Pain Advocacy Obstacles
The pain community is vulnerable because of the very nature of pain. Patients with pain are less likely to advocate for themselves because of decreased mobility, lack of resources, isolation and the cost of medical care. Their lack of resources leave these kinds of patients at a clear disadvantage and our opponents know it, and they quietly capitalize on it. It is highly unlikely large crowds of disabled, elderly patients will co-ordinate or attend protests or marches, or even go to their local legislator’s office.
The pain community are more vulnerable because they fear they may lose all access to any legitimate pain relief, if they speak up.
In many cases, pain patient are more reliant on others to advocate on their behalf simply because they are vulnerable and occupied with managing their conditions.
With that said, it bears repeating that there are those who might attempt to capitalize on this vulnerability and push forth their own agenda without soliciting feedback from the pain community regarding the consequences that are contributing to harm.
Pain patients have traditionally been silenced about their pain. Patients are conditioned through repetition and discouraged to advocate for themselves.
Patient’s complaints of ongoing pain are not validated and patients are treated with immediate suspicion, minimized, shamed and ridiculed.
Patients are often berated for being “unable to manage their pain effectively” without the use of opioids. They are met with “disbelief” about the severity of their pain. Patients are stonewalled when people insinuate “it’s all in your head.” This prevents patients from receiving timely delivery of effective medical intervention.
See the video below highlighting Karen Smith’s story demonstrating some of the obstacles that patients with acute, chronic and intractable pain patients face daily warranting a “call to action” to change healthcare policy and social attitudes that negatively impact millions of patients from obtaining effective, cost efficient medical care with dignity.
Video Credit: Pain Management/ Karen Smith
Dr. Grinstead and Stigma
In the informative video below, Dr. Stephen Grinstead offers further insight into the obstacles pain patients face, in addition to coping with their diagnosis.
Video Credit: Dr. Stephen Grinstead
Eventually, patients can suffer complications because their pain is not intervened upon in a reasonable time frame. Their pain is subtly ignored until the pain is no longer subjective but objective, as evidenced by test results or clinical imaging or blatant and irreversible complications.
By that point, the patient has often lost their job, lost access to insurance coverage, access to medical care and in many cases have gone bankrupt trying to ascertain a diagnosis or successful medical regimen to manage their pain. Third-party administrators benefit from minimizing patient’s complaints of pain by pocketing billions in profits vs. pay for expensive surgeries or other aggressive treatment. They also profit by micro- managing healthcare providers through intimidation into utilizing “conservative treatment” or “protocols” including multi modal care, that withhold more assertive or “costly interventions” until the patient has complications, or rolls over to disability, or federal/ state aid.
It is unacceptable to place patients in a revolving door or on a hamster wheel never accessing the assertive medical care they need until they are disabled and impoverished.
Meanwhile, taxpayers get to pick up the tab for disability and third- party administrators report record earning to their stakeholders.
We won’t even go into pain patient’s psychosocial losses associated with losing their career, their income, identity, hobbies, activities, and most importantly, treasured relationships.
If a patient’s complaint of pain were acknowledged and addressed in an acceptable time-frame, poor outcomes could be avoided.
To remedy this issue, it would be necessary for the public to demand additional oversight of third-party administrator’s accountability for favorable patient outcomes.
Oh, wait…that was Obamacare and we all witnessed how third- party-administrators and partisan politics literally shut down the government over that.
It should be noted however, patient rights were completely bartered away while politicians negotiated healthcare.
However, pain is not a partisan issue- it is a human rights issue.
In the current environment, it appears that there is a overwhelming profit agenda driving opioid prohibition, and while we intend to approach these issues as bi-partisan, we can not avoid holding our politicians and government oversight agencies accountable for permitting profit before individualized patient care.
We will see you at the polls this election year 2022.
There plenty of culpability to go around on both sides of the aisle, meanwhile patients, caregivers and families suffer.
Legitimate intractable pain patients are conveniently excluded from conversations about pain, available treatments and the use of opioids as a treatment option.
This push back occurs in their MD offices, pharmacies, and around the dinner table with family and friends. It is occurring at a state/ federal level because evidently pain patient’s can not be trusted to give thoughtful feedback.
Pain is an unpleasant complex subject for everyone, but this is a conversation that must be had by society as a whole, otherwise millions of acute, chronic and intractable pain patients will be left to suffer needlessly if the “status quo” prevails.
A Call to Action
This national dialogue about opioids must include the pain community and their caregivers. We can not afford to allow others to speak for us and continue to make decisions that impact our daily lives.
Circumstances surrounding eliminating access to adequate pain management, including access to long term opioid therapy dictates that the pain community can no longer place faith in those entities or individuals who are charged with our interests.
The pain community can no longer depend on institutions who look to special interests to financially support them, to also protect and advocate on our behalf.
We also can no longer rely upon the main-stream media to portray our community thoughtfully or provide the public with the full story.
We do not have the good fortune to stand idly by hoping that what we feel is best for us, will be done. It is imperative that we take immediate and decisive collective intervention to challenge and change the status-quo.
The issue has become so skewed and complex, we can no longer rely upon figureheads, self-appointed spokespersons or other community healthcare leaders to represent the needs of the pain community.
The time has come for the pain community to advocate for themselves, using technology, social media and collaborative tools.
The narrow narrative about the pain community is changing as patients utilize collaborative tools and embrace eAdvocacy!