On Wednesday, July 22, 2009, the House of Representatives passed the Departments of Labor, Health and Human Services, and Education Appropriations bill for Fiscal Year 2010. The Lupus Foundation of America thanks House of Representative members for including in the bill:
- Language urging the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) to increase lupus research.
- $1 million to continue the national lupus health education program for physicians and healthcare providers within the Office of Minority Health.
- $4,009,000 for the National Lupus Patient Registry (NLPR) at the Centers for Disease Control and Prevention (CDC).
On Tuesday, July 28, 2009, the Senate Labor HHS Appropriations Subcommittee included $5 million for the NLPR program at the CDC for Fiscal Year 2010 in the Senate’s version of the spending legislation, which funds health-related agencies that are important to lupus research such as the NIH, CDC, and the FDA. The Lupus Foundation of America is hopeful that the full Senate Appropriations Committee will concur with the Labor HHS Subcommittee and also pass the $5 million for the NLPR when it is expected to consider the bill on Thursday, July 30, 2009. The bills will then be voted on by the full Senate and negotiated in conference with the House later this fall. LFA will continue its work to ensure that these provisions are included in the final legislation.
The National Lupus Patient Registry is integral to an epidemiological study to determine the true national incidence and prevalence of lupus among all populations and for determining the burden of the disease on individuals, families and society. To date, the NLPR program has received $12.1 million which has been used to create four study sites in California, Georgia, Michigan, New York, and the Indian Health Service.
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