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 Ralph Regula
Chairman
House Appropriations Committee
Labor, Health and Human Services Education Subcommittee
2309 Rayburn House Office Building
Washington, D.C.  20515

The Honorable Arlen Specter
Chairman
Senate Appropriations Committee
Labor, Health, and Human Services, Education Subcommittee
711 Hart Senate Office Building
Washington, D.C.  20510

The Honorable Thad Cochran
Chairman
Senate Appropriations Agriculture,
Rural Development and Related Agencies Subcommittee
326 Russell Senate Office Building
Washington, D.C.  20510

The Honorable Henry Bonilla
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!!!

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

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