In response to my recent post about the government deciding to take a closer look at cases of paralysis that occurred after Gardasil vaccination, I received comments and E-mails from several devastated mothers whose daughters became ill for no apparent reason in the days and weeks after getting the vaccine, which protects against the cervical-cancer-causing human papillomavirus (HPV).
Here's a sample:
- "My 21-year-old daughter, Chris, got her third shot of Gardasil on June 3, 2008," Emily Tarsell wrote me last week in an E-mail. "She was found dead in bed 18 days later. She was a healthy, bright, talented young lady who played on the tennis team at Bard College where she would have graduated with honors this year."
- "My daughter developed epilepsy since being vaccinated, and when I share her experience with people, most doubt the connection," Nina Kenney wrote in an E-mail.
- My daughter, in the middle of her series of injections of Gardasil, had a bout of Bell's palsy that paralyzed the right side of her face," Della Smith wrote in this blog comment. "Two months after that, she was diagnosed with Graves's disease. The doctor says an immune reaction to something he can't determine is most likely responsible."
No one knows if these girls were injured by Gardasil or just coincidentally got sick after the vaccination, but certainly their cases need to be thoroughly investigated. And after hearing the stories of several parents who contacted me, I find that one thing is glaringly clear: There is nowhere for them to turn for help besides one another.
In a perfect world, a doctor suspecting a vaccine injury files a medical report with the government's vaccine adverse event reporting system (VAERS) on the patient's behalf; for a serious or complicated case, the doctor would then follow up to determine if the patient's individual case can be investigated by a researcher from the government's clinical immunization safety assessment network. Parents, too, should be able to get some answers directly from the government or vaccine maker to find out what's being done to determine whether the vaccine is the culprit of their child's illness. But, based on my interviews, that's not usually the way the process goes.
Although Merck, manufacturer of Gardasil, has a customer service number for dealing with adverse reactions to Gardasil, "calling Merck's help line was like doing technical support for my computer," says Kenney, whose daughter, Nora, experienced her initial seizure five days after her first Gardasil shot and then had two seizures soon after her second shot. Nora's neurologist told Kenney that her daughter, who is now on antiseizure medication, shouldn't get the third Gardasil shot. While Rick Haupt, Merck's head of the clinical program for Gardasil, tells me that he and his team look at all the reports that come in and "investigate all of those, particularly those that are rare diseases or unusual conditions," Kenney says the woman she dealt with on the phone "couldn't tell me anything, only that a report had been filed on my daughter."
Barbara Olund, whose daughter Alicia developed symptoms of ALS following Gardasil vaccination, tells me she became so frustrated and irate when dealing with Merck's customer service recently that she made threats to harm a company executive. Merck responded by filing a police report, and a cop visited her home in California, warning her not to contact Merck again. I asked Kelley Dougherty, a Merck spokesperson, whether anyone at the company called Olund to get details for a medical report. "We didn't have her number," she says. "I don't believe she's listed, but we sent her a letter." During a follow-up call, Olund said that she had left her number with customer service and that she had just received a letter from Merck a day ago asking for more information on her daughter's condition.
I ask the folks at Merck if perhaps they should be putting the same effort into dealing with dissatisfied Gardasil recipients as they do into their multimillion-dollar Gardasil advertising campaign. "Merck cares very much what our customers think about their experience," says Haupt. "We certainly have heard that there's a potential perception that we're not responding as adequately as we could. At this time, we're taking these concerns very seriously to see if we need to make improvements in that regard."
The truth is, though, that Merck isn't solely to blame for these parents' frustrations. Some doctors refuse to file VAERS reports at all, and sometimes the reports contain incomplete or ambiguous information. Tarsell says she's heard from a few parents via her website who said their doctors don't believe Gardasil could have caused their daughters' medical problems. In Tarsell's case, the physician who filed the VAERS report wrote that the autopsy report found that her daughter died of an inflammation of the spleen caused by a life-threatening virus. While the autopsy did find some minor inflammation of the spleen, the report concluded that the death was due to "cardiac arrest, cause undetermined."
When unaided by vaccine makers or doctors who administer the immunization, parents are largely left on their own to research whether the vaccine could truly be the culprit. Some turn to the government's VAERS database for clues, but that often leads to yet more frustration. Tarsell says she had to file a Freedom of Information Act request to get her daughter's complete VAERS report and found only the sketchiest of details about other girls who died after Gardasil vaccinations. After repeated phone calls to government officials, she's since learned that she could have filled out this form to get her daughter's report without going through the prolonged FOIA process. Still, parents who are searching for others can't see anyone else's full reports.
For now, Tarsell hopes that more parents will find her website and get in touch so they can pool their resources and information. So far, 35 have—including Phil Tetlock, father of Jenny, who died recently from ALS—and have filled out a 10-page questionnaire that includes their daughters' medical histories. And Tarsell says she's heard from parents of seven other girls who, like her daughter, died from unexplained causes after Gardasil vaccination. Just before Jenny's death, Tetlock launched an effort to improve the VAERS database. He is calling on the public to sign his petition here. Check out the video dedicated to Jenny posted on YouTube.