When our son Greyson died on Dec. 12, 2008 one week before his 1st birthday, my wife Nicole and I decided that we wanted his death to stand for something. At first our goal was to make sure that no other baby born in Texas was allowed to die from Krabbes Disease because of the lack of newborn screening. After researching newborn screening in Texas, we were shocked to find that Texas was in the bottom 5 states in the nation based on the number of diseases that infants are screened for at birth. The recognized authority, the American College of Medical Genetics, (ACMG) breaks diseases into two panels, the “Core 29” panel of 29 diseases that are classified as Mandatory for testing and the “Secondary Panel” of 25 additional diseases. This secondary panel consists of diseases that are deemed significant and, in most cases, can at least be controlled if detected before onset of systems. Unfortunately, at this time, Krabbes Disease is not included on any of the ACMG panels due to insufficient research of screening and treatment.
At this time, the state of Texas tests for only 27 of the Core 29 panel and none of the secondary panel. Despite legislation in 2005 with HB 790, Texas does not test infants for Cystic Fibrosis and only tests for select diseases, despite having the potential for screening for an additional 20 diseases with the technology presently owned by the state lab. For some reason the equipment was programmed to screen for a modified panel instead of the full panel that the Tandem Mass Spectrometry Machines are capable of. No review board or advisory panel was created to ensure that the state remained current to the ACMG’s recommendations or that current mandates from the Texas Legislature are being met. Nicole and I realized that much had to be done to the Texas newborn screening program to fix a broken system, a system that is failing babies, approximately 150 babies each year.
That’s how many babies that are born with one of the diseases not tested for in Texas each year, 150!
Greyson’s Law (HB 1795) seeks to improve the Texas newborn screening program in two ways.
First; it appropriates $790,000 dollars to pay for reprogramming of the Tandem Mass Spectrometry Machines and training for State Lab employees to add 20 diseases to the present screening program using the same samples (blood spots on filter paper) already collected from infants born in Texas hospitals within the first 24 hours of life. It just increases the number of diseases that are detectable by the machines at the state lab when testing is done. Some of the funds are also utilized by the Dept. of Health to ensure comprehensive case management by nurses on staff to ensure that each child receives all care and treatment necessary to ensure the best quality of life possible for each child based on their diagnosis.
Early detection also insures that precious time, resources and money will not be wasted on differential diagnoses. The Honorable Representative John Zarwas, district 28, who is also a medical doctor, stated in the hearing of the Public Health Committee, that because 54% of Texas babies are born into the Medicaid system, HB 1795 “saves so much money for the state, it shouldn’t even have a fiscal note attached to it.”
Second; HB 1795 creates an Advisory Committee made up of specialists in new born screening, consumers, representatives from the State Lab and the Texas Hospital Association to assess and make recommendations for additions to the screening program to keep Texas proactive in the protection of Texas Infants. This advisory committee is based on the system used by the state of Minnesota which leads the nation in new born screening with 67 screened diseases. I am most proud of this portion if Greyson’s Law. As we all know, new technologies and testing procedures are being developed every day. It is very important that these new methods and technologies be assessed and vetted to determine which will make to best use of State resources to add diseases to the Newborn screening program. It is my hope that, after the addition of Krabbes’s Disease to the secondary panel by the AMCG, Texas, through the Advisory Committee, will also screen for the disease that took my son’s life.
On Friday June 19, 2009 the Honorable Gov. Rick Perry signed HB 1795 establishing Greyson’s Law, effective September of 2009.
William C. Morris
Greyson’s Dad
At this time, the state of Texas tests for only 27 of the Core 29 panel and none of the secondary panel. Despite legislation in 2005 with HB 790, Texas does not test infants for Cystic Fibrosis and only tests for select diseases, despite having the potential for screening for an additional 20 diseases with the technology presently owned by the state lab. For some reason the equipment was programmed to screen for a modified panel instead of the full panel that the Tandem Mass Spectrometry Machines are capable of. No review board or advisory panel was created to ensure that the state remained current to the ACMG’s recommendations or that current mandates from the Texas Legislature are being met. Nicole and I realized that much had to be done to the Texas newborn screening program to fix a broken system, a system that is failing babies, approximately 150 babies each year.
That’s how many babies that are born with one of the diseases not tested for in Texas each year, 150!
Greyson’s Law (HB 1795) seeks to improve the Texas newborn screening program in two ways.
First; it appropriates $790,000 dollars to pay for reprogramming of the Tandem Mass Spectrometry Machines and training for State Lab employees to add 20 diseases to the present screening program using the same samples (blood spots on filter paper) already collected from infants born in Texas hospitals within the first 24 hours of life. It just increases the number of diseases that are detectable by the machines at the state lab when testing is done. Some of the funds are also utilized by the Dept. of Health to ensure comprehensive case management by nurses on staff to ensure that each child receives all care and treatment necessary to ensure the best quality of life possible for each child based on their diagnosis.
Early detection also insures that precious time, resources and money will not be wasted on differential diagnoses. The Honorable Representative John Zarwas, district 28, who is also a medical doctor, stated in the hearing of the Public Health Committee, that because 54% of Texas babies are born into the Medicaid system, HB 1795 “saves so much money for the state, it shouldn’t even have a fiscal note attached to it.”
Second; HB 1795 creates an Advisory Committee made up of specialists in new born screening, consumers, representatives from the State Lab and the Texas Hospital Association to assess and make recommendations for additions to the screening program to keep Texas proactive in the protection of Texas Infants. This advisory committee is based on the system used by the state of Minnesota which leads the nation in new born screening with 67 screened diseases. I am most proud of this portion if Greyson’s Law. As we all know, new technologies and testing procedures are being developed every day. It is very important that these new methods and technologies be assessed and vetted to determine which will make to best use of State resources to add diseases to the Newborn screening program. It is my hope that, after the addition of Krabbes’s Disease to the secondary panel by the AMCG, Texas, through the Advisory Committee, will also screen for the disease that took my son’s life.
On Friday June 19, 2009 the Honorable Gov. Rick Perry signed HB 1795 establishing Greyson’s Law, effective September of 2009.
William C. Morris
Greyson’s Dad
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