I 

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.

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled,

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Retinoblastoma Aware5 ness and Prevention Act of 2004’’. 

6 SEC. 2. FINDINGS. 

7 Congress finds the following: 

8 (1) Retinoblastoma is the most prevalent form 

9 of eye cancer among young children and is the third 

10 most common cancer affecting children. 
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1 (2) Although the disease is curable, it is almost 

2 always fatal when left untreated. As such, early de3 tection of retinoblastoma is essential to avoid dan4 gerous and lengthy procedures such as enucleation 

5 of either one or both eyes and potential spread of 

6 the cancer throughout the rest of the body. 

7 (3) Of all children who are diagnosed with 

8 retinoblastoma, 90 percent are the first ones in their 

9 family to develop the disease. As such, many parents 

10 are slow to react to the symptoms because they are 

11 unfamiliar with the disease. 

12 (4) The cancer originates as a tumor within the 

13 retina, the light sensitive layer of the eye. 

14 (5) Although the exact cause of retinoblastoma 

15 is unclear, there is a connection between the disease 

16 and an abnormality in chromosome 13 in which a 

17 piece of the chromosome is nonfunctional or missing. 

18 Furthermore, there is a connection between children 

19 who are conceived through in vitro fertilization and 

20 a heightened incidence of retinoblastoma. This new 

21 realization raises the issue of whether there are 

22 more unknown abnormalities and other potential 

23 dangers associated with in vitro fertilization treat24 ment. 
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1 (6) Because many children do not suffer from 

2 any symptoms, retinoblastoma can be a secret killer. 

3 However, common symptoms of retinoblastoma are 

4 crossed eyes, poor vision, painful red eyes, inflamma5 tion of the tissue surrounding the eye, protrusion of 

6 the eyeball, and vitreous hemorrhaging or bleeding 

7 around the eye. The majority of children who suffer 

8 from retinoblastoma have a white pupil reflex, 

9 known as the cat’s eye reflex, rather than a black 

10 pupil or red reflex. 

11 (7) Once a patient has been diagnosed with 

12 retinoblastoma, the physician must determine the ex13 tent of the disease in the eye and whether the dis14 ease has spread outside the eye in a process called 

15 staging. There are three primary forms of 

16 retinoblastoma. In its intraocular form, the cancer 

17 occurs in either one or both eyes but it has not 

18 spread to surrounding tissues and organs in the rest 

19 of the body. In its extraocular form, the cancer has 

20 spread to tissues around the eye or to other parts 

21 of the body. If the retinoblastoma is recurrent, the 

22 cancer has come back to the eye or continues to 

23 grow after it has been treated. 
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1 SEC. 3. RETINOBLASTOMA AWARENESS AND PREVENTION 

2 PROGRAM. 

3 Part P of title III of the Public Health Service Act 

4 (42 U.S.C. 280g et seq.) is amended by adding at the end 

5 the following new section: 

6 ‘‘SEC. 399O. RETINOBLASTOMA AWARENESS AND PREVEN7 TION PROGRAM. 

8 ‘‘(a) AWARENESS AND PREVENTION PROGRAM.—The 

9 Secretary shall establish a retinoblastoma awareness and 

10 prevention program that shall include—

11 ‘‘(1) public and community awareness programs 

12 concerning the prevention and identification of 

13 retinoblastoma and the provision of services for chil14 dren, adolescents, and adults with retinoblastoma; 

15 ‘‘(2) the development and placement of public 

16 service announcements to educate the public about 

17 retinoblastoma; and 

18 ‘‘(3) the development of strategies to educate 

19 parents about retinoblastoma, early warning signs, 

20 and risk factors based on the best available medical 

21 information and to encourage parents to discuss 

22 retinoblastoma with their child’s physician. 

23 ‘‘(b) GRANTS AND TECHNICAL ASSISTANCE.—The 

24 Secretary may award grants, enter into cooperative agree25 ments and contracts, and provide technical assistance to 
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1 private and public entities for the purpose of carrying out 

2 subsection (a).’’.

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