Pandemic: impact on dialyzors

[Bill Peckham]

There is a benefit of home therapies that we’ve never talked about. I’ve been a bit hesitant to bring it up because when you consider the worst case scenario … well the worst case scenario is very bad. Very, very bad. I go back and forth on how likely it is ... and for this year or next year the chances are low. However, if you talk about the chance of a pandemic happening over a span of time - in the next 20 years - then I think you have to consider the risks. So yes I’ve been thinking about the implications of a pandemic – bird flu or something else.

A pandemic would be very bad for people on dialysis. Extremely bad. Many of us have compromised immune systems which magnifies the clinical risk of getting sick but more than that incenter dialysis populations are vulnerable in a logistical sense, not just a clinical sense. Incenter dialyzors have to congregate three times a week. We rely on a functioning supply chain. We rely on the commitment of care givers.

Based on scenarios being discussed there may be periods - a week or weeks – when people will be afraid. Patients and staff afraid to go to dialysis units. For everyone from transporters to delivery personnel (people who bring us all of the supplies) fear may disrupt their willingness to work.

It is almost unimaginable. But as vulnerable as dialyzors are, we can be less vulnerable by thinking and talking about what responses we could offer. I think we'll be better off if we consider the worst now, while we have time to prepare.

What could we do? I think we’d have to talk about switching people in mass to PD – how could that be done? At some point you’d have to think about inducing diarrhea to create a bridge over a short interruption in service. Are there other ways to create bridges over short term disruptions?

I have a beef with a lot of the reporting on the potential for a pandemic. It is hard to get a solid idea of the probabilities of a worse case scenario. Should we give it 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?

One thing I think we can say is that people on home therapies are in a better position to make it through either a pandemic of flu or a pandemic of fear. If either fear or flu becomes widespread incenter dialyzors will be vulnerable. A concrete thing we can all do is make sure dialyzors are on the radar screen of groups planning for a pandemic. Now would be a good time for each of us in our own communities, to write pandemic work groups, task forces and other local planning efforts ask them to make sure dialyzors are on the list of things to think about.

[Beth Witten MSW ACSW]

The last pandemic occurred in 1968 with the Hong Kong flu. I had that flu for a week. I also had the Asian flu in 1957, but that one lasted 2 weeks. These were the last two pandemics. Gee...now I wonder if I'll get the next one since I've had the other big ones.

We didn't call it a pandemic at the time...we called it a bad flu season. I don't remember people being so terrified about it as they have become this time around. Will bird flu be the pandemic everyone is bracing for? No one knows. People who are immunosuppressed definitely need to be aware of the need to avoid sick people and crowds. This would be even more important with transplant recipients than those on dialysis. And home dialysis is one sure way to limit exposure to people that might be sick. However, unless you quarantine your home never letting anyone in or out, there is no way to totally avoid the risk of becoming infected. The best thing we can do is learn all we can to limit the exposure.

Here's information from the Forum of ESRD Networks to help us prepare for a future pandemic:
http://www.esrdnetworks.org/pandemicflu.htm

Here's information for healthcare professionals on the CDC website about how to prepare for a pandemic. Under tools there's a program to see what would happen if we have a pandemic like 1968 or like 1918.
http://www.cdc.gov/flu/pandemic/healthprofessional.htm

[Pierre]

I remember the 1968 Hong Kong flu. It didn't seem like a pandemic at the time though, when actually living through it.

Some of you in the U.S. might not remember the SARS scare a couple of years ago, in which a number of people in Toronto died. Ottawa is a few hours drive from Toronto, and all the hospitals here had to take special precautions. I was dialyzing in-centre at the time, and it gave us a bit of a preview of what might happen if a flu pandemic ever comes. Hospitals only left designated entrances open, and these were guarded. We had to disinfect our hands at the entrance of the hospital and sign a form each time on which we had to check yes or no to a number of health-related questions, before we were allowed into the hospital. I imagine the precautions would have been even tighter in Toronto itself. With the infection control procedures in place, I think I had less chance of catching anything at the dialysis centre than at any mall or other public place.

Pierre

[Bill Peckham]

I agree that dialyzors are clinically vulnerable, as is everyone and people who are immune suppressed are at increased risk but beyond that my concern is that dialyzors are at increased risk logistically. Pierre when SARS was making headlines I heard that truck drivers – deliverymen - were afraid to deliver to the hospital, even though there was no real risk.

What would people’s reaction be if there was a slight risk in carrying out their job? If taxi drivers had an increased risk or wheelchair van drivers had a slightly increased risk would those people still come to work? My concern is the impact fear would have on the provision of dialysis. I worry dialyzors would be at increased risk from a lack of regular dialysis rather than the actual pandemic disease. In military terms I think incenter dialyzors have a longer logistical tail than home dialyzors, that’s why I think home dialyzors are less vulnerable.

It was reported that here in the US in the aftermath of hurricane Katrina fuel was diverted from dialysis units running on generators to nursing homes. The reason was that dialysis units and the needs of dialyzors were not part of the pre-event planning. There is a lot of disaster planning going on right now so something we can do is remind people to include dialyzors in disaster planning.

The provision of dialysis should be identified as a critical service.

[Pierre]

The point about delivery systems, etc. breaking down is a good one. I don't know if I would be less vulnerable to that as a home dialyzer though. After all, I am quite dependent on my monthly supply deliveries, on the ready availability of service, etc. In Canada, it's more common for dialysis to be done at hospitals. In the U.S., the reverse seems to be true, in that standalone dialysis clinics are everywhere. I don't know how that would play out.

If there was a huge, really generalized pandemic, I suspect many of the things our civilization depends on might start breaking down. But on the other hand, maybe the fear is exaggerated. Like I said, I lived through the Hong Kong flu of 1968. I was 15 at the time, and I don't remember anything breaking down. Now, if the next one is more like the Spanish flu of 1918, we could all be in some serious trouble.

Frankly, and please understand this has nothing to do with nationalism, but I think the handling of dialysis patients before, during and after the Hurricane Katrina disaster was nothing short of disgraceful. I'm sure there were many deaths among dialysis patients which we don't even know about. This is something which I hope the authorities have learned a lesson from. In an emergency, hemodialysis patients should not be expected to find their way on their own to some unknown dialysis centres hundreds of miles away in other states.

Pierre

[Bill Peckham]

Actually with regard to the hurricanes, particularly Katrina and New Orleans dialysis patients: while the Federal Government preformed poorly, the US renal community did a commendable job. Because dialysis patients are among the first to evacuate there were few left along the coast during the hurricanes – for some, dialysis may have saved their lives in the sense that they evacuated because they knew the dialysis units would be closed post storm. The bizarre nature of the US reimbursement system could have created problems for people displaced by the storm but the US renal industry stepped up and met the need of patients where they found them – there were no reports of red tape baring access to dialysis.

In the event of an event, I think home dialysis offers a clear advantage if only because we can back up in center but incenter dialyzors can not back up at home. Options are always an advantage. However, after a moment of reflection I think it is clear that if there was a pandemic dialyzing at home would be way preferable to going incenter. And while we do rely on delivery services for our supplies we are less vulnerable than a dialysis unit to service interruptions.

With the provision of dialysis we can not afford to be reactive – a one or two week disruption of service is unacceptable. Involving ourselves in contingency planning now gives us a chance to be proactive. Existing response plans assume that the public should be able to maintain themselves for a week or two. That’s not going to work for the incenter dialyzor population.

[Gus]

You know something, if it were ever to happen I think a portable dialsysis machine that does not need horendous resources to operate could really save many esrd patients in such a disaster.........

In my case scenario, if I were to evacuate my area........well, I just pack my NxStage into my trunk of the car and head to safe zone.......call NxStage where am on my new location......

If it were a terrible pandamic virus, well, GOD knows but that's worser.....couldn't predict what we would do on that kinda problem..

[Dori Schatell]

The reason that "bird flu" is feared as the next possible pandemic is that scientists believe that the 1918 flu epidemic was a bird flu that jumped to humans. With a kill rate of 10% (inexplicably mostly healthy young people, not the very old and very young, as was typical), the "Spanish flu" of 1918 killed an estimated 20-40 million people worldwide. This was before the days of rapid air travel, shopping malls, etc.

Today's bird flu--IF it jumped to people--is believed to have a kill rate of 50%. (Not sure why the rate would be any higher than it was in 1918, though). So far, a number of people have caught it directly from birds, and it seems to be jumping species from birds to small animals (e.g., cats), but it has only rarely jumped from birds to humans, and human-to-human transmission is very rare.

In an epidemiological sense, the most dangerous sort of bug is one that has a high kill rate and is spread via the respiratory route. Think about the Ebola virus: it's lethal (~90+% kill rate), but you have to have direct person-to-person contact to catch it. You can't pick it up from a sneeze. This is why the bird flu has attracted so much attention--particularly now that it is so common for large numbers of people to gather together or to share the same air space (e.g., in an airplane).

The probable good news is that they've identified the virus (H5N1), and they're working on a vaccine. Per the CDC, they started testing the vaccine a year ago in April. (They're even working on one for H5N2, just to be safe). http://www.cdc.gov. There is also work to create a rapid-response test so healthcare professionals will be able to diagnose it quickly.

The real question is whether the virus will make a widespread human-to-human, respiratory spread, jump before it is possible to make and distribute enough vaccine. No-one can answer this question yet, which is why it's prudent to take some steps to protect yourself--whether or not you're a dialyzor. But remember the whole freak-out over Y2K? It never happened. If the flu heads here, there'll be time to make preparations. In the meantime, it may be best to keep your eyes and ears open and think about what you'd do if the need arose.

In our local paper, the prediction was that if the flu hits (and there is no useful vaccine), it will pass in a series of "waves," each lasting a few weeks. So, there might be quarantine periods during which only essential workers could go out (I'd think delivery of medical equipment, like healthcare itself, would be considered essential), and they'd probably wear surgical masks and gloves to protect themselves.

If services broke down (e.g., no grocery stores, gas stations, or power plants were operating--which seems unlikely), it would be important to have several weeks worth of bottled water and food that doesn't require cooking. Of course, living in the Midwest as I do, I gotta tell you that if power was shut off in the winter, the cold would get us long before the flu did! If you're on home dialysis, you'd want to have a month's worth of supplies--maybe 2--which isn't too much beyond what you'd have on hand anyway. If you're on in-center dialysis, the centers would likely still be open, but you'd run a much higher risk of being exposed.

I think it's highly likely that a useful vaccine will be developed before a widespread pandemic occurs. With global surveillance and much better public health systems in place than ever before in history, we should be able to head this off at the pass if there's enough time. So, don't panic--but you might want to pick up a few extra things at each grocery trip so you build up some food stores just in case.

[Bill Peckham]

... don't panic--but you might want to pick up a few extra things at each grocery trip so you build up some food stores just in case.

I in no way want to suggest that it is time to panic. However, I would suggest that this is another reason to dialyze at home. Under any scenario getting dialysis will be harder than getting food.

[Briar]

Many Health Care Workers Won't Show Up in Flu Pandemic By Steven Reinberg
HealthDay Reporter

TUESDAY, April 18 (HealthDay News) -- With many Americans worried about their safety should a flu pandemic occur, there's little reassurance from a survey that finds that close to half of U.S. public health-care workers would not show up for work if such a pandemic occurred.

In fact, two-thirds of the 308 employees polled said their work would put them at risk of contracting the potentially deadly flu should an outbreak come to pass.

"Forty-two percent of the health care workers surveyed said they would not respond in the event of a flu pandemic," said study co-author Dr. Daniel J. Barnett, an instructor at the Johns Hopkins University Center for Public Health Preparedness in Baltimore.

"The most important factor, in terms of showing up for work, was how much the individual employee perceived his or her role [to be] in the agency's response," he added. The less important an employee thought his or her role was, the less likely they were to report for work, Barrett said.

Just 40 percent of the employees felt that they would be asked to show up should a pandemic become a reality.

In addition, only 33 percent thought they were knowledgeable about the health impact of pandemic flu, Barnett said.

The survey was conducted between March 2005-July 2005 and involved employees of three Maryland county health departments. The findings appear in the April issue of the journal BMC Public Health.

The willingness to report for work was lowest among technical and support staff, Barnett said. These include computer data entry staff, clerical workers and receptionists. "In many cases, these are some of the people who will be on the frontline interfacing with the public," he noted.

The implication of these findings is that more training of health care workers is needed. "We need to do a better job of training the public health workforce," Barnett said. "Not just in ability to respond, but in willingness to respond," he added.

"We need to focus on giving each worker a better sense of the pandemic scenario and the importance of his or her personal role in responding to it as a health department employee," Barnett said. "In addition, we need to give workers confidence that the agencies will give them adequate personal protective equipment."

Barnett assumes that these findings would be the same throughout the United States. "The health departments we surveyed are consistent with a vast majority of health departments in the country," he said.

The public should be concerned with these findings, Barnett said, since the system can't function during a pandemic if many of the key health care workers don't show up. "This is a wake-up call of preparedness training to address willingness to respond," he said.

One expert is not surprised by these findings.

"Reluctance to report to work in a variety of settings will probably be an issue during a pandemic," said Dr. John Treanor, a professor of medicine, microbiology and immunology at the University of Rochester, N.Y. "It makes sense that if someone does not believe that they play an important role in whatever organization they work for, they are less likely to brave risks and hardship to go to work."

Education will be an important component of pandemic planning, Treanor said. "I would be interested to know the extent to which this would be impacted if the employees believed that they would receive an effective preventative, whether that was a drug or vaccine or something else, that would reduce or eliminate their personal risk," he said.

Another expert doesn't think these findings can predict the actual response during an actual crisis.

"The findings are potentially misleading because anticipating one's response to a genuine crisis is difficult," said Dr. David L. Katz, an associate professor of public health and director of the Prevention Research Center at Yale University School of Medicine.

"Completing a survey about hypothetical scenarios evokes none of the emotional intensity of a true crisis," he said. "Stating you might resist the call to duty in the advent of such a crisis does not induce the conflict or cognitive dissonance of actually doing so," he said.

However, he said, the findings should not be ignored.

"The findings are worrisome, though, because they suggest that the legions of public health workers around the country do not feel sufficiently informed about the threat of pandemic avian flu to respond to its arrival with confidence," Katz said. "Health departments can and should develop clear and coordinated response plans, and raise the prevailing level of flu knowledge among staff."