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quences of a decrease in purchasing power for the entire GMS program, basic and applied, need not be repeated at this time.

The Cystic Fibrosis Foundation therefore urges the Congress to support the budget of the National Institute of General Medical Sciences at the suggested level of $213,435,000.

NATIONAL INSTITUTE OF ALLERGY AND INFECTIOUS DISEASES

NIAID research in infection, particularly of the respiratory tract, and in immunity are of the greatest importance to the long-term care of victims of cystic fibrosis. That basic research in microbial genetics is related to the search for the genetic defect that causes the disease, that basic studies in understanding the body's defense mechanisms are important to the CF patient and that victims of cystic fibrosis suffer from the general run of diseases which are within the Institute's purview, clearly show why we support a fiscal year 1977 budget request of at least $180 million.

The President's 1977 budget request of $135,615,000 is about $8 million over the 1976 appropriation. This is basically a cost-of-living increase and will not allow any significant new thrust or expansion of ongoing areas of research. We estimate that $150 million is necessary just to maintain the fiscal year 1976 level, if one applies the Government's own cost deflator figures. We also estimate that another $30 million is needed to allow for new initiatives and expanded efforts. Of interest in this area is the desire of the Institute to give new direction to some of the asthma and allergic disease centers, in addition to starting new centers for a unified multidisciplinary approach to the allergic, infectious, and physiologic aspects of acute and chronic respiratory tract diseases. Both of these efforts relate closely to the objectives of the CF Foundation. This approach should maximize the use of new information in improving the management of patients with respiratory tract disease. More effort to relate histocompatibility antigens (immune response genes) to susceptibility to a variety of diseases such as cystic fibrosis is necessary. This information may be of major importance in the identification of the genetic defect and the early detection of carriers of cystic fibrosis. Funding is required to support a number of program projects in clinical immunology and to generate the typing sera needed for such an endeavor. Both of these efforts, which have ramifications in other grant and contract activities as well as in the areas of training, are projected to cost in the order of $15 to $20 million.

MATERNAL AND CHILD HEALTH SERVICES

We concur with the position of the American Academy of Pediatrics and the Coalition for Health Funding in supporting an appropriation of $350 million for Maternal and Child Health Services.

The President's 1977 request for MCH is $211,422,000. Such a figure would represent a 34-percent decrease from the 1976 budget of $321,908,000.

The language in the 1976 budget provided for two additional pediatric pulmonary centers beyond the existing 10 centers, but with no additional money over and above the $2 million budgeted for the existing centers. To fund these centers properly, between $200,000 and $300,000 for each center would be required. To fund 12

centers in fiscal year 1977 will require $3.6 million. We, therefore, support earmarking $3.6 million for 12 pediatric pulmonary centers. There is a need for at least two additional pediatric pulmonary centers, and preferably four additional centers, because of the increasing patient load, the importance of considering geographic location, and the necessity to provide the specialized care available in these centers. Any increase in the number of pediatric pulmonary cnters must be covered by adequate funding of between $200,000 and $300,000 for each center.

Of the $350 million which should be appropriated for MCH, $320 million is designated for formula grants and $30 million for research and training. The $320 million provides only for inflationary costs and does not take into consideration increased demands brought about by identifying more children who need care by the E.P.S.D.T. There is a need to provide for clinical training as well as research training, in order to support the manpower programs which will furnish adequate numbers of specialists urgently required in the pediatric pulmonary field, and in order to insure continuing education and appropriate transfer of applicable research findings to clinical practice.

We would also strongly urge that every State cover the over-21 cystic fibrosis patient under the Crippled Children's Services Program. There are currently seven States which have obtained programs to extend the crippled children's services to the over-21's. Because of the catastrophic cost of cystic fibrosis, this requirement should be mandatory in all States which have a CCS program.

In summary, our effort to support the groups just mentioned is brought about by an urgent desire to improve the quality and duration of life for those who suffer from chronic pediatric lung and gastrointestinal disorders. Even though cystic fibrosis is today a relatively small categorical disease entity among the many important diseases afflicting our population, we emphasize the fact that it occupies an important position among the generalized genetic disorders and that it serves as a model disease for the pediatric age group. Nonetheless, we must also begin to direct our planning to deal with the projected patterns of this disease over the next 10 to 15 years. A thorough review of the changing medical, social and economic aspects of CF should be initiated as soon as possible, since a major problem will be upon us before we realize it. In this important venture, the possibility of productive interaction between the various Government agencies and the Cystic Fibrosis Foundation should not be minimized or neglected. Working in concert with each other, the private foundation can provide Government with an important type of input which cannot be measured in terms of dollars. The dedication of highly skilled professionals, with their finely honed focus on the disease, as well as the direct involvement of both patients and professionals interested in CF, constitute a resource which can be of vital importance in the creation of programs to deal with the overall problem. Basic to the development of any such long-range program is the need to generate an increasing body of information which will improve our ability to deal with the disease itself. I am sure that you will do all in your power to support the productive activities of the various institutes at the NIH with regard to cystic fibrosis and other lung and gastrointestinal diseases of childhood, so that this group of disorders will come under control in the near future.

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PRO

PROJECTED NUMBER OF DIAGNOSED C/F PATIENTS UNDER CARE

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40,000

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