At the suggestion of mmmelody47, I’m starting a thread devoted to taking action to free the flu sequences that the American CDC is currently keeping secret. American scientists outside of the CDC are not allowed to see these sequences. This includes scientists at the National Institutes of Health, who conduct most biomedical science in the US. I’m requesting that everyone who doesn’t agree with this policy contact their elected representatives and ask that the sequences be made to available to all scientists.
A detailed explanation as to why this is necessary can be found here.
Below the line, you’ll find a sample letter that you may use or modify in any way you wish.
If anyone gets a response from their elected officials, please post on this thread.
Dear Elected Official,
I am writing this [letter or email] to express my grave concern regarding the behavior of Dr. Julie Gerberding, Director of the Centers for Disease Control and Prevention (CDC) in reference to a database of flu sequences that the CDC has accumulated. As you know, many of the world’s scientists, including Dr. Gerberding, are very worried that a flu pandemic may start soon. It has been estimated that such a pandemic may kill up to 2 million Americans, mostly young people and children. Many of the measures that we would use to reduce the impact of such a tragic event require the sharing of sequences obtained from flu viruses amongst the world’s scientists. Yet, Dr. Gerberding has prevented most of the scientists of the United States and other countries seeing these sequences, which has impaired their work. None of the public statements made by her or others at the CDC for this behavior are credible. Many suspect that these sequences are being kept secret so that individuals at the CDC can have exclusive access to them while they write papers, a process that may take years. Thus, the lives of millions of Americans are being put at risk to boost the careers of scientists at the CDC.
With respect, I ask that you support legislation that would require the CDC to deposit all of their flu sequences in a database (GenBank) that would be accessible to all of the scientists in the United States and elsewhere so that the spread of dangerous viruses can be monitored and the most effective vaccines be developed. Further, I ask that the legislation require the CDC to deposit their flu virus sequences with 24 hours of completion.
Sincerely,
[your name here]
Thanks for making it easy, just sent to my 2 senators and my congressman.
So did I. My pleasure!
It’s easy, just cut and paste, fill in the blanks and sign your name. And to make it even easier, how to find their address!
Find your Senator: http://www.senate.gov/
Find your Representative: http://www.house.gov/
*****FREE THE SEQUENCES !!!*****
Bump!
Bump -
The number of sequestered sequences continues to rise as new human H5N1 cases are reported in Azerbaijan and the Middle East.
The WHO consultants STILL don’t know how to analyze the data. They think H5N1 evolves via random muttaions, which is nonsense.
Lots of examples of recombination now available at
I don’t mean to be a pain in the butt, but this letter does not seem to be attracting the attention that your humble poster feels that it should. The letter is very well written and extremely important….politicians, especially those that feel that they are “upwardly mobile” for a larger national prominence, i.e. President/Senate/Congress really should hear from everyone on this wiki. Please Monotreme….I know that I could never carry your “academic water” so please accept this suggestion in the spirit that it is meant. The title of the post is not in your face enough….you have to scream the title at the fluwikie readers. OUTRAGE-WRITE YOUR ELECTED OFFICIALS - NOW! The thousands of readers herein could play an important roll in waking up some of these elected officials
mmmelody47, even though I used non-inflammatory language for this thread, I am still being pilloried for some of my more inflammatory comments. So, opinons differ. Hard to walk the line between too much and not enough outrage, it appears.
In any case, I can’t change the title of the thread. However, I have no objection to the title change you suggest if DemFromCT agrees.
Monotreme -
I thought your words were well chosen. I used them as a base when I sent a message to my senators modifying them to meet my particular thoughts.
Thanks for the kick in the butt to get me to do what I should have done earlier.
Having been in the ‘publish or perish’ community early in my life I understand the need to ‘mark your territory’ but it really angers me to think that they willingly would put lives in danger just to publish.
Regards,
Jonny
Thanks Jonny.
Letters just sent via email to both MN senators Norm Coleman & Mark Dayton and house rep Betty McCollum.
Bumped
Here is are some ideas that do work when you want to move the bureaucracy.
First, “In your face does not work.” Do you listen to people who rant and rave at you? - Neither do others.
Second, everyone is responsible to someone in civil service. I have not attempted to move the feds in this way* but I do think there is a way to do it.
If I write to the head of the department, the letter can be ignored (trashed and forgotten). However, if I write to the head of the Department and his boss requesting a reply from the head of the department with a cc to his boss then he knows that his boss knows about the situation and that his boss will ask how the nasty situation with me is going.
The boss will be especially concerned if I have listed an alternative that would create problems for the Department head’s boss. Obviously the more people in the loop the better, such as the chairperson of the board, trustees, and those who support the goals with money.
It works like this, the boss knows that the department heads knows that their collective butts are on the line with the Chairman of the board and the funding sources. Each person in the chain knows that they are going to have to respond up and down the chain and hence your query is responded to. Usually, rather quickly with careful exasperation to the affect, “why did you do this?” Results are what matters. Of course, everything is very nice – nice as all involved can easily dismiss a quack (no pun) and a rant so everything has to be reasonable.
In the current situation with regard to moving CDC, senators and similar people. What moves them?
News articles by “respected” journalists in highly respected papers. Large contributors to political parties, Lobbyists, the ACLU (and kindred organizations), Blacks, Hispanics, the auto industry, big pharm. Each senator receives a lot of money from some group.
I think a reasonable request that sites the need for the request with an explanation of the source of the problem, the dire consequences, and a potential remedy is specified. It is not that all sequences should be released, it is that they should be placed in XX data bank administered by YY for rapid access before the flu hits and 50 million people die as explained by zz organization.
The cc (copies) should be to all parties noted above and others that could affect these people.
I would include in such a (set) of letters that I will be following up on such and such a date. Remember that you are writing to all of these people at once though the letter is addressed to the department head.
Now I can go back and ask a reporter if they followed up and tell him that, because he has not had time I will cc his boss about this important topic.
The idea is that everyone knows that everyone knows and accountability is requested. Hell, you could get the UN, Russia, England and God knows who all pushing for this thing.
The bottom line is you have to be right, have a plan, and be able to explain it reasonably in an executive summary. Even Bush is in trouble in this scenario.
What is the goal – anger, or capturing the data.
It will take a concerted effort, those who know virology, politics, reporters, funding sources, etc need to cooperate. A few top scientists would help and they can be contacted via email and given the whole scenario. This need not (and should not) be any sort of secret tactic. The more open the approach is the less likely that anyone who starts it will get bitten back.
So, JoeW, what do you think of my letter at the top? What would you change? Journalists have raised the issue, so far to no effect. So have a number of top scientists, also with no impact. The MSM continues to treat Gerberding with kidd gloves. Also, there is no lobby pushing for release of the sequences. Maybe we should form one.
Couple of comments on your letter.
First, I like the tone, it is not “in your face.”
You ask for legislation. Is that necessary and is it doable by one or more people? I doubt it.
Second, could you suggest a better solution that is doable, such as, these sequences need to be deposited at xx so that the world community of scientists can work on this problem.
Third, the letter has not implied a “threat.” I would address it to the director of CDC with a request for a response concerning why these data are not being made available.
Who is her boss, or who has influence on her? They need to get a copy.
You have not indicated the dire consequences for which she and her superiors would be held accountable.
There is a need to cc journalists who should be interested in the serious nature of this problem.
Who are her political superiors (that would be able to influence her). They too need a copy with their name listed on the CC.
Who in the media would find this topic and the possibility of a scandal interesting? They need to be cc with a cc to their boss.
Can you enlist the aid of any well known and respected scientists, preferably onshore and off shore to support the request? I am sure there are other things that can be added. The idea is to create pressure that she cannot withstand. She will have to come up with some answers that are credible.
Now we have a team that can do some serious damage. Watch yourself Monotreme. If you go to the press you’ll have to take your mask off.
JoeW, good comments. Here is the Organization chart for Health and Human Services.
Secretary Leavitt is Dr. Gerberding’s boss. President Bush is Secretary Leavitt’s boss. You will see that the NIH is at the same “level” as the CDC. The NIH deposits all of their flu sequences very quickly. The CDC hides almost all of their sequences. So, I interpret this to mean the problem is with Dr. Gerberding, not Secretary Leavitt.
In my letter, I do suggest the sequences should be deposited in GenBank, but perhaps a law is not required or practical. Secretary Leavitt or President Bush could simply order Gerberding to release the CDC sequences. I have no reason to believe they would oppose this. Both the NIH and the Navy (NAMRU) have deposited the H5N1 sequences they obtained in GenBank.
I don’t think Gerberding would care how many letters she received, but you may be right about the effectiveness of cc’ing the letters to Secretary Leavitt.
Both Declan Butler of Nature and Helen Branswell of the Canadian Press are well aware of the problem and seem to be supportive of releasing the sequences, although I hesitate to speak for them. It would be nice if we could get someone from one of the cable news shows to support this, but I don’t know whether any of them would be prepared to take on Gerberding.
Tom DVM, anyone who really wants to find out who I am probably already knows. No black helicopters circling my house yet ;-). I would prefer to keep my theoretical anonymity for a bit longer as I am trying to work for preparedness under my real name. I’m much more polite as myself than as Monotreme.
Monotreme. Don’t do it. There is no need to. There are lots of us at flu wiki that can do it for you and with you at the same time. Like I said before, they all read this site and you have already had an effect. The timing of their response indicates that.
Tom DVM, thanks for you kind words. I know people from relevant agencies come to Flu Wiki and that what they read on the forum “affects” them, ie, makes some of them hopping mad. But I think the impact of journalists like Declan Butler and Helen Branswell is probably much greater. Still, I think the more people who shine a light on the despicable behaviour of people like Dr. Gerberding, the better.
Monotreme just keep doing what you do best…remember Dr. Douglas. You may have lost a little momentum with flu wiki down, but it will come back.
Sorry, there are many ethical scientists like Dr. Douglas in many agencies around the world and they will only put up with so much secrecy. There is a tipping point about these types of things also.
If the Navy and NIH are depositing then your letter to CDC should state this and ask why CDC is not depositing. You also need the dire consequences part that makes her responsible. Then CC Levitt, and Bush. I also think that enlisting the aid of Butler and Braswell would be a good place to start. The heck with hesitancy, with your qualifications and the qualifications of others such as the Reveres and others on the net some sort of letter signed by several people with CC to CBS, NBC, etc. Of course I would want to get it to the science editors with ccs to their bosses too. One network will want to scoop another so they can be played against each other to the extent possible. Nothing like a “deep throat” to get the journalists interested.
Given that the administration is apparently already trying to “manage” this I think that you and some colleagues already have some leverage. The dire consequences need to be spelled out by you and others to educate the journalists so that they have some hard questions to ask.
I do think that it takes people who are knowledable and involved to start this ball rolling. Credibility is a major issue here for journalists, financial backers, etc. BYW someone with an interest in politics needs to look up the big fish financial backers who might be inclined to become interested in this topic from personal, financial, humanitarian, ethical perspectives.
I think you get the idea, it is about personal pressure points that are embarrassing, politicians do not want the smell of blood in the water because it brings out the sharks, and you are out looking for sharks with some very bloody fish.
I would think that enlisting some people from the Democratic Party might be a good idea. You only need to hand them a fish head. The info needs to go to various chairs and the party leaders. I’ll bet DemFromCt might be of help here. How about getting the Black caucus involved, especially with the dire consequences, panic in the street and potential riots, etc, etc.
As you see it is not about legislation it is about pressure.
JoeW - from a former “flatfoot,” BRAVO.
JoeW, all good ideas. I’ll rework the letter and post a new version latter.
FYI, I complained about the lack of pressure from the Democrats on pandemic preparedness, in general, over at Effect Measure last summer (I think). Revere agreed. Senator Obama did introduce some legislation, but there was little follow-up. But perhaps a focused campaign on the CDC flu sequences might have better results.
JoeW, below you’ll see a revised letter, this time directed to Dr. Gerberding. Please critique it. mmmelody47 or anyone else, please critique as well. When it’s ready, I’ll post it on a new thread.
Dear Dr. Gerberding,
I am writing this [letter or email] to express my grave concern regarding the failure of scientists at the Centers for Disease Control and Prevention (CDC) to deposit influenza sequences in GenBank. As you know, many of the world’s scientists are very worried that a flu pandemic may start soon. It has been estimated that such a pandemic may kill up to 2 million Americans, mostly young people and children. Many of the measures that we would use to reduce the impact of such a tragic event require the sharing of sequences obtained from flu viruses amongst the world’s scientists. Examples of activities that require these sequences include surveillance and vaccine development. Yet, most of the scientists of the United States and other countries are unable to examine influenza sequences acquired by the CDC, which has impaired their work.
The National Institutes of Health (NIH), in particular, the National Institute of Alergy and Infectious Diseases (NIAID) deposits all of the influenza sequences they obtain in GenBank very quickly. The United States Naval Medical Research Units have deposited H5N1 sequences that they acquired in GenBank. Since the CDC has published the sequence of the 1918 virus, national security does not seem to be the issue. Large numbers of nucleotide sequences can easily be deposited in GenBank through batch processing, so time and effort is not the issue.
There are concerns that these sequences are being kept secret so that individuals at the CDC can have exclusive access to them while they write papers, a process that may take years. Thus, the lives of millions of Americans may being put at risk to boost the careers of scientists at the CDC.
With respect, I ask that you require the scientists at the CDC deposit all of their flu sequences in a database (GenBank) that would be accessible to all of the scientists in the United States and elsewhere so that the spread of dangerous viruses can be monitored and the most effective vaccines be developed. Further, I ask that you require CDC scientists to deposit their flu virus sequences with 24 hours of completion.
Sincerely,
[your name here]
Important cc Secretary Leavitt and President Bush
Monotreme – at 08:41 - thoughtful, well written (again) and with a tone that is respectful and informative. I certainly can’t speak for JoeW, but your letter seems to have taken his earlier suggestions to heart.
After waking this morning and reading the updated posts above from you, TomDVM (I have to make that guy my family doctor!) and JoeW, I felt obliged to write another letter to my Congressman, Peter King. The folks in his CD absolutely love the man for his personal kindnesses and the constant hard work for his constituents. I included in my letter a link to this specific thread hopeful that at least his staff will review the subject and provide a favorable report back to the Congressman.
I’ve got my fingers crossed Monotreme!
I don’t think this is a D or R issue, but I have made some inquiries and will email Monotreme.
mmmelody47 – at 09:21
Good going!
I wonder whether the whole fluwiki is a D-issue. You and revere founded it in ? (last year I think). why ?
mmmelody47, thanks and kudos to you for getting involved. I’ve got my fingers crossed as well.
DemFromCT – at 09:25 True. You and the other moderators have been successful in your pursuit for an unbiased – non partisan wiki. Other sites have certainly been less successful. JoeW’s suggestions for contacting a particular Party or Caucus has merit (IMHO) based on his apparent overall intent. Could it be possible that Dr. Gerberding has made the issue of gene sequences and their subsequent timely release political….thus calling for a political remedy?
DemFromCT – at 09:27 and Monotreme – at 09:33 - thank you and your welcome!
gs – at 09:29
see comment above.
mmmelody47 – at 09:45
the politics are simple. Republicans are in the majority, and congress critters listen to ther constituents. so, if you live in a R district, write your R congress critter. If you live in a D district, write your D congress critter. If you live in Hastert’s district, ABSOLUTELY write him. ;-)
OTOH because he’s a doc, and because he’s made this ‘his’ issue, and especially because he’s running for Prez in 2008, everyone can and should write Bill Frist.
DRAFT REVISION FOR COMMENT ONLY
Dear Dr. Gerberding, There is serious concern about the discretionary behavior of the people at CDC. Apparently, the sequences for the current influenza are not being deposited in the GenBank. Why are these sequences not available for our leading scientists when it is within your discretion to make this information available as has NIH and The Navy? Your lack of attention to this important matter threatens the lives and well being of the people in this country. Specifically, it is expected that more than two million people could die without access to information that could lead to a resolution of a potential pandemic.
Many of the measures that we would use to reduce the impact of such a pandemic require the sharing of sequences obtained from flu viruses amongst the country’s top scientists. Examples of activities that require these sequences include surveillance and vaccine development. Yet, the scientists of the United States and other countries are unable to examine influenza sequences acquired by the CDC. Your decision has seriously impaired their work. Drs. X, Y, Z indicated that they need this information to assist in the construction of a vaccine that could very well save lives.
It has been estimated that a pandemic may kill up to 2 million Americans, mostly young people and children. Many of the measures that we would use to reduce the impact of such a tragic event require the sharing of sequences obtained from flu viruses amongst top level scientists. Examples of activities that require these sequences include surveillance and vaccine development. Yet, most of the scientists of the United States are unable to examine influenza sequences acquired by the CDC, which has impaired their work.
The National Institutes of Health (NIH), in particular, the National Institute of Alergy and Infectious Diseases (NIAID) deposits all of the influenza sequences they obtain in GenBank very quickly. The United States Naval Medical Research Units have deposited H5N1 sequences that they acquired in GenBank. CDC has published the sequence of the 1918. Large numbers of nucleotide sequences can easily be deposited in GenBank through batch processing, so time and effort are not issues.
There are concerns that these sequences are being kept secret so that individuals at the CDC have exclusive access for their own studies which may not be published for years. Given the current state of affairs, this is completely unacceptable behavior in the scientific community when the lives of millions of Americans are at risk. Scientists at the CDC must deposit all of their flu sequences in the GenBank database and this information must be made accessible to all qualified scientists in the United States. The spread of dangerous viruses must be monitored and the most effective vaccines have to be developed. CDC scientists must deposit flu virus sequences with 24 hours of completion.
I hope to hear from you that you have addressed this urgent issue within the next week. Thank you for your attention to this important matter.
Sincerely, [your name here]
cc Secretary Leavitt, President Bush Copies of this letter have been forwarded to: John Heilprin, AP (he just wrote an article on pigeons) Scott Lindlaw, AP (he just wrote an article on chicken farms)
If you have sent this letter or a similar copy please email . . . Your name, title and position would be appreciated. If you prefer not to provide you specific name your title and the type of work you do would be appreciated. In the next few weeks we will compile and post a list of citizens, international scientists and others who have expressed their serious concerns to Dr. Gerberding. The internet address is http://Flu . .
Monotreme Your skin is thick - right? We are trying to collaboratively construct something here.
I left out the national security issues so as not to muddy the water. If the Navy is sending sequences then Ntional security should be off the table. None-the-less why raise flags that are not needed.
CC to Frist is a must and should be included in the letter.
I found the AP writers names on the recent news (they are real though I don’t have email addresses yet.
I think that the NY Times, Wash Post and similar should be included in the cc list
Personally, I take pride in being a political independent and one of the draws of FluWiki is its non-political stance, even if we do have to put up with some democratcs from the north east, nameless here forever more :-)
Another revision, “could kill two million Americans or more”
Can you give specific contact people at NIH and the Navy for her to consult with on this issue.
English still needs to be improved.
Can we provide a link to where people can email this letter.
Ask people to list the names of people they have ccd
JoeW, my skin is thick, don’t worry. The reason I mentioned national security is that this is one of the excuses that people at the CDC have used to explain why they haven’t released the sequences. I’m trying to pre-empt one of their expected responses. Of course, the release of the 1918 virus sequences (by the CDC) and the fact that the US Navy has deposited their H5N1 sequences completely undermines the credibility of this excuse, but nonetheless, if we don’t point this out in the original letter, they may be tempted to try the national security ploy once again.
On second though. We don’t need national security issues but the references should be to international scientists (jingoism is not needed).
I am placing my notes here for you and others to think about and revise as needed. Terms like GenBank need to de defined so the ignorant reader has immediate knowledge.
Probably need a term like “genetic neulcleotide sequencing of the virus’ structure” is needed to identifiy a treatment for influenza. I am struggeling with the development of a concept by a virologist that would be easily understood by a layperson. Revere is good at this so their types of descriptions would be useful.
We need someone who is media savy. Who are the best contacts for credibility? Who are the best and potentially interested investigative journalists?
Can we get through to any pressure, power groups, Who are Frist’s buddies. How to stir the pot?
take it to the political sites (when it’s done) for the answers to those questions.
Just sent the letters - you’re right it was easy - took no longer than 10 minutes. This should be picked up by 60 Minutes! Could somebody with more knowledge than I, figure out how to pitch them? I googled “60 Minutes” and the first selection, cbsnews.com, takes you to their page and there is a way to contact them.
If no one else wants to do this, then I will contact them, but I am largely ignorant about what the issues are (with the exception of what I’ve read on this thread) and would not be the best person to try and get them interested in this world affecting scandal.
Good for you Felicia.
NBC is doing a weekend devoted to this. Contact Ann Curry at Dateline.
dateline@nbc.com
DemFromCT, are you asking me to contact Ann Curry? - or should we all? Is she up to date on the issues and are they running an expose on Dr. Gerberding and the CDC? Does that mean that we shouldn’t pursue the 60 Minutes thing - the thinking being that they wouldn’t want to pick up a story that was already being covered by Nightline?
Everyone/anyone can write. I think they all should be contacted. Curry wrote a good story that i linked to, and would be a good contact..
DemFromCT: Will Dr. Gerberding be on the Dateline special? It would be nice to have a reporter ask her point-blank, why is she hiding the sequences? And be prepared to knock down the “national security” and “it’s too hard” excuses. Even better would be if there were a vaccine development scientist on who would point out how important having the sequences were to their work.
Monotreme, I am going to work on your letter and a strategy later tonight. Right now I am fixing a roof and just check in periodically (at break time). There does not seem to be a lot of activity on this issue and I wonder if others are not inclined to stir the pot or not inclined to have their identity revealed? Any thoughts on the matter?
JoeW: Don’t judge what’s happening by the posts here. You’re just seeing the tip of the iceberg. I have spoken to some PTB about various flu problems. Others are also working on this offline.
My letter is just a template. People can take it as is or modify it as you have done. No reason everyone has to send in exactly the same letter. As for revealing names, a number of prominent scientists have already called for the release of CDC sequences, publicly. No effect so far. Let’s hope alot of Fluwikians are quitely sending letters and emails to their representatives and media people.
I’m not completely computer literate, but like most I can get around on the Internet pretty well. Monotreme, JoeW, Tom DVM, Felicia and other contributors….perhaps the final draft of the letter that is discussed above needs to be presented from the bottom up as opposed to the top down. Instead of going to Secy. Leavitt and President Bush….reach out to the bloggers, authors of objective on-line articles regarding H5N1, The Drudge Report and so on. Keep putting the letter literally any place that has readership. It has to have an impact at some point. Perhaps a two pronged approach: political – bloggesphere at the same time.
JoeW…I bow to your expertise in this matter.
The brilliant minds that discuss the variables of H5N1; the possibilities, the probabilities, theories, molecular structure(s), genetic makeup, etc., etc., are not unlike the guy driving a car with three wheels….an important part is missing to make the ride smooth and safe.
The CDC has the other wheel and we have to get it from them!
Let’s keep this bumped up. Everyone who reads this should take the time to send letters. It took only a few minutes. Is there a spokesperson in this group who could talk to someone at 60 minutes if I got them on the hook and interested in the story? I don’t feel qualified, but I understand that many of the contributors here need to stay anonymous. If there is no one who will speak with a reporter (DemFromCT, Melanie?), then could someone at least point me to a bunch of resources so that I can get up to speed quickly and be able to speak intelligently on the issue? I’m in sales, so I’m very convincing and I am also a good “cold caller” I’m confident I can get a foot in the door, I just don’t have a good enough grasp of the issues if I get someone who is willing to hear our pitch for a 60 minutes story.
Felicia – at 17:39 - Monotreme….maybe.
I’ve put it out in Left Blogistan before. The blog I lnked to is the largest political blog on the web and has upwards of a million eyeball pairs a day. I have less pull on the R side, but feel free to mention my name (I am somewhat known - use the link I provided, if you wish).
Felicia, that story I linked has resources (Branswell, especially), but email me and I’ll send you the Science and Nature editorials.
Felicia,
I am the mods public face and am happy to give interviews, do it all the time. If you can get me hooked up with a reporter, I’ll be happy to do it.
One of my former neighbors is the mother of a man who helped produce the News with Tom Brockaw. He is still with the new T.V. anchor. I don’t know his role in the gathering of the news. I recall he was a reporter way back when, and is an intelligent man with teenage children. We here are as concerned with the future generations as well as our own families. While I doubt it would be brought up on the nightly news, which is short and sweet, perhaps it could be handed around, and find a home with someone who could do something. I should ask his mother what his position is before I do this. And I am asking what Monotreme thinks. Just another drop in the bucket? Perhaps this is too far a reach, 3 to 4 degrees of separation.
Felicia,
I am trying to maintain my anonymity for a bit longer, but I do have an email address listed in the profiles. I’d be happy to respond to emails for background information. However, there are influenza scientists already on the record who support the release of H5N1 sequences. They are the ones who should be interviewed. They include, first and foremost, Ilaria Capua of Italy, who bravely refused to join the WHO secret database and made her H5N1 sequences public. In addition, Steven Salzberg director of the Center for Bioinformatics and Computational Biology at the University of Maryland, has specifically criticised the CDC for their sequence hoarding. He would be a very credible scientist to interview for any show on this problem. This article by Helen Branswell has more names.
Lily, the more people we contact the better. I’d like to see a tsunami of pressure applied to Dr. Gerberding from every possible source. So, be all means contact your former neighbor if you think he might be interested. I’ll be happy to provide any background information.
One point we should make it clear that it is the CDC that is hoarding data, not the NIH. The NIH program has released their flu sequences promptly. They had to set up their own flu sequencing program because the CDC wouldn’t share their data with them, if you can believe that.
More info can be found at this Opinion and at this thread.
Or perhaps this thread with its concerns should simply be mailed to every major T.V. News Anchor production manager, or whatever title they have. Someone, somewhere must have clout and be concerned enough to investigate it thoroughly, and make it an issue.
bumped
Monotreme It begins. Here are a few things that you could do.
1. List the significant issues here, point by point from beginning to end. These become talking points for non-scientists and anyone who has influence.
2. Lets Get Melannie, Felicia and Lily working together. There is not a need for not “one” but many faces on this issue.
3. Can you list in order of priority which scientists to contact, where they are located and why they are a good contact. Can others please contribute to this list?
4. Melanine has her work and Felicia is good at sales, how about if Felicia becomes the public coordinator for this. If she will list her email here all necessary info can get passed to her. Others willing to help should email her at her address and she can correspond with Mono for priorities.
4. Can others list other potential contacts as suggested in prior posts.
5. Can we find a “deep throat” who can act as a resource when we find an investigative journalist.
6. Can any other people think of (or have) contacts such as Lily mentioned.
7. Felicia can then use this thread to tell us what she needs as it moves along.
Lets keep this bumped.
bump
JoeW, thanks for keeping this going.
I’m working on an opinion here regarding the CDC sequences. It’s not done, but you’ll get alot of background info there.
Scientists to contact -
Each of these scientists have criticised the hoarding of sequence data at the CDC.
I can provide background information. But for a “deep throat”, you need someone on the inside at the CDC. Finding someone like this might be difficult. Dr. Gerberding is known for her vindictiveness. The witch hunt will begin the second she suspects someone on the “inside” is about to spill the beans.
Good luck Felicia
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I am waiting until the weekend to call my former neighbor in California. Like me she is a gadabout, up at dawn and out. I was thinking about this and I think the wife of her son used to work at 60 minutes. She left because one of the children was having health issues. Lately she was traveling to the Mayo Clinic, so their lives are topsy turvey. My neighbor often goes to pitch in and help. Now I have had lunch with the daughter in law who is a very competant and dynamic woman. I’ll talk things over with my neighbor. I don’t know if I should call the daughter in law. She well might have some good ideas, but as I said they have issues of family to consider.( I also have some time on my cell phone on weekends) otherwise its .45 a minute. I might be having some long chats about this.
see this thread - correction. niman poosted that a Chines researcher and a French researcher had posted to GenBank prior to publication - can’t find the thread.
Does this mean they are breaking ranks, doing what is best for humanity, possibly risking their careers?Has the ball started to unwind?
Hope so:
http://www.fluwikie2.com/pmwiki.php?n=Forum.NewH5N1Sequences
Hong Kong (Yi Guan and Malik Peiris) have deposited new H5N1 sequences at GenBank (from Vietnam and Indonesia) prior to publication.
I have removed Malik Peiris from the list of scientists blocking H5N1 sequences in this Opinion.
However, Dr. Gergerding continues to block the release of the CDC flu sequences.
We just need one lab assistant who understands how important the information is to the world, someone who is understandably dismayed about the secrecy of these data points.
Volunteers? We understand that you may be reading this and you may want to help.
Shall we establish a blind call or email somewhere to receive your information?
Great idea NS1. Hey guys, think of what heroes you’d be in the books written about this some day. Help the world out!
I should add that I know for now it would be best to keep it under the table if anyone takes NS1′s advice. But when those at the top blow away like tumbleweeds when this explodes, then when the dust settles, we can carry you around on our shoulders.
Monotreme - If you’ll click on this link http://www.fluwikie2.com/pmwiki.php?n=Forum.FluwikiansInTheNews , supplied by Ricewiki you’ll find the March 2006 article featuring Dr. Niman in The Wall Street Journal, by Nicholas Zameska.
My reason for including the above information is not so much to direct you to something you may have already seen, as much as to ask why not forward your letter regarding Dr. Gerberding to Mr. Zamiska for his review, investigation and possible follow-up?
Thoughts?
mmmelody47: I suspect Mr. Zamiska contacted Dr. Niman and not the other way around. There are a number of jouralists who lurk at FluWiki. I’m sure they are aware of my letter and are aware of the CDC policy of witholding the sequences. This has been reported on numerous times. Several scientists, listed above, have publicly spoken out about this to national and international media. This has had absolutely no discernible effect on Dr. Gerberding that I can see. So, my forwarding my letter to Mr. Zamiska may not result in a new story. To make significant progress, the media and the politicians need to know that you all, the public, are mad about this and that you want action. Unless there is a feeling of outrage amongst a significant number of the public, I don’t think we will see much of a change in policy.
If you want to know what the effect of Dr. Gerberding’s past policy has been, I recommend that you read this. This was the year that there was a mismatch between the vaccine and the flu strain. This was directly due to Dr. Gerberding’s policy of hiding data.
Monotreme - Some weeks ago when I suggested to you a more “in your face” title for this thread - - I included the word OUTRAGE, as I recall. Gerberding’s behavior is clearly an OUTRAGE and more.
Someone with the necessary intestinal fortitude has to step up to the plate before it’s too late.
Thank you for your reply and linked information.
‘treme,
Yes, there are a number of journalists who lurk here. And you win the Wiki Persistence Award for staying glued to this topic.
mmmelody47: A number of scientists with intestinal fortitude have stepped up to the plate, notably Ilaria Capua of Italy, who has put her career on the line to protest against the secret WHO database. Some journalists like Declan Butler and Helen Branswell have also stepped up to the plate. But print journalists just don’t have the impact on public opinion that broadcast journalists do, alas. We need someone like Lou Dobbs to hammer this home every night. We need a reporter who will ask Dr. Gerberding, to her face, how she sleeps at night knowing that thousands of people have already likely died because of her policies and that millions more, mostly children and young people, may die because of her policies. We need a congressional investigation. We need Secretary Leavitt and President Bush to think carefully about who they have in charge of the CDC.
Melanie, I will never stop until the CDC releases its flu sequences, period. My interest in this, and the CDC’s penchant for secrecy, predates the FluWiki. This is personal.
Monotreme – at 22:27 - my intestinal fortitude comment should have referenced NS1 – at 02:02 request for a lab assistant to fundamentally “do the right thing.” I’ve read your previous posts regarding Dr. Ilaria Capua (beautiful name!), Helen Branswell, etc. and certainly admire their respective efforts.
mmmelody47, yes, having an insider at the CDC who would condemn the witholding of sequence information would a major contribution to humanity.
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Monotreme, for the lurking journalists, could you give a brief overview of how and why sequences are used. Why they are necessary and an estimate of how many CDC is hording? What would it mean (in specific terms) if they were released? What have we learned to date from the sequences?
Anyone can send out these threads and references to their favorite news in depth. The evening news might not be the best place for anything like this. I did need to check with the mans mother, as I am not sure he still works there and exactly what his position is. Unfortunaly I have a devil of a time with any phone, land lines or cell. They conk out on me. 6 land lines. This cell phone simply would not allow the call to Ca. to go through. It was call failed, not matter where I tried to use it. Then it vanished, to reappear today. I’ll charge it up and see if I can send on the information and be certain that someone would see it, and it wouldn’t get deep sixed.
JoeW, I’ve written an Opinion piece about this here. It lays out why witholding the sequence data is bad.
But here are the bullet points-
We don’t know how many flu sequences the CDC has in their secret database, but the estimate is a very large number.
The recent release of a large number of flu sequences by Robert Webster and a large scale flu sequencing project by the NIH surprised everyone as this large body of new data showed that flu viruses exchange genetic material much more frequently than people had thought. This makes it more likely that H5N1 will acquire a human adapted hemagluttin gene, which is necessary for a pandemic to begin, IMO.
Having access to all the flu sequences will allow many more scientists to apply their knowledge and tools to help pick the right strain for flu vaccines. Even with the ordinary flu, this is important. This year we are having a relatively mild flu season. This is attributed, at least in part, to a good match between the vaccine and the flu strain circulating in the human population. In 2003–2004, there was a bad match. As a result many more people got sick and died than this year. When NIH scientists got sequence data that the CDC had been hiding, they immediately realized what the correct strain should have been for the vaccine. But it was too late. 93 children died that year. This year less than 24 have died. So, one could reasonably estimate that 50 children died unnecessarily in 2003–2004 because Dr. Gerberding refused to let other scientists see the flu sequences the CDC was hoarding. The stakes for the H5N1 sequences are potentially even higher.
References
Flu researchers slam US agency for hoarding data
Well-matched vaccine credited for fewer cases, deaths this winter
In addition to applying public pressure as outlined above, is it possible that legal action might be appropriate? Have we established whether or not this information is subject to a public information request? Even if that does not appear to be a viable option, there may be the option of filing a consumer protection type suit to force release of this information.
There are surely competent attorneys who would take an interest in this subject; and high-profile litigation of this type would make great fodder for the news. Some attorneys relish these high profile cases where there is a lot of media attention. Perhaps they could even be persuaded to take it on pro-bono.
Just another avenue that might be worth pursuing.
petperson, I have been wondering about the legal angle myself. The CDC is funded by the US taxpayers. So is the NIH. The NIH releases their flu sequences, the CDC keeps theirs secret. Further, the samples come from patients. Do they know that the samples they provide are being used to boost the careers of CDC scientists, not to help their fellow man? I also wonder what the legality of hiding sequences is when this endangers the lives of many people at risk. If you knowingly engage in behaviour that put’s people at risk, are you legally responsible if they die? Is it manslaughter? Also, I wonder if the people who got sick in 2003/2004 because the vaccine they got was poor match, which could have been prevented if the CDC sequences had been made their sequences available to other scientists in time, could sue Dr. Gerberding?
Any lawyers out there with an opinion? Calling De Jure.
Monotreme, I fully agree with you. I also support checking out the legal aspects of this.
There must be several areas of law that this could pertain to; some that come to mind immediately are malpractice, restraint of trade, liability - and I’m sure there are others. A class-action suit might be appropriate. Good attorneys are creative in framing their pleadings. There may even be vaccine-related litigation ongoing at this time which would be relevant.
It seems to me in the first place that this information should be subject to request for public information, since it is funded by taxpayers.
If the records were subpoenaed, Dr. Gerberding would have to cough up the information or explain these inactions to a Judge. That would be an interesting transcript.
Monotreme: Any person can make a request under the Freedom of Information Act. Below is a link to the HHS pertinent information. Subsection F lists some of the exclusions that the CDC can use, and we have heard a few mentioned before by various CDC spokespeople (national security, commercial interests, and even inability to handle requests). Once you get to the site, you can go back a few pages and see the “how to make a request.” I would suspect the CDC arguments can be overcome with the help of a good lawyer because NIH does release sequences and would presumably have to contend with similar issues raised by the CDC.
In the meantime, I’ll search for a public interest law firm that may be interested.
Forgot to add the link:
To make things easy, here’s a link to the “how to request info page.”
Thanks Nightowl. Yes, the CDC has already thought of a FOI request, but, as you point out, very unlikely it would hold up in court. Thanks very much for looking for a public interest law firm. Given the stakes, this could be one of the biggest public interest cases in US history.
Yes Monotreme, I would agree. I suspect the FOA is the starting point. Then if the CDC formally refuses, things escalate.
Nightowl, I have no doubt Gerberding will fight the release of the sequences tooth and nail. But, once legal proceedings start, perhaps the legal eagles in HHS will realize they don’t have a case, or a compelling reason to boost Gerberding’s career at the expense of Secretary Leavitt’s reputation, and compel her (Gerberding) to release the sequences. My fantasy, anyways.
btw, it was Nancy Cox who was mouthing the anti-FOA excuses. Sad, very sad.
It really is sad. I am speculating, but I feel a formal request requiring a response may gain more attention from media. Of course, the CDC would use every tactic, including delay, to block a release. Our last ditch effort may be to set up a demonstration in Atlanta!!!
The Public Health Advocacy Institute may be a resource. The only caveat is that they have done a joint conference with CDC. However, that means they have contacts, too. We need pro bono attorneys.
Regardless of whether an FOA request works or even a lawsuit, any tactic that brings this to the attention of the public via the media is helpful. Much like your tireless work on this issue and the work of other contributors on this public thread.
Monotreme - BTW, PHAI above provides a link to Effect Measure on their weblog. Also, note their secrecy project.
Re pro bono legal assistance; most Bar Associations (at least I know the Florida Bar Association) encourage and possibly require attorneys to do a certain amount of pro bono work. Look for an attorney or a firm that you feel would be competent to handle the case, and then don’t be shy about asking!
Maybe some other organization, or even a nonprofit entity, has the same interest in obtaining this information and will join us in our quest. In that event, grants might be available to assist with legal expenses.
Also occasionally you have an attorney who aspires to public office, and welcomes the media attention focused on a case of particular interest.
You may need to deal with an attorney who is licensed to practice in the jurisdiction where the CDC is located.
I would be sure to issue a press release when the FOI request is submitted.
As a matter of fact, in thinking about who would fund legal expenses, one thinks about who has a lot to lose should BF go pandemic. The insurance industry has a Lot to lose; they might assist with cost of proceedings aimed at preventing such an event. Similarly, other groups that would be hard hit by pandemic could become allies in the quest for information. There are lots of possibilities.
Good info petperson. Also, here’s a link to the Nationl Security Archive’s FOIA section on how to do a request, complete with samples. They also have a public interest law firm wing. Since I think the CDC has cited national security, this resource that specializes in the FOIA may be one of the best.
What we need is an organization to front this request so fluwikians, especially Monotreme, can continue to be anonymous. And, of course, the request would have to be disassociated from fluwiki.
Outrage is the right word here, especially when I think of the children and others who died because of the vaccine fiasco a few years ago. Thank you, Monotreme et al., for trying to prevent this from happening again.
Another FOIA resource with a litigation wing. BTW, the burden of proof rests with the government not with the citizen or citizens making the request. Monotreme, if the FOIA route is pursued, the letter above could be revised to state that a request under the FOIA has been made, and we are asking for support to this end. Also, as petperson suggested, a press release.
Here’s the CDC FOIA info:
Excellent posts above. FOIA = Press release = News conference = Public pressure = Release of sequences….we hope.
It seems that this thread is starting to pick up some steam….posting the link to this discussion on other threads within the FW may be helpful to get other readers involved.
Persistence will win, Monotreme.
Lot’s of great ideas here. Thanks all for participating.
It seems like we are starting to build a multipronged strategy to release the CDC sequences. Nightowl, I followed you link to the Public Health Advocacy Institute and found another link to Defending Science. I will try to look more carefully at this link and others. Perhaps Revere will be able to help. Also, I agree the Insurance industry and most in business community have a strong interest in getting the CDC sequences released. They will lose massive amounts of money in a pandemic.
I believe any private citizen can make a FOI request. But if the consensus were that an organization should be formed for the purpose of pursuing this, it is relatively easy to set up a nonprofit organization at the state level - I have done it in Fl, where it requires a board of directors consisting of 3 people, a minimum amount of paperwork, and a small filing fee.
That nonprofit status does not confer tax exemption, nor tax deductibility for donors. A 501c3 from the IRS would be needed for exemption/deductibility - and that is a more cumbersome application process, although it is certainly doable.
Documentation of nonprofit status is available to the public; the names of directors of the organization are readily accessible. So if a nonprofit were formed at the state level, you would need 3 directors who are willing to have their names made public. Each state may have a little different procedure for establishment of a nonprofit organization, but I believe they are all fairly similar.
So, who wants to take the lead on forming an organization to pursue this? I’m not a lawyer, so I don’t what would be the best way to proceed. Perhaps we could create a FluWiki legal working group. People who volunteered for this group would work on legal issues like FOI requests. Not everyone in this group would have to be lawyers. It could include community activists and lay people with an interest in getting sequences released to the public. It should include a subset of people who would be willing to use their own names for filing purposes. Once an action was agreed upon, this group would need to work offline and not use the FluWiki name when making FOI requests or other legal actions.
Volunteers?
I will volunteer to work with the group - although I would prefer not to head it up. I have some experience setting up a nonprofit corporation in Fl.
One thought is to contact progressive blogs and websites to mention the issue, or write a guest column for them to run. These are read by main stream media who may pick up the story.
For example, I just today recommended to Huffington Post and Common Dreams to have a link to Effect Measure on their sites as a progressive public health blog, and listed some of the recent issues they have covered, including witholding of gene sequences.
Political processes are usually responsive only to political pressure, and both light and numbers can be a source of pressure.
Writing a FOIA request is really straightforward. It is basically a one-pager. The easiest route to take, IMHO, is to interest one of the above linked organizations to file it on behalf of the public. The ACLU also may be interested in the request.
We would need to provide enough background information for these organizations to understand the issue and pick up the case. In effect, our job is to educate the attorneys in the organization. I feel certain that if we are professional and coherent, the issue speaks for itself. Monotreme has already done most of the work. Instead of focusing on the FOIA request letter (the easy part), our task would be to review Monotreme’s pages of information and various links to sources, making sure everything is impeccably referenced and all in one place. (Again, most of this is done.)
Then an email (briefly outlining the issue with a draft FOIA request attached and a link to the information on Fluwikie for background info) is sent to the organizations.
To recap, our job is to make it easy for public interest organizations and their attorneys to understand what we know. The sequences at CDC should be as accessible as the sequences at GenBank for scientists the world over. Monotreme has provided a wealth of information on this topic along with others here at Fluwikie. We need to look at the information with an eye toward organization so an attorney who knows nothing about bird flu, let alone sequence databases, can get up to speed quickly. JMHO and only brainstorming here.
The following link shows how easy a FOIA request is to write. Scroll past halfway for a template and sample. The hard part is looking at this issue with the eyes of someone who needs to get up to speed. Do we have everything in one easy to use place that would convince others that our cause is just? I believe we do with a bit of tweaking.
Link to sample FOIA request:
Nightowl, why don’t you take a crack at organizing the information in a way that a lawyer with no previous experience with this issue could understand, if that’s OK with you. The rest of us can fact check it. If there’s any info that you need to make the case, let us know and we’ll try to find it for you. You can post here, for now. I’ll create a FOI page and post the final version there. Then you’ll have a URL you can point the relevant people to.
Summary of proposed strategies to release CDC sequences
Futher suggestions
Regarding a lawyer, I think a firm would be better than a solo practitioner to do pro bono work. My husband is an attorney and he has filled me in on some of the tricks of the trade in foot dragging, like bringing in a room full of paperwork to so snow under the opposition that they throw up their hands in defeat. They could drag it out long enough for two pandemics. Long enough for it to become a mute point so I would think the firm should be informed that bringing in the media so the issue could be judged by the court of public opinion would be the best way to open pandora’s, I mean pandemic’s box of goodies. I could ask my husband to look over a brief when it is done. He isn’t in the right area of law but I think that is what you are suggesting, Monotreme.
I’ll give it a go, Monotreme. I’m glad you posted a summary and suggestions for the many activites going on here. Lily, Felicia, JoeW - how are things going? Ceredwin, you’ve got a bunch of other good ideas to pursue, too. Mmmelody47, thanks for your comments.
JoeW, I’ve taken to heart your ideas regarding talking points and summarizing. Feel free to jump in. (I’m wearing my thick skin.) Anyone else as well (NS1?). Tonight, I’m taking a look at Monotreme’s opinion piece. I want to look at it in light of your suggestions above and the letters. Many of your comments, JoeW, apply to attorneys looking at info for the first time. Monotreme writes beautifully. I believe the opinion piece is the starting place. I only want to edit a bit to be sure the bases are covered. For example, as you mentioned, defining terms. The opinion piece has just about everything we need.
Petperson, you sure started something here when you suggested looking at the legal side and a public information request. The letter prong of Monotreme’s “multiprong approach” is well underway. Perhaps we can get this prong going as well. The link to the opinion piece is at Monotreme 22:39. Do you think it will work as background info to send to a public interest organization along with a draft FOIA request? Other thoughts?
Monotreme - I’m going to copy your opinion piece into Word, then make comments within brackets with my initial added, then paste back onto this thread. For example, by the Atlanta article reference, [Is this subscription? Do we need permission to post a quote?-N] I believe your opinion piece captures the heart and soul of the issue. I think it should be the base and then perhaps a section added here or there when you want to expand on info for someone who may be considering all of this for the first time.
Hi Allquiet, you’re right about the paper deluge, and your points are well taken. Let’s hope a public interest organization with a litigation wing will file a Freedom of Information Act (FOIA) request on the public’s behalf.
A sample of expanding the opinion piece for the intended audience; that is, public interest advocates.
“Having up-to-date sequence information on different strains of flu virus is essential for producing effective vaccines. Many scientists in the United States and other countries who are experts at analyzing these sequences [deposit and retrieve this information from open-access databases such as GenBank, maintained by ?. For example, ---put in Webster deposit info ---- .N] [Prior to ?, the Center for Disease Control’s database of flu sequences also was open access. N] [ Monotreme, is this true? What is the history prior to Gerberding? Would be good to show how policy has changed since Gerberding’s appointment if it has. N] However, [now N] all but a few are not allowed to see them.”
Thanks to everyone participating in this thread. I think things are moving in the right direction. I agee with Allquietonthewesternfront and Nightowl that we need to involve an organization that can make their case through the media to keep the issue alive while the CDC tries to stonewall.
Nightowl, I will add more details to my Opinion piece as you suggest. Unfortunately, I think the CDC policy of keeping flu data secret may predate Dr. Gerberding. She clearly endorses it, but I think she must be supported in this by the flu scientists at the CDC who were there before Gerberding. If I were to pick one person who is responible for the policy of secrecy from this group, it’s probably Nancy Cox, sadly. She is the leader of the Influenza branch. She is also on record as saying it’s too time consuming to release the CDC sequences, a transparent lie. She has also said that she supports Ilaria Capua’s release of her sequences, making Nancy Cox both a liar and a hypocrite. And of course we can also add the fact that she has supported a policy that has likely resulted in the deaths of thousands of Americans, including children. I think the other members of the CDC Influenza group, both current and past, are morally culpable for the consequences of this policy, especially since none condemn it.
Is it possible to list everyone at CDC, their name, telephone number, and email address who is or may be involved in this? Are there other people at CDC who could be contacted. The more work that is done for an investigative journalist the easier it is for them to do their thing. When we get this all together, Intro, Names, places and players I think it should go to the law firm(s) who might be interested and to the city desk editor as well as the journalists. A little pressure / help here might free up some time for someone. The letter/ proposal should be signed by as many people as possible. Lets call it a by some catching name, but not one that would offend. When it is all put together there is a need for a cover letter with a request for signature support by scientists from all over the world. I would think that the document can be emailed with the cover letter (which later becomes an appendix. The names of all those willing to sign on would be on the executive summary (or first page). If that type of approach doesn’t snag someones interest I don’t know what will. then we cc everyone who might be able to help and or have an interest. 1. Executive summary 2. Problem statement 3. Solution proposed - - a. What others have done (NIH, etc) 4. People involved (contact info) 5. People who have been notified 6. Signatures to this document with addresses 7. Letters of support?
8 Appendix Letter requesting support to international scientists.
cc: - - -
Monotreme - My experience with the law was writing speeding tickets, arresting criminals and protecting life and property. It’s safe to say that we’ll all be trying to “protect life” in our future endeavors. I will extract information from your earlier letters, Monotreme, that of JoeW’s edited version and subsequent postings above. I’ll write to the editors of NY Newsday, NY Post and The NY Daily News. All have significant circulations….thinking out loud, also The NY Sun, and I’m sure a search will reveal many other daily’s in NY.
Would you or another person like to review any proposed letters sent to newspapers for accuracy of content prior to mailing?
mmmelody47: It would be best for Montreme to review all letters by those of us who are less knowing than him/ her. Seems that there are a lot of us from criminal justice floating around here. Or maybe we are just not as shy as others about who we are and what we do / did.
After seeing his picture in an earlier post it seems deferring to a platapus (or whatever he/ she is) is a bit of a step down for anybody. I treat my dogs a well as I treat people but a monotreme ?? :-)
It would seem to me that the ACLU sould be all over this, anyone know why not?
Thanks Melanie. They are cute but “While not strong enough to be fatal to humans, platypus venom can inflict serious pain in the incautious and has been known to cause fatality in dogs. Effects may include hyperventilation, hypoxia, and convulsions.”
OK CDC is in for a difficult time.
Melanie and JoeW, LOL. JoeW you’re right, we Monotremes are also very persistent.
mmmelody47, I’d be happy to review your letter. I think others here will also be able to provide helpful feedback.
btw, I’m still adding more info to my Opinion based on the feedback I’ve gotten here.
JoeW - at 11:10 - “Or maybe we are just not as shy as others about who we are and what we do / did.”
Virologist, biologist, MD, DVM, bloggers, police officer or Professor of Criminal Justice - we’re all in this together. Everyone has an expertise at something….mine doesn’t happen to be in Monotreme’s, TomDVM, NS1, Eccles, Niman and DemFromCt’s area. My wish is to help, or at least try to help. As to shyness….they will reveal themselves, as you know, when timing allows.
I think I’ve read all of your comments on the FW, Joe - so I think our ideas, ideals and desires are the same. I’m proud to be an American and extremely proud of how I conducted myself in my former career….no shyness there!
add the Saltzberg letter to Opinion.
Nature 440, 605 (30 March 2006) | doi:10.1038/440605a
I have also posted the issue (again) to L Blogistan today.
mmmelody47, though we don’t share political views, I’ve notified R Blogistan as well. ;-)
Yeah most people miss it, too busy watching TV. Cops wear the American Flag like a chip on their shoulder and place their motto on the cruiser door, “To serve and protect.” - - Social worker with a gun.
Just occurred to me, what if scientists who got access to the sequences signed (or were willing to sign) a non-disclosure agreement. Propriatary data and all that. If nothing else the offer might start the ball rolling for negotiations. This probably wouldn’t work but some variation might. Just trying to think outside the box (what a stupid term).
I can write a press release and would if needed to support the cause.
DemFromCT – at 12:05 - True. As I have clearly stated before….you folks do a terrific job of keeping partisanship out of the mix and are quick to jump on those that don’t….whether D or R. That protocol is to be admired and respected.
Now that we’ve gotten past the Bovine Scatology (sp?)…let’s roll up our sleeves and get this job done!
mmmelody47 – at 12:28
Thank you. I bring it up to note that just because it doesn’t get highlighted here by design, we can do things in other places. The political blogs are very passionate and have a wider reach. The one I posted to today has (on a good day) a million visitors. If anyone has more reach and influence in R Blogistan than i do, feel free to send a few URLs along.
Given the reasonableness of Monotreme’s “Opinion,” and the unreasonableness of CDC’s position, I wonder if there might be something else going on here (aside from Monotreme’s conjectures re publication). Is it possible that when CDC cites national Security issues that they are in possession of information that could lead to overt panic? Perhaps what they know could lead to economic collapse for some countries? These arguments tend to fall away when it is considered that their policy is long standing. The length of time that they have engaged in this behavior tends to support Monotreme’s position that it is about publication issues and not about national security.
I would suggest that this aspect of the issue be worked into Monotreme’s argument. I hesitate to edit the opinion given my current, glaring, state of ignorance.
DemFromCT – at 12:35 - your welcome - will visit that site later today. I’ve been assigned the duty of cooking spaghetti and meat balls.
I actually do a pretty good job for an Irish guy.
JoeW, the CDC is witholding H3N2 sequences as well as H5N1 sequences. As you know, H3N2 viruses cause the flu we get every year. The NIH has recently deposited thousands of these sequences recently. No national security issue there. It’s hard to believe that scientists and physicians at the CDC would let thousands of Americans die and ignore children on respriators in order to puff up their CVs, but that’s what’s happening. Makes me physically ill.
The more I read this thread…I’m not feeling at all well either.
Lauralou. Nothing to worry about…Sherlock and Watson are on the case. The opposition is reading flu wiki. My suggestion to them…give up and present the data ethically…if not, it’s going to get a lot worse before it gets better.
Tom DVM, you’re exactly right, as usual.
April 30, Nightowl. Lily here. I’v been trying my best to contact my friend, but my cell phone seems to have other ideas. I got through only once to a male voice, wasn’t sure it was my friends house, so didn’t leave a message. Even contacting mutual friends to see what is going on (she knows everything) gets a we are not here message. I am reading this all following this as closely as possible, printing it up, I run into all kinds of people, never know, so am keeping this in my car. I can’t see why the American Civil Liberty people wouldn’t get involved, though many seem to tie it in with the decline and fall of the U.S. of A. Bizarre as it is, I think its simply this thread, that will do the trick. It will all unravel on its own before it gets broadcasted on National News. At least that is what I feel will happen. It needs momentum. This is my second cell phone, and it is the pits, am considering getting a better one with more range. Though I am due to go out of town for a few days, will stop by a meeting tomorrow with a very politically active aquaintance, see what she has to say,ask for her opinion. One of the Chataugua Lecture circuit mavens.I don’t want to do anything which might prove counter productive.
Dem at 12:03, It’s very powerful seeing in print what people in the field have to say about the withholding of sequences.
Dem, Monotreme et al., what do you think about starting a thread or page with as many quotes/articles as possible (all properly referenced as Dem did) on this issue? Perhaps beginning with Ilaria Capua. This would gather up the info into one place. I think it would have an impact for readers to know that this issue is gathering steam in the scientific community.
Monotreme, I read your expansion on the opinion piece - Good going.
JoeW, I think the ACLU hasn’t picked up this issue because they lack information. Everyone is getting a blip here or a blip there on the radar screen, but not enough to grasp the big picture. If we can pull everything together, they may be interested.
Monotreme included a link to the Atlanta Journal-Constitution article in his opinion piece. It is well worth the read in both information and tone. Notice no individual was attacked; the info stayed focused on the agency with quotes. One reason, of course, is libel law, which we would ignore at our peril.
I am inclined to focus more on putting pressure on “those scientists within the CDC who are withholding sequence data” and less on ripping the individual players by name because we may tread on someone wrongly. Also note that many scientists outside the CDC are reluctant to go on the record because they are dependent on the agency for funding.
I also am struck by the fact that this issue may even predate Gerberding. Apparently, in the past, witholding data was “business as usual.” Nevermind the lives lost to seasonal influenza every year. A looming pandemic is changing all that, as Ilaria Capua and others are trying to point out to the scientific world with their courageous stands. I have also noticed that when these scientists go “on the record” they are doing it with class. They are not signaling out individual scientists, they are trying to effect a paradigm shift. I believe we should take our lead from them. Also note that the authors of the Nature article above call on “all other scientists that might be sitting on influenza-virus data.” I would think at this point that those who are culpable within the CDC are beginning to feel the pressure.
Further, I believe it would be easier to get scientists to sign your letter if they don’t feel they have to take down a colleague in the process. I think we can get the point across as the Nature article above does quite effectively by drawing attention to the fact that the CDC is not forthcoming with data in a timely matter regardless of the excuses. That being said, Gerberding is a public figure, as head of the agency, and thus, I believe, falls under a different category in libel law.
It is a difficult climate for scientists to work in right now. Lack of funding is a major problem as well as a general anti-science attitude and transparency issues that resonate beyond just the CDC. Advocates for public health know this. Let’s stay focused on getting the facts out. JMHO.
I know I have that libel issue also in mind. I hope the lawyers amongst this readership are looking and cautioning when need be.
Nightowl, thanks and good idea about a thread of quotes.
As regards to naming names, I don’t want to get sued for libel, but my understanding is that the bar for that is pretty high. Also, they can’t sue you if what you say is true. Dr. Gerberding is the head of the CDC. The CDC is hiding it’s flu sequences. This did result a mismatch between the vaccine and the flu strain in 2003–2004. It is perfectly reasonable to suggest that people may have died as a result. I don’t think anyone could dispute these facts. Also, Nancy Cox is on record lying about the difficulty in releasing sequences.
Further, it’s hard to be sure, but naming names on the “Club of Worms” thread may have helped Dr. Malik Peiris to listen to his conscience and release his sequences prior to publication of his work. We’ll never know for sure, but the timing…
In any case, for the FOI request and any other legal action, I agree we should be careful in our wording. I defer to my legal colleagues for the best way to proceed there.
Lily, I’m with you on the power of this thread. BTW, I try never to miss your insightful posts. Your gentle spirit is always a reminder to me of what we want to live for, and why we want these scientists to have access to the sequences.
As I could not persuade my cell phone to behave itself, I checked the internet. The person I was thinking of is a Graphic Producer, and wouldn’t be a resource. Sorry.Bad , Bad cellphone, and to think I got it because I had two flat tires in one day.
I agree that this is not the time to name names if we are to get as many people on board as possible. I also doubt the wisdom of the term “hiding” sequences. Certainly they are being with held.
That said, I do think that pressure can be brought to bear on individuals through letters and contacts to the appropriate people and that actions that various people should be required to take. Thus to request “Levitt to direct Gerberding to release the sequences,” is not inappropriate. It specifies the problem the remedy and who should take action. Letters to people and organizations that support such a complaint should not constitute libel in my opinion. One is asking public officials to take the appropriate action.
It would be useful if we could find someone who used to work at or with CDC and then ask what they know about these sequences and the sequestering of data by policy and practice. Perhaps someone here knows someone via prior publications, work history or other CDC documentation from a few years ago? Who preceded Gerberding and what do they know?
Is there a secretary, clerk, lab assistant with knowledge?
I am not an American and have no experience in the area and therefore am silent…but what about Hiliary Clinton?
Bill Clinton.
I think Kenji Fukuda used to work at the CDC in the Flu section, so he probably knows how the policy on witholding the sequences was developed. He now works at the WHO, which has their own secret database. Not sure what his position is on witholding flu sequences from the scientific community, but it might not hurt to ask.
I agree with JoeW at 15:28. It is hard to imagine that the language he suggests could be construed as libelous.
Monotreme, I absolutely agree with you about Malik Peiris. Good work. I believe, as Lily pointed out, that this thread and the others that you started are exerting pressure. You are one of those courageous people out there trying to effect a paradigm shift, and I believe you are succeeding. You have my utmost respect.
I actually wasn’t thinking about the threads or their titles and have no criticism to offer, only praise. I also wasn’t thinking about what’s come before. My apologies that I wasn’t clear. I was thinking in the present, more along the lines of a letter with signatures and the implications of that and the FOIA request with supporting documentation, or a press release. Once, something leaves the freedom and collective give and take of a wiki and enters more traditional forms of mass media and the legal realm, there are different issues.
On the other hand, Lily’s comment on the power of the threads has got me thinking. Because there is such good information in these threads, and the pages you have created, I’m wondering if we should simply create a thread with the title “An Appeal to Public Interest Advocates and Journalists.” We could set up an introductory couple of paragraphs, and then by using subheads or brief intros (the key), we could link all of the “case on point” threads and pages. Using subheads would overcome the problem of organization. A thread as opposed to a one-page would be more visible. It would preserve the freedom of the posters and their opinions and anonymous status of everyone. It would continue to evolve and perhaps be an ongoing help to advocates. Plus, it would be easier to place a call or write an email with a “Have you seen this?” Public interest organizations and their attorneys know how to write FOIA requests and are usually media savvy; we don’t have to do it. They can write their own press releases and documentation using what they want to from the wiki.
My original thought was to somehow sort through the info and combine it into one document or page. But then you lose the passion and insight of the individual contributors to the collective insight. For example, the “Club of Worms” is Monotreme’s passion and outrage at the witholding of data. It was and will continue to be effective, and I for one believe he is right to share his outrage. I am outraged. However, I am wrestling with the dispassionate problem of how to organize this information so others can access it easily. I am thinking about how to create new pages with scientist quotes, etc. The passionate and dispassionate are both necessary here, I believe.
JoeW at 15:28, I also completely agree with you on all points.
Monotreme’s opinion piece is a good start. From there, any number of variations can be created. It is likely that different approaches will be needed with different audiences.
Dem, what do you think of the thread with links? Or should it be a URL to a page? Or are you saying back to the original idea. Helllp….!
Nightowl,
Use ‘treme’s idea and craft your own letter to your local media.
Nightowl – at 19:11
A thread with links is a good idea for us, but not for someone from the outside trying to get an idea of what’s going on.
A page like this, otoh, would be helpful. it could include those on record as having an opinion (Saltzman, Capua, et al) or those who have on record deposited data in GenBank ((Yi Guan, Malik Peiris, etc) as well as the editorials on the topic from Nature and Science.
Think of it as “supportive material” for Monotreme’s Opinion page. The two pages would like each other.
er… yah, but I meant ‘link each other’.
Thanks so much, Dem. And thanks for the like, I mean link.:-) That would work perfectly. You just solved a big problem. I think that’s the way to go. It overcomes all the limitations without the problems of a thread. Now to figure out how to do it. Off to the sandbox, I think.
Nightowl, I agree the language for any kind of official request for information should be carefully constructed. That’s why I think a lawyer should do it ;-) And please don’t think I’m offended by any suggestions made here. I really am not thin-skinned and readily admit to being fallible.
The issue of how much outrage to express is a tricky one. It has been suggested by some that I go too far and express too much outrage and by others that more outrage should be expressed. I think both criticisms have merit. It depends on your audience. For legal proceedings and to get buy-in by scientific Societies or professional organizations, your language must be measured and carefully chosen. It is possible to use polite-sounding language which is actually quite insulting if properly decoded. However, if one wants to alert the general public to an outrageous situation, you have to use language that conveys the seriousness of the situation or people will question your sincerity. I am less and less concerned about blurring the line between these two types of expression because the behaviour of Dr. Gerberding truly is outrageous.
More and more scientists and physicians are becoming extremely angry about what she has done at the CDC. Not only has she condoned the witholding of critical sequence data, she has also demonstrated profound incompetence at managing the distribution of available flu vaccines. In 2003–2004, she took flu vaccine away from poor kids to re-distribute it to the elderly, but screwed up the tracking of the vaccine and ended up throwing millions of doeses in garbage. She continues to botch vaccine distribution. The morale at the CDC is at all time low. Talented people are leaving in droves. The CDC has become a national joke among public health professionals. So, my “outrageous” statements are not too different from what other scientists and physicians are saying, just barely out of earshot of reporters. If we can get them a little more “cover”, they may raise their voices loud enough for a reporter to hear them.
When writing to your elected reps, you also need to convey a sense that their actions will have consequences. This is an election year. I used to do this for a living and you need equal parts outrage and threat.
Well said, Monotreme at 20:14.
Re the AClU; I do not believe the ACLU ever initiates legal action on its own. They weigh in on behalf of a party who is litigating an issue which may have broad constitutional implications relating to civil liberties.
So in order for them to get involved, first they must be asked to assist in a specific endeavor; and secondly the issue must have potential for broad application to a large number of citizens; and that issue must involve constitutional law - particularly civil liberties.
If one were to approach them regarding release of CDC sequences, one would have to relate how this issue fits with their mission.
I completely agree with DemFromCt’s post at 19:06. We have had discussions recently about how insulting it is for Government Regulators to be given summary sheets of ‘talking points’, and then their 6 representatives or whatever in the room before professionals say the same twenty or thirty words, in the exact same order and cadence. This is an intellectual insult: it is flat-out PLAGERISM!!!
We have brains and we should respect those that we send these letters to and therefore, you don’t get respect by using other people’s words.
So I agree with DEM. Use Monotreme et al’s template but please put use your own words. To do otherwise demeans the process which by any measure is an honourable one.
In browsing, I ran across an interesting website for Inner City press, which gets involved in FOI requests and has a public interest law center.
Website here: http://tinyurl.com/q5zbe
Excerpt:
The federal Freedom of Information Act (FOIA) was made into law by Congress in 1966, declaring that every document in the possession of federal government agencies is presumptively available to the public. Many states’ open records laws are similar to the operation of the federal FOIA.
Both for its community advocacy (combating redlining by banks and insurance companies, and consumer and civil rights issues, in telecommunications and otherwise) and for its investigate reporting, Inner City Press/Community on the Move (ICP) often makes FOI requests, to federal and state agencies. Where agencies seek to improperly withholding information, ICP, now through the Inner City Public Interest Law Center (ICPILC), often takes the issue to court. ICP has won a number of FOIA-related lawsuits, including Lee v. FDIC and OCC, 923, F.Supp. 451 (S.D.N.Y., 1996) (federal), and ICP v. NYC Dep’t of Housing Preservation and Dev’t, 1993 N.Y. Misc. LEXIS 429 (Sup. Ct., N.Y. Cty., 1993).
A number of general FOIA how-to guides already exist on the Internet; links to some of these guides at listed at the bottom of this page. Inner City’s FOIA guide, therefore, focuses particularly on the issues (and evasions) raised by the federal bank regulatory agencies, especially the Federal Reserve Board, and by state agencies, particularly state insurance regulators seeking to keep secret the information they hold concerning the fairness of insurance companies’ underwriting practices. Questions that arise in these areas call be directed to the Inner City Public Interest Law Center, via email (to FOIA [at] innercitypress.org) or by telephoning 718- 716–3540 (or faxing agency denial letters to 718–716–3161).
NewsNow has posted an article for the Albany Times Union regarding new legislation that would allow exemptions to the FOIA. http://tinyurl.com/zr45k Here are a couple paragraphs snipped from the article, titled “Keeping us in the dark”. The proposed legislation as described by this article, could really weaken FOIA.
“The legislation, introduced earlier this month and slipped into a defense funding bill, would create an FOIA exemption that would allow government agencies to deny public access to “information in the possession of the Department of Defense concerning weapons of mass destruction.” …
“Ostensibly, the purpose of the exemption is to prevent such information from falling into the wrong hands. But in truth, the government already has the right to deny access to information that is viewed as vital to national security. The FOIA contains such a provision, not to mention the government’s power to classify, and thus withhold, sensitive information.
The proposed exemption would go far beyond this, however, by allowing the government to deny access to nonclassified information without having to justify its decision. That would enable agencies to withhold information that has little or nothing to do with homeland security.
Supporters of the exemption argue that it would not “unduly restrict” public access to information on a range of subjects, including environmental impact statements and health care. But it would also grant broad powers to withhold information that is surely in the public’s interest.” …
Sorry! typo in first line should read: “article from the Albany times Union”
Here is one more telling paragraph from the article:
“One example: The federal government’s assessment of local and state plans to deal with emergencies. Citizens have a right to know if their local and state officials are doing enough to protect them. True, that information might embarrass state and local officials who are doing a poor job of improving readiness. But that’s the point. It is just this kind of disclosure that could save lives if disaster strikes.”
OP-ED NY Times.
It would appear that Ruben O. Donis (who works at CDC and wrote at least one draft for W.H.O.) has control over some sequences as indicated below.
I found this in J of Infectious disease on CDC. Sunchai Payungporn,* Salin Chutinimitkul,* Arunee Chaisingh,† Sudarat Damrongwantanapokin,† Bandit Nuansrichay,† Wasana Pinyochon,† Alongkorn Amonsin,* Ruben O. Donis,‡ Apiradee Theamboonlers,* and Yong Poovorawan*
April 2006
I think it was originally published in March 05 in Infectious Disease. When attempting to use tiny URL to obtain the short link I lost the PDF file. The study cited above excludes Donis in the acknowledgements and lists him as an author. CDC does share some sequences with some people.
The contribution of three sequences to the original study were from by Ruben O. Donis, CDC, Atlanta, Ga
Emerging Infectious Disease, Vol 8 (8) 8/2002 DNA Vaccine Expressing Conserved Influenza Virus Proteins Protective against H5N1 Challenge Infection in Mice Suzanne L. Epstein,* Terrence M. Tumpey,† Julia A. Misplon,* Chia-Yun Lo,* Lynn A. Cooper, ‡ Kanta Subbarao,‡ Mary Renshaw,‡ Suryaprakash Sambhara,‡ and Jacqueline M. Katz‡
Kanta, Renshaw, Sambhara work at CDC.
Monotreme, here’s a public domain reference for the Rebecca Carr piece. The other guy pulled it from subscription.
Public and media awareness of the CDC is without question picking up steam. If this keeps up, and I hope it will, FOIA may not be necessary.
I sent my letter to NY Newsday this morning.
Excellent, mmmelody47. The CDC can offer all the excuses they want, but what they are doing is not ethical. I think they need to realize that time is of the essence.
Well, being in the sandbox was interesting on the wiki side. Take a look at “Scientists Support Release of Sequences” on the opinion link at left. I would welcome some feedback. I still have more to add, but you can get the drift.
beehive at 23:35 - unbelievable
Singapore calls for sharing of samples in combating bird flu
Singapore has called for greater transparency and openness in the fight against bird flu, particularly in the sharing of samples to facilitate research about the disease.
Singaporean Health Minister Khaw Boon Wan said that although there were concerns about giving samples to other countries, especially among the affected countries, not doing so would lead to a deepening of the problem.
“Some countries are reluctant to share samples because they worry about intellectual property rights or not receiving a fair share of the scientific credit,” Wan said at the Lancet Asia Medical Forum 2006 on “Preparing for pandemic influenza: the avian dimension and other emerging diseases” in Singapore on May 3.
He was quoted by Malaysia’s Bernama News Agency as saying that “There is also concern that information from samples shared will be used to develop diagnostic kits and vaccines which will, in turn, be sold back to the affected country at inflated prices.”-Enditem
European – at 11:11 - “they worry about intellectual property rights or not receiving a fair share of the scientific credit,”
Could anyone believe that the overall health and well-being of the world’s population would be reduced to personal bank accounts and peer accolades?!!
Bump
Thank you for your post, European 11:11. My thoughts are to create a subsection of the page to put in supporting news items such as yours that don’t necessarily have a direct quote to pull, but are supporting the call to release the sequences in the text.
This Singapore article addresses the need for the CDC to release their sequences so that scientists in countries beyond the U.S who are withholding sequences will release theirs. Though their argument certainly has some validity, with a pandemic looming it should be clear to them that two wrongs don’t make a right.
The more scientists in other countries who will release their sequences will help to bring pressure on the CDC. Of course, like the CDC, these scientists and countries are simply offering their own excuses. The many scientists from the U.S. and other countries who are placing sequences in the publicly accessible GenBank database attest to that fact. However, in reverse, if the CDC would release their sequences, it would go far toward pressuring other countries to release theirs.
The unethical scientists in other countries are playing a child’s game of “I’ll show you what I’ve got if you’ll show me what you’ve got.” The unethical scientists at the CDC are playing the game of “I’ve got all the toys and you can’t play.” The real children of the world need a vaccine.
Nightowl, re the wiki piece Scientists Support Release Of Sequences, you learn fast. Looks good!
Posting to the wiki is easy. We should all play in the sandbox.
In reference to my post at 11:31 this morning - as I re-read my comments they seem somewhat naive….I’m still mad as hell at these sub-humans, though.
Nightowl, thanks for the link. I now use it in my Opinions on Sequences. Also, nice page of quotes on your Scientists Support Release of Sequences.
mmmelody47, it’s hard to fathom the mind of someone who is prepared to risk the lives of children to pad their CV. For all of Nancy Cox’s talk about being more open, the CDC sequences are still being witheld.
I have been trying to think of organizations, that might be allies in our quest to release the CDC sequences. In the back of our minds, I think we all know that if things are bad, people who require medications to live, will die.
Here’s what happened in New Orleans after Katrina - from Understanding Katrina During Hurricane Katrina the elderly and disabled died in the Convention Center and in their homes throughout the city of the symptoms of diseases such as asthma, diabetes, and high blood pressure that are easily managed under normal conditions but that become lethal when access to medicine and treatment is cut off.
How many diabetics, asthmatics, and people suffering from high blood pressure know that this will happen to them during a pandemic if we are not forewarned and prepared? How many know that the CDC is putting their lives at jeopardy by witholding flu sequences? Should we tell them?
After reading a suggestion from Dem to sign up for “newsbreaks” from either Google or Yahoo!, I decided on Google. The sense of urgency here and abroad has seemingly increased in the last week or so. Monotreme, your goals (sequence release and transparency) may be achieved simply as a matter of evolution.
The pressure mounts!
Monotreme- I’m following your train of thought about the elderly…What about AARP?
mmmelody47, there has been tremendous change in preparedness in the past year. The problem is, we don’t know how much time we have left and there is still so much to do.
lauralou, yes, I think AARP is a good suggestion. Many elderly are dependent on prescription drugs which will definitely be unavailable in a severe pandemic without advance warninge and extensive planning. btw, prescription drugs are one of Dr. Osterholm’s big worries. Most are made overseas. That supply chain will be among the first disrupted.
Bump!
I looked around the AARP site a little bit. I had to use the site search to find any bird flu references at all. I’m not sure if this tells us anything or not about how they are approaching the issue?
Darn. Just when I think I have the link thing figured out.
A golden opportunity. Ask the White House. Today.
I asked. the last sentence. Might I ask why she hasn’t released this vital data. Is there a valid reason. I’ve stuffed the question down the lions mouth, now lets see if it roars.
I gave them my e-mail address.
??? Huh???
The government has an interactive site. Whitehouse gov/interactive. Fran Townsend is answering questions???? Not actually, but taking them down off the internet about the Flu Pandemic plan. She isn’t answering them now, but supposedly you can ask what it is that concerns you, and supposedly they will answer eventually. Either they are flooded, or its a sop to give the public a feeling of reassurance that they are concerned, and responsive.
Thanks Lily for doing this. Let us know if you get a response.
Regarding publicity: Is there a well-known pediatrician now, like Dr. Spock or Dr. Brazelton (my child is grown so I’m out of touch)? We need parents and PTAs and other child advocates. Maybe letters to Parents Magazine. I’m thinking of soccer moms and the force that must be there if aroused.
Jane,
Drs. Webster and Osterholm are more than well prepared to speak to this audience. But this is not the at risk group for a pandemic, which is young adults, college kids. We need a re-set point for them.
Melanie, I’m not sure we know who will be most at risk from a pandemic strain. It’s true that the 1918 strain killed a surprising number of young adults, but as I recall, the death rate among the under 5′s was nearly as bad. Further, H5N1 may not behave exactly the same as the 1918 virus. Certainly, an awful lot of its victims thus far have been children. This may change, but maybe not.
In looking for allies, I would look first for those who have power and money and will stand to lose both. Those are the people who will have tenacity to force change in order to protect their interests. So I would approach leaders of industry - and labor unions.
petperson, I think you’re right. The insurance industry, especially, has a lot to lose. Also the travel and hospitality industry. Anyone have contacts these industries or the labor unions?
There are many other industries too that could/should be approached. For instance, I am familiar with organizations that operate in the area of animal welfare and animal care. H5n1 is a very real threat to companion animals, whether or not it becomes easily transmissible h2h. If an informational packet were available for me to print out, I could for instance send packets to HSUS, AHA, AKC, Petsmart Corp., PetCo Corp., and several other organizations that are leaders in this arena. I’m sure other list members know who the players are in their respective fields. You never know who will be the person to be a catalyst for change. Do we have somebody working on a packet that can be printed for dissemination, outlining the need for intervention and release of information? If each of us printed and sent say 10 packets to leaders in various types of industry, we could cover some ground that way.
Here’s a link to view H5N1 demographics as of April 6th.
I look at it with anguish as I have an eleven-year old child. Everyone on this thread has a part to play as we all will be touched by a pandemic - people of all ages who cannot get their medicine, loved ones lost of whatever age, as well as those grieving over their losses. Get the word out folks to whomever and in any way you can.
Monotreme and Dem: Thank you for your comments.
mmmmelody at 11:31, I believe you are quite astute. I agree with you, it’s awful.
Lily: Thanks for posting the action alert on the White House shendig. However it turns out, it is an education as to what is going on and how we citizens are viewed.
And thank you NauticalMan!
Regarding the release of the CDC sequences, it is my hope that all scientists at the CDC will get together and lobby Julie Gerberding to immediately change the policy. There is power in numbers. If the CDC wants to recruit and retain top-flight virologists and other scientists working in the area of influenza research then it cannot afford to maintain its policy under the growing call and support from the rest of the scientific community to release the sequences. I would imagine that the people at GenBank would be glad to help them do this without delay.
I have read Monotreme’s opinion piece, which is quite comprehensive. With minor modifications it could be used as a mail-out. The materials referenced in links could be indexed and printed as attachments to be included as a packet if they are not too voluminous.
A cover letter would be needed to introduce the material.
IMHO, it would be better to eliminate references to specific persons (such as Gerberding) and to speak only of the CDC as the source of the problem.
I would also like to see included an appeal for interested parties to file a FOI request with CDC, in hopes that someone receiving the packet will follow through with that.
Do we have someone on list who is working on getting this packet together in a printable format??
Just posting this link to the Influenza Science page on the wiki side. Lots of information and data over there including h5n1 fatality rate tables.
Monotreme: I’m thinking these two pieces from the wiki side would make good background info. The Webster piece has a reference to gene sequencing (paragraph 20) that could be color highlighted. Together the two pieces give a decent background for ramping up someone. (What do you think?) With the addition of the opinion work, I think we are nearly good to go (I have a bit more to add to the sequence quote page, but it could probably fly without).
Also it would be good to reference Flu Wiki as the quintessential information source - of course a disclaimer as well. Any suggestions of different background pieces? Third background piece could be the Cooper economics/investor piece. Pulling this together on the wiki is the way to go. We can suggest reviewing the rest of the pages on the wiki side for further information but providing the initial rampup is key.
I fully agree that an attorney should do the FOIA letter. However, I’m thinking we should pull together as much info as we can and include a FOIA letter with “Draft” plastered across the top. We can use the FOIA information from the CDC site and a template. An attorney may be able to more clearly see our request. They would always go with their own letter anyway and do legal citations. We could post our draft FOIA on this thread.
Dem: Thanks again, DemFromCT, for reading this thread so carefully. Your suggestions were invaluable. I now understand how dynamic the wiki side is.
Monotreme: I know you already new that as you do an extraordinary amount of work on the wiki pages. The Influenza Science pages are amazing. I don’t think you realized initially how wiki-illiterate I am. But I’m getting there. :-)
The best thing would be for Julie Gerberding, as Director of the CDC, to announce tomorrow in a press release that the CDC will be sending all of their influenza sequence data to GenBank. No doubt, there would be a sigh of relief within the agency and outside the agency.
This is the Wiki at work. It is wondrous to see.
Melanie, as you are part of the founding team, publisher of FluWiki, and a moderator, I want you to know how much I appreciate your work. None of this would be possible without you, DemFromCt, the Reveres, the incredible pogge, and now Anon_22. All of you are the definition of public service. You have enabled the rest of us to join you in this bipartisan effort.
Let’s hope the CDC can catch some of this spirit and release those sequences for the sake of humanity.
My letter has been sent to the WSJ.
petperson, I’m thinking that the cover letter would outline what the current status of the virus is now and the impact it may have in a pandemic. This would juxtapose with Webster’s 2003 warning in the article. Forgot to add that. You’re definitely onto the idea.
For those who start at the bottom:
The Flu Wiki supporting material:
Blocking Sequence Data is Harmful to Our Health.
Scientists Support Release Of Sequences
Science description of GenBank:
More supportive material from Science:
Science 3 March 2006: Vol. 311. no. 5765, p. 1224 DOI: 10.1126/science.311.5765.1224
News of the Week AVIAN INFLUENZA: As H5N1 Keeps Spreading, a Call to Release More Data Martin Enserink
PARIS—An impassioned call by a prominent Italian influenza scientist has renewed the debate about how to balance global health against scientists’ needs to publish and countries’ demands for secrecy. (Read more.)
Nightowl, your plan sounds good to me. Thanks again for working on this.
Melanie, my suggestion yesterday about pediatricians was not regarding who knows the health information, but who is it that parents are already listening to. (boy, mangled grammar- :( ) If a well-regarded doctor spoke out in Parents Magazine, he could start a letter campaign among parents.
If we want to target the big losers after a high fatality rate in young adults, we could try Nike, Abercrombie, Gap, Gatorade, Coke, etc. Wonder if they are run by bland managerial types or personalities who would speak out. Abercrombie’s ads make statements that anger people and get noticed generally because of their controversial nature. Bottom-line thinking is usually so short term though.
Dem, Do you know how to contact Gratton Woodson? If you could contact him and let him know what’s going on, perhaps he would be willing to help or know someone who could or already has contacts in the public health advocacy field. It would be good if we had a medical or virology person to contact a public health advocacy organization.
May I suggest the pop/rap/country music industry? The audience is huge, H5N1 targets the age range of those who make up that audience, and many of the movers and shakers in that industry have chosen to embrace big issues ( i.e.,HIV, voting, disaster relief). One name that immediately comes to mind is Sean Combs, aka P. Diddy. There are many others.
Nightowl – at 13:03
Yes, and will do.
In my view, when the history of the pandemic is written, the decision to sequester these data and specimens will be seen for what they are, ignorant acts of those who placed their own interests or fear above the health and safety of humankind. History will look back on these events with the cruelest judgement.
Nevertheless, I understand the rationale of academics who have deposited their viral specimens with the WHO with the promise that they will not be released until the scientist’s article is published. I can see why the CDC wants to keep their sequences secret so they can’t be used as a bioweapon. Then there is the interest of those who seek to profit from the vaccine business should their viral sequence be the ONE that everyone needs to make a life saving vaccine.
These concerns are all valid and worthy of consideration. The task is to weigh these interests against the risk to human health resulting from maintaining restricted access to this data. There is good reason to think that the benefit of opening these databases to the world scientific community makes the most sense given the risk. This action would be the best way to harness the genius of humankind in the effort to deal with this paramount threat.
In the event that we experience a severe pandemic, those responsible for restricting access to this critical information are likely to be held culpable for their acts to the extent that having open access to this information could have reduced the tragic results of a pandemic.
A severe influenza pandemic will have many victims. Some will succumb to the disease. Others to the consequences of the civil disorder associated with the pandemic. At some point, in the aftermath of the pandemic, a reckoning will take place when the survivors will collectively take revenge upon those they come to blame for the unnecessary deaths experienced during the pandemic. While there will be many deserving and undeserving victims of this retrospective inquisition, the bureaucrats and scientists who have supported the sequestration of this crucial data will certainly be numbered among those worthy of prosecution. Their fate will be nothing compared to the suffering and death they caused by their enforcement of the present policy.
Grattan Woodson, MD, FACP
“..Survivors will collectively take revenge upon those they come to blame for unnecessary deaths..” Yes, yes, WE WILL.
The Doctor – at 20:13 - your notes above to those of us that have supported Monotreme’s mission for the release of critical data to GenBank is most welcome. Thank you.
also subjective probability estimates and expectation values are kept secret.
There are some “private” numbers given by experts but these may not be
given in public.
I’m very pleased to notice that many scientific articles about H5N1
are freely available online, e.g. at CDC-webpage.
Others however are only available to subsctibers of journals like Nature.
This also reduces the amount and productivity of research.
I guess that many students and privates are willing to read
these to inform themselves and teach it to others or even to
contribute to research. We should encourage this and with such
a subject about hundreds of millions possibly dying there should be
an exception and all information freely available.
As for the sequences : is it at least possible to get a list,
which sequences are available to insiders, without revealing them ?
And the expected date, when they will be published ?
lauralou,monotreme, make a password-protected list available only to the world’s top 16 fluliticians with the names of those who will be the first to be put to the wall (or lose their job at least) when the reflulution starts !
The NEJM, for example, and Nature and Science have been reasonable about providing free and open access to flu articles even though they are subscription.
anonymice,
Please choose handles. Otherwise you all just blend into the pool of “anonymous” users and we can’t tell you apart. If you want your comments to be taken seriously, give yourselves some form of identification.
Dr. Woodson, thanks for your support. But just to be clear, the CDC is hoarding H3N2 sequences as well as H5N1 sequences. Further, they have participated in the deposit of the 1918 virus sequences. So, there is no credibility to their claim that they are witholding their database of flu sequences because they might get into the wrong hands. The only reason the CDC scientists are witholding flu sequences is to have exclusive access to them for publication purposes.
The NIH has deposited thousands of H3N2 sequences. The US Navy (NAMRU-3) has deposited H5N1 sequences. The scientists at these institutions have decided that the public welfare is more important then their CVs. The CDC scientists have made the opposite decision.
Bump!
“…Michael Osterholm of the University of Minnesota spelled out the issues to a room full of experts gathered by the US Institute of Medicine. “After the pandemic occurs, there will be a post-9/11-like commission,” Osterholm said, referring to the high-level US panel that investigated preparedness against the 2001 terrorist attacks. “And many scientists will be held accountable to that commission for what we did or didn’t do to prevent a pandemic.” The same will be true for government officials and business leaders who control our ability to deploy an effective pandemic vaccine…”
Source: DAWN: Bird flu flutters poultry market (in the middle of the article)
According to the latest study done on bird flu by Grain, an eminent research organisation, the password for WHO’s database of bird flu sequence data, the most important in the world, is available to only 15 laboratories worldwide. This sequence data is extremely valuable in the global race for bird flu vaccines and diagnostics – a market that could prove crucial if a human pandemic breaks out.
Some scientists and governments are now publicly demanding that the WHO make the data public. But it refuses to do so saying that this would discourage countries and some of its collaborating labs from submitting data, because they want to retain rights over the information.
Although the WHO doesn’t name, the study says, it’s clear that the US is a major obstacle. The US Centre for Disease Control (CDC), one of four WHO “Collaborating Centres” on influenza and the nerve centre of the US government’s global influenza surveillance programme, refuses to make most of its sequence data public for it thinks it can jeopardise its vaccine R&D partnerships with private companies.
The fact is that a few major labs in the industrialised countries are gaining control over vital genomic information through their privileged position in the international bird flu effort, with the WHO facilitating this process.
The Grain study says that the WHO has no authority over its collaborating laboratories and unless there are clear agreements, there’s nothing to prevent these labs from cutting exclusive deals with pharmaceutical corporations, which could generate serious drug access problems for developing countries if a human-to-human transmissible strain of the bird flu virus emerges.’‘
I haven’t found the GRAIN study the article refer to.
The outrage is building.
The GRAIN article is here. http://grain.org/articles/?id=12
The article is quite well referenced.
bump
thanks, beehiver!
Thanks Dem, Dr. Woodson, European, and Beehiver. (I’m still working!)
The Center for Disease Control (CDC) needs to release the influenza sequences now. With international pressure mounting and the public’s health at stake, one would think that ethical scientists at the CDC would be successfully lobbying Dr. Julie Gerberding (Director of the CDC) to place the sequences in GenBank, the publicly accessible database at NIH. The reputation of the CDC affects all scientists that work there.
Monotreme - I regret that I have not received one single response regarding my letter to politicians or the several newspapers written. Perhaps my letter was not crafted correctly from your comments and notes on this thread. Disappointing certainly, but not surprising.
Thoughts? Comments? Suggestions?
Possibly a re-write with a more forceful opening may be more successful.
There is only one human H5N1 sequence (HA and NA) from Indonesia publicly available (at Los Alamos).
Closed to increase Forum speed.