Patients Betrayed in Pain Management Debate
/By Pat Akerberg, Columnist
I’ve often wondered whether the term “pain management” qualifies as an oxymoron. It’s no secret that the use of opiates for management of chronic pain is a treatment strategy currently under siege – sparking polarizing debate, government intervention, and pushback by legitimate pain patients.
This is my 7th year of dealing with the intractable pain of trigeminal neuralgia (TN) in spite of many failed pain management attempts. While interacting with hundreds of my counterparts, pleas are constant for alternative ways to effectively treat this notoriously painful disorder.
Not one of them relishes the potential of being dependent on any medications that they take to manage pain and rightly fear the long-term negative effects that some medications have on our bodies.
Others whose pain is tamped down to some extent with opiate medication are placed in an untenable Catch-22. They are surrounded by volatile uncertainty and shameful character judgments.
When leading neurological experts and research scientists I saw also shared their own frustrations about the lack of alternatives to or efficacy of most pain medications, my concern heightened.
Will I be left to needlessly suffer indefinitely while this controversy stalls solutions?
From my vantage point the pain management issue seems to involve at least four different issues:
1. Some abuse of opiates
2. Reactionary guidelines that further limit or curtail availability to legitimate patients
3. Multiple competing agendas thwarting progressive strides for pain management alternatives
4. Ethical imbalance placing profits, careers, and CYA (cover your ass) strategies over patient care
Unfortunately the current proposed CDC and FDA backed prescribing guidelines are an ill fated attempt to solve the first problem of opiate abuse (by some) by worsening a second problem for many legitimate patients already living severely hampered lives. This one-size-fits-all, closed regulatory approach upsets me (even though I’m not taking an opiate) because it excludes the input of those afflicted and prolongs suffering, adding more stressful setbacks to pain relief.
Ironically, the very agencies deemed to protect us from harm seem to be intent on a stance that inflicts it in varied ways.
Until we have acceptable options to abate pain (that don’t triangulate pain patients with their doctors/the medical system and the government) or put us at risk; we’ve been involuntarily forced into some part of this fight.
This issue has been turned into such an embattled political conflict that even patient advocacy groups (with something of their own to protect) seem to be sitting on the sidelines avoiding the crossfire. Patients have become sitting ducks while others who share a stake in the chronic pain pandemic still gain by our plight.
The third problem is about the forces that work against new research, medical institutions and companies stepping up the pace and availability of affordable new pain treatment alternatives.
Haven’t they positioned themselves as stakeholders with missions to cure or improve the impact of diseases, disorders, and health threats that result in chronic pain and other debilitating effects?
One of the many forces in play is that rare diseases (known as orphan diseases/disorders) don’t impact enough people to make it financially appealing for drug companies to come up with targeted, affordable medications or institutions to fund research.
As the lusty price-hiking grab of Big Pharma continues, insurance companies will keep upping their premiums and deductibles to protect their profit objectives. While for us affordability is our burden.
Yes, the fourth problem is all about return on investment and profits weighted against some deemed acceptable number of us who will die sooner or suffer longer while living.
If you suffer from an orphan disease (like TN) you’re likely taking some off-label medication that wasn’t intended to even address your issue.
The National Institute of Health could overcome that lag to progress by applying its’ considerable leverage. It could require that research grants be granted based on collaborative initiatives, findings be openly shared across science/medical institutions, and research dollars pooled, so that discoveries and treatment innovations are accelerated for a win-win.
Why isn’t any of that happening now? Political power and financial collusions, along with competition among stakeholders, are the short answers. There’s no political, financial, academic, career, or ethically motivated profit incentive for open, unbiased collaboration to occur.
As long as our disease centered (versus patient-centered), profit over patientmodel continues, collaboration is a direct threat to all special interests since they currently measure the success of their stake in advancing medical health by their own bottom lines, career progressions, and investor return.
Until they can otherwise be held accountable to exemplary medical and just ethical standards, there’s no incentive to coalesce and dedicate their collective resources to resolving the pain management needs of millions of pain sufferers.
It’s the medical/scientific version of our political underbelly, with pain patients involuntarily caught in its’ snare while progress sputters. The result is that effective pain management has been hijacked and diminished medically into a political football playing brinksmanship with the quality of our lives.
There’s so much wrong with how the whole “pain management” situation is evolving for us. The real blow in all of this for me is the realization that pain patients seem to be left with no representation or clout.
Without representation, I’m concerned that while we’re the ones least able to deal with it; we’ll be left holding the bag to gain more attention, commitment, and reform for real pain management answers.
I worry about precious time toward new alternatives wasted while the powerful lobby agendas, the government over reaches, our representation retreats, the AMA debates, and the profitable jockey to vindicate their approach.
Until then, it’s hard not to feel betrayed by the downward spiral in societal values, a slippery slope of collusion allowed to operate among some interests convincingly indifferent towards human suffering.
I really want to be proven wrong about pain management becoming an oxymoron.
Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.
