Coalition for Heritable Disorders of Connective Tissue



	April 25, 2003 The Honorable Ralph Regula House Committee on Appropriations Subcommittee on Labor-HHS 2358 Rayburn House Office Building Washington, D.C. 20515 Dear Mr. Chairman and Members of the Subcommittee: The Coalition of Heritable Disorders of Connective Tissue strongly urges the committee to significantly increase funding for three Department of Health and Human Services (DHHS) agencies: the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC) and the Health Resources Services Administration (HRSA). The Coalition of Heritable Disorders of Connective Tissue represents hundreds of thousands of individuals living with disorders that affect connective tissue, and we come to you as an alliance of dozens of disease support groups We ask the Committee to put funding in place that promotes biomedical research, population surveillance and public health studies and the translation of these findings into improved health services. We are thrilled that you have been champions of doubling the budget of the National Institutes of Health (NIH). This has already resulted in incredible advances in basic understandings of health and disease. The many disease support groups that the Coalition of Heritable Disorders of Connective Tissue represents report numerous discoveries leading to new hope for their members. Many of these discoveries will benefit individuals affected by other conditions, as well. For example, the gene associated with Hutchinson-Gilford Progeria will lead to important discoveries that will fight cancer and heart disease and help us understand the aging process. The Coalition of Heritable Disorders of Connective Tissue has seen first hand the benefit of NIH funding, appreciating the support of National Institute of Arthritis Musculoskeletal and Skin Diseases Institute for a workshop on connective tissue two years ago that led to an RFA this year, resulting in funding for eight new grants for work on connective tissue disorders. It is critical that the NIH budget be increased by 10% in order to keep these projects moving forward. It would be a tragedy for the millions of individuals we represent and for all Americans if research and applied clinical translations slowed now. The Coalition of Heritable Disorders of Connective Tissue supports increased funding for the National Institutes of Health, particularly the Office of Rare Diseases, the National Institute of Arthritis Musculoskeletal and Skin Diseases and the National Human Genome Research Institute. Since the translation of basic science into improved public health is the ultimate goal of all our national biomedical research pursuits, we also recommend increased funding for the Centers for Disease Control and Prevention, particularly the Office of Genomics and Disease Prevention. The ability to identify and link genes, genotypes and disease is critical, but it is difficult to use this information to improve health until robust surveillance and epidemiological information on a population basis are gathered. Progress in the translation of basic science to treatments and therapies will not happen without understanding the correlations between genotype and phenotype, the actual expression of the disease. We appreciate the need to understand the incidence and prevalence of diseases, the characteristics of those diseases, and the longitudinal progress of those diseases in various populations. We also understand the power of newborn screening and other population efforts in genetics. The CDC's Office of Genomics and Disease Prevention is severely under-funded and cannot fully utilize and respond to the huge amount of genetic information coming out of the fabulous efforts of the NIH. We ask, again this year, that you earmark two million dollars for the surveillance of genetic conditions by the Office of Genomics and Disease Prevention of CDC. There are already very well informed researchers ready with creative and cost-effective plans to do this essential work; they lack only funding. Two million dollars could fund pilot studies that will lead to the surveillance of all genetic disease and profoundly benefit the health of our nation. As a nation, we have begun to understand and support the need for basic research. However, we have not given as much consideration or funding support to the task of translating new scientific understandings into clinical applications and improved health services. The Coalition of Heritable Disorders of Connective Tissue has experienced first hand the effective and dedicated work of HRSA, particularly the Maternal and Child Health Bureau, Genetic Services Branch (MCHB/GSB). We also understand that this branch of the Department of Health and Human Services (DHHS) is particularly under-funded, and know that programs and services that are critical to the health of our members and citizens in general stand ready to be implemented, lacking only the necessary funds We ask, again this year, that you earmark two million dollars for the Genetic Services Branch of the Maternal and Child Health Bureau at HRSA. Numerous programs, such as the Genetic Literacy Project with the March of Dimes, Project Connect - a collaborative effort involving the genetics community and organizations like Family Voices and others, have made an impact and demonstrated that funding for MCHB/GSB programs can have significant impact in terms of translating science into health services. Many difficult decisions must be made as you designate how funds should be allocated to the many divisions of the US government. Please consider our recommendations. We are happy to provide abundant documentation to support our suggestions, should you desire it. Please feel free to contact us. Sincerely. Sharon F. Terry, MA President Priscilla Ciccariello President Emeritus

	Sharon Terry, MA, Co-President, Coalition For Heritable Disorders Of Connective Tissue 4301 Connecticut Avenue, NW, Suite 404, Washington DC 20008 Voice: 202-362-9599 Fax: 202-966-8553 E-mail: chdct@pxe.org Priscilla Ciccariello, Co-President Website: http://www.chdct.org Copyright 2003 © Coalition For Heritable Disorders Of Connective Tissue Revised June 16-2003