Real-world lessons learned

1) a pandemic can be a lot milder

than I ever anticipated.  Which is good.  But there will probably be knock-on effects in the form of even more severe pandemic skepticism afterwards, if things continue like now for another 6 months.  

2) TPTB are making it up as they go along (which we already know) but what I learned is there are huge variations as to how willing they are to admit that everyone is just playing by ear.

3) TPTB also still need to learn that with the internet, people who want credible, evidence-based information are no longer restricted to official pronouncements.  Which means it's better to admit to uncertainties and inadequacies than to be falsely confident either of their knowledge or of the safety/effectiveness of interventions.  Sure the media will be like sheep and report accordingly, but erosion of confidence is a path of no-return, even if the path is entered upon in non-conspicuous ways initially.  Eventually, the momentum for truth overtakes blind faith in experts, and people vote with their feet.

4) We need better, safer vaccines available sooner.  A late, slow, vaccine of uncertain or even questionable safety consumes as much or even more resources in implementation, with diminishing benefits.  

5) That schoolchildren are the key to early, rapid transmission is confirmed over and over again.  I don't believe there is any doubt that early school closure WORKS for pandemic mitigation.  What still needs to be settled, is when do the benefits justify the costs.  That is a social consensus question that will require even more attention and leadership to resolve, than getting better vaccines...  

6) It ain't over till it's over.



All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

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by: SusanC @ Tue Dec 22, 2009 at 02:10:40 AM UTC

one more lesson

There's nothing like a crisis that increases your volume of reading drastically and exponentially.  It's important to take notes and make summaries, because the number of articles you read can increase so quickly you won't remember where you have come across a particular point.  Also need to know where you've filed those notes - I still need to figure out a sane system for information retrieval ;-/  

And, if all else fails (ie when your brain is out of RAM), send yourself an email.  You can find information hidden in emails faster than if they were in files....



All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

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by: SusanC @ Tue Dec 22, 2009 at 02:27:39 AM UTC

[ Parent ]

In particular,

thanks for the email suggestion. I plan to try it, not just for the flu matter.

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by: ssal @ Tue Dec 22, 2009 at 03:27:46 AM UTC

[ Parent ]

the law of onions

a scientist friend of mine complained to me recently how his work is like peeling back onions - you open up one layer only to find more layers inside.  My response to that was, you don't just get MORE LAYERS, you get MORE ONIONS!!  

It seems to ME that when I try to find an answer to a question, I always end up with more and more questions that go in all sorts of directions, and I have a hard time keeping track of how exactly I should focus a particular piece of writing or enquiry, because one thing always leads to 6 other things and so on ad infinitum!!  

This pandemic shows how little we know, and how much of what we think we know are based on flimsy or non-existnnt evidence.



All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

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by: SusanC @ Tue Dec 22, 2009 at 20:54:52 PM UTC

[ Parent ]

re "school closure", "not over" and more

5+) Like in other areas, school closure is not just a matter of "pros" and "cons", but also as "how" and "what else".  Some thinking has been done, but it's not been wide, varied and pervasive enough.  I'm not sure there's a big market for video-games that will ease this into more people's thinking.  But a general category for said games?  Yes.

6+) Re "it's not over till it's over", one thing we'd need is serum samples taken soon from a number of people, all over the world, so we may really know when enough people have become serologically non-naive.  For them, it's over, in the sense that it's not such a new virus anymore.  (Yes it can mutate, and it will, but it's not so new anymore.)  For the rest, it's a build up of herd immunity.

7) Re "panic", I'm not sure if this learning will apply to other situations in the future, but in this one my perception is there's a wide variety of people regarding our ability for fears to sink in.  Some people have an easy trigger, some not so easy, some are in denial even after they are dead.  We'll need to factor that in in further, ahem, episodes.

And yes, re 1) "a pandemic can be a lot milder than I ever anticipated", I must happily eat my own words.  (So far.)

You arm yourself to the teeth just in case.  You don't leave the gun near the baby's hand.

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by: lugon @ Tue Dec 22, 2009 at 13:28:23 PM UTC

[ Parent ]

What I Learned A Little Different Version

1.  If the CDC and WHO have a heads up that a Pandemic is coming they will do their best to get a vaccine out as soon as they can.  It may not be out as soon as needed but it will be there within 9 - 12 months.

2.  The Vaccine for H1N1 did not cause many problems for people.  No GBS widespread or any horrible side effects for the masses. Hope this remains true for any other vaccines.

3.  The CDC was upfront and honest at the meeting I attended and I was impressed with the knowledge they had at that time.  I hope the CDC will keep up and have the resources needed and the God given knowledge to help us in a time of Pandemic or any other disease that comes upon us.

4.  Main stream media is messed up and no one can trust them on a Pandemic just as we can't trust them on who they support for Political offices.

5. Teens and children can not be stopped from getting the virus from any Pandemic...lesson learned by me, "If the Pandemic is very deadly SIP!"  My kid got it but with Tamiflu he did very well.

6.  BE PREPAIRED!  No matter if it is a Pandemic, Flood, Earthquake, Tornado, or a Blizzard.  You need to have at least 6 mos to 1 year of provisions for your family, a way to have potable water, a way to cook and stay warm if all services are out.  If a neighbor is in need help them, good for the soul.

7.  Sites such as this one are well informed and gives out some very good information that would not be known to computer novices like me.  A huge help to millions if they know about great sites like this one.

Merry Christmas!

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by: FluMom @ Tue Dec 22, 2009 at 02:32:33 AM UTC

terrii c comment

thanks!

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by: DemFromCT @ Sun Jan 03, 2010 at 13:48:11 PM UTC

[ Parent ]

eh, that's terrific

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by: DemFromCT @ Sun Jan 03, 2010 at 13:48:26 PM UTC

[ Parent ]

Great Summary!

Yes, I think it's important to be realistic about the limitations of government and other large, nationwide or statewide agencies -- whether through intent or just inability. I was appalled at media response, but then again, I have become increasingly appalled at media response in general. I have come to rely on Fluwiki for my flu news -- period.

I do think that most of TPTB were trying to keep up with this pandemic, but unless/until they see people dropping in the streets, they will consider their political realities more "real" than flu realities... it becomes a CYA and Save Your Job situation, and they are as human as anyone in that area...

I have become disgusted at "grasshoppers" in general and have begun to take a very harsh attitude toward helping them... sorry... tired of picking up after others as well as myself... and I think the biggest lesson I've learned is that despite all our high-technology, the facts of human nature trump, and there will be unnecessary deaths and disruption if there is any kind of crisis. Sad, but after this I won't be convinced otherwise...

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by: Cathy M @ Tue Dec 22, 2009 at 03:02:59 AM UTC

Yet another version . . .

I think the CDC has proved to be as incompetent as the press - I admit to being more disappointed in the media than I am with governmental agencies, since I expected more from the press than from TPTB.  What I've seen is the CDC changing ways they count (or fail to count) cases, and conferences where they've neglected to answer the questions asked while handing out platitudes as though they were pearls of wisdom from the lips of someone's god.

What I hope the CDC/WHO learned is that there may well come a day when "as soon as they could" might not be good enough.
In this case, to this point, we've been lucky as far as the vaccine issue in that at least there has been a vaccine made available, albeit later rather than sooner.  In a high CFR pandemic, their best would be so far from good enough that it could well prove useless in the face of real catastrophe.

I've seen that we could prevent our children from becoming sick and dying if we're willing to take appropriate measures such as school closures and even border closures.  First, we have to be willing to take the economic hit this would generate.  In this case, we weren't willing, and children have died.  We also weren't willing to prescribe antivirals to everyone who might have benefited from them, and I hope we've learned that the better choice might be greater availability (I hope, but I doubt.)

What else I hope we've all learned is that this particular pandemic isn't over yet, and that we all still have a lot left to learn.

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by: Clawdia @ Tue Dec 22, 2009 at 04:28:27 AM UTC

[ Parent ]

one thing I learned is that no matter how good a job you do

someone won't be satisfied.  ;-)

That's okay. Someone has to push from outside. But for those committed to "they suck", no amount of good work will un-suck the effort.

Contrast this from Donald McNeil, NYT:

The outbreak highlighted many national weaknesses: old, slow vaccine technology; too much reliance on foreign vaccine factories; some major hospitals pushed to their limits by a relatively mild epidemic.

But even given those drawbacks, "we did a lot of things right," concluded Dr. Andrew T. Pavia, chairman of the pandemic flu task force of the Infectious Diseases Society of America.

Federal officials deserve "at least a B-plus," said Dr. William Schaffner, chairman of preventive medicine at Vanderbilt University's medical school.

Even Dr. Peter Palese, a leading virologist at Mount Sinai Medical School, who can be a harsh critic of public policies he disagrees with, called the government's overall response "excellent."

This isn't just back-patting. Here are the tough decisions:

For that reason, the relatively cautious decisions by the nation's medical leadership contained the pandemic with minimal disruption to the economy.

For example, in the early days, they ignored advice to close the Mexican border and pre-emptively shut school systems. They released part of the national Tamiflu stockpile, but did not give it to millions of healthy people prophylactically, as Britain did. They ordered vaccine made with a 50-year-old egg technology rather than experimental methods. They bought adjuvants - chemical "boosters" - that could have stretched the first 25 million vaccine doses into 100 million, but did not use them for fear of triggering a backlash among Americans made nervous by the messages of the antivaccine movement.

To alert the public without alarming it, a stream of officials - from doctors in the navy blue and scrambled-eggs gold of the Public Health Service to a somber President Obama in the White House - offered updates, at least twice a week for months.

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by: DemFromCT @ Sun Jan 03, 2010 at 13:52:47 PM UTC

[ Parent ]

link

U.S. Reaction to Swine Flu: Apt and Lucky
http://www.nytimes.com/2010/01...

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by: DemFromCT @ Sun Jan 03, 2010 at 13:57:50 PM UTC

[ Parent ]

"rely on FW for news"

And, honestly, also for great quality thinking.  You know, that thing we do with our brains when we have some or even lots of information, but never all the information we'd like to have.

From the pollyannaish to the uberparanoid to the hard-facts-only to the you-name-it, we've provided a wide range of role-models for each other in the non-hive-mind, haven't "we"?  Kind of fun if not many are injured. :-/

You arm yourself to the teeth just in case.  You don't leave the gun near the baby's hand.

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by: lugon @ Tue Dec 22, 2009 at 14:02:52 PM UTC

[ Parent ]

"From the pollyannaish to the uberparanoid to the hard-facts..."

All the blues thats fit to print.

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by: Mr White42 @ Wed Dec 23, 2009 at 01:19:07 AM UTC

[ Parent ]

AlohaOR, excellent points. To quote John Steinbeck,

I would add "the best laid plans of mice and men oft go awry."  When the pandemic first broke, my husband and I set into place protocols for keeping this virus away from our handicapped son.  I became the uber czar of hand sanitizing, strictly enforcing it for everyone in the household, and provided all immediately family members with small hand sanitizers for use outside the home. We allowed no one in his room except for immediate family and took him nowhere except for hospital visits (where he wore N95 masks over both his mouth and trach).  We were also extremely fortunate to have such a dedicated pediatrician who called us into his office to give both James and me the vaccine as soon as he received his shipment.  Despite all our precautions, our son still caught H1N1 two weeks after his vaccination and was hospitalized.  Because of the vaccine, he had sufficient protection to have only a mild case of this flu.  Although I am grateful that it wasn't worse, I feel that we dodged a bullet.  What if this had been something worse, like H5N1?

"I am opposed to any form of tyranny over the mind of man."  Thomas Jefferson

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by: History Lover @ Tue Dec 22, 2009 at 19:36:28 PM UTC

I think for every one of us

we can only plan and prepare as best we can, and then do our best when things happen.  We can't ever avoid all hazards in life, and we can't predict them anyhow, so it's good to count blessings, including eg having a good pediatrician to look after your son!!



All 'safety concerns' are hypothetical.  If not, they'd be called side effects...

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by: SusanC @ Tue Dec 22, 2009 at 19:42:16 PM UTC

[ Parent ]

Susan, I agree with you completely. n/t

"I am opposed to any form of tyranny over the mind of man."  Thomas Jefferson

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by: History Lover @ Tue Dec 22, 2009 at 20:08:05 PM UTC

[ Parent ]

Or what if you hadn't taken all those precautions,

and he caught the flu earlier, before the vaccine could take effect?  

Hope he's doing well now!

"The truth does not change according to our ability to stomach it."  Flannery O'Connor

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by: Jane @ Tue Dec 22, 2009 at 20:44:14 PM UTC

[ Parent ]

Exactly, Jane!

He is over the flu and has not had any more serious respiratory problems this fall (knocking really hard on wood).  There were other children in the hospital, however, who weren't so fortunate, with very high fevers.  The pediatric wing was so full they put us in a post-op adult area.  The nurses were extremely nice and did a great job with my boy, but they were not used to children with multiple disabilities.  Children like this have dozens of medications, respiratory treatments, special equipment, and specialists coming and going all the time.  It was quite an experience for all of us.

"I am opposed to any form of tyranny over the mind of man."  Thomas Jefferson

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by: History Lover @ Tue Dec 22, 2009 at 22:37:15 PM UTC

[ Parent ]

Burns, not Steinbeck...

Sorry, the literature-fan in me couldn't let that one go... the correct quote is:

The best laid schemes o' mice and men
       Gang aft a-gley

Robert Burns, Scots poet, best known for Auld Lang Syne! ;-)

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by: Cathy M @ Thu Dec 24, 2009 at 01:56:14 AM UTC

[ Parent ]

One lesson is that we have to be our own advocates.

If the signs and symptoms of someone's illness aren't clearcut and don't include all the universally-recognized ones, some doctors and call centers will deny that a patient has the flu.   As patients (or parents), we should bring print-outs of current CDC advice to doctor's appointments.  

Perhaps also we should be sure, before a crisis, that our doctors respect our opinions enough to listen to our concerns.

"The truth does not change according to our ability to stomach it."  Flannery O'Connor

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by: Jane @ Wed Dec 23, 2009 at 19:55:32 PM UTC

Location. Location. Location.

And I don't mean real estate.  

I was really struck during all of this by how much where you lived impacted your ability (or kids) to get vax'd.  For several weeks, while everyone wanted to get vax'd, no one could seem to get it.  Out of habit people assumed they would get vax'd through ther physicians, yet most physicians were having a hard time getitng it.  People  didn't even realize they had a local public health department, let alone that was who was going to be handling most vaccinations this time.  

My experience in CT was that there were vast differences in which towns received vaccines, how they got the news out to the public, and how well each executed vax programs.  Up until now I had never been impressed by our local agency, which is actually shared with another nearby town due to our small size.  But they were a crack operation in getting the news out to those who needed it (on-line, emails, newpapers), getting clinics up and running and fully staffed in no time.  All this while other towns floundered and residents got frustrated.  

This, of course, was pure luck.  We researched schools, etc. when moving here.  Who knew we should have researched public health as well.        

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by: LauraB @ Sun Jan 03, 2010 at 00:17:42 AM UTC

great point

tremendous local variation. This part of CT had a reasonable communication effort, vaccine when available, staged release, cooperation with VNA and local health and local docs.

We were very lucky it wasn't worse, or things would have fallen apart.

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by: DemFromCT @ Sun Jan 03, 2010 at 13:54:50 PM UTC

[ Parent ]

It gives me shivers thinking about what ifs...we go luck all around this time n/t

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by: LauraB @ Mon Jan 04, 2010 at 19:24:26 PM UTC

[ Parent ]

One size fits all?

Is there a policy about taking special care of vulnerable populations, such as children with cystic fibrosis or (certain?) neurological/developmental conditions?    Do all parents of children with "developmental delay" realize the risk of flu for their children?

Sept. 2 (HealthDay News) -- Nearly 500 Americans have died of complications from the H1N1 swine flu since the virus first surfaced last spring, including at least 36 children younger than 18, a new government report shows.

And 67 percent of those children who died had at least one chronic high-risk "neurodevelopmental condition," such as epilepsy, cerebral palsy or developmental delay, U.S. health officials said during a news conference Thursday. [snip]

http://www.gulfbend.org/poc/vi...

History Lover wrote about her son's experience, and I wondered if she had gotten any warning from doctors, or if all the responsibility for protecting her son was on her.  

Are the children most at risk already under the care of specialist doctors (pulmonary or others)?  Did medical associations recommend telling parents that their children need extra protection, such as isolating them until they can be vaccinated?

Does any official body, such as the CDC, Public Health departments,  the American Academy of Pediatrics, and the Dept. of Education, have the responsibility to protect these kids?    

The accounts of deaths posted on FluWiki are painful to read, especially when there were "underlying conditions" that should have been a warning.  It seems to me that some deaths might have been prevented by making exceptions to attendance rules and allowing parents to keep home their children who have conditions making them more vulnerable to serious complications.  It seems to me that it wasn't very far into this pandemic when it became clear that some children were more at risk than others, but did anyone deliver the message, or were authorities more afraid that all parents would get upset and keep their more-healthy kids home too?  (And what if they did, until vaccine could take effect?)  Was there anyone in charge of the ethics of full versus partial disclosure and balancing children's lives with the messiness of school closure for some or all?

The vaccine wasn't ready when school opened, yet all parents were told to send their kids into that crowded and germy environment, having a nation-wide Flu Party.   (Yet in the Spring, Flu Parties were specifically warned against, as putting children in danger unnecessarily.)   We don't know if there will be a third wave or if it will be more virulent.   Even though many children have been vaccinated, we don't know if they will have full protection from strains circulating in the future.  There may be time to discuss improvements in how we protect our children.   Or will we keep "One size fits all" (and you're all expected to be in school)?

=-=-=-
Here's an example of attention to individual needs when vaccine quantity is limited.

Fall flu wave tested pediatric hospitals with tough choices

Lisa Schnirring * Staff Writer

Jan 5, 2010 (CIDRAP News) - In early August 2009, when the pandemic virus started tearing through southern states where schools had already started, the pandemic preparedness team at Children's Hospitals and Clinics of Minnesota felt a sense of foreboding that the virus was poised to strike the area a second time.

Pediatric hospitals throughout the United States have been at ground zero during both waves of the pandemic. The patients they care for are among the groups at highest risk for complications from the pandemic virus-young people with chronic health conditions such as asthma, diabetes, neuromuscular disorders, and forms of cancer.
[snip]
Speeding vaccine to the most vulnerable
Chawla said that when flu activity first started picking up across the nation in the fall, it became clear that the vaccine supply would come later than expected, and in smaller quantities. The Children's Hospital system developed a plan to get vaccine to the most at-risk children and identified them through the outpatient clinics at both hospital campuses.

She said the system's information technology department helped pandemic response leaders identify all of the hospital and clinic patients, based on diagnostic codes, that were in the priority groups recommended by the US Centers for Disease Control and Prevention (CDC). "About 19,000 of our patients met the criteria, but we knew we wouldn't receive that amount of vaccine right away," Chawla said.

The hospital had to do its own risk stratification in each illness category, she said. For example, not every child with cerebral palsy was scheduled to get the very first vaccine doses, only the ones who couldn't manage their secretions. And they knew they wouldn't have enough vaccine early on to offer it to all kids with diabetes-only the ones who had glycosylated hemoglobin (HbA1c) levels greater than 10 with poorly controlled disease.

To make the tough decisions, the hospital used its in-house ethicist and brought in another ethics expert from outside, Chawla said. "We wanted to look at the issues as globally as we could." [snip]

http://www.cidrap.umn.edu/cidr...

"The truth does not change according to our ability to stomach it."  Flannery O'Connor

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by: Jane @ Sat Jan 09, 2010 at 17:44:26 PM UTC

History Lover's comment is farther up this diary:

http://www.newfluwiki2.com/sho...

"The truth does not change according to our ability to stomach it."  Flannery O'Connor

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by: Jane @ Sat Jan 09, 2010 at 21:14:24 PM UTC

[ Parent ]

Jane, I just saw your comment.

My son has been out of school since his surgery last year.  He is still unable to attend school, because of complications from that surgery.  So when the pandemic broke out last spring, his pediatrician discussed it with us and agreed that James was one of the most vulnerable children.  And when he received his supply of vaccine, we were one of the first families he called.  I know that we have the best pediatrician possible, and he always supports any concerns we have.  

I also know, however, that not all other special needs children have such excellent care.  I did not hear of any particular steps taken for other special needs children who were attending school or who were homebound, and this did concern me.  Most special needs children not only have developmental delays, they also have other conditions, such as respiratory, cerebral palsy, epilepsy, etc.  In addition, they are not isolated from the regular education children, often participating in classes and other activities with them.  This group is at considerable risk, and I hope that, should there be a third wave, local educators and health care officials will implement special procedures to ensure their safety.

"I am opposed to any form of tyranny over the mind of man."  Thomas Jefferson

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by: History Lover @ Mon Jan 11, 2010 at 03:37:01 AM UTC

[ Parent ]

Your family doc

I think it is VERY important to have a doc you can trust and have a relationship with, as well as one who is sensitive to the public health implications.
Because of a long-standing relationship, previous conversations,and the fact that my doc knows both me and my job:when I awakened one day with terrible flu like symptoms,she called in tamiflu ( for me and family members) to a drive thru pharmacy,faxed a dr.'s excuse to my work,and reminded me about staying isolated. (Like I would forget!)It was very nice to be able to accomplish everything by phone.

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by: dogsma @ Tue May 11, 2010 at 14:24:13 PM UTC

Local Hospitals Readiness for APandemic

During the last Flu pandemic I was in two different hospitals that served two different communities.

- Navy Hospital that serves active reserve, and retired personnel and families.

- Local County Community Hospital

What I found was that the money spent prior in training, supplies, and manpower is what made the difference between how each hospital reacted to the flu.

Over all the Navy Hospital reacted with enough personnel, aux locations (building) for screening and supplies/equipment to handle their approx 8500 people.

The community hospital Approx (200,000 people)used tents, when they found that people were spreading the flu throughout the hospital, including infecting medical personnel.  By the 3rd week they were refusing people who did not have a life threatening status.  The local medical service people of the country had to open clinics up to provide flu related services.

The county had gone through an exercise about 3 months before with the exercise having only a 10% increase in patients.  

The latest results I have seen for my county had a 16 percent infect rate.  Very high but this was over 6 months.

  No warning - no way to fight - no way to win!  
We need help in our local communities to survive. Remember that quote:    "...No man is an island..."

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by: RICHARD-FL @ Thu Aug 18, 2011 at 01:34:26 AM UTC