The Louisiana Genetic
Diseases Program:
History and Organizational Structure
The Louisiana Genetic Diseases Program (LaGDP) was established in 1981 through a Federal grant. Its purpose was fourfold: (1) to make genetic evaluation and counseling accessible to Louisiana residents in all areas of the state, (2) to improve the coordination of the newborn screening program, (3) to increase community awareness of genetic services and their benefits, and (4) to strengthen linkages between genetic services providers. The Federal grant ended in 1985. At that time, funding was secured through the Maternal and Child Health (MCH) Block Grant Progam, administered by the Health Resources and Services Administration (HRSA). A mix of self-generated, Medicaid, and state funding was added. The Hemophilia Program (in 1986) and the Lead Screening Program (in 1990) became units under the LaGDP.
Currently the sub-programs of the LaGDP are:
- Newborn Screening and Follow-up (PKU, congenital hypothyroidism, sickle cell disease, biotinidase deficiency, and galactosemia)
- Clinical Genetics Services (regional genetics clinics)
- Hemophilia Program
- Lead Poisoning Prevention Program
Newborn Screening and Follow-Up Sub-Program
Mission
To ensure the early detection and
treatment of newborns with phenylketonuria
(PKU), congenital hypothyroidism,
biotinidase deficiency, and sickle
cell disease.
Early detection coupled with timely enrollment in specialized care prevents mental retardation caused by PKU and congenital hypothyroidism, seizures and other neurological sequelae caused by biotinidase deficiency, and life-threatening infections in the first few years of life due to sickle cell disease.
In accordance with state law (R.S.40:12.99.1, et seq, and L.A.C., title 48, Chapter 63), all newborns in the state are screened for the four diseases listed above before discharge from the hospital.
Each year, about two patients with PKU are detected, 10 to 12 with congenital hypothyroidism, 1 to 2 with biotinidase deficiency, and 75-85 with sickle cell disease. The number of cases for which ongoing care is coordinated by the LaGDP is 60 for PKU and 375 for sickle cell disease.
Genetics
Clinical Services Sub-Program
Mission
To ensure that genetic evaluation
and counseling is available and
accessible to individuals in all
regions of the state through genetics
clinics at eight OPH sites and five
hospital sites in the southern region
of the state.
There were approximately 600 families seen in genetics clinics last year.
Conditions for referral to a genetics clinic ("Is It Genetic?"), together with a list of Genetics Clinic sites are provided elsewhere in this section of Genetics and Louisiana Families.
Hemophilia
Sub-Program
Mission
To ensure that medical care for
patients with hemophilia is not
compromised by the high cost associated
with the care of this disease.
This sub-program, partnership with the Louisiana Comprehensive Hemophilia Care Center and the State Pharmacy, dispenses blood clotting pharmaceutical products to patients with hemophilia and other blood clotting diseases. Optimum patient care is provided by a multidisciplinary team at the Louisiana Comprehensive Hemophilia Care Center.
Lead Poisoning
Prevention Sub-Program
Mission
To identify and prevent lead poisoning
in high-risk communities and to
provide opportunities for communities,
researchers, and decision makers
to collaborate on programs that
will promote a lead-free environment
in order to improve health, housing,
education, and quality of life.
The program will identify high-risk areas and target efforts and resources to reduce the number of children with elevated blood lead levels in Louisiana.
To
Learn More
For more information on the Louisiana
Genetic Diseases Program and its
sub-programs, visit the LaGDP website
at http://oph.dhh.state.la.us/geneticdisease/index.html.
About the
Author
Charles Myers, MSW, is manager of
the Louisiana Genetics Diseases
Program. He is a member of the Executive
Planning Board of the Center for
Acadiana Genetics and Hereditary
Health Care.
Contact
the Author
Charlie Myers, MSW
Louisiana Genetic Diseases Program
1450 L&A Road
Metairie, LA 70001
Phone: (504) 219-4413
Fax: (504) 219-4452
Email: charlie@dhh.la.gov
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