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"I'd like to commend Phil Tompkins and Linda Herman for all their diligent work posting helpful information regarding NIH funding, Parkinson's funding and the fiscal 1999 Omnibus Budget bill. I would also like to urge them and anyone with questions about these topics to contact the Parkinson's Action Network by phone at (800) 850-4726 or email at [log in to unmask] We can provide the raw data (language, numbers, etc.) along with important context, interpretation and perspective on the political impact of this information. Several questions have arisen in the online discussion, and I would like to take a few minutes to address them. First off, it should be restated that the report language the accompanied the House and Senate Labor-HHS bills is included "by reference" in the final Labor-HHS conference report which passed as part of the omnibus budget package. The paragraph on Parkinson's included in the conference report is IN ADDITION to the other report language, and was proposed and adopted in order to STRENGTHEN and CLARIFY the previously adopted report language. As we published at the time of its passage, the report language accompanying the Senate Labor-HHS Appropriations bill is the best report language the Parkinson's community had received up until that point. Unfortunately, while the language is lengthy, detailed and sounds good, it lacks the clearly stated instructions we believe are required to get NIH to comply. Most notably is the frequent use of the verb "encourages," which is too ambiguous to compel the NIH to change their current unsatisfactory Parkinson's funding practices. Simply put, stating "the Committee encourages" the NIH to fund the Udall bill is not enough to make them actually do it. The conference report language strengthens the other report language by stating that "Consistent with the enactment of the (Udall) Act, NIH is EXPECTED to utilize resources for research focused on Parkinson's disease..." When Congress says "NIH is expected" to fund additional Parkinson's research, it is much stronger than merely encouraging that research be funded. Furthermore, the additional language includes a definition of what Congress understands Parkinson's-focused research to be: "where the principal focus of the research is the cause, pathogenesis, and/or potential therapies or treatment for Parkinson's disease." This language is specifically included to address the documented NIH practice of including research totally unrelated to Parkinson's as part of their Parkinson's research portfolio. This is also a major step forward. The first sentence of the conference report language states: "The conference agreement supports the fiscal year 1999 funding level proposed in NIH budget documents for Parkinson's disease." This is a reference to NIH's published amount of $106 million for Parkinson's research in fiscal 1999. This sentence is an attempt to "lock in" that funding figure my having Congress acknowledge and accept it. The other sentences, discussed above, then attempt to ensure that ALL of that $106 million will be spent on Parkinson's-focused research, as defined. So does this mean $106 million will be spent on Parkinson's-focused research in 1999? Probably not. Despite this improved language, and our successes in raising Congressional awareness of Parkinson's, the NIH will likely continue is practice of including lots of so-called "related" research in its Parkinson's program. It is our responsibility to continue to monitor the situation and continue to work with our supporters in Congress to require NIH to fulfill both the letter and the spirit of the Udall Act. To help us reach that end, five Senators participated in a colloquy - or a conversation included in the Congressional record - specifically detailing their concerns with NIH's current funding practices and stating Congressional intent to fully fund the Udall Act. The Senators are: Thad Cochran (R-MS), Larry Craig (R-ID), John McCain (R-AZ), Paul Wellstone (D-MN) and Arlen Specter (R-PA). I will have a separate post with the text of the colloquy - which Phil Tompkins already posted to the List - as well as more information about it. Suffice to say for now that this is another important step for our community. Please refer any questions or comments to the Parkinson's Action Network: (800) 850-4726. Sincerely, Michael Claeys Community Outreach Coordinator"