Without a Voice
By Wendy Sinclair
In Oregon, Commissions, task forces, and other decision-making groups who create directives such as proposals, guidelines, policy, and education for chronic pain patients (CPPs) are comprised primarily of people who subscribe to an anti-opioid ideology that broadly labels intractable pain sufferers as addicts simply for utilizing effective medications to manage painful conditions. Many of the groups’ members are participants in addiction focused groups such as Oregon Pain Guidance (OPG), Synergy Health Consulting, and Lines for Life. This unbalanced membership establishes a lack of representation for CPPs with no (or, at best, very few) seats occupied by members holding an opposing (pro-pain patient) ideology.
Because of this slant, the decision-making groups apply addiction principals to create directives for nonaddicted CPPs. Their hefty influence results in inappropriate medical treatment. Oregon advocate and intractable pain patient with a progressive disease, A. Moon says, “If members of these groups don’t have experience treating non-addicted incurable pain patients, if they don’t understand the benefits of long-term opioid treatment, then they can’t make proper decisions for disabled patients like me.”
Oregon advocates, including Moon, have asked for change in the groups’ memberships, so CPPs are represented by providers who are knowledgeable about their intractable medical conditions and participate in utilizing effective long-term opioid treatment. They also requested seats for non-addicted CPPs with a pro-patient perspective to balance the conversation. Moon asserts, “I can’t be rehabilitated.” She says her needs are different then someone with a curable condition. So far, Moon’s requests for satisfactory representation have been repeatedly denied or ignored. She has been in advocacy for several years and has witnessed firsthand the regulatory takeover by individuals with conflicts of interest, bias agenda, and anti-opioid ideology regardless of the harm inflicted. The unbalanced groupthink is allowed to continue because there is zero execution of oversight. She says, “It’s terrifying.” And it’s happening in the state she relies on for her medical care “to survive.”
Instead of realizing this deficit, changing course, and filling vacant seats in the groups with pain patients, advocates, and their providers, the groups continue to push and protect their dogmatic philosophy by filling available spots with members with the same biased views. When a vacancy is present, group members will vet applications limiting the options to only those with the same ideology, thereby ensuring no other perspective will have a place in the conversation. Many of the acceptable applicants hold multiple seats. This kind of recycling and cherry-picking creates a huge injustice for CPPs.
Some members with conflicts of interest (COI) have played significant roles in policy. In addition to obvious COI, most of the people who are included in the conversation stand to benefit financially from the changes to pain treatment which could be considered a conflict. Moon feels this has a lot to do with the directives that are passed. She is worried that when groups have only members who are addiction specialists, physical therapists, and acupuncturists and the resulting policy says only physical therapy, acupuncture and addiction treatments are effective, that this shows a conflict with slanted results. She says, “it’s too coincidental.”
Jim Shames, certified in Addiction/Family Medicine, is the chief medical officer for Synergy Health Consulting, the founder of OPG. He was the founding physician and Medical Director of the Siskiyou Community Health Center. He also worked for La Clinica and served as the Medical Director of Allied Health Services. He provided Medication Assisted Therapy (MAT) for addiction and opioid use disorder for twenty-five years. He was part of the Oregon Health Authority’s 2016 Opioid Prescribing Task Force and was on the Oregon Epidemic Task Force. He was also formerly a member of the Governor’s opioid task force. He is a proponent of the anti-opioid groupthink, which has been incredibly devastating to CPPs.
In his presentation, he appears to endorse coercion via incentives like financial support, food, and “Threats (fear of Board action)” to get “them to the table.” This seems like a way to pressure providers to engage with his group, regardless of their desire or agreement with his narrative. Why are they threatening providers with Board action and using fear to seemingly manipulate providers? Is the Board in agreement with this and have they participated in the threats?
The Medical Board’s Summer 2021 newsletter refers readers to OPG’s Prescribing Guidelines instead of the Oregon Health Authority’s Opioid and Taper Guidelines which were vetted through public comment process. The Oregon Health Authority (OHA) is a government agency with clear processes for passing guidelines which includes public input and transparency. It has oversight via the Oregon Health Policy Board. So why use guidelines from OPG when OHA’s are available?
OPG and its members have had a substantial impact on CPPs. Considering the influence, they’ve been granted, the hope would be that they would hold views of compassion for those they stand to affect. However, in OPG’s Pain Treatment Guideline page, NOT addiction page, OPG calls those who are DEPENDENT on opioids (dependence isn’t addiction) “a challenge to treat humanely and effectively.” They also call disabled and CPP patients a “lost generation.” (The term, with this usage, was coined by Jane Ballantyne who has been paid as an expert witness in opioid litigation.) Should someone who considers CPPs a lost generation have any part in making directives for them that will drastically impact their wellbeing? Where is the public outcry? If this label were thrust onto another protected class, would it be accepted, repeated, and upheld? But in this situation, the label is echoed in presentations and by influential individuals (Dr. Paul Coelho, Laura Heesacker and Jim Shames, and Gary Franklin) without fear of reprisal. Moon feels like they are shaming CPPs, and they get away with it because there is no accountability from state officials. She says, “pain policy in the state of Oregon has been hijacked by anti-opioid zealots.” This “radical” group of people have been given “ultimate power to destabilize an entire community of disabled Oregonians without liability.”
In a lines for life presentation, which appears as part of the 2020 National Resource Center for Academic Detailing, Jim Shames uses pictures of a rally where pain patients advocate for their rights, and he labels them as, “Pushback.” Moon was among the advocates in attendance. She responds to this label. “What Dr. Shames calls ‘pushback’ was in fact a brave and momentous effort by pain patients who live with incurable pain conditions, many of whom are disabled.” She is concerned that the photos weren’t only misused, but they were used to publicize his agenda which is the opposite of what they depict. “On two separate occasions Dr. Shames used pictures of patient advocates to promote his own narrative and agenda.”
Also, in the above-mentioned presentation, Shames states, “There is a consensus exemplified by CDC guidelines: It is generally unsafe and inappropriate for sustained opioid doses >50 MME.” He shows a picture containing the CDC guidelines. Here is what the guidelines say from the image in his presentation:
When opioids are started, clinicians should prescribe the lowest effective dosage. Clinicians should use caution when prescribing opioids at any dosage, should carefully reassess evidence of individual benefits and risks when considering increasing dosage to ≥50 morphine milligram equivalents (MME)/day, and should avoid increasing dosage to ≥90 MME/day or carefully justify a decision to titrate dosage to ≥90 MME/day.
The CDC guidelines are written for primary care providers, not pain specialists, yet Shames doesn’t mention that in his interpretation. Also, the CDC themselves have admitted to harms resulting from the misinterpretation of their guidelines and forced tapers. Therefore, they organized a task force to revise their guidelines. Yet, Shames is taking the guidelines so much farther than the CDC. This is possibly what is recognized as misapplication of the guidelines. Why does Shames go further than the guidelines to try to prove his point? How many people will be misled and harmed because of his misrepresentation of the CDC guidelines?
In another presentation, Shames called CPPs one of “The Future Challenges.” Under this heading he shows a picture of Oregon Pain Action Group members protesting and demanding a voice, but Shames characterizes them as “frightened patients.” Again, is the labeling appropriate for any protected class of Oregonians? Advocate and pain patient Moon is alarmed that Shames depicts the patients as, “frightened and misguided. He infantilizes them.” She shares that this protest was part of the effort that prevented an unethical policy from passing. She believes the labels wouldn’t be tolerated except that the anti-opioid effort has resulted in, “shaming, hatred, stigma, distrust, and discrimination against pain patients who utilize opioid medications safely and effectively.” With disappointment Moon explains that she has lived the results of a societal turn against people who have disabilities that involve severe pain.
In Shame’s presentation, he advises patients who he calls “difficult,” to be transitioned to buprenorphine. Often a patient is labeled “difficult,” just because they disagree with being force tapered. So, some are transferred to a medication often associated with Medication Assisted Treatment (MAT) for addiction use (opioid use disorder), even though they are not addicts. Buprenorphine can be helpful for some patients and for some conditions, but it is not appropriate for everyone. Individualized medical care helps protect patients from inappropriate medication, but blanket limits and mandating specific substances doesn’t serve the patient’s best interest. Curiously, in the Summer 2021 Oregon Medical Board’s newsletter it seems they are now advising the same thing. “As much as possible, patients should be transitioned to Medication-Assisted Treatment (MAT) — buprenorphine-based treatment.” This is without a qualifier for addiction. The FDA recently warned of a concerning serious side effect from buprenorphine which makes it inappropriate for some patients, especially those with genetic conditions causing compromised tooth enamel. There is a growing number of complaints from patients who have lost all their teeth or have had significant damage because of using buprenorphine-based medication. Yet, the Board is advising providers to transfer their patients from their stable medication to something that could harm them. Shouldn’t the Board advocate for individualized medical care and not blanket treatments that deny the specifics of a patient’s needs?
There are no longer safeguards in effect for CPPs in Oregon. Previously, The Oregon Pain Management Commission provided a layer of protection for patients. They were created legislatively for the purpose of being a buffer to bring patients’ concerns to the governor and otherwise protect patients and their concerns. Initially, they requested passage of an outstanding bill to protect patients. They no longer seem to serve that purpose, and the bill seems to have been manipulated, so it no longer protects anyone. In addition, OPG members or owners have infiltrated the Oregon Pain Management Commission, which is extremely detrimental for chronic pain patients because of the Commission’s legislated responsibility to create an educational toolkit for pain care. All providers who offer pain care are mandated to utilize continuing education through their toolkit, but now it is corrupted with the anti-opioid agenda.
Where does that leave underserved chronic pain patients? Advocates have asked their legislators, the Governor, the OHA, and other groups to give them a voice, be that layer of protection, or provide oversight to overstepping groups, but the requests haven’t yielded anything so far. Moon is concerned that the biased members in the groups have “thrust unproven methods on an entire community of Oregonians” and that their directives have destabilized patients “who have done nothing wrong except rely on effective medications for quality of life.” Patients have no one to turn to, no organization who will help. They have no way to fight back.
Intractable pain patients are labeled, shamed, and discriminated against. They’ve lost their rights in exchange for ideologies that have become almost “law” without quality evidence, protections, or representation. They are fighting against a biased agenda that’s gained purchase nationwide. It’s become so ingrained that many justify ignoring the injustices it causes. The cost is incredibly high for Americans with intractable painful medical conditions.
In conclusion Moon laments that her state has failed its citizens. When she was younger, she dreamed of living in Oregon partly because of the beauty, but mostly because of the health innovations and compassionate care the state was known for providing its residents. As a CPP, quality health care needed to be prevalent in the place she lived. Early in her residency, she experienced quality healthcare, but unfortunately in recent years Oregon has been unsuccessful in meeting her medical needs. In the process of trying to manage her medical conditions, she has been shamed and feels Jim Shames and others with the same groupthink have created the degradation in the chronic pain community. She shares that her state has refused to protect vulnerable patients who live with incurable painful conditions, “and has taken an antagonistic stance causing suffering, hardship, and sometimes death while blaming patients because they use medications to manage their pain.” She is unable to move but she fears the cost to her health, by staying, may be more than she can afford. She states that she no longer wants to call “this place” her home.