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developed by indigenous aides, pretested with lay populations from that hard-to-reach population, and organized into an educational packet for physicians, health care professionals and paraprofessionals to disseminate and use in education programs for these ethnic populations.

This guide is designed to accompany Implementing Lifestyle Changes: Nutrition in Health Promotion and Disease Prevention: How to Help your Patients Improve their Eating Habits. This second low literacy guide would specifically address the unique issues of low literacy and ethnic groups through the development of educational materials which will be used in the guide for primary care physicians and health professionals providing care to a clientele of either mostly ethnic populations or low literacy. The first criterium required the development of the appropriate education materials that physicians and other health care providers can use to both change their office environment and use in teaching patients who belong to these special populations.

NCI has provided support for the initial development and implementation of research networks for the purpose of research capacity building as well as to stimulate research on cancer control for Hispanics, American Indians/Alaska Natives, Native Hawaiians, and Blacks.

NCI has participated in the National Cancer Advisory Board's National Black Leadership Initiative on Cancer. The purpose of this initiative is to develop a plan for the national mobilization of the Nation's Black leadership to support the Year 2000 goals of the NCI and to stimulate Black community involvement in this effort. A series of six regional meetings were held across the U.S. This effort has enhanced the level of understanding among these community opinion leaders who are now directing their energies toward curbing some behaviors that are especially detrimental to the health of Black Americans. Most notably, health promotion messages have been developed with respect to cigarette smoking, dietary practices and the utilization of effective early detection procedures.

We have been collaborating with the District of Columbia's Health Department staff in an attempt to develop effective strategies for reducing the city's high cancer mortality rate. Technical assistance and training are being provided and we are making available research expertise and consultation.

A workshop for Native Americans to translate cancer data into culturally sensitive terminology and concepts has been implemented. The two-day workshop included 45 participants from diverse regions of the U.S. The participants included health care providers, clinicians, and indigenous community health representatives in American Indian and Alaska Native reservations, urban clinics, tribal hospitals, and Indian Health Servicesponsored health care settings.

NCI continues to place cancer incidence and mortality rates in minority and underserved populations among its highest priorities and is undertaking many initiatives in this area.

If requested, NCI will provide the committee with list of specific projects in this area.



BUDGET REQUEST Senator HARKIN. Dr. Lenfant, we have your budget request of $1.2 billion with $54.5 million of that increase delayed for obligation until September 19. Your request is an increase of about 6 percent. Most of your Institute's increase is proposed for research project grants with funding for centers and training held relatively flat. My compliments to you, as well as Dr. Broder, for the successful gene therapy experiment that was conducted last fall, and any other insights on that that you might have I would be pleased to know. Please proceed with your statement.

GENE THERAPY Dr. LENFANT. Thank you, Mr. Chairman. I am very pleased to have the opportunity to report about some of our programs.

Indeed, taking the example of gene therapy, I wanted to spend some time on the case which has been described to you by Dr. Broder. So, I will not repeat what he has said except that I would like to underscore that, indeed, we have cause for optimism with regard to the particular patient he mentioned. The reason for it is that a few weeks ago this little girl and her family all developed a respiratory infection. The little girl came out from this respiratory infection with flying colors, if I can say that, and hadn't she been treated before, probably the evolution would have been quite different. So, that really gives us a good cause for being optimistic about the effectiveness of the gene transplant she received.

Now, I would like to take two other examples where gene therapy is giving us some prospects for important clinical advances.

The first one concerns cystic fibrosis. One of our researchers has successfully inserted the cystic fibrosis gene into the airways epithelial cells of living animals. Measurable indicators of gene expression in the lung tissue of these animals have been obtained.

Another example concerns alpha-1-antitrypsin deficiency. And, indeed, in just a few weeks, a report will be published demonstrating the direct insertion and expression of the human gene for alpha-1-antitrypsin in the respiratory epithelium on living animals. Now, the absence of this gene in a human being is a cause of a certain form of chronic obstructive pulmonary disease which affects approximately 30,000 to 40,000 Americans.

So, we view that as some very significant advances which in the future would allow us to hopefully offer a cure for these conditions. But already in our Institute we are investigating the possibility of extending our efforts in gene therapy to other hereditary disorders such as sickle cell disease, Cooley's anemia, hypercholesterolemia, hemophilia, and other cardiovascular conditions. So, these are some examples which I wanted to mention to you because clearly they illustrate the impact of basic research on Clinical advances.

PREPARED STATEMENT Now, as you know, the Institute has numerous prevention and education programs. And I just would like to state in concluding that these programs have a very positive impact, and we are confident that our dissemination strategies to address cardiovascular risk factor reduction, control of sudden heart attack morbidity and mortality, and asthma management and treatment will continue to pay very handsome dividends. And in our view these dividends can be measured both in terms of health care cost reduction, but perhaps more importantly, in terms of better lives for the patients.

Thank you, Mr. Chairman. (The statement follows:)


It is my pleasure to address this committee once again on behalf of the

National Heart, Lung, and Blood Institute (NHLBI).

I have much good news to

report about our quest to reduce the impact of cardiovascular, pulmonary, and

blood diseases on the American people. Indeed, this has been a year when we

have consolidated many gains and moved ahead in a variety of new directions.

Over the years, much attention has been focused upon the use of fundamental

scientific approaches to understand the basis for health and disease.

In the

past, I have reported a number of innovative findings from such disciplines as

cell biology, molecular biology, and genetic engineering that, while not

always of immediate applicability, held great promise for future health

related dividends.

Today, I am pleased to highlight the fulfillment of that

scientific promise in a number of disease areas.

A recent development in asthma research offers a striking example of how

basic understanding has provided a foundation for advances in treatment.

NHLBI-supported basic research on the inflammatory mechanisms underlying

asthma has implicated a class of chemical substances, the leukotrienes, in the

pathobiology of asthma.

The leukotrienes appear to trigger asthma attacks by

causing airways in the lungs to tighten.

Building upon this information,

scientists recently experimented with the use of a newly developed inhibitor

of leukotriene biosynthesis in experimentally induced asthma.

The drugs

significantly blunted asthma attacks without producing the side effects that

can accompany current asthma therapy.

Because this new approach addresses the

basic mechanism underlying asthma, It offers much therapeutic potential for

the millions suffering from this disorder.

As we pursue this line of

research, the National Asthma Education Program will continue its efforts to

disseminate the most up-to-date information about the diagnosis and management

of asthma.

For example, the recent release of the Expert Panel Report on

Asthma Management is expected to greatly facilitate treatment by primary care


Molecular biologists have recently reported the identity of a gene

responsible for familial hypertrophic cardiomyopathy (FHC), one of the most

common causes of sudden death in young athletes.

Knowledge of the mutation

responsible for FHC paves the way for the development of genetic tests for its

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