Below are the Foundation s comments on the draft National Pain Strategy.

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1 May 20, 2015 Linda Porter, PhD National Institute of Neurological Disorders and Stroke National Institutes of Health 31 Center Drive, Room 8A31 Bethesda, MD Dear Linda: The Arthritis Foundation, on behalf of the more than 50 million adults and children in the U.S. living with arthritis, welcomes the opportunity to comment on the draft National Pain Strategy. The draft strategy goes a long way towards addressing the scientific and systemic barriers in tackling pain care, and we commend you for your hard work in developing this strategy. Arthritis is a chronic, often debilitating disease that can cause severe pain in people who suffer from it. Chronic pain can be hard to treat and manage, and chronic pain associated with arthritis limits the ability of millions of people to work or do daily tasks. There are many treatments that can eliminate or reduce pain, but they are not effective in all people with arthritis. For people with well-controlled arthritis or artificial joints, pain can still linger. Even when effective, pain treatments can be less than optimal because of adverse side effects and related complications. Finding effective ways to manage pain in all people with arthritis and ensuring that they have access to care are key priorities for the Arthritis Foundation. Below are the Foundation s comments on the draft National Pain Strategy. Population Research The draft strategy seeks to improve prevention (primary, secondary, and tertiary) and management of pain in the U.S. People with arthritis can benefit from all three types of pain prevention. Many people develop osteoarthritis (OA) as a direct result of injury; in fact, people with ACL injuries are up to 10 times more likely to develop OA. There are a number of treatments that can limit and even prevent the development of disabilities in people with arthritis, including the use of biologic drugs in many people with inflammatory forms of arthritis. Objective 1: Estimate the prevalence of chronic pain and high-impact chronic pain in the general population and in primary care settings, both overall and for anatomically defined pain conditions and for various population groups. We support this objective. For some people with arthritis, pain is systemic and experienced throughout their bodies, and for others, it is experienced in specific

2 locations, such as the lower back or knees. It is important to have robust data on the prevalence of chronic pain, both for population groups that experience pain systemically and for people with anatomically-defined pain conditions. The ability to use a refined set of measures to evaluate longitudinal pain outcomes can greatly improve our understanding of pain and our ability to inform research needs. We also appreciate inclusion of patient advocacy organizations and people with pain as key stakeholders. Objective 2: Refine and employ standardized electronic health care data methods to determine the extent to which people with common pain conditions, including those from vulnerable groups, receive various treatments and services, the costs of these services, and the extent of use of treatments that best evidence suggests are underused, overused, effective, and ineffective. We support this objective, and appreciate that arthritis disorders are included as a diagnostic cluster. A pain research network can yield important data on the methods and challenges of treating people with arthritis for pain. Again, we appreciate inclusion of patient advocacy organizations and people with pain as key stakeholders. Objective 3: Develop a system of metrics for tracking changes in pain prevalence, impact, treatment, and costs over time that will enable assessment of progress, evaluation of the effectiveness of interventions at the population health level and identification of emerging needs. We support this objective. There are 9 arthritis-related Healthy People 2020 objectives, many of which directly relate to pain and its related limitations. Adding measures on high-impact chronic pain and the value of health care and preventive services will elevate pain and prevention as important public health priorities. Gathering data on prevention strategies across federal agencies is also very important. For example, injury prevention can prevent the on-set of post-traumatic osteoarthritis (PTOA), which specifically occurs as a result of an injury such as bomb blast-related tears or gunshot wounds. Data on prevalence and possible interventions for PTOA may be gathered by CDC, but also by DoD and the VA, since PTOA is a particular problem among service members and veterans. Both the DoD and the VA support research on PTOA. Pooling this data will help in coordinating prevention activities. Further, arthritis management programs that are coordinated by CDC are also recommended for veterans; it is important that DoD and the VA have access to this information. Prevention and Care Objective 2: Develop nation-wide pain self-management program Self-management arthritis programs have proven to reduce the impact of arthritis symptoms in people who use them. For example, the Arthritis Self-Management Program (ASMP) is a science-based program that helps people to learn and practice techniques and implement a self-management plan. Participants in the ASMP continue to report

3 benefits of the program one year out. Our goal is for all people with arthritis to have access to these types of programs. The CDC Arthritis Programs provides grants to 12 states to run programs, including self-management programs like ASMP. Ultimately we would like every state to have an Arthritis Program. In the meantime, we encourage you to consider ways to ensure people in states without these resources can still have access to self-management tools. We appreciate inclusion of patient advocacy organizations and people with pain as stakeholders; it is important that patients are consulted first and foremost about what self-management techniques work best for them. Patient tools like mobile applications can also help people manage their disease. We encourage development of tools that can help people with arthritis track their selfmanagement activities and symptom levels. This data can be incorporated into their electronic health records to help devise the best treatment plans over time. Evidence-based programs like those supported by CDC should be available as covered benefits under public and private integrated health systems. The draft strategy calls out the VHA as one such public health system arthritis management programs are particularly important for veterans, as they have a higher rate of arthritis than civilians. Service members who sustain injuries are at higher risk for developing OA/PTOA and experiencing chronic pain. Self-management programs can greatly benefit this population. Objective 3: Develop standardized, consistent, and comprehensive pain assessments and outcome measures across the continuum of pain. We support this objective; pain assessment is a key component of the Arthritis Foundation s Scientific Strategy. We recommend the development of a pain index that could document the therapeutic value of a prescribed medication or non-pharmacologic treatment to provide clinicians and people with pain the objective information needed to maintain health insurance coverage. One option for developing a pain index for arthritis is by combining expertise from existing efforts such as Outcome Measures in Rheumatology (OMERACT) and Patient Reported Outcomes Measurement Information System (PROMIS) that goes beyond clinical measures and captures the psychological and social aspects of living with pain. Registries are also an important component of pain assessment, and we encourage robust use of registries as part of this objective. Arthritis registries such as an EHR-enabled registry (RISE), the Arthritis Internet Registry (AIR), and the Childhood Arthritis and Rheumatology Research Alliance (CARRA) help clinicians and researchers discover how arthritis affects daily activities and understand the impact of various treatments.

4 Disparities Objective 1: Reduce bias and its impact on pain treatment by improving understanding of its effects and supporting strategies to overcome it We support the recommendation to convene an expert workgroup to assess the state of the science across diverse populations. There are a number of disparities that exist for arthritis within various racial and ethnic groups, and a workgroup can help illuminate them and work to fill the gaps. Objective 2: Improve access to high-quality pain services for vulnerable populations. We support this objective, and think more awareness of resources for pain is important for both patients and providers. An interactive web-based gateway could serve as a great central repository for patient and families to get connected with resources, but we also recommend a pathway for vulnerable populations without access to the internet to receive this same information. Objective 3: Facilitate communication among patients and health professionals. We support the creation of an expert workgroup to review and make recommendations on the effects of disparities in pain care. Objective 4: Improve the quality and quantity of data available to assess the impact if pain on higher-risk population groups. We support this objective, and think data standards and definitions will help in assessing the true impact of health care disparities on vulnerable populations. Service Delivery and Reimbursement Objective 1: Define and evaluate integrated, multimodal, and interdisciplinary care for people with acute and chronic pain, and end of life pain. We support the approach to find innovative, integrated models of care for people with chronic pain, and appreciate your inclusion of patient advocacy organizations and people with pain as key stakeholders. Many people with arthritis suffer from more than one chronic condition, and integrated care is a critical component to ensuring they are receiving the highest quality care. Objective 2: Enhance the evidence base for pain care and integrate it into clinical practice through defined incentives and reimbursement strategies. We support the development and implementation of population-based studies that will include representative samples of patients to provide practical approaches for assessing therapeutic effects. Leveraging and enhancing the use of patient registries will be

5 extremely beneficial in achieving this goal. We also support the recommendation to disseminate the results from the pilot projects and studies to stakeholders including patient advocacy organizations. This type of data can greatly inform our research strategy in the future. Objective 3: Tailor reimbursement to promote and incentivize high-quality, coordinated pain care through an integrated biopsychosocial approach that is costeffective, comprehensive, and improves outcomes for people. While we support the effort to promote and incentivize high-quality coordinated pain care, we want to ensure that patient access to care and services is not hindered as an unintended consequence of tailoring reimbursement to achieve these aims. We encourage you to include a mechanism within this objective to monitor any changes to patient access as a result of implementing this recommendation. Professional Education and Training Objective 1: Develop, review, promulgate, and regularly update core competencies for pain care education and licensure and certification at the undergraduate and graduate levels. We appreciate your inclusion of a provision to solicit input from the public, including people with pain. It is important that the experiences of people with pain are incorporated into professional education and training to promote understanding and empathy about life with acute and chronic pain. Public Education and Communication Objective 1: Develop and implement a national public awareness and information campaign about the impact and seriousness of chronic pain, in order to counter stigma and correct common misperceptions. There are many misperceptions about arthritis; many people think it is an old person s disease and simply involves aches and pains. In fact, two-thirds of people with doctordiagnosed arthritis are under 65 and for many people it is a complex, systemic disease that includes varying levels of pain and limitations over the course of decades. These types of misperceptions can lead to discrimination against people who suffer from chronic pain and can impede their ability to receive proper accommodations in various settings, let alone empathy and emotional support. We commend you for making public education a priority and support the strategies to develop and implement a national public awareness campaign to inform the public about the seriousness of pain. A scientific approach to such a campaign is important, so that implementation of the project is closely monitored, evaluated, and assessed for effectiveness. We appreciate your inclusion of advocacy groups as representatives on the advisory panel and as stakeholders throughout this project.

6 Again, thank you for the opportunity to comment on the draft National Pain Strategy. We look forward to future opportunities to work with you to address pain. Should you have any questions or if we can be of assistance in any way, please contact Sandie Preiss, Vice President of Advocacy and Access, at or Sincerely, Sandie Preiss Vice President, Advocacy and Access Arthritis Foundation