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, AdvocacyLab and TedXTalks on YouTube 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.
“A Theory of Social Change”
Video credit: Ford Foundation
Video credit: AdvocacyLab
“Five Steps to Becoming an Advocate”
Video credit: Joseph R. Campbell/ TedXTalk
A Platform for Change
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/ chronic/ 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/ chronic/ 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 unwarranted 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
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/ chronic/ 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 by cartels from China, Mexico and Afghanistan
- clarifying to the public the influx of “illicit” Fentanyl is not related to over prescribing opioids or pharmaceutical grade 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, or based on skewed data, will dramatically impact the acute pain population’s access to adequate opioid analgesia in 2016 and beyond
- disseminating information about the deadly nature and medical complications associated with chronic and intractable pain
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
- ensuring all future research impacting pain patients include metrics that focus on maintaining “functional ability and quality of life” as successful treatment goals vs. reducing number of prescriptions
- 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 ultimately, 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 oversight 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 incorporate continued education addressing “healthcare bias” when treating patients with acute, chronic or intractable pain
- demanding appropriate diagnosis, treatment, and pain management is delivered to patients 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
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, regarding prescribing opioids for treatment of acute, chronic and intractable pain
- correcting the mainstream media’s narrow narrative regarding the impact of the CDC guidelines on the pain community and healthcare providers, including flawed research/ data/ statistics
- correcting mainstream media’s narrative regarding the source of illicit Fentanyl role contributing to unintended overdoses, public health policy over-reach by oversight agencies, and the erosion of the patient- physician-pharmacist relationship
- encouraging media to widen the scope of reporting by bringing greater transparency to policy makers and special interest 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 billing third-party administrators for rehabilitative services (that are not tailored for pain patients, but more appropriate for individuals who are coping with addiction, or a mental health crisis).
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, impacting access opioids for patients with the diagnosis of acute, chronic pain or intractable pain
- establishing protections for patients from healthcare gender or racial bias, profiling, discrimination, opioid bias and all other forms of marginalization
- developing quality assurance measures that ensure a patient’s complaint is documented, validated and intervened upon in a reasonable time frame to prevent misdiagnosis, 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 to the pain community to raise public awareness about misconceptions surrounding the alleged “opioid epidemic”
- challenging institutions that support known figureheads of healthcare initiatives, based on flawed data and misinformation, that further restrict opioid treatments as prescribed and potentially harm patients
We are dedicated to ensuring all acute, chronic and intractable 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, or primary physician, in tandem with patient education
As a result of implementation of the 2016 CDC Opioid Prescribing Guidelines, a restrictive policy initially directed at primary care physicians only, became an unintended “mandate” was put into action without public approval by 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, double speak and group think.
This has resulted in a wreckless erosion in the patient-physician-pharmacist relationship, opioid phobia, stigma, marginalization and decreased access to medical care, for millions of patients suffering in pain, including both reduced access to pain management and primary medical care.
These public health measures are resulting in complications related to under-treatment of pain, failure to diagnose in a reasonable time frame, and accelerated mortality, including suicide and overdoses.
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 public health policy over reach.
This election year in 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 general public to take action, and support treating all pain equally and 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 all patients will not suffer the ramifications of untreated, or undertreated pain unnecessarily.