The CJD Foundation conference is rapidly approaching, and I hope that you all are planning on attending this weekend, July 10-12. I am looking forward to talking with Marisa and other staff from the CJD Foundation, and I hope that any of you in attendance will seek me out as well. While this conference is not about me, or the Association for Prion Disease Advocacy, I would appreciate any insight, opinions, or advice you can offer me about the focus and future of the APDA.
The internet has been buzzing recently over a Journal of Alzheimer's Disease article regarding the possible risk of BSE transmission through farmed fish. I largely ignored it, as the information is purely speculative; however, since I am finding references to it everywhere, I suppose it is worth a mention. The concern stems from the fact that farmed fish are sometimes fed pellets rendered from cows. The disease has not been shown to transmit to fish, although it is believed that an animal (or fish) does not have to be infected with the disease to transmit it. The abstract can be found here.
An article on grist.org points out the shortcomings of legislation currently in congress regarding the meat packing industry.
The Calgary Herald reports that the University of Calgary will be opening a research facility to investigate the causes of BSE and other prion diseases. The facility will be studying prion diseases in humans and other animals, although it seems the primary focus will be livestock and controlling the spread of Chronic Wasting Disease (CWD). Hopefully, the research will also provide insight into the causes of CJD.
Finally, I believe the Food Safety Working Group will be releasing its findings sometime today. If this is in fact the case, I will pore over the findings in the next few days and give you a run-down as soon as I can.
Tuesday, July 7, 2009
Tuesday, June 16, 2009
More Articles of Interest
This article is about a House bill drafted by the U.S. House Energy and Commerce Committee addressing food safety issues. I will be poring through the bill to see what it includes that is relevant to us, and hopefully writing some letters to the committee either in support or opposition - depending on what it says. Or asking that they include other provisions to safeguard against BSE.
This article discusses alternative remedies, and the odd ingredients often included. It just goes to show you should always read the labels of supplements before you take them. Many include bovine proteins or tissue known to be particularly infections in a BSE infected cow.
And finally, an article discussing how rogue proteins may also be responsible for Alzheimer's.
The website is coming along very well. The test site is almost perfected, which means the launch date will be soon! Once it is up and running, I would appreciate any and all feedback - negative and positive.
This article discusses alternative remedies, and the odd ingredients often included. It just goes to show you should always read the labels of supplements before you take them. Many include bovine proteins or tissue known to be particularly infections in a BSE infected cow.
And finally, an article discussing how rogue proteins may also be responsible for Alzheimer's.
The website is coming along very well. The test site is almost perfected, which means the launch date will be soon! Once it is up and running, I would appreciate any and all feedback - negative and positive.
Monday, June 1, 2009
Articles of Interest
I apologize for the delay in postings, but I have been out of town with limited access to the internet. I am now back, and busy sorting through my inbox.
-From Fooddemocracy.com, an article explaining the implications of a recent cow found to have BSE in Canada.
-An Associated Press article discussing the Food Safety Working Group, and Rep. Rosa DeLauro's objections to some of the FDA's propsed changes.
-An article published in the British Medical Journal discussing the recent findings of a study which tested over 63,000 tonsil samples for vCJD. None of the samples tested positive, raising the question of whether vCJD may end up affecting fewer people than previously thought.
-From Fooddemocracy.com, an article explaining the implications of a recent cow found to have BSE in Canada.
-An Associated Press article discussing the Food Safety Working Group, and Rep. Rosa DeLauro's objections to some of the FDA's propsed changes.
-An article published in the British Medical Journal discussing the recent findings of a study which tested over 63,000 tonsil samples for vCJD. None of the samples tested positive, raising the question of whether vCJD may end up affecting fewer people than previously thought.
Bone Marrow Donation
As I am sure most of you out there in the CJD community know, blood relatives of CJD sufferers are prohibited from donating blood or organs, even if it is not a genetic form of the disease. While I know (and respect) that this is done in an abundance of caution, it still bothers me that I am prohibited from helping others because of a disease I will most likely never get. If you feel this way too, I would encourage you to look into joining the bone marrow donor registry. At this time, there is no prohibition donating bone marrow. You can visit the National Marrow Donor Program website for more information.
Thursday, May 14, 2009
Secretary Sebelius Statement at Food Safety Working Group
I found this article, which has a transcript of the statement Health and Human Services Secretary Kathleen Sebelius made to the Food Safety Working Group yesterday. I personally am encouraged that she seems to recognize the importance of prevention over damage control. Her remarks are fairly short and worth the read.
Food Safety Working Group
President Obama's Food Safety Working Group had what I believe to be its first meeting yesterday. I am waiting for audio to be put online, as I missed the live stream, but I want to direct you all to their new website. You can subscribe to email updates, and it also directs to places you can make comments or suggestions for the group to consider. I am working on getting some requests together to submit, and any concerns you would like to see addressed are welcome too. Either submit on your own, or let me know and I will try and include them with mine - or both.
Monday, May 11, 2009
Website
We're running a little behind schedule to get the website up and running, but the prototype looks great! I am working on getting the information together to put on it, and hopefully it will be operational in the next few weeks. More information to come!
Tuesday, May 5, 2009
BSE and Oprah
This article was actually written about a decade ago, but I think it accurately describes the length the beef industry will go to quiet those who speak out about BSE. I wouldn't call the article unbiased, but it is very informative and goes in-depth about the lawsuit against Oprah after her comments on-air that she was no longer going to eat beef. I found it interesting, and hope you do too.
I am reading the book "Fast Food Nation" Eric Schlosser. I am not finished with it yet, but it is incredibly insightful into the practices of the fast food and meat-packing industries. To the point I am at in the book, BSE has only been mentioned in passing, but still a very interesting read and gives a lot of insight into the food we eat. It is a little graphic at some points, so beware if you have a particularly weak stomach. I also watched the movie based on the book, and the book is much better and more indepth.
I am reading the book "Fast Food Nation" Eric Schlosser. I am not finished with it yet, but it is incredibly insightful into the practices of the fast food and meat-packing industries. To the point I am at in the book, BSE has only been mentioned in passing, but still a very interesting read and gives a lot of insight into the food we eat. It is a little graphic at some points, so beware if you have a particularly weak stomach. I also watched the movie based on the book, and the book is much better and more indepth.
Tuesday, April 28, 2009
Does Anyone Watch 24?
I have now come across two references on websites to Jack Bauer on 24 being infected with mad cow disease. I would have thought there would be more stuff on the internet about it, but I am curious. Any 24 watchers out there in the know? And if this is the case, is anything about it even remotely accurate?
Thursday, April 23, 2009
Feed Ban Rules Implemented -
Below is a press release issued yesterday by the FDA. Thanks to everyone for submitting comments. It's nice to know sometimes they listen to us! Now, let's just hope they don't repeatedly extend the compliance date.
April 22, 2009
FDA Announces Confirmation of the Effective Date of the BSE Final Rule
The Food and Drug Administration today announced that the final rule entitled ‘‘Substances Prohibited From Use in Animal Food or Feed,’’ will become effective on April 27, 2009. However, to allow renderers additional time to comply with the new requirements, the Agency has established a compliance date of October 26, 2009. The additional 6 months will provide time for those affected to identify appropriate methods for disposing of material prohibited from use in animal feed by this rule. FDA is encouraging affected parties who are able to begin complying with the rule to do so as soon as possible.
In the April 9, 2009, Federal Register FDA proposed to delay the effective date of the final rule for 60 days and provided a period of 7 days for public comment. The agency received over 400 comments from state and national cattle producer organizations, individual cattle producers, renderers, meat processors, dairy organizations, State agriculture agencies, and consumers.
Many of the comments indicated that certain entities were not adequately prepared to comply with the final rule and that adequate alternative carcass disposal methods had not been developed. However, a significant number of comments received opposed delaying the effective date of the final rule due to public and animal health concerns.
In consideration of all comments received, FDA believes the most appropriate action is to confirm the April 27, 2009, effective date, and establish a compliance date of October 26, 2009, for those who need additional time to address compliance and implementation concerns.
FDA will conduct outreach to affected stakeholders to help them comply with the rule. The Agency will hold a 50-state call to discuss the disposal issues in various states or regions and will engage others affected by the rule to assist as much as possible with meeting challenging carcass disposal issues by the October 26, 2009 compliance date. FDA also plans on finalizing the Small Entities Compliance Guide #195 for Renderers to provide additional information specific to the concerns of the rendering industry.Questions may be directed to Burt Pritchett, Center for Veterinary Medicine (HFV-22), FDA, 7519 Standish Place, Rockville, MD 20855, 240-453-6860, burt.pritchett@fda.hhs.gov.
For additional information, please see http://www.federalregister.gov/OFRUpload/OFRData/2009-09466_PI.pdf and http://www.fda.gov/cvm/bsetoc.html.
April 22, 2009
FDA Announces Confirmation of the Effective Date of the BSE Final Rule
The Food and Drug Administration today announced that the final rule entitled ‘‘Substances Prohibited From Use in Animal Food or Feed,’’ will become effective on April 27, 2009. However, to allow renderers additional time to comply with the new requirements, the Agency has established a compliance date of October 26, 2009. The additional 6 months will provide time for those affected to identify appropriate methods for disposing of material prohibited from use in animal feed by this rule. FDA is encouraging affected parties who are able to begin complying with the rule to do so as soon as possible.
In the April 9, 2009, Federal Register FDA proposed to delay the effective date of the final rule for 60 days and provided a period of 7 days for public comment. The agency received over 400 comments from state and national cattle producer organizations, individual cattle producers, renderers, meat processors, dairy organizations, State agriculture agencies, and consumers.
Many of the comments indicated that certain entities were not adequately prepared to comply with the final rule and that adequate alternative carcass disposal methods had not been developed. However, a significant number of comments received opposed delaying the effective date of the final rule due to public and animal health concerns.
In consideration of all comments received, FDA believes the most appropriate action is to confirm the April 27, 2009, effective date, and establish a compliance date of October 26, 2009, for those who need additional time to address compliance and implementation concerns.
FDA will conduct outreach to affected stakeholders to help them comply with the rule. The Agency will hold a 50-state call to discuss the disposal issues in various states or regions and will engage others affected by the rule to assist as much as possible with meeting challenging carcass disposal issues by the October 26, 2009 compliance date. FDA also plans on finalizing the Small Entities Compliance Guide #195 for Renderers to provide additional information specific to the concerns of the rendering industry.Questions may be directed to Burt Pritchett, Center for Veterinary Medicine (HFV-22), FDA, 7519 Standish Place, Rockville, MD 20855, 240-453-6860, burt.pritchett@fda.hhs.gov.
For additional information, please see http://www.federalregister.gov/OFRUpload/OFRData/2009-09466_PI.pdf and http://www.fda.gov/cvm/bsetoc.html.
Friday, April 10, 2009
FDA Food Ban
The CJD Foundation sent out an email to its members yesterday regarding a comment period on proposed delays to the feed ban set to go into effect later this month. I've pasted the email below in its entirety. Please help out by sending the attached letter in, or writing a personal one of your own. And thanks to the CJD Foundation for getting the word out about this!
The CJD Foundation has issued this information in partnership with R-CALF (This is not a News Release)
To: The CJD Foundation Family Members and Friends and R-CALF USA Members and Affiliates
From: Florence Kranitz, President, the CJD Foundation and Bill Bullard, R-CALF USA CEO
Date: April 9, 2009
Subject: FDA Comment Period on Feed Ban Starts Today – Ends April 16 Please consider commenting on FDA’s plan to delay the scheduled April 27, 2009, implementation of the BSE feed ban needed to address the heightened risk of BSE we already have assumed by allowing high-risk Canadian cattle into the United States. Below is a short background, instructions on how to submit comments, and a sample letter you can use to submit your comments. We need thousands of comments on this issue! Background: Our April 7, Member Alert provided more background on this issue but today the U.S. Food and Drug Administration (FDA) has opened a 7-day public comment period to solicit public comments on whether the FDA should delay implementation of its upgraded bovine spongiform encephalopathy (BSE) feed ban. The U.S. Department of Agriculture (USDA) and the FDA have purposely positioned consumers and the cattle industry between a rock and a hard place. There is no doubt that cattle producers who rely on rendering services to pick up deadstock will experience a hardship if the FDA’s new BSE feed ban rule takes effect. The government is banking on cattle producers to support this last minute delay for this very reason. But, the government has purposely backed our cattle industry into a corner and we should not quietly allow this kind of manipulation. The government, through the USDA, has exposed U.S. consumers and the U.S. cattle herd to an unacceptable risk of BSE by allowing Canada’s highest-risk cattle – cattle over 30 months (OTM) of age – to freely enter the U.S. food supply, feed supply, and cattle herd. USDA should not have allowed these higher-risk cattle into the U.S. until after it determined if it was feasible to assume the additional costs necessary to mitigate this increased risk – the cost of upgrading the U.S. feed ban. But this is exactly what has happened and this is what we are now faced with. We have to demand that our government do what is right by acting immediately to protect the health and safety of all U.S consumers and cattle herds. They must eliminate the source of the higher BSE risk by closing the border to OTM Canadian cattle and by immediately implementing the upgraded feed ban needed to minimize this higher risk. There are no responsible alternatives.
Below is a sample letter you can use to submit your comments to the FDA. We need thousands of comments submitted within the next 7 days, so please circulate this Alert as widely as possible and encourage as many people as possible to submit comments as well.
How to submit your written comments (Deadline April 16, 2009):
1. Go to http://www.regulations.gov/
2. Type in FDA-2002-N-0031
3. Click on box that states: “Select to find documents accepting comments or submissions.”
4. Click on: Go>>
5. Click on the balloon shaped icon that states “Send a Comment or Submission.”
6. Follow the instructions on the “Public Comment and Submission Form.”
Sample Comment Letter for Your Use (You are free to use all or part of this letter):
April 9, 2009
Division of Dockets Management (HFA-305)
Food and Drug Administration
5630 Fishers Lane, Rm. 1061Rockville, MD 20852
Re: Docket Number: FDA-2002-N-0031 (formerly Docket No. 2002N-0273)
Dear Administrator,
As the family member of a loved one who has died of a Creutzfeldt-Jakob Disease (CJD), one form of which can be acquired by ingesting BSE contaminated beef, I want to express my outrage at the recent announcement of the U.S. Food and Drug Administration’s (FDA) delay of its April 17, 2009 scheduled implementation of the final rule titled “Substances Prohibited from Use in Animal Food or Feed,” commonly referred to as the 2008 BSE final rule. They have made this announcement with full knowledge that the U.S. Department of Agriculture (USDA) continues to subject U.S. consumers and the U.S. cattle herd to a heighted risk of bovine spongiform encephalopathy (BSE) from imports of live Canadian cattle, particularly imports of Canadian cattle over 30 months (OTM) of age.
In Canada the disease occurrence is between three cases per million to eight cases per million cattle. The U.S. Centers for Disease Control and Prevention (CDC) states the level of BSE prevalence in the Canadian cattle herd is 18-fold to 48-fold higher than the prevalence estimated in the U.S. cattle herd. Just in 2008, nearly 1.6 million Canadian cattle were imported into the United States. By delaying the implementation of the Feed Ban the FDA risks yet another break in an already severely compromised food safety firewall.
When USDA reopened the U.S. border in 2007 to Canada’s highest-risk cattle population – OTM cattle – its risk modeling based on a Canadian BSE prevalence of fewer than 4 cases per million predicted that the U.S. would import over 100 head of BSE-infected cattle from Canada over the next 20 years. In addition, the risk modeling showed that human exposure to BSE would increase. However, as the CDC explained, the BSE prevalence in Canada could well be 8 cases per million, meaning that USDA likely has grossly underestimated the risk of introducing BSE-infected cattle into the U.S. as a result of allowing OTM Canadian cattle imports. Canada already has detected 16 native cases of BSE in its OTM cattle herd, 10 of which were born after the 1997 feed ban. The most recent of these cases was detected just last November. Nine of Canada’s BSE-infected cattle met USDA’s age requirements to be exported to the United States, as they were born after March 1, 1999, the date after which USDA erroneously claims BSE-infectivity was no longer circulating in Canada.
The current U.S. feed ban implemented in 1997 is comparable to the initial Canadian feed ban also implemented in 1997. Canada’s feed ban proved ineffective at preventing the spread of BSE in Canada. Despite the repeated urging of international scientists, Canada resisted any upgrades to its feed ban until after it detected multiple BSE cases in cattle born years after its 1997 feed ban. Canada’s July 2007 upgraded feed ban now protects Canadian consumers against the spread of BSE from Canadian cattle by closing known transmission routes, including cross-contamination and inadvertent feeding of contaminated cattle parts. It is unthinkable that the FDA would not afford U.S. consumers the same level of protection against these same Canadian cattle that are imported into the United States.
The FDA cannot legitimately argue that its current feed ban implemented in 1997, which is nearly identical to Canada’s original feed ban also implemented in 1997, is any more effective at mitigating Canada’s heightened BSE risk within U.S. borders than it was in mitigating Canada’s heightened BSE risk in Canada. Nor can FDA ignore the scientific evidence that overwhelmingly shows that the current U.S. feed ban is insufficient to mitigate the heightened BSE risk associated with OTM cattle imported from Canada. These higher-risk OTM Canadian cattle are entering the U.S. at the rate of several thousand per week, are being commingled in the U.S. cattle herd where some would be expected to die, and are entering both the U.S. food system as well as the U.S. animal feed system. The U.S. already is accepting Canada’s higher BSE risk without the protections necessary to mitigate that higher risk.
The FDA cannot bury its head in the sand and pretend the upgraded feed ban contained in the 2008 BSE final rule is not urgently needed to mitigate the increased BSE risk associated with the importation of millions of Canadian cattle. In fact, the FDA already has failed to timely implement an upgraded feed ban, which should have been implemented before USDA began to expose U.S. consumers and the U.S. cattle herd to Canada’s heightened BSE risk.
The FDA has an absolute responsibility to protect the health and safety of U.S. consumers and the U.S. cattle herd against this foreign animal disease which is always 100% fatal, and has been known to cross the species barrier infecting humans with variant Creutzfeldt-Jakob Disease (vCJD), the human form of BSE. We need only look to the United Kingdom’s recent tragic experience when it was discovered that BSE had crossed the species barrier to humans. Thus far this preventable disease has caused the deaths of 168 young adults. The long incubation period (which can be up to 40 years), means that tragically, there could be many more cases in the future. The FDA must break away from the manipulative actions by corporate-controlled, self-serving trade associations that have caused both FDA and USDA to endanger the health and safety of U.S. consumers and the U.S. cattle herd by exposing them to an unnecessary and avoidable risk of BSE.
The USDA must immediately eliminate the source of this heightened BSE risk by prohibiting the importation of OTM Canadian cattle, and the FDA must immediately implement the 2008 BSE final rule to mitigate this heightened risk. There are no responsible alternatives.
Sincerely,
The CJD Foundation has issued this information in partnership with R-CALF (This is not a News Release)
To: The CJD Foundation Family Members and Friends and R-CALF USA Members and Affiliates
From: Florence Kranitz, President, the CJD Foundation and Bill Bullard, R-CALF USA CEO
Date: April 9, 2009
Subject: FDA Comment Period on Feed Ban Starts Today – Ends April 16 Please consider commenting on FDA’s plan to delay the scheduled April 27, 2009, implementation of the BSE feed ban needed to address the heightened risk of BSE we already have assumed by allowing high-risk Canadian cattle into the United States. Below is a short background, instructions on how to submit comments, and a sample letter you can use to submit your comments. We need thousands of comments on this issue! Background: Our April 7, Member Alert provided more background on this issue but today the U.S. Food and Drug Administration (FDA) has opened a 7-day public comment period to solicit public comments on whether the FDA should delay implementation of its upgraded bovine spongiform encephalopathy (BSE) feed ban. The U.S. Department of Agriculture (USDA) and the FDA have purposely positioned consumers and the cattle industry between a rock and a hard place. There is no doubt that cattle producers who rely on rendering services to pick up deadstock will experience a hardship if the FDA’s new BSE feed ban rule takes effect. The government is banking on cattle producers to support this last minute delay for this very reason. But, the government has purposely backed our cattle industry into a corner and we should not quietly allow this kind of manipulation. The government, through the USDA, has exposed U.S. consumers and the U.S. cattle herd to an unacceptable risk of BSE by allowing Canada’s highest-risk cattle – cattle over 30 months (OTM) of age – to freely enter the U.S. food supply, feed supply, and cattle herd. USDA should not have allowed these higher-risk cattle into the U.S. until after it determined if it was feasible to assume the additional costs necessary to mitigate this increased risk – the cost of upgrading the U.S. feed ban. But this is exactly what has happened and this is what we are now faced with. We have to demand that our government do what is right by acting immediately to protect the health and safety of all U.S consumers and cattle herds. They must eliminate the source of the higher BSE risk by closing the border to OTM Canadian cattle and by immediately implementing the upgraded feed ban needed to minimize this higher risk. There are no responsible alternatives.
Below is a sample letter you can use to submit your comments to the FDA. We need thousands of comments submitted within the next 7 days, so please circulate this Alert as widely as possible and encourage as many people as possible to submit comments as well.
How to submit your written comments (Deadline April 16, 2009):
1. Go to http://www.regulations.gov/
2. Type in FDA-2002-N-0031
3. Click on box that states: “Select to find documents accepting comments or submissions.”
4. Click on: Go>>
5. Click on the balloon shaped icon that states “Send a Comment or Submission.”
6. Follow the instructions on the “Public Comment and Submission Form.”
Sample Comment Letter for Your Use (You are free to use all or part of this letter):
April 9, 2009
Division of Dockets Management (HFA-305)
Food and Drug Administration
5630 Fishers Lane, Rm. 1061Rockville, MD 20852
Re: Docket Number: FDA-2002-N-0031 (formerly Docket No. 2002N-0273)
Dear Administrator,
As the family member of a loved one who has died of a Creutzfeldt-Jakob Disease (CJD), one form of which can be acquired by ingesting BSE contaminated beef, I want to express my outrage at the recent announcement of the U.S. Food and Drug Administration’s (FDA) delay of its April 17, 2009 scheduled implementation of the final rule titled “Substances Prohibited from Use in Animal Food or Feed,” commonly referred to as the 2008 BSE final rule. They have made this announcement with full knowledge that the U.S. Department of Agriculture (USDA) continues to subject U.S. consumers and the U.S. cattle herd to a heighted risk of bovine spongiform encephalopathy (BSE) from imports of live Canadian cattle, particularly imports of Canadian cattle over 30 months (OTM) of age.
In Canada the disease occurrence is between three cases per million to eight cases per million cattle. The U.S. Centers for Disease Control and Prevention (CDC) states the level of BSE prevalence in the Canadian cattle herd is 18-fold to 48-fold higher than the prevalence estimated in the U.S. cattle herd. Just in 2008, nearly 1.6 million Canadian cattle were imported into the United States. By delaying the implementation of the Feed Ban the FDA risks yet another break in an already severely compromised food safety firewall.
When USDA reopened the U.S. border in 2007 to Canada’s highest-risk cattle population – OTM cattle – its risk modeling based on a Canadian BSE prevalence of fewer than 4 cases per million predicted that the U.S. would import over 100 head of BSE-infected cattle from Canada over the next 20 years. In addition, the risk modeling showed that human exposure to BSE would increase. However, as the CDC explained, the BSE prevalence in Canada could well be 8 cases per million, meaning that USDA likely has grossly underestimated the risk of introducing BSE-infected cattle into the U.S. as a result of allowing OTM Canadian cattle imports. Canada already has detected 16 native cases of BSE in its OTM cattle herd, 10 of which were born after the 1997 feed ban. The most recent of these cases was detected just last November. Nine of Canada’s BSE-infected cattle met USDA’s age requirements to be exported to the United States, as they were born after March 1, 1999, the date after which USDA erroneously claims BSE-infectivity was no longer circulating in Canada.
The current U.S. feed ban implemented in 1997 is comparable to the initial Canadian feed ban also implemented in 1997. Canada’s feed ban proved ineffective at preventing the spread of BSE in Canada. Despite the repeated urging of international scientists, Canada resisted any upgrades to its feed ban until after it detected multiple BSE cases in cattle born years after its 1997 feed ban. Canada’s July 2007 upgraded feed ban now protects Canadian consumers against the spread of BSE from Canadian cattle by closing known transmission routes, including cross-contamination and inadvertent feeding of contaminated cattle parts. It is unthinkable that the FDA would not afford U.S. consumers the same level of protection against these same Canadian cattle that are imported into the United States.
The FDA cannot legitimately argue that its current feed ban implemented in 1997, which is nearly identical to Canada’s original feed ban also implemented in 1997, is any more effective at mitigating Canada’s heightened BSE risk within U.S. borders than it was in mitigating Canada’s heightened BSE risk in Canada. Nor can FDA ignore the scientific evidence that overwhelmingly shows that the current U.S. feed ban is insufficient to mitigate the heightened BSE risk associated with OTM cattle imported from Canada. These higher-risk OTM Canadian cattle are entering the U.S. at the rate of several thousand per week, are being commingled in the U.S. cattle herd where some would be expected to die, and are entering both the U.S. food system as well as the U.S. animal feed system. The U.S. already is accepting Canada’s higher BSE risk without the protections necessary to mitigate that higher risk.
The FDA cannot bury its head in the sand and pretend the upgraded feed ban contained in the 2008 BSE final rule is not urgently needed to mitigate the increased BSE risk associated with the importation of millions of Canadian cattle. In fact, the FDA already has failed to timely implement an upgraded feed ban, which should have been implemented before USDA began to expose U.S. consumers and the U.S. cattle herd to Canada’s heightened BSE risk.
The FDA has an absolute responsibility to protect the health and safety of U.S. consumers and the U.S. cattle herd against this foreign animal disease which is always 100% fatal, and has been known to cross the species barrier infecting humans with variant Creutzfeldt-Jakob Disease (vCJD), the human form of BSE. We need only look to the United Kingdom’s recent tragic experience when it was discovered that BSE had crossed the species barrier to humans. Thus far this preventable disease has caused the deaths of 168 young adults. The long incubation period (which can be up to 40 years), means that tragically, there could be many more cases in the future. The FDA must break away from the manipulative actions by corporate-controlled, self-serving trade associations that have caused both FDA and USDA to endanger the health and safety of U.S. consumers and the U.S. cattle herd by exposing them to an unnecessary and avoidable risk of BSE.
The USDA must immediately eliminate the source of this heightened BSE risk by prohibiting the importation of OTM Canadian cattle, and the FDA must immediately implement the 2008 BSE final rule to mitigate this heightened risk. There are no responsible alternatives.
Sincerely,
Monday, April 6, 2009
Slowly But Surely
It seems like I've been doing a little bit of everything the past week! I met with Wendy, a good friend of mine who is going to design the website. I should have the design in the next week or so, and then it is just up to me to get the information written up for it. We have a scheduled launch date of May 1. Once the site is up and running, I plan to move the blog over to the website so watch for a notice of the switch!
I talked to the Virginia Department of Health, trying to get some more information about the state's reporting requirements. I am a Virginia resident, so I figured it was probably best to start there. From what I have gathered, state reporting requirements only require reporting to the state's health department, not the CDC. Given this, I think it is very important to start working on national reporting requirements. I am not sure the best way to go about this yet, but it is something I will be talking to people about to figure out how to get it done.
I also talked to the delegate in the Virginia House of Delegates that I used to work for. He was very helpful in giving me some suggestions, and also told me I could come to him if I needed legislation introduced. I'm very glad to know I have someone I can go to for advice - and help - if I need it!
There is also an opportunity that may be coming up where I can start to get the word out more - not only about starting my organization, but about CJD and prion diseases in general. I will post more on this later if it ends up working out.
Finally, I will direct you to an interesting article I came across regarding prions in yeast. It seems it may open up some new avenues for research, and assist in determining why prions have both the normal and misfolded forms.
I talked to the Virginia Department of Health, trying to get some more information about the state's reporting requirements. I am a Virginia resident, so I figured it was probably best to start there. From what I have gathered, state reporting requirements only require reporting to the state's health department, not the CDC. Given this, I think it is very important to start working on national reporting requirements. I am not sure the best way to go about this yet, but it is something I will be talking to people about to figure out how to get it done.
I also talked to the delegate in the Virginia House of Delegates that I used to work for. He was very helpful in giving me some suggestions, and also told me I could come to him if I needed legislation introduced. I'm very glad to know I have someone I can go to for advice - and help - if I need it!
There is also an opportunity that may be coming up where I can start to get the word out more - not only about starting my organization, but about CJD and prion diseases in general. I will post more on this later if it ends up working out.
Finally, I will direct you to an interesting article I came across regarding prions in yeast. It seems it may open up some new avenues for research, and assist in determining why prions have both the normal and misfolded forms.
Monday, March 30, 2009
Past Two Weeks
I am sorry (and a little shamed) to admit that I have not accomplished much in the past two weeks. I made a lot of good progress and then just kind of stalled. Part of it is that I was out of town for a wedding for several days, and it was difficult to start a project knowing I was going to be interrupted in the middle of it. I have pretty much just been trying to catch up on some reading (work reading, not casual reading) and planning my next steps. I promise to be back on top of things from here on out! I have a meeting with my website designer on Wednesday to start figuring out what we are going to do with it. I will hopefully have some good things to report soon.
Tuesday, March 17, 2009
Updates on Organization Development
Yesterday, I had a great discussion with Marissa of the CJD Foundation. It turns out she had already found my blog, and was therefore expecting my phone call. We had a good conversation about what I am trying to do, what the CJD Foundation is trying to do, and what they are legally able to do within the parameters of their non-profit designation.
A main point I took away from this conversation is that if I want to turn my advocacy efforts into a paying position, which is ultimately my goal, I will need to form my own organization. This being the case, I am going to need to find a lawyer with experience in non-profits to determine exactly what designation I will need to obtain from the IRS. While I suspect it will still take considerable time before I am able to raise enough money to pay myself a salary, getting the ball rolling on forming the organization will hopefully speed things up down the road.
Today, I spoke with contacts at both the CDC and the National Prion Disease Pathology Surveillance Center in an effort to find a detailed list of state reporting requirements. I was not able to get specifics from each state, but I now have in my posession a list of whether or not the state has reporting requirements. It appears I am going to need to call each state's health department individually to find out more specifics. It's going to take some time, but I really think having this information will be beneficial to determine where we need focus our efforts.
Things seem to be moving along nicely, and I am very thankful for the positive reception I have received so far. I am looking forward to being involved in something I care so much about!
A main point I took away from this conversation is that if I want to turn my advocacy efforts into a paying position, which is ultimately my goal, I will need to form my own organization. This being the case, I am going to need to find a lawyer with experience in non-profits to determine exactly what designation I will need to obtain from the IRS. While I suspect it will still take considerable time before I am able to raise enough money to pay myself a salary, getting the ball rolling on forming the organization will hopefully speed things up down the road.
Today, I spoke with contacts at both the CDC and the National Prion Disease Pathology Surveillance Center in an effort to find a detailed list of state reporting requirements. I was not able to get specifics from each state, but I now have in my posession a list of whether or not the state has reporting requirements. It appears I am going to need to call each state's health department individually to find out more specifics. It's going to take some time, but I really think having this information will be beneficial to determine where we need focus our efforts.
Things seem to be moving along nicely, and I am very thankful for the positive reception I have received so far. I am looking forward to being involved in something I care so much about!
New York Times Op-ed on Proposed Animal Tracking
Thanks to Marie for pointing out this op-ed to me. A few days ago I directed you to this article, which discusses the efforts by several congressman to implement a livestock tracking system. The ope-ed, from the New York Times, is by a small farmer and discuses the implications of this proposal on small farmers. It is definitely worth the read, just ensure you know both sides of the issue.
Monday, March 16, 2009
Ban on Downer Cows
President Obama has made permanant the ban on downer cows in the food supply, according to this MSNBC article. The article mentions the risk downer cattle pose of contaminating the food supply with BSE. President Obama is also working to update food safety laws through the creation of the Food Safety Working Group and has appointed Margaret Hamburg as the Food and Drug Administration commissioner.
I'm trying to find some more information on the Food Safety Working Group to see what exactly their mission is and how it might be beneficial or detrimental to what I'm working on here. I'll keep you updated as I find out more. Thanks to my mom for pointing out the article.
I'm trying to find some more information on the Food Safety Working Group to see what exactly their mission is and how it might be beneficial or detrimental to what I'm working on here. I'll keep you updated as I find out more. Thanks to my mom for pointing out the article.
Friday, March 13, 2009
Interesting Articles
I came across several interesting articles on Reuters.com today. The first is actually from early February, and discusses the possibility of a blood test to identify BSE in cattle before they are symptomatic. They have already had success with the test in identifying CWD in elk. The second is discussing the finding from a clinical trial of quinacrine for CJD patients. Let's just say it didn't go well. The final article discusses several congressmen's attempts to develop a cattle tracking system. This would enable them to trace cattle movements throughout their lives. If a cattle is later found to have a transmissible disease, such as BSE, determining where they may have contracted it and what other animals may have been exposed will become possible.
Tuesday, March 10, 2009
New Features
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!
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!
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.
Sunday, January 11, 2009
The Purpose
I lost my father to sporadic CJD in October of 2007. I am sure the story of my father's illness and the unanswered questions will be all too familiar for most of you who have found your way to this site. My father's story will be told on this site, but for right now I would just like to share what my goal is by starting this blog.
I was raised right outside of Washington, D.C. I have a degree in Political Science and have spent several years working in or with state legislatures. Since the death of my father, I feel very strongly that I would like to begin doing advocacy for CJD full-time. Unfortunately, no organization exists in the U.S. that deals specifically with advocacy. Which is not to say that advocacy doesn't happen, just that there is no dedicated organization for it. This blog is my jumping off point. I am tossing around ideas (in my own head and with others) to try and figure out the most effective way to get more advocacy started, whether by working with an existing organization or by forming a new one.
The most important objective, in my opinion, is to begin working to get every state to report CJD cases to the Center for Disease Control (CDC) in Atlanta, GA. Presently, every state has their own requirements, or lack of requirements, regarding this disease. CJD is presently thought to affect roughly one in a million people each year. The actual number could be significantly higher, but we can't know for certain until the reporting requirements are in place to ensure every confirmed case is accounted for.
Other objectives are in the planning phase as well and ideas regarding them will be forthcoming. Please leave your ideas, questions and thoughts as comments. The comments will be moderated to ensure everything is appropriate. I would like for this blog to be a venue for the exchange of legitimate ideas. I appreciate your help in making that happen!
I was raised right outside of Washington, D.C. I have a degree in Political Science and have spent several years working in or with state legislatures. Since the death of my father, I feel very strongly that I would like to begin doing advocacy for CJD full-time. Unfortunately, no organization exists in the U.S. that deals specifically with advocacy. Which is not to say that advocacy doesn't happen, just that there is no dedicated organization for it. This blog is my jumping off point. I am tossing around ideas (in my own head and with others) to try and figure out the most effective way to get more advocacy started, whether by working with an existing organization or by forming a new one.
The most important objective, in my opinion, is to begin working to get every state to report CJD cases to the Center for Disease Control (CDC) in Atlanta, GA. Presently, every state has their own requirements, or lack of requirements, regarding this disease. CJD is presently thought to affect roughly one in a million people each year. The actual number could be significantly higher, but we can't know for certain until the reporting requirements are in place to ensure every confirmed case is accounted for.
Other objectives are in the planning phase as well and ideas regarding them will be forthcoming. Please leave your ideas, questions and thoughts as comments. The comments will be moderated to ensure everything is appropriate. I would like for this blog to be a venue for the exchange of legitimate ideas. I appreciate your help in making that happen!
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