Ideas for Advocacy Efforts

Things are beginning to move along. I developed a presentation booklet which I have sent to my stepmother to get her ideas. I went fairly in-depth with several ideas, and in the interest of not posting ridiculously long blog posts I am going to separate them out into different posts. They'll be put up over the next few days. Any suggestions or ideas about the plans I am laying out are appreciated. I want to note that there is a bit of research I need to do to determine exactly how to go about putting these initiatives into action. The research is ongoing, but this is why I lay out different ways to make it happen - I have not yet determined which will be the best, or correct, course.

1. Enact mandatory reporting of prion disease cases nationwide to the Centers for Disease Control (CDC).

Currently, each state sets it own standards for reporting CJD and other prion disease cases to the CDC.[i] Reporting these cases to the CDC is essential in order to ensure that all cases of prion disease are recorded and considered in national data.

Uniform reporting requirements throughout the United States could be achieved in several ways. A CDC mandate would be ideal; however, if this is not well received it could be accomplished on the federal level or on a state-by-state basis.

The processes for the federal and state plans are similar. The APDA will determine if action needs to be taken legislatively, or if it can be a regulation from the executive branch or head of the appropriate federal or state agency.

If this can be achieved through regulations, the organization will determine the appropriate contact within the agency and send a letter with our request, backed up by relevant research statistics, to this contact. Follow-up mailings, emails and phone calls will be made to determine the agency’s position on our request.

If a regulatory approach is not feasible, a comprehensive lobbying campaign will be put into place. On the state level, this will involve compiling a detailed list of all representatives and senators in states without CJD reporting requirements; on the federal level, all U.S. representatives and senators. The organization will send letters to these legislators with our requests, including reply forms to indicate their level of interest (interested in sponsoring legislation, interested in supporting legislation, interested in circulating a “Dear Colleague Letter,” no interest, etc.) While many legislators may not take the time to return this, some likely will and the APDA will be able to identify sympathetic legislators. Follow-up with these legislators will be done promptly by sending additional information as needed, and keeping interested legislators apprised of our progress. Additionally, the organization will identify prion disease victims and their families in these legislative districts and encourage them to write letters to their representatives. The APDA will create a list of prion disease sufferers over the past 10-15 years in each district to be sent to the appropriate legislator. Many legislators may only realize how important this issue is to their district when they realize it is affecting their constituency.

[i] Philip Yam, The Pathological Protein: Mad Cow, Chronic Wasting and Other Deadly Prion Diseases (New York, New York: Copernicus Books, 2003), 17.