Undiagnosed Human Rabies Deaths?

[Robin1]

Big news story today...A recent human death from rabies in Maryland has now been linked to a kidney transplant received a year and a half ago from a donor with undiagnosed rabies! According to CNN online article "CDC: Man Died of Rabies From Kidney Transplant," 3 other people who also received organs from that same donor are currently taking anti-rabies shots. And of course the search is on for family members or health care workers or anyone who might have had close contact with the donor or the recipients etc. Article also states that organ donors are not routinely tested for rabies, even if they show the signs! OMG! Please google and read the many articles that are available all over the news about this story for more details.
Disclaimer: I am in no way, shape, or form, a medical professional!!
That being said, I saw this coming a mile away...betcha it's happened more than we know...betcha people have died in general from undiagnosed rabies (of different origin) more than we know... betcha it could be happening now!
Please read my blog that I wrote last year entitled "Undiagnosed Human Rabies Deaths?" to see why this was so obvious to me, a non-medical professional, years ago...and why it most certainly should have been obvious to those in the medical field a long, long, long time ago.
http://bronxville.patch.com/blog_posts/undiagnosed-human-rabies-deaths
And I have tried multiple times over the years to alert my local County Department of Health to this very issue...long story involving all of the above, a rabid raccoon attack, feral cats...and more...to no avail.

 

[John Hewitt]

As I understand it, the rabies in question was raccoon rabies which has a much longer incubation period than the rabies with which we normally deal. I recall that there are a few cases a year from it. In any case, the donor organ came from a person who had undiagnosed rabies of this type. The donor must have been unknowingly infected but died of other causes and, since he or she was apparently healthy, the doctors went ahead and did the transplants. Then the virus showed up, a year after the transplant but, once the symptoms have appeared, rabies is untreatable and it was too late for this unfortunate patient.

Several people received other transplants from the same donor but they have now received the preventative rabies shots and should be OK.

 

[Skeptic Ginger]

Very few people are going to die of undiagnosed rabies. I believe with the kidney transplant patients, the donor died a traumatic death before the rabies was symptomatic. Organs from a person who died from either unknown causes or encephalitis would not be suitable for transplant.

This news account doesn't make sense.

As for the incubation period, let me look into that too.

 

[Robin1]

As I understand it, the rabies in question was raccoon rabies which has a much longer incubation period than the rabies with which we normally deal. I recall that there are a few cases a year from it. In any case, the donor organ came from a person who had undiagnosed rabies of this type. The donor must have been unknowingly infected but died of other causes and, since he or she was apparently healthy, the doctors went ahead and did the transplants. Then the virus showed up, a year after the transplant but, once the symptoms have appeared, rabies is untreatable and it was too late for this unfortunate patient.

Several people received other transplants from the same donor but they have now received the preventative rabies shots and should be OK.

If it is a raccoon strain of rabies couldn't that also mean that the person got it from an animal that was infected by a rabid raccoon? So the person could have gotten it from a dog, or cat, or bat etc. that was infected originally by the raccoon? Donor died in a medical facility with a diagnosis or encephalitis, I think. So doctors should have taken into consideration the possibility of all forms of encephalitis including rabies encephalitis!

 

[Skeptic Ginger]

In this case, for example, Investigation of Rabies Infections in Organ Donor and Transplant Recipients ---- Alabama, Arkansas, Oklahoma, and Texas, 2004, it was believed the encephalitis was caused by a subdural bleed.

It looks like the CDC doesn't yet have a full story out on the donor in this case.

CDC confirms rabies death in organ transplant recipient

In 2011, the donor became ill and was admitted to a healthcare facility in Florida and then died. ...

... All potential organ donors in the United States are screened and tested to identify if the donor might present an infectious risk. Organ procurement organizations are responsible for evaluating the suitability of each organ donor. Donor eligibility is determined through a series of questions posed to family and close contacts, a physical examination, and infectious disease testing, including HIV and hepatitis. There are typically one to three cases of human rabies diagnosed annually in the United States each year. If rabies is not clinically suspected, laboratory testing for rabies is not routinely performed, as it is difficult for doctors to confirm results in the short window of time they have to keep the organs viable for the recipient.

I sincerely doubt there are very many cases of missed rabies diagnoses here. If there were, one would expect to see more secondary infections in the health care workers who cared for these patients.

 

[Skeptic Ginger]

If it is a raccoon strain of rabies couldn't that also mean that the person got it from an animal that was infected by a rabid raccoon? So the person could have gotten it from a dog, or cat, or bat etc. that was infected originally by the raccoon? Donor died in a medical facility with a diagnosis or encephalitis, I think. So doctors should have taken into consideration the possibility of all forms of encephalitis including rabies encephalitis!

On the east coast raccoons account for most human rabies exposures, on the west coast it's bats. Feral cats are the next biggest reservoir people are exposed to. We do a better job vaccinating domestic pets, it's usually the stray kitten someone finds rather than Old Yeller.


It does happen that rabies goes undiagnosed in a patient, it's just very rare that it happens.

 

[Skeptic Ginger]

If it is a raccoon strain of rabies couldn't that also mean that the person got it from an animal that was infected by a rabid raccoon? So the person could have gotten it from a dog, or cat, or bat etc. that was infected originally by the raccoon? Donor died in a medical facility with a diagnosis or encephalitis, I think. So doctors should have taken into consideration the possibility of all forms of encephalitis including rabies encephalitis!

According to the CDC they did confirm rabies in the organ donor. They probably had stored tissues they then tested.

 

[Robin1]

According to the CDC they did confirm rabies in the organ donor. They probably had stored tissues they then tested.

Hi Skeptic Ginger, long time no see : ) Hope you are doing well. Anyway, yes, they did test stored tissue. But the very fact that the organ donor showed symptoms of encephalitis (which is often missed!) should have meant that he immediately be treated for all types of encephalitis (that can be treated) and tested for all types. Fact that he died of encephalitis in general with no specific type established, in and of itself, should have prevented him from being an organ donor. Should be common sense, especially to doctors , right? And don't even get me started on rabid stray kittens and feral cats!

 

[Skeptic Ginger]

Hi Skeptic Ginger, long time no see : ) Hope you are doing well. Anyway, yes, they did test stored tissue. But the very fact that the organ donor showed symptoms of encephalitis (which is often missed!) should have meant that he immediately be treated for all types of encephalitis (that can be treated) and tested for all types. Fact that he died of encephalitis in general with no specific type established, in and of itself, should have prevented him from being an organ donor. Should be common sense, especially to doctors , right? And don't even get me started on rabid stray kittens and feral cats!

You need to separate emotion from fact.

Do you know how many causes of encephalitis there are? I don't but I know it's a very large number.

In all medical diagnoses there are three issues relative to this discussion.

One, you just can't test for every possible cause ever known. That's not a practical method of diagnosis. It could mean spending a million dollars on every patient with a headache. Not to mention, tests have their own consequences. For example you might do a brain biopsy for some diagnoses. Do you really think we should do a brain biopsy for everyone with encephalitis?

Second, not every physician is as good as the next. It's unrealistic to expect every physician to get it right every time.

And third, the current model of considering a differential diagnosis to guide medical decisions works well most of the time.


You are concerned about something so rare it isn't worth the resources you suggest we apply to addressing it.

 

[Robin1]

You need to separate emotion from fact.

Do you know how many causes of encephalitis there are? I don't but I know it's a very large number.

In all medical diagnoses there are three issues relative to this discussion.

One, you just can't test for every possible cause ever known. That's not a practical method of diagnosis. It could mean spending a million dollars on every patient with a headache. Not to mention, tests have their own consequences. For example you might do a brain biopsy for some diagnoses. Do you really think we should do a brain biopsy for everyone with encephalitis?

Second, not every physician is as good as the next. It's unrealistic to expect every physician to get it right every time.

And third, the current model of considering a differential diagnosis to guide medical decisions works well most of the time.


You are concerned about something so rare it isn't worth the resources you suggest we apply to addressing it.

As far as I know, and I could be wrong...there are only 2 types of encephalitis that specific drugs can help "stop" the disease...herpes encephalitis and rabies encephalitis. Time is of the essence with both. If rabies symptoms have already manifested, from what I understand, you are too late for life-saving treatment (barring very rare cases). And even with those drugs and other treatments, if you survive, damage already done to the brain could be irreversible. Other types of encephalitis need immediate medical attention as well and constant monitoring but will run their course. Drugs can help with other types of encephalitis in terms of addressing symptoms etc. but not "stop" the disease for want of a better word. Encephalitis in all it's forms is serious and needs medical attention. The very fact that the doctors diagnosed the donor in this case with encephalitis and did not know the type should have eliminated him from a donor list. Common sense! Everyone says rabies encephalitis is so rare...but is it so rare only because it is so often going undiagnosed? Because I know from personal experience that even encephalitis in general can be easily missed. Imagine rabies encephalitis, especially considering that many initial rabies tests can turn up falsely negative as was the case with Maria Fareri.
Disclaimer again: I am not a medical professional!
I am just speaking from personal experience and research and most certainly could be wrong. I would love an expert on the subject to please weigh in!

 

[Skeptic Ginger]

As far as I know, and I could be wrong...there are only 2 types of encephalitis that specific drugs can help "stop" the disease...herpes encephalitis and rabies encephalitis.

Lots of things cause encephalitis and of the microorganisms, many are treatable, many are not.

Time is of the essence with both. If rabies symptoms have already manifested, from what I understand, you are too late for any treatment (barring very rare cases). And even with those drugs and other treatments, if you survive, damage already done to the brain could be irreversible.

AFAIK, there are now two known survivors of symptomatic rabies and the first girl is fully recovered. I don't know the status of the second but it's probably easy to check.

[snip] The very fact that the doctors diagnosed the donor in this case with encephalitis and did not know the type should have eliminated him from a donor list. Common sense!

I don't know the circumstances. News accounts aren't unreliable. You can't say what went wrong without more information. CDC will report more thoroughly on it soon.

Everyone says rabies encephalitis is so rare...but is it so rare only because it is so often going undiagnosed?

No. If it were missed you'd see heath care worker outbreaks from exposures.

Because I know from personal experience that even encephalitis in general can be easily missed.

Medicine is not perfect, obviously. Lots of diagnoses are missed. Rabies isn't likely one of them that is missed very often.

 

[John Hewitt]

No. If it were missed you'd see heath care worker outbreaks from exposures.

I'm not sure what point you are making here but, for the record, I do not think that health care workers are normally at risk from rabies, since the normal transmission mechanism involves teeth and most rabies patients don't bite their nurses.

Also, and for the record, I did not suggest that the donor died *of* undiagnosed rabies but *with* undiagnosed rabies. I do not know the actual or perceived cause of the donor's death but I presume that the doctors did not think that it involved any untreatable, infectious condition. This whole episode just seems to me an unfortunate event that could not have been prevented and in which nobody is to blame.

A more interesting, and possibly common, situation arises when a donor has been a smoker and when the recipient of the donor organ subsequently contracts cancer.

 

[WhatRoughBeast]

I'm not sure what point you are making here but, for the record, I do not think that health care workers are normally at risk from rabies, since the normal transmission mechanism involves teeth and most rabies patients don't bite their nurses.

From http://www.cdc.gov/rabies/transmission/index.html

The most common mode of rabies virus transmission is through the bite and virus-containing saliva of an infected host. Though transmission has been rarely documented via other routes such as contamination of mucous membranes (i.e., eyes, nose, mouth), aerosol transmission, and corneal and organ transplantations.

 

[Robin1]

On the east coast raccoons account for most human rabies exposures, on the west coast it's bats. Feral cats are the next biggest reservoir people are exposed to. We do a better job vaccinating domestic pets, it's usually the stray kitten someone finds rather than Old Yeller.


It does happen that rabies goes undiagnosed in a patient, it's just very rare that it happens.

One extremely rare case of actually surviving rabies was 8 year old Precious Reynolds who contracted rabies from a feral cat in a California schoolyard in 2011.

 

[John Hewitt]

From http://www.cdc.gov/rabies/transmission/index.html

Which is what I said. I do not understand what point you are seeking to make.

 

[Dogdoctor]

Yeah interesting since the one case means two new human cases were discovered. It seems to me even though rabies is rare it might behoove the medical community to check for rabies in encephalitis cases where the patient is an organ donor. The problem is likely that there isn't any reliable antemortem test and difinitive testing requires a chunk of brain tissue and the test takes a while to run so the transplant is done by the time the test is done.

 

[Skeptic Ginger]

I'm not sure what point you are making here but, for the record, I do not think that health care workers are normally at risk from rabies, since the normal transmission mechanism involves teeth and most rabies patients don't bite their nurses......

I've seen it first hand. The people who were around this girl before and during her illness were exposed to the child's saliva.

3. Who should pay for postexposure vaccination for persons who cannot or will not pay, especially if the medical need is dubious?
LCHD received a bill for $43,700 by the state health department for doses of rabies vaccine and rabies immune globulin. The local hospital paid for vaccine allocated of its employees [there were 30], but the day care center did not assume responsibility for the possible exposure of 52 children and eight adults. LCHD billed them enough to pay for the biologicals but not the staff time for assessing the need and giving the vaccine. In at least one other western state, public funds are not available to pay for postexposure prophylaxis for indigent persons.

Was such expense justified? The CDC Epidemic Intelligence Service officer who assisted with the case did not address this question directly, but stated the CDC position: human-to-human transmission of rabies has never been documented, except by corneal transplant. Parents probably perceived the risk as being many thousand-fold the most pessimistic risk that an epidemiologist would estimate, and their expectations and actions were based on their perceptions, not a statement by government employee. The case also provoked internal debate about appropriate use of the media, worker safety, management of pets and stock animals exposed to bats, and the relationship of the health department to animal control agencies. Without the experience of this single case of a rare disease, the LCHD probably would not have grappled with this host of difficult issues that portend to affect our operations for the foreseeable future.

While no nosocomial cases have been documented, at least 30 employees at COH were careless around the child's saliva, especially during intubation and managing her airway.


It needs to be pointed out, the parents only found a bat in the child's bedroom. No one believes she was actually bitten. Very sick patients are sometimes messy. There can be more than a bit of saliva flying around when you have a child in respiratory arrest and people are trying to get a tube in her tiny airway.

 

[Skeptic Ginger]

Yeah interesting since the one case means two new human cases were discovered. It seems to me even though rabies is rare it might behoove the medical community to check for rabies in encephalitis cases where the patient is an organ donor. The problem is likely that there isn't any reliable antemortem test and difinitive testing requires a chunk of brain tissue and the test takes a while to run so the transplant is done by the time the test is done.

So for a couple million organ donors you would test them all for rabies that is so unlikely? There are many other tests we don't do on organ donors which would probably find more cases.

That's just not how it works and how it works is very successful. In order to be more perfect, so not a single case of anything was ever transmitted, the cost of transplanted organs would be so high, many fewer people would receive organs.

In order to save 10, you'd be killing thousands.

Again, we don't know the details of the case until we see the CDC investigation report.

This could be one doctor making a stupid mistake. You cannot test your way out of human error.

 

[Robin1]

Yeah interesting since the one case means two new human cases were discovered. It seems to me even though rabies is rare it might behoove the medical community to check for rabies in encephalitis cases where the patient is an organ donor. The problem is likely that there isn't any reliable antemortem test and difinitive testing requires a chunk of brain tissue and the test takes a while to run so the transplant is done by the time the test is done.

Sounds absolutely insane to me that a patient can be diagnosed with encephalitis of unknown origin AND be exhibiting possible symptoms of rabies yet doctors will still let his organs be donated!! I mean, DUH!!!!!!!!!!!!!!!!!!!
I don't think organs in those circumstances should be donated at all but at the very, very least how about letting possible organ recipients know the situation before transplant and immediately start anti-rabies shots on them if they give the OK. Also perform rabies test on other donor tissue asap....that way organs are saved and transplanted yet still a definitive answer to the rabies question will be available after the fact. And the need for future treatment will be able to be accurately assessed. Sounds to me like doctors are not even sure in this case that the other 3 recipients ( who aren't exhibiting rabies symptons yet) will not develop rabies even with the anti-rabies shots. One article I read said case is so unusual doctors won't even take a guess about percent chance they think treatment will work. Another article said doctors think there is a "good" chance it will work.

 

[Dogdoctor]

So for a couple million organ donors you would test them all for rabies that is so unlikely? There are many other tests we don't do on organ donors which would probably find more cases.

That's just not how it works and how it works is very successful. In order to be more perfect, so not a single case of anything was ever transmitted, the cost of transplanted organs would be so high, many fewer people would receive organs.

In order to save 10, you'd be killing thousands.

Again, we don't know the details of the case until we see the CDC investigation report.

This could be one doctor making a stupid mistake. You cannot test your way out of human error.

Lets figure out exactly how many cases of encephalitis from an undiagnosed cause end up being donors before we mention numbers like a couple million.