 |
 |
>2. Who and/or what group initated this measure and what is their purpose? The PD Registry Act was the direct result of action taken by Parkinson patients and their families organized as N-PAIN (Nebraska Parkinson Action and Information Network). An organization originally established to try to negotiate with the University of Nebraska Medical Center when the UNMC was planning to drop the Parkinson's program......Some were patients at UNMC, other members were not patients at UNMC but made use of the I&R Center and educational opportunities provided for PD patients. That initial struggle to save the PD clinic was not successful........the $ won and the transplant unit expansion has continued. NPAIN then went forward with presentation of requests and lobbying efforts for legislation for Registry in Unicameral (we have only 1 house in our state legislature.) Strong support was also offered by Parkinson's researchers. NPAIN was formed as a separate organization so as not to disrupt the support groups already existing in the state. Membership is made up of many of the same folks who are in the support groups, but a need to keep support and political activity as two separate issue was recognized and fulfilled. New patients are frequently not ready to be politically active but frightened of their diseas. Advanced patients are not able to offer time so needed for these struggles. Sorry to disappoint those who bet on the involvement of the insurance industry...............I don't think they had any involvement whatsoever. Rita Weeks The Parkinson Disease Registry Act was passed by the Nebraska legislators on April 9th 1996 and signed into law by Governor Nelson. It goes into effect January 1, 1997. I am inherently cynical enough to imagine that the insurance lobby exerted the most pressure to bring this legislation about, but I don't know that. In six weeks it won't much matter who originally initiated the matter.