By Joyce Rubotham @seoighee
Groups and individuals opposing and advocating the HPV vaccine for girls are in entrenched in a battle to win the backing of the public in the medical fight against cervical cancer.
The support group, REGRET represents more than 400 young women who claim to have suffered vaccine damage as a result of the HPV vaccine.
The girls, who were healthy prior to vaccination are now debilitated, many are wheel-chair bound and suffer regular seizures.
Individual advocates of the vaccine accuse REGRET of being extreme and anti-vaccine. Parents of the sick girls claim that their group is regularly the target of online abuse.
One Facebook account, in particular, singles the group out for criticism. The account owner remains anonymous, making it difficult to judge the authenticity of its claims. Members of REGRET suspect it is operated by someone of official status.
Anna Cannon, spokesperson for REGRET said: “We are not an anti-vaccine group, our children were vaccinated.” What these parents want is to be heard and acknowledged. They are calling on the minister for health, Simon Harris to investigate their claims.
Anna Cannon’s daughter has suffered years of pain and illness since receiving the HPV vaccine. Anna says that what is significant about the REGRET girls is that their symptoms are actually listed on Patient Information leaflet of the vaccine manufacturer, Merck.
According to REGRET the patient information leaflet produced by Merck is deliberately withheld from parents by the HSE. Instead the HSE distributes its own pamphlet about the vaccine.
The issue of the Patient Information Leaflet is a contentious one. In October 2015 Senator Paschal Mooney spoke in the Seanad on the subject. He said: “The HSE, in my opinion, are acting disgracefully in that they don’t provide the information leaflet that any one of us, going in to a pharmacy to purchase medication would get… explaining what the medication is, how it’s to be used and what side effects are possible.”
The HSE website gives some information about the vaccine and supplies contact details of local health nurses for further enquires.
Two nurses contacted were unable to confirm if the patient information leaflet produced by Merck will be distributed to parents prior to vaccination. The same nurses will be vaccinating girls in secondary schools across Dublin in the coming months.
Dr Sieneke Hakvoort, the senior medical officer for the HSE North Dublin region, was also unable to clarify the situation in relation to the patient information leaflet.
The Irish Cancer Society advocates the use of HPV vaccine. The organisation is prompt in dealing with enquiries and eager to help with the dissemination of information.
The Society explains that the Gardasil vaccine is used to “protect against two types of two types of Human Papilloma Virus that cause seven in ten of all cervical cancers”.
In a statement on behalf of the Irish Cancer Society Michael McHale, said: “The Irish Cancer Society is concerned that parents need to hear from knowledgeable experts about the vaccine and its safety as they consider giving consent for their daughters to receive this injection.”
The Irish Cancer Society points out that many studies have been conducted to ensure the safety of the vaccine. “The largest of these studies, conducted by the European Medicines Agency, has looked at the rates of illness among over 80 million people who have received over 200 million doses of HPV vaccine and compared the rates of these illnesses with unvaccinated people.
“No difference in the rates of serious illnesses occurring in vaccinated and unvaccinated individuals has been found.”
The issue is further complicated by the withdrawal of the vaccine from the national immunisation program in Japan. Sixty-four women have filed lawsuits against the Japanese government and the manufactures of the vaccine.
The Japanese women claim adverse reactions similar to those reported here in Ireland. Symptoms include widespread pain throughout the body and nerve disorders due to excessive immune responses.
Merck’s information leaflet instructs patients to contact their healthcare provider should they experience certain symptoms. The REGRET girls and their parents did just that. They say that their claims have been mocked, sneered at and ignored by hospital consultants, doctors and by the HSE.
As the vaccination program is rolled out in secondary schools this Autumn many parents will be uncertain about its safety. Did the HPV vaccine cause the REGRET girls to become ill? The truth is that we really don’t know. One thing is certain; the HSE seem quite determined to refrain from any debate on this issue.
Dr Joyce Rubotham (PhD) is a former researcher in Trinity College and a mother.
If you have had a negative experience with HPV, do get in touch via email: firstname.lastname@example.org