National Pain Advocacy Center
STRATEGIC PLAN | 2020-2023
Our Inspiration. In the midst of the overdose crisis, we noticed an alarming trend: well-intended efforts aimed at stemming opioid prescribing were resulting in pain patients being denied medication and refused healthcare altogether. Patients experienced damage to their physical and emotional health, the loss of work and function, and even suicide. In response, we came together as an alliance of clinicians, civil rights advocates, and individuals with lived experience of pain.
Vision. At the National Pain Advocacy Center (NPAC), we envision a world in which pain is treated equitably and effectively, so that all people in pain can lead full and productive lives.
Mission. We are on a mission to advance the health and human rights of people in pain.
What Makes us Unique? We are a systems advocacy organization working to create structural and policy change. Through advocacy and education, we seek to transform how pain is understood and treated. We were founded by people with lived experience of serious pain and their family members, and bring professionals with a diverse array of expertise together under one umbrella.
Our Values.
“Of all the forms of inequality, injustice in health is the most shocking and inhuman.”
Rev. Martin Luther King, Jr.
Social Justice: We frame pain management through a social justice lens.
Equity: Pain can affect anyone, but some groups are more vulnerable or face greater barriers than others. Pain is a women’s rights issue, a racial equity issue, a disability rights issue, an older persons’ issue, and a human issue.
Diversity and Inclusivity: We embrace diversity and seek to serve all people affected by pain, including caretakers and families.
Dignity: We believe that all people in pain should be accorded dignity and respect.
Community: We seek to be a place where people in pain are seen and heard. We want them to feel like they and their experiences are at the center of the advocacy we do.
Collaboration: We value collaboration with like-minded organizations.
Science, not Stigma: We believe that stigma arises partly from poor understanding of pain.
Integrity: Integrity and ethics are core to our mission. We pledge to take no pharmaceutical industry or other funding that may create actual or perceived conflicts.
Experience: We believe that our advocacy is enriched by integrating lived experience with pain and broad professional expertise.
Special Focus. Our animating principles are framing pain management as a civil rights and health equity issue, and emphasizing the importance of treating both pain and addiction in addressing the overdose crisis.
Social Justice and Equity.
Pain can affect anyone at any time. It has cascading effects on partnerships, families, the work force, and the economy. Nevertheless, it has been treated as a second-class condition: our investment in pain research and treatment is out of step with pain’s widespread prevalence and disabling life consequences. People in pain are frequently stigmatized, dismissed, and disregarded. And some groups experience greater barriers and disparities in care than others. For example:
Pain is a woman’s rights issue.
Chronic pain disproportionately affects women. Some studies show that up to 70% of people in chronic pain are women. This is both a sex and gender issue. Research suggests that there are biological differences in pain processing, and that different cells contribute to chronic pain in males and females. In addition, societal bias creates an environment in which women and individuals who are trans often have their pain dismissed or disbelieved.
Pain is a racial equity issue.
People of color often have their pain rated lower by clinicians, due to implicit biases or underlying beliefs suggesting that black or brown people can tolerate more pain. People of color are also more often perceived as drug-seeking and denied appropriate care as a result.
Pain is a disability issue.
Pain is the chief cause of long-term disability worldwide. Many people with disabilities have co-morbid conditions causing pain.
Pain is an elder and children’s rights issue.
Older Americans have more conditions causing pain. The pain of children is often disregarded. Both groups may have special considerations when it comes to using medication to manage their pain.
And… Pain is a human issue.
A person’s pain affects the most basic of life interests: the ability to function, to work, and to partake in family and social life.
Pain Treatment Amidst a Drug Overdose Crisis.
Although our primary focus is on pain, we strongly believe that those with pain, addiction, or both, deserve effective and compassionate care. To us, pain and addiction are central, intersecting public health crises of our time and both are undertreated, subject to considerable stigma, and widely misunderstood.
We believe the overdose crisis and the pain crisis are intimately connected: our society’s failure to invest in research about pain and its appropriate treatment and our failure to make evidence-based treatments more widely available led to the simple, one-sized solution of prescribing medications that in some cases proved inappropriate. More consequentially, this medication too frequently fell into the hands of those to whom they were not prescribed. While addiction is complex, and most drug overdoses involve multiple substances, legal and illegal, used in combination, our collective failure to address both serious pain and addiction have come to a head in the overdose crisis.
Yet there is a significant void in advocacy about the appropriate management of pain during the overdose crisis. Instead, the treatment of pain (rather than our failure to effectively treat it) has been blamed for spawning the crisis. As a result, many policies aimed at containing the overdose crisis are harming people in pain. People in chronic pain, and people with illnesses and disabilities in which serious pain is a primary feature, have largely been left out of policy conversations about this crisis—or worse, stigmatized for their reliance on certain medications. These conversations deeply affect their lives, the quality of their lives, and their ability to function. Thus, the perspectives of people in serious pain should be part of any policy conversation about pain treatment and any policies that focus on reducing the available medical supply of pain medication must be balanced with the concerns of those for whom such substances are medically necessary.
No current group is filling this advocacy void. The most visible patient-focused pain group, US Pain, is facing ethics issues. A primary professional and research association, the American Pain Society, has folded under economic pressure. Pain groups historically have been heavily funded by the pharmaceutical industry, which in the current context of the overdose crisis has delegitimized them in the eyes of many in the broader public. Groups doing advocacy for the most impacted populations such as disability rights and racial justice organizations are already overwhelmed with other issues and do not have the capacity to address the nuanced issues involved with advocacy for pain patients. We collaborate with these organizations and our presence increases their capacity.
The advocacy that exists around the overdose crisis tends to look at this crisis in binary terms, advancing the interests of either those in pain or those with addiction. This approach has fostered division and an “us or them” mentality. We are committed to building bridges and advancing the treatment of both people in pain and people with addiction.
Our Methods.
We will achieve our goals by:
Providing a forum for those affected by pain, featuring stories, studies, policy news, and other content.
Serving as an informational resource for policymakers and the media. We will connect journalists and the wider public to a network of experts with a variety of perspectives.
Advocating in the policy environment to:
fight barriers to appropriate pain treatment, including arbitrary limitations on access to medications,
promote clinician education about pain treatment,
promote research funding on par with pain’s prevalence and disabling consequences,
promote access to and coverage for a range of evidence-based treatment options,
promote the rights of people in pain to medical care grounded in dignity, science, compassion, and innovation.
Educating the public about:
the difference between acute and chronic pain, and the understanding that chronic pain can become a disease in its own right and require treatment as such,
the difference between physiological dependence on a medication and addiction, and the understanding that many people appropriately require and rely on medication,
the prevalence of serious pain,
the life-altering and disabling consequences of poorly treated pain,
the social and economic costs of our failure to invest in pain,
the barriers and disparities pain research and treatment.
Strategic Direction & Priorities.
Advocacy & Civic Engagement.
We are a systems advocacy organization. Our advocacy will include everything from responding to agency calls for comment, to meeting with and educating policymakers at every level of the political and healthcare systems, to actively fighting policies and practices that undermine the health and well-being of people in pain.
We will also develop advocacy tool kits and provide training for individuals and families to advocate on their own behalf within the health care system and with policymakers. We will continue to speak to medical providers and educators, appear in the press, and publish Op-ed, medical, and legal pieces.
Education.
Pain is poorly understood by policymakers, the media, and the general public, and this lack of understanding results in stigma and policies that undermine the health and well-being of people in pain. Developing educational materials and videos and a social media campaign on pain is thus a central priority and a critical adjunct to our advocacy.
We will raise awareness about serious pain as a widespread medical problem, showing, for example, that pain figures heavily in lists of the top 10 diseases, the top 10 reasons people seek medical attention, and the top 10 causes of disability. We will also highlight the prevalence of serious pain: one in every six Americans, or 50 million, has pain every day or nearly every day of their lives, 40 million report severe pain, and nearly 20 million have pain so intense that they cannot engage in the most basic of life activities.
Community Building.
Although we are primarily an advocacy organization, we were founded by people in serious pain and their loved ones, and it is important for us to have the stories and experiences of people in pain and their loved ones reflected in our organization at every level. Community-building is thus important to our mission. We will profile people and their experiences on our website, provide the community with current studies and relevant resources, and engage with community members directly through twitter chats, video conferences, and possibly a podcast.
Partnerships/Coalition Building.
We will build inter-professional partnerships and partnerships with organizations whose goals align with our mission and our values. These may include disability and chronic illness groups, racial equity groups, women’s rights and women’s health rights groups, groups advocating for older Americans and children, groups organized around specific diseases, drug policy groups, medical and professional associations, among others.
Key Advocacy Areas.
Fighting Barriers to Medication Access & Forced/Abrupt Tapering. Efforts to reduce opioid prescribing have created barriers for people in pain when it comes to accessing their medication. This problem accelerated after the CDC issued its initial Guideline for Prescribing Opioids for Chronic Pain in 2016. States, medical boards, law enforcement agencies, pharmacy benefit plans, pharmacy chains, and healthcare systems, who lacked clear understanding of the Guideline, improperly applied it. Patients with cancer, sickle cell, and other serious conditions now have difficulty accessing necessary medications as a result.
People with chronic pain are also being involuntarily tapered off of medications on which they have relied for years. This dangerous practice has greatly exacerbated the suffering of those already in serious pain, who report a dramatic decrease in their ability to function, job losses, and the inability to care for themselves or their family members. Some patients have even committed suicide. Several studies in the last year have confirmed that dose reductions are happening abruptly and with devastating effects. Although careful, voluntary dose reduction may help certain patients, abrupt and forced tapering do not.
We will fight all such policies that endanger the health and safety of people in pain.
Working to Redress Patient Abandonment.
Two studies in the last year document increasing pain patient abandonment. In one, 40% of primary doctors said that they would not treat a patient who requires opioids to manage pain; in another, 81% said that they are reluctant to treat this population. The Department of Justice recently settled a case against a medical practice that refused to see a patient who used opioids, finding a violation of the patient’s civil rights under the Americans with Disabilities Act. We will raise awareness about this problem and bring the complaints of those experiencing such refusals to the appropriate government agencies. We will also provide technical assistance to physician groups on appropriate practice guidelines.
Addressing Health Disparities in Pain Treatment.
COVID19 has shined a bright light upon the life-and-death consequences of health disparities in this country. These same disparities exist in pain care as well. We are committed to raising awareness about the burdens certain populations face in pain treatment.
Educating the Public.
Pain remains poorly understood by the general public and stigmatized as a result. Too often people in serious pain are characterized as malingering, lazy, or drug-seeking. Most members of the public have only experienced acute pain, which is a normal and protective body function. But even when acute pain becomes severe, as after surgery, we don’t heal well unless it is managed. And when pain becomes chronic, it starts to lose that biologically protective function and does damage to the body – affecting nearly every bodily system. It functions more like a disease. For the public to care about pain and its management – it needs to be educated about these basic ideas. Through op-eds, social media campaigns, video shorts and advocacy with public health authorities, we will attempt to educate the public more broadly about the importance of treating pain.
Promoting Pain Education Among Clinicians.
One of the reasons primary care doctors are reluctant to treat pain patients who use opioids is that they receive little medical education in how to treat pain. One study from Johns Hopkins found that only four US medical schools had a single required course on pain treatment; others have shown that veterinarians receive significantly more hours than primary care clinicians do.
We will continue to speak at conferences educating physician groups and medical schools, and will promote clinician education.
Promoting Multimodal Pain Care and Coverage.
The gold standard of pain care is individualized. It is patient-centered. And it often involves a combination of treatment modalities including interventional techniques (such as surgery or nerve blocks), medication, psychological techniques (such as cognitive behavioral therapy), and complementary or integrative modalities (such as acupuncture or chiropractic). But too few people in pain have access to this sort of care and payers reimburse complementary and integrative care poorly. We argue for expanded access to and coverage for the range of evidence-based treatments for pain.
Promoting Investment in Pain Research.
Research on pain has improved with Congress’ allocation of HEAL money, but it remains inadequate and out of synch with pain’s prevalence. There is a still so much we do not know about pain, including what makes pain become chronic. Early studies involving animals suggest that completely different cellular processes may be involved in chronic pain in males (glial cells) and females (T cells). We work to promote additional research and to ensure that people in pain are consulted with on studies and involved in them.
Promoting Implementation of the National Pain Strategy and the Interagency Task Force Report.
Many of our goals are addressed in the National Pain Strategy, which outlines a plan for addressing chronic pain, and the recent Pain Management Best Practices Interagency Task Force Report. We will work to promote implementation of these government efforts.
Special Advocacy Considerations: Pain and COVID19.
People in pain may be more vulnerable to COVID19 due to immunity issues. Many of the diseases that cause pain, like cancer and autoimmune diseases, result in patients being immune compromised, as do medications like steroids or chemotherapy. Blanket cuts in the opioid supply have also created shortages for ventilator patients in the ICU, which the DEA is working to address, but these shortages were a predictable result of drug policy.
Organizational Priorities.
We’ve just launched our organization and officially received our 501c3 status from the IRS. Our primary focus for the next six months is getting the organization up and running. Having refined the mission and vision, we are actively seeking out Advisory Board members, diversifying the Board, and developing our logo, website, and educational materials. In 2021, we would like to convene a meeting of our diverse subject matter experts who include scientists, public health experts, physicians, civil and human rights lawyers, and policy experts, to put together a series of working papers for use in civic engagement.
Methods of Evaluation.
We will evaluate our success on several metrics: success in creating greater diversity and inclusion; success in community-building; success in messaging; success in collaborating with others to create sustainable partnerships; and, ultimately, success in effecting change.