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Testimony on National Institute on Deafness and Other Communication Disorders' FY 1998 Budget by Dr. James B. Snow, Jr.
Director, National Institute on Deafness and Other Communication Disorders
National Institutes of Health
Accompanied by
Dr. Donald H. Luecke, Deputy Director, NIDCD
Mr. W. David Kerr, Executive Officer, NIDCD
Ms. Patience T. Sparks, Budget Officer, NIDCD
Interpreter, NIDCD
Dr. Harold Varmus, Director, NIH
Mr. Dennis P. Williams, Deputy Assistant Secretary, Budget, DHHS

U.S. Department of Health and Human Services

Before the House Appropriations Committee, Subcommittee on Labor, Health and Human Services, Education and Related Agencies
February 27, 1997

Mr. Chairman and Members of the Committee, I am grateful to have this opportunity to appear before you to report on the research progress of the National Institute on Deafness and Other Communication Disorders (NIDCD) that benefits 46 million Americans who are challenged by diseases and disorders affecting hearing, balance, smell, taste, voice, speech or language.

The progress we are experiencing within the portfolios of the NIDCD is due to careful planning and accelerating discovery. Our scientists are studying the disorders of human communication in revolutionary ways. Seven years ago, when I first appeared before the Committee, I made a commitment that I would encourage the development and expansion of the use of molecular biology to uncover important information on how human communication systems work. With extramural expert advice to increase the extramural portfolio of the NIDCD in molecular biology, molecular genetics, imaging and integrative neuroscience, with a rigorously updated NIDCD National Strategic Research Plan, and with the addition of an outstanding molecular biologist as the Director of Intramural Research, we are seeing the results in new understandings of the mechanisms involved in human communication.

Until the establishment of NIDCD in 1988, only two genes responsible for hereditary hearing impairment had been located. In the past several years, with the support of NIDCD and through NIDCD-supported international consortia designed for the rapid exchange of information, a multitude of genes for syndromic and nonsyndromic forms of hearing impairment, including autosomal dominant and recessive, X-linked and mitochondrial modes of transmission have been located in specific regions of the human genome. Presently, at least 12 different genes on 10 different chromosomes have been located for various forms of autosomal dominant nonsyndromic hearing impairment and at least 11 different genes on as many different chromosomes have been identified for autosomal recessive nonsyndromic hearing impairment. The NIDCD has created an opportunity to accelerate discovery of the specific genes involved in hearing impairment using inbred mouse strains, sample sequencing and a cDNA library enriched for cochlear-specific cDNAs. This information will ultimately aid in the earliest identification of hearing impairment in infants. As these discoveries continue to be made, the NIDCD has started a new effort to identify the underlying mechanisms of hereditary hearing impairment based on functional analyses of the discovered genes.

During the early years of the NIDCD, investigators demonstrated that there is a "window of opportunity" for acquiring sign language just as there is for children acquiring spoken language and that they are parallel. Recent NIDCD-supported research studied manual and vocal babbling in deaf and hearing children. This research will further our understanding of normative patterns of motor development in all children and provide a more detailed understanding of the acquisition of sign languages in deaf children.

NIDCD has also taken a leadership role in the improvement of clinical research efforts in human communication. The Institute has established two clinical trial cooperative groups with an estimated 15 to 20 clinical facilities in each group. These facilities have clinical research experience and capability. The clinical trial cooperative groups represent a five-year commitment for the initiation and conduct of clinical trials. They will plan, implement, conduct, analyze, and disseminate results of priority research in the efficacy of treatment of diseases and disorders affecting human communication. This approach promises effective and efficient use of resources and expedited delivery of research findings to the public.

The NIDCD is committed to improving technology for individuals with communication disorders. Hearing aids continue to be the principal form of remediation for most individuals with hearing loss. Although 28 million Americans have hearing impairment, only about 20% of them have hearing aids. NIDCD with the Department of Veterans Affairs (VA) supports an innovative collaboration to promote hearing aid research and development. The first hearing aid clinical trial began in the spring of 1996. It will determine which commonly used hearing aid circuits benefit which subgroups of hearing-impaired individuals and under what circumstances.

Another important collaboration aimed at improving hearing aids, is a joint effort of the NIDCD, the National Aeronautics and Space Administration (NASA) and the VA. Beginning with a search of Federal laboratories for new technologies that might be applicable to improving hearing aids, this collaboration is designed to foster the formation and support of partnerships among scientists, industry and Federal laboratories to carry out research needed for the commercialization of technologies that could benefit those who use or could use hearing aids.

Computer and electronics industries are developing new and improved diagnostic and rehabilitative tools for individuals with hearing impairment. For example, scientists participating in the NIDCD Small Business Innovation Research (SBIR) program are developing a cost-effective and user-friendly listening system designed to interface with existing airplane sound systems. This will allow individuals with hearing aids to receive pilot and flight attendant announcements that include safety instructions, as well as to communicate with neighboring passengers. A collaboration with a major airline is currently in place. In yet another effort, better tools for infant hearing screening and diagnostic testing continue to be developed as many hospitals implement universal infant hearing screening programs.

There is continuing progress in the testing of conjugate pneumococcal vaccines against otitis media in infants and small children. Last year I reported to the Committee that we had a new preventive strategy against the nontypeable Haemophilus influenzae (NTHi). NIDCD intramural scientists have successfully prepared a detoxified lipooligosaccharide (dLOS)-based conjugate antigen from NTHi. This conjugate antigen induces a bactericidal humoral immune response in two animal species and reduces the incidence of otitis media in the only reliable animal model of otitis media, making it a promising vaccine candidate. Plans are underway to initiate a Stage I clinical trial of this vaccine in the NIH Clinical Center. I am delighted to announce that in cooperation with the NICHD, an announcement for commercial development of the vaccine has just been published. As the NTHi genome has recently been sequenced, this new knowledge will facilitate understanding of the pathogenesis of NTHi otitis media and ultimately accelerate the development of other vaccines against NTHi otitis media. Additionally, the Otitis Media Vaccine Unit in the NIDCD is beginning work on a candidate vaccine against M. catarrhalis otitis media.

Chronic otitis media (OM) in children causes hearing loss, is responsible for major health care costs, and is a risk factor for delaying the acquisition of language. In the general population, many risk factors for OM have been identified, but their applicability in populations such as Native American children, with a higher incidence of otitis media, is not known. Studying OM risk factors in a population with a high incidence of this disease could elucidate the role of certain risk factors in both majority and minority populations. A NIDCD-funded investigator is currently working with mothers on the White Earth Reservation to examine risk factors for OM in Native American children. The protocol includes hearing screening and tympanometry for the Native American children. Results to date suggest a high rate of chronic OM in this group (approaching 50%), with half of the affected children exhibiting an associated hearing loss.

NIDCD scientists are comparing mechanisms underlying apoptosis or cell death with mechanisms of plasticity to promote regeneration of sensory capabilities lost to disease. Cochlear hair cells that are lost are not naturally replaced, resulting in permanent hearing loss. Current research efforts have focused on the role of growth factors and other mitogens in promoting hair cell regeneration. This approach provides a new avenue for investigating mechanisms of hair cell regeneration and repair in mammalian systems and promises to accelerate the discovery of therapeutic agents for the prevention and treatment of sensorineural hearing loss and vestibular (balance) abnormalities.

Disorders of balance and vestibular function constitute a major health problem. Individuals who suffer from recurrent debilitating vertigo, dizziness, or imbalance are often unable to hold jobs and unable sometimes to get up in the morning and perform simple acts of daily living such as showering, eating, or driving. It is estimated that 12.5 million Americans over the age of 65 have dizziness or balance problems that significantly interfere with their lives, and many of these individuals have difficulty caring for themselves independently. To assess the functional skills of individuals with chronic balance problems of vestibular origin, a NIDCD-supported investigator has developed and validated a scale of independence in activities of daily living. The scale developed in this study provides clinicians who manage individuals with balance disorders with a useful tool to evaluate the outcomes of newly developed treatment.

The chemical senses (smell and taste) permit interaction with the environment in highly complex ways. Smell and taste greatly influence nutrition. Eating disorders comprise a rapidly growing group of medical problems. Many individuals are afflicted with eating disorders such as anorexia that can result in malnutrition, wasting, or even death. Scientists have found some surprising results regarding the effect of gustatory (or taste) thalamic lesions on behavior that challenge earlier concepts of how taste information is processed by the gustatory thalamus and what its role is in guiding eating behavior. These results suggest that the gustatory thalamus is not simply a relay station for transmitting primitive, consummatory aspects of gustatory information from the brainstem to higher cortical centers, but that it plays a more pivotal role in the learning and execution of more complex tasks. Work in progress includes the investigation of the role of the gustatory thalamus in the information-processing of conditioned food aversions and food-seeking behavior.

For the working adult who becomes suddenly deafened by illness or injury, there had in earlier times been no way to maintain his or her former life, but with the development and improvement of cochlear implants, the neural prostheses that work by providing direct electrical stimulation to the auditory nerve, many of these individuals can maintain their jobs, talk on the phone and interact more easily with families and friends.

NIDCD is especially proud of three efforts designed to support minority scientists underrepresented in the area of human communication research. All are in collaboration with the Office of Research in Minority Health (ORMH) and include the NIDCD/ORMH Minority Dissertation Research Grants in Human Communication and the NIDCD/ORMH Mentored Research Scientist Development Award for Minority School Faculty. The NIDCD/ORMH Partnership Program is a pilot collaboration between NIDCD and four academic institutions with large minority enrollments. The program, in its third year, develops curriculum materials and workshops and provides research training for students and faculty and research administration experience for faculty and administrators. Building on an idea of a human infrastructure, several hundred individuals have participated in the program at the universities or the NIDCD.

The scientists supported by the NIDCD are applying the newest tools and strategies to long misunderstood and often misdiagnosed diseases and disorders of human communication. The NIDCD is seizing opportunities to accelerate discovery that will lead to: elucidation of the biology of brain disorders such as aphasia; finding new approaches to pathogenesis in diseases including laryngeal carcinoma and spasmodic dysphonia; new treatment strategies against autoimmune inner ear disease; applying genetic medicine to hearing impairment and velo-cardio-facial syndrome, while developing new therapy for disorders of balance and the symptom of tinnitus that are critically important in improving the quality of life for those challenged with communication disorders.

Mr. Chairman, the FY 1998 budget request for NIDCD is $192,447,000. I will be pleased to answer any questions you might have.

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