I 108th CONGRESS 2d Session H. R. 4872 IN THE HOUSE OF REPRESENTATIVES July 20, 2004 Mr. Meeks of New York introduced the following bill; which was referred to the Committee on Energy and Commerce A BILL To direct the Secretary of Health and Human Services to establish a retinoblastoma public awareness and prevention program.

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Short title

This Act may be cited as the Retinoblastoma Awareness and Prevention Act of 2004.

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Findings

Congress finds the following: (1)Retinoblastoma is the most prevalent form of eye cancer among young children and is the third most common cancer affecting children. (2)Although the disease is curable, it is almost always fatal when left untreated. As such, early detection of retinoblastoma is essential to avoid dangerous and lengthy procedures such as enucleation of either one or both eyes and potential spread of the cancer throughout the rest of the body. (3)Of all children who are diagnosed with retinoblastoma, 90 percent are the first ones in their family to develop the disease. As such, many parents are slow to react to the symptoms because they are unfamiliar with the disease. (4)The cancer originates as a tumor within the retina, the light sensitive layer of the eye. (5)Although the exact cause of retinoblastoma is unclear, there is a connection between the disease and an abnormality in chromosome 13 in which a piece of the chromosome is nonfunctional or missing. Furthermore, there is a connection between children who are conceived through in vitro fertilization and a heightened incidence of retinoblastoma. This new realization raises the issue of whether there are more unknown abnormalities and other potential dangers associated with in vitro fertilization treatment. (6)Because many children do not suffer from any symptoms, retinoblastoma can be a secret killer. However, common symptoms of retinoblastoma are crossed eyes, poor vision, painful red eyes, inflammation of the tissue surrounding the eye, protrusion of the eyeball, and vitreous hemorrhaging or bleeding around the eye. The majority of children who suffer from retinoblastoma have a white pupil reflex, known as the cat’s eye reflex, rather than a black pupil or red reflex. (7)Once a patient has been diagnosed with retinoblastoma, the physician must determine the extent of the disease in the eye and whether the disease has spread outside the eye in a process called staging. There are three primary forms of retinoblastoma. In its intraocular form, the cancer occurs in either one or both eyes but it has not spread to surrounding tissues and organs in the rest of the body. In its extraocular form, the cancer has spread to tissues around the eye or to other parts of the body. If the retinoblastoma is recurrent, the cancer has come back to the eye or continues to grow after it has been treated.

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Retinoblastoma awareness and prevention program

Part P of title III of the Public Health Service Act (42 U.S.C. 280g et seq.) is amended by adding at the end the following new section:

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Retinoblastoma awareness and prevention program

(a)

Awareness and prevention program

The Secretary shall establish a retinoblastoma awareness and prevention program that shall include— (1)public and community awareness programs concerning the prevention and identification of retinoblastoma and the provision of services for children, adolescents, and adults with retinoblastoma; (2)the development and placement of public service announcements to educate the public about retinoblastoma; and (3)the development of strategies to educate parents about retinoblastoma, early warning signs, and risk factors based on the best available medical information and to encourage parents to discuss retinoblastoma with their child’s physician. (b)

Grants and technical assistance

The Secretary may award grants, enter into cooperative agreements and contracts, and provide technical assistance to private and public entities for the purpose of carrying out subsection (a).

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