STATEMENT OF THE CHILDREN'S BRAIN DISEASES FOUNDATION

Summary of Recommendations

I am Doctor J. Alfred Rider. President of the Board of Trustees of the Children's Brain Diseases Foundation. It is a pleasure to submit testimony on behalf of the Foundation for inclusion in the Senate Appropriatons Committee, Labor-HIIS-Education Subcommittee hearing record.

I specifically address research for Batten disease. Batten disease is a neurological disorder affecting the brains of infants, children and adults. Batten disease occurs once in every 12.500 births. There are approximately 440.000 carriers of this disorder in the United States. It is the most common neurogenetic storage disease in children. Although there are several types of Batten disease, the usual case is characterized by intellectual deterioration, visual loss, behavioral changes, the onset of progressively severe seizures and terminates in death. This irreversibly severe illness constitutes an enormous nursing and financial burden to families with afflicted children. Patients may live, if that is the proper term, in this deteriorating state from 10 to 25 years, and in the case of my son, Charles, 43 years. However, he is now in a completely helpless state. The changes which occur in the brain in these children are quite similar to many of the changes which occur in the aging person. Thus, effective treatment for Batten disease may also allow us to alter the aging process of senility in all humans.

Although, the Children's Brain Diseases Foundation has been very successful in getting Batten disease to be recognized world wide, we have only been partially successful in advancing research to determine the cause of this disease.

Recent research points to a defective gene on the short arm of chromosome 16. It is now proposed to isolate the gene. This is a very labor intensive and expensive task. This process is facilitated by families organized to supply blood and tissues as sources of DNA for these studies. A tissue bank has been established at the University of Indiana with 100 cell lines available to all investigators. The process of systematically surveying a region of the chromosome containing millions of base pairs of DNA in which there may be hundreds of genes is underway. These studies may provide a new means of prenatal and pre-clinical diagnosis. Carrier detection will be possible when the disease gene and product have been identified (as is now possible in cystic fibrosis). The next step will be to identify the enzymatic defect. The recent announcement by the Institutional Biosafety Committee of the National Institutes of Health of the approval of a proposal to treat children with a severe genetic disease by inserting new genes into their blood cells, makes this research all the more germane.

We were very encouraged and happy with your committee's recommendation and final adoption in the Appropriations Bill of the following wording: "The Committee is not satisfied with the pace of research in Batten's disease. Batten's disease is a crippling. universally fatal brain disease of infants, children and adults. It is the most common neurogenetic disease in children. The disease entails progressive.

irreversible intellectual deterioration, visual loss, seizures, and eventually death. The cost of care constitutes an enormous medical and financial burden to families with afflicted children. The Committee believes that the Institute should more actively solicit and encourage quality grant applications for Batten's disease research and that it should take the steps necessary to assure that a vigorous research program is initiated and sustained. The Committee has provided up to $2 million for Batten's disease research".

As a direct result of this, the National Institute of Neurological Disorders and Stroke sent out a request for applications, RFA: NS-9101. In response to this, 26 excellent grant requests have been received. It would appear that from the appropriated $2 million set aside for Batten disease research that a significant number of these grant applications will be funded. It is obvious that when meaningful money is available, first class investigators will respond.

It is imperative, therefore, that this Committee again adopt similar wording as last year in order to be sure that these grants will continue to be funded. We suggest therefore that this year's appropriation bill contain the following specific wording:

"The Committee is not satisfied with the pace of research in Batten's disease. Batten's disease is a crippling, universally fatal brain disease of infants, children and adults. It is the most common neurogenetic disease in children. The disease entails progressive. irreversible intellectual deterioration, visual loss, seizures, and eventually death. The cost of care constitutes an enormous medical and financial burden to familes with afflicted children. The Committee believes that the Institute should continue to solicit and encourage quality grant applications for Batten's disease research and that it should continue to take the steps necessary to assure that a vigorous research program is initiated and sustained. The Committee has again provided up to $2 million for Batten's disease research".

We are confident that if research money in this amount continues to be available that within the very near forseeable future we will have determined the cause of this devastating disease which should then lead to prevention and treatment.

The amount requested is a small price to pay to solve a disease which is draining our national finanical resources to the tune of approximately 250 million dollars per year based on approximately 300 children born with Batten disease and at an average treatment and maintenance cost of $50,000 per year for each year of life. This life time, in a vegetative state. can last 10 to 40 years.

STATEMENT OF THE AMERICAN HEART ASSOCIATION

The American Heart Association, AHA, is dedicated to the reduction of disability and death from cardiovascular diseases. Coronary heart disease, stroke, and related disease account for almost as many deaths as all other causes combined. Annually these diseases cause about one million deaths in the United States. More than one in four Americans suffer from some form of these diseases. In 1991, the cost of cardiovascular diseases is estimated to be $101.3 billion in medical expenses and lost productivity.

The AHA research, public and professional education and community service programs emphasize the prevention of cardiovascular diseases. So, the goals of the Office of Disease Prevention and Health Promotion, ODPHP, and the Centers of Disease Control, CDC, are of primary importance to the AHA. Many of the AHA programs complement those of the ODPHP and the CDC. The AHA's Heart At Work program increases employee awareness and knowledge of cardiovascular disease risk factors and encourages behavior change that will lead to risk reduction. The AHA's Heart Treasure Chest program educates elementary school children about the cardiovascular system. Our Heart Rx program assists health professionals in counseling their patients about prudent lifestyles that can lead to improved cardiovascular health. This program includes booklets, pamphlets, posters and other materials that provide heart healthy advice about smoking, high blood pressure, nutrition, and the early warning signs of heart attack and stroke. The AHA's Physicians' Cholesterol Education Program assists doctors in counseling patients on controlling blood cholesterol levels.

Respective disease prevention and health promotion programs of the AHA, the ODPHP, and the CDC are aimed at reducing the costs of cardiovascular diseases. The AHA's comments and FY 1992 funding recommendations for the ODPHP and the CDC follow.

OFFICE OF DISEASE PREVENTION AND HEALTH PROMOTION, ODPHP

The ODPHP is the federal office responsible for policy oversight and coordination of prevention activities of the agencies of the Department of Health and Human Services, HHS. The ODPHP fosters the development and assimilation of similar activities in the private sector, services a national information center to facilitate access to and exchange of information concerning health promotion and disease prevention, supports projects, conducts research, and disseminates information about health promotion, preventive medicine and physical fitness.

In 1979, the first Surgeon General's Report on Health Promotion and Disease Prevention, Healthy People, was issued by the ODPHP. This was the initial federal document to describe a national commitment to improving health through disease prevention. It laid the ground work for what has become the cornerstone of the programs of the ODPHP--implementation of both the 226 objectives outlined in the 1980 report, Promoting Health/Preventing Disease: Objectives for the Nation and the 300 objectives in 22 priority areas in the newly released Healthy People 2000: National Health Promotion and Disease Prevention Objectives. The ODPHP Prevention Policy Staff assesses and reports on the Nation's progress in attaining the objectives outlined in these reports. The ODPHP coordinated the grassroots effort, involving all 50 states and over 200 national organizations in developing the national health objectives for the year 2000. The ODPHP continues to monitor, track data and stimulate implementation of programs in support of the 1990 Health Objectives and will provide similar leadership toward the implementation and monitoring of the year 2000 health objectives.

Other ODPHP components include the Clinical Preventive Services Staff, which coordinated the development of the U.S. Preventive Services Task Force's Guide to Clinical Preventive Services, an assessment of the effectiveness of 169 interventions and has provided the basic document for discussions of practice and reimbursement reform in prevention. The Nutrition Policy Staff works to strengthen HHS capabilities and national leadership in dietary guidance, nutritional research and monitoring, food labeling, safety, and quality, and international nutrition. The Health Communication Staff operates the National Health Information Center, the publication and data management center.

The President's FY 1992 budget recommends a flat budget for the ODPHP, $4.577 million. Enactment of this request would prohibit the ODPHP from instituting any planned new programs. The budget would allow for the continuation of only selected prevention and coordination activities including:

implementation of Healthy People 2000 Objectives, including the continuation of cooperative agreements with national membership organizations to tailor the objectives for special populations, professions, and settings, technical assistance to state-level objectives development, creation of implementation programs, coordination of public health and disabilities prevention efforts, and organization of school and children health promotion programs,

0 management and coordination of nutrition policy, including nutrition monitoring population surveys, with emphasis on low income groups,

support for the HHS Secretary's Council on Health Promotion and Disease Prevention, the Secretary's Health Promotion Initiative for disadvantaged and minority families, and program direction to enhance health and wellness through improved preventive health care and promotion of personal responsibility,

0 coordination of the National Worksite Health Promotion Resource Center, designed to develop models for health promotion programs, provide leadership in defining and solving work and healthrelated matters, and furnish technical support to employers and employee groups; and

staffing the U.S. Preventive Coordinating Committee consisting of 25 primary care, medical insurance, and related professional associations interested in preventive service in medical care settings, scientific review of new preventive interventions, and computer software to help physicians provide timely clinical preventive services.

An appropriation of $8.8 million for the ODPHP would allow the continuation of current services and the initiation of proposed initiatives which would focus on high risk populations, including children and low income groups. Planned new programs include:

"Healthy Schools," a collaborative venture with the Department of Education, the Centers for Direase Control, and the Alcohol, Drug Abuse and Mental Health Administration and other education and health federal programs to develop a national school health resource center charged with creating and testing comprehensive school health programs,

"National Fitness and Nutrition Public Education Program" to provide information to stimulate dietary and exercise change among the most hard-to-reach at-risk populations for chronic diseases and related premature death,

0 "Put Prevention Into Practice," professional and public education on use of clinical preventive services,

0 "National Center for Innovative Health Communication Technology," leadership in defining use of and dissemination of health applications for interactive video technology in schools, worksites, and clinical settings,

0 "Cost-effectiveness and Cost-utility Analysis of Preventive Services and Community-based Health Promotion," development of ODPHP capacity to apply cost-effectiveness analytic tools to various preventive interventions and dissemination of analyses for use in policy formulation;

"Worksite Health Promotion for Small and Dispersed-employee Businesses," development and implementation of health promotion programs and materials targeted to workers in services, transportation, and worksites employing fewer than 50 employees; and

0 "Healthy Older People II," revitalization of the award-winning Health Clder People public education program, including reorganization of the state coordinators' network, republication of out-ofprint materials and development and publication of new supplementary materials, and extension of the program to new agents at state and local levels.

CENTERS FOR DISEASE CONTROL, CDC

As the Nation's prevention agency, the CDC directs and coordinates chronic disease prevention activities. CDC works with state and local health departments, other federal agencies and voluntary, professional and international organizations in assisting during emergencies and in developing programs to understand the causes of disease and prevent their occurrence. The CDC's programs focus on changing lifestyles and other factors that contribute to disease.

The CDC has a prominent role in the implementation of the Year 2000 Objectives, especially those related to physical activity, nutrition, tobacco, and cardiovascular diseases. The CDC provides education, screening, surveillance, and technical assistance to prevent cardiovascular diseases and related risk factors.

The CDC is using FY 1991 funds in some innovative programs to prevent cardiovascular diseases and its risk factors, including:

helping 52 states, territories and the District of Columbia track cardiovascular diseases risk factors, such as high blood pressure, smoking, sedentary lifestyle, and obesity, through the Behavioral Risk Factor Surveillance System, a state-based telephone survey for monitoring health risk behaviors. Data from this program, the cornerstone of many state chronic diseases programs, helps states direct prevention efforts,

0 funding a national network of seven academic research centers to study risk factors for chronic diseases and develop model programs in health promotion and disease prevention. The center at the University of Washington in Seattle has shown that older adults suffer as much harm from smoking and benefit as dramatically from quitting as middle-aged adults. The University of Texas Health Science Center at Houston, which is examining health risk factors among young people to find ways to prevent cardiovascular diseases in later life, has found that teenagers on oral contraceptives had higher blood pressure and cholesterol levels than their peers who did not take the pill,

spearheading the development of a youth survey that will provide, for the first time, information on tobacco use, physical activity, nutrition, and seat belt use--the most important health factors for our nation's teenagers. State education agencies have administered this survey to high school students in 35 states and eight large cities. Results, available in the fall of 1991, will be used to better target health education messages for youth,

establishing new regional teacher training centers focused on comprehensive school health education. Over 12,000 teachers and other school personnel have received training, and

starting a five-year program in two North Carolina communities that will develop cardiovascular diseases and diabetes control strategies for black populations. Cardiovascular diseases are a major complication of diabetes. If we applied what we now know about diabetes control, an estimated 40,000 deaths and 80,000 hospitalizations due to coronary heart disease alone could be prevented each year.

Smoking, a primary contributor to cardiovascular diseases, cancer, and lung disease, remains the single most preventable cause of death in the United States. Each day, over 1,000 Americans die from tobacco-related causes. As the federal focal point for smoking and health issues, CDC's Office of Smoking and Health is charged with providing leadership for public health efforts to prevent tobacco use and its deadly consequences.

Funding for important smoking cessation activities has remained level at $3.5 million for nearly a decade. The President's budget requests $6.842 million for CDC's Office of Smoking and Health. The AHA applauds the request for an increase, but believes that the amount is insufficient to prevent the devastation wrought by tobacco. With an FY 1992 appropriation of $28.5 million, the Office could develop a comprehensive national tobacco control program, with special focus on those most at risk-women, children and minorities.

The Preventive Health and Health Services block grant is the largest source of funds for cardiovascular health programs for most states. Forty-two states use the block grant for high blood pressure and cholesterol control and other programs to promote heart health. Resources from the block grant account for 61 percent of the expenditures of these 42 states on heart health. This funding will also support states' efforts in implementing the year 2000 objectives.

Block grant funding supports screening and referrals as an important first step in detecting cardiovascular diseases risk factors, but most states lack sufficient funds to ensure that at-risk persons

are adequately followed up. Follow-up is essential, especially for minority and socioeconomically disadvantaged populations, for whom the burden of death and disease from cardiovascular diseases is disproportionately high.

Thanks to congressional support, the FY 1991 funding level of $90.845 million for the block grant represents a $7.7 million increase over FY 1990. However, after adjusting for inflation, the FY 1991 figure continues to be less than funding provided for the block grant in FY 1982. The AHA recommends an FY 1992 appropriation of $140.845 million for the block grant to enable states to more effectively fight cardiovascular diseases and its risk factors.

The AHA thanks this Subcommittee for its support of CDC in the past and urges increased funding in FY 1992. The AHA supports a total budget of $2 billion for CDC to ensure that its core programs, technology, and trained professional staff has sufficient funds for prevention activities. The CDC's past and current efforts targeting chronic disease, including cardiovascular diseases, have been effective. The AHA recommends an FY 1992 appropriation of $135 million for the CDC's chronic and environmental disease prevention activities. The increase over the budget request will be directed at chronic disease prevention activities, including $28.5 million for the Office of Smoking and Health. We recommend $140.845 million for the Preventive Health and Health Services Block Grant and $6 million for prevention centers. This funding will strengthen the CDC's core program for chronic diseases and enhance its capacity to provide needed leadership to states.

STATEMENT OF THE AMERICAN VOCATIONAL ASSOCIATION

Mr. Chairman and Members of the Subcommittee:

As President of the American Vocational Association (AVA), I submit this testimony on behalf of the 40,000 vocational educators of the AVA to request increased Federal funding for the Carl D. Perkins Vocational and Applied Technology Education Act. For Fiscal Year 1992, the AVA asks this Subcommittee to appropriate $1.6 billion for vocational education. This funding level represents the amount authorized for last year under the Act and would fund all categorical programs at authorized levels.

CHANGES IN THE PERKINS ACT REQUIRE ADDITIONAL FEDERAL FUNDING When the Carl D. Perkins Vocational and Applied Technology Education Act was signed into law on September 25, 1990, vocational education programs were dramatically changed. The new legislation did not merely reauthorize and extend through FY 1995 the existing Carl D. Perkins Vocational Education Act of 1984, but made comprehensive and far-reaching changes in the law that demand measurable improvement in all vocational-technical education programs. Improvement under the new Act requires increased accountability and strict assurances that special student populations, such as the disabled and the economically and educationally disadvantaged, participate fully in all Vocational education programs. All programs are required to improve the occupational and academic skill competencies of students in preparation for work in a technologically advanced society.

The Administration's FY 1992 budget request would fund vocational education at the same level as FY 1991. If vocational-technical education is to achieve the results mandated by the new Act, then a commitment of additional Federal resources is necessary. If the United States Congress is to provide the leadership needed to build a strong, competitive future for the American workforce, then vocational education programs must be given priority in education funding decisions. The intent of Congress during the reauthorization process was to improve both the image and the substance of Vocational-technical education. Nothing will go further toward improving the image and substance of vocational-technical education than improving the investment in vocational-technical education.

An increased appropriation for vocational education is not simply an expenditure of funds, but an investment in the future of students. This investment will help achieve the national education goals and will support efforts to increase national productivity and international competitiveness. Two of the major education goals as set forth by the President and the nation's governors are to increase graduation rates to 90% by the year 2000, and improve the knowledge and skills of the workforce. It has been demonstrated over the years that successful vocational education programs not only train the nation's youth for a competitive labor market, but also play a key role in preventing at-risk students from dropping out of school. Without a solid commitment in the form of Federal funding, these goals will be unachievable. While other nations place a premium on well-trained workers, lack of funding in the Administration's budget proposal vocational-technical education is shortsighted and will clearly prevent the American workforce from competing in an increasingly international economy.

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