All it would take is for neurologists to ask young female patients—and soon, young men too—a simple question.
“You have symptoms of ALS. Did you have the Gardasil vaccination?”
That’s the only way that we’re going to eventually find out whether the unusually rapid-onset ALS-like paralysis that killed Jenny Tetlock and Whitney Baird was indeed related to their recent vaccinations with Gardasil.
Up until now, no-one’s been asking. Most parents take routine vaccinations for granted and don’t think to bring it up. Merck and the FDA insist there’s no link. But at the 134th meeting of the American Neurological Association, Catherine Lomen-Hoerth, MD, director of the ALS Center at University of California San Francisco Medical Center, was asking.
Jenny Tetlock died from a neurological disease, mediated by immune responses, which led to extensive damage in her spinal cord. Lomen-Hoerth noted the unusual inflammation in Jenny’s spine and announced that she and her team are planning to study girls with ALS, both those who got the vaccination and those who didn’t, to compare symptoms and pathological features.
Hopefully, neurologists will now start asking about Gardasil—so simple!—and perhaps even comb through the records of any current and deceased patients with juvenile ALS, and then send the information on to Lomen-Hoerth. It won't just be Jenny's parents who are saying, look, maybe there's no connection, but we want to know for sure.
And it’s not at all irrational to ask that question. Right now, there’s no causal link established between Gardasil and ALS, and two cases among millions of girls safely inoculated with the HPV vaccine means zip. However, given the unusual spinal inflammation (not a hallmark of ALS) and Jenny and Whitney’s shared history of a childhood autoimmune skin disorder that might have made them more vulnerable; given that periods of paralysis have marked mystery post-Gardasil medical conditions in a number of girls—given all that, there’s good reason to ask the question seriously.
Showing posts with label ALS. Show all posts
Showing posts with label ALS. Show all posts
Sunday, October 18, 2009
Wednesday, July 22, 2009
How to Make Gardasil Side Effects Disappear
Since Gardasil made its debut, 15,716 suspected and actual side effects of the HPV vaccine have been reported to VAERS, our oh-so-fallible watchdog system. Just 15,716 bad reactions to who knows how many millions of vaccinations given—statistically insignificant, one might say, especially since so many were minor. Pain at the injection site, perhaps, or a little fainting spell.
The 736 suspected serious Gardasil side effects to date include 24 deaths, 147 life-threatening reactions, 255 permanent disabilities, 496 hospitalizations, 127 prolonged hospitalizations, and 544 emergency room visits.
And of course it’s important to remember that just because a report has been made to VAERS, that doesn’t mean the connection with Gardasil has been proven. In fact, some of the deaths almost certainly weren’t connected. It’s just as important to note that the system is notoriously fallible and that as few as one in ten reactions are reported, perhaps in part because information sheets handed to parents guide them to make a VAERS report only in the case of an immediate allergic reaction; there’s no mention at all of more subtle reactions.
But still, statistically insignificant.
Unless you think about the lesson we learned—or should have learned—from a doctoral student’s refinement of her thesis advisor’s study.
Remember that scandal, just a few years back? Harvard’s Dr. Chester Douglass took a research grant from the NIEH to study the possibility that fluoride in our water supply could cause osteosarcoma, a very rare bone cancer usually resulting in amputation or death. Douglass looked at 139 males and females with osteosarcoma and 280 matched controls, all of whom drank fluoridated tap water, and duly reported back that nope, there was no problem. Statistically speaking. Unfortunately for him he quoted a thesis study by Elise Bassin, his graduate student, as if it supported his conclusions. The thesis itself, though, was mysteriously unavailable to health researchers.
Eventually some terriers from the Environmental Working Group obtained limited access. And discovered that smart Elise had worked a lot harder and a lot more intelligently than her professor. Theorizing that children are much more likely to be susceptible to any harmful effects of fluoride at a time when their bones are growing rapidly, she focused only on the under-20s and their matched controls, and furthermore verified fluoride levels in the tap water drunk by all the children for each year in their lives, rather than just looking at the water they were drinking at the time of the study.
I won’t overload you with the details of her very plausible theory. The end result, however, was that yes, according to her study fluoridated water indeed appeared to raise the (tiny) risk of osteosarcoma in young males by 500 to 700 percent, with a particular risk between the ages of 6 and 8. Certainly a very different conclusion from that reached by Douglass, who moonlighted as editor-in-chief of the Colgate Oral Report and who chose to merge the statistics into the general population.
So back to Gardasil. If you look at the VAERS numbers with a traditional view to collateral damage, i.e. that a) a few will necessarily suffer for the greater good and b) numbers for nasties like motor neurone disease aren’t really all that different from what you might reasonably expect in the general population, then you probably see no cause to study Gardasil any further. You can make the side effects effectively disappear. by merging them into the general population.
But if you look at people rather than statistics; if you’re one of the young women affected, or the parent of one, you might wish like hell that you had an Elise Bassin looking at these happy statistics and applying a curious mind to them.
A curious scientific mind might look, for instance, at 97 cases of arthralgia, 4 of rheumatoid arthritis, 4 of juvenile arthritis and 3 of arthritis reported to VAERS, plus 2 cases of rheumatoid arthritis, 5 of arthritis, 1 of reactive arthritis, and 1 of juvenile arthritis seen in Merck’s initial study—a three-fold increase over the controls, who also received the aluminum-containing adjuvant—and wonder if these girls came from a subset. A subset of some kind that required only an environmental trigger, such as a vaccine, to wreak havoc on young bodies. Find the subset and you find a future group that should avoid Gardasil, that would be the way a Bassin-style mind would look at it.
A read through the VAERS reports suggests all kinds of subsets that should be studied by someone with a fine and open mind, someone who’s willing to put in the time to get exhaustive histories from these girls. Someone who might look at Jenny Tetlock’s devastating bout with extraordinarily rapid-onset ALS-like symptoms—the symptoms that killed her at 13—and at the two Gardasil girls just like her, and be consumed with the desire to know about any common factors and how they might have made those girls vulnerable. Someone who might study 68 reported cases of convulsions and 11 of epilepsy. Who might put out a call for similar cases in the general population, cases that went unreported just as the two ALS-type cases like Tetlock’s went unreported until her parents put up a blog.
Who might wonder why so many different immune diseases appear to be triggered by Gardasil, and instead of saying “Statistically, it doesn’t merit studying” would say “Damn, I just have to figure this out, so that we know which girls shouldn’t get the vaccine in future.”
We can make potential side effects statistically disappear alright. But we shouldn’t want to.
The 736 suspected serious Gardasil side effects to date include 24 deaths, 147 life-threatening reactions, 255 permanent disabilities, 496 hospitalizations, 127 prolonged hospitalizations, and 544 emergency room visits.
And of course it’s important to remember that just because a report has been made to VAERS, that doesn’t mean the connection with Gardasil has been proven. In fact, some of the deaths almost certainly weren’t connected. It’s just as important to note that the system is notoriously fallible and that as few as one in ten reactions are reported, perhaps in part because information sheets handed to parents guide them to make a VAERS report only in the case of an immediate allergic reaction; there’s no mention at all of more subtle reactions.
But still, statistically insignificant.
Unless you think about the lesson we learned—or should have learned—from a doctoral student’s refinement of her thesis advisor’s study.
Remember that scandal, just a few years back? Harvard’s Dr. Chester Douglass took a research grant from the NIEH to study the possibility that fluoride in our water supply could cause osteosarcoma, a very rare bone cancer usually resulting in amputation or death. Douglass looked at 139 males and females with osteosarcoma and 280 matched controls, all of whom drank fluoridated tap water, and duly reported back that nope, there was no problem. Statistically speaking. Unfortunately for him he quoted a thesis study by Elise Bassin, his graduate student, as if it supported his conclusions. The thesis itself, though, was mysteriously unavailable to health researchers.
Eventually some terriers from the Environmental Working Group obtained limited access. And discovered that smart Elise had worked a lot harder and a lot more intelligently than her professor. Theorizing that children are much more likely to be susceptible to any harmful effects of fluoride at a time when their bones are growing rapidly, she focused only on the under-20s and their matched controls, and furthermore verified fluoride levels in the tap water drunk by all the children for each year in their lives, rather than just looking at the water they were drinking at the time of the study.
I won’t overload you with the details of her very plausible theory. The end result, however, was that yes, according to her study fluoridated water indeed appeared to raise the (tiny) risk of osteosarcoma in young males by 500 to 700 percent, with a particular risk between the ages of 6 and 8. Certainly a very different conclusion from that reached by Douglass, who moonlighted as editor-in-chief of the Colgate Oral Report and who chose to merge the statistics into the general population.
So back to Gardasil. If you look at the VAERS numbers with a traditional view to collateral damage, i.e. that a) a few will necessarily suffer for the greater good and b) numbers for nasties like motor neurone disease aren’t really all that different from what you might reasonably expect in the general population, then you probably see no cause to study Gardasil any further. You can make the side effects effectively disappear. by merging them into the general population.
But if you look at people rather than statistics; if you’re one of the young women affected, or the parent of one, you might wish like hell that you had an Elise Bassin looking at these happy statistics and applying a curious mind to them.
A curious scientific mind might look, for instance, at 97 cases of arthralgia, 4 of rheumatoid arthritis, 4 of juvenile arthritis and 3 of arthritis reported to VAERS, plus 2 cases of rheumatoid arthritis, 5 of arthritis, 1 of reactive arthritis, and 1 of juvenile arthritis seen in Merck’s initial study—a three-fold increase over the controls, who also received the aluminum-containing adjuvant—and wonder if these girls came from a subset. A subset of some kind that required only an environmental trigger, such as a vaccine, to wreak havoc on young bodies. Find the subset and you find a future group that should avoid Gardasil, that would be the way a Bassin-style mind would look at it.
A read through the VAERS reports suggests all kinds of subsets that should be studied by someone with a fine and open mind, someone who’s willing to put in the time to get exhaustive histories from these girls. Someone who might look at Jenny Tetlock’s devastating bout with extraordinarily rapid-onset ALS-like symptoms—the symptoms that killed her at 13—and at the two Gardasil girls just like her, and be consumed with the desire to know about any common factors and how they might have made those girls vulnerable. Someone who might study 68 reported cases of convulsions and 11 of epilepsy. Who might put out a call for similar cases in the general population, cases that went unreported just as the two ALS-type cases like Tetlock’s went unreported until her parents put up a blog.
Who might wonder why so many different immune diseases appear to be triggered by Gardasil, and instead of saying “Statistically, it doesn’t merit studying” would say “Damn, I just have to figure this out, so that we know which girls shouldn’t get the vaccine in future.”
We can make potential side effects statistically disappear alright. But we shouldn’t want to.
Thursday, April 16, 2009
One Click for Jenny: Gardasil Question Leads to Plea for Overhauling VAERS
So here’s the thing. We can trust in the safety of the HPV vaccine Gardasil—even though it was tested for only a relatively short time before hitting the market—because the government is monitoring it, right?
Sorry. VAERS, a.k.a. the Vaccine Adverse Event Reporting System, is very far from infallible. And one little personal blog, Jenny’s Journey, has proved that by outperforming it.
Jenny Tetlock developed a mysterious paralysis shortly after receiving the Gardasil vaccine. Despite extensive testing no-one could determine whether she was being rapidly killed by ALS or by an autoimmune disease that mimicked ALS. Jenny died last month, less than two years later, at the shatteringly young age of 15.
Jenny’s parents, although cautious about flinging the blame on Gardasil, had asked VAERS to investigate the possibility that Gardasil could have triggered Jenny’s condition. The mighty VAERS system came up with absolutely no comparables, and thus decided that a link was virtually impossible. A neurologist did later independently discover a possible comparable buried in the system; however there was insufficient contact information for verification.
Upstart site Jenny’s Journey, the Tetlock's personal blogsite, came up with two strong comparables. Two strong comparables that had up until then gone unreported to VAERS because the girls’ parents and doctors hadn’t even considered that their unusually rapidly progressing ALS could be connected to their recent Gardasil shots. And sadly, there's a real possibility that if a small and under-publicized site could find those two girls, there could well be even more.
We’re all busy people, so in case you have no time or inclination to read further, I’ll cut to the chase before describing the limits of VAERS: please go to http://oneclickonelife.org/ to sign a petition to get the “dinosaur” VAERS system overhauled. Regardless of whether you’re a Gardasil enthusiast, a no-vaccines-ever parent, or you’re simply concerned about making sure that vaccines “for the public good” are just as good as they can be, please check out the petition. It’s important. We need to fix VAERS.
Why is VAERS So Inadequate?
For one thing, it’s totally voluntary and poorly advertised. Although parents, pharmacists, doctors and patients may all fill out the forms, it is estimated that perhaps ten percent of all side effects and adverse events are actually reported.
First, you’d have to connect the dots, perhaps days or weeks or even months after the event—something that is often difficult, particularly at a stressful time. Then you’d have to know what to do. Although parents are typically given a vaccine information sheet that includes the VAERS website and phone numbers at the time of their child’s shot, most don’t read it, tossing it immediately because they don’t expect a serious reaction. If they do get to the VAERS website, it can be cumbersome and confusing.
“I know the family of a young lady who just died of a debilitating neural disorder, possibly triggered by the Gardasil vaccine. Their attempts to use the Vaccine Adverse Events Reporting System were deeply disappointing,” commented one signer of the petition.
Doctors, already overloaded with paperwork and red tape, don't often tap into the system. Those that do use it report that it ain’t easy. Two comments from the petition:
“Improvement of the VAER is exactly the type of step we should be taking to allow technology to improve patient care, not harm it. I fully support the efforts of OneClickOneLife to harness technology to improve this vastly outdated system. As a practicing physician I have found it tremendously cumbersome to report any adverse effect of any drug therapy which is not only unfortunate but unconscionable given the technology that now exists.”
“I am an employee in the health care field whom has completed the VAERS form. It is not user friendly, complete in all needed documentation and is out dated.”
And something doctors don’t like to discuss: it’s not easy to admit that the vaccine you’ve advocated and administered may be causing problems. Many parents ask pediatricians, “Would you give it to YOUR child?” We’re almost always confidently told “of course!”
Furthermore, doctors, researchers, scientists and even pharmaceutical executives are only human. Dr. John Colquhoun, Auckland’s principal dental officer in the 80s, came to regret strenuously advocating the fluoridation of Auckland’s water while ignoring evidence that dental decay was already rapidly declining. Whether or not you’re a fan of fluoride, his conclusion is interesting.
“I now know that what my colleagues and I were doing is what the history of science shows all professionals do when their pet theory is confronted by disconcerting new evidence: they bend over backwards to explain away the new evidence,” he wrote. “They try very hard to keep their theory intact—especially so if their own professional reputations depend on maintaining that theory.”
Complete and Accurate?
And then there’s accuracy. Perhaps because of the archaic nature of the reporting system, many reports don’t have enough information for follow-up or verification; others are simply erroneous.
Deborah Kotz, who has written several thoughtful and informative articles about Gardasil for US News and World Reports, noted that Chris Tarsell’s sudden death after receiving a Gardasil shot was wrongly reported to VAERS. Her doctor informed VAERS that the autopsy found that Chris had died of “an inflammation of the spleen caused by a life-threatening virus.” Although some minor inflammation of the spleen had been found, the report had in fact concluded that the death was due to "cardiac arrest, cause undetermined."
There’s also jumping-to-conclusions-itis—something that the Tetlocks have tried hard to avoid. Parents hear that there are concerns about Gardasil, say, and immediately assume that any little thing is connected to the shots. While over-reporting is to my mind infinitely preferable to under-reporting, it can overload and confuse the system.
Follow-Up
Several comments on the petition highlight the lack of follow-up. One would think that if one reported a serious adverse effect, the FDA would be on your doorstep shortly; apparently one could well be wrong.
VAERS data should eventually get to the Clinical Immunization Safety Assessment (CISA) Network, a national network of six medical research centers with expertise in immunization safety which research immunization-associated health issues. But those particular mills appear to grind exceeding slow, and unless there is an unmistakable pattern with significant numbers of individuals affected, adverse events will be dismissed as “unlikely connections”. And the Vaccine Safety Data Link, developed in conjunction with several large HMOS, tracks vaccines but doesn’t necessarily connect dots with cases such as Jenny’s.
According to Kotz, the CDC is now finally investigating the three related cases of ALS and has acknowledged that the question of ALS triggered by a vaccine has occurred before, when military personnel were vaccinated against anthrax. CDC officials don’t believe there’s a link, however, but also acknowledged that the media is essential to getting the word out about vaccine issues and encouraging doctors to file reports. Oy vey. While I’m glad that reporters like Kotz are paying attention and following up, shouldn’t a tax dollar or two be spared for that?
Should Wal-Mart take Over VAERS?
Again and again I hear and read complaints about the sheer incompetence of the VAERS system. It’s enough to make me wonder whether Wal-Mart should take it over.
After all, if Wally World’s incredibly creepy information and tracking system is sensitive enough to send Pop-Tarts to soon-to-be hurricane-ravaged towns in an instant, wouldn’t it be infinitely more useful tracking and analyzing information that could save lives? It notoriously did a better job than our government after Hurricane Katrina. And Wally World sure seems to know how to get people’s attention.
OK, I’m Finished Now…
…but again, please go to oneclickonelife.org to sign the petition to bring our creaking VAERS system into the 21st century.
I strongly believe that vaccinations save lives, but I just as strongly believe that there are things about them that we don’t know yet. If VAERS can help to identify small patterns, not just large ones, that can help identify those people who ought not to get vaccinations because of, say, a family history of autoimmune disease, shouldn’t we make sure that it does so?And if your child has been vaccinated with Gardasil, follow through and insist that your doctor does the same by reporting on any side effects or adverse events at:
Vaccine Adverse Event Reporting System (VAERS) – A government program for vaccine safety, co-sponsored by the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA).
RateADrug.com – Quick 5 minute, anonymous Gardasil survey. RateADrug is a community site for sharing experiences and learning about risks and benefits of prescription medications and alternative treatments. Post comments and view other people’s experiences with Gardasil.
National Vaccine Information Center (NVIC) –Long questionnaire. This is a non-profit organization that advocates vaccine safety and preventing vaccine injury through education.
Sorry. VAERS, a.k.a. the Vaccine Adverse Event Reporting System, is very far from infallible. And one little personal blog, Jenny’s Journey, has proved that by outperforming it.
Jenny Tetlock developed a mysterious paralysis shortly after receiving the Gardasil vaccine. Despite extensive testing no-one could determine whether she was being rapidly killed by ALS or by an autoimmune disease that mimicked ALS. Jenny died last month, less than two years later, at the shatteringly young age of 15.
Jenny’s parents, although cautious about flinging the blame on Gardasil, had asked VAERS to investigate the possibility that Gardasil could have triggered Jenny’s condition. The mighty VAERS system came up with absolutely no comparables, and thus decided that a link was virtually impossible. A neurologist did later independently discover a possible comparable buried in the system; however there was insufficient contact information for verification.
Upstart site Jenny’s Journey, the Tetlock's personal blogsite, came up with two strong comparables. Two strong comparables that had up until then gone unreported to VAERS because the girls’ parents and doctors hadn’t even considered that their unusually rapidly progressing ALS could be connected to their recent Gardasil shots. And sadly, there's a real possibility that if a small and under-publicized site could find those two girls, there could well be even more.
We’re all busy people, so in case you have no time or inclination to read further, I’ll cut to the chase before describing the limits of VAERS: please go to http://oneclickonelife.org/ to sign a petition to get the “dinosaur” VAERS system overhauled. Regardless of whether you’re a Gardasil enthusiast, a no-vaccines-ever parent, or you’re simply concerned about making sure that vaccines “for the public good” are just as good as they can be, please check out the petition. It’s important. We need to fix VAERS.
Why is VAERS So Inadequate?
For one thing, it’s totally voluntary and poorly advertised. Although parents, pharmacists, doctors and patients may all fill out the forms, it is estimated that perhaps ten percent of all side effects and adverse events are actually reported.
First, you’d have to connect the dots, perhaps days or weeks or even months after the event—something that is often difficult, particularly at a stressful time. Then you’d have to know what to do. Although parents are typically given a vaccine information sheet that includes the VAERS website and phone numbers at the time of their child’s shot, most don’t read it, tossing it immediately because they don’t expect a serious reaction. If they do get to the VAERS website, it can be cumbersome and confusing.
“I know the family of a young lady who just died of a debilitating neural disorder, possibly triggered by the Gardasil vaccine. Their attempts to use the Vaccine Adverse Events Reporting System were deeply disappointing,” commented one signer of the petition.
Doctors, already overloaded with paperwork and red tape, don't often tap into the system. Those that do use it report that it ain’t easy. Two comments from the petition:
“Improvement of the VAER is exactly the type of step we should be taking to allow technology to improve patient care, not harm it. I fully support the efforts of OneClickOneLife to harness technology to improve this vastly outdated system. As a practicing physician I have found it tremendously cumbersome to report any adverse effect of any drug therapy which is not only unfortunate but unconscionable given the technology that now exists.”
“I am an employee in the health care field whom has completed the VAERS form. It is not user friendly, complete in all needed documentation and is out dated.”
And something doctors don’t like to discuss: it’s not easy to admit that the vaccine you’ve advocated and administered may be causing problems. Many parents ask pediatricians, “Would you give it to YOUR child?” We’re almost always confidently told “of course!”
Furthermore, doctors, researchers, scientists and even pharmaceutical executives are only human. Dr. John Colquhoun, Auckland’s principal dental officer in the 80s, came to regret strenuously advocating the fluoridation of Auckland’s water while ignoring evidence that dental decay was already rapidly declining. Whether or not you’re a fan of fluoride, his conclusion is interesting.
“I now know that what my colleagues and I were doing is what the history of science shows all professionals do when their pet theory is confronted by disconcerting new evidence: they bend over backwards to explain away the new evidence,” he wrote. “They try very hard to keep their theory intact—especially so if their own professional reputations depend on maintaining that theory.”
Complete and Accurate?
And then there’s accuracy. Perhaps because of the archaic nature of the reporting system, many reports don’t have enough information for follow-up or verification; others are simply erroneous.
Deborah Kotz, who has written several thoughtful and informative articles about Gardasil for US News and World Reports, noted that Chris Tarsell’s sudden death after receiving a Gardasil shot was wrongly reported to VAERS. Her doctor informed VAERS that the autopsy found that Chris had died of “an inflammation of the spleen caused by a life-threatening virus.” Although some minor inflammation of the spleen had been found, the report had in fact concluded that the death was due to "cardiac arrest, cause undetermined."
There’s also jumping-to-conclusions-itis—something that the Tetlocks have tried hard to avoid. Parents hear that there are concerns about Gardasil, say, and immediately assume that any little thing is connected to the shots. While over-reporting is to my mind infinitely preferable to under-reporting, it can overload and confuse the system.
Follow-Up
Several comments on the petition highlight the lack of follow-up. One would think that if one reported a serious adverse effect, the FDA would be on your doorstep shortly; apparently one could well be wrong.
VAERS data should eventually get to the Clinical Immunization Safety Assessment (CISA) Network, a national network of six medical research centers with expertise in immunization safety which research immunization-associated health issues. But those particular mills appear to grind exceeding slow, and unless there is an unmistakable pattern with significant numbers of individuals affected, adverse events will be dismissed as “unlikely connections”. And the Vaccine Safety Data Link, developed in conjunction with several large HMOS, tracks vaccines but doesn’t necessarily connect dots with cases such as Jenny’s.
According to Kotz, the CDC is now finally investigating the three related cases of ALS and has acknowledged that the question of ALS triggered by a vaccine has occurred before, when military personnel were vaccinated against anthrax. CDC officials don’t believe there’s a link, however, but also acknowledged that the media is essential to getting the word out about vaccine issues and encouraging doctors to file reports. Oy vey. While I’m glad that reporters like Kotz are paying attention and following up, shouldn’t a tax dollar or two be spared for that?
Should Wal-Mart take Over VAERS?
Again and again I hear and read complaints about the sheer incompetence of the VAERS system. It’s enough to make me wonder whether Wal-Mart should take it over.
After all, if Wally World’s incredibly creepy information and tracking system is sensitive enough to send Pop-Tarts to soon-to-be hurricane-ravaged towns in an instant, wouldn’t it be infinitely more useful tracking and analyzing information that could save lives? It notoriously did a better job than our government after Hurricane Katrina. And Wally World sure seems to know how to get people’s attention.
OK, I’m Finished Now…
…but again, please go to oneclickonelife.org to sign the petition to bring our creaking VAERS system into the 21st century.
I strongly believe that vaccinations save lives, but I just as strongly believe that there are things about them that we don’t know yet. If VAERS can help to identify small patterns, not just large ones, that can help identify those people who ought not to get vaccinations because of, say, a family history of autoimmune disease, shouldn’t we make sure that it does so?And if your child has been vaccinated with Gardasil, follow through and insist that your doctor does the same by reporting on any side effects or adverse events at:
Vaccine Adverse Event Reporting System (VAERS) – A government program for vaccine safety, co-sponsored by the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA).
RateADrug.com – Quick 5 minute, anonymous Gardasil survey. RateADrug is a community site for sharing experiences and learning about risks and benefits of prescription medications and alternative treatments. Post comments and view other people’s experiences with Gardasil.
National Vaccine Information Center (NVIC) –Long questionnaire. This is a non-profit organization that advocates vaccine safety and preventing vaccine injury through education.
Wednesday, March 18, 2009
Jenny’s Journey Ends: Gardasil Questions Remain
It’s impossible not to cry, reading that Jenny Tetlock, the impish 15-year old whose struggle with a mystery ALS-like disease is chronicled on the blog Jenny’s Journey, died on March 15th.
I first stumbled on the blog right after I’d hauled a carload of laughing, slightly obsessed young girls to their second viewing of the movie Twilight. To read that Jenny had had to make two attempts to see the movie just once broke my heart, and like so many other people, I returned to the blog again and again, hoping that someone smart, somewhere in the world, would crack her case.
Jenny’s struggle was especially moving not because of her parents’ private agony, but because of their measured public response. They made it very clear that they did not want Jenny to become “the poster child” for an anti-Gardasil outcry. What they wanted was for doctors and researchers to find the cause and cure, whatever it might prove to be, for Jenny’s devastating illness. But they also wanted them to take a possible connection with the HPV vaccine Gardasil seriously.
Jenny’s symptoms became apparent shortly after her third Gardasil shot when she was suddenly unable to clear a hurdle that the other kids in her class could clear easily. With startling rapidity she became a quadriplegic, unable to breathe on her own for more than a second or two.
“Despite over a year of intensive testing at several of the country’s top medical centers, doctors still aren’t sure what has caused Jenny’s paralysis,” reads a post on Jenny’s Journey. “Some (mostly neurologists) believe that she has an unusual, rapidly progressive form of juvenile ALS – the same disease that confines Stephen Hawking to a wheelchair. Others (mostly immunologists) think she may have a rare autoimmune disease that mimics ALS…her family hesitates to declare Gardasil the cause of her illness without scientific evidence, but some MDs at top hospitals see the connection as possible and even plausible.”
They appealed for people with similar issues, with or without the Gardasil HPV connection, to contact them. One such was Whitney Baird, who died last August at the age of 22, just 13 months after being vaccinated with Gardasil. Like Jenny she had had an autoimmune skin disorder and developmental delays as a child, and her condition also deteriorated extraordinarily rapidly, raising the possibility that Gardasil had triggered a reaction that had started killing off motor neurons.
Autoimmune diseases “arise in genetically predisposed individuals but require an environmental trigger,” according to the Lancet, and my posts about the autoimmune disease/ Gardasil connection (February 2 and 4) included this:
“As examples, Dr. Harper (Dr. Diane Harper, who was involved in Gardasil’s clinical trials) mentioned family history of motor neuron disease or autoimmune diseases, which could affect how the person reacts to the vaccine,” wrote medical journalist Zosia Chustecka. “She illustrated this point by saying: ‘Salt does not usually kill anybody, but for a person with congestive heart failure, it could lead to fatal pulmonary edema, so you could say that salt caused their death, as it was the last straw that broke the camel's back.’
There’s also the aluminum connection. A high incidence of ALS in the Western Pacific was linked to dietary toxins such as aluminum; research into a spike of possibly heavy metal-related ALS cases in Gulf War veterans is ongoing.
Jenny’s family notes that since going public with Jenny’s illness, they have found two other cases of ALS following vaccination with Gardasil (the families had not previously thought to report them to VAERS) and learned of two more possible cases. Five cases make two beyond the norm for this age group, and the VAERS system is notoriously fallible and under-used.
Jenny’s parents, quite rightly, don’t want to just throw her disease randomly on the HPV vaccine's doorstep. There may not be a connection at all, although there are certainly very reasonable grounds for suspicion and their questions deserve to be investigated.
Science can be loosely defined as “what we know so far.” The Tetlocks just want us to advance that knowledge a little.
Meanwhile, my heart goes out to Jenny’s family; losing a beloved child is utterly unimaginable. Thank you for your persistence and thank you for making us ask questions. I hope that you will find some measure of peace once we have answers.
And Godspeed, Jenny.
I first stumbled on the blog right after I’d hauled a carload of laughing, slightly obsessed young girls to their second viewing of the movie Twilight. To read that Jenny had had to make two attempts to see the movie just once broke my heart, and like so many other people, I returned to the blog again and again, hoping that someone smart, somewhere in the world, would crack her case.
Jenny’s struggle was especially moving not because of her parents’ private agony, but because of their measured public response. They made it very clear that they did not want Jenny to become “the poster child” for an anti-Gardasil outcry. What they wanted was for doctors and researchers to find the cause and cure, whatever it might prove to be, for Jenny’s devastating illness. But they also wanted them to take a possible connection with the HPV vaccine Gardasil seriously.
Jenny’s symptoms became apparent shortly after her third Gardasil shot when she was suddenly unable to clear a hurdle that the other kids in her class could clear easily. With startling rapidity she became a quadriplegic, unable to breathe on her own for more than a second or two.
“Despite over a year of intensive testing at several of the country’s top medical centers, doctors still aren’t sure what has caused Jenny’s paralysis,” reads a post on Jenny’s Journey. “Some (mostly neurologists) believe that she has an unusual, rapidly progressive form of juvenile ALS – the same disease that confines Stephen Hawking to a wheelchair. Others (mostly immunologists) think she may have a rare autoimmune disease that mimics ALS…her family hesitates to declare Gardasil the cause of her illness without scientific evidence, but some MDs at top hospitals see the connection as possible and even plausible.”
They appealed for people with similar issues, with or without the Gardasil HPV connection, to contact them. One such was Whitney Baird, who died last August at the age of 22, just 13 months after being vaccinated with Gardasil. Like Jenny she had had an autoimmune skin disorder and developmental delays as a child, and her condition also deteriorated extraordinarily rapidly, raising the possibility that Gardasil had triggered a reaction that had started killing off motor neurons.
Autoimmune diseases “arise in genetically predisposed individuals but require an environmental trigger,” according to the Lancet, and my posts about the autoimmune disease/ Gardasil connection (February 2 and 4) included this:
“As examples, Dr. Harper (Dr. Diane Harper, who was involved in Gardasil’s clinical trials) mentioned family history of motor neuron disease or autoimmune diseases, which could affect how the person reacts to the vaccine,” wrote medical journalist Zosia Chustecka. “She illustrated this point by saying: ‘Salt does not usually kill anybody, but for a person with congestive heart failure, it could lead to fatal pulmonary edema, so you could say that salt caused their death, as it was the last straw that broke the camel's back.’
There’s also the aluminum connection. A high incidence of ALS in the Western Pacific was linked to dietary toxins such as aluminum; research into a spike of possibly heavy metal-related ALS cases in Gulf War veterans is ongoing.
Jenny’s family notes that since going public with Jenny’s illness, they have found two other cases of ALS following vaccination with Gardasil (the families had not previously thought to report them to VAERS) and learned of two more possible cases. Five cases make two beyond the norm for this age group, and the VAERS system is notoriously fallible and under-used.
Jenny’s parents, quite rightly, don’t want to just throw her disease randomly on the HPV vaccine's doorstep. There may not be a connection at all, although there are certainly very reasonable grounds for suspicion and their questions deserve to be investigated.
Science can be loosely defined as “what we know so far.” The Tetlocks just want us to advance that knowledge a little.
Meanwhile, my heart goes out to Jenny’s family; losing a beloved child is utterly unimaginable. Thank you for your persistence and thank you for making us ask questions. I hope that you will find some measure of peace once we have answers.
And Godspeed, Jenny.
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