[Congressional Bills 108th Congress]
[From the U.S. Government Publishing Office]
[H.R. 4872 Introduced in House (IH)]






108th CONGRESS
  2d Session
                                H. R. 4872

  To direct the Secretary of Health and Human Services to establish a 
        retinoblastoma public awareness and prevention program.


_______________________________________________________________________


                    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.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

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

SEC. 2. 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.

SEC. 3. 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:

``SEC. 399O. 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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