Page images

the areas of hearing, voice, speech and language, which are just part of the mission of the NIDCD, result in the enhanced ability to communicate. The optimizing of personal communication is a critical factor for economic growth of the individual and the nation in this era which is called the "era of the communication society". Disabilities of communications, including hearing loss, voice, speech and language defects, are major factors in economic and social failure of individuals and societies. The mission of the NIDCD is essential to the continued leadership of our nation in the world and to the maintenance of a productive society whose benefits can be shared by all of its citizens, as well as, most importantly, the personal health of our citizens.

The NIDCD is now three years old. These first three years have been remarkable and confirm the need for this new institute, which the lay and professional communities asserted several years ago. Of first and foremost importance is the quality of the leadership and the staff which has been attracted to the NIDCD. Dr. James Snow, one of the most prominent otolaryngologists in the nation, has become the first permanent Director of the NIDCD. He has been able to recruit an administrative staff of excellence and has begun to build a superb intramural program. The extramural staff has worked to articulate the opportunities and needs in our field, and that has served to attract investigators to the field of deafness and other communication disorders. Many of the areas of opportunity for research advancement in deafness and other communication disorders were not identified, nor were resources provided, before the establishment of the NIDCD.

Thus, as a result of the establishment of the NIDCD, today there is the opportunity for advancements in these socially critical areas of deafness and other communication disorders. This is evident by the increased numbers of research grant applications. When the NIDCD was begun in 1989 there were 254 applications. The number of applications for 1992 is expected to more than double and will be approximately 546. This is an unprecedented demand on the resources of an institute. The doubling of quality applications has come about because of the recognition by the scientific community of the need for the research, the opportunity to carry out the research, and the well-founded confidence that the projects can be carried out and their results will be of use to the nation. The major factors responsible for the substantial increase are: (1) the staff of the NIDCD has brought the needs and opportunities of the research programs to the attention of the research community; (2) the scientists now have tools, e.g., gene probes, computers, etc., with which they can successfully carry out studies in deafness and communication disorders; (3) the magnitude of the economic and social significance of the research is recognized by the community; (4) private philanthropy has assisted in building a small but critical scientific and clinical infrastructure which is now able to compete effectively to obtain these grants; and (5) men and women are eager to dedicate their careers to these new exciting and profoundly significant areas of basic and applied research.

There is, of course, the need to provide the resources to carry out this significant work. The NIDCD Advisory Board recommends a budget for the NIDCD of $200 million. Also, there is a professional judgment budget (PJB) which is $30 million over the President's budget. Usually, a professional judgment budget will allow for 50 percent of the grants to be funded. This PJB is conservative, for if granted, it would only allow for a 42 percent success rate.

The entire PJB recommendation of $201 million would allow for the support of 399 noncompeting grants and would bring the institute into compliance with the elimination of downward negotiations required by the new NIH management plan. The PJB allows for 232 new and competing grants at their recommended cost.

The institute has placed an emphasis on studies in areas of molecular biology and genetics. It is expected that many of these new grants will be in these targeted areas. The NIDCD has, in the few years of existence, already enabled research which has resulted in the delineation of genes for two of the more common forms of deafness, Waardenburg's syndrome and Usher's type II. Undoubtedly, there will be many more successes to follow.

The PJB would provide an additional $11 million for centers. These will include 9 clinical centers, 10 research and training centers, 5 exploratory research awards, and 5 core centers. These funds would allow for the establishment of an essential infrastructure for research and teaching. The young men and women who have been attracted to this field will be able to gain the necessary skills and work within an environment which has the needed contemporary tools to carry out the studies in a most effective and efficient manner.

The request of the PJB of $201 million also will allow for a limited number of other activities to be carried out. These will include $3.4 million to increase contracts. These are, in the main, for studies which allow for the testing of health innovations. There is a request for $2.3 million for 59 additional full-time training posi

tions and for stipend increases. The intramural program needs $5 million to expand and be able to relate deafness and other communication disorders to the broad base of intramural research, both basic and clinical, which occurs within the National Institutes of Health (NIH).

The American Academy of Otolaryngology-Head and Neck Surgery, Inc. concurs with the NIDCD Advisory Board and strongly recommends $201 million for fiscal year 1992 in order to take advantage of the research opportunities which exist and to support the men and women who are dedicating their careers in this area. This substantial increase would allow the NIDCD to expand its quest of prevention and cure for deafness and other communication disorders which affect at least 48 million Americans.

Also, please allow me to bring to your attention a new and exciting program of our Academy, relating to the environment.

Unquestionably pollution causes numerous medical disorders treated by our members: hearing loss from excessive noise; nasal throat, sinus, voice and respiratory problems caused by both outdoor and indoor air pollution; and skin cancer due to ultraviolet sun rays.

As physicians, we are rigorously trained in medicine and science, and experienced in the observation and diagnosis of diseases (some caused by environmental pollutants) and are in a unique position to lead environmental protection and pollution prevention efforts. Our specialty, better than any other, can point to a number of environmentally caused health effects, and potentially can educate our patients, and others, especially those in government, as to how environmental problems can cause harm to the health of individuals.

Otolaryngology will be the first medical specialty society to take action on the environment in this way. This course of action was discussed extensively by our LongRange Planning Committee last summer. As a result of their favorable recommendations, a Committee on the Environment was created in the Academy.

The NIDCD, in cooperation with the Library of Medicine at NIH, completed a literature search on environment and pollution as related to otolaryngology. We will continue to work closely with NIH to push forward in this field.

Please find attached to this testimony a copy of our just-published brochure which explains our program; 55,000 copies have been printed and will be distributed to our physicians' offices for use with patients.

As you can see, we are cooperating in this project with the Senior Environment Corps, a just-formed nonprofit organization which seeks to involve seniors (over 50 years of age) in environmental matters.

Thank you for your strong support in the past of the NIDCD and otolaryngology research in particular.

I will be pleased to answer any questions you may have.

Senator INOUYE. Thank you very much, doctor.

I am not certain you were here when the Hawaii witnesses were. Dr. RUBEN. Yes; I was, sir.

Senator INOUYE. As a result of a very small study that we made in Hawaii on otitis media, we found that over one-half of the young men and women of native Hawaiian ancestry had measurable hearing loss. Is otitis media very common?

Dr. RUBEN. Yes; it is, and this is one of the areas which I have worked in. We see it in children especially, and it has two sets of consequences. It has an infectious disease consequence with sickness, fever, it can go on to rather serious things. By and large, this is well contained with antibiotic treatment.

The other consequence is the residual hearing loss, which leaves a linguistic, a language deficit which is much more apparent in expressive language than in receptive language. For many years, I was kind of standing out there all by myself and publishing papers about it. It has now been very widely and completely accepted that even these minor types of hearing losses will cause significant language abnormalities, which in our society today represents an inability to work in the society, to achieve from the society.

If we look at the more protracted cases, if we look into juvenile delinquents, we find that their incidence and prevalence of commu

nication disorders is manyfold greater than normal controls. If we look into children who have other disadvantages and then just give them a little temporary hearing loss when they are 1, 2, or 3 years of age, then we buy a lot of tragedy and inability of this child to grow up to be a useful, productive citizen and also to be a useful, socially integrated citizen.

So it is a substantive problem, and it is a substantive problem with people within the Pacific Basin. We see it also within our American Indian population.

Senator INOUYE. Are we doing anything about it?

Dr. RUBEN. Yes, sir; the NIDCD and the Child Health Institute has a number of grants, and these grants have now looked at, one, the control of it from an antibiotic therapy. I am a very fortunate individual as I head up one of the centers which are looking at the linguistic problems, how to diagnose it early, how to correct the linguistic problems, how to bring people's attention to it so that things can be done so that you can reverse this and prevent, better than


Senator INOUYE. Well, I thank you very much, sir.

Dr. RUBEN. Thank you, sir.


Senator INOUYE. And now our final witness, the president of the board of directors of the American Social Health Association, Dr. David J. Sencer.

Dr. SENCER. Thank you, Mr. Chairman.

Senator INOUYE. I commend you for waiting all these hours.
Dr. SENCER. I should thank you for waiting.

I am reminded of a good number of years ago when I was the director of CDC. I was asked to give a talk to one of the major medical societies in the country, and there were a series of panels that started off. The first panel was on the management of the bleeding peptic ulcer. There were 500 physicians in the room. I followed to talk on immunization and prevention, and there were five.

So I feel right at home with an empty group behind me. So I thank you for being here.

Senator INOUYE. No; there is a lady waiting there.

Dr. SENCER. She is with me.

As you said, I am the president of the board of directors of the American Social Health Association. The American Social Health Association is the only nonprofit organization that is solely dedicated to the control of all of the sexually transmitted diseases.

Perhaps with this committee's interest in pediatrics, I should mention that my oldest daughter is a pediatric fellow in oncology, and maybe that will help stimulate your interest in venereal dis


I appreciate the opportunity to appear here to give our association's views on the funding for the Centers for Disease Control and the National Institute of Allergy and Infectious Diseases. I doubly enjoy this opportunity, having formerly been in the Federal Government, since I can testify today to what I see as the true need, rather than having to defend, as I often did, the OMB's perceived needs.

In the past this committee has acted, I think, upon the true needs of the country, rather than being fettered by many of the concepts of the administration.

I would like to emphasize today three misconceptions. First, STD's are not a problem of the past. In spite of our national expression of concern for prevention, the STD problem is out of control. There were over 12 million cases reported in the United States last year.

Senator INOUYE. How many?

Dr. SENCER. Over 12 million. Second, the STD's are not a minor medical problem, something that can be cured with a shot of penicillin. Rather, they cause infertility, they afflict the newborn, they are associated with several different types of cancer, and may be an important cofactor in the transmission of HIV infection.

Third, contrary to public opinion, STD's are not primarily a male problem, but an ever-increasing problem for women, particularly as our new techniques for diagnoses are more broadly applied.

Studies have been conducted by the National Academy of Sciences and the University of California at San Francisco that would estimate the annual cost of sexually transmitted diseases are $7.6 billion. When the people from the cancer coalition were testifying, you suggested that they give you some information that you could take home. Let me give you some information that you can take home to Honolulu.

I think usually witnesses try and tell you how bad things are in your own district. I would like to tell you how good things are in some respects in the sexually transmitted disease problems in Hawaii. They have done an excellent job.

Hawaii is one of the few places that has had additional support from the Federal Government, from the Centers for Disease Control, to set up screening for chlamydia, which is one of the bacterial diseases of women and men that is frequently undiagnosed. It is one of the diseases that causes pelvic inflammatory disease and can lead to infertility.

A cooperative program in Honolulu was set up between family planning clinics, emergency rooms, and the State health department to screen asymptomatic women who presented with a variety of other problems. They found that in this screening of around 3,000 women, they found 798 women who were infected, and the cost of treating them and operating the program was $120,000.

The average cost of treating a case of pelvic inflammatory disease, a complication of this infection, is around $3,000. So with this $120,000 expenditure in Honolulu, there was a net saving of $700,000, which I think shows that the expenditures that this committee has authorized in the past can bring home some concrete dollar savings as well as savings in misery.

For the past 5 years, the incidence of syphilis has continued to increase. There were over 137,000 cases of syphilis last year, double the number of 5 years ago.

Second, let us talk a little bit about the seriousness of the problem. When left undiagnosed or untreated, the sexually transmitted diseases have serious consequences. As I said before, they have been associated with several forms of cancer, particularly cervical cancer of women.

The viruses that cause herpes and human papilloma virus disease have been implicated as one of the cofactors in causing cervical dysplasia, which is a precursor toward carcinoma of the cervix. Whether this proves to be a preventable situation we as yet do not know.

But one of the few preventable causes of infertility is pelvic inflammatory disease when it is caused by an undetected sexually transmitted disease. Almost 150,000 women are stricken with infertility each year because of these sexually transmitted diseases. Most of them are due to gonorrhea and to chlamydia.

By treating the STD's, we can also prevent many cases of infant mortality and disability. If an infected woman passes a sexually transmitted disease to her child during pregnancy or delivery, that child can suffer serious physical and mental damage, even death. The cases of congenital syphilis continue to rise across the country, with 7,000 cases last year. Untreated, syphilis in mothers results in two-thirds of the babies being stillborn and the survivors are damaged, many to the point of death.

The relationships of the STD's and the increased susceptibility to HIV infection seems quite strong in Africa. This association is now beginning to appear in the United States, particularly in the inner cities. Many health professionals believe that an important element of a program to control the spread of HIV is a stepped up program to control other sexually transmitted diseases.

You asked Dr. David about the coordination between AID, the World Health Organization, and many of the things in the Public Health Service. I think this is a good example of where that coordination is working. The techniques of venereal disease control that have been developed in centers in this country, many of them supported by NIH research grants, are now being applied in Africa both by programs funded by AID and by the World Health Organization, trying to determine whether doing something about venereal disease or sexually transmitted disease can prevent HIV infection.

The problem of the sexually transmitted diseases has become so acute that this year a group of national organizations with special interest in disease prevention has highlighted the need to increase our efforts to prevent the spread of STD's and their devastating impact on the lives of people.

As the president of the American Public Health Association mentioned in his testimony earlier today, the American Social Health Association is part of the APHA coalition that has made the recommendation that a $37 million increase in the Centers for Disease Control budget be earmarked for sexually transmitted disease, with $12 million of that going for the control of syphilis and $25 million for the control of infertility, chlamydia, and gonorrhea activities.

It is strongly urged that, of that total amount of $37 million, $3 million be set aside for the maintenance of the programs, the internal programs on sexually transmitted disease activity at the Centers for Disease Control.

The coalition recommends $64 million, an increase of $24 million, for the National Institute of Allergy and Infectious Disease. This increase would allow for expanded research in pelvic inflammatory disease, the development of less expensive testing methods for the

« PreviousContinue »