Now that I have mailed my proposal off to my stepmother, I have started doing some of the background research for my ideas. In particular, trying to identify which states currently require reporting to the CDC. I feel this list must exist somewhere - I can't be the first person interested in finding the information - but I certainly can't find it online. I am taking the approach of searching by each state, but I am not finding the information online there either. It appears it may take many phone calls (possibly just one to the CDC), but I am not quite at the point where I'm ready to be calling people and telling them about the organization. I feel a little stuck, but I'm still plowing away, hoping I will stumble across a great resource to give me the information.
But, without further ado, I give you Part II of my ideas:
1. Advocate funding for better prion disease tests, particularly a blood test.
The difficulty in diagnosing prion diseases is a major roadblock to ensuring all cases are identified. While research is already underway to develop more efficient tests, better funding for organizations conducting this research is needed to develop the test as quickly as possible.
To further this goal, the APDA will contact professors of neurology Elias and Laura Manuelidis at Yale University to gather more information on their 1980’s study of 46 randomly selected patients who reportedly died from Alzheimer’s. The autopsies conducted revealed six patients had actually died of CJD.[i] The APDA will identify researchers willing to do a follow-up study. If indeed many CJD patients are being misdiagnosed with Alzheimer’s, this has enormous implications for the true number of CJD cases. Brain biopsy and autopsy are currently the only ways to definitively diagnose CJD. These methods may be traumatic to patients and families, thereby reducing the number of people being tested for the disease. A simpler, less invasive test will be an important step in obtaining an accurate number of CJD cases.
Identifying all cases of prion diseases in the United States is absolutely necessary, as it may show the disease is not as rare as currently believed.
[i] D.T. Max, The Family that Couldn’t Sleep: A Medical Mystery (New York: Random House Trade Paperbacks, 2007), 216.
Tuesday, February 24, 2009
Friday, February 20, 2009
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.
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.
Friday, February 13, 2009
The Mission
Over the past month, I have spent a lot of time thinking and planning. I have a lot of ideas for the direction of the organization on paper and I am almost ready to start taking the next steps to really get the organization off the ground. I'll be honest, it is a bit intimidating. The process of incorporating, applying for non-profit status and developing the rules which govern the organization seem very overwhelming. That being said, the end result of knowing I did something to help others dealing with prion diseases will make it all worthwhile. I also have a lot of very supportive friends (family too) who are helping to ease the burden of things like starting a website. So, thank you guys!
Today, I want to go ahead and share the mission statement I have developed for the organization, which I intend to call the Association for Prion Disease Advocacy, or APDA. I suspect some changes will need to be made as I bring more people in on the project, but hopefully this will give you a good idea of what I am trying to do.
MISSION STATEMENT
Our mission is to provide legislative advocacy at the state and federal level for all prion disease issues. We strive to achieve this mission by increasing legislator awareness, identifying legislators sympathetic to our cause and lobbying for issues that affect prion disease sufferers, their families, research and the health of the public at large. Additionally, we will increase public awareness of prion diseases through ad campaigns, letters to the editors of newspapers and medical publications and publicizing any U.S. cases of Bovine Spongiform Encephalopathy (BSE) in cattle or variant Creutzfeldt-Jakob Disease (vCJD) in humans.
I will be posting more details to come about projects I have planned and, hopefully, the progress I am making on getting the organization started.
Today, I want to go ahead and share the mission statement I have developed for the organization, which I intend to call the Association for Prion Disease Advocacy, or APDA. I suspect some changes will need to be made as I bring more people in on the project, but hopefully this will give you a good idea of what I am trying to do.
MISSION STATEMENT
Our mission is to provide legislative advocacy at the state and federal level for all prion disease issues. We strive to achieve this mission by increasing legislator awareness, identifying legislators sympathetic to our cause and lobbying for issues that affect prion disease sufferers, their families, research and the health of the public at large. Additionally, we will increase public awareness of prion diseases through ad campaigns, letters to the editors of newspapers and medical publications and publicizing any U.S. cases of Bovine Spongiform Encephalopathy (BSE) in cattle or variant Creutzfeldt-Jakob Disease (vCJD) in humans.
I will be posting more details to come about projects I have planned and, hopefully, the progress I am making on getting the organization started.
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