STATEMENT OF DR. JOHN F. HERNDON, VICE PRESIDENT FOR MEDICAL AFFAIRS, NATIONAL CYSTIC FIBROSIS RESEARCH FOUNDATION

Mr. Chairman, distinguished members of the Subcommittee, I am Dr. John F. Herndon, Vice-President for Medical Affairs of the National Cystic Fibrosis Research Foundation.

I wish to thank the Committee for the opportunity to testify on behalf of House Bill No. 14284. Our Foundation speaks for 5 million lung-damaged children and more millions of anxious parents, grandparents and kinsmen. Figures do scant justice to such a situation, for there is no way of calculating the statistics of pain and despair. Yet figures offer a yardstick of need-and on the basis several deserve to be cited.

In 1965, out of the 92,866 infants under one year of age who died in these United States, 28,881 or 31 percent succumbed to respiratory diseases. Severe respiratory disease often begins in the newborn period; acute respiratory distress in the first few days probably accounts for more loss of life than any other single cause. Our country's poor record in newborn mortality compared with other nation's is due largely to this high rate of pulmonary failure.

Although deaths taper off after infancy, respiratory disease through childhood and into adulthood remains common. During 1966-67, for example, 171 million school days were lost by children age 6 to 16, and 57 percent of these absences were the result of respiratory diseases. Much if not most adult respiratory disease has its origins in early life. Need I point out the savings, in both human and economic terms, if progressive, irreversible lung disease were to be slowed or forestalled while the patients are still young? All too often where this would be possible, the necessary facilities, medical programs and personnel are lacking. Even for patients in whom the progress of chronic disease cannot be totally arrested, much more could be done to help in the attainment of the goal of fruitful lives.

For such reasons as these, gentlemen, the National Cystic Fibrosis Research Foundation endorses the bill to extend the Regional Programs for Heart, Cancer, Stroke and Related Diseases for an additional three years. We also believe that the modifications in HR 14284 significantly enhance the value of these programs. We especially commend the amendment of Section 5, paragraph 11 (c), which assures the applicant group seeking a Regional Medical Program a fair decision by providing a mechanism of appeal to the Council of the RMP.

As medical administrator for the NCFRF, I have seen numerous instances in which new programs have encountered opposition from unsympathetic local advisory groups. In many cases considerable time, effort and scientific-medical talent, aided by more than competent outside advisors, went into preparation of the Regional Medical applications which then received a negative response at the local level. Inquiry into such actions revealed that often the local group did not constitute what could be termed a true peer group. Indeed, authorities in all the medical disciplines or in the public health problems under consideration are not to be found in every community. Therefore, local advisory bodies may not always be qualified to judge the merit or appropriateness of a Regional Medical Program application.

Medical political considerations are a fact of life. Individuals who have served a particular geographical area over the years tend to believe they have a better understanding of current needs in that area than anyone else. They may not be correct, but they may control the situation. The April 10 issue of Science, the official publication of the American Association for the Advancement of Science, looks into the trend toward decentralization being fostered in the Department of Health, Education and Welfare by the present Administration. Weighing the pros and cons of this policy, which would transfer more authority to local groups, the writer observes: ". Given his expanded powers, a politically motivated regional director might conceivably turn his region into a patronage fiedom." I would say that even where patronage is not involved, the local or regional group may be weighted with persons who believe that local problems are best served by reliance upon existing, longstanding facilities, programs and standards. New ideas or approaches-whether in pediatrics or preventive medicine may receive less than due consideration.

Our Foundation has had knowledge of specific programs in connection with children's lung disease where there was little local interest or understanding. and needed improvements could not be effected.

It is not my intention to pass judgment or apportion blame, but I feel I should back up my general observation by citing specific instances. In Albany, New York, for example, an application for a Regional Medical Program in pediatric pulmonary diseases was blocked by men whose orientation was to internal medicine. There was an honest difference of opinion here based on a lack of insight into the need for a special pediatric program of this sort. Recently the local review body has indicated a change of heart and asked that the application be resubmitted. As one of the internists remarked, "We didn't understand the importance of this sort of thing. Now that I've seen what goes on in a Cystic Fibrosis Center, I realize that these pediatricians deal with a greater variety of lung conditions than the physician in adult pulmonary disease."

In Durham, North Carolina, doctors associated with the Cystic Fibrosis Center at Duke University Medical School submitted an application for a Regional Medical Program. Getting no reply, they investigated and finally learned that the application had been "mislaid."

Four medical institutions in the Los Angeles area joined forces and submitted an application for a carefully considered cooperative program. This was well enough regarded by the Medical-Scientific Council of our Cystic Fibrosis Foundation for us to commit funds of our own to the project. The local review committee, for reasons unclear to us, rejected it. Now it appears that if the individual hospitals decide to apply again for funding, they will do so separtely. If only from the standpoint of efficiency and economy, this diffuse effort is clearly less desirable than obtaining support in a single package.

A first and then a second application were submitted in Minneapolis for an RMP in pediatric pulmonary diseases. The rejections seem to have been based on the local committee's assumption that these diseases do not fall within the purview of the act pertaining to heart, cancer and stroke. The fact is, of course, that the rovision for "related diseases" is designed to include those in the pediatric pulmonary category. Again, the soundness of the proposed program, according to expert judgment, is attested by our own foundation's investment of approximately $40,000 each year in the work being done in Minneapolis.

It is a fundamental tenet of democracy that citizens are entitled to a hearing and, in the event of an adverse decision, to an appeal. At the very least, those whose applications are rejected should be able to clarify the question of whether such a rejection upholds or runs counter to the intent of Congress.

In creating the Regional Medical Program Services on a three-year trial basis, Congress acted wisely. Thanks to this trial period, we have had an opportunity to detect a flaw in the system. Now we know that too much local control can result in arbitrary disapproval of some meritorius applications.

It is only in the past few years that the magnitude and seriousness of pediatric plumonary disease and its impact upon the national well-being have begun to be recognized. Because of previous lack of awareness, as well as a general shortage of doctors, there is a dearth of physicians qualified to diagnose and treat such disease. The penalty in infant mortality, to say nothing of health deficits in later life, has already been noted. That we have awakened to the problem, even belatedly, is due to the zeal of a number of distinguished men of medicine who have brought the facts to public attention-some by appearances before other Congressional committees. Doctors of the calibre of Giulio J. Barbero, Milton Graub, Paul A. Patterson, and LeRoy W. Matthews, all of them directors of Cystic Fibrosis Care, Teaching and Research Centers in major cities, have offered expert and relevant testimony. In addition, there have been eminent witnesses not connected with our Foundation such as Dr. Frederic G. Burke, Professor of Pediatrics at Georgetown University.

Their testimony has brought about the inclusion in the RMP of cystic fibrosis and other serious lung diseases. At the same time this was done, the scope of the Chronic Disease Control of the Public Health Service was expanded to cover the same spectrum of disorders.

We refer this Committee to testimony by Dr. William W. Waring, Chief of the Section of Pulmonary Diseases, Department of Pediatrics, Tulane University School of Medicine; Dr. Thomas L. Petty, Associate Professor of Medicine and Director, Respiratory Care unit, University of Colorado Medical Center, Denver; and Dr. Giulio J. Barbero, Chairman, Department of Pediatrics, Hahnemann Medical College and Hospital, Philadelphia. Dr. Waring speaks from his experience as a director of one of the pediatric pulmonary centers funded by the Chronic Disease program of the Regional Medical Services. Dr. Barbero directs a cooperative effort in which three hospitals are serving the community under a

combination of Chronic Disease and Regional Programs. From all evidence, this prototype effort has been working extremely well.

The picture regarding both the Regional Medical Programs and the Chronic Disease Center program would be wholly gratifying were it not for the Administration's decision to phase out the Chronic Disease Center program. The effect, already being felt, is for each Regional Medical Program to become a separate unit functioning in geographical isolation without the stimulus to productivity and creativity of coordination on the national level. The comments coming to me from our experts in the field clearly express their sense of being cut off from their colleagues and from the benefits they experienced as partners in a nationwide endeavor.

I have mentioned testimony by several of these experts, which will be submitted for inclusion in the record. I should like to quote from the letter by Dr. Waring, whose Regional Medical Program in pediatric pulmonary diseases is centered in New Orleans at the Tulane University School of Medicine. “The decision . . . to discontinue the Chronic Respiratory Diseases Control Program and its parent, the National Center for Chronic Disease Control, in my opinion was unwise," says Dr. Waring.

"This was the only federal agency that was responsible for clarifying knowledge of the incidence and types of chronic pulmonary disease and for supporting studies designed to prevent, control or cure them."

In a reference to the National Cystic Fibrosis Research Foundation, Dr. Waring remarks that it "can be justly proud of its role in developing within medical schools regional centers concerned with cystic fibrosis and other pulmonary diseases of children. Their triple goal of care, teaching and research has encouraged the development of interest and skills in pulmonary diseases by fulltime academic pediatricians. These individuals are beginning to produce others like themselves. Unfortunately, however, the magnitude of the problem far out weighs the sources of a relatively small private foundation. It seems to me that the greater resources of the federal government are needed.

"This was exactly where the former National Center for Chronic Disease of the U.S. Public Health Service was beginning to be so effective," says Dr. Waring. After describing the progress achieved and the possibilities opened up under the auspices of the Chronic Disease Center, Dr. Waring asks: "If the National Center is not reactivated, from what source and by what means will such new ideas emerge and be funded? As good as the Regional Medical Programs concept is, it has deficiencies, and its decentralization may at times be one of them."

Near the close of his letter, Dr. Waring alludes to the local review process which must now be cleared by RMP grant applications. "I know of several instances," he says, "in which local politics have absolutely stopped a good pediatric pulmonary center grant application initiated by a man of national stature. Peer review is a good idea, but some of these grants have never reached a man's peers, because in a developing field the peers may not be on the local scene.

"It is not my purpose," he continues, "to point out deficiencies in the RMP granting process with regard to children's pulmonary diseases. Rather, I want to emphasize the need for a centralized governmental agency overseeing, but not controlling, the field of chronic pulmonary diseases. I believe that this agency should be able to see the importance of the development of pediatric lung experts and children's pulmonary centers. Adequately funded, this agency should selectively support projects that would help to ensure the health of children's lungs.' He concludes by asking, "Wasn't this part of the purpose of the old National Center for Chronic Disease Control?" Should not this purpose now be reinforced and strengthened rather than phased out?

Dr. Waring's argument offers an authoritative and judicious opinion on what should be done. Adding my own thoughts to his, I wonder if, in reinstating the Chronic Disease Control Center, we might start afresh by renaming it the Contract Division of the Regional Medical Programs. This would describe its vital function, which is to provide on a contract basis for the funding of clinical, training and research endeavors necessary to the basic operations of RMP.

Once more, and for the last time, let me emphasize the importance of the amendment guaranteeing national review. The fact that there is some appeal to higher authority to redress a decision will encourage local groups to make further efforts. The opportunity to try again is all-important. Where a single individual can prevent an application from reaching the local advisory committee, as happened in at least one case, this safeguard is essential.

Your amendment, Mr. Chairman, will discourage such obstructionism because local advisory groups will realize that their actions are subject to higher scrutiny. We feel that the two elements of the bill you propose serve to complement and reinforce each other. Because the Chronic Disease Center is the major agency for the overall chronic disease program, it must not be abandoned.

In conclusion, I would make the perhaps obvious point that we are a United States, not 51 unrelated regions. A local health problem is by the nature of our society a national health problem. Conversely, the skill and talent of one area should not be denied other parts of the country because of artificial geographical fragmentation.

Gentlemen, I urge you to consolidate and extend our hard-won gains in health protection by ensuring continuation of the programs on which you have heard this testimony. I thank you for the privilege of appearing before you.

Dr. JOHN F. HERNDON,

TULANE UNIVERSITY,
SCHOOL OF MEDICINE,

New Orleans, La., March 16, 1970.

Medical Scientific Director, National Cystic Fibrosis Research Foundation, New York, N.Y.

DEAR DR. HERNDON: I am writing at this time because I know that the National Cystic Fibrosis Research Foundation has become increasingly concerned with diseases of children's lungs. The decision by the U.S. Public Health Service to discontinue the Chronic Respiratory Diseases Control Program and its parent, the National Center for Chronic Disease Control, in my opinion was unwise.

This was the only federal agency that was responsible for clarifying knowledge of the incidence and types of chronic pulmonary disease and for supporting studies designed to prevent, control, or cure them. Chronic pulmonary disease is not limited to the adult members of our society. There is no doubt that a substantial proportion of adult lung disease has its origin in genetic or childhood environmental factors that set the stage years before the disease appears clinically. More must be done to study the earliest stages of pulmonary disease during infancy and childhood. Diseases of the lungs of children are no more simply small versions of adult pulmonary diseases than are children themselves miniature adults. Their diseases are frequently qualitatively and quantitatively distinct. Respiratory distress syndrome of the newborn and cystic fibrosis are two diseases that most physicians handling adults do not know.

The subspecialty of children's pulmonary diseases is now emerging as a genuine part of pediatrics, just as pulmonology has become firmly established as a branch of internal medicine. The National Cystic Fibrosis Research Foundation can be justly proud of its role in developing within medical schools regional centers concerned with cystic fibrosis and other pulmonary diseases of children. Their triple goal of care, teaching, and research has encouraged the development of interest and skills in pulmonary diseases by full-time academic pediatricians. These individuals are beginning to produce others like themselves. Unfortunately, however, the magnitude of the problem far outweighs the resources of a relatively small private foundation. It seems to me that the greater resources of the federal government are needed.

This was exactly where the former National Center for Chronic Disease of the U.S. Public Health Service was beginning to be so effective. The directors of this program recognized the need for attention to lung diseases in children, both for children and for adults. As you know, by means of several contracts with medical schools in various parts of the country, including our own, pediatric pulmonary centers were established for a period of three years. Physicians in these centers are struggling with all the problems related to a developing subspecialty. These include, as examples, workable nomenclature that will serve to standardize disease names, new methods of teaching people about pulmonary disease through innovative audiovisual methods, training programs for pediatricians who wish to specialize in children's pulmonary diseases, and applications of computer technology for both case registries and teaching. The extraordinary things about these four centers is their healthy spirit of cooperation. The progress reports of each have been shared with other centers, so that each knows what the others are working on and exactly how far the job has gotten. This splendid spirit has been aided in the past by the National Center for Chronic Disease Control, which fostered it by regular meetings of the center 46-566-70-12

directors, both in body and by means of telephone conferences. In addition, the statistical and bibliographic resources of the National Center were made available to pumonary program directors. The spirit of cooperation engendered by the National Center has led to the formal creation of an Association of Pediatric Pulmonary Centers. This new association has already invited non-contract center directors to join them in a united attack on pulmonary diseases. This association has met already in Los Angeles, where its members could study the operations of one member center, and will next meet in Cleveland at the time of the American Thoracic Society meetings. The U.S. Public Health Service should be proud of this tangible evidence of its ability to unite physicians in a common fight. I feel certan that the Association of Pediatric Pulmonary Centers will continue, regardless of whether the National Center for Chronic Disease Control is reactivated or not.

However, if the National Center is not reactivated, from what source and by what means will such new ideas emerge and be funded? As good as the Regional Medical Programs concept is, it has deficiencies, and its decentralization may at times be one of them.

Several pediatric pulmonary centers have been formed by RMP grants. Up to the present each of these centers has worked on its own with no network of communication informing others with similar interests of their goals and progress. This liaison was maintained by the old National Center for Chronic Disease Control.

As you know, RMP grant applications must clear a local review process. I know of several instances in which local politics have absolutely stopped a good pediatric pulmonary center grant application initiated by a man of national stature. Peer review is a good idea, but some of these grants have never reached a man's peers, because in a developing field the peers may not be on the local

scene.

It is not my purpose to point out deficiences in the RMP granting process with regard to children's pulmonary diseases. Rather, I want to emphasize the need for a centralized governmental agency overseeing, but not controlling, the field of chronic pulmonary diseases. I believe that this agency should be able to see the importance of the development of pediatric lung experts and children's pulmonary centers. Adequately funded, this agency should selectively support projects that would help to ensure the health of children's lungs. Wasn't this part of the purpose of the old National Center for Chronic Disease Control? Should it not be re-established?

Yours sincerely,

WILLIAM W. WARING, M.D., Chief.

ABBREVIATED CURRICULUM VITAE: WILLIAM W. WARING, M.D.

I. Born: 1923.

II. Education: Harvard Medical School (M D., 1947).

III. Postgraduate Training: Children's Hospital, Boston, 1947-48; Johns Hopkins Hospital, Baltimore, 1948-1952.

IV. Present Academic Appointments (Tulane University School of Medicine) : Professor of Pediatrics; Lecturer in Physiology; and Chief, Section of Pulmonary Diseases, Department of Pediatrics.

V. Other Appointments: Councilor at Large, American Thoracic Society: Chairman: Care, Teaching, and Research Center Committee; National Cystic Fibrosis Research Foundation.

[The following comments from Dr. Thomas L. Petty were reviewed by the Executive Council of the American College of Chest Physicians. The Council unanimously endorsed Dr. Petty's communication.]

WE NEED PROGRAMS FOR CHRONIC AIRWAY OBSTRUCTION!

To the Editor: It is well known that our nation's most rapidly growing health problem is chronic respiratory disease-most notably, emphysema and chronic bronchitis. Frequently published statistics document the magnitude of this prob lem. For example, in the past 15 years new case identification, morbidity and mortality have doubled during each five year period for emphysema and chronic bronchitis together.12

1

1 Stone, R. W.: Magnitude for the Problem, Arch. Environ. Health, 6: 306, 1963. 2 USPHS Publication, 1715, 1967.