I 

110TH CONGRESS 

2D SESSION S. 1810 

IN THE HOUSE OF REPRESENTATIVES 

SEPTEMBER 24, 2008 

Referred to the Committee on Energy and Commerce 

AN ACT 

To amend the Public Health Service Act to increase the 

provision of scientifically sound information and support 

services to patients receiving a positive test diagnosis 

for Down syndrome or other prenatally and postnatally 

diagnosed conditions. 

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


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1 SECTION 1. SHORT TITLE. 

2 This Act may be cited as the ‘‘Prenatally and 

3 Postnatally Diagnosed Conditions Awareness Act’’. 

4 SEC. 2. PURPOSES. 

5 It is the purpose of this Act to— 

6 (1) increase patient referrals to providers of key 

7 support services for women who have received a 

8 positive diagnosis for Down syndrome, or other pre9 natally or postnatally diagnosed conditions, as well 

10 as to provide up-to-date information on the range of 

11 outcomes for individuals living with the diagnosed 

12 condition, including physical, developmental, edu13 cational, and psychosocial outcomes; 

14 (2) strengthen existing networks of support 

15 through the Centers for Disease Control and Preven16 tion, the Health Resources and Services Administra17 tion, and other patient and provider outreach pro18 grams; and 

19 (3) ensure that patients receive up-to-date, evi20 dence-based information about the accuracy of the 

21 test. 

22 SEC. 3. AMENDMENT TO THE PUBLIC HEALTH SERVICE 

23 ACT. 

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

25 (42 U.S.C. 280g et seq.) is amended by adding at the end 

26 the following: 


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1 ‘‘SEC. 399R. SUPPORT FOR PATIENTS RECEIVING A POSI2 TIVE DIAGNOSIS OF DOWN SYNDROME OR 

3 OTHER PRENATALLY OR POSTNATALLY DIAG4 NOSED CONDITIONS. 

5 ‘‘(a) DEFINITIONS.—In this section: 

6 ‘‘(1) DOWN SYNDROME.—The term ‘Down syn7 drome’ refers to a chromosomal disorder caused by 

8 an error in cell division that results in the presence 

9 of an extra whole or partial copy of chromosome 21. 

10 ‘‘(2) HEALTH CARE PROVIDER.—The term 

11 ‘health care provider’ means any person or entity re12 quired by State or Federal law or regulation to be 

13 licensed, registered, or certified to provide health 

14 care services, and who is so licensed, registered, or 

15 certified. 

16 ‘‘(3) POSTNATALLY DIAGNOSED CONDITION.— 

17 The term ‘postnatally diagnosed condition’ means 

18 any health condition identified during the 12-month 

19 period beginning at birth. 

20 ‘‘(4) PRENATALLY DIAGNOSED CONDITION.— 

21 The term ‘prenatally diagnosed condition’ means any 

22 fetal health condition identified by prenatal genetic 

23 testing or prenatal screening procedures. 

24 ‘‘(5) PRENATAL TEST.—The term ‘prenatal 

25 test’ means diagnostic or screening tests offered to 

26 pregnant women seeking routine prenatal care that 


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1 are administered on a required or recommended 

2 basis by a health care provider based on medical his3 tory, family background, ethnic background, pre4 vious test results, or other risk factors. 

5 ‘‘(b) INFORMATION AND SUPPORT SERVICES.— 

6 ‘‘(1) IN GENERAL.—The Secretary, acting 

7 through the Director of the National Institutes of 

8 Health, the Director of the Centers for Disease Con9 trol and Prevention, or the Administrator of the 

10 Health Resources and Services Administration, may 

11 authorize and oversee certain activities, including the 

12 awarding of grants, contracts or cooperative agree13 ments to eligible entities, to— 

14 ‘‘(A) collect, synthesize, and disseminate 

15 current evidence-based information relating to 

16 Down syndrome or other prenatally or 

17 postnatally diagnosed conditions; and 

18 ‘‘(B) coordinate the provision of, and ac19 cess to, new or existing supportive services for 

20 patients receiving a positive diagnosis for Down 

21 syndrome or other prenatally or postnatally di22 agnosed conditions, including— 

23 ‘‘(i) the establishment of a resource 

24 telephone hotline accessible to patients re25 ceiving a positive test result or to the parVerDate Aug 31 2005 21:46 Sep 24, 2008 Jkt 069200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\S1810.RFH S1810

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1 ents of newly diagnosed infants with Down 

2 syndrome and other diagnosed conditions; 

3 ‘‘(ii) the expansion and further devel4 opment of the National Dissemination 

5 Center for Children with Disabilities, so 

6 that such Center can more effectively con7 duct outreach to new and expecting par8 ents and provide them with up-to-date in9 formation on the range of outcomes for in10 dividuals living with the diagnosed condi11 tion, including physical, developmental, 

12 educational, and psychosocial outcomes; 

13 ‘‘(iii) the expansion and further devel14 opment of national and local peer-support 

15 programs, so that such programs can more 

16 effectively serve women who receive a posi17 tive diagnosis for Down syndrome or other 

18 prenatal conditions or parents of infants 

19 with a postnatally diagnosed condition; 

20 ‘‘(iv) the establishment of a national 

21 registry, or network of local registries, of 

22 families willing to adopt newborns with 

23 Down syndrome or other prenatally or 

24 postnatally diagnosed conditions, and links 

25 to adoption agencies willing to place babies 


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1 with Down syndrome or other prenatally or 

2 postnatally diagnosed conditions, with fam3 ilies willing to adopt; and 

4 ‘‘(v) the establishment of awareness 

5 and education programs for health care 

6 providers who provide, interpret, or inform 

7 parents of the results of prenatal tests for 

8 Down syndrome or other prenatally or 

9 postnatally diagnosed conditions, to pa10 tients, consistent with the purpose de11 scribed in section 2(b)(1) of the Prenatally 

12 and Postnatally Diagnosed Conditions 

13 Awareness Act. 

14 ‘‘(2) ELIGIBLE ENTITY.—In this subsection, the 

15 term ‘eligible entity’ means— 

16 ‘‘(A) a State or a political subdivision of a 

17 State; 

18 ‘‘(B) a consortium of 2 or more States or 

19 political subdivisions of States; 

20 ‘‘(C) a territory; 

21 ‘‘(D) a health facility or program operated 

22 by or pursuant to a contract with or grant from 

23 the Indian Health Service; or 

24 ‘‘(E) any other entity with appropriate ex25 pertise in prenatally and postnatally diagnosed 


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1 conditions (including nationally recognized dis2 ability groups), as determined by the Secretary. 

3 ‘‘(3) DISTRIBUTION.—In distributing funds 

4 under this subsection, the Secretary shall place an 

5 emphasis on funding partnerships between health 

6 care professional groups and disability advocacy or7 ganizations. 

8 ‘‘(c) PROVISION OF INFORMATION TO PROVIDERS.— 

9 ‘‘(1) IN GENERAL.—A grantee under this sec10 tion shall make available to health care providers of 

11 parents who receive a prenatal or postnatal diag12 nosis the following: 

13 ‘‘(A) Up-to-date, evidence-based, written 

14 information concerning the range of outcomes 

15 for individuals living with the diagnosed condi16 tion, including physical, developmental, edu17 cational, and psychosocial outcomes. 

18 ‘‘(B) Contact information regarding sup19 port services, including information hotlines 

20 specific to Down syndrome or other prenatally 

21 or postnatally diagnosed conditions, resource 

22 centers or clearinghouses, national and local 

23 peer support groups, and other education and 

24 support programs as described in subsection 

25 (b)(2). 


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1 ‘‘(2) INFORMATIONAL REQUIREMENTS.—Infor2 mation provided under this subsection shall be— 

3 ‘‘(A) culturally and linguistically appro4 priate as needed by women receiving a positive 

5 prenatal diagnosis or the family of infants re6 ceiving a postnatal diagnosis; and 

7 ‘‘(B) approved by the Secretary. 

8 ‘‘(d) REPORT.—Not later than 2 years after the date 

9 of enactment of this section, the Government Account10 ability Office shall submit a report to Congress concerning 

11 the effectiveness of current healthcare and family support 

12 programs serving as resources for the families of children 

13 with disabilities.’’. 

Passed the Senate September 23 (legislative day, 

September 17), 2008. 

Attest: NANCY ERICKSON, 

Secretary. 


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