We just made it home from Austin, it was a hectic morning. We stayed the night in Austin last nite so that we wouldn't have to rush to get the boys and ourselves ready and still brave the Austin morning traffic. The morning progressed slowly, we had our first committee hearing for HB 1795. The hearing was before the Public Health Services Committee. First the we were told that usually only 5-7 members of the Committee usually show up for the hearing.
It is a tribute to all of you that have contacted the members that ALL but 2 of the 11 members were present for the hearing on HB 1795! Thanks to everyone that emailed the members!
Second, the hearing on HB 1795 lasted for over 2 hours! The KXAN News 8 (thanks Jenny) had a crew there taping the hearing. And just as we thought, the members were totally ignorant that the new born screening program falls so short of the mark. They couldn't believe that HB 1795 isn't even about testing for Krabbes Disease, that we are pushing for screening for other diseases to protect infants from harm.
I want to send out special thanks to Rep Paula Pierson and Committee Member Rep. Zerwas, MD. for their very skilled aid in driving home to the Committee members that HB 1795 will SAVE Texas millions in just medical bills incurred while trying to diagnose these children when a new born screen could have in the first days of life.
Please visit Nicole's Blog, she was awesome! I am so proud! She has her testimony up for everyone to read. The archive of the hearing can be seen by going to http://www.house.state.tx.us/committees/list81/410.htm
and clicking on the quick link for broadcast archives for today's date HB 1795.
I just wanted to put my testimony in this blog so anyone interested can read it.
Honorable Committee Members,
My name is William Morris and I am here today not only as a concerned parent but as a Pediatric nurse with 13 years of experience. I am asking for your help in protecting our most precious resource in the State of Texas, our children….. Every year about 400,000 infants are born. Every newborn is screened for inherited, treatable diseases to prevent profound injuries such as mental and physical disabilities and even death.
I’m here to tell you the story of two of my children. My 9 year old son Seth stands as a shining example of the success of newborn screening. At 11 days old, we received a call that one of the newborn screens came back abnormal. 2 days later, Seth was diagnosed with PKU. Today Seth is a totally healthy. Without newborn screening, Seth would be severely mentally disabled and handicapped, his medical care costing up to $700,000 dollars annually. Because Seth is healthy, our family does not require State assistance for his medical care.
On Dec. 12, 2008, my 11 month old son, Greyson William Morris died in my arms. Greyson also had a treatable disease. He received the same newborn screen all Texas infants do. Tragically the test that could have detected his disease was not part of that screen. My family and I have resolved to make sure that no other family has to lose a child to a detectable, treatable disease.
Texas only screens for 27 out of 29 mandated tests. The 28th is Cystic Fibrosis. It was passed in 2005 as HB 790 and is awaiting funding. The ACMG (American College of Medical Genetics) recommends the reporting of an additional 25 diseases for a total of 54. In Texas we are truly failing children who suffer from these diseases. Not all of the diseases are as manageable as Seth’s but the KEY is to detect them and begin management BEFORE the onset of symptoms. As a medical professional, I can tell you we will never have treatment options for all of these diseases unless we screen for them, diagnosis them, and study them!
HB 1795 is vital legislation, drafted with the cooperation of the Dept. of State Health Services, but it is a small step in a much more complex journey. Using the technology that the State Lab now possesses, HB 1795 would add 20 additional diseases to the present newborn screening panel. It makes no real sense to exclude these additional tests. The need for additional testing to protect our infants in Texas is right before you and can not be ignored any longer. Both of my sons prove it.
HB 1795 also creates an Advisory Council to guide and ensure the Texas newborn screening program is kept abreast of the future recommendations of the ACMG and therefore ensures Texas will assume a more proactive approach in the future.
Thank you for your time and consideration. I strongly urge you to vote YES to HB 1795. Not because it will lessen my families pain, but because it is your duty to protect all infants born in the State of Texas!
Are there any questions?
My name is William Morris and I am here today not only as a concerned parent but as a Pediatric nurse with 13 years of experience. I am asking for your help in protecting our most precious resource in the State of Texas, our children….. Every year about 400,000 infants are born. Every newborn is screened for inherited, treatable diseases to prevent profound injuries such as mental and physical disabilities and even death.
I’m here to tell you the story of two of my children. My 9 year old son Seth stands as a shining example of the success of newborn screening. At 11 days old, we received a call that one of the newborn screens came back abnormal. 2 days later, Seth was diagnosed with PKU. Today Seth is a totally healthy. Without newborn screening, Seth would be severely mentally disabled and handicapped, his medical care costing up to $700,000 dollars annually. Because Seth is healthy, our family does not require State assistance for his medical care.
On Dec. 12, 2008, my 11 month old son, Greyson William Morris died in my arms. Greyson also had a treatable disease. He received the same newborn screen all Texas infants do. Tragically the test that could have detected his disease was not part of that screen. My family and I have resolved to make sure that no other family has to lose a child to a detectable, treatable disease.
Texas only screens for 27 out of 29 mandated tests. The 28th is Cystic Fibrosis. It was passed in 2005 as HB 790 and is awaiting funding. The ACMG (American College of Medical Genetics) recommends the reporting of an additional 25 diseases for a total of 54. In Texas we are truly failing children who suffer from these diseases. Not all of the diseases are as manageable as Seth’s but the KEY is to detect them and begin management BEFORE the onset of symptoms. As a medical professional, I can tell you we will never have treatment options for all of these diseases unless we screen for them, diagnosis them, and study them!
HB 1795 is vital legislation, drafted with the cooperation of the Dept. of State Health Services, but it is a small step in a much more complex journey. Using the technology that the State Lab now possesses, HB 1795 would add 20 additional diseases to the present newborn screening panel. It makes no real sense to exclude these additional tests. The need for additional testing to protect our infants in Texas is right before you and can not be ignored any longer. Both of my sons prove it.
HB 1795 also creates an Advisory Council to guide and ensure the Texas newborn screening program is kept abreast of the future recommendations of the ACMG and therefore ensures Texas will assume a more proactive approach in the future.
Thank you for your time and consideration. I strongly urge you to vote YES to HB 1795. Not because it will lessen my families pain, but because it is your duty to protect all infants born in the State of Texas!
Are there any questions?
You guys did a great job! I thought both of your presentations were wonderful!
ReplyDeleteWhat You, Nicole, and your boys have done is truly amazing. I am so very proud of you all for your courage and drive to make expanded newborn screening a reality so that other families could be spared the pain your family has endured. WHAT AN ACCOMPLISHMENT!!!
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