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Legislative and Public Policy Affairs Update

Congress Passes Patients' Bill of Rights

Congress made tremendous progress in focusing on healthcare issues and passing the Patients' Bill of Rights this summer. The bills that passed the United States Senate and the United States House of Representatives now must be reconciled in a conference committee to prepare a joint bill that President Bush will sign.

With the change of leadership in the Senate, the Patients' Bill of Rights was raised to the top of the legislative agenda, and the Senate passed legislation, S.1052, in early July. The House passed its version, HR2315, in early August, after the president struck a compromise with Rep. Charlie Norwood of Georgia.

The CF Foundation sent letters of support to the co-sponsors of the Senate and House bills and also requested letters electronically from the Public Policy Alliance for rapid response.

The bills now must be combined in conference committee. The CF Foundation will monitor the debate so that the final bill includes access to specialty care, medications and coverage for treatment costs for people with CF in clinical trials.

EPA Urged to Examine Use of Burkholderia cepacia
In August, the CF Foundation filed a citizen's petition to the Environmental Protection Agency (EPA) to regulate the manufacture and use of B. cepacia complex in the environment. The CF Foundation urges the EPA to require testing of products for B. cepacia; prohibit manufacture of products with B. cepacia; and further prohibit the distribution, use and improper disposal of B. cepacia. The EPA has 90 days to respond to this request.

Funding for the National Institutes of Health (NIH)

Requests to the Public Policy Alliance to send letters to Congress encouraging NIH funding for CF research has gone well. The CF Foundation continues to receive copies to visit members of Congress to request increased funding for the Therapeutics Development Network as a model clinical trials network.

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