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Volume 03-13.doc.doc

  1. 1. P A I N A D V O C A C Y C O M M U N I T Y July 2003 Volume 03-13 W E LC O M E B A C K TO PAIN ADVOCACY COMMUNITY: An E-Newsletter Connecting Healthcare Professionals Who Care. Thank you for all your comments. This issue will feature information on Musculoskeletal Diseases. 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 Feel free to share this newsletter with other concerned healthcare professionals or organizations. AN E-NEWSLETTER CONNECTING HEALTHCARE PROFESSIONALS WHO CARE  In the Spotlight –  National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)  National Institutes of Health Osteoporosis and Related Bone Diseases- National Resource Center (NIH ORBD-NRC)  On the Horizon –  The Mississippi Pain Society Schedules Annual Summer Meeting – July 25-26  CRPS/RSD Hope, Now and in the Future, October 7th Conference  Legislative Update –  Pain Legislation Introduced As Result of Collaborative Efforts of Many Pain Organizations  Chatter –  RSDSA Offers Two New Brochures  RSDSA Seeks Patient Stories  Tips from the Advocacy ToolKit –  Key Messages for Arthritis Sufferers  Key Messages for Temporomandibular Joint (TMJ) Dysfunction Sufferers  Caregiver’s Bookbag- RSDSA Announces New Book – Living With RSDS  WebResources- Selected NIAMS Coalition Members  The Bucks Box –  The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Provides Research Opportunities  Health and Human Services (HHS) Seeks Personal Assistant Proposals TOPICS FOR JULY 2003:
  2. 2. 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.
  3. 3. INTHESPOTLIGHT National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) National Institutes of Health Osteoporosis and Related Bone Diseases- National Resource Center (NIH ORBD-NRC) The NIH ORBD-NRC was established in 1994 with a grant from the NIH/National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) to the National Osteoporosis Foundation. Its mission is to provide patients, health professionals, and the public with an important link to resources and information on metabolic bone diseases, including osteoporosis, Paget's disease of the bone, osteogenesis imperfecta, and hyperparathyroidism. The Center is operated by the National Osteoporosis Foundation, in collaboration with The Paget Foundation and the Osteogenesis Imperfecta Foundation. For additional information, log on to ONTHEHORIZON The Mississippi Pain Society Schedules Annual Summer Meeting - July 24-25 The Mississippi Pain Society, a division of the Southern Pain Society, will hold its 4th Annual Summer Meeting, TOTAL BODY PAIN from July 25-26 in Biloxi, Mississippi. The conference is jointly sponsored by the Methodist Rehabilitation Center, The Mississippi Pain Society, and the Department of Mental Health. Continuing education credit will be provided. The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) supports basic, clinical, and epidemiologic research, research training, and information programs on diseases of joints, muscles, bones and skin. Most of these diseases are chronic and many cause life-long pain, disability, or disfigurement; they afflict millions of Americans; cause tremendous human suffering; and cost the United States economy billions of dollars in health care and lost productivity. These diseases affect people of all ages, racial and ethnic populations, and economic groups -- almost every household in America is affected in some way by one or more of these diseases. Diseases that the NIAMS organization focus on include: Arthritis, Autoimmune Diseases, Carpal Tunnel Syndrome, Osteoporosis, Lyme Disease and Pain. For additional information, log on to
  4. 4. The program will review the diagnosis and treatment of whole body pain. Evaluation and treatment of patients with whole body pain will be presented from physical medicine, behavioral medicine, interventional medicine, and alternative medicine perspectives. In addition, a special session on cancer pain will be presented. CRPS/RSD Hope, Now and In The Future, October 7th Conference The RSDS Awareness Coalition and the Reflex Sympathetic Dystrophy Association of America (RSDSA) will co-sponsor a full day conference in Northumberland, Pennsylvania on October 7, 2003, at the Front Street Station. The conference is for physicians, medical professionals, RSD patients and any interested parties. CME credits for doctors, nurses, and physical therapists are being developed and should be available through The Office of Continuing Medical Education of the Geisinger Health System. For additional information, log on to LEGISLATIVEUPDATE Pain Legislation Introduced As Result of Collaborative Efforts of Many Pain Organizations Congressman Mike Rogers (R-MI) introduced H.R. 1863, the National Pain Care Policy Act of 2003 in the House of Representatives. The bill is a step toward gaining federal recognition of the importance of pain as a critical and unanswered health care problem in our nation. Over the past eighteen months, the American Pain Foundation (APF) has been working collaboratively with the Pain Care Coalition (PCC) to develop a comprehensive pain care bill. Representative Rogers’ bill incorporates many of the APF and PCC positions and reflects many of the suggestions that APF and PCC have collected over time from conversations with numerous groups representing health care providers, consumers, disease-specific organizations and others. To view the latest available version of H.R. 1863, go to and enter "HR 1863" in the search field.
  5. 5. CHATTER The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) Offers Two New Brochures Helping Children/Youth With RSD/CRPS Succeed in School provides information about what parents can do, how classrooms can be modified and stress reduced for children/youth with Reflex Sympathetic Dystrophy Syndrome (RSDS). This brochure is available free at the RSDSA website. For additional information, log on to Treating Complex Regional Pain Syndrome: A Guide for Therapy is a brochure written by Melanie E. Swan, OTR/L, Occupational Therapist and Resource Clinician at the Rehabilitation Institute of Chicago’s Chronic Pain CareCenter and Center for Spine, Sports, and Occupational Rehabilitation. For additional information, log on to RSDSA Seeks Patient Stories RSDSA is seeking individual stories from patients with RSD/CRPS who have experience (both positive and negative) with emergency departments or individual emergency physicians. The goal is "to humanize patients with chronic pain for emergency physicians who only see them in times of need." In addition to submitting your story, it would be helpful if you would include background information on yourself, including your profession or role in the community, in order to highlight your individuality. Physicians with RSD/CRPS would be particularly pertinent to this project. To participate, please send a synopsis of your experience to Jim Broatch, Executive Director of RSDSA at TIPSFROMTHEADVOCACYTOOLKIT Key Messages for Arthritis1 • Despite the recent advances in pain management, many people with arthritis experience levels of acute and chronic pain that affect their ability to function and reduce their quality of life. • The fatigue, weakness, and stiffness that can accompany pain in people with arthritis also contribute to decreased quality of life. • Despite receiving appropriate treatment for the underlying disease, many people experience pain that impairs physical and psychological function. The goals of optimal care for people with osteoarthritis and rheumatoid arthritis are to determine what can be done to slow or correct the underlying disorder and to identify pain as an issue to be addressed as soon as the disease is diagnosed.2
  6. 6. Important Facts for Arthritis3 • More than 100 forms of arthritis exist, with rheumatoid arthritis and osteoarthritis the most prevalent forms. • More than 33 million Americans have arthritis – 28 million of them are over the age of 45 • Arthritis is more prevalent among women than men • More people in the South have had arthritis than in any other region.4 • By 2020, researchers project that 60 million in the United States will be affected by arthritis.5 • Osteoarthritis is the most common form of arthritis, its prevalence increasing with age: as much as 80 percent of the population over 75 years old show radiologic signs of the condition.6 Key Messages for Temporomandibular Joint (TMJ) Dysfunction7 • TMJ diseases and disorders refer to a complex and poorly understood set of conditions, manifested by pain in the area of the jaw and associated muscles and limitations in the ability to make the normal movements of speech, facial expression, eating, chewing, and swallowing. Conditions that routinely affect other joints in the body, such as arthritis and trauma, also affect the TM joint (TMJ). • Pain from TMJ can be mild to severe, temporary to chronic. • TMJ is a legitimate cause of pain – and for sufferers, the pain is very real. CAREGIVERBOOKBAG The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) Announces New Book Living with RSDS is a thoughtful, comprehensive look at RSD/CRPS. Co-authored by a patient and a physician, both of whom serve on the RSDSA Board of Directors, this new book features sections on diagnosis, treatment, pediatric RSD/CRPS, living in a “well” world and much more! For additional information, log on to
  7. 7. WEBRESOURCES Selected National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Coalition Members8 This E-Newsletter will highlight those coalition members who are primarily focused on arthritis and musculoskeletal conditions. Those coalition members who have a special focus on sports medicine and skin disease conditions will be highlighted in the next E-Newsletter, Volume 14. American Academy Of Orthopaedic Surgeons (AAOS) The academy is the professional society of bone and joint surgeons. It seeks to further knowledge in the diagnosis and treatment of bone-related diseases. P.O. Box 2058 Des Plains, IL 60017 Phone: 800-824-BONE (2663) Web site: American Association of Colleges of Osteopathic Medicine (AACOM) This association serves the administration, faculty, and students of the 19 member osteopathic medical schools. 5550 Friendship Blvd., Suite 310 Chevy Chase, MD 20815 Phone: 301-968-4100 Web site: American Autoimmune-Related Diseases Association, Inc. (AARDA) The association promotes a national focus and collaborative effort among volunteer groups that work with autoimmune-related diseases. It provides research grants and offers education programs, including seminars and workshops. 22100 Gratiot Ave.E. Detroit, MI 48021 Phone: 810-776-3900 Web site: American College of Rheumatology (ACR) This professional organization of rheumatologists (doctors specializing in arthritis and related conditions) and associated health professionals is involved in research, education, and patient care. It provides educational materials and guidelines, as well as referrals to rheumatologists and other health professionals. 1800 Century Place, Suite 250 Atlanta, GA 30345 Phone: 404-633-3777 Web site: American Juvenile Arthritis Organization (AJAO)
  8. 8. This organization of parents, health care professionals, and others interested in the problems of juvenile arthritis serves as an advocate for the needs of those with juvenile rheumatic diseases and related conditions. It is a council of the Arthritis Foundation. 1330 Peachtree Street Atlanta, GA 30309 Phone: 404-872-7100 or toll free: 800-283-7800 Web site: (see “About Us”) American Society for Bone and Mineral Research (ASBMR) This is a professional medical/scientific society established to bring together clinical and experimental scientists involved in the study of bone and mineral metabolism. 1200 19th Street, NW, Suite 800 Washington, DC 20036-2422 Phone: 202-857-1161 Web site: Arthritis Foundation The Arthritis Foundation is the main voluntary organization devoted to the more than 100 forms of arthritis and related conditions. The foundation publishes pamphlets, a magazine and provides up-to-date information on such items as research and treatment, nutrition, and alternative therapies. Chapters nationwide offer exercise programs, classes, support groups, physician referral services, and free literature. 1330 West Peachtree Street Atlanta, GA 30309 Phone: 404-872-7100 or toll free: 800-283-7800 Web site: Arthritis Foundation/Metropolitan Washington Chapter This is the Washington, D.C., area chapter of the Arthritis Foundation. 4455 Connecticut Avenue, NW, Suite 300 Washington, DC 20008 Phone: 202-537-6800 Web site: Association of Rheumatology Health Professionals (ARHP) This division of the American College of Rheumatology (ACR) is a professional association of nonphysician health care professionals who specialize in rheumatology. 1800 Century Place, Suite 250 Atlanta, GA 30345 Phone: 404-633-3777 Web site: Biophysical Society This is a professional organization of biophysicists, biochemists, and other scientists interested in the application of physical laws and techniques to the analysis of living phenomena. 9650 Rockville Pike
  9. 9. Bethesda, MD 20814 Phone: 301-530-7114 Web site: Ehlers-Danlos National Foundation (EDNF) The foundation serves people with or interested in Ehlers-Danlos syndrome (EDS) and medical professionals who treat EDS. It aids networking among members for communication and support and maintains a library of educational materials. 6399 Wilshire Blvd., Suite 200 Los Angeles, CA 90048 Phone: 323-651-3038 Fax: 323-651-1366 Web site: Facioscapulohumeral Society, Inc. This organization promotes scientific and clinical research on FSH muscular dystrophy (FSHD) through the education of the public, government bodies, and the medical profession. It collects and distributes information on FSHD and its cause and treatment, fosters communication among interested parties worldwide, helps organize support groups for people living with FSHD, and serves as a referral source for health professionals. 3 Westwood RoadLexington, MA 02420 Phone: 781-860-0501 Web site: Federation of American Societies for Experimental Biology (FASEB) This federation of scientific societies represents a variety of medical researchers and includes the American Physiological Society, the American Society for Biochemistry and Molecular Biology, the American Society for Pharmacology and Experimental Therapeutics, the American Society for Investigative Pathology, the American Institute of Nutrition, the American Association of Immunologists, the American Society for Cell Biology, the Biophysical Society, and the American Association of Anatomists. 9650 Rockville Pike Bethesda, MD 20814-3998 Phone: 301-571-0657 Web site: International Myeloma Foundation (IMF) The foundation sponsors research in multiple myeloma. 2129 Stanley Hills Dr. Los Angeles, CA 90046 Phone toll free: 800-452-2873 Web site: Lupus Foundation Of America (LFA) This is the main voluntary organization devoted to lupus. The LFA provides services to people with lupus, works to educate the public about lupus, and supports lupus research. Through a network of more than 500 branches and support groups, the chapters offer information and referral services, health fairs, newsletters, publications, seminars, support group meetings, hospital visits, and telephone help lines. Lupus Foundation of America, Inc. 2000 L Street, N.W., Suite 710
  10. 10. Washington, DC 20036 Phone: 202-349-1155 Fax: 202-349-1156 Web site: Lyme Disease Foundation (LDF) The foundation seeks to educate medical professionals and the public about Lyme disease. It provides treatment protocols, diagnostic guidelines, and photographic case histories. It assists in forming support groups, offers referral services, maintains a speakers bureau, sponsors medical seminars, and conducts research. The foundation maintains a registry of infected pregnant women and congenital cases. One Financial Plaza, 18th Floor Hartford, CT 06103 Phone: 860-525-2000 Web site: Myositis Association of America The mission of the Myositis Association of America is to improve the lives of those affected by inflammatory myopathies. They seek out persons with inflammatory myopathies, provide a support network, act as a resource for patients and the medical community, advocate for patients, and promote research into the causes and treatment of the diseases. 755 Cantrell Avenue, Suite C Harrisonberg, VA 22801 Phone: 540-433-7686 Fax: 540-432-0206 National Association of Orthopaedic Nurses This is an association of nurses involved or knowledgeable in orthopaedic nursing. It enhances the personal and professional growth of orthopaedic nurses through continuing education programs and promotes research development and advances in orthopaedic nursing. 401 Michigan Avenue, Suite 2200 Chicago, IL 60611 Phone: 800-289-6266 Fax: 312-527-6658 Web site: National Fibromyalgia Association This association is concerned with developing and executing programs dedicated to improving the quality of life for people with fibromyalgia by increasing the awareness of the public, the media, government, and the medical community. It makes the latest research and treatment information available to people with fibromyalgia, and it educates and motivates the medical community to provide faster diagnosis, better treatment, and more extensive research. 2200 N. Glassell Street, Suite A Orange, CA 92865 Phone: 714-921-0150 Web site: National Foundation For Ectodermal Dysplasias (NFED)
  11. 11. This is an association of people with ectodermal dysplasias and the medical community. It educates health care professionals in patient treatment, locates treatment facilities, and provides referral information. 410 East Main Street P.O. Box 114 Mascontah, IL 62258-0114 Phone: 618-566-2100 Web site: National Marfan Foundation (NMF) The foundation helps people who have Marfan syndrome and related connective tissue disorders. It provides information and materials about these disorders and how to seek appropriate care. 22 Manhasset Avenue Port Washington, NY 11050-2023 Phone: 516-883-8712 or toll free: 800-8-MARFAN Web site: National Organization For Rare Disorders (NORD) This organization serves as a clearinghouse for information about rare disorders. It monitors the Orphan Drug Act, links individuals for mutual support, encourages research on rare diseases, and encourages faster communication among voluntary organizations, health-related agencies, and government. It also provides information on rare disorders and refers patients to organizations that can assist them. P.O. Box 1968 Danbury, CT 06813-1968 Phone: 203-744-0100 or toll free: 800-999-6673 Web site: National Osteoporosis Foundation (NOF) The foundation is dedicated to reducing the widespread prevalence of osteoporosis. It seeks to increase public awareness, educate the public, provide information to people with osteoporosis and their families, educate medical professionals, advocate increased government support for research, and support biomedical research. 1232 22nd Street, NWWashington, DC 20037-1292 Phone: 202-223-2226 Web site: National Sjogren's Syndrome Association The association promotes public awareness of Sjogren's syndrome and encourages research into the cause and cure of the disorder. It also conducts educational and research programs. Web site: National Vulvodynia Association The association was created to improve the lives of women affected by vulvodynia. It encourages patient self-help, provides a support network, educates the public, encourages research into more effective treatment and eventual cure, and coordinates a central source of information on suspected causes, current treatments, and ongoing research.
  12. 12. Box 4491 Silver Spring, MD 20914 Phone: 301-299-0775 Web site: Orthopaedic Research Society (ORS) This is a society of orthopaedic surgeons and other investigators who are elected as active members on the basis of their previous scientific activity, their continued participation in the field of research, and their accomplishments in orthopaedic surgery. The society promotes orthopaedic research. 6300 River Road, Suite 727 Rosemont, IL 60018-4226 Phone toll free: 800-626-6726 Web site: Osteogenesis Imperfecta Foundation This is an organization of health professionals, people with osteogenisis imperfecta (OI), and parents of children with OI. It supports and encourages medical research into effective treatment of the disorder and seeks to educate people with OI, their families, and health care professionals. 804 West Diamond Ave., Suite 210 Gaithersburg, MD 20878 Phone: 301-947-0083 or toll free: 800-981-2663 Web site: The Paget Foundation This is an organization for people with Paget's disease of bone and doctors and other health care professionals who are interested in the disorder and in improving patient care. It conducts educational programs for people with Paget's disease of bone, health care professionals, and the public and refers patients to physicians who specialize in treating the disorder. 120 Wall Street, Suite 1602 New York, NY 10005 Phone: 212-509-5335 or toll free: 800-23-PAGET Web site: Parent Project Muscular Dystrophy (PPMD) The Parent Project Muscular Dystrophy mobilizes people in the United States and worldwide in a collaborative effort to enable people with Duchenne and Becker Muscular Dystrophy to survive, thrive and fully participate within their families and communities into adulthood and beyond. 1012 North University Blvd. Middletown, OH 45042 Phone: (513) 424-0696 or toll free (800) 714-KIDS Fax: (513) 425-9907 Web site: Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
  13. 13. This is an association for people with reflex sympathetic dystrophy syndrome (RSDS) and health care professionals who treat RSDS patients. It educates the public and the media and provides physician referrals. 116 Haddon Ave., Suite Haddonfield, NJ 08033 Phone: 856-795-8845 Web site: Scleroderma Foundation This voluntary organization publishes information on scleroderma. It also offers patient education seminars, support groups, physician referrals, and information hotlines. 12 Kent Way Suite 101 Byfield, MA 01922 Phone toll free: 800-722-4673 Fax: 978-463-5809 Web site: Scleroderma Research Foundation This voluntary organization is dedicated to research on scleroderma. It can provide a list of researchers who are studying scleroderma. In addition, the foundation provides general and technical information on scleroderma. 2320 Bath Street, Suite 315 Santa Barbara, CA 93105 Phone: 805-563-9133 or toll free: 800-441-CURE Web site: Sjogren's Syndrome Foundation, Inc. This organization is devoted to Sjogren's syndrome. It publishes free pamphlets and a newsletter for members that provides up-to-date information. It provides clinic and physician referrals. 8120 Woodmont Avenue, Suite 530 Bethesda, MD 20814-1437 Phone (local): 301-718-0300 Phone toll free: 800-475-6473 Fax: 301-718-0322 Web site: Spondylitis Association of America (SAA) The association is the main voluntary organization devoted to all forms of spondylitis. It publishes materials for patients and for health care professionals. P.O. Box 5872 Sherman Oaks, CA 91413 Phone toll free: 800-777-8189 Web site: THEBUCKSBOX The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Provides Research Opportunities NIAMS, a part of the National Institutes of Health (NIH), leads the Federal medical research effort in arthritis and musculoskeletal and skin diseases. The NIAMS supports research and research training throughout the United States, as well as on the NIH campus in Bethesda, MD, and disseminates health and research information. The National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse is a public service sponsored by the NIAMS that provides health information and information sources. Additional information can be found on the NIAMS Web site at If one is interested in applying for research funding through NIAMS, the research topics covered in the NIAMS 2000-2004 Strategic Plan are: o Arthritis and Other Rheumatic Diseases o Cartilage and Connective Tissue o Bone Biology and Bone Diseases o Orthopaedics o Muscle Biology o Skin Disease For each of the topics listed above, NIAMS provides research guidelines and additional directions on its web site. For example, some of the NIAMS research guidelines for arthritis and other rheumatic diseases includes: • Promoting research and testing of new therapeutic approaches for arthritis and other rheumatic diseases; • Developing effective means of preventing, delaying, or alleviating the complications of arthritis and other rheumatic diseases; • Supporting strategies to understand and reverse health disparities among ethnic minorities and women that are disproportionally affected by arthritis and other rheumatic diseases; • Developing new concepts to improve the efficiency of randomized controlled trials for rheumatic diseases. Trials of rare or relatively rare rheumatic diseases, where the outcomes are often endpoints that require prolonged observation, are usually very difficult to carry out. New designs are needed combined with new but rigorous statistical packages that will enable shorter trials involving fewer patients; and In addition to funding research on critical diseases, NIAMS also provides a listing of opportunities for patients to participate in research. The Patient Research Registries can be found on the NIAMS website at:, click Health Information and then under “Patient Research Registries. For additional information, log on to Health and Human Services (HHS) Seeks Personal Assistant Proposals HHS is gearing up to meet rising demand for personal assistants, as boomers age, in a new program. The program is called “Demonstration to Improve the Direct Service Community Workforce.” HHS Secretary Thompson announced that this program will fund seven to ten projects around the U.S. designed to develop and implement programs that will recruit and retain direct service workers. For additional information, log on to, then select All HHS News, then
  14. 14. Edited by: Pamela P. Bennett, BSN, RN Senior Director, Advocacy
  15. 15. Joan Zooper, BA, JD Senior Manager, Advocacy Beverly King, BA Administrative Editor, Advocacy Purdue Pharma L.P. © 2003 Purdue Pharma L.P.
  16. 16. 1 in the face of pain, Pain Advocacy Community ToolKit, Purdue Pharma L.P., 2003 2 American Pain Society, “Guideline for the Management of Pain in Osteoarthritis, Rheumatoid Arthritis, and Juvenile Chronic Arthritis,” 2002. 3 in the face of pain, Pain Advocacy Community ToolKit, Purdue Pharma L.P., 2003 4 National Center for Health Statistics, FASTATS web site: “Arthritis”, 5 Helmick CG, Lawrence RC, Pollard RA, et al. “Arthritis and other rheumatic conditions: who is affected now and will be affected later.” Arthritis Care and Research 1995:8:203-211. 6 Bijlsma JW. “Analgesia and the patient with osteoarthritis.” Am J Ther. 2002 May-Jun; 9(3): 189-97 7 in the face of pain, Pain Advocacy Community ToolKit, Purdue Pharma, L.P., 2003 8 National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), list revised as of June 3, 2003,