Setting the Record Straight

This morning, the CBS Early Show ran a story about Gardasil, using Jenny as the example of a girl who may have experienced an “adverse reaction” to the vaccine. CBS contacted the family; we did not contact them. Family representatives emphasized to CBS’s producers Boxer and Bicknell that we do not want Jenny to become the poster child for the anti-Gardasil campaign and that it is by no means certain that Gardasil caused Jenny’s illness. Rather, our goal in making Jenny’s sad story public is to locate any possible “comparables” to Jenny – which could include girls (and even boys) who have not taken Gardasil, but who have experienced a rapid decline and paralysis that is resistant to the many kinds of treatment Jenny already has received. We are disappointed that the CBS on-air story did not mention the search for comparables and that the online version of the story merely suggests that “Jenny's father hopes a blog he started will prompt other teens with similar post-vaccination problems to come forward.” That is, at best, half the story: Jenny’s family needs to hear about any and all possible comparable cases, regardless of the apparent cause.

To set the record straight, and to get the information so desperately needed to help Jenny, we publish here the full statement that the family gave to CBS:

“The family believes that there may be a link between Jenny’s health and the HPV vaccination – at the very least, the timing of her third Gardasil injection (March 2007) and the apparent onset of symptoms sometime later in the spring of 2007 is suggestive. But, there is no medical consensus on whether this hypothesis is stronger than other possible explanations. A variety of hypotheses relating to the HPV vaccination remain in the running, and the family is concerned that these vaccine-related hypotheses have not yet gotten the full investigation required to accept or reject Gardasil as a potential explanation (in full or in part) for Jenny’s condition. The family has an understandable and strong desire that all such possibilities be thoroughly investigated immediately, as Jenny’s life hangs in the balance.

“The desperate need is to identify any ‘strong comparables’ to Jenny’s case, where a comparable is defined as someone (1) who has experienced rapidly progressive weakening and loss of the use of his/her limbs, (2) for whom the onset of the condition began before adulthood, and (3) for whom treatments such as immunoglobulin (IVIG), plasmapheresis, steroids and immunosuppressants such as Cytoxan have failed to halt the progression of disease. The comparable would be even stronger if (4) the individual were female rather than male (apparently, neurodegenerative diseases such as juvenile-onset ALS are much less common in females, which is part of what makes the nature of Jenny’s disease so mysterious). And, it would certainly be of interest if (5) the potential comparable had received the Gardasil vaccine (or perhaps some other vaccine with key similarities, such as an aluminum adjuvant) prior to the onset of symptoms.

“The cause of Jenny’s illness remains a medical mystery. Finding relevant comparables could help to solve that mystery and thus provide a crucial clue to finding the treatment that could save Jenny’s life. Time is of the essence because Jenny is now a quadriplegic and is losing the struggle to breathe. Therefore, the family appeals to your viewers to bring any potential comparables to their notice by sending an e-mail to jenjensfamily@gmail.com.”