PAC Platform

The Pain Advocacy Coalition initiative is a grass-roots, patient-centric movement empowering patients and caregivers to successfully advocate through the use of collaborative tools, social media platforms and social media strategy. We are advocating to bring about social and healthcare policy reform impacting patients diagnosed with acute, chronic or intractable pain.

Social Change and eAdvocacy

Through collaborative tools and crowd sourcing a common problem, the pain community will impact social change to reform healthcare policy through eAdvocacy for millions of patients contending with acute, chronic and intractable pain.

A Theory of Social Change

Check out the videos below by the Ford Foundation and eAdvcacyLab discussing how the pain community can create political opportunity, organizational infrastructure, while engaging people to unite, change healthcare policy and social reform through eAdvocacy.

Through education, mobilization, policy reform, and advancing public awareness the pain community is collectively putting forth the following platform for change.

Opioid Policy

By utilizing research, collaborative tools and social media strategy the Pain Advocacy Coalition (PAC) will advocate for changing over- reaching draconian healthcare policy by:

  • encouraging dialogue with policy makers, special interests, and oversight agencies to recognize the negative impact of the CDC guidelines on patients experiencing acute/ intractable pain
  • urging policy makers, special interests, and oversight agencies to stop new legislation that restricts prescribing opioids to patients until viable research, treatments and medical modalities for pain have demonstrated reliability through sufficient trials establishing their efficacy in comparison with opioids
  • refuting third-party administrators efforts to further deny coverage to restrict treatment of acute/ intractable pain with opioids
  • empowering patients and caregivers to contribute to state/federal policy discussions impacting medical care for acute and intractable pain patients
  • derailing state/ federal legislation and policy guidelines that restrict physician’s autonomy to provide individualized care to patients in acute/ chronic pain
  • ensuring that information and data obtained from the Prescription Drug Monitoring Program (PDMP) is utilized appropriately including discouraging profiling of patients or physicians, accurate and efficient follow up on complaints if there are errors identified, and preventing mis-use of data to profit

Public Awareness

By utilizing research, collaborative tools and social media strategy the Pain Advocacy Coalition (PAC) will address raising public awareness about the “opioid crisis” by:

  • informing the public about treatment of acute/ intractable pain patients utilizing opioids for effective analgesia
  • correcting misconceptions about the opioid crisis, including clarifying to the public that the culprit contributing to unintended overdoses is illicit Fentanyl (synthetic analogues) distributed illegally from China, Mexico and Afghanistan
  • clarifying to the public the influx of “illicit” Fentanyl is not related to over prescribing opioids or Fentanyl by licensed pain management physicians to legitimate patients
  • educating the public that new state legislation, third-party administrators, and special interests are rolling out guidelines that are not well researched, will dramatically impact the acute pain population’s access to adequate opioid analgesia in 2018
  • disseminating information about the deadly nature and medical complications associated with intractable pain

Research

By utilizing research, collaborative tools and social media strategy the Pain Advocacy Coalition (PAC) will address raising awareness about current research about opioids by:

  • disputing the use of flawed research and/ or statistics to implement a opioid prohibition resulting in harm to patients and the medical community
  • disputing flawed research and/ or statistics to justify extreme government over reach that significantly interferes with the patient/ physician/ pharmacist relationship
  • advocating future research is free of special interest profit motives and government interference
  • advocating for research for viable treatments that equal opioid analgesia’s effectiveness

Individualized Patient Care

By utilizing research, collaborative tools and social media strategy the Pain Advocacy Coalition (PAC) will address protecting individualized patient care by:

  • protecting all patient’s educated healthcare choices made mutually with their physician to implement opioids as part of their treatment plan
  • advocating for individualized medical care, not a “one size fits all approach”  to manage pain in the event other medical modalities are deemed unsuccessful
  • restoring autonomy and latitude to physicians to make healthcare decisions about prescribing opioids with their patients without the burden of fear, threat or harm to their ability to practice medicine or maintaining their assets
  • restoring the eroded patient-physician-pharmacist relationship from one of suspicion to a relationship of mutual trust
  • ceasing inappropriate mass diagnosis of chronic pain patients with Opiate Use Disorder (OUD) merely because opioids are a part of a patient’s short or long-term treatment plan
  • providing intractable pain patients with individualized psychosocial support tailored specifically for the needs of the pain community, which differ significantly from the needs of the mental health community and / or the needs of an individual coping with addiction
  • supporting pain management physicians to restore their clinical autonomy from physician groups who implement protocols that are more stringent than mainstream guidelines to ensure third-party administrators will reimburse them, leaving patients receiving different care from different facilities and destroying continuity of care
  • challenging government oversight agencies from interfering with pharmacies delivering medications lawfully
  • preventing pharmacists from practicing medicine and/ or profiling physicians/ patients on behalf of over sight agencies by using the Prescription Drug Monitoring Program (PDMP)
  • challenging the prevalence and practice of under-diagnosis of pain, under-medicating symptoms of pain, or over-medicating with patented drugs that are often ineffective or have side effects, over utilization of injections, as a viable alternative to offering treatment with opiates, when all other treatment modalities have failed
  • requiring healthcare providers  to have continued education addressing “healthcare bias” when treating patients with acute or intractable pain
  • demanding pain management is delivered within a reasonable time frame prior to patient’s declining, losing their livelihood, experiencing bankruptcy, ultimately being marginalized, and thrust unwillingly into disability or in some cases, accelerated mortality

Media

By utilizing research, collaborative tools and social media strategy the Pain Advocacy Coalition (PAC) will address raising mainstream media’s awareness by:

  • challenging the narrow narrative mainstream media is perpetuating about  prescribing opioids for treatment of acute and intractable pain
  • correcting the mainstream media’s narrow narrative about the impact of the CDC guidelines on the pain community and healthcare providers, including flawed research/ statistics, the source of illicit Fentanyl contributing to unintended overdoses, the over reach by oversight agencies, and the erosion of the patient- physician-pharmacist relationship
  • encouraging media to widen the scope of reporting by bringing transparency to policy makers and special interest’s profit motive by implementing a prohibition of opioids in favor of up “selling” patented drugs (which are expensive with multiple side effects and often ineffective), injections (that are invasive, expensive, short term- treatments), and bill third-party administrators for rehabilitation (not tailored for pain patients but more appropriate for individuals who are coping with addiction or mental health crisis).

Patient Empowerment

By utilizing research, collaborative tools and social media strategy the Pain Advocacy Coalition (PAC) will foster patient empowerment by:

  • encouraging patients to have a voice and a stake in their treatment including protecting individualized plans of care for pain
  • encouraging patients to participate or derail state/ federal legislation about opioids for patients with the diagnosis of acute/ chronic pain
  • establishing protections for patients from healthcare gender or racial bias, profiling, discrimination, opioid bias and all other forms of marginalization
  • develop quality assurance measures that ensure a patient’s complaint is documented, validated and intervened upon in a reasonable time frame to prevent mis-diagnosis, under-diagnosis, complications and harm
  • offering the pain community collaborative tools, to crowdsource common problems, social media strategy and eAdvocacy to amplify their message
  • providing information packets of factual literature to the pain community to assist them to raise public awareness about misconceptions surrounding the “opioid epidemic”
  • challenging institutions that support known figureheads of healthcare initiatives based on flawed data and misinformation that restrict opioid treatments and potentially harm patients

We are dedicated to ensuring all acute and chronic pain patients are treated humanely with dignity, including protecting a patient’s decision to implement the use of opioids if deemed appropriate by a licensed pain management physician in tandem with patient education.

Ongoing Protections

As a result of implementation of the CDC guidelines, a restrictive policy that was initially directed at primary care physicians only, an unintended “mandate” was put into action without public approval for legislators, third-party administrator and special interests to dictate medical care to physicians and patients. As a result, opioid hysteria has ensued, driven by skewed data, and group think.

This has resulted in a wreckless erosion in the patient-physician-pharmacist relationship, opioid phobia, stigma, and decreased access to medical care, for millions of patients suffering in pain, including both reduced access to pain management physicians and primary medical care. These measures are resulting in complications related to under-treatment of pain, or failure to diagnose in a reasonable time frame.

It’s clear that patients living with pain will need to demand future ongoing guarantees to protect their rights to direct their own individualized medical care in partnership with a licensed pain management physician/ primary care physician without fear of undue burden, stigma, hardship or government/ special interest interference or over reach.

This election year 2020, we hope our actions will elicit a national conversation and collaborative groups will form in each of our states, inspiring not only the pain community, but the public to take action and support treating all pain ethically, by delivering effective pain management, including access to opioids as a treatment option, in a reasonable time-frame with equanimity, humanely with compassion going forward, so that patients will not suffer the ramifications of untreated or under-treated pain unnecessarily.



Pain Advocacy Coalition Initiative

Pain Advocacy Coalition Initiative

The Pain Advocacy Coalition initiative 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 healthcare policy and the negative consequences of 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.

Join Us

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 will also stand in solidarity with pain management physicians who have served our community in good faith.

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 healthcare 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. Each author contributing to the web site by offering commentary or individual interviews, are merely expressing their individual perspective and opinions in alignment with freedom of expression and the First Amendment.

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.

eAdvocacy Future

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.

Leave us a comment and tell us how you are using collaborative tools to successfully eAdvocate for the pain community!

Prevalence of Pain

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 loss of career, home, treasured relationships and other significant losses before the use of opioids are implemented, after all other treatment modalities are exhausted.The prevalence of pain underlines why preserving individualized patient care is so crucial.

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 sub-populations 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.

https://nccih.nih.gov/research/statistics/NHIS/2012/key-findings

https://nccih.nih.gov/news/press/08112015

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 of patients from successfully participating in their daily lives at their fullest capacity preserving their quality of life.

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.

High Impact Chronic Pain

From a study published by ncbi.nlm,nih.gov by Pitcher, Von Korff, Bushnell and Porter “Prevalence and Profile of High-impact Chronic Pain in the United States ” published August 2018 states:

“Overall, chronic pain, defined as pain experienced on most days or every day in the previous 3 months, was strongly associated with an increased risk of disability after controlling for other chronic health conditions (odds ratio = 4.43; 95% confidence interval = 3.73-5.26), where disability was more likely in those with chronic pain than in those with stroke or kidney failure, among others. HICP affected 4.8% of the U.S. adult population, or approximately 10.6 million individuals, in 2011. The HICP population reported more severe pain and more mental health and cognitive impairments than persons with chronic pain without disability, and was also more likely to report worsening health, more difficulty with self-care, and greater health care use.” 

Chronic pain continues to impact millions of patients, high impact or not.

Center for Disease Control (CDC) Guidelines

Due to healthcare policy changes, many patients experiencing pain 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. Medical care is not consistent across states as legislators rush to implement even more restrictive guidelines than originally suggested by the CDC.

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.

Events are unfolding as waves of unwarranted hardship impacting stable patients, and their healthcare providers come to light.There is no justification for unethical and inhumane treatment of patients in acute, chronic or intractable pain. 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 for a failed drug war. 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!” 

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 are a lot of special interests invested heavily in perpetuating “opioid hysteria” as it serves their bottom lines very nicely.

So, the pain community continues to be thrown under the “opioid bus” rather than re-group or change policy.

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.

We intend to raise public awareness about the facts by raising our voices!

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?

Check out future PAC posts discussing overcoming obstacles to amplify our message!

Thanks for leaving us your thoughts about the prevalence of pain in the US, how changes in healthcare policy have impacted your life and how you are bringing transparency to the issues that face the pain community.

Legislation

Resist​ ​today,​ ​resist​ ​tomorrow,​ ​resist​ ​daily!”

​Third-party-administrators, special interests, federal and state legislators and oversight agencies are rushing to try to enact draconian policies across the United States to restrict patient access to opioids as a viable treatment option for primary and pain management physicians for acute, chronic and intractable pain without sufficient evidence.

In addition, there is a rush to “sue big pharma for billions not millions,”although it is becoming increasingly clear that many overdose deaths have been attributed to illegal synthetic Fentanyl analogs flooding over the United States border.

Yet, opioid zealots continue to push an anti-opioid agenda, even if overdose deaths are being heavily attributed to illicit, illegal fentanyl, regardless of the negative impact to patients.

Synthetic analogs currently remain available for purchase from international labs online in China, and illicit, illegal fentanyl analogs are flooding over the border from Mexico and Canada.

 Studies are beginning to reflect that polypharmacy, not prescribed opioids for patients with corresponding diagnosis, are the culprit for the current onslaught overdose deaths.This leaves the anti-opioid zealots with a lesser rationale for their platforms, that’s frequently based solely on a profit driven agenda- not patient-centric philosophy.

Regardless of the emerging facts, tighter healthcare policy for prescribed opioid restrictions are being fueled by third-party-administrators (insurance companies), oversight agencies and special interests essentially without sufficient research, justification or they are utilizing conflated and flawed data.

Fear mongering and propaganda complete with over dramatic videos are also being utilized by some anti-opioid advocacy groups to manufacture public consent in many cases.

The current research is thought be flawed, or questionable. There have been major assumptions or misrepresentations made about a subject that is deeply complex and affecting millions of patients.

In some cases, in true Center for Disease tradition -the books are essentially cooked.

STATES CONFRONT OPIOID OVERDOSE EPIDEMIC

See how laws are being set across the country to limit access to opiods per National Conference of State Legislatures who report:

“Legislation limiting opioid prescriptions debuted early in 2016, with Massachusetts passing the first law in the nation. Among other provisions in the comprehensive act, the state set a seven-day supply limit for initial (first-time) opioid prescriptions. Prior to Massachusetts’ law, some states had passed bills related to prescribing, such as Washington’s legislation directing five professional boards and commissions to adopt rules related to chronic, non-cancer pain management, but none had set such a short time limit in statute.

By the end of 2016, seven states had passed legislation limiting opioid prescriptions, and the trend continued in 2017. More than 30 states considered at least 130 bills related to opioid prescribing in 2016 and 2017. According to NCSL’s tracking, 28 states had enacted legislation with some type of limit, guidance or requirement related to opioid prescribing by early April 2018.”

This means that the pain community will need to step up their efforts in the 2020 election year to demand change from the driving forces behind our politicians and oversight agencies.

Namely, special interests.

In 2019, Medicare and Medicaid are attempting additional restrictive opioid policy.

It will be up to the pain community to stand up and make their voices heard with federal and state level legislators.

Luckily, we have some online tools to help us be informed about each of our individual states, and we also have collaborative tools that we can utilize to make sure we are heard!

Our Cause

Our cause will likely be fought state by state, and federal legislators are saying there needs to be an overwhelming response from our community, both federally and on a state level, to effectively change the course we are currently on.

We all need to prepare accordingly as advocates and voters. Here are some additional resources to review and prepare.

Please consider using these tools to create a template to reach out to your state and federal legislators to restore individualized, appropriate, effective medical care to pain patients.

For more information and useful tools please check out our online Resource page!

We hope to see all of you online to raise public awareness about this complex issue and dialogue for change with policy makers, third-party-administrators and special interests.