Angela Godby, Assistant Vice Chancellor for Federal Relations for the University of Texas System.
The Fight for Increased Funding for NIH

The National Institutes of Health (NIH) is the lead biomedical research agency of the federal government. Support for NIH is key to ensure that researchers continue to make strides in genetics and treatment research for ichthyosis and other diseases. NIH received less than a 1% increase this fiscal year. This represents the fifth year of stagnant growth and almost an 11% drop in purchasing power for the NIH.

However, there is some hope out there. Included in the recently passed supplemental funding package to pay for the Iraq war, is an additional $150 million for NIH. The NIH could also see increased funding in fiscal year 2009, which begins October 1, 2008. While the President proposed essentially flat funding, the House and Senate Appropriations Committees are working to add over $1 billion, or roughly a 3.5%, increase. Unfortunately, the appropriations process has been thrown off track by procedural partisan wrangling in an election year. It is unlikely that the funding bills will be finalized until early next year.

FIRST supports a 6.6% ($1.9 billion) increase in NIH. This amount would allow NIH to keep pace with biomedical inflation and continue to fund vital research and attract the best and brightest researchers. Please urge your congressional representatives to support a 6.6% increase in NIH. For information on how to reach your federal representatives go to and

Genetic Non-discrimination Act Signed Into Law by President
In response to growing concerns over discrimination on the basis of genetic information found through genetic testing, Congress passed the Genetic Information Nondiscrimination Act. The bill was signed into law on May 21, 2008. The bill prohibits discrimination on the basis of genetic information with respect to health insurance and employment. The measure also establishes basic legal protections that will enable and encourage individuals to take advantage of genetic screening, counseling, testing, and new therapies. Furthermore, the bill prevents health insurers from denying coverage or adjusting premiums based on an individual's predisposition to a genetic condition, and prohibits employers from discriminating on the basis of predictive genetic information. Additionally, the bill stops both employers and insurers from requiring applicants to submit to genetic tests, maintains strict use and disclosure requirements of genetic test information, and imposes penalties against employers and insurers who violate these provisions.

Health Information Technology Legislation Approved
On Wednesday, June 25, the House Energy and Commerce Subcommittee on Health approved the “Protecting Records, Optimizing Treatment, and Easing Communication through Healthcare Technology Act of 2008.” The legislation promotes the nationwide adoption of a Health Information Technology (HIT) infrastructure and establishes incentives for doctors, hospitals, insurers, and the government to exchange health information electronically across the country. Additionally, the bill makes permanent the Office of the National Coordinator for Health Information Technology at the U.S. Department of Health and Human Services and encourages the use of an electronic health record for each person in the United States by 2014. It also strengthens the law protecting the security and privacy of an individual’s health information through provisions such as requiring notification when personal health information is breached.

News on the Hill keeps members current with the legislation in Washington, DC. This column is written by Angela Godby, affected with lamellar/CIE.
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