Conversation with a ‘Gardasil Girl’

Naomi Snell

Gaps in knowledge about Gardasil effects on special populations continue to dog national immunization programs.

Naomi Snell of Melbourne, Australia, had just turned 25 and was a full-time graduate student in journalism, had a job and was running 5 kilometers a day at the time she completed a three-course vaccination of Gardasil in January of 2008. The vaccine is recommended by public health officials in numerous countries for the prevention of human papillomavirus (HPV) which may develop into cervical cancer.

Snell said she felt ill after her first doses but didn’t connect her illness with the vaccine so she completed the three-dose regimen.  

Within weeks of the last dose she had pain and joint inflammation throughout her body. Soon she began losing her balance, had severe seizures and was unable to walk. She was seen by a rheumatologist because her blood tests indicated an auto immune reaction and was eventually referred to a neurologist, who is still treating her. An MRI of her brain revealed demyelination, similar to that associated with multiple sclerosis.

She attributes all of her symptoms to the vaccine. After becoming ill she learned that scores of others have had a bad, and in rare cases, a deadly, reaction to the vaccine. Snell made a video of her experience and co-created a Facebook support page for those who believe they were sickened by the vaccine.

“Since having the vaccine and falling ill I have been forced to defer my full time study in a post graduate journalism degree program. I have also been unable to work full time and have had to take extended periods of unpaid sick leave from my administration job.
 
“I feel as though I am very slowly getting stronger,” says Snell. “However, it is unlikely that I will ever fully recover. Before the vaccine I was running 5kms a day. My writing has also deteriorated since the vaccine.”

Snell wants HPV vaccinations suspended worldwide “until the risks associated with the vaccine have been fully investigated.” She also encourages others to educate themselves about the HPV vaccine. “We need to be empowered to make informed decisions about our own bodies. I have learnt that it is not always beneficial to take what a GP says on face value. The information they give you does not always come from people who have your best interests at heart.”

Grassroots activist and North Dakota parent Malinda M. Weninger said her 21-year-old daughter has been ill for three years since her vaccination. 

“Literally thousands of girls are sick. What is interesting is that there are a lot of girls sick and suffering different effects and they do not relate it to Gardasil. Women have taken presentations to the FDA and they still do not listen,” said Weninger.

In the United States, Australia, Britain and elsewhere, women and parents of young girls who associate illness with the vaccine have been sharing their stories and issuing warnings about its potential risks. In most cases they have suffered indifference from health officals and sometimes have become the targets of blogger-pundits who disingenuously claim that if you have concerns about one vaccine that makes you anti-vaccine.

The FDA and CDC have steadfastly maintained that Gardasil is safe and effective and that its benefits outweigh its risks. The national health agencies in Britain and Australia have taken a similar position.

Only India has suspended Gardasil vaccinations in order to do more research and address other public concerns related to the vaccination program.

A Canadian study recently published in PLoS Medicine found that two-parent, affluent, college-educated couples in British Columbia refused to have their daughters undergo the vaccine when it was offered as a free, school-based program. The parents cited concerns about safety as the leading reason for not allowing their sixth grade daughters to be vaccinated.

A popular view among pundits is that people who worry about HPV vaccine safety are either hysterics or wayward parents doing too much of their own research on the Internet. Paul Offit, MD, an often quoted vaccine expert, said the Canadian study shows that public health officials “have to do a better job getting accurate information about the safety and effectiveness of HPV vaccine to these types of parents.”

Consistently absent from the pro HPV vaccine group’s discussion are three very important facts. First, Gardasil is a commercial product heavily lobbied to governments, marketed and sold for massive profits. According to industry analysts, Gardasil has a $1.5 billion market worldwide. Second, the vaccine has not been tested on special populations, such as those with autoimmune disorders. Third, in the United States, there is no mandatory reporting of adverse effects following the vaccine. According to the FDA, the voluntary reporting system (VAERS) has a major limitation. “There is no proven causal association between the vaccine and the adverse event. The only association is in time, meaning that the adverse event occurred sometime after vaccination. Therefore, we cannot conclude that the events reported to VAERS were caused by the vaccine.”

Therefore, voluntary reporting is not scientific and is almost useless.

The burden of proof falls on those who are ill. Families in New Mexico, and Kansas intend to prove in court that the vaccine harmed their daughters. They have filed lawsuits against the Secretary of Health and Human Services Kathleen Sibelius alleging harm by vaccines.

The lawsuits will be followed worldwide; the vaccine has been approved in 120 countries with Bhutan the latest country to announce nationwide HPV vaccinations using Gardasil.

Most people don’t have the resources for a lengthy and expensive court battle. They just want to get well.

“My GP [general practitioner] told me that it is always hard to prove what caused medical conditions,” said Snell. “My specialist is currently focusing on how to get me better rather than what caused it.”

A clinical trial was proposed in 2008 by Merck, manufacturer of Gardasil, and the University of Chicago to study the safety of Gardasil in 30 females ages 9 to 26 with systemic lupus erythematosus (SLE), specifically, and with autoimmune diseases, connective tissue diseases and immune system diseases in general.

“There are no data on the immunogenicity and safety of Gardasil in immune dysfunction related to SLE itself and the immunosuppression secondary to treatment of SLE might prevent patients with SLE from developing an adequate immune response to the vaccine,” according to the trial description. “Also, theoretically, the vaccine might induce a disease exacerbation or production of new autoantibodies.”

The trial was never launched.

Snell said she and other girls who became ill following vaccination may have had an auto immune disorder but were not aware of it before being vaccinated.

If the vaccine manufacturer and health officials suspect – as suggested in the clinical trial overview – that the vaccine might trigger or have an adverse effect on an existing autoimmune disease, why wasn’t the trial completed and concerns addressed prior to mass vaccinations commenced worldwide? It may be late but it’s not too late to complete such a trial.

And it’s not too late for health agencies to require that people be screened for auto immunities or other suspect conditions before Gardasil vaccinations.

Related:

Gardasil controversy pits real moms vs. actor moms

FDA records link 28 deaths in 2008 to the Gardasil vaccine

Journal reports teenager nearly blinded following vaccination against HPV virus

Public pressure halts Gardasil vaccine trial in India