[Federal Register Volume 85, Number 184 (Tuesday, September 22, 2020)]
[Notices]
[Pages 59534-59535]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2020-20856]


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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Health Resources and Services Administration


Notice of a Maternal and Child Health Bureau-Initiated 
Supplemental Award to the Immune Deficiency Foundation for the Severe 
Combined Immunodeficiency Screening and Education Program

AGENCY: Health Resources and Services Administration (HRSA), Department 
of Health and Human Services.

ACTION: Notice of a supplemental award.

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SUMMARY: HRSA announces the award of a supplement of approximately 
$3,000,000 to the Immune Deficiency Foundation (IDF) for the Severe 
Combined Immunodeficiency (SCID) Screening and Education program for 
fiscal year (FY) 2020. The supplement will add another year of funding 
to the current recipient, during the period of 08/01/2020-07/31/2021, 
to allow the recipient to provide increased implementation, education, 
and awareness of newborn screening for SCID.

FOR FURTHER INFORMATION CONTACT: Debi Sarkar, Division of Children with 
Special Health Needs, Maternal and Child Health Bureau, HRSA, 5600 
Fishers Lane, Room 18W65, Rockville, MD 20857 Email: [email protected] 
or Phone: (301) 443-0959

SUPPLEMENTARY INFORMATION:
    Intended Recipient of Award: Immune Deficiency Foundation.
    Amount of Non-Competitive Award: Approximately $3,000,000 for 
fiscal year FY 2020.
    Period of Supplemental Funding: 08/01/2020- 07/31/2021.
    CFDA Number: 93.110.
    Authority: Public Health Service Act, Sec.  1109 (42 U.S.C. 300b-
8).
    Justification: The Explanatory Statement accompanying the Further 
Consolidated Appropriations Act, 2020 indicated that: ``Within the 
total for the Heritable Disorders Program, the agreement includes no 
less than $3,000,000 for the third year of a grant to support 
implementation, education, and awareness of newborn screening for 
Severe Combined Immunodeficiency and related disorders.'' Therefore, 
following an objective review, HRSA awarded $3,000,000 to the Immune 
Deficiency Foundation and extended the 2-year period of performance to 
a third year, so that IDF can provide increased implementation, 
education, and awareness of newborn screening for SCID

[[Page 59535]]

    Although all 50 states have legislation to screen for SCID, access 
to pediatric immunology and infectious disease specialists for SCID 
diagnosis and treatment is mostly found in urban areas, posing access 
challenges for families in rural and other medically underserved areas. 
SCID education and awareness resources that are linguistically and 
culturally sensitive are critical for diverse and medically underserved 
families. In addition, long-term follow-up of infants identified 
through SCID newborn screening is critical to obtain clinical outcomes 
data and inform future treatment options. Furthermore, many infants 
detected through newborn screening do not have classical SCID but have 
one of a number of other immune deficiency disorders, so information is 
needed for families and providers on other detected conditions.
    Within the scope of the Notice of Opportunity (HRSA 18-188), 
proposed activities include:
     Develop and implement a plan to engage families and 
treatment centers to obtain follow-up information;
     Develop and disseminate linguistically and culturally 
appropriate education and awareness materials about SCID and other 
immune deficiencies that are identified when screening for SCID;
     Connect families with SCID to pediatric immunology and 
infectious disease specialists, and pediatricians in urban areas;
     Implement telehealth/telemedicine outreach to families 
residing in rural and medically underserved areas; and
     Support an annual SCID meeting that includes state newborn 
screening staff, pediatricians, immunology and infectious diseases 
specialists, and families.

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          Grantee/organization name               Grant No.                  State               FY 2020 funding
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Immune Deficiency Foundation.................               SC1MMD.............................      $3,000,000
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Thomas J. Engels,
Administrator.
[FR Doc. 2020-20856 Filed 9-21-20; 8:45 am]
BILLING CODE 4165-15-P