As of July 1, 2003, Nevada began screening all newborns for CAH as well as 18 other diseases not screened for before (metabolic ones screened via Tandem Mass Spectrometry).  I just received a telephone call from Gloria Deyhle at the Health District.  The expanded newborn screening was stopped as of this past Monday due to fiscal concerns.  The cost of screening increased from $28 per baby to $60 with the addition of the 19 new tests including CAH, and someone in the administration decided this was too much money.  In other words, we need to get everyone and anyone we can to start sending letters, calling, doing whatever is necessary to get CAH back in!

On September 12, 2003, there will be a meeting of the state Board of Health at the Grand Sawyer Building, 555 East Washington Ave., Las Vegas, to be video conferenced with those in Reno.  (See announcement below.) 

ANYONE who can, PLEASE send an email, fax or letter to the following people asking them to please restart CAH newborn screening:

Yvonne Sylva, Administrator
Dept. of Human Resources
Health Division
505 E. King Street, Rm 201
Carson City, NV 89701-4797
Fax: (775) 684-4211
ysylva@nvhd.state.nv.us

Gloria Deyhle
Dept. of Human Resources
Health Division
505 E. King Street, Rm 201
Carson City, NV 89701-4797
gdeyhle@nvhd.state.nv.us

Bernard H. Feldman, MD, MPH, FAAP
Acting State Health Officer
2831 Queens Courtyard Drive
Las Vegas, NV 89109-1562
bhfeldman@msn.com

Senator Raymond D. Rawson
2217 Scarlet Rose Dr.
Las Vegas, NV 89134-5905
Fax:  702-651-5084
rrawson@sen.state.nv.us

Senator William J. Raggio
P.O. Box 281
Reno, NV 89504-0281
Fax: 775-323-8534
wraggio@sen.state.nv.us

Governor Kenny Guinn
OFFICE OF THE GOVERNOR
555 East Washington Avenue
Suite 5100
Las Vegas, Nevada 89101
Fax: (702) 486-2505

Newborn screening does work - it is my understanding that one Nevada baby was already saved from adrenal crisis/misdiagnosis/possible death by being diagnosed with CAH at birth since the screening began July 1st.  THANK YOU FOR YOUR HELP AND SUPPORT!!

The formal announcement:

NOTICE OF PUBLIC HEARING
Intent to Adopt Regulations

NOTICE IS HEREBY GIVEN that the State Board of Health will hold a public hearing to consider an amendment contained in Nevada Administrative Code (NAC) 440.210.  The hearing is scheduled to begin at 9:00 am on Friday, September 12, 2003, and will be videoconferenced from the Grant Sawyer Building, 555 East Washington Avenue, Room 4412, Las Vegas and to the Legislative Building, 401 South Carson Street, Room 2135, Carson City, Nevada.

The proposed amendment is needed in order to increase the fee charged for the registration of births that support the provision of newborn screening of infants for inborn errors of metabolism and hemoglobinopathies and a full time position to provide medical record review for birth defects.  The substance of the amendment is to increase the current fee of $28 ($32 if paid 30 days after the birth of the child) to $60 ($64 if paid 30 days after the birth of the child)

Adoption of the proposed regulations will result in the following economic impacts:

1. Anticipated effects on the business which NAC 440.210 regulates:
       A.         Adverse:    Providers will have an increased cost for NBS testing.
       B. Beneficial:  Providers will provide enhanced testing and diagnosis for rare        
disorders utilizing the latest technology.
       C. Immediate: Children with rare disorders and birth defects will be detected 
             sooner.
       D.        Long-term: Children with rare disorders will receive early treatment, thus
preventing and/or ameliorating long-term disability associated with these rare
disorders.

2. Anticipated effects on the public:
       A. Adverse:    Families will be charged an additional fee for NBS testing.
       B. Beneficial:  Infants will be screened for an increased number of rare disorders.
       C. Immediate: Infants with rare disorders and birth defects will be detected earlier and treatment will be initiated earlier.
       D. Long-term: Infants and children with rare disorders will receive treatment either preventing or ameliorating the long-term damage these disorders can cause.

3. Estimated cost to the Health Division for enforcement of the proposed regulation:  The estimated cost to the Health Division for enforcement of the proposed regulation is $1,000 per year.             

The proposed regulation will increase the existing fee.
The proposed regulation does not overlap or duplicate any other Nevada state regulations.
The proposed regulation does not overlap or duplicate any federal regulation.

Members of the public may make oral comments at this meeting.  Persons wishing to submit written testimony or documentary evidence in excess of two typed, 8-1/2" x 11" pages must submit the material to Yvonne Sylva, Secretary, State Board of Health, no later than August 28, 2003, at the following address:

Secretary, State Board of Health
Nevada State Health Division
Capitol Complex
    505 E. King Street, Rm. 201
Carson City, Nevada 89701-4797

Written comments, testimony, or documentation evidence in excess of two typed pages will not be accepted at the time of the hearing.  The purpose of this requirement is to allow the Board members adequate time to review the documents.