Pursuant to sections 91-3 and 92-41, Hawaii Revised Statutes (HRS), the State of Hawaii, Department of Health, Children with Special Health Needs Branch will receive written comments and hold a public hearing to receive testimony on its proposed changes to Hawaii Administrative Rules (HAR), Chapter 11-143, “Testing of Newborn Infants for Metabolic and Other Diseases.”
The subjects and purposes of the proposed changes are to:
1. Add a definition for the following term: “cystic fibrosis”.
2. Add the diseases that will be screened in the expanded newborn screening testing panel, effective September 1, 2007. The additional disorder which is being screened is cystic fibrosis.
3. Change the newborn screening fee from $47 to $55 for each newborn screening kit, effective September 1, 2007.
4. Change the effective date of the new fee for each initial newborn screening kit from September 1, 2003 to September 1, 2007.
5. Change the maximum age of the newborn to have a specimen drawn from seven days to three days. Early detection is critical for some of the disorders that are being screened.
6. Delete the dorsal hand vein method of specimen collection. This is not the preferred method of specimen collection.
7. Change the name and title of the specimen collection guidelines from the National Committee for Clinical Laboratory Standards, “Blood Collection on Filter Paper for Neonatal Screening Programs; Second Edition” to Clinical and Laboratory Standards Institute, “Blood Collection on Filter Paper for Newborn Screening Programs; Approved Standard-Fifth Edition.” This is the most recent edition of the specimen collection guidelines that should be followed.
8. Add pulmonary specialist to be available for consultation regarding interpretation of test results and guidelines for care, treatment, and follow-up since Hawaii is now screening for cystic fibrosis.
The proposed changes may also include housekeeping amendments to the rules and amendments, deletions, or additions suggested by oral or written testimony.
All interested persons shall be afforded an opportunity to submit testimony orally or in writing at the time of the hearing. Any persons desiring to give written testimony are asked to submit two (2) copies of their testimony at the hearing, or before the hearing at the address below. Written testimony will also be accepted until 4:30 p.m. on October 30, 2008 at:
Newborn Metabolic Screening Program
Children with Special Health Needs Branch
741 Sunset Avenue
Honolulu, Hawaii 96816
The Public Hearing for the proposed amendments to Chapter 11-143, HAR, will be held on October 30, 2008 at 1:00 p.m. at the following Video Conference Centers:
Keoni Ana Building, 1177 Alakea Street, Room 302, Honolulu, Hawaii
Hilo State Office Building, 75 Aupuni Street, Basement, Hilo, Hawaii
Wailuku Judiciary Building, 2145 Main Street, First Floor, Wailuku, Maui
Lihue State Office Building, 3060 Eiwa Street, Basement, Lihue, Kauai
Kona Health Center, 79-1015 Haukapila Street, Kealakekua, Hawaii
Copies of the proposed rules and documents explaining the proposed changes are available at the following locations on weekdays between the hours of 8:00 a.m. and 4:30 p.m., exclusive of state and federal holidays:
Oahu Newborn Metabolic Screening Program, 741 Sunset Avenue, Honolulu, Hawaii
Hawaii District Health Office, 75 Aupuni Street, Hilo, Hawaii
Kona Health Center, 79-1015 Haukapila Street, Kealakekua, Hawaii
Maui District Health Office, 54 High Street, Wailuku, Hawaii
Kauai District Health Office, 3040 Umi Street, Lihue, Hawaii
The proposed rules will also be mailed or faxed, at no cost upon request, by calling the Newborn Metabolic Screening Program at (808) 733-9069 or writing to Newborn Metabolic Screening Program, 741 Sunset Avenue, Honolulu, Hawaii 96816. The proposed amendments to Chapter 11-143, HAR, are also available via the internet at: http://gen.doh.hawaii.gov/sites/har/admrules/default.aspx. This activity is accessible for individuals with disabilities. For information or to request an auxiliary aid or service, please contact the Newborn Metabolic Screening Program at (808) 733-9069 or Voice/TTY at (808) 733-9055 by October 17, 2008. (SB71149 9/27/08)~