From: Alice Lara []
Sent: Friday, April 03, 2009 11:27 AM
Subject: Congressional Budget Appropriations - Action Alert from SADS
SADS Action Alert: Congressional Budget Appropriations
Dear Michelle,

The House of Representatives is now working on their version of the budget for the fiscal year 2010, and Representatives can submit specific appropriations requests for federal programs and projects. Program level requests are due to the House Committee on Appropriations TODAY. We must take action to ensure that our federal health agencies, including NIH, CDC, and HRSA, obtain increased, sustainable funding to continue to improve and transform our health systems.

What You Can Do...
Contact your Representative TODAY, either by fax or email, to ask for their support in increasing the FY10 budget for federal health programs.

To find your Representative's contact information, simply visit and insert your zip code into the upper left hand corner. Then click on your Representative's name. Look for the contact information for the DC office to find the fax number, email address, or instructions for completing a web form.

Writing to your Representative...
If Congress provides increased, sustainable funding for our federal health programs, we can create better systems to benefit all. As SADS families, you know the impact that awareness and prevention programs have played in your life and how vital they are to saving young lives.

The following can be used for an email or voicemail, and can be adapted if a staff member from your Representative's office is available to speak with you:

Dear Representative (insert name),

As your constituent, I am writing to inform you of important priorities identified by the health community. Please consider the following as you make your program level requests to the Appropriations Committee, Subcommittee on Labor, HHS, Education and Related Agencies for the fiscal year 2010 budget:

Strategic, Long-term Translational Research Plan - We urge you to submit a program level request for a 10% increase in funding for the National Institutes of Health (NIH), with $100 million of the NIH budget allocated to the Rare and Neglected Disease Initiative (RNDI). RNDI received start up funding in FY09, but requires a strong and sustained increase to continue work that will ultimately benefit millions of patients with rare and neglected diseases who are waiting for treatments and cures. In addition, we would like to see the Centers for Disease Control and Prevention (CDC) budget increased to $8.6 billion for FY2010.

Services - As research discoveries are translated into services, we will need increased resources for service-related agencies. The Health Resources and Services Administration (HRSA) must receive an adequate funding increase to deliver the benefits of translation to those in need. We need research to improve quality, safety, efficiency, and effectiveness of healthcare as we move into health reform; therefore the Agency for Healthcare Research and Quality (AHRQ) must receive sufficient funding to carry out this important work, including comparative effectiveness research.

Regulatory Oversight - We must upgrade the regulatory capacity for supporting innovation and safety, and increase flexibility to allow for responsiveness to new methods in development of diagnostics and therapies. Appropriations must provide adequate funding for the Food and Drug Administration (FDA) and the Centers for Medicare and Medicaid Services (CMS) to coordinate oversight and regulation of genetic and genomic tests as the cornerstone of personalized medicine. We must minimize duplication of efforts and conflicts in regulation between FDA and CMS. We need a mandatory registry of genetic tests and a risk-based oversight system.

Health Information Technology (HIT) - We must focus substantial funding on HIT to create a research to healthcare services continuum that leverages current technologies and achieves privacy, confidentiality, and access with forward-thinking solutions.

And last, but not least, let us know about what you did! Thank you for all your support in helping to secure funding for much needed health care programs.


Alice Lara
Alice Lara
SADS Foundation

phone: 1-800-STOP SAD

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