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Patient Advocacy IOM Public Testimony: Committee on the Organizational Structure of the NIH, November 20, 2002 Katherine Morland Hammitt Member: Coalition of Skin Diseases, Women's Health Research Coalition, Arthritis Foundation Advocacy Network, Genetic Alliance, Patient Access Coalition, and National Coalition of Autoimmune Patient Groups My name is Katherine Morland Hammitt. I greatly appreciate the opportunity to testify. I'm here today as a Past President of the Sjögren's Syndrome Foundation and currently Interim Executive Director. I'm also here as Co-Chair of a patient coalition, the Advocates for Oral and Craniofacial Research, and, as an active member of six additional patient advocacy coalitions. Sjögren's syndrome involves an autoimmune attack on the exocrine (moisture-producing) glands, resulting in dry mouth and dry eye. So, two institutes are critical to research in Sjögren's: the National Institute for Dental and Craniofacial Research (NIDCR) and the National Eye Institute (NEI). A significant number of sufferers develop complications affecting mucus membranes throughout the body and resulting in multi-organ and multi-system involvement. In addition, the lymphoproliferative process in Sjögren's sets the stage for potential development of B-cell lymphoma. Sjögren's syndrome strikes as many as four million Americans, ninety percent of whom are women. Our coalition represents 32 non-profit patient groups, most of whose diseases cross the missions of many NIH institutes. Yet most of our help comes from a few of the smaller, independent ones, especially NIDCR. You would think we, of all people, would be the ones saying, "We're stretched all over the NIH campus! How do we get attention? How do we keep track of the research on our diseases?" I admit it's not always easy. Yet, we're here today to explain why certain institutes, as independent entities, are critical to the patients we represent. For example, much of oral health is systemic in nature and touches on many scientific areas. But the oral health specialist offers a unique approach, and it is one we cannot risk losing. Out of 27 NIH institutes and centers, 25 have an emphasis on medicine. Only one has an emphasis on dentistry and oral health. Without a specific granting agency, this area will be, at the very least, greatly weakened. We're asking you to keep smaller institutes such as NIDCR, NEI, and the National Institute for Arthritis and Musculoskeletal and Skin Disease (NIAMS) independent. We need them. Dry mouth - a devastating symptom of Sjögren's and common condition for as many as 25 million Americans - can lead to loss of teeth, and affect eating, swallowing, and digesting food. What does NIDCR do that is unique for those of us with Sjögren's? The salivary glands provide an excellent model because they can be excised and examined for the autoimmune process and the crossover from benign lymphoproliferation to one that is malignant. NIDCR has an intramural clinic which has gathered tissue and serum samples for 20 years on Sjögren's. At one time, the National Institute of Allergy and Infectious Diseases (NIAID) was pivotal in Sjögren's research and led by Tony Fauci, Norman Talal, Harry Moutsopoulos, and Stuart Kassan. However, these studies were dropped until NIDCR took them over. Now, NIDCR researchers conduct clinical studies, coordinating care and data with other institutes, such as NEI and NIAMS. They are making exciting progress in gene therapy. They're launching an international registry for Sjögren's that will greatly impact research into this disease. NIDCR leads the way scientifically, catalyzing engagement of other institutes and centers. Without NIDCR, vital research and a distinctive focus would be lost. NEI: Dry eye strikes approximately 10 million Americans and is a major symptom of Sjögren's. It affects sight and causes corneal ulceration and pain, diminishing quality of life. NEI looks at the autoimmune impact on the lacrimal glands and cornea. NEI has joined NIDCR to co-fund the International Research Registry on Sjögren's, an excellent example of institute collaboration. NIAMS: This institute focuses on the connective tissue aspects of autoimmune disease, including joint and muscle pain and skin manifestations, shared by many related diseases. One of our patient coalition groups works closely with NIAMS in these areas. The NIDCR Sjogren's Syndrome Clinic has provided valuable clinical training for NIAMS rheumatology Fellows, another example of institute collaboration. My second request is that you emphasize coordination among the institutes and support for the committees and offices that help multi-system diseases. For example, the Office of Research on Women's Health helps ensure that women's diseases receive attention and research is coordinated. The Autoimmune Diseases Coordinating Committee is making sure that researchers recognize and focus on the interrelation of these diseases. This is a feasible and flexible way to meet needs of multi-system diseases and change the ways we categorize disease. Third, we ask for increased opportunities for public participation and information exchange. The public needs a clear understanding of how priorities are set and funding is allocated. Finally, we need a greater emphasis on common goals to cut across institutes and increase the number of researchers. We must emphasize the increasing need to discover interrelated mechanisms in autoimmune and related diseases to provide new and exciting approaches for research. An approach by common pathology rather than disease or organ can be facilitated by cross-cutting offices. We can reorganize NIH in many ways. But the question is: would this truly result in better research? The smaller institutes cover areas that most likely would be neglected. NIDCR is critical to those diseases belonging to our coalition, from TMJ to Marfan's to Ectodermal Dysplasia to Sjögren's. NEI is critical to key aspects of Sjögren's. NIAMS is key for other aspects. The National Institutes of Health exists to improve the health of the American people. It would be a mistake to dissolve or absorb smaller institutes because the importance of their research focus, and the consequences for millions of patients affected by that research, are not realized. Thank you. The Sjögren's Syndrome Foundation (SSF), a not-for-profit organization, serves patients and the many people who support and treat them. Sjögren's syndrome is a serious autoimmune disease affecting 4 million Americans, ninety percent of whom are women. The Foundation's mission is to educate patients and their families about Sjögren's syndrome; increase public and healthcare provider awareness; and encourage research to find better treatments and, ultimately, a cure for this devastating disorder. Additional information on Sjögren's and the Foundation can be found at www.sjogrens.org |