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disseminate cancer prevention and control information and develop culturally sensitive intervention protocols.
Analyses and interpretations of existent cancer burden data sources such as the NCI's SEER Program and cancer mortality data from the National Center for Health Statistics have been used in the development of several new special populations-oriented programs including "Cancer Prevention and clinical Research in Underserved Populations" and "Cancer Control Needs in Older Black Populations." Educational programs targeting tobacco usage by school children in Alaska and Washington, D.C., have been undertaken and brought to successful conclusions. Analytical and interpretative technical assistance has been provided to numerous state and local health officials in addition to officials in other organizational areas of the NCI and NIH.
Currently a cancer mapping program intended to assist local health officials to better target cancer services is being developed. This program is expected to be disseminated in FY 1991 to state and local health officials, cancer centers, and other interested persons.
An initiative to enhance the data-based grants program by providing the grantees with funding and technical assistance for an extended data collection/analysis term is currently being pursued. This is expected to provide a fully integrated program of data collection/analysis, intervention planning and implementation and finally program evaluation.
Several programs have been targeted to underrepresented minority and underserved youth.
The National Cancer Institute is committed to exploring innovative ways of increasing the size and diversity of the pool of scientists in the National Cancer Program in order to have a strong core of researchers. In order to accomplish this goal, NCI must try new ways to stimulate scientific career interests in the children of minority and underserved Americans.
In accordance with our training authority, the NCI initiated a 6-week pilot Science Enrichment Program during the summer of 1990. The goal was to encourage underrepresented minorities and underserved youth to pursue professional careers in the science and/or mathematics fields of research. The 1990 participants included 107 incoming tenth grade students from approximately 26 states (including Alaska, Hawaii, and the District of Columbia) who were interested in science, mathematics, and/or computer science. The students were selected for participation by an Advisory Committee and NCI staff. The ethnic representation of the student participants included 48 African Americans, 33 Hispanics, 12 American Indians, 6 Caucasians, 4 Asian Refugees, 2 Alaska Natives, and 2 Native Hawaiians. There were 49 males and 58 females.
The Ethnic and Low Literacy Diet Guide Project is designed to develop culturally sensitive low literacy nutrition education materials for specific hard-to-reach populations. Seven populations have been identified for this project: American Indian, Alaska Natives, Asian, Blacks, Hispanics, Pacific Islanders, and low literacy Whites. Nutrition materials are
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.
NATIONAL HEART, LUNG, AND BLOOD INSTITUTE
STATEMENT OF DR. CLAUDE LENFANT, DIRECTOR
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.
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:)