Newborn Screen available at all or thinking it wasn't necessary? TEXAS and ARIZONA are the two worst states with NBS... we should'nt be removing primary screening or having parents who aren't educated about why they need or would want newborn screen an opt in option. We should be EXPANDING NBS so parents like me, don't have to go thru years of hell... or worse, lose their child!!
This is an overview of the petition:
OVERVIEW
Newborn screening is under attack in Texas! Two bills are in pending in the Texas legislature that will radically change the way newborn screening is conducted. We need stop these bills to help save babies' lives! Please sign, even if you don't live in Texas.
Newborn screening is a test done on every baby in the country to test for certain diseases that result in death, severe mental retardation, disability or trauma if not detected early in life and treated. A few drops of blood are taken from the baby's heel shortly after birth and sent to states' public health laboratories for testing. These tests save the lives of thousands of babies nation-wide every year.
HB 2110 will make Texas the only state in the country to require parents to opt-in for screening services. There is no provision requiring education for prospective parents about newborn screening. This new opt-in policy and the lack of prenatal education about newborn screening will result in children missing the screening tests and suffering unnecessarily, becoming disabled, or dying.
HB 411 (and its companion bill in the Senate, SB 507) contains provisions that will make it very difficult for the state to add in diseases to the newborn screening program. Research is now occurring for muscular dystrophy, lysosomal storage disorders, certain ataxias, SCID and many more diseases. These babies deserve saving too! This bill needs amending to add provisions for prenatal education about newborn screening and state storage and use of leftover samples to save more babies' lives.
Newborn screening is an amazing program that saves countless tiny lives every year. Don't let Texas' babies suffer! Sign this petition and tell the Texas legislators to put babies first!
Sign this petition and let them know you oppose HB 2110, HB 411 and SB 507!
Please forward to friends and family, and post this link on Facebook and Twitter!
AGAIN REMEMBER, REILEY'S PRIMARY CONDITION CAN BE FOUND ON EXPANDED NEWBORN SCREEN!!! Think of all the money that all the tax payers pay to care for MY DAUGHTER because of a simple blood test not performed... THINK ABOUT THAT!!! Think about so many young mothers and fathers who don't know what it means to have this done and opting out of it... mind boggling the expense so many people could be looking at if more children who have rare diseases are not caught at birth thus throwing them into the life of doctors, therapies, specialists, DDD/ALTCS (Medicaid) parents or parent losing job, needing state aid, food stamps, insurance, welfare, whatever all because of an opt in option and YOU are forced to pay the financial burden of that and the parents and child are faced with the lives they will now have because early intervention was not in place.
I mean seriously, think about how much emphasis is put on prenatal care for a healthy baby, yet the second the baby is born that goes out the window?
Sorry for the rant, but my life, R's life, our families life is what drives this rant... and I don't want anyone else to face it, by skipping a SIMPLE heel stick!!
Newborn screening is a test done on every baby in the country to test for certain diseases that result in death, severe mental retardation, disability or trauma if not detected early in life and treated. A few drops of blood are taken from the baby's heel shortly after birth and sent to states' public health laboratories for testing. These tests save the lives of thousands of babies nation-wide every year.
HB 2110 will make Texas the only state in the country to require parents to opt-in for screening services. There is no provision requiring education for prospective parents about newborn screening. This new opt-in policy and the lack of prenatal education about newborn screening will result in children missing the screening tests and suffering unnecessarily, becoming disabled, or dying.
HB 411 (and its companion bill in the Senate, SB 507) contains provisions that will make it very difficult for the state to add in diseases to the newborn screening program. Research is now occurring for muscular dystrophy, lysosomal storage disorders, certain ataxias, SCID and many more diseases. These babies deserve saving too! This bill needs amending to add provisions for prenatal education about newborn screening and state storage and use of leftover samples to save more babies' lives.
Newborn screening is an amazing program that saves countless tiny lives every year. Don't let Texas' babies suffer! Sign this petition and tell the Texas legislators to put babies first!
Sign this petition and let them know you oppose HB 2110, HB 411 and SB 507!
Please forward to friends and family, and post this link on Facebook and Twitter!
AGAIN REMEMBER, REILEY'S PRIMARY CONDITION CAN BE FOUND ON EXPANDED NEWBORN SCREEN!!! Think of all the money that all the tax payers pay to care for MY DAUGHTER because of a simple blood test not performed... THINK ABOUT THAT!!! Think about so many young mothers and fathers who don't know what it means to have this done and opting out of it... mind boggling the expense so many people could be looking at if more children who have rare diseases are not caught at birth thus throwing them into the life of doctors, therapies, specialists, DDD/ALTCS (Medicaid) parents or parent losing job, needing state aid, food stamps, insurance, welfare, whatever all because of an opt in option and YOU are forced to pay the financial burden of that and the parents and child are faced with the lives they will now have because early intervention was not in place.
I mean seriously, think about how much emphasis is put on prenatal care for a healthy baby, yet the second the baby is born that goes out the window?
Sorry for the rant, but my life, R's life, our families life is what drives this rant... and I don't want anyone else to face it, by skipping a SIMPLE heel stick!!
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