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Legislative Action Progress for People with CF

Winter 2001 - 2002
EPA Takes Action on B. cepacia as Environmental Risk

The Cystic Fibrosis Foundation is pleased that the Environmental Protection Agency (EPA) has acknowledged the risk of Burkholderia cepacia to people with CF and has taken further steps to address the development of any new products using these organisms.

In its response to the CF Foundation's citizen's petition filed in August, the EPA has issued a Significant New Use Rule under the Toxic Substances Control Act. This proposed rule requires all manufacturers, importers, and processors of B. cepacia products to notify the EPA at least 90 days before any new use of B. cepacia occurs. The rule also gives the CF Foundation notice that a manufacturer is considering a future use of B. cepacia. It allows the EPA the opportunity to evaluate the intended new use and, if necessary, to prohibit or limit that activity before it occurs. This rule provided an opportunity for the EPA to discover definitively if there are any existing uses of B. cepacia -- an manufacturers must submit this information during the public comment phase of the rule-making process.

Currently, there is no evidence of use of these products for bioremediation (i.e., to clean up contaminated ground water) other than for research and development activities; however, B. cepacia continues to be used as a biopesticide. The EPA contacted more than 100 companies and researchers and found no commercially available products using B. cepacia. The CF Foundation will continue to work with the EPA on this activity as well as identify other ways to ensure appropriate action on the development of any new products with B. cepacia.

Budget Battles for NIH

Although the fiscal year started on Oct. 1, 2001, the Congress is still finalizing its recommendations for the annual budget for the National Institutes of Health (NIH), the CF Foundation's premier research partner. Once the federal budget is passed, the CF Foundation expects an increase of $2.9 billion or 14 percent for the NIH. This will result in a total of $23.3 billion for the year. This is the fourth installment in the efforts of the patient and research community to double the NIH budget by 2003. The CF Foundation will continue to work closely with the NIH to encourage support for CF research, particularly clinical trials. The CF Foundation appreciates the efforts of the CF community that helped highlight the need for a strong CF research investment.

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