Monday, April 13, 2009

Jenny Is Dead, But Her Question Stands

Barbara Mellers, Philip Tetlock, and Barbara Shapiro

On a sunny afternoon in May 2007, a tearful Jenny told her mother how her seventh-grade gym class laughed when she tripped on a hurdle that everyone else cleared easily. A few weeks later came the odd limp. Gradually, weakness spread; her muscles atrophied; her world shrank.

Jenny’s parents frantically rushed her to an ever wider range of specialists, to no avail. By spring 2008, Jenny was a quadriplegic who could breathe only with machine support. She clung to life for almost a year but she never made it to see another spring.

No one knows exactly when Jenny’s disease began—or what disease she had. World-class neurologists suspect Lou Gehrig’s disease, or amyotrophic lateral sclerosis (ALS). This relentless killer spares the mind, while methodically destroying the body’s motor neurons until the patient body slips into total, irreversible paralysis.

Yet medical opinion is not unanimous. The CDC estimates the odds of ALS among teenage girls at 1 in 3 million, less than those of being struck by lightning. A far more common cause of paralysis among teenage girls is autoimmune disease.

This is why world-class immunologists suspect that Jenny had a potentially treatable autoimmune disorder mimicking ALS, possibly triggered by the Gardasil vaccination – for protection against the virus that causes cervical cancer – that she got in March 2007, just weeks before her hurdle accident.

As if the anguish over Jenny’s condition weren’t enough, we are now inviting added trouble. As you might imagine, merely suggesting a link between a vaccination and subsequent illness polarizes people into feuding camps. So, we hasten to add that we are not anti-vaccine zealots (would we have been so quick to give Jenny a new vaccine if we were?). As professors who use statistics in our everyday research, we know that correlation does not mean causation. We agree that cost-benefit ratios generally favor vaccines. Jenny might be an isolated case in a capricious universe.

But we also see the other side. Jenny could be the tip of a growing cluster of grimly similar cases thus far invisible to regulatory watchdogs. That is why we reported Jenny’s case in spring 2008 to the Vaccine Adverse Event Reporting System (VAERS), the federal database for monitoring adverse events. And that is why we have tried repeatedly—and unsuccessfully—to persuade the Center for Disease Control (CDC) to investigate how many Jennys are out there. Thus far, the CDC insists that Jenny is just an isolated statistical blip. They might be right. But wouldn’t it be important to confirm that hunch?

Remarkably, the CDC drew confident conclusions before it had conducted a rigorous study. It limited its search to the VAERS database—even though its shortcomings are well known to insiders. For one thing, it is a voluntary reporting system that almost certainly undercounts adverse events. Many doctors have even never heard of it. And the rest are busy people who are wary of vaccine kooks. Second, VAERS data are also poorly organized, notably, the reporting form does not even offer an entry for diagnosis.

Finally, the accuracy of VAERS data is questionable. It is the rare entry that says “further information requested”; most entries contain no follow-up information on what happened to the patient including whether she lived or died. It is unclear who, if anyone, is tracking the adverse events and sorting cases into similar clusters. And it is impossible to compute how many of all the vaccinated girls are now ill if the government refuses to reveal how many vaccinations in each lot number were administered (such information is proprietary!).

The CDC does not inspire confidence, so we conducted our own shoestring search to determine whether Jenny was alone. We created a website (jenjensfamilyblogspot.com). Although this website has only drawn 40,000 visitors, it has out-performed the federal government in finding girls ominously similar to Jenny (current score is: Jenny site 2; CDC’s VAERS: 0).

One does not need to be a statistician to see how unlikely it is that these two other girls are the only cases out there—or how frightening it is that we already know of three documented cases of girls (those two plus Jenny) who developed ALS within several months after their vaccinations. After all, if the odds of ALS in teenaged girls are 1 in 3 million and we found 3 in only 40,000, it is very possible that many other of the 6 million girls vaccinated have already developed severe neurological collapse, like Jenny.

Surely, one not need to be a conspiracy theorist to ask: How many catastrophic 1-in-3 million events, all within months of Gardasil vaccinations, will it take to get the CDC to launch a major investigation of possible causal connections?

Vaccination, like national defense, is a public good. Society asks citizens to make small sacrifices for our collective safety. Occasionally, some pay a horrific price. As in war, we should honor the fallen, including those fallen to friendly fire. But, by accident or design, our government has made it unduly difficult to identify the fallen in the war against infectious diseases. Without good data, we cannot have a serious policy debate—and we will never know how many Jennys are out there.

Author Note: Barbara Mellers and Philip Tetlock, the parents of Jenny Tetlock, are professors at the University of California - Berkeley. Barbara Shapiro, M.D., Ph.D. is an associate professor of neurology at Case Western University.

12 comments:

Joaquin Buitrago said...

Sorry for your lost, lets keep fighting for Jenny and many other girls. I will exposing your case in a persuasive speech at Wharton Conuty Junior college about Texas governor's mandate to use Gardasil in 6th grade girls.
Thanks.

Red said...

I did not vaccinate my daughter, for I have a friend who truly believes that vaccines gives so many of our children autism. My son was a normal developing child until that fateful injection.

I see people every day who accept the word of their doctor as the bible. And yet our doctors know little if anything about these medications. they most likely get a packet and possibly a DVD and then wham bam thank you ma;am they are injecting our children.

When I was growing up we got on average 5 vaccines in the childhood years. Now they are receiving upwards to over 20 vaccines. Can someone say pharmaceuticals is a business? Ya think.

I think of your daughter often and hope the word gets out and people don't blindly listen to their doctors and weigh for themselves the worth of these injections.

My thoughts are with you.

Crystal said...

I received my second gardasil shot at around 1:45pm and began to experience a migraine at around 3pm then after eating dinner at around 7pm severe nauseau and by 10pm I vomitted the contents of my stomach. I felt better the next morning but the pain at the injection site lasted a week long.

choeksie said...

My husband plays tennis with a man who's daughter has been affected by the Gardasil vaccination, she was very talented at sport at school and now cannot do any sport, she was affected within hours of being vaccinated, she has improved and is under a naturopath, however she still gets dizzy spells and falls over sometimes. She was vaccinated about six montha ago, thanks.

nina said...

I am in the process of having my daugther's 'apparent' adverse reaction to Gardasil 're-classified' (if there is such a thing) as her current report is inaccurage. I am convinced VAERS is interested in the reported side-effects only to dis-prove a connection to Gardasil. Had I not contacted them regarding my daughter's inaccurate report, it would have remained wrong. Aside from the NVIC, no one contacted me to discuss any aspect of my daughter's reaction to the vaccine. I agree with you...VAERS is a dinosaur and so is the government organization in charge of it.

nina said...

I am in the process of re-submitting my daughter's VAERS report as the current one is inaccurate. It is my sincere hope the information will be corrected but I am cautiously optimistic. I believe VAERS is interested in the side-effects only to disprove a connection to the vaccine. In our case, had I not contacted them regarding the mis-information on my daughter's report, it would have remained incorrect. The damage would continue be left unchecked.

Felicia said...

I received the my first vaccine shot and broke out in a mild case of boils. But, as I've never been allergic to anything or had an adverse/hypersensitive reaction to anything in my 23 years (I've had 6 surgeries) I didn't link it up; so I received the 2nd shot.
My skin got 5 times worse and spread down my neck and onto my chest and back(which I'm still dealing with, EIGHT weeks later). My muscles twitch and ache easily. It randomly burns to breathe through my nose and I get incredibly tired and have difficulty concentrating.
I've been vaccinated against everything under the sun, I have the Gardasil vaccine and I have all this to deal with now.
They should not be giving it to anyone. They released it before they even knew what it interacted with badly.
It is an unnecessary vaccine. You should only CONSIDER getting it if Cervical Cancer runs in your family or you are having unprotected sex with multiple partners (that statement should be printed ON THE BOX in LARGE print!)
Stupid company.

Brandy said...

I am so incredibly saddened to hear that Jenny did pass away. I will post this to my Facebook account because Gardisil has always struck a horrific chord within me. I want as many people to know about the possibilities that vaccinations could cause these types of problems. I understand that there might not be a direct link but more people need to look in to them before vax'ing.

I do hope that Jenny's life was full and vibrant while she was here. I am sure that she is missed so much and will send loving and peace filled thoughts to you all.

Please do not give up the fight for understanding. We could all learn so much if you continue despite the "heat" of those who are pressuring you.

James said...

I am sorry for your loss as I know what I would feel were it my daughter.

Perhaps another area of inquiry would be to look at the interaction of the various immunizations. I have seen a similar problem with my brother after his return from the 1st Gulf War. While all of the immunizations, in and of themselves are safe; when various immunizations and contaminants (i.e. household products, common use chemicals like fuel fumes, glue, etc.) are combined there appears to be a toxicity which has not been foreseen. With immunizations rising, depending on the state requirements, from 5 to more than 50, for school children; this combination, like any other can be lethal.

May God Bless your family and friends, Jym

Melissa Kunga Silva said...

I am a nurse, and mostly deal with adult medicine. First, I must say I deeply do not have words for your loss. The picture of your daughter on your site shows her inner and outer beauty. I completely support and congratulate your efforts to help others by intelligently analyzing possibilities. I am sending you links to 2 sites. Both are about Gulf War Syndrome. I feel these are tangentially related to your issue. One is from Boston University School of Public Health that describes subtle neuro changes that could not be attributed to one known disease, but instead falls under the umbrella of Gulf War Syndrome. More related to your daughter's illness is the 2nd site, which mentions that there is an increased incidence of ALS in Gulf War Vets, and that Gulf War Syndrome is Multifactorial. Just a hunch, but I suspect, due to its erratic distribution in young women post Gardasil vaccination, that a Gardasil vaccination mixed with or combined with other toxicities may be the agent. Unfortunately, this makes for a very complex picture, as maybe all of these 'agents' are at govt regulated 'safe' levels, but combined cause a severe, and at times life threatening reaction. I will say that teen ALS is so rare, I've never seen a case of it, and was never taught about it in nursing school, although I have had adult patients with ALS. I cannot explain it, but the way you describe your daughters decline does not read the same as the patients I have treated who had ALS. Their symptom development was very very slow. I am concerned that your daughter's symptoms seemed more of a sudden onset presentation. Again, I don't pretend to know your grief, but I feel this correlation with the multi agents implicated in Gulf War Syndrome may be of some use or help. Please feel free to contact me if I can be of any other service to you. Melissa
http://sph.bu.edu/index.php/component/option,com_insidernews/Itemid,366/articleid,2236/id,623/task,view/

http://www.cnn.com/2008/HEALTH/11/17/gulf.war.illness.study/index.html

Annie said...

I'm so sorry about your daughter! I'm super skeptical about this Gardasil. I'd love to shove a printout of this post in Merck's face and say, "you think this is 'virtually side effect free?'"

Keep fighting!

SeekerMum said...

What are we doing to our children?