Pain Advocacy Coalition is a loose knit collaborative group of patients who live with intractable pain. We are your co-workers, neighbors, friends, and family members. We are a collaborative group of former police officers, former nurses, researchers, technical writers, social media consultants, medical assistants and other varied professional backgrounds. We all share one common bond, we live with chronic pain daily, and many of us use opioids as a treatment modality to help us manage our pain effectively. We are not a volunteer organization. We are a tribe of individuals who are crowd-sourcing a solution to a common problem impacting our lives via collaborative tools. We are inviting the pain community to participate.
The medical administration of opioids for analgesia are utilized in tandem with other medical treatments, individualized to the patient’s needs, and are implemented only when other treatments are not successful for relieving pain. The use of prescribed opioid analgesia permits us to successfully participate in activities of daily living and to meet our obligations.
Opioids, when used as an analgesic, allow us to redeem some quality of life from intractable pain. Often, we experience only partial relief from analgesics. We are not able to participate in our lives at the same capacity as we once did prior to becoming pain patients. However, without opioid analgesics, many of us would decline further, experience decreased mobility, increased pain, decreased productivity and other negative outcomes.
The “opioid crisis” and the implementation of draconian policies by Center for Disease Control (CDC) that restrict prescribing opioids for legitimate pain patients have mobilized the pain community to coalesce and address the negative impact these policies have had on our community.
The Pain Advocacy Coalition grassroots movement is dedicated to addressing the “opioid crisis” by:
- raising public awareness about the impact of pain on patients, both acute and chronic
- bringing transparency to the negative impact the Center for Disease Control’s guidelines have had on the pain community and their healthcare providers
- challenging the status quo and empowering pain patients to utilize collaborative tools and platforms
- participating in a national conversation about our healthcare decisions that previously the pain community has largely been excluded from
- restoring the patient- physician- pharmacist relationship
- preventing detrimental special interest and government interference in the provision of medical care
- challenging stigma, discrimination, profiling, narrow narrative and marginalization that contribute to the obstacles and barriers that pain patients experience
- challenging the media to to offer the public balanced reporting about the “opioid crisis” including equal time outlining the impact to pain patients (acute/ chronic) and the medical community at large
- challenging the methods by which data is obtained, research is conducted, how research is funded and how statistics are being utilized to make individual medical decisions from a board room, a legislative office, third party administrator’s office or an oversight office
We intend to bring transparency to restrictive policies that are not thought of as patient-centric, but are more accurately described as profit driven. For a more expansive examination of this complex issue, check out the Pain Advocacy Coalition’s Platform.
For an expanded look at the issues pain patients across the country are facing check out this recent news report by I-team reporter George Knapp and his fellow reporters courtesy of LasVegasNow- KLAS-TV-8 report published on December 1, 2017.
The Other Side of Opioids #OurPain
“Millions of Americans who rely on opioid medications for pain relief are in anguish because of government pressure to reduce prescriptions across the board. Doctors, pharmacists, and other providers have already made drastic cuts in the amount of pain medicine they dispense, with more cuts on the way.”
Video Credit: Matthew Adams
As a result of these changes, the Pain Advocacy Coalition is extending an invitation to everyone to join our #ShareOurPain initiative to advocate for patients and their caregivers to preserve treatment options for patients who are experiencing pain.
Inevitably, the intractable and acute pain community will need to stand together.
Video Credit: Advocates Children and Youth
Prevalence of Pain in 2012
Patients who use opioids to treat legitimate intractable pain typically have exhausted all other modalities. The pursuit of a non-opioid treatment option or “conservative treatment” can lead to medical bankruptcy and/ or medical complications before the use of opioids is implemented.
The National Health Interview Survey 2012 (NHIS) that 25 million people in the United States suffer from chronic pain.
The survey goes on to explain:
The Center for Disease Control (CDC)’s NHIS is an annual study in which tens of thousands of Americans are interviewed about their health- and illness-related experiences. The 2012 NHIS asked participants about the frequency and intensity of pain experienced in the prior 3 months. The survey results are based on combined data from 8,781 American adults from a subsection of the larger NHIS.
Researchers assigned pain severity using an approach developed by CDC investigators working with the Washington Group on Disability Statistics, which provides four categories of pain.* Among the findings of the analysis:
- An estimated 23.4 million adults (10.3 percent) experience a lot of pain.
- An estimated 126 million adults (55.7 percent) reported some type of pain in the 3 months prior to the survey.
- Adults in the two most severe pain groups were likely to have worse health status, use more health care, and suffer from more disability than those with less severe pain. However, approximately half of individuals with the most severe pain still rated their overall health as good or better.
- There were associations between pain severity and race, ethnicity, language preference, gender, and age. Women, older individuals, and non-Hispanics were more likely to report any pain, while Asians were less likely.
- Minorities who did not choose to be interviewed in English are markedly less likely to report pain.
- The impact of gender on pain varies by race and ethnicity.
“This report begins to answer calls for better national data on the nature and extent of the pain problem,” said Richard L. Nahin, Ph.D., M.P.H., lead epidemiologist for NCCIH and author of the analysis. “The experience of pain is subjective. It’s not surprising then that the data show varied responses to pain even in those with similar levels of pain. Continuing analyses of these data may help identify subpopulations that would benefit from additional pain treatment options.”
Americans Are Still in Pain
In 2015, NIH introduces a new analysis of the 2012 NHIS information that further addresses the prevalence of pain by stating:
It found that an estimated 25.3 million adults (11.2 percent) experience chronic pain—that is, they had pain every day for the preceding 3 months. Nearly 40 million adults (17.6 percent) experience severe levels of pain. Those with severe pain are also likely to have worse health status. The analysis was funded by the National Institutes of Health’s National Center for Complementary and Integrative Health (NCCIH) and was published in The Journal of Pain.
“The number of people who suffer from severe and chronic pain is striking,” said Josephine P. Briggs, M.D., director of NCCIH. “This analysis adds valuable new scope to our understanding of pain and could inform the National Pain Strategy in the areas of population research and disparities. It may help shape future research, development, and targeting of effective pain interventions, including complementary health approaches.”
Read more about the 2012/ 2015 NIH reports.
To summarize, 126 million patients experience ongoing pain for 3 months consecutively in a one year time frame. There are 25-40 million people who suffer chronic pain and require long-term intervention.
Intractable pain does not go away, and it can be fatal in some cases if it is left untreated. The CDC has initiated supposedly voluntary guidelines about the prescribing of opioids by primary care physicians, but those guidelines have become draconian policy, eroding the patient-physician- pharmacist relationship.
For these reasons, our collaborative group supports patients experiencing all forms of pain and their healthcare providers to provide an individualized plan of care. We believe that long-term healthcare decisions should not be unduly influenced by special interests, government agencies or policy makers.
The decision to add opioids to an individualized plan of care is implemented only after the patient experiences a significant decline in function and productivity. Opioids to treat chronic pain are administered by medical professionals who currently utilize strict guidelines and stringent oversight with an emphasis for patients to regain their mobility and participate in their activities of daily living.
A prohibition of opioids will not stem the tide of illicit Fentanyl from streaming over the United States (US) borders nor will it stop unintended overdoses. However, opioid prohibition will prevent millions from successfully participating in their daily lives at their fullest capacity.
With that said, we are not callous to the significant loss of life for those who have lost their lives due to illicit opioids flooding across the borders into our country, and we offer our sincere condolences to everyone who has experienced such sorrowful tragedy.
Center for Disease Control Guidelines
Due to healthcare policy changes, many patients have lost access to the only treatment that is effective to relieve their pain. Patients are reporting they are being forced to taper medications. They also report being unable to refill their opioid prescriptions at pharmacies. Physicians are implementing drastic measures based on “following” the Center for Disease Control Guideline restrictions on prescribing opioids.
The CDC guidelines were never originally intended to impact patients with chronic pain. The new guidelines were voluntary and aimed at primary care physicians not pain management physicians. As it stands now, niether primary physicians or pain management physicians want to care for patients with intractable pain because we are a “liability.”
The implementation of these new guidelines have created a snowball effect. This resulted in both primary care and pain management physicians rapidly “dumping patients” who are prescribed opioids out of sheer concern for their license and assets. Healthcare providers have been made “examples of” by the drug enforcement agency (DEA), by arresting and prosecuting physicians for failing to follow CDC’s new guidelines.
The idea of voluntary compliance seems to have been lost in the hysteria.
Our opinion is the CDC guidelines is based on flawed research, driven by special interests and by DEA over-reach. A narrow mainstream media narrative and public hysteria has also contributed to a negative outcome. This combination has resulted in a failed drug policy that has created “pain refugees” being “dumped” by their healthcare providers leaving them with few, if any treatment options for their pain.
The guidelines were implemented without sufficient planning or viable options for the pain community to turn to for alternative treatments that are effective. Let’s clarify, equal to the effectiveness of opioid therapy for analgesia. There are a lot of faux designer patented drugs out there, but they are expensive, fraught with side effects, and often they don’t work.
These issues are further magnified by extreme healthcare bias, discrimination, marginalization, and social stigma based on misinformation about the complexity of the pain phenomena.
Pain is now the “new leprosy!”
Actually, pain patients are now, the “new minority.”
Chastised, abandoned, silenced and marginalized.
Competent pain management physicians are leaving their practice in fear of losing their license and having their assets seized for prescribing opioids. This intended or unintended outcome is leaving a wake of “pain refugees” without sufficient access to medical care or pain relief.
These events are unfolding as waves of unwarranted hardship impacting stable patients, and their healthcare providers. There is no justification for this kind of unethical and inhumane treatment. The only perceived “crime” that these patients have committed is the misfortune of having a diagnosis that requires opioids to manage their pain. The only crime most physicians have committed is wanting to treat their patients with autonomy to relieve their pain.
The pain community is being gas-lighted and scape-goated. Our community is being blamed for the rise of unintentional overdoses that are fueled by illicit Fentanyl pouring in from other countries. We are suffering consequences for an “opioid crisis” or “drug war” that many legitimate patients and their healthcare providers have had absolutely no control over, and have never contributed to.
As a result of opioid hysteria, a term coined largely by intractable pain patients in response to being scapegoated, patients are being blamed for the influx of illicit opiates like Fentanyl from other countries including Mexico, Afghanistan and China. This stance against patients is preferable to the Drug Enforcement Agency and other over-sight agencies than admitting that the “war on drugs” is an “epic fail!”
So, the pain community continues to be thrown under the opioid bus rather than re-group or change policy.
The facts supporting our position are beginning to pour in and mainstream media is slowly bringing transparency to the this issue. However, untold damage has already been incurred by the pain community that can’t be reversed. There a lot of special interests invested in perpetuating the “opioid hysteria” as it serves their bottom lines very nicely.
We can only go forward by rescinding the CDC guidelines as a failed policy, and in light of new information, it will be the pain community’s responsibility to inform the public of the truth.
As a community, our mission is to make sure this undue harassment never happens to legitimate pain patients again.
So, how will we overcome obstacles to eAdvocate for our community?
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 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.
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 medical intervention.
Dr. Stephen Grinstead offers insight into the obstacles pain patients face in addition to their 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 complications.
By that point, the patient has often lost their job, lost access to insurance coverage and access to medical care. Third-party administrators benefit from minimizing patient’s complaints of pain by pocketing billions in profits. They also profit by micro- managing healthcare providers through intimidation into utilizing “conservative treatment” or “protocols” that withhold more assertive or “costly interventions” until the patient has complications, or rolls over to disability, federal/ state aid. This is unacceptable.
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 you witnessed how third- party-administrators and politicians literally shut down the government over that.
Legitimate intractable pain patients are convienently 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 and chronic 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 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 break 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 about to change.
The Pain Advocacy Coalition #shareourpain intitiative is dedicated to advocating for changes in healthcare policy by empowering the pain community to advocate for themselves in the era of collaborative tools and social media.
Collaborative Tools and the 21st Century
Collaborative tools are created explicitly to empower people to collectively define, address and solve their own problems. Thankfully, we live in an age where we can access these tools, overcoming physical and geographical boundaries, to define and successfully crowd-source a solution to a common problem. We will co-operate to amplify our community’s message through e-Advocacy by utilizing collaborative tools.
Grass- Roots Movement
We are actively engaged in collaborating with individuals and advocacy groups in a grass-roots movement to solicit changes to the CDC guidelines and increase the public’s current knowledge base regarding the diagnosis of acute/ intractable pain and the available treatment options, or lack there-of.
We are advocating for a more humane medical approach for those who live with intractable and acute pain.
We are a self-funded group unaffiliated with any other organizations or special interests. This project is proposed by pain patients, for pain patients, to empower our community to collaborate effectively. We will work collectively to refute misinformation, raise public and media awareness, and empower ourselves to have a voice in our own healthcare choices.
We hope you will join us!
Even patients who are at a disadvantage in advocating for themselves for obvious reasons can still participate with the help of a caregiver. This vulnerability is an issue that is often exploited, but it is an issue we intend to correct through encouraging the pain community to use collaborative tools and social media platforms.
Our motto is…. “it’s not a conversation about us, without us!”
We believe the healthcare process is inclusive- not exclusive!
The pain community has no other choice but to step out of the stigma shadow, collaborate, refute misinformation, change the narrative, confront policy makers, mainstream media and special interests who are resolved to implement opioid prohibition despite the pain community’s outcry of “foul play!”
It is our mission to equip our community to step up to address the federal and state level discussion about opioids with their legislators, physicians, pharmacists, local communities, third-party administrators, oversight agencies, healthcare providers, and enforcement agencies through the use of technology.
It should be stated that the content and opinions expressed on this website are based solely on each member’s individual research, experience and opinion. All opinions published on this website are the individual author’s personal perspective of the issues that are facing the pain community.
We are encouraging patients to research the issues for themselves, draw their own conclusions, and take appropriate action to make their concerns known in their communities by using the very same collaborative tools to refute policy makers who utilize collaborative tools to implement failed policy.
Our commentary should not replace, or be represented as disseminating medical advice to anyone. We are not physicians. If you are seeking medical care or having a medical emergency, we are encouraging you to contact your healthcare provider for individualized medical care or dial 911.
With that said, we fully recognize the options for patients in pain to gain access to adequate pain relief or access to appropriate mental health services tailored for pain patients are dwindling to few options or none.
Our future includes looking forward to collaborating with all of you in upcoming online events. We hope you will explore the Call to Action page on this website for more information on how to use collaborative tools to build a solid social media foundation. Also, check out our #shareourpain Portfolio for some examples of how we have used e-advocacy to amplify our message. We hope that we have inspired our community to take e-Advocacy to the next level.
We would love to feature your success using collaborative tools and eAdvocacy on our Testimonials page. Give us a “shout out” and let’s dialogue about featuring your advocacy journey!
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