DEPARTMENT OF HEALTH AND HUMAN SERVICES
NATIONAL INSTITUTES OF HEALTH

Witness appearing before the
House Subcommittee on Labor-HHS-Education Appropriations

Paul A. Sieving, M.D., Ph.D.
Director, National Eye Institute

April 16, 2002

Mr. Chairman and Members of the Committee:

Eye disease, a major public health problem in the United States, causes significant suffering, disability, loss of productivity, and diminished quality of life for millions of people.

The National Eye Institute (NEI), one of the Federal government's National Institutes of Health, is addressing this public health problem through programs of biomedical research, disease prevention, and health promotion. The NEI is the lead Federal agency addressing the eye health education needs of our nation. Institute activities in health promotion and disease prevention represent a natural extension of its support of vision research, in which research results are translated into practical applications for health care professionals, patients, and the public.

In 1991, in response to a Congressional mandate, the National Eye Institute established the National Eye Health Education Program (NEHEP). The focus of NEHEP is on health education programs that encourage the prevention of blindness through early detection and treatment of glaucoma and diabetic eye disease, and the appropriate treatment for low vision. The NEHEP is coordinated by the National Eye Institute in partnership with over 65 national organizations representing professional associations; voluntary, civic, and fraternal organizations; and other government agencies, such as the Administration on Aging, the Centers for Disease Control and Prevention (CDC), and the Indian Health Service. Through this partnership, the NEHEP multiplies its efforts in disseminating information to the public, and provides a collaborative forum for organizations to develop blindness prevention programs and implement them through their networks. The NEHEP staff also provides technical assistance to the Partnership and other organizations in developing community-based education efforts.

The strength of the NEHEP is its ability to "fill-in-the gaps" by conducting the research necessary for program development, implementation, and evaluation. This research includes literature reviews; focus groups with the target audiences; interviews with community leaders; pretesting of messages and materials; and program evaluation. The NEHEP represents an excellent example of a public-private partnership where resources are shared and not duplicated and local agencies and programs can direct their resources towards what they do best -- providing services.

The National Eye Health Education Program currently includes three education programs.

Glaucoma is a group of diseases that damages the eye's optic nerve and can lead to blindness. It is estimated that more than two million Americans have glaucoma, and another two million are unaware that they have the disease. Glaucoma is a leading cause of blindness in people over age 60, African Americans over age 40, and people with a family history of the disease.

The glaucoma education program stresses the importance of a dilated eye examination at least once every two years for people at higher risk. The program involves community outreach programs; comprehensive public service announcements; and the sponsorship of special awareness activities in January. A program theme for 2002 highlights a new Medicare benefit for glaucoma detection, which became effective in January. The Medicare benefit includes coverage of a comprehensive dilated eye examination for people at highest risk of developing the disease, including African Americans over age 50, people with diabetes, and those with a family history. This new awareness activity is being coordinated with other Federal agencies, including the Centers for Medicare and Medicaid Services.

Diabetic eye disease is a term for the visual complications that can result from diabetes. These complications include diabetic retinopathy, a potentially blinding condition that damages tiny blood vessels in the retina. Nearly half of all people with diabetes will develop some degree of diabetic retinopathy during their lifetime. Because of NEI-sponsored research, people with advanced diabetic retinopathy can reduce their risk of blindness by 90 percent with timely laser surgery and appropriate follow-up care.

More than 10 million people have been diagnosed with diabetes. Many people who could benefit from laser treatment for their disease do not receive it. Data from the National Health Interview Survey shows that half of all people with diabetes do not receive annual dilated eye exams. This highlights the need to educate people with diabetes about the importance of a dilated eye examination at least once a year.

The NEHEP uses several strategies for its diabetic eye disease program. These include public service announcements; education resources for health professionals; and specific cultural materials intended to reach Hispanics with diabetes. The NEHEP works closely with the CDC's state-based Diabetes Control Programs and the combined National Institute of Diabetes and Digestive and Kidney Diseases and CDC National Diabetes Education Program to coordinate outreach strategies for diabetic eye disease.

Low vision is a visual impairment, not correctable by standard glasses, contact lenses, medicine, or surgery, that interferes with a person's ability to perform everyday activities. Low vision affects nearly one in 20 Americans -- primarily the growing population over age 65 and other higher risk groups, including Hispanics and African Americans, who are likely to develop low vision at an earlier age. The program increases awareness about the services available to help people experiencing vision loss. The program also empowers people with low vision to talk with their eye care professional about how vision rehabilitation can help them make the most of their remaining sight.

Among the program's features are educational materials in English and Spanish, public service announcements, and THE EYE SITE, a traveling exhibit on low vision for shopping malls. The NEHEP is collaborating with the Federal government's Independent Living Program, conducted by the Rehabilitation Services Administration within the U.S. Department of Education. The NEHEP also works closely with voluntary health organizations to ensure that outreach strategies on low vision are coordinated and resources are not duplicated.

Outreach to select populations is part of the National Eye Institute's educational mandate. Recent reports show that disparities in access to health care continue to be widespread. Certain challenges exist in developing outreach programs to select populations. NEHEP materials must be culturally and linguistically appropriate and messages must resonate with the target population. To accomplish this task, we explore strategies and methods that are most effective for reaching specific populations. We have established working groups of experts that represent the African American and Hispanic communities. We will soon be convening a working group to address the eye health needs for American Indian/Alaska Native communities. By working with key stakeholders, the NEI gets input and guidance on the best methods and materials for reaching these select populations and increasing awareness about the importance of eye health among these communities. We are working hard to raise awareness about the importance of eye health and ensure that our healthy vision message is accessible to all Americans.

For the first time, vision objectives have been included in Healthy People 2010, a national initiative to prevent disease and promote health issues sponsored by the U.S. Department of Health and Human Services. The addition of these objectives is important because they place vision on the public health agenda.

The Healthy People 2010 vision objectives address visual impairment due to eye disease and refractive error; regular eye examinations for children and adults; vision screening for pre-school children; injury prevention; and vision rehabilitation. The National Eye Institute is the lead agency for the vision objectives and coordinates a Working Group -- 25 members representing the vision community that assists in planning activities. Activities include development of a vision consortium that will address strategies to achieve implementation of the vision objectives; a toolkit that provides resources for each objective; a web site that includes data, links to vision-related organizations, and other valuable information; and an electronic listserv that allows participants to exchange information.

In addition, the National Eye Institute disseminates research results that impact public health. An example of this was the results released last October of a major clinical trial that showed that high levels of antioxidants and zinc reduce the risk of advanced age-related macular degeneration (AMD) and the risk of vision loss caused by advanced AMD. Age-related macular degeneration is a condition that affects the macula, the part of the retina responsible for sharp central vision. These findings are exciting because, for people at high risk for developing advanced AMD, the nutrients are the first effective treatment to slow the progression of the disease.

The National Eye Institute coordinated a national and locally-based dissemination process whereby the public was informed of these results through broad print, radio, television, and Internet coverage. Over 174 million people had the opportunity to hear or read about these clinical findings. A VISION Public Information Network for Eye Institutes and Departments of Ophthalmology and Schools and Colleges of Optometry, coordinated by the National Eye Institute, assisted in disseminating the AREDS results. This network has a critical role in educating the public about the benefits of vision research, and works collaboratively with the Institute in disseminating eye health information across the nation.

Blindness and visual impairment from most eye diseases and disorders can be reduced with early detection and treatment. Most eye diseases, however, lack symptoms until vision is lost. Vision that is lost cannot be restored. Therefore, early intervention through regular dialed eye exams needs to be emphasized. Health education programs directed at groups at higher risk for eye diseases and disorders are essential in preventing blindness and visual impairments. The incorporation of vision into health education programs can be beneficial to participants and to agencies seeking to provide quality care to their clients.

The National Eye Health Education Program and Healthy People 2010 have expanded the National Eye Institute's role and given it a more effective voice in bringing the importance of proper vision and eye health to the broader public health community.