PAINADVOCACY COMMUNITY AN E-NEWSLETTER CONNECTING HEALTHCARE PROFESSIONALS WHO CARE June 2003 Volume 03-11 WELCOME BACK TO PAIN ADVOCACY COMMUNITY: An E-Newsletter Connecting Healthcare Professionals Who Care. Thank you for all your comments. The next two issues will focus on Advocacy- Why Get Involved? We would like to feature upcoming events related to regulations or legislations, so help us help you. If you would like us to invite others to participate in or collaborate on your upcoming projects, make others aware of resources that may be helpful to their constituents, or acknowledge a job well done, please e-mail us at email@example.com. Feel free to share this newsletter with other concerned healthcare professionals or organizations. TOPICS FOR JUNE 2003: The Many Faces of Pain - Featured Dr. Regina Benjamin, Dr. Dan Doleys and Dr. Rodney O. Tucker On the Horizon – The National Hospice and Palliative Care Organization (NHPCO) Calls for Proposals In the Spotlight – The Patient Advocate Foundation Hosts Patient Congress IV Chatter – RSDSA Announces Creation of Slide Presentation on Diagnosis and Treatment Options of RSD/CRPS Families USA Report Cites Major Concerns on Size and Census of Uninsured Population Tips from Advocacy Tool Kit – Why Become An Advocate for Proper Pain Management? Why Get Involved? Where to Start Caregiver’s Bookbag- NHPCO Offers Education and Training Curriculum for Pediatric Palliative Care WebResources The Bucks Box – The National Institute of Neurological Disorders and Stroke (NINDS) is Accepting Applications for Research In Treatment of Certain Chronic Conditions, including Pain Click here if you wish to be removed from the E-newsletter list Links provided in this newsletter are sites not associated, affiliated or controlled by Purdue and Purdue takes no responsibility for the content of those sites. THEMANYFACESOFPAIN The Many Faces of Pain Consumer Program Featured Dr. Regina Benjamin, Dr. Dan Doleys, and Dr. Rodney O. Tucker On Thursday, June 19, 2003, a consumer program was held at the University of Alabama to help individuals learn how to control their pain. There were three featured speakers, who were: Dr. Regina Benjamin, Associate Dean for Rural Health at the University of South Alabama College of Medicine, First African-American and First Female President of the Medical Association for the State of Alabama, Dr. Dan Doleys, Ph.D. director of The Pain and Rehabilitation Clinic for Birmingham, and Dr. Rodney O. Tucker, M.D., Associate Professor University of Alabama at Birmingham Center for Palliative Care. Other speakers included: Actor Corbin Bernsen, best known as tough talking lawyer Arne Becker on “LA Law”. This consumer program took place at the Alys Stephens Center, in Birmingham, and included a reception and a viewing of “The Many Faces of Pain” photo exhibit. ONTHEHORIZON The National Hospice and Palliative Care Organization (NHPCO) Calls for Proposals NHPCO is calling on all of its members to submit proposals for presentations for the 5th Clinical Team Conference and Exposition on Hospice and Palliative Care. The theme of the conference and exposition is: Fostering Excellence: Individual and Team Leadership and Growth. The conference will be held in Las Vegas, Nevada on March 23-25, 2004. The deadline for submission of proposals is: July 14, 2003. Each presenter will have an opportunity to increase their visibility as an end-of-life care leader and to contribute to the advancement of the [hospice and palliative care] field. For additional information, log on to www.nhpco.org and then click on 5th Clinical Team Conference Call for Proposals. INTHESPOTLIGHT The Patient Advocate Foundation (PAF) hosts Patient Congress On June 4-6, 2003, The Patient Advocate Foundation hosted its Patient Congress IV, entitled “Together Everyone Achieves More.” During the congress, PAF honored many congressional and newspaper individuals who had been instrumental in helping patients struggling with cancer related issues. Among the congressional honorees were Senator Tom Harkin, Representative Steve Israel, Representative Lincoln Diaz-Balart, and Senator Hillary Rodham Clinton. The Patient Congress covered current health policy issues, cancer topics, and how to be a better patient advocate. PAF is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. The Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability. For more information, log on to www.patientadvocate.org. CHATTER Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA) Announces Creation of Slide Presentation On: Diagnosis and Treatment Options of RSD/CRPS RSDSA, with the assistance of Dr. Srinivasa N. Raja, co-chair of the RSDSA scientific advisory committee and Director of Pain Research at Johns Hopkins University School of Medicine, has created a slide presentation on the Diagnosis and Treatment Options of RSD/CRPS. The slide kit is available for download on the RSDSA website at www.rsds.org. Note: To view and utilize the slides, you must have Microsoft PowerPoint. Families USA Report Cites Major Concerns on Size and Census of Uninsured Population Families USA prepared a report for Cover the Uninsured Week (CTUW) that was released by The Robert Wood Johnson Foundation as part of the kickoff for CTUW. The Families USA report, based on Census Bureau data, found that 74.7 million Americans under 65 years of age - almost one out of three (30.1 percent) - were uninsured at some point during 2001-2002. Almost two-thirds (65 percent) of these uninsured people were without health coverage for at least six months, and nearly one-quarter (24 percent) were uninsured throughout the two-year period. The following is the statement of Ron Pollack, executive director of Families USA, concerning the report: "The findings in this report should represent a sea change in the way we think about the uninsured. Now that almost one out of three non-elderly Americans experienced significant periods without health insurance, the uninsured problem is no longer simply an issue of altruism about other people, but it is also one of self-interest for us all. As the 75 million who were uninsured over the past two years reflect, working families are increasingly at risk of becoming uninsured - whether due to a pink slip from a job, unaffordable cost increases, or cutbacks in employer and public health coverage.” "With large and growing portions of the U.S. population becoming uninsured, we are moving towards a political tipping point that will require real and meaningful action to expand health coverage.” The report is available on the Families USA web site at www.familiesusa.org. Click on Uninsured and then click on the Article: “Going Without Health Insurance.” Families USA is the national organization for health care consumers. It is nonprofit and nonpartisan and advocates for high-quality, affordable health care for all Americans. TIPSFROMADVOCACYTOOLKIT Why Become An Advocate for Proper Pain Management? Why Get Involved? According to the American Pain Foundation, an estimated 50 million Americans suffer from persistent pain annually. The spectrum of people with persistent pain ranges from patients with life-limiting diseases, including those with advanced malignancies, to patients with conditions where chronic pain commonly occurs – including osteoarthritis, other joint and spinal degenerative disorders, postherpetic neuralgia, diabetic neuropathy, post-stroke central pain, and many more common conditions. When we have the means to address this pain – and are not doing so effectively – this number is absolutely unacceptable. There is still a great deal of work to be done, despite the efforts to raise awareness and the provision of standards to measure pain as the 5th vital sign. Where to Start Start by developing key messages. By developing key communication messages and staying “on message”, you focus your communication effort. The following message track encompasses a broad pain management platform. Use these messages as a guide for your outreach, or as a starting point for developing your own. Pain management is a public health crisis brought on by improper assessment, inadequate, inappropriate, or non-existent treatment, cultural factors, and personal bias. ▼ An estimated 50 million Americans suffer from persistent pain each year, according to the American Pain Foundation. ▼ Patients have the right to appropriate assessment and treatment of pain because pain CAN be managed effectively. ▼ Pain management treatment needs to be individualized, as no one treatment is right for every person or diagnosis. The healthcare professional and patient team need to evaluate the many available options and together determine what is appropriate. CAREGIVERBOOKBAG NHPCO Offers Education and Training Curriculum for Pediatric Palliative Care The Education and Training Curriculum for Pediatric Palliative Care contents are designed to be relevant to the needs of many, varied populations of health care professionals and others who work with or wish to work with children or adolescents who are diagnosed as having, living with, or dying from a life- threatening condition. The Curriculum guide’s goals for healthcare professionals are to: Obtain specialized knowledge Acquire specific skills Become aware of their own personal feelings and thoughts about death, dying and bereavement Develop attitudes that will enable them to provide quality care during a very significant period in the life of a child or adolescent and his or her family. There are four main parts of the curriculum and they address the following: Principles of pediatric palliative care and their implementation Care of Children and adolescents with life-threatening conditions Care of family members and significant others both before and after a death Issues involving health care providers, the interdisciplinary team, and the community For more information, log on to www.nhpco.org, then select NHPCO’s Marketplace, and then search for Pediatric Palliative Care. WEBRESOURCES 1. Right to pain management (lists of resources explaining a patient’s rights) Joint Commission on Accreditation of Healthcare Organization (JCAHO) Phone: 630-792-5000 Web: www.jcaho.org The introduction of the JCAHO standards on pain management was the result of a two-year collaborative effort between the Joint Commission and the University of Wisconsin Medical School. The standards set requirements for the assessment and management of pain in accredited hospitals and other health care settings. American Pain Foundation Phone: 888-615-PAIN or 1-888-615-7246 Web: www.painfoundation.org APF is an independent, nonprofit information, education and advocacy organization serving people with pain. For complete statement of your rights for pain care, visit the APF website and click on Pain Care Bill of Rights. 2. Finding a pain specialist or pain clinic. Here are several websites with searchable lists of pain specialists and clinics. American Pain Foundation has a searchable database on its website under Finding Support. Phone: 888--615-PAIN or 1-888-615-7246 Web: www.painfoundation.org American Academy of Pain Management has a searchable database of medical facilities that have passed the American Academy of Pain Management’s Pain Program Accreditation testing and on- site inspection. Phone: 209-533-9744 Web: www.aapainmanage.org Pain.com has a searchable list of pain specialists and pain clinics all over the globe. Each of the specialists and/or clinics is listed in postal code order with the complete mailing address. Web: www.pain.com/painclinics 3. Support groups (lists of organizations that provide information on support groups for people with pain and for those who care for them) American Chronic Pain Association Phone: 800-533-3231 Web: www.theacpa.org Organization offering support and information for patients with chronic pain, their families and support groups. The National Foundation for the Treatment of Pain Phone: 831-655-8812 Web: www.paincare.org Organization dedicated to providing support for patients who are suffering from intractable pain, their families, friends and the physicians who treat them. Caregiver Support Family Caregiver Alliance Phone: 415-434-3388 Web: www.caregiver.org Information resource on long-term care. Friends’ Health Connection Phone: 800-48-FRIEND (800-483-7436) Web: www.48friend.org Nonprofit support network that connects people with similar health problems for the purpose of mutual support. National Family Caregivers Association Phone: 800-896-3650 Web: www.nfcacares.org NFCA is a grass roots organization created to educate, support, empower and speak up for those who care for chronically ill, aged or disabled loved ones. Well Spouse Foundation (WSF) Phone: 800-838-0879 Web: www.wellspouse.org WSF is an association of spousal caregivers. 4. Opportunities for involvement on pain management issues American Alliance of Cancer Pain Initiatives Phone: 608-265-4013 Web: www.aacpi.org AACPI is a national organization dedicated to promoting cancer pain relief nationwide by supporting the efforts of state and regional Pain Initiatives. The AACPI provides national leadership and advocacy for the Initiative movement, recommends program direction, supports Initiative growth and development, facilitates regular communication among Initiatives, fosters collaborations with other organizations, and organizes an annual national meeting. American Chronic Pain Association Phone: 800-533-3231 Web: www.theacpa.org ACPA is an organization dedicated to facilitating peer support and education for individuals with chronic pain and their families. It also strives to raise awareness among the health care community, policy makers, and the public at large about issues of living with chronic pain. American Pain Foundation Phone: 888--615-PAIN or 1-888-615-7246 Web: www.painfoundation.org APF was founded in 1997 and serves people with pain through information, education and advocacy. Its mission is to improve the quality of life for people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management. THEBUCKSBOX The National Institute of Neurological Disorders and Stroke (NINDS) Has Available Funds The NINDS organization invites applications for research programs designed to advance our understanding of the neurobiological mechanisms and epidemiology of Complex Regional Pain Syndrome (CRPS)/ Reflex Sympathetic Dystrophy (RSD). Applications are accepted from institutions with the following characteristics: For profit or non-profit organizations Public or private institutions, such as universities, colleges, hospitals, and laboratories Units of State and Local government Eligible agencies of the Federal government Domestic or foreign For additional information, log on to www.ninds.nih.gov. . Edited by: Pamela P. Bennett, BSN, RN Senior Director, Advocacy Joan Zooper, BA, JD Senior Manager, Advocacy Purdue Pharma L.P. 2003 Purdue Pharma L.P.