Friday, August 26, 2005

Sadly, it was only a matter of time: An autistic boy dies during chelation therapy

I started my vacation out with a bit of a bummer of a thought. Unfortunately, it looks as though I'm going to close it with an even bigger bummer. I hadn't planned this. My original plan for today was either to take the day off and post nothing at all (the comment spam issue took care of that) or to post something brief, light, and fluffy, maybe doing the same on Saturday and/or Sunday, using a couple of amusing things I witnessed while traveling the Midwest (other than the Derek Jeter incident, of course). I would then resume regular topics on Monday when, unfortunately, I have to return to work, do clinic, and be on call.

However, this story, e-mailed to me by more than one person, compelled me to do change my plan:
A 5-year-old autistic boy died Tuesday in a Butler County doctor's office while undergoing an increasingly popular though controversial medical treatment touted by some as a cure for the lifelong neurological and developmental disorder.

Abubakar Tariq Nadama died while receiving chelation therapy, an intravenous injection of a synthetic amino acid that latches onto heavy metals and is then passed in the urine.

State police at Butler are investigating Nadama's death, which occurred at about 10:50 a.m. Tuesday in the office of Dr. Roy Eugene Kerry in Portersville.

Authorities said Kerry's office reported that the child was receiving an IV treatment for lead poisoning when he went into cardiac arrest.
An update to this story can be found here. My heart goes out to these parents, who no doubt thought that they were doing something positive for their child. Unfortunately for Abubakar and them, they found out in the hardest way possible that they were not.

Now, I realize that I'm a couple of days late commenting on this topic. I even wondered whether I have anything left to say that hasn't already been said. Indeed, Prometheus, Kev (1, 2, 3), Autism Diva, and numerous others have already commented ably on the story. Given that I've written before about chelation therapy as used to treat atherosclerotic heart and peripheral vascular disease in adults, how randomized double-blind studies have shown it to be no better a treatment than placebo, and how there is not a single study showing that it decreases the size of atherosclerotic plaques or improves blood flow through diseased vessels, I thought I should add my 2 cents.

Sadly, since learning of chelation therapy being used to "treat" autistic children, I've feared that it was only a matter of time before a child died during therapy, and now it has happened. It was inevitable, given that more and more parents of autistics, desperate to do anything to help their children, are opting for this unproven and ineffective therapy. Unfortunately, they usually do so on the basis of incomplete or erroneous information promoted by various organizations like Generation Rescue, whose literature states quite bluntly that "childhood neurological disorders such as autism, Asperger's, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning" (which also makes it puzzling why it is being reported that Dr. Kerry was treating the child for "lead poisoning," given that even the thimerosal/autism advocates don't generally argue that lead causes autism). If you accept that premise that mercury exposure during infancy causes autism, then chelation therapy sounds reasonable. However, even if that premise were true, one has to remember that brain damage is usually permanent and it is hard to propose a plausible biological mechanism by which removing mercury months or even years later would improve neuronal function.

The purpose of chelation is to bind ("chelate") heavy metals with a molecule that allows them to be secreted more rapidly in the urine. EDTA is fairly avid at chelating calcium ions, and that was the original rationale for the use of EDTA in "dissolving" calcified atherosclerotic plaques by "leeching" the calcium out of them. Given that children tend to develop electrolyte imbalances more easily than adults and to be more sensitive to them, utilizing a therapy designed to chelate electrolytes is not something to be undertaken lightly in children. What most likely happened in Abubakar's case is that he suffered a fatal arrhythmia due to hypocalcemia brought on by chelation of the calcium ions in his bloodstream. It may be possible that he died of another cause and that the timing of his death was merely a coincidence, but that would have to be a hell of a coincidence, given how rare it is for an otherwise healthy 5 year old boy to drop dead suddenly from a cardiac arrest.

I'm not going to get into the issue of whether or not mercury in the thimerosal used to preserve childhood vaccines has a role in the pathogenesis of autism yet again. My position on this issue should be abundantly clear to anyone who's read my blog regularly over the last few months, and, if it isn't, you can always check out some of my older articles (1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16). Suffice it to say that the preponderance of evidence presently existing does not support a role for exposure to mercury as a major cause of autism in the vast majority of cases. Mercury may be a neurotoxin, but overwhelming evidence fails to support a role for it in the pathogenesis of autism. Given that the mercury hypothesis represents a biologically implausible explanation for the pathogenesis of autism, any therapy based on "removing" mercury is likely doomed from the start to be ineffective, and any doctor who administers such a treatment for autism (in this case, Dr. Roy Eugene Kerry) should be considered guilty of negligence at best and malpractice at worst.

For the sake of argument however, let's play Devil's advocate for a moment and discuss this tragic case operating under the assumption that mercury does play a major role in the pathogenesis of autism. Even in that case, if the child's death can be shown to be due to electrolyte imbalances caused by chelation therapy, this doctor still should be considered guilty of unethical conduct at best and malpractice at worst. Why? First, as has been pointed out, in physiologic conditions in the body EDTA is a relatively weak chelator of mercury ions compared to the -SH group-containing proteins in the body's tissues. This means that, at equilibrium, mercury ions will remain preferentially bound to -SH group-containing tissue proteins in the body and EDTA will not be effective at competing for binding mercury. Effective mercury chelators contain -SH groups and have higher affinity for mercury than body tissues. Examples include compounds such as 2,3-dimercaptosuccinic acid (DMSA) and 2,3-dimercaptopropane-1-sulfonate (DMPS). In comparison, EDTA is a poor choice as a therapeutic agent to remove mercury from the body, even though in the test tube it binds mercury more avidly than calcium. (Perhaps this is one reason why Dr. Kerry was reported to have claimed to investigators that he was treating the child for "lead poisoning," for which EDTA is approved). In contrast, EDTA is a strong chelator of calcium and magnesium ions, which is why dangerous hypocalcemia is a risk when using EDTA intravenously. Similarly, EDTA chelation therapy can also lead to kidney failure, anticoagulation resulting in bleeding, vasculitis, autoimmune reactions, and depletion of serum zinc ions (which EDTA binds more strongly than calcium or magnesium), leading to compromise of the immune system. Anyone administering chelation therapy in an office not connected to a hospital needs to be prepared to deal with immediately life-threatening complications like cardiac arrhythmias right then and there, because there won't be time to get the patient to a hospital in time to save his life if such complications ensue. At minimum, this would require a fully stocked crash cart and personnel well trained in ACLS and (if treating children) PALS. If Dr. Kerry did not have these resources available, plus cardiac monitoring equipment, it would have been quite reckless of him to be administering intravenous chelation therapy in his office.

Because there are no good studies that demonstrate its efficacy in treating autism, chelation therapy for this purpose should be considered at best an experimental therapy (at worst it is a completely ineffective therapy). As such, chelation is not and cannot be considered the standard of care. Also, it is generally considered dubious at best and unethical or even malpractice at worst to administer unproven experimental therapies outside the context of properly designed and conducted clinical trials, which brings up the issue of informed consent. Did Dr. Kerry tell the parents the truth of the situation, which is that there is no evidence from even minimally controlled trials that chelation therapy does any good whatsoever for autism and that, in addition, intravenous chelation therapy has the risks of dangerous electrolyte imbalances, sometimes fatal cardiac arrhythmias, kidney failure, etc.? It is impossible to say with the information available, but my guess is that, like most altie doctors, Dr. Kerry probably played up the perceived "benefits" of chelation therapy for autism on the basis of almost zero supporting scientific or clinical data and understated its risks. If there is a lawsuit (as there should be if chelation did kill Abubakar), this issue will become very important. Another issue that will become important is that Dr. Kerry is apparently an otolaryngologist, not a pediatrician or a pediatric psychiatrist. What's an Ear, Nose, and Throat doctor who also claims to specialize in allergies doing administering chelation therapy for autism? Where and how did he learn to administer it safely? What are his qualifications to be treating "lead poisoning" or autism? Or did he just start doing it on his own? (I note that the University of Pittsburgh has apparently removed Dr. Kerry from its website; however, the cached page can be found here.)

But, say chelation advocates, no one has died from chelation therapy in decades until now. Well, that's not entirely true. Nonetheless, reply chelation advocates, the risk of death is very small when chelation is properly administered. Maybe so, but it still comes down to a risk-benefit ratio. In the case of serious and often fatal diseases such as cancer, we accept a higher level of risk of treatment-related complications, such as immunosuppression from chemotherapy, and a lower chance of success, because the consequence of no treatment is death. In contrast, in the case of a condition such as autism, where quite a few children improve over time to lead normal or near-normal lives without such interventions as chelation therapy, even a very small risk of death is unacceptable. This is even more true when the treatment risk being taken is due to a therapy whose efficacy is dubious at best, that is likely completely ineffective, and whose premise is not even based on sound science, as is the case for chelation therapy for autism.

Before I leave you temporarily for the last weekend of my vacation, please consider two things. First, one of the hallmarks of quackery is seen when a single therapy is touted as the remedy for a wide variety of diseases of unrelated pathogenesis. For anything other than documented cases of heavy metal or iron poisoning, chelation therapy definitely fits that description. Indeed, chelation is touted as a treatment for atherosclerotic coronary artery and peripheral vascular disease, autism, Alzheimer's disease, kidney stones, diabetes, osteoporosis, skin ulcers, multiple sclerosis, psoriasis, muscular dystrophy, arthritis, poor memory, and even cancer. Ask yourself: How can one simple treatment possibly work for such a wide variety of diseases of vastly differing causes? Is it reasonable to believe that it can? No, it is not. Second, in these cases the question comes up about whether the doctor administering the therapy is a huckster. I have no information on which to base an opinion in this case. However, in most cases I have encountered, the doctor is usually a true believer in the quack therapy he or she is advocating. More than likely, Dr. Kerry genuinely believes in chelation therapy for autism, regardless of the paucity of evidence that mercury causes autism or that chelation therapy makes autistics more "normal." It's easy to lose one's objectivity as a physician when one deals with conditions or diseases that do not have good "conventional" treatments. As has been pointed out by Gregory L. Smith, the very reason medicine has come to insist on evidence-based approaches to evaluating treatments through randomized clinical trials is not because doctors and scientists are wiser than the general population, but rather because they are human and can be just as easily deceived (or just as easily deceive themselves) into believing in a treatment they desperately want to be efficacious. Even so, that does not excuse Dr. Kerry, nor should it stop the State of Pennsylvania from taking immediate action to strip him of his medical license or the parents from suing him for malpractice if the autopsy results demonstrate that Abubakar's death was indeed caused by chelation therapy.

Sadly, such an outcome seems unlikely at present:
The boy's mother, Marwa Nadama, said she did not blame the therapy, but was waiting for results of an autopsy.
I, too, will be awaiting the results of Abubakar's autopsy and may have more to say once it is reported.

ADDENDUM: A followup post can be found here.

ADDENDUM #2: On January 5, 2006, the autopsy results were announced, and the coroner concluded that EDTA chelation killed Tariq.

19 example(s) of insolence returned:


At 8/26/2005 4:15 PM, Anonymous Dianne said...

I have a vague memory of seeing a case report in which chelation was used as a treatment for actual, definite mercury poisoning in a woman who was a lab tech exposed to (I think) methyl-mercury at work. Although chelation is considered a more or less standard therapy for heavy metal poisoning, it failed because she was not treated soon enough--and she sought treatment within weeks of her exposure. So, even supposing that mercury in vaccines or from any other source is responsible for autism and one had an appropriate chelator available, how likely is it that chelation months to years after the exposure is going to help?

 

At 8/26/2005 5:48 PM, Anonymous chaperonin60 said...

I even wondered whether I have anything left to say that hasn't already been said.

Yes, but your comments are always interesting - thanks for adding to the ongoing discussion.

 

At 8/26/2005 5:57 PM, Anonymous Xerxes1729 said...

Dianne - that's what the AMA says chelation is for - treating heavy metal poisoning.

 

At 8/26/2005 6:39 PM, Anonymous altunarail said...

Apparently, Dr Gary Gordon is also on the chelation for autism bandwagon (see his site). He seems to be saying here that he wants to distance himself from the death of Abubakar Nadama, because he is Dr. Kerry's EDTA supplier. He seems to say that maybe Dr. Kerry used the wrong kind of EDTA, the kind more likely to kill a child.

But it's "nice" to see that Dr. Gordon is looking out for himself, and his future sales, first. And they say, "Big Pharma" is cold blooded.
------------------------------

Dear Health Care Professionals:

You may soon read and hear the kind of hysteria and negative press that I
expected to see, but it will get FAR WORSE before it gets better. As of
this moment, I can only assume that there must have been a substantial
deviation from the standard procedures that I, and all of you, have
established for the safe administration of Calcium EDTA. As incredible as
it may seem to those of you belonging to this discussion group, the
possibility exists that the child was treated with Disodium EDTA
administered by IV Push. I am forced to consider this unfortunate
explanation unless there was some major undiagnosed illness in the child
that no one suspected, such as a major heart defect or perhaps an aneurism
that ruptured at the exact time the patient was receiving the IV Push of
Calcium EDTA. However, the autopsy has been completed and the results were
inconclusive so that they have ordered additional tests, which may take up
to 5 months to complete.

This means that there is no obvious explanation for the death of this
child. My fear is that if someone who is not knowledgeable in chelation and
has not learned that this is complex chemistry assumes, for example, that
all that they have to do to provide magnesium EDTA or Calcium EDTA is just
add either magnesium or calcium to a syringe containing Disodium EDTA.

We could have a serious problem because Disodium EDTA has a black box
warning about
rapid administration to children and simply adding something like Calcium
or Magnesium does not fully convert Disodium EDTA to Calcium EDTA. Then
there is also a problem with discomfort, if you tried to give yourself an
IV push of diluted Disodium EDTA the pain could be extreme so you might
wind up increasing the dose of Lidocaine and again we can get into problems
with the heart if too much of a "caine" if given intravenously.

So let's look at the big picture, there are NO DEATHS occurring when EDTA,
either calcium or Disodium are PROPERLY administered. Now the media will
try to make chelation out to be fraudulent and the tests that we do to
measure lead etc as being meaningless. Amazingly they will bring out Quack
buster Barrett who with a little more effort we may be able to one day put
behind bars for his lies and incompetence.

Thus I have to conclude some error in rate of administration, dosage,
method of preparation probably occurred; in fact, I now believe this is
most likely rather than administering the correct drug, Calcium EDTA,
intravenously, which even in children is safe
and effective.

Doctors who have been providing this treatment to children can hardly stop
talking about the remarkable successes they have been witnessing with
children responding far more rapidly than
we could ever do with just the oral Calcium EDTA that I have been
advocating for so long.

We know that worldwide sales of all forms of EDTA have been steadily
increasing and that based on logical calculations it appears that well over
10 million patients have been safely treated with either Calcium or
Disodium EDTA over the past 32+ years without a single documented fatality,
as long as the established protocols were followed. All the evidence to
date that EDTA is perhaps the safest therapy offered in medicine, outside
of placebos.

To my knowledge, EDTA has been safely administered for nearly 50 years with
the only deaths occurring in the beginning, with terminal cancer patients
suffering uncontrolled hypercalcemia where inappropriate doses of Disodium
EDTA were administered by rapid infusion to patients with known compromised
renal status.

With the extensive proof now existing that everyone today has nearly 1000
times too much lead in their bones and Harvard publishing that this bone
lead will compromise vision there can be no argument that we all have some
heavy metal toxicity. Then once we conclude that government cannot stop the
mercury, cadmium, lead etc from going in the air, and thus into everyone
anywhere on earth, then it becomes a matter of personal choice, live with
these heavy metals or remove them. Oral chelation is clearly necessary
since bone lead will take 10 years to turn over for the average adult, but
some of us want results NOW. Nothing is as effective as the 147 fold
increase in lead excretion over base line that IV Calcium EDTA, PROPERLY
FORMULATED, was documented to induce by Doctors Data with the help of Dr
Whitaker's staff.

Thus I must extend my sympathy to the family of the deceased 5-year-old boy
from Nigeria whose brave mother came to the Pittsburgh area from the United
Kingdom to seek treatment for her autistic child. She was seeing clear
improvements in her son. This was the third infusion he had received. He
apparently had a cardiac arrest and was unable to be resuscitated
immediately following this third infusion of what I fear was not Calcium
EDTA, which is the ONLY form of EDTA that I have advocated for the exciting
rapid infusion technique.

I hope those who have experience with it in their practice are NOT GOING TO
STOP USING it that you have the "rest of the story", as best as we can
establish it at this time. Please understand that the involved doctors
cannot be expected to admit anything on advice of their attorneys. I have
only checked to see if they have ever purchased Calcium EDTA and found the
answer was ?no??. leading me to compose this email in an attempt to
diminish the harm that the media will do to everyone who otherwise could
have been receiving oral and or IV chelation and will now be afraid.

This email may be copied and handed to your patients in an effort to meet
the need for a fully informed consent.

Sincerely,

Garry F. Gordon MD, DO, MD(H)
President, Gordon Research Institute
www.gordonresearch.com

 

At 8/26/2005 9:26 PM, Blogger Kathleen Seidel said...

Re the puzzling matter of lead vs. mercury poisoning: If the child was really suffering from acute lead poisoning, one would expect that his father, a doctor specializing in respiratory medicine, would have recognized symptoms, and would have immediately sought treatment for his son in the U.K.. A Telegraph article on the incident mentioned the many different modifications the family made to their home in order to render it "nontoxic" -- "Everything in their house they made environmentally friendly, including stripped wood and the paintwork" -- thereby making the supposed diagnosis of "lead poisoning" that much more puzzling (unless, of course, he ingested paint chips or inhaled paint dust while the house was being "detoxified," or unless his lead levels rose during his relatively brief time in the U.S.) Mother and doctor both, however, have acknowledged that the boy was being chelated in an attempt to cure his autism, and that this is the reason the family (sans father) moved to the United States in the spring of this year.

Another possibility is that the double diagnosis of lead and mercury poisoning might have something to do with the fact that insurance companies in this country would probably only cover chelation if it were administered for lead poisoning; if the claim form indicated "mercury-induced autism," the procedure would not be covered.

 

At 8/26/2005 10:10 PM, Anonymous HCN said...

In January of 2004 I sent an email to a disability listserv I was on with the title "Bad Idea". I tried to explain that hair analysis was not accurate... and that chelation is not a gentle mild cure-all.

I got a flurry of nasty-grams for that. Including several telling me that testing blood is not a good way to see if there is mercury (yet the chelation through IV is supposed to be gathering the mercury or lead in the BLOOD!!).

It got to the point where the Autism gang took over and would blast anyone who countered with a different idea. Which was really unfortunate because it was NOT an autism group! The straw that broke the camel's back was getting emails from someone who I was told (thank you, Kathleen) was associated with Bradstreet. It seems that the crusaders are hitting OTHER disability forums to help hawk the wares.

So I unsubscribed a couple of weeks ago. I am sorely sorely tempted to send a copy of my "Bad Idea" to the list moderator (who even publicized the Autism/Mercury Yahoo group) with a note that says "I told you so".

 

At 8/26/2005 10:46 PM, Blogger hollywoodjaded said...

Thanks, Orac, for weighing in. Despite your thinking that everything may have been said already, your words were a comfort and I appreciated your post.

 

At 8/26/2005 11:38 PM, Anonymous HCN said...

Spin, spin, spin goes the journalist:
http://www.huffingtonpost.com/david-kirby/autism-and-chelation-whe_b_6286.html

 

At 8/27/2005 1:09 AM, Anonymous I2bpacific said...

Looks like Kirby has a guilty conscience. On the other hand, I guess not. He'd have to have a conscience first.

"I never even heard of IV chelation before. Don't blame me. Whah? Whah?"

 

At 8/27/2005 4:29 AM, Blogger JM O'Donnell said...

"Furthermore, I cannot find any reference in the medical literature about any patient dying from chelation. (Please post them if you have them)."

Just like he can't find anything in the medical literature that shows Chelation actually does anything remotely beneficial?

 

At 8/27/2005 9:52 AM, Blogger charlie said...

If the kid had lead poisoning isn't chelation therapy supported by EBM?

Even if it was a sound treatment plan it should have been done in a hospital.

Most likely the lead story is a cover for trying to cure autism---but lets see what the autopsy says.

Too bad we can't see the doc's past history in the national data bank. I hope the cops can see it if he gets charged.

 

At 8/27/2005 10:23 AM, Blogger Orac said...

Yes, I'm aware of tke Kirby article. I'm debating whether to bother responding. It's a "don't blame me" kind of article.

 

At 8/27/2005 10:26 AM, Blogger Orac said...

Kathleen,

Your point about insurance paying for lead chelation makes sense for American patients. However, the family was from the U.K. and traveled to the U.S. specifically for this treatment. Given that, I highly doubt they had any American insurance that would pay for their treatment, although it is possible if the mother got a job in the U.S. that provided insurance. More likely, the family was paying cash on the barrelhead. Chelation is very profitable for quacks. They usually charge around $100 per infusion and recommend anywhere from 20-30 (or even more) infusions.

 

At 8/27/2005 12:11 PM, Blogger Michael "Sotek" Ralston said...

Y'know, I have to wonder if the father agreed with the treatment.

 

At 8/27/2005 1:53 PM, Anonymous HCN said...

Charlie said: "If the kid had lead poisoning isn't chelation therapy supported by EBM?

Even if it was a sound treatment plan it should have been done in a hospital."

Exactly. Why would he have had to travel from England to the US? If he REALLY had lead poisoning the UK's National Health Service would have provided treatment, possibly at the same hospital the boy's father works at as a doctor.

 

At 8/28/2005 6:22 PM, Anonymous Anonymous said...

Reading Dr Gordon's statement made me sick. He is washing his hands of the whole affair. As for Dr Kerry, even if I believed his theories and believed in his cure, I'd have to conclude he stuffed up in a negligent manner.

The worst part is, of course, that if they do tissue Hg levels and don't find anything, this bunch of disgusting weasels can point with pride and say "Yes, that's because we chelated it out."

Keep it up, Orac and friends.

Dr Justin Moretti, Wollongong, Australia

 

At 8/29/2005 1:26 PM, Anonymous Kathleen Seidel said...

Orac, you're probably right about the family paying out of pocket; after I made my comment, I read a statement made by the mother that the family was not hurting for money; in fact, it was not just mother and son who relocated, but five family members. That takes some moolah. My suspicions have begun to run along the same lines as Charlie's -- "Most likely the lead story is a cover for trying to cure autism." Such a cover might not necessarily have been needed to benefit the family (who could have availed themselves of PHS to deal with an actual case of acute lead poisoning, even if they were broke), but could have been concocted to protect the doctor from accusations that he was violating medical ethics by choosing this particular treatment for the child.

Another thought: this child was five years old and from the UK. To my knowledge, the UK has not had any type of thimerosal in their vaccines during his lifetime. (Maybe someone can confirm or correct this.) Considering the family's reason for relocating, it's unlikely that the mother would have consented to administration of a thimerosal-containing vaccine once they arrived in the U.S. So, unless the family ate fish seven nights a week, or did all that wood-stripping to a house next to a coal-fired power plant, one wonders where all that alleged mercury poisoning could have come from.

 

At 8/30/2005 1:04 AM, Anonymous Zaffran said...

The thing is if the family was sold the bill of goods that "all autism is is mercury poisoning" which Dr. Usman says but in slightly different terms, "if they didn't have heavy metal poisoning they wouldn't be autistic" regarding her patients who are all "heavy metal poisoned" she says,,,
then all the family can do is say, "our child is autistic, therefore he must be mercury poisoned".

Simple logic - profitable for the likes of Dr. Anju Usman and Dr. Roy Kerry.

Abubakar's parents were convinced (at least in part) that he was heavy metal poisoned by the same people who could sell them a cure for it. How tidy.
I would guess that Dr. Usman had her parents send their kids' urine samples to Doctor's Data or Great Smokie's lab, but I can't verify that. If the lab said he was "toxic" and he wasn't. then the police can also implicate the lab in the boy's death.

http://www.fightingautism.org/doctors/index.php
There's a Dr. Hicks on that list who has his patients use Doctor's Data and Great Smokies. Why? Most doctors are affiliated with a nearby lab or a hospital lab at least.
Dr. Hicks looks as quacky as the other names I recognize on that list.
Fighting autism has retained Dr. Kerry there, so far.

 

At 8/30/2005 10:49 AM, Anonymous Anonymous said...

"if they didn't have heavy metal poisoning they wouldn't be autistic" regarding her patients who are all "heavy metal poisoned" she says


reminds me of that old SNL skit with Phil Hartman as a doctor who only delivers girls.

"every once in a while, a little girl is born with a penis and it must be removed."

 

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