© 2008 Save Babies Through Screening Foundation. All rights reserved.
The Save Babies Through Screening Foundation is a not-for-profit organization recognized as tax-exempt under Internal Revenue Code section 501(c)(3).
Our mission is to improve the lives of children by working to prevent death and disabilities resulting from disorders detectable through newborn screening tests.
The Save Babies Through Screening Foundation is a not-for-profit organization recognized as tax-exempt under Internal Revenue Code section 501(c)(3).
Our mission is to improve the lives of children by working to prevent death and disabilities resulting from disorders detectable through newborn screening tests.
Save Babies Through Screening Foundation, Inc.
P. O. Box 42197 • Cincinnati, Oh 45242
Toll Free: 1-888-454-3383
P. O. Box 42197 • Cincinnati, Oh 45242
Toll Free: 1-888-454-3383
Letter Writing Campaigns
Save Babies Through Screening has several letter writing campaigns that we need your help with. Please consider taking a moment to send a letter today!
Letters to U.S. Healthcare to encourage that they cover cost of supplemental newborn screening
Letters are being collected to encourage U.S. Healthcare to pay for the cost of supplemental newborn screening tests. These tests cost approximately $25 per test. Most insurance companies do not currently cover the costs of these tests.
Fewer than 10% of the nation's babies get this screening. This low screening rate is not only because many doctors and parents don't know the test exists, but because hospitals and insurance companies don't want to pay for it. It is for this reason the letter writing campaign was developed.
Mary Smith (biotinidase deficiency parent) from the Organic Acidemia Association and the Save Babies Through Screening Foundation are collecting letters which they plan to personally hand deliver to U.S. Healthcare's doorstep. It is hoped that these boxfuls of letters showing consumer demand for the screening will convince U.S. Healthcare to cover the cost of the screening, and, in turn, other insurance companies will follow. Once insurance covers the screening, hospitals will do the screening on ALL babies at birth, thus saving more children from brain damage and death.
Letters are currently being collected and everyone is encouraged to send a letter as soon as possible. Also, please persuade everyone you can to contribute letters, as well. Don't forget to get letters from your spouse, your children, your family, your friends, your neighbors, your co-workers, your school, your church, etc. Anyone pressed for time can simply cut and paste from the sample letter provided below.
Please mail letters to:
Save Babies Through Screening Foundation, Inc.
P. O. Box 5037
Douglasville, GA 30154
SAMPLE LETTER
If you are pressed for time, you can copy and paste this letter, and mail to the addresses above. But, feel free to write a letter on your own. This sample letter is provided only for those with little time, yet who still want to participate.
Dear U.S. Healthcare:
I like babies, and I think they deserve a fair start. Since there is something called "comprehensive newborn screening with tandem mass spectrometry" that detects 35 metabolic disorders at birth, and costs only $25, it seems to me it is well worth it. It saves children from needless brain damage and death! Please cover the cost immediately!
Sincerely,
Your Name
Address
Fewer than 10% of the nation's babies get this screening. This low screening rate is not only because many doctors and parents don't know the test exists, but because hospitals and insurance companies don't want to pay for it. It is for this reason the letter writing campaign was developed.
Mary Smith (biotinidase deficiency parent) from the Organic Acidemia Association and the Save Babies Through Screening Foundation are collecting letters which they plan to personally hand deliver to U.S. Healthcare's doorstep. It is hoped that these boxfuls of letters showing consumer demand for the screening will convince U.S. Healthcare to cover the cost of the screening, and, in turn, other insurance companies will follow. Once insurance covers the screening, hospitals will do the screening on ALL babies at birth, thus saving more children from brain damage and death.
Letters are currently being collected and everyone is encouraged to send a letter as soon as possible. Also, please persuade everyone you can to contribute letters, as well. Don't forget to get letters from your spouse, your children, your family, your friends, your neighbors, your co-workers, your school, your church, etc. Anyone pressed for time can simply cut and paste from the sample letter provided below.
Please mail letters to:
Save Babies Through Screening Foundation, Inc.
P. O. Box 5037
Douglasville, GA 30154
SAMPLE LETTER
If you are pressed for time, you can copy and paste this letter, and mail to the addresses above. But, feel free to write a letter on your own. This sample letter is provided only for those with little time, yet who still want to participate.
Dear U.S. Healthcare:
I like babies, and I think they deserve a fair start. Since there is something called "comprehensive newborn screening with tandem mass spectrometry" that detects 35 metabolic disorders at birth, and costs only $25, it seems to me it is well worth it. It saves children from needless brain damage and death! Please cover the cost immediately!
Sincerely,
Your Name
Address
Letter Writing Campaign for Children's Health Act of 2000
Your help is needed in a letter writing campaign to federal legislators to help get appropriations for the Newborn Screening title of the Children's Health Act of 2000.
The Children's Health Act of 2000 (H.R. 4365; Title XXVI - Screening For Heritable Disorders, Sec. 2601 Program to Improve the Ability of States to Provide Newborn and Child Screening for Heritable Disorders) bill includes legislation on newborn screening. The bill is now law. It passed both the House of Representatives and the Senate, and it was signed into law by President Bill Clinton on October 17, 2000. However, no appropriations - no funds - has been allotted for it. It is estimated that at least $50 million is needed to fully expand and enhancement the current newborn screening system. Your help in writing to the members of the Appropriations Committee is very much needed to ensure that this legislation gets the money it so deserves.
Not only does this legislation affect newborn screening, but if proper funding is appropriated to Maternal and Child Health (MCH), then this can potentially lead to a grant source for metabolic formulas and medications needed to treat children affected with disorders detectable through newborn screening.
Letters are most effective when handwritten and sent via regular mail (not email), as Senators and Representatives are e-bombed every day, which makes e-mail less effective.
Here are the addresses to the members of the appropriations committees. These are the individuals who will make the decisions for the appropriations.
The Honorable __Insert Name
Chairman
House Appropriations Committee
Labor, Health and Human Services Education Subcommittee
2309 Rayburn House Office Building
Washington, D.C. 20515
The Honorable __Insert Name
Chairman
Senate Appropriations Committee
Labor, Health, and Human Services, Education Subcommittee
711 Hart Senate Office Building
Washington, D.C. 20510
The Honorable __Insert Name
Chairman
Senate Appropriations Agriculture,
Rural Development and Related Agencies Subcommittee
326 Russell Senate Office Building
Washington, D.C. 20510
The Honorable __Insert Name
Chairman
House Appropriations Agriculture, Rural Development,
FDA and Related Agencies Subcommittee
1427 Longworth House Office Building
Washington, D.C. 20515
If you are stumped for what to say and/or are pushed for time, please see the sample letter below. This letter can be easily modified to reflect your relationship to (family member, friend, neighbor, etc.) a child affected by an inherited disorder. It can also be easily changed to reflect if the child has paid the ultimate sacrifice of his or her life needlessly from a disorder detectable through newborn screening. Please encourage everyone you can to write in to help get the much needed appropriations to help newborn screening.
Time is of the essence for sending your letters in. Please take a few minutes out of your day to send a letter TODAY!!!
SAMPLE LETTER
Dear Senator (or Representative)
As the parent of a child affected by an inherited metabolic disorder, I urge you to include specific funding in the amount of $50 million in this year's Labor-HHS-Education appropriations bill for Title XXVI of the Children's Health Act of 2000 (HR 4365).
My son's/daughter's care and treatment has cost our family, our insurance provider, our employer and the nation hundreds of thousands of dollars in treatment that could have been reduced or eliminated had universal, comprehensive newborn screening been in place when he/she was born. Newborn screening would have identified my child's disorder and permitted me to seek early preventative treatment. It also would have spared us the huge emotional and financial toll my child and I now pay.
Please help the many families and children who stand to gain from the implementation of national, universal newborn screening which can be made available through the appropriations of specific funding in this year's Labor-HHS-Education appropriations bill for Title XXVI of the Children's Health Act of 2000 (HR 4365).
Sincerely,
Your Name
Address
Your participation is very much appreciated. If you have any questions about the letter writing campaigns, please contact Save Babies Through Screening Foundation.
Downloadable Sample Letter
Cover Letter for Radio PSA (at bottom of page)
The Children's Health Act of 2000 (H.R. 4365; Title XXVI - Screening For Heritable Disorders, Sec. 2601 Program to Improve the Ability of States to Provide Newborn and Child Screening for Heritable Disorders) bill includes legislation on newborn screening. The bill is now law. It passed both the House of Representatives and the Senate, and it was signed into law by President Bill Clinton on October 17, 2000. However, no appropriations - no funds - has been allotted for it. It is estimated that at least $50 million is needed to fully expand and enhancement the current newborn screening system. Your help in writing to the members of the Appropriations Committee is very much needed to ensure that this legislation gets the money it so deserves.
Not only does this legislation affect newborn screening, but if proper funding is appropriated to Maternal and Child Health (MCH), then this can potentially lead to a grant source for metabolic formulas and medications needed to treat children affected with disorders detectable through newborn screening.
Letters are most effective when handwritten and sent via regular mail (not email), as Senators and Representatives are e-bombed every day, which makes e-mail less effective.
Here are the addresses to the members of the appropriations committees. These are the individuals who will make the decisions for the appropriations.
The Honorable __Insert Name
Chairman
House Appropriations Committee
Labor, Health and Human Services Education Subcommittee
2309 Rayburn House Office Building
Washington, D.C. 20515
The Honorable __Insert Name
Chairman
Senate Appropriations Committee
Labor, Health, and Human Services, Education Subcommittee
711 Hart Senate Office Building
Washington, D.C. 20510
The Honorable __Insert Name
Chairman
Senate Appropriations Agriculture,
Rural Development and Related Agencies Subcommittee
326 Russell Senate Office Building
Washington, D.C. 20510
The Honorable __Insert Name
Chairman
House Appropriations Agriculture, Rural Development,
FDA and Related Agencies Subcommittee
1427 Longworth House Office Building
Washington, D.C. 20515
If you are stumped for what to say and/or are pushed for time, please see the sample letter below. This letter can be easily modified to reflect your relationship to (family member, friend, neighbor, etc.) a child affected by an inherited disorder. It can also be easily changed to reflect if the child has paid the ultimate sacrifice of his or her life needlessly from a disorder detectable through newborn screening. Please encourage everyone you can to write in to help get the much needed appropriations to help newborn screening.
Time is of the essence for sending your letters in. Please take a few minutes out of your day to send a letter TODAY!!!
SAMPLE LETTER
Dear Senator (or Representative)
As the parent of a child affected by an inherited metabolic disorder, I urge you to include specific funding in the amount of $50 million in this year's Labor-HHS-Education appropriations bill for Title XXVI of the Children's Health Act of 2000 (HR 4365).
My son's/daughter's care and treatment has cost our family, our insurance provider, our employer and the nation hundreds of thousands of dollars in treatment that could have been reduced or eliminated had universal, comprehensive newborn screening been in place when he/she was born. Newborn screening would have identified my child's disorder and permitted me to seek early preventative treatment. It also would have spared us the huge emotional and financial toll my child and I now pay.
Please help the many families and children who stand to gain from the implementation of national, universal newborn screening which can be made available through the appropriations of specific funding in this year's Labor-HHS-Education appropriations bill for Title XXVI of the Children's Health Act of 2000 (HR 4365).
Sincerely,
Your Name
Address
Your participation is very much appreciated. If you have any questions about the letter writing campaigns, please contact Save Babies Through Screening Foundation.
Downloadable Sample Letter
Cover Letter for Radio PSA (at bottom of page)
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