key: cord-0974511-t2xblvnv authors: Delk, Wade; Quinlan-Colwell, Ann title: The Journey of the American Society for Pain Management Nursing Into Advocacy and Governmental Affairs date: 2020-08-20 journal: Pain Manag Nurs DOI: 10.1016/j.pmn.2020.06.004 sha: 6bb8667efe978f3beec807e496e564097e529014 doc_id: 974511 cord_uid: t2xblvnv nan In the spring of 2008, as issues with the American Society for Pain Management Nursing (ASPMN) organization and members were rising at the federal level in the realm of governmental affairs, the ASPMN leaders decided to pay closer attention to what was occurring with those issues. The decision was made to start with a small first step to monitor legislation and share with ASPMN's members anything that might be of interest or of which they needed to be aware. The initial step forward was to identify what issues were being discussed and by whom. Some of our member companies shared groups they had been involved in and information that was being circulated. We spent some time getting up to speed on areas of interest and started attending meetings being held by three coalitions that we soon joined. The first one was specific to pain management, and the other two were organized around other nursing issues. Opportunities arose immediately for ASPMN to be involved in actions those coalitions were taking. One of the first actions was a request from a nursing coalition for us to contact Members of Congress to ask them to appropriate $200 million in funding for the Nursing Workforce Development Programs (U.S. Code, 2010; Veltri, 2020) and restore the Advanced Education Nursing Program. A different nursing coalition requested that ASPMN sign a letter supporting a soon-to-be-introduced bill for the Nurses Higher Education and Loan Repayment Act of 2008 (House Energy and Commerce Committee, 2008) . That legislation sought to address the faculty shortage by providing a loan repayment program for students enrolled in graduate nursing programs and for nurses who recently graduated with advanced degrees. Many more opportunities to act soon followed for ASPMN. Although some of our early activities were not specific to pain management, they could impact nursing. We worked to learn more about issues that could affect ASPMN, but knew that we also needed to gain the trust and respect of other organizations. It was critical to our future success to support the efforts other nursing organizations and coalitions had been involved in rather than just come in and set our own agenda. Proving the value of ASPMN as an ally to other organizations engaging in issues of interest to us was important as we dipped our toes into the political arena. We needed to learn the players, the origins of issues, and the history of actions taken. In time, there were numerous requests for ASPMN to support initiatives of other organizations, and although we needed to demonstrate our value, we also needed to avoid stretching ourselves too thin or being seen as a group that signs on to anything and everything. To do that would weaken our voice. When presented with initiatives to support, we assessed how closely the proposal aligned with our mission. If it seemed the initiative was about the mission of another group, but not consistent with the mission of ASPMN, we did not actively support it. In the beginning, perhaps the most important thing that we did was choosing the issues with which we engaged. They must always support the mission of ASPMN or nursing in general. Our decision to support and engage in any initiative was made purely because we believed it was the right thing to do based on our knowledge and expertise, and that it was important for our members and the people we serve. We have never wavered in that belief or behavior. After only a couple of months, it became apparent we needed to re-think our level of activity and engagement. ASPMN leaders discovered there were many issues with which it was appropriate for us to become involved. There was a void of voices like ours and we saw an opportunity to fill it. Our voice needed to be heard and our position needed to be stated. Within a few short months, our organization went from monitoring issues to engaging in them, thus demonstrating our need to be at the table. We brought understanding and awareness of pain management to ever-greater audiences. We were now an active participant. We began to hold meetings with Congressional staff members to advance issues such as supporting the National Pain Care Policy Act (U.S. Congress, 2009) . That act called for adequate pain care research, education, and treatment as national public health priorities. It passed in the House of Representatives, but despite numerous efforts, it was not taken up by the Senate. Although it took many years, elements of it were put into the 2010 Patient Protection and Affordable Care Act (ACA; US HHS, n.d.). We were instrumental in arranging for ASPMN leadership to speak at Capitol Hill briefings. Two of ASPMN's presidents, Ann Schreier, Ph.D., R.N. and Jo Eland, Ph.D., R.N., were among the first to address legislators and staff at these briefings. They were soon followed by others. Between 2009 and 2011, the governmental influence and visibility of ASPMN were significantly enhanced within the pain management community and Congress. One of our early issues was the proposed Food and Drug Administrations (FDA) Risk Evaluation Mitigation Strategy (REMS) for opioid medications (American Pharmacists Association, 2009). We provided oral and written testimony to FDA meetings outlining our position. Among other things, we stated that the REMS safety program should protect and not interfere with patient access to these important medications not include patient registries cover the entire class of opioid medications (not just longacting) develop education programs with extensive expert input Many of the themes in our testimony, such as the need for pain management education by all healthcare providers, would be repeatedly reiterated and continue to be stressed to this day. Although many of our recommendations were accepted, not all were. We pushed to have the entire class of opioid medications included, and although it would take nearly a decade to happen, it finally did! As our activities evolved, we were invited to stakeholder meetings at the White House, Office of the Vice President, Capitol Hill, and other federal administrations including that of the Secretary of Health and Human Services. Beyond meetings, ASPMN leadership also provided testimony, comments on proposed rules presented by the Drug Enforcement Administration, and other federal and state agencies. We began providing "member alerts" to update ASPMN members on issue that might affect them and requested that members provide direct input to their Senators and Representatives regarding their position on issues. We used videos to share our member's stories with elected officials, explaining issues faced by them and those they cared for. The member participants shared the expertise of ASPMN members and the official positions of ASPMN regarding issues pertinent to elected officials and others. In 2011 the Institute of Medicine (IOM) report "Relieving Pain in America" (IOM, 2011), which provided much-needed information, was released. A key recommendation of that report was not only to consider pain as a symptom of injury or illness, but to develop a comprehensive, population-level strategy to address persistent pain as a complex chronic disease process. Although the numbers were adjusted from the initial report, it still showed that nearly 100 million adults are encumbered with pain, and the costs to the economy exceed half a trillion dollars. To ensure that the report did not collect dust on a shelf, as do many such reports produced by government agencies, stakeholders like us had to disseminate the information. From the moment the report was released, in virtually every meeting held on Capitol Hill and with federal government administration officials, ASPMN representatives talked about the IOM report. Surprisingly, though, even today, when we talk about the report, we find that many are unaware of its existence. In some speeches from members of Congress, the IOM report is mentioned as if it were brand-new information. Despite diligent efforts and tireless work, the need for education and advocacy remains. We must continue to be present so that pertinent information stays in the forefront and is not forgotten. ASPMN greatly benefits from the longevity of our advocacy activities. This historical knowledge of more than a decade of commitment contributes to ASPMN being understood as an important voice with which other organizations wish to associate. From our first efforts, the active role assumed by ASPMN proved fruitful. We made, and since then have further cemented, strong relationships with many other professional nursing and pain management organizations. Since there is much information to track at the federal and state level, having the ability to share information among organizations and discuss strategy to advance or block initiatives is critically important to success. There is power in a larger collective voice. Some organizations cannot engage to the level we can, and we cannot always engage at the level we would like. That is why working within a group has been beneficial for us. ASPMN continues to be active in advocacy activities. Joining to leverage resources with other organizations has enabled us to advance our issues, and in many cases to do so with less financial and staff time commitment. We are fortunate for many reasons that people have so much trust in nurses. Regarding advocacy, this trust has allowed us to enter discussions to which other healthcare providers and suppliers have not been privy. Everyone knows nurses are the frontline clinicians of healthcare. Their knowledge of and interaction with patients is unmatched by others in healthcare. In the early days of our advocacy, the voices of other healthcare providers were stronger. As the years have gone by, that has changed. Legislators have greatly increased their interest in what nurses have to say, a result of the work of ASPMN and other nursing organizations during the last dozen years to unify what was once a more splintered nursing voice. Those collaborative relationships have benefitted us and speak to the power and influence of nurses. The legislators who are members of the Congressional Nursing Caucus understand the importance of nurses. When members of the caucus are invited to receptions, most of the legislators in leadership attend. That is not always true for events held by other caucuses. A recurring theme of our efforts, dating back to the introduction of the REMS, is the need for more pain management education among healthcare professionals. We have stressed that education is necessary for all healthcare providers, not just those who prescribe. Education of all clinicians is key in providing the most effective tools to healthcare workers who care for patients with pain to optimize care and educate patients. Major healthcare issues have been in the spotlight from the beginning of our advocacy efforts. Shortly after ASPMN became politically active, the introduction and beginning discussions of the Patient Protection and Affordable Care Act began. We have always fought for patient access to quality healthcare, and this legislation opened the door to greater discussions that we could only have imagined just a year or two prior. At nearly the same time, interest in opioids accelerated. Over the past decade, we have addressed a flurry of bills introduced in the House and Senate that sought to either eliminate or control opioid prescription (e.g., limiting dosages and refills). This led to concern in the pain management community regarding access to medications. For ASPMN, concern has never been about a single type of medication. We have long promoted the importance of multimodal pain management, and, more importantly, an individualized approach to managing pain. As a result of the rising attention given to opioids, questions were proposed about when, how, or even if certain medications should be prescribed, and if prescribed, to what patient populations they should be prescribed. ASPMN was involved in many meetings convened by the coalitions in which we participated. We discussed what recommendations we could provide to policymakers based on our collective expertise to address the questions with a rational approach and prevent unintended consequences that could result from actions taken by lawmakers. ASPMN representatives also attended many FDA and other federal government-convened meetings and task forces. It soon became evident that decisions about medications, dosing levels, etc. were being made without research to validate those recommended changes. Anecdotal information ruled during the days to follow. A pendulum whose previous swing may have resulted in prescribing too many opioid medications was now swinging in the opposite direction. ASPMN representatives sought more pain management research to support policy decisions. Those efforts continue today. Groups opposed to opioid medications for noncancer pain arose, while groups that supported the use of opioids became targeted as "pushers of opioids." The resulting effects were long-lasting. The struggle was to not have ASPMN pigeonholed into promoting one type of pain management. We have always supported safe and effective multimodal pain management, knowing that there is not one therapy that is right for everyone. In this time period, opposition to opioid medications drowned out the rational call for the use of all appropriate pain treatments. The lines were being drawn within public opinion, and thus the opinion of legislators was either for or against it. Abuse deterrent formulation (ADF) technology was on the rise. Similarly, increased availability and usage of naloxone was encouraged. At the same time, the Drug Enforcement Administration was proposing to reclassify hydrocodone-containing products to Schedule II, and the CDC was releasing opioid-prescribing guidelines. Within that climate, ASPMN representatives advocated for improving safe and effective pain management. Our activities included urging Members of Congress to bring stakeholders together to address prescription medication diversion and abuse; sending a letter to the Minister of Health in Canada about tamper resistant drugs (referred to ADF in the United States); and supporting nurses in the Veterans Administration to maintain their scope of practice. ASPMN shared a great deal of educational information, including several position papers. We found we also needed to provide something quick and easy to read that succinctly stated the official positions of the organization. Such a tool was needed when communicating with legislative staff, but also to post on the ASPMN website so people could be referred to it. The hope was that those who read it would want to learn more, allowing us to share even greater amounts of material and our collective expertise. To fill that need, the ASPMN Communications Committee created official advocacy statements. Currently, there are six such statements that address education, multimodal therapies, abuse deterrent formulations, integrative therapies, medical marijuana, and the use of opioids for chronic pain while preventing abuse and diversion. Being active in governmental affairs has its advantages, but also its challenges. In recent years, some organizations sought to demonize any groups associated with opioid prescribing by portraying them as being manipulated by an arm of medication marketing. If an organization received financial support from an opioid manufacturer, they had a target on them. One Senator began an investigation to find out what organizations received money and how much for any type of pharmaceutical support, including educational. Many organizations were asked for this information, and ASPMN was one of them. Following receipt of a letter from the Senator, we contacted her office and discussed what specific information she was looking for. ASPMN leadership has always been transparent regarding any financial support received and for what purposes it is used. ASPMN provided the information requested, openly sharing how it was used. The leadership of ASPMN consistently follows the organizational mission and welcomes support from companies that agree with the mission. ASPMN leadership has never agreed to compromise what we stand for to receive support. That is not who we are, nor has it ever been what ASPMN is about. We are an organization that does things the right way, and when advocating for something, we can always hold our heads high. Through all of this, we continued our advocacy work, which included commenting on proposed regulations and reports such as the National Pain Strategy (Mackey, 2014) , delivering governmental affairs webinars, and giving presentations at other organization's meetings when invited to do so. Three major pieces of legislation that we worked on have set our advocacy course for the last several years. They have now become law. The first was the Comprehensive Addiction and Recovery Act (CARA; U. S., 2016), which was the most comprehensive effort undertaken to address the opioid epidemic. It was followed by 21 st Century Cures Act (U.S.F.D.A., 2020), designed to accelerate medical product development and bring new innovations to patients. The third was the Substance Use Disorder Prevention That Promotes Opioid Recovery and Treatment for Patients and Communities Act (Support Act; CMS, 2019), which is a product of more than 100 separate bills to address the opioid epidemic. The CARA Act created the Pain Management Best Practices Interagency Task Force Report to provide updates, identify gaps and inconsistencies, and deliver recommendations. This report was released in the spring of 2019. The recommendations are widely supported. We have been working to have a Senate or House hearing convened where we and others can testify about not just the importance of the findings, but how they can be implemented to ensure that best practices and proper guidelines are followed. It is a large report, so we have identified three widely accepted recommendations to start with: a patient-centered, multimodal, multidisciplinary, biopsychosocial pain model; adoption of improved payment for access to interventional and complimentary nonopioid treatments; and increased patient and provider education to improve pain management and reduce opioid misuse. Since the early days of our advocacy efforts through today, we have advocated and will continue to advocate for proper funding for programs like Title VIII Nursing Workforce Development programs and the National Institute for Nursing Research (NINR). Title VIII supports nursing education, which strengthens the nursing workforce and helps to meet the growing demand for nurses at all levels. NINR supports scientific research, resulting in improved patient care. These programs have been underfunded for a long time, and each year we tirelessly seek increases because it is imperative for these programs to function adequately to meet the needs for which they were created. Although there have been times in the process of seeking funding when it was necessary to accept less than desired, we did not settle for that as the result. As long as a true need for greater funding exists, we continue to advocate for more. Sadly, some organizations with which we worked closely no longer exist. That is unfortunate not only for us, but also for pain management professionals and patients. As organizations disappear, so do the voices of patients and expert healthcare providers with the knowledge to move from a reactionary approach to one that is evidence-based. The voices of those advocates must always have a forum, and we will continue to work to make sure that they do. COVID-19 largely silenced the discussions being held on ways to properly address the opioid crisis; however, that will likely change when we get to the other side of the pandemic. While reports have shown that opioid prescribing has lessened, that does not mean there is no remaining cause for concern. In fact, there are concerns about increased abuse and misuse during the pandemic. Illegally obtained opioids are filling the space of prescription medications. Mental health issues, along with abuse and misuse of medications, will again be a primary legislative focus. We will continue to support the Helping End Addiction Long-term (HEAL) initiative (NIH, 2019) . This initiative supports funding and research on nonpharmacological approaches to pain. The efforts of ASPMN have never been focused on one treatment for pain. Rather, we seek to have a variety of treatment options in our toolbox so clinicians can use a multimodal approach to individualize care to address specific needs and achieve the most positive outcome. The future of ASPMN is strong. The tide has started to shift. Patients with pain who were feeling abandoned because of the decisions being made to address the opioid epidemic are speaking out, and they, along with the healthcare providers who support them, are being heard. Personal stories, about how decisions made to limit access to pain medications have negatively impacted patients are being heard with greater frequency. The goal is to achieve appreciation and adoption of a balanced approach for pain management. That is an approach where the pendulum stays close to the middle rather than swinging to one side or the other. Since the beginning of ASPMN advocacy efforts, on more than 200 occasions we have sent letters of support or opposition, provided testimony, and more to federal government officials, Members of Congress, state legislators, and others. We will continue to leverage our collective voices and advocate for what is in the best interest of patients with pain and those who provide compassionate care for them. We must learn from our past experiences to use the knowledge, experience, and relationships we have gained over the last decade to leverage, promote, and advance issues as we enhance our position as experts in pain management. Legislators like to hear from nurses who are on the front lines of patient care. This tendency will only increase following the pandemic, during which a greater light was shined upon the roles and importance of nurses. That seems fitting since 2020 is the Year of the Nurse. As we celebrate that, and the 200th anniversary of the birth of Florence Nightingale, we must always remember that when we speak, we are not just representing our ASPMN members, but over four million nurses because every nurse is a pain nurse. White paper on designing a risk evaluation and mitigation strategies (REMS) system to optimize the balance of patient access, medication safety, and impact on the health care system H.R.6652 -Nurses' Higher Education and Loan Repayment Act of Relieving pain in America: A blueprint for transforming prevention, care, education, and research, xvii National Institutes of Health HEAL Initiative H. R. 756 (111 th ): National Pain Care Policy Act of Title VIII of the Public Health Service Act [42 U.S.C. 296 et seq 21 st Century Cures Act Human Services (n.d.). Patient Protection and Affordable Care Act The Comprehensive Addiction and Recovery Act (CARA) Forces and issues influencing curriculum development