INSPIRING HOPE, EMPOWERING ACTION, IMPROVING LIVES -ui: 5 . 1. .1-Ameriwm Pain Foundation (R) A United Voice of Hope and Power over Pain A B OU T T H E A M E R I C AN PAIN FOUNDATION Founded in 1997, the American Pain Foundation (APF) is an independent nonprofit 501(c)3 organization that serves people affected by pain. APF speaks out with people living with pain, caregivers, health care providers and allied organizations, working together to dismantle the barriers that impede access to quality pain care for all. O U R M I S SI O N The American Pain Foundation educates, supports and advocates for people affected by pain. Dear Friends: Now that we've said farewell to 2010 and the congressionally mandated "Decade of Pain Control and Research," we have entered a new decade populated with many hurdles to overcome. The American Pain Foundation (APF), along with the staunch support from our members, board of directors, volunteers and alliance partners, has heeded the charge to improve the lives of people living with pain and worked diligently to ensure that efforts did not live in words alone, but came to fruition through action. I am proud to share with you just a small sampling of the work APF has done the last year of this decade to honor its mission to educate, support and advocate for people affected by pain until pain is no longer a major health care problem. With a membership of close to 100,000 and growing, APF has enhanced and grown our education, support and advocacy services and programs to better serve our constituents. In 2010, APF rang in the New Year with the launch of our Breakthrough Cancer Pain Spotlight, an important addition to our educational spotlight series that provides in-depth information and resources on pain-related topics. Just in time for summer -- when many people increase their physical activities --"Oh, My Aching Back!" Spotlight was released chock full of tips and information on preventing and managing back pain. As the climate in our country becomes increasingly focused on the risks of pain medications, APF has focused on developing a new educational program called PainSAFE(TM) (Pain Safety & Access For Everyone). Experts wrote and developed materials to provide people with pain and health care professionals information and resources on how to safely use pain treatment options to help lower the risks associated with pain therapies, and in turn, improve access to effective and appropriate pain care. In September, a month designated as Pain Awareness Month, APF unveiled its new PainSAFE website and other educational activities about safety. APF has grown into the largest advocacy organization for people with pain. APF and its volunteers have continued to make inroads in raising awareness about the need for better pain management and improving pain care policy. In 2010, staff members and volunteers participated in close to 100 policy activities from testifying at legislative hearings and scheduling meetings with state and national representatives to securing city and state proclamations for Pain Awareness Month. In September alone, more than 530 individuals submitted letters to their legislators sharing their story and urging improvements in pain care legislation. As we move forward, APF stands firm in its commitment to improve access to pain care for all. We ask you to continue to partner with APF in this journey and persevere with us; triumphantly climbing over any hurdles and breaking down the barriers that are preventing people with pain from receiving the necessary pain care they rightfully deserve and need. We can only do this successfully if we speak out for the rights of people with pain together. Sincerely, Will Rowe Chief Executive Officer 1 E D U C A T I O N Too often, people with pain don't receive the pain management they deserve. This can result in years of needless suffering. APF provides a wide array of educational programs and support services to help people affected by pain. EDUCATION When people know more about their pain, they are better equipped to make the right decisions with their health care providers and advocate for the pain care that works best for them. APF listens to the experiences of people living with pain and offers pain education and resources to help them self-advocate for optimal pain care. Online and print publications and news alerts continue to be in high demand and provide accurate and timely information to people affected by pain. APF's newsletters, booklets, topic briefs, and online modules are filled with pain-related news, tips and practical advice to help people with pain take charge of their pain care and reclaim their lives. Topics cover different pain conditions, co-existing health issues often accompanying pain and its treatment (e.g., depression, sleep disturbances, constipation), finances, family matters, tips for coping and much more. Here is just a sampling of APF resources: o Pain Community News, APF's esteemed quarterly newsletter, has a print circulation of more than 68,000 and many more online readers. In 2010, PCN explored such issues as health decision making, cancer pain, the pain-sleep cycle, the healing power of gardening, medication safety, nutrition and pain and much more. Book reviews, APF's volunteer corner and fast facts were recurring items. o Pain Research & Practice Update in 2010 provided conference coverage of the American Academy of Pain Medicine's 26th annual meeting and reported on studies related to chronic pain after breast cancer surgery, migraine and stroke, texting and shoulder/neck pain, acupressure and tai chi for pain relief, the role of vitamin D in chronic pain and much more. 2 o Pain Monitor is a monthly electronic newsletter that provides links to the latest pain-related news and research, legislative updates and highlights of APF events. o Core educational booklets -- Pain Resource Guide: Getting the Help You Need; Targeting Chronic Pain: Your Personal Notebook; Access Matters: Making Sense of Health Coverage; and Treatment Options: A Guide for People Living with Pain -- continue to help those living with pain and their caregivers. o Top 10 Tips provide practical advice on making your voice heard to advocate for better pain care, coping with cancer-related pain, preventing and finding relief from back pain and medication safety. All APF materials are created to meet the unique and growing information needs of people affected by pain and their caregivers. Is Fibro the Cause? Pilot Project in Missouri Fibromyalgia affects up to six million Americans, making it one of the most common musculoskeletal pain conditions in the United States. Yet it often remains undiagnosed and misunderstood, resulting in unnecessary pain and disabling symptoms for many. To raise awareness about fibromyalgia, APF partnered with community and state-based alliance groups and fibro advocates in Missouri to pilot a fibromyalgia project. More than 8,000 print copies of APF's Is Fibro the Cause? online toolkits were provided free to Missouri residents at community events and presentations on fibromyalgia and at designated locations throughout the state. The toolkit contains helpful tips and resources including how to recognize the signs and symptoms, a worksheet to help track symptoms and facilitate communication with your health care provider, and tips for living well with fibro. TOP 10 TIPS Winter 2011 Volume 11 - Issue 1 MAKE THE MOST OF YOUR MEDICAL VISITS The following list assumes you have a healthcare provider you like and respect, who is doing his or her best to help you, but it seems as though your appointments are rushed and you are left with lingering questions or concerns. Both you and your provider want the same thing: a return to normal function and quality of life through good, comprehensive pain control. Remember, this is a collaborative effort and you play an instrumental role in making interactions with your provider successful. Unraveling the Role of Inflammation & Pain: Two doctors share their perspectives on the inflammatory process starting on page 3. Weighing In on Backpack Safety Steps for preventing injury and pain among kids It's a common sight: students from elementary through high school age walking home hunched over, weighted down by backpacks that appear jam-packed with everything from oversized textbooks and bulky binders to school supplies, iPods and cell phones. Whether it's casually slung across one shoulder or double their size, kids will try to shift their bodies to fit the weight of the backpack. Used properly, a backpack can help students transport schoolwork and other personal items between school and home. However, backpacks are often overflowing and improperly worn -- both of which can cause some troubling health problems and may result in pain. "School nurses are increasingly concerned about student complaints of pain in the back, neck and shoulder areas, as well as headache discomfort, which may be precipitated by the increased use of backpacks by students," said Sally Schoessler, RN, BSN, SNT, MSEd, director of Nursing Education, National Association of School Nurses (NASN). These days, backpacks come in a slew of shapes, sizes, colors and designs. NASN recommends children's backpacks weigh no more than 10 to 15 percent of the child's total body weight. A heavier (continued on page 2) Here are some hints to improve communications with your provider: 1. Identify your top concerns, questions, and symptoms. Write them down in order of importance and don't expect to get through the entire list at each visit. Even if all of your concerns aren't fully addressed during that visit, they will spur additional appointments and/or treatment options. 2. Manage expectations; most pain issues will not be resolved in a single visit. Be patient. Use a pain scale; write down your definition of what each level on the pain scale means to you in terms of symptoms, severity, sensations, emotions, functional ability. 3. Keep follow up appointments. Your provider may suggest coming back if you're not feeling better or to discuss how new treatments are or aren't working. Be sure to keep these visits to get through your list of concerns and report new symptoms and side effects. 4. Schedule your appointment at the end of the morning or the end of the day. If you have the last appointment, your provider may not feel as rushed to get through your visit in order to get to the next patient. You may have to wait a while, but he or she may give you extra time to make up for the tardiness. Of course, be sure your appointment is around the time of the day when your energy level is high. 5. Bring a list of all the medications--prescription, over-the-counter, and herbal--that you take. Include information about medications you've used in the past, what has not worked, side effects and allergies. This will cut down on the time spent getting him or her up to speed. I nflammation is one way in which our bodies react to infection, irritation and injury. But, what is it? Inflammation is a highly complex process that, more often than not, helps the body heal. Remember as a kid you were taught to put ice on an injured area to reduce the swelling? That was to help reduce inflammation and the related pain and swelling. But when inflammation doesn't subside over time (also called a pro-inflammatory state), the related pain, redness and swelling can continue and become problematic. In fact, studies have shown that chronic inflammation can undermine one's health, leading to a host of other health problems including arthritis, heart and lung diseases. We asked two expert physicians -- a rehabilitative medicine doctor and a (continued on page 3) APF'S 10,000 VOICES CAMPAIGN NOW UNDERWAY The Power of a Story -- Your Voice Matters! Storytelling is one of the most compelling ways to illustrate the devastating toll unrelieved pain can take. Stories can also help to enhance understanding about pain and promote health education. APF's ongoing 10,000 Voices campaign gives a face and a voice to people affected by pain. It is a unique opportunity for you to tell your personal story, share the experiences that you or a loved one may have faced when seeking pain treatment, or offer messages of hope for those seeking relief. Health care providers who work so hard to help alleviate pain in those suffering also have a forum to share challenges and successes in providing appropriate pain care for their patients. Your voices of struggle, hope and inspiration help expose the persisting challenges VITAMIN D & CHRONIC PAIN to effective pain management and also speak to the resiliency of the human spirit. 4 Page These stories can inspire others to overcome the barriers they face along their PAIN RESEARCH HIGHLIGHTS personal pain journey. Medications are hard to recall Migraines up risk of stroke Speak up! Visit http://voices.painfoundation.org to share your voice. Chronic pain after breast cancer surgery Page 6 A semi-annual publication of the American Pain Foundation Summer 2010 SCIENTIFIC MEETING SHOWCASES LATEST PAIN RESEARCH AND CHALLENGES IN ERA OF HEALTH CARE REFORM In February, pain management professionals gathered for the 26th annual meeting of The American Academy of Pain Medicine (AAPM) in San Antonio, TX. The conference highlighted the latest clinical research related to three areas of pain medicine: interventional techniques, practice management and patient-focused care. The theme of this year's meeting, Advancing Science and Practice of Pain Medicine in a Changing Healthcare Environment, provided timely information for practitioners grappling with the changing realities of their field. New federal guidelines for pain care, training for implantable devices, the proper use of opioids and medical-legal issues were among the hot topics discussed during the four-day event "We wanted to design it so that participants could use this [conference] as a very specific learning tool to get better at what they normally do or as a broad review to get better as an overall pain physician," said Timothy Deer, MD, conference co-chair and CEO and president of the Center for Pain Relief in Charleston, WV. Pre-conference sessions covered the latest advances in interventional therapies, such as neuromodulation, stimulation of the nervous system, spinal interventions and advanced surgical techniques. Interventional therapies were featured because that area progresses so rapidly, Dr. Deer noted. of pain as a disease process in an of itself, not just a symptom or a warning system that something is wrong in the body. With ongoing pain, pain signals remain active. Over time, this heightened response may: o Harm the nerves, blood vessels and organs o Suppress immune function o Result in excessive inflammation o Delay healing "This conference reflects one of the most important principles of caring for pain: Treat early and treat aggressively. Evidence continues to emerge -- from the research lab to clinical practice -- that the severity and persistence of pain can be modified through early intervention," said Will Rowe, chief executive officer of the American Pain Foundation, who also attended the meeting. "Treating pain early and aggressively can prevent some of the longterm and severe consequences of the failure to treat. In our daily work to improve pain care in this country, we think it's important to remind people that all approaches to treating pain have risks, including the failure to treat it." Science is beginning to uncover why chronic pain sets in and potential triggers or injury to the nervous system that allows pain to persist. 6. Take a minute to remind your provider of important things in your medical history or your life. If your medical history is complicated, bring your medical records with you to save time; he/she may not remember all aspects of your condition. Life stressors and anxiety can worsen pain symptoms, so be sure to tell your provider if you feel depressed or unusually anxious. 7. Doctors, nurses and physician assistants are people, too. Be respectful and mindful, and take the time to acknowledge that your pain must be very frustrating for your provider. As you know, finding the right treatment plan may mean multiple, perhaps unsuccessful efforts. Give him/her a chance; don't go in with an expectation that he/she will not be helpful. Continued on next page Top 10 Tips: Caregiving During the Holidays . . . . . 4 A Lesson from Katrina: Planning for Natural Disasters . . . . . . . . . . . . . . . . 7 Did You Know?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 Fast Facts on Plantar Fasciitis . . . . . . . . . . . . . . . . . 9 Ask a Sports Medicine Specialist . . . . . . . . . . . . . . . 10 All Pain is NOT the Same . . . . . . . . . . . . . . . . . . . . . . 11 APF Launches PainSAFE . . . . . . . . . . . . . . . . . . . . . . . 12 Volunteer Corner: A Tribute to PainAid . . . . . . . . . . . 13 From the Field . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14 Waging a War with an Invisible Comrade . . . . . . 16 APF Surveys . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17 Book Review . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18 Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19 RESEARCHER PROFILE Investigating CB2 Receptors in the Spinal Cord Page 8 RESEARCH IN BRIEF Page 9-10 CDC & ARTHRITIS FOUNDATION FOCUS ON OSTEOARTHRITIS Page 12 Pain: A Disease Unto Itself A recurring theme across many presentations and panel discussions was the ever-increasing recognition and appreciation Snapshot of noteworthy studies Pain medicine has evolved from a medication-centered practice to a specialty with a well-stocked armamentarium -- a diverse array of pharmaceutical, surgical, continued on page 2 3 E D U C AT I O N APF's educational Spotlight series sheds light on various pain-related topics, including: o Cancer pain o Fibromyalgia o Pain and end of life o Let's Talk Pain (a coalition effort that focuses on supporting positive patient-provider communications) o Military/Veterans and pain o Shingles/Postherpetic neuralgia (PHN) "Oh, My Aching Back!" As part of this educational series, APF launched "Oh, My Aching Back!" in 2010. Back pain will affect a majority of Americans -- eight out of 10 -- at some point in their lives, and it's only expected to become more common as our population ages and obesity rates continue to soar. This practical online guide educates readers about back pain and arms them with information and tools to talk with their health care provider about it. This new resource includes articles (e.g., The ABCs of Back Pain, Who's Who in Treating Back Pain, Finding Relief, Back Pain & the Workplace), tips for preventing and managing back pain, worksheets and self-care strategies, as well as personal stories from people living with back pain. Breakthrough Cancer Pain -- Breaking Through to Improve Cancer Care Although millions of Americans now live long after their cancer treatment ends, the cancer experience frequently leaves a high-cost legacy of pain for individuals, families and the health care system. Results from an online survey commissioned by APF and released on January 28, 2010, revealed that breakthrough cancer pain (BTCP) -- sudden, temporary flares of severe pain that occur even when pain medication is used -- is one of the most challenging aspects of having cancer according to three out of four U.S. adults who have ever been diagnosed with cancer and experienced this type of pain. 1 Breakthrough Cancer Pain: A Break in the Continuum of Care People who have cancer often experience pain from the cancer itself, treatment for it, or conditions related to it. About 30 percent of people in treatment for active disease and more than 75 percent of people with advanced disease have cancer pain.1 For many of those people, the pain becomes almost non-stop. Opioids -- a type of prescription pain medication -- may be indicated when pain is moderate to severe in nature. BREAKTHROUGH CANCER PAIN CAUSES NEEDLESS SUFFERING For a large group of individuals whose background pain is well managed, pain flares rip through the shield of scheduled medication. This is breakthrough cancer pain, and it can literally stop people in their tracks, interfering with their daily activities and damaging their quality of life. Breakthrough cancer pain is distressingly common. It occurs in: 50 to 90 percent of oncology inpatient settings 2, 3 Most (89 percent) home care and inpatient hospice settings2,4 Three out of four (74 percent) U.S. pain clinics 5 One in three (33 percent) community-based oncology practices 6 Breakthrough cancer pain is costly in many ways. It can create needless suffering, especially for those don't know that help is available or where to find it. People with unrelieved breakthrough cancer pain have reported anxiety, depression, loss of appetite, difficulty sleeping, trouble carrying out daily activities, strain on personal relationships, and interference with their cancer care. They also tend to have significantly higher hospitalization rates (36.9 vs. 22.5 percent) and higher estimated annual costs of care ($1.7 million vs. $192,000) and financial burden compared to people with cancer who don't experience this type of pain. 7 "There are non-opioid medical, psychosocial and other interventions. No one should have to suffer; something can always be done to alleviate suffering." - Carolyn Messner, DSW, MSW, LCSW-R, Association of Oncology Social Work In the 1980s and early 1990s, the oncology community focused attention on cancer pain and achieved rapid results; those achievements marked a high point for progress in managing cancerrelated pain. Soon afterward, the dramatically changing landscape of cancer treatment claimed oncologists' attention, and the elimination of cancer pain took a backseat. Rather than a lack of commitment to pain control, this situation reflects a lack of sustained focus on keeping up with evolving best practices in pain management. One result is that cancer survivors also find themselves without a "medical home" to provide effective control of their cancer-related pain, including debilitating breakthrough pain that can remain after treatment ends. "What people want and expect from their doctor is understanding, care and not to be abandoned." - Larry Driver, MD, University of Texas M.D. Anderson Cancer Center 1-888-615-PAIN (7246) | www.painfoundation.org To raise awareness about BTCP -- which is often unrecognized and untreated as a distinct problem even though it disrupts lives and increases medical needs -- APF created online content about the basics of BTCP; tips to make sure pain management is an integrated part of cancer care; treatment options; and answers to commonly asked questions. APF also produced a video featuring leading cancer experts, people who have experienced BTCP and their caregivers. 4 PainSAFE(TM) No single treatment option for pain management is without risk, and that also includes the decision not to treat pain. But these risks can be managed by educating consumers and health care providers about different treatment modalities and their safe use. In September 2010, APF proudly unveiled PainSAFE (Pain Safety & Access for Everyone) -- a new initiative to educate people with pain and health care providers on the appropriate and safe use of various pain management therapies. PainSAFE provides up-to-date information, programming and resources. The first sections to launch at www.painsafe.org featured information and tips for safely using opioid analgesics and implantable pain therapies. PainSAFE continues to expand in 2011 and beyond to include new sections on over-the-counter pain medications, such as nonsteroidal anti-inflammatory drugs (NSAIDs) and acetaminophen, as well as complementary and alternative therapies and other safety topics (for example, how to travel safely with pain medications). PainSAFE strives to educate consumers and health care providers in tandem to encourage consistent and parallel communication about important safety issues. Staying PainSAFE for People with Pain... PainSAFE educates the public and helps build their skills for safely using pain treatments. APF believes a more informed consumer will result in better treatment choices, safe use of these therapies and, in turn, improve outcomes. Staying PainSAFE for Health Care Providers... In parallel, PainSAFE offers health care providers a central hub of evidencebased information and practice-based tools to focus on safety and reduce the risks associated with various pain treatments. PainSAFE is part of the APF's ongoing commitment to advocate for timely access to safe and appropriate pain care for those affected by pain. SIX OPIOID SAFETY (SOS) STEPS: When Opioids Are Prescribed for Your Pain 1 Never take a prescription pain medication unless it is prescribed for you. 2 Do not take pain medicine with alcohol. 3 Do not take more doses than prescribed. 4 Use with other sedative or anti-anxiety medications can be dangerous. 5 Avoid using prescription pain medication to help you fall asleep. 6 Lock up prescription pain medicines. "Knowledge about how to safely use pain treatment options will result in better treatment choices with lowered risk and, in turn, improve access to pain care." -- Lynn Webster, MD, FACPM, FASA, clinical reviewer and the original creator of PainSAFE 5 E D U C AT I O N "American Pain Foundation has done wonderful things for so many people -- like myself -- who are in desperate need of proper pain care and advocacy. APF has given me hope that soon all will be treated with the care and respect they need so much." -- Person living with pain APF's website, which was visited by nearly 275,000 people in 2010, underwent a major redesign and reorganization. Integral to this undertaking was feedback solicited from a working group consisting of people with pain and caregivers. Their insights helped inform the new design, which is not only aesthetically pleasing and more engaging, but also provides better functionality. Through improved search capabilities, reorganized content and upgraded social media sharing options, members can more easily and effectively access information and communicate with APF and each other. The website redesign and reorganization provides areas to incorporate the educational materials gifted to APF by the National Pain Foundation (NPF) in 2009. Full integration of the NPF website will be complete in 2011. 6 "Not only does your website offer a world of knowledge, it's practical, understandable and very patient-centered and guided!" -- Person living with pain S U P P O r T People living with persistent pain often feel unheard, stigmatized and alone. APF continues to serve as a central hub for understanding and support. APF's support services and programs are designed to connect those affected by pain with others to help them cope and better navigate their pain care. PainAid, APF's online support community is available 24/7. In 2010, more than 25,000 people participated in PainAid's discussion boards and chats. Its 16 trained volunteer moderators and experts spent more than 4,000 hours interacting with members in these venues. Discussion boards include: o General topics such as specific chronic pain disorders, diagnosis and treatment, personal and family issues and more o Ask the Experts -- featured physicians, nurses, pharmacists, a podiatrist, a massage therapist and other practitioners of complementary therapies o Military/Veterans and the international discussion boards In 2010, APF hosted o 372 chats o More than 6,000 discussion board posts o Two webinar series on techniques for coping with and communicating about fibromyalgia and breakthrough cancer pain Pain Information Center (PIC), APF's toll-free information line (1-888-615-PAIN) and personalized email response service, provides people with pain and their caregivers current information, resources and support. In 2010, PIC responded to thousands of calls and emails from people -- many desperately seeking someone who could help them. Pain Resource Locator is a searchable database of local resources and disease-specific organizations that may be helpful in managing pain. Clinical Trials Center provides up-to-date information about the latest pain-related clinical trials in partnership with CenterWatch. This searchable database includes a complete listing of National Institutes of Health-funded studies, as well as recent U.S. Food and Drug Administration (FDA) medication and device approvals. "The people I have met through PainAid have become my friends and extended family. Thank you for providing this vital source of support!" -- APF Member 5 7 S U P P O r T MIlITAry/VETErANS PAIN INITIATIVE Pain continues to rank among the top medical complaints of active duty military personnel and veterans. An estimated nine out of 10 Iraq and Afghanistan veterans reportedly return home with some type of pain. APF's Military/Veterans Initiative continued to help military personnel and veterans in 2010 by providing free educational resources and peer-to-peer online support, and by empowering them to advocate for the quality pain care they deserve to lead a full, productive life. APF's Military/Veterans Initiative played an influential role in policy efforts that eventually led to the passage of the military and veterans pain care legislation in 2008, which has since had a profound effect on pain care within the Departments of Defense (DoD) and Veterans Affairs (VA). After the legislation became law, the DoD and the VA joined forces to create a pain task force and in May of 2010 they released a final report: Providing a Standardized DoD and VHA Vision and Approach to Pain Management to Optimize the Care for Warriors and their Families detailing 109 recommendations to improve pain care. A report on these recommendations and their implementation will be given to Congress in summer 2011 and APF will continue to follow and advocate for these improvements within the DoD and VA health care systems. In 2010, APF: o Participated in 17 speaking engagements on military/veterans topics, reaching more than 10,000 people o Responded to more than 400 emails and 250 online posts seeking resources and support for military personnel, veterans and their families o Participated in eight media interviews reaching more than three million people o Partnered with the Fisher House Foundation to distribute 4,000 copies of Exit Wounds: A Survival Guide to Pain Management for Returning Veterans and their Families to wounded warriors and their families staying in these houses. Another 500 copies were distributed free of charge to veterans attending the 2010 National Convention of the Disabled American Veterans. "I had no idea this or anything like it was available to veterans. I want to personally thank you for all you do for the many that suffer. Please keep up the good work." -- Veteran living with pain 8 A D V O C A C y I N A C T I O N In 2010, APF led the charge to improve access to appropriate pain care and, in turn, prevent needless physical, emotional and financial suffering for the millions of Americans who wake up in persistent pain every morning. Through calls to action, organized activities and awareness-building efforts, people with pain, caregivers and health care providers heeded the charge and advocated for better pain care by demanding change in policy and practice in their own communities and nationwide. Action Network APF's volunteer grassroots network of people living with pain, caregivers and health care providers provide the critical infrastructure for organized national and state-based advocacy efforts to improve pain care and policy in the United States. Serving on the front lines of the pain movement, APF Action Network (AN) leaders, advocates and members give a face and a voice to the multitude of issues that comes with living with pain or caring for someone in pain. With 95 AN leaders representing 35 states, the District of Columbia and Puerto Rico, a sampling of their vital work and contributions this past year include: o Organizing and participating in more than 340 community events nationwide o Distributing pain resources and educational materials to approximately 10,000 people o 36 media placements featuring their advocacy efforts and personal struggles with pain o Participating in 98 pain policy activities ranging from testifying at legislative hearings and scheduling personal meetings with their representatives to securing pain proclamations "I'm honored to speak out for the rights of people with pain. Unless you suffer with pain on a daily basis, you have no idea of what living with pain is all about." -- Action Network member 9 A D V O C A C y I N A C T I O N Annual Advocacy Summit Under the central theme of "Finding our United Voice: Conquering Pain Together," a record 127 AN leaders, pain advocates, national alliance partners, state-based collaborators and supporters from 37 states gathered together in Minneapolis for a three-day advocacy summit in April. In its fifth year, the summit provided participants an opportunity to network with others interested in transforming pain care in America; hands-on training and resources in community outreach, media advocacy, national and state policy advocacy; and an arena to showcase the accomplishments and impact leaders are making in their own communities. Andrea Cooper and Mary Vargas, PCAC members (Maryland) Jannie White, AN leader (Michigan) Summit roundtable discussions "The summit was fabulous! APF makes it possible for all of us to continue our important work in a connected and united [way]. We will change pain care in -- Action Network leader America for all Americans!" Online Advocacy Center/Alert System APF's online advocacy center promptly alerts members about emerging state-specific and national policy issues that could intentionally or unintentionally affect pain policy and access to treatment. Alerts provide recipients with background information and resources on the issue, as well as steps for taking action. In 2010, action alerts were sent related to: o Prescription monitoring programs o Step therapy legislation o Opioid prescribing rules o Acetaminophen safety o Risk Evaluation Mitigation Strategies (REMS) for opioids o PainSAFE initiative o Breakthrough cancer pain project o Pain awareness month activities and opportunities o Governmental regulations preventing access to care o Unbalanced media coverage reinforcing pain stigmas 10 Pain Awareness Month Sparks Action Locally and Nationally APF, its members and many other health care organizations and alliance groups observe Pain Awareness Month each September. During this month and throughout the year, APF and its volunteers speak out about the undertreatment of pain and the barriers that prevent effective pain care and dedicate themselves to raising awareness about the need for better pain care in communities all across the country. This year, APF organized an online Virtual March that served as a central hub for people participating in raising awareness about pain. Through this virtual movement, pain advocates were united and empowered to rally for improved pain policy and management from the comfort of their home or office. Participants took part in one or all of the following activities by: o Writing and submitting a letter to decision makers -- a key opportunity to share how pain has affected one's life and to encourage decision makers to make policy changes o Attending or organizing pain awareness events in their own communities o Joining APF's Action Network o Spreading the word using social media tools (Facebook, Twitter, blogs) o Adding their individual stories to APF's 10,000 Voices campaign APF's 2010 Pain Awareness Month campaign highlights: o More than 9,000 people attended the Virtual March, which was endorsed by 75 organizations o More than 530 individuals sent letters to their legislators urging improvements in pain policy o 32 Pain Awareness Month proclamations were issued by city and state leaders o APF's first ever online advertising campaign on Facebook reached more than 17 million people o 300 educational and awareness activities were held throughout the country o Securing 249 media print, broadcast and online placements reaching approximately 90 million people o More than 17,000 pieces of APF literature were distributed, providing valuable information and resources to people with pain o PainSAFE also launched during this time Far left: Pain Awareness Month display in cafeteria at St. Luke's Hospital in Kansas City, MO. Left: Action Network leaders and pain advocates receiving Pain Awareness Month proclamation for Nebraska. Shown from left to right: Action Network Leader Jan Tooker, Sharon Anderson-Towery, Lieutenant Governor Rick Sheehy, Renee Pickerel, Action Network Leader Jennifer Eurek, LaDonna VanEngen and Beth Nelsen. 11 A D V O C A C y I N A C T I O N 10,000 VOICES CAMPAIgN -- NEw IN 2010 During Pain Awareness Month, APF launched the 10,000 Voices campaign as part of its Virtual March. Designed to capture the voices of people affected by pain who unfortunately do not always have an outlet, the campaign featured an online virtual "wall" for people to share how untreated or undertreated pain has affected their lives and to offer messages of hope. Understanding that people voice their thoughts and feelings through different forms, APF provided easy-to-follow instructions for people to submit and upload their powerful written statements, individual photos or moving videos to the wall for the online community to view and better understand the impact of pain on individuals and families and how people are managing their lives. For some, the campaign served as a catharsis, and for others it reinforced their desire and commitment to be part of a movement working to raise awareness and improve pain care. APF Lends Its Expertise to Help Inform Health Care Professional Education In 2010, APF collaborated on 38 certified and non-certified, independent medical educational activities with four educational partners. This unique opportunity has allowed APF to incorporate the values and perspective of the person with pain into the educational paradigm of the health care provider to enhance the communication between health care professionals and patients and improve the overall quality of life for the people with pain. Activities included live symposia, Dinner Dialogues, e-newsletters, webinars and other education formats. Through these efforts, APF: o Became responsible for, and owners of, all curriculum content development for the National Initiative on Pain Control (NIPC) o Greatly expanded its reach to health care professionals and people with pain, growing membership by 1,500+ o Reached more than 1 million health care providers and increased awareness about the organization and its resources 12 Extra, Extra, Read All About It APF AND PAIN MAKE HEADlINES! Accurate, timely and balanced news coverage about pain is a critical component of raising awareness about the scope of pain, the impact it has on daily living and the need for effective pain care for all. APF has made significant progress in fostering working relationships with members of the mainstream and trade media. The "go-to" source for reporters seeking the latest facts, information and resources on pain, APF also offers story suggestions and connects reporters with leaders in pain management and people who can speak about their specific pain issue. Through online, print, radio and television outlets, APF's local and national media outreach efforts secured 1,600 media stories on pain in 2010 -- an increase of 1,255% from 2009. reaching more than 600 million people with important painrelated messages, APF spokespeople and advocates provided education, information and assistance to people with pain and combated the negative stereotypes and stigmas associated with pain. APF and the pain story was covered by a number of reputable national and local news media outlets including but not limited to: o o o o o News 14 Carolina o KQED 13 Y E A R JANUARY FEBRUARY MARCH APRIL APF's Spotlight on Breakthrough Cancer Pain survey released and online guide launched Facts ABOUT BREAKTHROUGH CANCER PAIN I N MAY JUNE It's different from chronic cancer pain. Even when cancer-related pain is well controlled with prescription medication, many people experience flares of intense pain that "breaks through" tolerable background pain. This breakthrough cancer pain can come out of nowhere or be triggered by something as simple as walking, changing positions, or even coughing or sneezing. Unlike background pain, it is episodic, short-lived and usually more intense. It's common and costly. Surveys have found that breakthrough pain: o Is very common among people with cancer-related pain. It occurs in 50-90 percent of oncology inpatient settings,1,2 89 percent of home care and inpatient hospice settings,1,3 74 percent of U.S. pain clinics,4 and 33 percent of community-based oncology practices.5 o Predicts more severe pain, pain-related distress, functional impairment, and relatively poor quality of life. It is associated with significantly higher hospitalization rates (36.9 vs. 22.5 percent) and higher estimated annual costs of care ($1.7 million vs. $192,000) compared to people with cancer who don't experience this type of pain.6 It can diminish every aspect of life. People with unrelieved breakthrough cancer pain have reported anxiety, depression, loss of appetite, trouble sleeping, trouble carrying out daily activities, strain on personal relationships, and interference with their cancer care (e.g., adhering to treatment schedules, staying still during radiation therapy). Among respondents to a 2010 Harris Interactive survey of people living with cancer, commissioned by the American Pain Foundation: o 83 percent said that breakthrough pain affects their desire to participate in certain activities. o 76 percent said that breakthrough pain affects their ability to perform everyday household chores. o 73 percent said that breakthrough pain wakes them from deep sleep at least once a month. o 52 percent said their health care providers tell them that breakthrough pain is a normal side effect of cancer or treatment. o 28 percent said they try to discuss breakthrough pain and pain management, but their provider does not seem interested. APF hosts roundtable on cancer pain at Beth Israel in New York City with renowned faculty and 11 other nationally recognized organizations Power Over Pain Action Network becomes the American Pain Foundation Action Network APF hosts fifth advocacy summit in Minnesota Is Fibro the Cause? pilot project launches in Missouri Is Fibro the Cause? A Toolkit for People Living With Fibromyalgia 1-888-615-PAIN (7246) www.painfoundation.org Spotlight on Back Pain "Oh, My Aching Back!" -- online guide, downloadable tools and resources launch Spotlight on Back Pain Back Pain: Tips for Prevention & Self-Care There are many things you can do to help prevent or ease back pain, often in the comfort of your own home. Whether your pain is short-lived (acute) or lingers beyond the expected recovery period (chronic), it's helpful to know that there are steps you can take to help ease your suffering. Use the following checklists to help keep your back healthy and strong. On page 3, you will find space to write down what you are doing to help manage your back pain or prevent flare ups, as well as your goals for the future. Tips for Preventing Back Pain J Stay active and strengthen your "core" -- this includes your back, abs and pelvis. J Maintain a healthy weight. Extra pounds -- and more inches around your waistline -- can put added strain on your back. J Sleep smarter. It's best to sleep on your side and make sure that your mattress is supportive and comfortable to your back. J Have good posture. Focus on keeping your ears, shoulders and hips in a straight line, hold your head up and tuck in your stomach. J Quit smoking. Smokers are 30% more likely to suffer from back pain. Smoking is thought to decrease blood circulation, interfere with nutrients getting to the lower spine and is linked to unhealthy behaviors like being less physically fit. J Make your work space back friendly. Don't sit hunched over your desk for hours on end without any breaks to stretch and move. Get a well designed chair and computer station, and try not to suddenly or awkwardly bend and twist your spine. J Learn to lift. Lifting or pulling heavy objects the wrong way is one of the easiest ways to hurt your back. Bend with your knees, engage your core muscles and lift with your legs while holding the object close to your body. Push, don't pull. Better yet, get someone to help you. J Do your best to avoid injury/accidents. For example, always wear your seatbelt, use a helmet when you ride a bike or motorcycle and don't be a weekend warrior. Know your limits. J Wear flat, comfortable and supportive shoes. J Get enough calcium and vitamin D every day. 1 14 R E V I E W JULY AUGUST SEPTEMBER OCTOBER NOVEMBER DECEMBER Pain Awareness Month PainSAFE launches APF Board of Directors adopts strategic plan for 20112016; APF mission is modified. APF's survey on physicians' perspectives toward prescription opioid abuse and misuse discussed on "Good Morning America" health segment APF hosts scientific meeting in Bethesda, Md, Seeking Solutions: Advancing Our Understanding of the Safe Use of Acetaminophen New and improved web site unveiled APF staff and volunteers provide testimony before FDA on REMS Second issue of Pain Research & Practice Update is released Media action alert issued about the unbalanced pain article in Newsweek APF releases its position statement on access to pain care A semi-annual publication of the American Pain Foundation Summer 2010 SCIENTIFIC MEETING SHOWCASES LATEST PAIN RESEARCH AND CHALLENGES IN ERA OF HEALTH CARE REFORM In February, pain management professionals gathered for the 26th annual meeting of The American Academy of Pain Medicine (AAPM) in San Antonio, TX. The conference highlighted the latest clinical research related to three areas of pain medicine: interventional techniques, practice management and patient-focused care. The theme of this year's meeting, Advancing Science and Practice of Pain Medicine in a Changing Healthcare Environment, provided timely information for practitioners grappling with the changing realities of their field. New federal guidelines for pain care, training for implantable devices, the proper use of opioids and medical-legal issues were among the hot topics discussed during the four-day event "We wanted to design it so that participants could use this [conference] as a very specific learning tool to get better at what they normally do or as a broad review to get better as an overall pain physician," said Timothy Deer, MD, conference co-chair and CEO and president of the Center for Pain Relief in Charleston, WV. Pre-conference sessions covered the latest advances in interventional therapies, such as neuromodulation, stimulation of the nervous system, spinal interventions and advanced surgical techniques. Interventional therapies were featured because that area progresses so rapidly, Dr. Deer noted. of pain as a disease process in an of itself, not just a symptom or a warning system that something is wrong in the body. With ongoing pain, pain signals remain active. Over time, this heightened response may: o Harm the nerves, blood vessels and organs o Suppress immune function o Result in excessive inflammation o Delay healing "This conference reflects one of the most important principles of caring for pain: Treat early and treat aggressively. Evidence continues to emerge -- from the research lab to clinical practice -- that the severity and persistence of pain can be modified through early intervention," said Will Rowe, chief executive officer of the American Pain Foundation, who also attended the meeting. "Treating pain early and aggressively can prevent some of the longterm and severe consequences of the failure to treat. In our daily work to improve pain care in this country, we think it's important to remind people that all approaches to treating pain have risks, including the failure to treat it." Science is beginning to uncover why chronic pain sets in and potential triggers or injury to the nervous system that allows pain to persist. VITAMIN D & CHRONIC PAIN Page 4 PAIN RESEARCH HIGHLIGHTS Medications are hard to recall Migraines up risk of stroke Chronic pain after breast cancer surgery Page 6 RESEARCHER PROFILE Investigating CB2 Receptors in the Spinal Cord Page 8 RESEARCH IN BRIEF Page 9-10 CDC & ARTHRITIS FOUNDATION FOCUS ON OSTEOARTHRITIS Page 12 Pain: A Disease Unto Itself A recurring theme across many presentations and panel discussions was the ever-increasing recognition and appreciation Snapshot of noteworthy studies Pain medicine has evolved from a medication-centered practice to a specialty with a well-stocked armamentarium -- a diverse array of pharmaceutical, surgical, continued on page 2 15 F I N A N C I A l I N F O r M AT I O N The American Pain Foundation is a 501(c)(3) non-profit organization. APF is proud to offer an array of programs and services to help those living with pain and their families, as well as the health care community serving them. Such efforts would not be possible without the generous support from private companies, individual contributions and foundation grants. 2010 Income (Unaudited) 2010 Expenses (Unaudited) 6% 6% 6% 5% Industry Income Other Industry 35% NIPC/ Endo 53% 89% ? ? ? ? Products and Services Foundation Income Industry Income Individual and Other ? Program Expenses ? Administrative Expenses ? Fundraising Expenses Income $ % Products and Services 20,684 near 0% Foundation Income 297,000 6% Industry Income National Initiative on Pain Control (NIPC)/ Endo 2,664,408 53% Other Industry 1,751,891 35% Individual and Other 285,972 6% Total 5,019,955 100% Expenses Program Expenses Administrative Expenses Fundraising Expenses Total $ 4,272,450 235,481 270,800 4,778,731 % 89% 5% 6% 100% 16 2 0 1 0 D O N O r H O N O r r O l l With this honor roll, the American Pain Foundation gratefully acknowledges and proudly celebrates the generosity and support of members, corporate partners, foundations and friends. This is a list of our treasured donors who made gifts that were received between January 1, 2010, and December 31, 2010. INDIVIDUALS $1,000 and above Anonymous James R. Borynack Micke A. Brown, RN, BSN James N. Campbell, MD and Regina Anderson, MD Malene Smith Davis, MBA, MSN, RN, CHPN Perry and Susan Fine Kimberly A. Fisher Scott M. Fishman, MD Rollin M. Gallagher, MD, MPH Eliot L. Gardner, PhD Michael J. Hanewich Peter Hurwitz John Lapolla Anton Levy Nancy McGoon William and Joanne Moeller Ruth Morris, MD, and Doug Gourlay, MD, FRCPC, FASAM Russell Portenoy, MD B. Todd Sitzman, MD, MPH Tamara Sloan, MSW $500 - 999 Albert and Julie Alden Gloria Anderson Joyce Brown, DO, MPH Charles Cleeland, PhD Yvette Col?n, PhD, ACSW, BCD Lenore C. Cooney Michael DeVito Nancy E. Falk, MD Daniel A. Goetz John D. Goetz, Esq. Lois Goetz Dr. and Mrs. Martin Grabois Christopher and Cynthia Hart Leanne Hughes Laurie A. Kabins, MD Deborah Merritt Sheila and Thomas Moore Rebecca Novak Tibbitt Neal Phillips Greg and Sharon Prestel Will Rowe Robert Rudolph Edward Twomey Paul and Jo Weiner Dana Weinstein $250 - 499 James Barrett Mary Bennett, MFA Ramsin Benyamin, MD Aric Blom, PA, PAC George "Butch" Boyle Myra J. and Truman E. Christopher Denise A. Coleman Timothy Conner, MD Ann Corley Jane Dvorak Mr. and Mrs. Edwin Eisen Justine Eisen Lee Erlendson, MD Aaron M. Gilson, PhD, MS, MSSW Malcolm P. Herman, Esq. Victoria R. Hoffman, BS, RN Desiree Hollandsworth Rod J. Hughes, PhD William D. Kea J. Martin Lebowitz, MD John Lee, MD John Ojea, MD Jeffrey A. Rabin Ben Rich and Kathleen Mills William S. Rosenberg, MD Faith E. Shepard Martin and Rosalind Stark Duane W. Swager II David Tanner, DO Terrence Terifay Pavan Yerramsetty, MD Lonnie Zeltzer, MD $100 - 249 Susan Abell Karen Adelstein Mohamed Salem Almarri Alfred V. Anderson, MD Cela Archambault Robin Armstrong-Arntz Gray E. Basnight Kevin Berk Karen J. Berkley, PhD William Blau, MD, PhD Theodore C. Bloch Annette Bostwick M. Shannon Burke, MD Alexis Taylor Bushman William and Daisy Bushman Nicole Cara Gilbert D. Carpel Linda Coats-Huber Bob and Capi Cohen Steven Cohen, MD Sean T. Collins Don Corley Amanda Crowe, MA, MPH Terence Daly Anita and Flora D'Angio Michael DeBoe, Jr. James and Jeannine Doane Larry C. Driver, MD Richard S. Eckman Joann M. Eland, PhD Tammy Elizondo Lois A. Elliott Richard Falls, MD, and Joan Falls Rosemary Farr J. Kay Felt Marc and Judy Fink Judy and Jan Finkel Sandra Foster Helen Freemyer Michael Gallagher Wendy Gartenberg Kimberly Gill R. Jeffrey Goldsmith, MD H. Don Gordon Bertha Burrell-Greene Anthony Guarino, MD James A. Guest, JD Shelley Gutstein Adam Haas, MD Benjamin Haas Kathryn Hahn, PharmD Mary Hall Jane Harbison Nina Hawker John Heidt Robert Hergenrother and Kimberly Brown Gina Herr Keela Herr, PhD, RN, FAAN, AGSF Ira Hersh Judy Illes Ken and Phyllis Jacobs Homer and Ellen Jett Roman D. Jovey, MD David A. Kaplan Ronald John Karpick, MD Melinda M. Kleehamer Milburn Lane Annabelle Lee Chuck and Hannah Lefton Henry Leidel Matthew Lewis John D. Loeser, MD Joyce H. Lowinson, MD Wendy Luedke Michael Mahoney III Roger R. Markwald, PhD Connie Martin Alice Mead, JD Elaine Metlin Susan E. Miller Loretta Mulligan Richard J. Nassau Sue Noll, RN-BC, CHPN Richard and Jacqueline North Steven D. Passik, PhD Patricia Patten-Hoge, RN, PhD Nicholas and Mary Ann Penning Julia Perkins Steven P. Phillips Janine Polley, RN, RYT Donald and Susan Poretz Mona Potter Natalie Powers, PharmD Sylvia J. Razzo Sally Allen Riddle Anita K. Rock Arthur Rullo Catherine F. Ryan Michael G. Santillo Noreen Sawitzky Terri Scadron William K. Schmidt, PhD Gary J. Schwartz Diana Shineman Kathy Elizabeth Smith Vayden F. Stanley, MD Howard Stein and Nance Cunningham, PhD Betsy Summer Lois Taylor Louise Tigner Anne R. Tirone Aleksandr Vakhlis Mary Vargas, Esq. Sridhar V. Vasudevan, MD Martin Wall Lisa Ward Lynn Webster, MD Bonnie T. Weissfeld Paula White Bonnie B. Wilford D.C. Williams Rosalie Wilson Steve Yarris, PsyD Stefanie Yurus Joseph Zaryski David and Rochelle Zohn Kathleen Zwack $1- 99 Angela Abner Kerri Adair Ralph Adams Joanne Addison Chad Adkins Susan Hayes Affholter, MPH Randye Ager Dana R. Akins Helen Alden George Aldous Brenda Allen Penelope Allen Mary Ellen Altieri Ron Amundson Carl and Leslie Anderson Philip and Jacoba Andrews Joyce Angell Sarah E. Apollony Christiane Aprile Joseph Aquilino William Archambault, Jr. Charles E. Argoff, MD William Atkinson Joanne Aughey Lisa Avery Robert Baker David Barker Katherine Barnett Kitty Barnett Michael Barrier Annette Baumker Seymour and Rozelle Bederman Carol and Howard Bell Martha Benedict Ulric Berard Jane Bergquist Abe Bernstein Julie Betts L. Betzer John Birdwhistle 17 Maralee Birge Laurie and Jeff Biskowitz Ellen Blackwell Lucille Blais Danielle Blanck Kathy Blandford Frieda Borders Kenneth L. Borieo Lynn Marie Bos Rosita Bosier Judith Botamer Ed Bowen Alison Bowles Brenda Bowman Carolyn J. Bowman Bill Bradford Staci Braga Deanne Brand Bob Breiding Diana Brooks Diane Brown Judith K. Brown Larrell Brown Thomas Brown Jill Brownback Amanda B. Buchholz Maggie Buckley Mike Buckley Chitra Budhu Doug Bugbee Stephanie Nicole Bunch Deborah Bush Joan C. Bush Eileen Caird Miriam H. Calvey Anne R. Campbell Bernadette Cannon Carl P. Cardey Amy Carmona John Carpenter, Jr. Walter and Maria Carter Dana Castagnetta John Catrett Karen Chapman Maria Chianta Pansie Chin-Loi Ronald Christensen Michelina Cioffi John Casey Clark, Sr. Kathryn Clark Alice Clearfield Ken Cliburn Karen Coffran Kathleen Cohen Neal Cohen Marc Collier Claude Collins Lucille Colson 18 June M. Conner Andrea Cooper Celeste Cooper Linda Cooper Mike Cooper Lisa Corwin John Cossey Michael and Rachel Costanza Bronwyn Cowell Annette Coy Mari Cragun Charles and Tina Crawford Judy Cross Janice E. Dallas Lynn D'Anna Hanna Dannenbring Robert and Hiroko Davidow Robert A. Davis Sanders W. Davis, MD Elaine DeCarlo Laurene DeConto Daniel Dekker Lucinda M. Demarais Eva Dennison Michael and Bonnie DeVito Gail Dezube Robin Di Georgio Sharon Dibble Edward Diggs Carol Dinn Irene Dixon Mary C. Docteur Holly Doherty Wynelle Dollar Mark Dominey Sandra L. Doud Kathleen M. Driscoll Donna A. Earles, MN, APRN, BC Glenn Einspahr Erika Eisman Evy Ellis Thomas M. Elzinga, Jr. Norm Enfield Clayton Englar Jonathan Epstein Allison Estes David J. Fenech Andrea Ferrara Maria Ferrell Cathy Ferrigno Lucas Ferris Debra Files Anne Finnegan Meredith Fiori Diana Fletcher Leonore Foehrenbach Paul Forbes Peggy Lynn Ford Eleanor Fordyce Lorraine Forrer Maxine Foster Vera L. Foust Diana M. Fox Adeline Frank Nancy Frank Robert S. Frankel, MD Sharon Frasco Dennis Frederick Samuel G. Fredman Margaret H. Freydberg Roy Fridkin Marie Galletti Denise Gambone Judy Gannon Stacy Gause Sheryl M. Gelman Gary Gill, PhD Betty Gilman James Giustino Rick and Debbe Gladstone Deborah Glasser Marie T. Glow Laurie M. Goldberg Michael Goldberg Mark Goldfield and Mary Hatch Frank Goldstein Debra Bystrom Gordon, RN, MS, FAAN Lorna Goshman RPh Marion Green Nancy S. Greenfield Caroline Grierson, RN, BSN, CBT John Griffin Kay E. Grim Matthew Gromet Mildred C. Gronlund Reesa Grossman Victoria Grove Thomas A. Guith, Jr. Jeannette Gunn Thomas Gurley Christine Gutierrez Laura Habighorst, RN, CAPA Ray Haines Jill Halkin Michael Halliburton Charles Hamlett Shirlene Hanson James Harms Alexandra Harrington Pam Hartman Kathleen Hawkins Stephanie Heitmeyer Deborah Henderson Joyce V. Hendrickson Marguerite W. Hennessy William Henry Darlene Hiler Laura Hinkle Elaine Hinman-Sweeney Carolyn Hoefelmeyer RayNice Hoffman Michael Holohan Mary R. Honeycutt Virginia L. Hoover Diane M. Horneman, MSN, CRNP Gordon L. Howe Marian Hubbard Barbara Huff Denise Hunter-Tuminello Stacey Huxtable Flonell Ingram Toby Isaacs Robert E. Jackson, MD Jennifer Jacobsen Cynthia Jaedike Carol Elisa James Claudia L. Janeshek Janice Jennings Martin Johnson Herman Joseph Martin and Elizabeth Kaback Noreen Kane Thomas Kane David Kannerstein, PhD Mary L. Karr Sonja Kasche Vera J. Katz George Kaufman Diane Keil Kimberly Kenberg Cheryl Kendall Robert E. Kendezejeski Peg Keohane Marcia Kerchner, PhD Charles Kerns Charles King Cathy Kinnett Edwin W. Kitzes Lauren Kleinfeldt Barbara Koepke Jody B. Kohn, MSW, MA Marcia Kolovich Delores Komar Christine Kovac Susan S. Krasner, PhD Priscilla Kreger Sally Koch Kubetin Peggy Kurts Keith Kuster Carl V. LaGrotteria Gregory Lamb Fred Landau DeLoris Lange David Lanter, MD, and Arlene Lanter Patricia Lantz Lillian Leps Beulah Levy James Lewis Lila Lewis Judith B. Liebman John P. Light Ana Linares Eleanor and Richard Linde George Liss, MD Patricia Lobo Jill D. Lopes Dorothy Stratman Lucey, RN, MSN, CS, PNP David Macintyre Ann Mandelbaum Edward Manougian, MD Barbara Marley-Cass Suzanne Marques, PharmD Linda Martin Debra Massey Lawrence and Dimitra Matika Cynthia McConnell Lauren J. McCormack David and Ellen McDermott Marvella McDill Sharon McElhaney Janet McInturff Bobbie Jo McLeod Joseph R. Meerschaert, MD Joan Meilach Stephen W. Melton Susan Meltzer Manuel Mendez Pamela J. Merriam Andrea Meyers Frank Miceli Pamela Miller Penny Mindham Amy Moebius Daya P. Mohan Donna Monius Norval H. Monsen Allen J. Montecino, Jr. Rhonda Moore Candace M. Morris Pamela M. Morris Kathy L. Mosier Harry Mozen Maureen Muck Margo Murphy Edward Muzyczka Elizabeth Nass Barbara Neidhardt Pat Neustadt Crystal E. Newcomer Jeanne Newman Suzanne W. Nielsen Gene H. Novak Frank Nowicki Carolyn J. Nuth Linda Obrecht Shari O'Brien Daniel O'Connor Patrick O'Hagan John Onanian Leesa K. Ordaz Mary Osborn Shirley Ostroot Wendy Paley Richard Palma Mary B. Panetta Billye J. Parks Tina Partlow Michael Patti Sharon Pavnica Deborah Paxton Nancy Pearce Arnold Peckerman Connie Peirson Stephen Perkins Robert Peters Toby Phillips Holly Pidone John Pietropaoli Josephine Pilla Liana Poirier Arlene Porter Terry and Kathy Prater Tod Prouty Sharon Puckett Howard L. Rachlin John R. Rado Scott Rainville Linda Rapoza Tina Regester Patricia B. Reinhart James Remer Ena Rhoden Fred Ringel D. Lynn Roberts Teresa Rodgers Maribel Rodriguez Cindie Lou Roger, MSN, RN Joanne Rogers Florice Roper Elizabeth G. Rose Richard J. Roseburg Mary Rosell, APRN, BC MA Teresa Roth Pamala Rud Mary Ruggiero, RN, MA William Ruhs Mark Rushing Lynn A. Russell David Saccomandi Marilyn Sacrestano Jean Sager Nadine Sahaydak Nancy Samen Charles and Erma Sarahan Anastasia Sauer Sandra Lee Schafer, RN, MN, AOCN Pearl Andrea Schwartz Alice Faye Scoller Robin Selby, LCSW Justin Semeck Mary Sestok John Shafer, CRNA Peggy Sheren Bobby and Lynne Silverstein Tom and Sally Simon Ellen Sims Emily Sloan Grace Smith Harry and Lenore Smith James E. Smith Joan Smith Patricia Smith Susan P. Sonski Donna Sorci Sandra Specht Sharon M. Spicer Jill Spolan Odette M. Stahl Marilyn Stamps Marsha Stanton, PhD, RN Laura Steele Cindy Steinberg Nancy S. Steinberg Patricia Stofer Mary Anne Stone Janet Strecher Andrea Summers Robert Surkey Rebecca Swoverland Norma Jean Talley Marc Tardiff Dave R. Thomas Lora Thomas John Thompson Bruce and Linda Thomson Barbara Thropp Karen Tillett Carol K. Triplett Donna Tucker April H. Vallerand, PhD, RN Valerie L. Valoppi Sylvia Varnam Nick and Rebeccal Vlisides Larry Wade Donna Wakeham Teresa Walden Barbara Wall Russell B. Walther Delores I. Watkins Susan M. Webber Gioia A. Weber Rafael Wecchio Robert Weinberg Nichole Weir Janet White Kenneth White William J. Whitener Bryan Wicks Diana Wilden Joan B. Wilentz, MA, BA Robert Wilk Peggy Wilkins Mardell Williams Corey Wishon Angela Wolf Ruby Wood Judith Wright Donna Wyrick John Yarbrough Patricia Youngson Kathleen Zaplitny Linda Ziman Steven Zimmet, MD Phyllis Stetson Zions Kim Zumkehr Marilyn Zutz CORPORATIONS and FOUNDATIONS/TRUSTS Visionary (greater than $1 million) Endo Pharmaceuticals, Inc. Curatio CME Institute LLC Eli Lilly and Company Lance Armstrong Foundation Mattson Jack Group, Inc. Merck & Co., Inc. New York Methodist Hospital New York University Ortho/PriCara, Division of OrthoMcNeil-Janssen Pharmaceuticals, Inc. St. Jude Medical Southeast Anesthesiology Consultants, PA William and Joanne Moeller Foundation Ally ($1 - $249) Abbott Employee Giving Campaign American Express Charitable Fund Ameriprise Financial Dick's Foreign Car Service Goldman, Sachs & Co. Matching Gift Program Harry S. Rosenthal Trust Impact Health Communications, LLC Maslansky Luntz & Partners LLC Mayo Regional Hospital Pioneer Hi-Bred International, Inc. Randall's Automotive Inc. Reddinger, Will, Gallagher & Dickert, LLC SageWorks Sisters of Holy Cross The Sharon A. McElhaney Trust Train Your Brain United Backcare, Inc. The Vlisides Company Champion ($100,000 to $499,999) King Pharmaceuticals McNeil - PPC, Inc. Medtronic Medtronic Foundation Pfizer Inc. Purdue Pharma L.P. Patron ($50,000 to $99,999) Cephalon, Inc. Forest Laboratories, Inc. Neuromodulation Therapy Access Coalition Contributor ($500-$999) Locke Lord Bissell & Liddell Lois A. Goetz Revocable Living Trust Recro Pharma The Sollar Foundation Supporter ($1,000 to $49,999) Abbott Laboratories Asante Communications LLC Boston Scientific Burness Communications Coralie H. Sloan Trust Friend ($250 - $499) American Academy of Pain Medicine Center for Spiritual Living, Santa Cruz Doris and Martin Hoffman Family Foundation Jeffrey A. Rabin & Associates, LTD 19 M E M O r I A l S & H O N O r g I F T S A gift to the American Pain Foundation is the perfect way to pay tribute to the memory of a friend or loved one, or to honor the special occasion, helpfulness, work, or love of someone you know. When you make a special memorial or honor gift to APF, a tasteful card is sent to the individual you indicate. Below is a list of memorial and honor gifts received between January 1, 2010, and December 31, 2010. The donor is listed below the individual being memorialized or honored. In Memory Of Shana Angell Joyce Angell James Archbold Cathy Ferrigno Ellery B. Birge Maralee Birge Gerard Blais Lucille Blais Sisters of Holy Cross William Buckley Helen Alden Gloria Anderson Stefanie Yurus David Bybel Donna Wyrick Pat Cannon Louise Tigner Judi Chamberlin Cindy Steinberg Kimberly Dreher Cohen Bob and Capi Cohen Wayman Cunningham Florice Roper Alfred V. D'Angio III Anita and Flora D'Angio Joe Daughtery Marc Collier Andy Douglass Ellen Sims Dennis Dvorak Jane Dvorak Bob Elliott Louise Tigner Sofie Englehardt Lois Goetz Judith McMahon Feagin Maureen Muck Wilbert E. Fordyce Eleanor Fordyce Sadie L. Francis John Yarbrough Daniel A. Goetz Judy and Jan Finkel 20 Lois Goetz H. Don Gordon Christine Kovac Ana Linares Reddinger, Will, Gallagher & Dickert, LLC Harry and Lenore Smith Duane W. Swager II Susan Green Jody B. Kohn, MSW, MA Judith Heit Karen Adelstein American Academy of Pain Medicine Sarah E. Apollony Charles E. Argoff, MD James Barrett Ulric Berard Kevin Berk Laurie and Jeff Biskowitz Lynn Marie Bos Deanne Brand Judith K. Brown John Carpenter, Jr. John Casey Clark, Sr. Neal Cohen Michael and Rachel Costanza Charles and Tina Crawford Robert A. Davis Gail Dezube James and Jeannine Doane Tammy Elizondo Jonathan Epstein Nancy E. Falk, MD Richard Falls, MD, and Joan Falls Marc and Judy Fink Sandra Foster Robert S. Frankel, MD Rollin M. Gallagher, MD, MPH Eliot L. Gardner, PhD Sheryl M. Gelman Rick and Debbe Gladstone Laurie M. Goldberg Frank Goldstein Matthew Gromet Mildred C. Gronlund Reesa Grossman Adam Haas, MD Benjamin Haas Christopher and Cynthia Hart Rod J. Hughes, PhD Toby Isaacs Ken and Phyllis Jacobs Jennifer Jacobsen Herman Joseph Roman D. Jovey, MD Martin and Elizabeth Kaback David A. Kaplan Ronald John Karpick, MD William D. Kea Marcia Kerchner, PhD Sally Koch Kubetin Fred Landau Milburn Lane David Lanter, MD, and Arlene Lanter J. Martin Lebowitz, MD Annabelle Lee Chuck and Hannah Lefton Anton Levy Beulah Levy Lila Lewis Eleanor and Richard Linde Locke Lord Bissell & Liddell Michael Mahoney III Ann Mandelbaum Debra Massey Mayo Regional Hospital David and Ellen McDermott Elaine Metlin Susan E. Miller Ruth Morris, MD, and Doug Gourlay, MD, FRCPC, FASAM Richard J. Nassau Pat Neustadt Richard and Jacqueline North Steven D. Passik, PhD Nicholas and Mary Ann Penning Will and Theresa Rowe Donald and Susan Poretz Terri Scadron Gary J. Schwartz Pearl Andrea Schwartz Peggy Sheren Bobby and Lynne Silverstein Kathy Elizabeth Smith Jill Spolan Marilyn Stamps Marsha Stanton, PhD, RN Martin and Rosalind Stark Betsy Summer Norma Jean Talley Carol K. Triplett Edward Twomey Aleksandr Vakhlis Paul and Jo Weiner Bonnie B. Wilford Steven Zimmet, MD David and Rochelle Zohn Bruce Hunter Kimberly A. Fisher Ann Jaedike Terry and Kathy Prater Trent Karczmarczyk Mary L. Karr Roger G. Kelly Sharon Dibble Helen Lee William Ruhs Oliver Lochmann Howard Stein and Nance Cunningham, PhD Hazel H. McIlwain Chad Adkins Mona Rose Musgrove Vera J. Katz Virginia Peters Robert Peters Arnold Porter Arlene Porter Alejandro Sanchez Rendon Howard Stein and Nance Cunningham, PhD Sarah Rushing Mark Rushing Cristine Satterfield Charles and Erma Sarahan Coralie H. "Toddy" Sloan Her children: Christopher, Tamara, Emily and Caleb John Dwight Smith Howard Stein and Nance Cunningham, PhD Frances Steinberg Gilbert D. Carpel Robert and Hiroko Davidow Ira Hersh Mr. & Mrs. Edwin Eisen Justine Eisen Barbara Wall Juanita Stofer Patricia Stofer Diane Tait DeLoris Lange Jos. A. Tosolt Marie T. Glow Alice A. Visser Philip and Jacoba Andrews Kent Weaver Julie Betts Jack Womack Howard Stein and Nance Cunningham, PhD Gary Zwack Kathleen Zwack In Honor Of Michael Andary, MD Sheila and Thomas Moore Tomasz Andrejuk Linda Martin In honor of APF and myself and fighting RSD for 18 long years Loretta Mulligan Erin Boulton M. Shannon Burke, MD Charles Bowles Alison Bowles Betty Brown Lorna Goshman, RPh Jim Buckley Maggie Buckley Maggie Buckley Walter and Maria Carter Stefanie Yurus Kathleen Bunnel Bobbie Jo McLeod Amy Carmona Paul Forbes Carolyn Abramowitz Samuel G. Fredman Kristy Catrett John Catrett Laurie Chira Denise A. Coleman Clinton Clark Cynthia McConnell Jennifer Clary Patricia Smith Sandee Cliburn Ken Cliburn Andrea Cooper Mike Cooper Don Corley Ann Corley Jon Corley Ann Corley Kathleen Corley Ann Corley David Cowan Staci Braga Ailene Davis Sanders W. Davis, MD Bill De Freitas Marian Hubbard Joseph DeConto Laurene DeConto Ernest B. Ellis Evy Ellis Margaret Ensell Diana M. Fox Meredith Fiori Noreen Kane Jan Gaffney Shirlene Hanson Linda Garcia Diana M. Fox Tommy Gresham Allison Estes Shirley Gurley Thomas Gurley Larry Guss Sr. Nancy Samen Stephen Haire Joanne Rogers In honor of Haiti's pain and suffering Judy Cross Carol Hamlett Charles Hamlett Michael J. Hanewich Julia Perkins Seal Harkin Louise Tigner Grantor Trust Howard Heit, MD, FACP, FASAM R. Jeffrey Goldsmith, MD Jeanette Hines Miriam H. Calvey Ann Jaedike Stephanie Nicole Bunch Ann Jaedike Cynthia Jaedike Helen Juelsgaard Ann Corley Noreen Kane Meredith Fiori Charles Katz Linda Martin Carolyn Kendall Cheryl Kendall Kristin Kenny Andrea Ferrara Christy R. Kimball Joyce V. Hendrickson Linda Kinelski Kimberly Kenberg Audra Kinner Linda Martin Mary Kleehamer Melinda M. Kleehamer Bruce Koppel Denise A. Coleman Judy Leclerc Diana M. Fox Barry Lobovits Linda Martin Danielle Marschall Linda Coats-Huber Jeanette Meerschaert Joseph R. Meerschaert, MD Christine Miaskowski, RN, PhD, FAAN Sandra Lee Schafer, RN, MN, AOCN Maureen Miner, MD Carl and Leslie Anderson Danielle Muscara Christiane Aprile Carolyn J. Nuth Lisa Ward David Ostroot Shirley Ostroot Barbara L. Park Jeanne Newman Kara Paugh Brenda Allen Steve Penoyer Leesa K. Ordaz Meredith Perkins Stephen Perkins Debra Pompadur Seymour and Rozelle Bederman Killian Rojas Denise A. Coleman Lou and Jen Rojas Denise A. Coleman Joy Rosenberg William S. Rosenberg, MD Stephen Ross, MD Diana Wilden Will Rowe, Mary Bennett and the Team Larry C. Driver, MD Rick Russell Lynn A. Russell Ellen Smith Lawrence and Dimitra Matika James Squire, MD Kerri Adair APF Staff Yvette Col?n, PhD, ACSW, BCD Cindy Steinberg Mike Buckley Scott Rainville Joyce Stewart Allison Estes Douglas Summers Andrea Summers Lee Sweeney Elaine Hinman-Sweeney Mary Vargas, Esq. Dana Weinstein Marilyn Waddoups Barbara Huff Erin Watson, MD Janet McInturff Lisa D. Weiss, MPH Gray E. Basnight Gloria Yearta Allison Estes FOUND AN ERROR? PLEASE LET US KNOW! Every effort has been made to accurately list all donors who made contributions to the American Pain Foundation between January 1, 2010, and December 31, 2010. If your name is misspelled, omitted, or incorrectly listed, please accept our sincerest apology. We hope you will contact us so corrections can be made in future publications. If you have questions, please contact: Michael W. DeVito Director of Philanthropy American Pain Foundation 201 N. Charles Street, Suite 710 Baltimore, MD 21201-4111 Voice: (410) 783-7292 x 305 Fax: (410) 385-1832 mdevito@painfoundation.org 21 A P F S TA F F Will Rowe Chief Executive Officer Mary Bennett, MFA Director of Grassroots Advocacy Elin Bj?rling, PhD Action Network Manager, Western Region and WA State Policy Specialist Rosita Bosier Pain Information Assistant Micke Brown, RN, BSN Director of Communications Yvette Col?n, PhD, ACSW, BCD Director of Education and Support Ann Corley Action Network Program Manager, Central and East Regions Michael W. DeVito Director of Philanthropy Lois Elliott Pain Information Assistant Samantha Libby-Cap Director, PainSAFE Program Jennifer Lobb Website Managing Editor Derek McGinnis Military/Veterans Amputee Program Advocate Randy Mowen Database Manager Carolyn Noel Webmaster and Special Projects Coordinator Carolyn Nuth Pain Information Center Manager Tina Regester Communications Manager Tamara Sloan, MSW Director of Strategic Development Mayssa Sultan, MPA, Lac Action Network Program Manager, Western Region and Policy Specialist Lisa Ward Web Communications Specialist Bonnie Weissfeld Assistant to the CEO and Office Administrator The work APF staff accomplishes would not be possible without the steadfast dedication of its volunteers, consultants and alliances. 22 A P F B O A r D O F D I r E C T O r S Scott M. Fishman, MD APF President and Chair University of California Davis Medical Center Mary Vargas, JD APF Vice Chair Stein & Vargas, LLP APF Pain Community Advisory Council Martin Grabois, MD APF Secretary Baylor College of Medicine Maggie Buckley APF Treasurer Ehlers-Danlos National Foundation APF Pain Community Advisory Council James R. Borynack Wally Findlay Galleries International, Inc. Myra Christopher Center for Practical Bioethics Charles Cleeland, PhD University of Texas M.D. Anderson Cancer Center Perry G. Fine, MD University of Utah School of Medicine Rollin McCulloch Gallagher, MD, MPH Philadelphia Veterans Affairs Medical Center University of Pennsylvania School of Medicine Aaron M. Gilson, MS, MSSW, PhD Pain & Policy Studies Group Michael J. Hanewich Silicon Valley Bank Malcolm P. Herman, JD APF Pain Community Advisory Council, Co-Chair Russell Portenoy, MD Beth Israel Medical Center Ben A. Rich, JD, PhD University of California Davis Health System Malene Smith Davis, MBA, MSN, RN, CHPN Capital Hospice Cindy Steinberg APF Pain Community Advisory Council, Co-Chair Lisa D. Weiss, MPH Cooney Waters Group Lonnie Zeltzer, MD Mattel Children's Hospital at UCLA David Geffen School of Medicine at UCLA James N. Campbell, MD Chair Emeritus Johns Hopkins University Medical Center 23 PA I N CO MMUN I Ty A DV I S O ry C O U NC I l ( PC AC ) Serving as ambassadors to APF and spokespeople for people with pain, the Pain Community Advisory Council (PCAC) provides guidance and advisement to APF's Board of Directors, chief executive officer and staff to ensure that APF's programs, actions and positions are guided by the experiences of people affected by pain. PCAC's individual and collective expertise brings the voices of people with pain and caregivers to the forefront of the decision-making process. Maggie Buckley Glenda Dykstra Malcolm Herman Rachel Lozano Mark Maginn Lynn Sanders Cindy Steinberg Mary Vargas Excerpts from PCAC member Mary Vargas's Keynote Speech during the 2010 Action Network Advocacy Summit ...In early 2000, I found APF through the Internet and within a few days of hearing the name American Pain Foundation for the very first time, I was standing in a Congressional briefing, once again telling my story. But something incredible happened. I told my story and they listened and they looked in my eyes and they cried... ...That day was a beginning for me -- the first time I understood that even though I had pain, I still had the power to enact change... ...10 years for me -- for some of you a lifetime. We have looked for the groundswell, we have waited for the cry of indignation that could not be silenced, we have gathered our courage and we have dared to dream of a world where we are not ruled by pain. And I know it and feel it and believe it that now is our moment. I see it in the work that you do even on bad days. I see it in your commitment to travel despite the physical toll. I see it in the outrage you carry boiling just beneath the surface. Now is the moment we will not take it anymore. In this room we have the potential to draw the line in the sand, to find our collective voice. 24 Amewmn Pam Fozzmifztzon A Unlted VOICG of Hope and Power over Paln Amerman Pam Foundat|on 20| North Charles Street Su|te Ba|t|more 4| I I