I just want to point out a few features I just added to the blog. On the righthand side of the screen, you can find links to a few other websites which will give you more information on CJD and prion diseases. Also on the righthand side, I have added a feature which will allow you to become a follower of the blog.
I created a facebook group for prion disease advocacy. A lot of the information on the two sites will most likely be similar, but I wanted to have several avenues for people to find out about this and remain updated. If you are also on facebook, please join the group and let other people who are interested know about it as well. I would like to reach as many people in the community as possible. If no one knows about it, they can't help!
Tuesday, March 10, 2009
Variant CJD in Spain
In my efforts to keep you updated on prion disease news, I will post links to relevant articles I find online. If anyone comes across something online you think is of interest, please feel free to either post it in the comments section of the blog, or email it to me at ptennant@priondisease.org. The first is an article from cnn.com, regarding a recent death from vCJD in Spain. Thanks to Denise for sending that along to me.
The second is a press release put out by the Canadian Wildlife Federation regarding the status of Chronic Wasting Disease. The full report is available if you email Leigh Edgar at leighe@cwf-fcf.org. The report itself is 25 pages. I have a copy of it which I am in the process of reading through and will provide you with my thoughts shortly.
Finally, things are slowly but surely moving along here on my end. My step-mother and I had a very long talk last week about my ideas for this organization, and she was very helpful and insightful. I am now trying to get my thoughts together before I approach the CJD Foundation. It is a little bit of an intimidating step - presenting my ideas to people who work in the field and aren't related to me or my close friends. I have high hopes that they will be receptive and as positive as everyone else has been. More to come on this later!
The second is a press release put out by the Canadian Wildlife Federation regarding the status of Chronic Wasting Disease. The full report is available if you email Leigh Edgar at leighe@cwf-fcf.org. The report itself is 25 pages. I have a copy of it which I am in the process of reading through and will provide you with my thoughts shortly.
Finally, things are slowly but surely moving along here on my end. My step-mother and I had a very long talk last week about my ideas for this organization, and she was very helpful and insightful. I am now trying to get my thoughts together before I approach the CJD Foundation. It is a little bit of an intimidating step - presenting my ideas to people who work in the field and aren't related to me or my close friends. I have high hopes that they will be receptive and as positive as everyone else has been. More to come on this later!
Tuesday, March 3, 2009
Ideas, Parts III and IV
The past week has been a little frustrating, as I have struggled to find the information I need online while trying to determine the best way to take the next step in starting the organization. I don't seem to be making much progress on either front. I'm just trying to be patient and keep reminding myself that things don't happen overnight.
I now bring the third and fourth (final) installment of my ideas for the organization. I am certain I will have more ideas later on, but these are the ones I have developed to the point of sharing.
1. Advocate better testing for Bovine Spongiform Encephalopathy (BSE) and stricter requirements on the sale of beef.
Public health is at risk due to insufficient testing requirements for BSE in the United States. The CDC reports that three cases of BSE have been found in the United States to date.[i] While no products derived from these known cases have made it into the food supply, the United States Department of Agriculture (USDA) provides testing for only a small percentage of all cattle slaughtered in this country. Current surveillance efforts are focused in herds where a BSE is most likely to be found.[ii] From a statistical standpoint, the sampling methodology and frequency may be inadequate to ensure public safety. The incubation period of the disease is long enough that many cattle may be suffering from the disease yet not show any symptoms, thus giving infected cattle ample opportunity to enter the food supply and endanger the general public.
Many similarities can be drawn between the current U.S. government denial of a problem and the reactions of the British government before the mad cow outbreak in the U.K in the 1980’s. The British government’s denial of a human health risk and subsequent lack of action caused the exposure of millions of citizens to BSE.[iii] In order to ensure the U.S. government does all it can to protect the public health and that no BSE cattle enter the food chain, all cases of BSE infection must to be publicized as extensively as possible. Identifying knowledgeable and reliable sources in the media who are willing to keep a spotlight on these issues is a key goal of the APDA.
While many regulations have been put in place to help protect the public, they are only effective if properly followed and applied. Feed bans and slaughterhouse procedures must be strictly followed to ensure the safety of the food supply. The organization will compile data on regulations and inform the public of violations, as well as work to improve oversight in areas where it is lacking. Organizations who compile this information already exist, and the APDA will build relationships with these organizations to assemble more thorough and relevant information.
The U.S. government lags behind Europe in restricting the sale of certain parts of cattle known to be the most infectious, i.e. brain, intestines and mechanically recovered meat. There are no restrictions on the use of bovine protein in drugs or protein supplements for humans.[iv] Additionally, it is still legal in the United States to include chicken droppings in cattle feed. Chicken feed often includes bovine protein, and prions have been shown to survive excretion, creating a scenario where prions could potentially reenter the bovine food supply and spread infection.[v] These areas are major sources of concern, and the organization will strive ensure these poor industry policies and practices are corrected.
2. Public Advocacy
A significant problem facing the prion disease community at this time is the lack of public knowledge about these diseases. The only information most people have about prion disease comes from BSE, and many only know it as “mad cow disease.” To increase public awareness, the organization will write letters to the editors of small and large papers and publications around the country. As the standing of the organization around the country increases, larger papers will be more likely to print our letters and press releases. In the meantime, the APDA will concentrate on writing to smaller papers in communities with CJD cases. The affected families in these communities will be consulted, as they may prefer to write the letters themselves.
As funding allows, the APDA will explore television and radio advertising to reach a large audience. This can be very costly, particularly to a small, start-up organization, but the benefits will far outweigh the costs.
The organization will provide information to the public on the organization’s mission and ongoing projects through the website (www.priondisease.org) and blog (currently at www.cjdadvocacy.blogspot.com, but will be relocated to website at a later date.) The APDA website will also host a moderated forum where site visitors can post their ideas and also find links to other prion disease-related sites.
[i] Centers for Disease Control website, About BSE http://www.cdc.gov/ncidod/dvrd/bse/ (February 13, 2009).
[ii] USDA publication USDA’s BSE Surveillance Efforts http://www.aphis.usda.gov/publications/animal_health/content/printable_version/fs_BSE_ongoing_vs.pdf (February 13, 2009).
[iii] D.T. Max, The Family that Couldn’t Sleep: A Medical Mystery (New York: Random House Trade Paperbacks, 2007), 172-82
[iv] Max, 219
[v] Max, 219
I now bring the third and fourth (final) installment of my ideas for the organization. I am certain I will have more ideas later on, but these are the ones I have developed to the point of sharing.
1. Advocate better testing for Bovine Spongiform Encephalopathy (BSE) and stricter requirements on the sale of beef.
Public health is at risk due to insufficient testing requirements for BSE in the United States. The CDC reports that three cases of BSE have been found in the United States to date.[i] While no products derived from these known cases have made it into the food supply, the United States Department of Agriculture (USDA) provides testing for only a small percentage of all cattle slaughtered in this country. Current surveillance efforts are focused in herds where a BSE is most likely to be found.[ii] From a statistical standpoint, the sampling methodology and frequency may be inadequate to ensure public safety. The incubation period of the disease is long enough that many cattle may be suffering from the disease yet not show any symptoms, thus giving infected cattle ample opportunity to enter the food supply and endanger the general public.
Many similarities can be drawn between the current U.S. government denial of a problem and the reactions of the British government before the mad cow outbreak in the U.K in the 1980’s. The British government’s denial of a human health risk and subsequent lack of action caused the exposure of millions of citizens to BSE.[iii] In order to ensure the U.S. government does all it can to protect the public health and that no BSE cattle enter the food chain, all cases of BSE infection must to be publicized as extensively as possible. Identifying knowledgeable and reliable sources in the media who are willing to keep a spotlight on these issues is a key goal of the APDA.
While many regulations have been put in place to help protect the public, they are only effective if properly followed and applied. Feed bans and slaughterhouse procedures must be strictly followed to ensure the safety of the food supply. The organization will compile data on regulations and inform the public of violations, as well as work to improve oversight in areas where it is lacking. Organizations who compile this information already exist, and the APDA will build relationships with these organizations to assemble more thorough and relevant information.
The U.S. government lags behind Europe in restricting the sale of certain parts of cattle known to be the most infectious, i.e. brain, intestines and mechanically recovered meat. There are no restrictions on the use of bovine protein in drugs or protein supplements for humans.[iv] Additionally, it is still legal in the United States to include chicken droppings in cattle feed. Chicken feed often includes bovine protein, and prions have been shown to survive excretion, creating a scenario where prions could potentially reenter the bovine food supply and spread infection.[v] These areas are major sources of concern, and the organization will strive ensure these poor industry policies and practices are corrected.
2. Public Advocacy
A significant problem facing the prion disease community at this time is the lack of public knowledge about these diseases. The only information most people have about prion disease comes from BSE, and many only know it as “mad cow disease.” To increase public awareness, the organization will write letters to the editors of small and large papers and publications around the country. As the standing of the organization around the country increases, larger papers will be more likely to print our letters and press releases. In the meantime, the APDA will concentrate on writing to smaller papers in communities with CJD cases. The affected families in these communities will be consulted, as they may prefer to write the letters themselves.
As funding allows, the APDA will explore television and radio advertising to reach a large audience. This can be very costly, particularly to a small, start-up organization, but the benefits will far outweigh the costs.
The organization will provide information to the public on the organization’s mission and ongoing projects through the website (www.priondisease.org) and blog (currently at www.cjdadvocacy.blogspot.com, but will be relocated to website at a later date.) The APDA website will also host a moderated forum where site visitors can post their ideas and also find links to other prion disease-related sites.
[i] Centers for Disease Control website, About BSE http://www.cdc.gov/ncidod/dvrd/bse/ (February 13, 2009).
[ii] USDA publication USDA’s BSE Surveillance Efforts http://www.aphis.usda.gov/publications/animal_health/content/printable_version/fs_BSE_ongoing_vs.pdf (February 13, 2009).
[iii] D.T. Max, The Family that Couldn’t Sleep: A Medical Mystery (New York: Random House Trade Paperbacks, 2007), 172-82
[iv] Max, 219
[v] Max, 219
Tuesday, February 24, 2009
Ideas, Part II
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.
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.
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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