thought for a second I could get a patient off opiates by using cannabinoids I’d do it in a heartbeat.”

             “How do you diagnose chronic pain?  It’s really subjective.  That’s why I struggle with intractability.  Because often there are other options that they may have tried but never truly engaged in and found something to focus on that they got joy from.”

           

            The second meeting focused on public testimony.  According to meeting minutes, twelve individuals offered testimony.  Most of them, from the transcriptions in the minutes, have heartbreaking narratives of pain and loss often overcome through the use of medical cannabis.  Most of the individuals pleaded for the panel to not only make intractable pain a qualifying condition for medical cannabis, but to help loosen the restrictive definition of intractable pain.  In regards the ongoing cultural narrative, it’s important to note that the only individual who received more than one follow up question self-identified as a Medical Director at a St. Paul based pain clinic. 

            The third meeting dealt mostly with addiction.  In the meeting’s minutes, “Things that were surprising or caught attention” bulleted six cautionary or anti points before getting to one supportive point – “Medical cannabis may be beneficial for neuropathic pain.”  Under “Things that the advisory panel found helpful” there are four bullet points about cannabis before getting to “Did not hear about fatal marijuana overdoses.”  “Key points to keep in mind” empathetically begins with “Benefit to the patient is first and foremost,” and then moves to not enough research, patients uneducated about other pain remedies, needs for a “holistic” system, and “hassle factors” in becoming certifiers. 

 

            Many chronic pain patients have tried hundreds of creative and innovative methods to allay pain as well as the biophysical, social, and emotional aspects, of which they are all too familiar, on their way towards being labeled as ‘intractable’.  Yet, as seen in the materials, ‘subjective’ is used pejoratively and ‘not enough research’ is bandied about without care.  Jean agrees that the best research would be to strap a curling iron to one’s backside, turn it on and wait a week, and then see how one’s body responds to ‘pain is subjective,’ ‘more research is necessary,’ and ‘you haven’t looked for avenues outside meds.’

            Jean and Michael put it bluntly: “What’s the name of the act?  The Medical Cannabis Therapeutic Research Act.  But, not only is there no discussion of the program in terms of research – control groups, etc. – but then they double team you with the notion that there’s not enough research to utilize the therapy in experimental ways.”

            More to the point, if pain management is subjective – more art than science – Michael asks, “Why are the anecdotal, direct patient experiences given such little value in the quest to manage pain?”  Given the advisory panel’s final recommendation, it is easy to see which subjectivities are given more weight, and easier still to empathize with endurers who feel unheard and patronized.

 

            December arrives.  According to an MDH news release, the Commissioner will add intractable pain as a qualifying condition.  He made the “right and compassionate choice” even given the “scarcity of firm evidence.”  The panel’s oppositional recommendation is seen as simply reflecting “the complex and divided views on the topic.”  The news release is rounded out by references to safeguards against misuse built into the system, an urging for care and scrutiny, and the needs of education, guidance, and a broader conversation.

 

            Jean is not celebrating in the streets.  Don’t get her wrong, she’s happy that, come six months from now (intractable pain patients cannot be certified until July 2016, and cannot pick up meds until August), she and many others with intractable pain may be able to get a chance to find a provider who is not part of a clinic refusing certification.  She will simply have to, once again, wade through a narrative that is negative, distrusting, full of patient blame, and near paranoid in regards what ‘these patients’ want.  Michael even wondered whether intractable pain would have actually been added if more than 800 people had signed up with the first go around and prohibitive cost wasn’t an issue right now.

 

            In spite of this ‘victory’ it’s tough to argue with patients who feel their activists left for high paying jobs, their doctors err towards legalese over empathy, their pain release euphoria must remain hidden given the general expectation of a ‘noble fight,’ and they will have to over rate pain since coping stoicism is seen as not suffering.  In fact, the MDH definition of intractable pain – unable to be treated by any other accepted method – inherently sets a stage for years of trying everything else before cannabis certification.  All while that curling iron bores into bones and someone asks, “Why are you addicted to turning it off?”