There are threats, then there are threats

In April of last year (here http://forums.homedialysis.org/showpost.php?p=6101&postcount=1 ) I asked:

“Should we give it [pandemic] as much or less consideration as we do other natural disasters – from earthquakes to ice storms – or is this something beyond what has been seen and what is prepared for?”
No one answered my question but I have continued to ask. Now I have my answer.

Yes. The answer is manifest, the answer is yes. Yes, pandemic flu is different from any other disaster I can think of threatening the provision of dialysis. Yes, if the CDC pandemic influenze planning scenario hit in the next two years, it would be the equivalent of an Earth destroying asteroid for the renal industry. Planet Renal would be distroyed.

In this post (here: http://forums.homedialysis.org/showpost.php?p=11443&postcount=36 ) I outline the variables that are unknown and that will determine the severity of a flu pandemic.

“What percentage of the population will catch the virus once it can pass easily among people? This “clinical rate” is a key number and there is not a lot of data on how many people in a normal flu season catch the flu and there isn’t any data on what percentage caught the flu the last time a pandemic occurred. In my reading the usual number is 30 to 50% of the overall population will catch the flu. A 50% clinical rate is used by most of the planning models that I have seen.

Of the people who catch the virus, what percentage will die? To date the case fatality rate (CFR) for H5N1 is 50% overall, however, most experts think this number will come down if the virus recombines into a version that can pass easily among humans. The low end of the range of CFRs is 2 to 5%.

The pandemic would hit in three waves, it is thought that the second wave would be the worst. I think a very optimistic prognostication about the worst wave would be for 30% of the population to get sick and a CFR of 2%. This is, as near as I can tell, the best case scenario.”
This post is not exactly accurate. The CDC scenario foresees a 30% attack rate (which is the term I should have used, not clinical rate) and a 2% case fatality rate (though the implications of some planning decisions are that they are planning for a 6% over all fatality rate). One question I need to research is: what exactly is meant by the attack rate?

Does the attack rate mean that after two years, once the flu has run its course, that 30% of the population will have had the flu? Or does it mean that with each wave (it is reported that historically there are three waves) 30% of the people who have not caught H5N1 will catch the virus? This would mean 30% sick in the first wave, and 21% in the second, etc. I think it is the first meaning because I have read that it is expected that the attack rate will differ during each wave, peaking in the second.

So that would be good. It would mean that once it is over, and will be over at some point, 70% of the population never got sick and of those that did get sick 98% lived.

So yeah, if I was a urinator and I believed the CDC scenario was as bad as it could get I would not be as worried. But I am a dialyzor and I believe that if a CDC scenario pandemic hit today (and there is some small chance it could) it would not matter if you caught the flu or not. The pandemic would be 100% lethal if you need incenter dialysis to live.

I seem to be the only one pointing this out and I am around smart, knowledgeable people. People who are writing the papers, outlining the pandemic response plans that you can find on numerous government sites. I want someone to talk me off the ledge. I am waiting for a doc or a pandemic planning official to say “You are wrong. You have not considered this.” Instead I seem to be talking people up on the ledge with me.

And that is good. We must talk about this, we very well may have time. Hell, it might not ever happen. However, current emergency dialysis plans are the wrong plans for a pandemic. In an emergency like an Earthquake or hurricane, if you are unable to operate half the units in the area or you only have half the capacity you need to serve the numbers of dialyzors needing dialysis, what do you do?

You cut everyone’s run and give a little dialysis to everyone, with the goal being that you are trying to maintain frequency. In a pandemic, if you were at half capacity e.g. staffing shortfalls, this would be a bad strategy. You need to conserve supplies, getting people - staff and dialyzors - to the unit is your biggest problem and not spreading the flu is a goal. The right strategy? Decrease frequency, increase treatment length. Eight hour runs two days a week would be better then cutting everyone’s time by 33%. Eleven hour runs 3 times in two weeks would be better then ctting everyone’s time by 50%. I think clinically and logistically, but certainly logistically.

I know. I am Scribner Dialysis Product guy but think about it and then tell me I’m wrong.

I need hope. I could not go on without hope. So what you ask is my vision? I say it should be our finest hour. Are you prepared to demand more services, resources so you can be kept alive? Or are you prepared to stand up, relieve staff and dialyze each other? Our staff will need to care for their families who may be sick, their kids who are home from school or yes, the wider community.

Of course some would stand with us but shouldn’t we home dialyzors be prepared to be the answer? Shouldn’t those dialyzors who are able bodied prepare to be the answer?

It most likely will not happen in the next two years but what would we want to have in place if it struck in 2009? In 2012?

The renal industry, the professional organizations, the partners and the coalitions must take this threat seriously and on its own terms. It is not like an earthquake or an ice storm as bad as those can be. We will need new thinking to do our best.

It is unlikely. Pandemic flu is unlikely today but there is a chance. How could we justify being so flat footed, if it were to hit today or in a year. The first step is admitting you have a problem. The first solution is to show leadership.

We need transparent planning, renal industry planning that is pandemic specific. And my answer is the dialyzors. The dialyzors are the solution, we are not the problem.

Dang Bill, you sure scare the heck out of me BUT hey, maybe a bit of
exaggeration? I know we need to prepare but wouldn’t it be wise to get firsthand information on affected countries that have dialysis patients? I think ther CDC is already researching and gathering data.

On the other hand, after seeing what happened during Katrina disaster that really makes me think again! What went wrong in that situation? Who’s fault was it? Will that happen again? And if it does happen again, who’s the winner? …I guess no one wins.

I do think its very important to formulize a disaster plan and I believe every clinic has protocols to follow and we were given instructional material to follow. Also, centers hold disaster drills each month, but when it comes to Pandemics like you say our lives are a stake and its something quite scary for each one of us, none of us want to face death!

When the time comes we do all we can to fix these problems. What are affected countries doing to fix it?

I really wish it was Gus. I want someone to show why I am wrong. I’m not trying to scare people I want people to talk about this, think about it and if it happens be as prepared as possible and avoid mistakes. I don’t see the advantage of keeping my thinking to myself.

The nature of pandemic flu is that it “pops”, and it has never popped since there has been dialysis. 1918 was a very different world but the histories of that time are available for anyone to read.

[quote=Gus;11886]On the other hand, after seeing what happened during Katrina disaster that really makes me think again! What went wrong in that situation? Who’s fault was it? Will that happen again? And if it does happen again, who’s the winner? …I guess no one wins.

I do think its very important to formulize a disaster plan and I believe every clinic has protocols to follow and we were given instructional material to follow. Also, centers hold disaster drills each month, but when it comes to Pandemics like you say our lives are a stake and its something quite scary for each one of us, none of us want to face death![/quote]

Hurricanes, earthquakes, ice storms are different and the response dialysis-wise is well understood. The planning for a pandemic needs to be a separate effort because it is not anything we’ve had to deal with, it will be happening everywhere at the same time. If it happens. These disaster plans will not hold up to a pandemic - as I pointed out - and they need to be reevaluated in a sober way.

Gus this is a worldwide problem with little worldwide leadership. Dialysis is not on the radar of those thinking about scenarios and planning. Try to walk yourself through a day in the life of an incenter dialyzor during a pandemic flu wave - it falls apart pretty quick.

What we can do is prepare. Seek a vision that allows us to do our best.

I call for a dialyzor militia with the constitutional right to cannulate bare arms.

Seriously when we lost our kidney function we did not loose our adulthood. We have the duties and obligation of all citizens and the only way I can see this working is if we are ready to step up.

[quote=Bill Peckham;11887]I really wish it was Gus. I want someone to show why I am wrong. I’m not trying to scare people I want people to talk about this, think about it and if it happens be as prepared as possible and avoid mistakes. I don’t see the advantage of keeping my thinking to myself.

That’s sensible, nothing wrong with that.

The nature of pandemic flu is that it “pops”, and it has never popped since there has been dialysis. 1918 was a very different world but the histories of that time are available for anyone to read.

Hurricanes, earthquakes, ice storms are different and the response dialysis-wise is well understood. The planning for a pandemic needs to be a separate effort because it is not anything we’ve had to deal with, it will be happening everywhere at the same time. If it happens. These disaster plans will not hold up to a pandemic - as I pointed out - and they need to be reevaluated in a sober way.

Gus this is a worldwide problem with little worldwide leadership. Dialysis is not on the radar of those thinking about scenarios and planning. Try to walk yourself through a day in the life of an incenter dialyzor during a pandemic flu wave - it falls apart pretty quick.

What we can do is prepare. Seek a vision that allows us to do our best.

I call for a dialyzor militia with the constitutional right to cannulate bare arms.

Seriously when we lost our kidney function we did not loose our adulthood. We have the duties and obligation of all citizens and the only way I can see this working is if we are ready to step up.

[B] So what are the questions that concern you the most?

  • Do we wear gas masks?
  • Do we wear full body gas suits?
  • Do we keep away from the people outside?
  • Do we dialyze in a bubble?
  • Do we eleminate all poultry stock?
  • Do we have home patients let other patients dialyze on your machine?

Any other suggestions?[/B]

P.S. Did any of you see “Inconvenient Truth?”…does it ring a bell?

[/quote]

[quote=Gus;11898] So what are the questions that concern you the most?

  • Do we wear gas masks?
  • Do we wear full body gas suits?
  • Do we keep away from the people outside?
  • Do we dialyze in a bubble?
  • Do we eleminate all poultry stock?
  • Do we have home patients let other patients dialyze on your machine?

Any other suggestions? [/quote]

No. You have or should have a plan for an earthquake. Other areas of the country have plans for things that are likely happen there. That is great but we need different plans to cope with something that would be happening everywhere at the same time and offers unique challenges.

As I’ve written an important strategy would be to conserve resources and to increase your supplies. The question is: when would you start to conserve and how would you develop and maintain your supply cushion?

There are a number of issues that have unidentified policy solutions - just words and agreements but they would be a powerful help. The thing that we first need to understand is that this is different and that it will happen someday. If it’s ten years it will be less of a problem, if it happens in two years it will require careful planning.

http://www.informaworld.com/smpp/content~content=a768149644~db=all~order=page

Why is the world so poorly prepared for a pandemic of hypervirulent avian influenza?

[quote=Unregistered;11927]http://www.informaworld.com/smpp/content~content=a768149644~db=all~order=page

Why is the world so poorly prepared for a pandemic of hypervirulent avian influenza?[/quote]

Its way too complex for someone in our position as citizens to try do do something about but eventually just rely on our scholars, scientists to find a solution which am sure they’re working hard on, as we standby. Of course, the whole world is affected and what do we need to do? Be patient and wait for our scientists to come up with a solution. Its scary of course but we shouldn’t scare the heck out of the rest of the population. Are we trying to cause a panic attack or something?

Just to let everyone know, the Kidney Community Emergency Response Coalition that consists of patients, government, representatives of ESRD Networks, providers, and kidney organizations is working on a plan for emergencies, including a pandemic flu.
http://www.cms.hhs.gov/apps/media/press/release.asp?Counter=1910

I worry when pandemic planning is counted as just one of a range of disasters that could impact the provision of dialysis. It is not equivalent to a bigger hurricane.

But still the post stands. A pandemic under the CDC planning scenario would be lethal if you need incenter dialysis to live, and you wouldn’t need to catch it to be impacted. Home dialysis is about improved outcomes and home dialysis would in this case improve outcomes. Is that statement in doubt?

Apparently this risk has always been with us, we are no less prepared today then we were last year. There will be for the foreseeable future a risk of new pandemics but the news from Asia does focus the mind. I hope the individuals on this committee - who I believe all have other jobs and responsibilities - can improve preparation.

I’ll know this has happened when in addition to emergency diet plans all dialyzors are given a resource conservation schedule. I’ll feel better if it is explained to all dialyzors that under a resource conservation emergency runs will be lengthened and dialysis frequency will decrease.

Gus the http://www.pandemicflu.gov tells you that all US citizens should plan on being able to shelter in place for a week or two. But this advice is for urinators you need dialsis specific information which I find completely lacking.

Do you resupply for home dialysis when you are out of supplies? Always resupplying when you have two weeks of supply left would be smart.

Do you reorder you medications when you have just a month left? That would be smart.

Do include the elements of an emergency renal diet in your normal diet and then restock when you are down to a two week supply? Storing what you eat and eating what you store would be smart.

My Mom, who is a Christian Scientist BTW, pro’ly thinks I’ve been smoking crack. I am the only person she has ever met who is the least bit worried about bird flu. I have a friend who forbids the topic believing that I am becoming obsessed. I’m sure I’ve cashed some of whatever credibility I’ve accumulated online by trying to discuss this judging by the lack of engagement. And in meat-space people may well be wondering what is going on in hushed conversation. I do in fact hope I am wrong. But dialysis is the lens through which I view the world. And I do try to keep track of what is going on in the world. Look at H5N1 preperation planning through the lens of dialysis.

Read the news of the various clusters of human Bird Flu cases across Asia and now north Africa through the lens of dialysis. The news seems alarming, it does seem that this is coming - even the President used the term ‘grave’ to describe the situation when he was in Indonesia a couple of months ago.

I guess I could understand why there is a general reluctance to label the current situation as a Pandemic in Stage 4 or (more accurately) Stage 5, after all if the pain and suffering caused by a worldwide economic slowdown (shutdown?) and a disruption in trade/travel can be delayed, then it makes sense to delay even if it means a public display of denial. Plus you could be wrong, no one really knows and it could just go away. Do you really want to be someone like me asking for action only to be proven wrong? I really do hope I am wrong and have to be heckled by every one of you as we all grow into old age with bionic kidneys for all.

But is hope enough of a strategy to rely on? It has never been enough for me.

[QUOTE=Bill Peckham;11937]Read the news of the various clusters of human Bird Flu cases across Asia and now north Africa through the lens of dialysis. The news seems alarming, it does seem that this is coming - even the President used the term ‘grave’ to describe the situation when he was in Indonesia a couple of months ago.

…I really do hope I am wrong and have to be heckled by every one of you as we all grow into old age with bionic kidneys for all. But is hope enough of a strategy to rely on? It has never been enough for me.[/QUOTE]
I know we all really hope you’re wrong, Bill. :smiley: Unfortunately, bird flu jumping to humans is a predicted threat a lot like California falling into the Pacific after “the big one”. We all suspect it’s coming, but nobody really knows when, and some things seem too big to plan for. Worse, even when big things do happen with enough time to plan for them (oh, gee, I don’t know, like the dikes bursting in New Orleans because they weren’t built to withstand anything beyond a class 3 hurricane?!) we don’t do a great job.

The fact that the President is alarmed is…alarming. Nothing much seems to get through to him. I say go ahead and make noise and advocate for planning. It never hurts to have a plan in place, and if there’s more time than everyone thinks, the plan can be refined. But if I were a dialyzor, I’d sure want to be home, not in a center. They expect the flu, if it happens, to go through in waves each lasting a few weeks, during which there may be quarantines. So, getting dialysis supplies–and food stocked up would be key. If the army is keeping anyone from going out of their homes, for example, in-center hemo would be impossible. I can’t say that will happen, but I can’t say it won’t.

By the way, someone sent me a business book entitled Hope is Not a Strategy. So, you’re probably right about that…

Bill, Your message isn’t under appreciated or taken lightly. I just haven’t said much because I am still muling things over in my head as it hasn’t been something I thought much about until I read your post. I don’t know if I stay stocked well enough but I usually stock for an extra month just because in the winter our supplies can be delayed.

I could also guess that if a Pandemic ever happens I think we home users need to cut down on dialysis. For example, If I dialyze 6x a week for 3 hours then I may need to dialyze every two days for at least 4nours or even 3 x a week for at least 8 hours…that would give us leeway for longer use on our backups. If we have a backup of 2 weeks then we may double it by 2 weeks extra making it one month.

[quote=Gus;11946]I could also guess that if a Pandemic ever happens I think we home users need to cut down on dialysis. For example, If I dialyze 6x a week for 3 hours then I may need to dialyze every two days for at least 4nours or even 3 x a week for at least 8 hours…that would give us leeway for longer use on our backups. If we have a backup of 2 weeks then we may double it by 2 weeks extra making it one month.[/quote]Gus I believe that is the exact right strategy - a resource conservation strategy. The only thing I would add is that when you initiate the conservation strategy you should continue to order supplies as if you were consuming them at the previous rate.

This is important because I doubt that all 1,000+ NxStage dialyzors could order/receive an extra month of supplies on the same day. Conserving resources and not overly stressing the supply chain would both help tremendously.

Now the next question is at what news/event/announcement do you start a resource conservation strategy? This I think would be an apt role for CMS. For instance activating g-codes that encourage resource conservation would be a clear signal of the seriousness of the situation.

For instance if CMS could activate a resource conservation g-code that paid for three treatments per week while the unit provided just two treatments it would allow the unit to continue its ordering at its normal rate, building a supply cushion – if we were blessed with a period of time between identifying a pandemic and when it spread to an extent of interrupting supply delivery. Then if a pandemic wave spread across the US units could put aside CMS billing and use the supplies already reimbursed for by CMS.

Scenario:
6/09
The World Health Organization declares that H5N1 is spreading easily among humans in SE Asia.

CMS activates a supply conservation strategy

Incenter dialysis is cut back to 2x week with longer runs, but units order supplies at their normal three time a week rate.

Home dialyzors intiate similar resource conservation strategies.

10/09 After twelve weeks units have 6 weeks of supplies for 2x week schedules.

[quote=Bill Peckham;11949]Gus I believe that is the exact right strategy - a resource conservation strategy. The only thing I would add is that when you initiate the conservation strategy you should continue to order supplies as if you were consuming them at the previous rate.

This is important because I doubt that all 1,000+ NxStage dialyzors could order/receive an extra month of supplies on the same day. Conserving resources and not overly stressing the supply chain would both help tremendously.

Now the next question is at what news/event/announcement do you start a resource conservation strategy? This I think would be an apt role for CMS. For instance activating g-codes that encourage resource conservation would be a clear signal of the seriousness of the situation.

For instance if CMS could activate a resource conservation g-code that paid for three treatments per week while the unit provided just two treatments it would allow the unit to continue its ordering at its normal rate, building a supply cushion – if we were blessed with a period of time between identifying a pandemic and when it spread to an extent of interrupting supply delivery. Then if a pandemic wave spread across the US units could put aside CMS billing and use the supplies already reimbursed for by CMS.

Scenario:
6/09
The World Health Organization declares that H5N1 is spreading easily among humans in SE Asia.

CMS activates a supply conservation strategy

Incenter dialysis is cut back to 2x week with longer runs, but units order supplies at their normal three time a week rate.

Home dialyzors intiate similar resource conservation strategies.

10/09 After twelve weeks units have 6 weeks of supplies for 2x week schedules.[/quote]

There’s one problem I can think of, some patients at home have very little storage…while others have 2 months worth of storage, but maybe they can serve as a co-op share among other patients close each other…

I wouldn’t want to store my food cushion at the neighbor’s house but the dialysate? Just tell them the fluid has to do with urine, they’ll leave it alone.

Gus I think if you had to you’d have to make room. The NxStage presents a different set of resource decisions I think then the PHD. I’ll have to think about this but would you vary dialysate quantities or I guess just divide total amont of dialysate by number of blood tubing sets and that’s how much dialysate per run.

[quote=Bill Peckham;11960]I wouldn’t want to store my food cushion at the neighbor’s house but the dialysate? Just tell them the fluid has to do with urine, they’ll leave it alone.

[/quote]

Hahaha, I’d just its brine stock for beef jerky and poultry…hehehe

This has been a helpful discussion Gus. I’ve been thinking about prep from the point of view of a NxStage dialyzor. Storage would be an issue, especially if you’re using bags, so one strategy would be to store and rotate through additional blood lines. If you normally use 20L per treatment let’s imagine you have 120L available but with the extra blood tubing sets instead of 6 20L runs you could do 12 10L runs or 9 15L runs. Off hand I think the added frequency even at the expense of quality would be an advantage.

This is why discussing a resource conservation strategy openly, ahead of time makes sense. As we continue to collaboratively noodle strategy we can identify how in our situation we can increase our options. For instance how would being on the PureFlow change the calculus?

Back to someone using 20L/treatment I think you’d want an even greater cushion of blood tubing cartridges - it may be best to go to 60L/8 hour runs every third day. Another option for us to evaluate, so we’ve at least thought about it. I know this is a tough thing to think about but together we can find some answers.

The temptation is to consider pandemic planning off topic and lump it in with all the other Serious Medical Conditions out there but this isn’t about the Serious Medical Condition - pandemic flu - so much as it is about being prepared for something that would require thoughtful strategies. By taking the topic seriously we can come up with sensible habits that will improve our preparedness. CKD5 or not, we have an adult, civic responsibility to be prepared.

[quote=Bill Peckham;11969]This has been a helpful discussion Gus. I’ve been thinking about prep from the point of view of a NxStage dialyzor. Storage would be an issue, especially if you’re using bags, so one strategy would be to store and rotate through additional blood lines. If you normally use 20L per treatment let’s imagine you have 120L available but with the extra blood tubing sets instead of 6 20L runs you could do 12 10L runs or 9 15L runs. Off hand I think the added frequency even at the expense of quality would be an advantage.

Oh yes, its highly flexible, well for those of us at home. I mean c’mon we have the oprion to dialyze longer, so if any Pandemic ever occurs we will be able to to conserve by dialyzing less days but longer times. On the contrary, I don’t think that will really keep us away from the virus 100%…we will still have contact to people around us and we will never know whether they are infected or not.

This is why discussing a resource conservation strategy openly, ahead of time makes sense. As we continue to collaboratively noodle strategy we can identify how in our situation we can increase our options. For instance how would being on the PureFlow change the calculus?

I think its not complex at all, basicly same principles. If the the PureFlow SL is beeing used 6x a week then it can be cut down to every 2 day use, but just dialyzing longer.

Back to someone using 20L/treatment I think you’d want an even greater cushion of blood tubing cartridges - it may be best to go to 60L/8 hour runs every third day. Another option for us to evaluate, so we’ve at least thought about it. I know this is a tough thing to think about but together we can find some answers.

What may be dangerous is that a sudden change in time on machine may prove risky. Extra lab work is needed to see whether the extra time will not put us in danger. We may need extra supplements, vitamins or other needed medicines.

The temptation is to consider pandemic planning off topic and lump it in with all the other Serious Medical Conditions out there but this isn’t about the Serious Medical Condition - pandemic flu - so much as it is about being prepared for something that would require thoughtful strategies. By taking the topic seriously we can come up with sensible habits that will improve our preparedness. CKD5 or not, we have an adult, civic responsibility to be prepared.

Of course, we understand. Beeing alert ahead of time is good health.

[/quote]