Ms Anna Cannon:

I thank Senator Kelleher for his input. We have a lot of families in Cork. One family has two daughters affected by the after-effects of the Gardasil vaccine. I want to address the point of fatigue, as it sounds like it is the key issue for the girls. It is one of many side-effects the girls are experiencing.

As regards the question on interacting with the NIO and the HSE, I will give some clear examples. I have a list of my daughter's side-effects - or what I believe are side-effects - from Gardasil: severe headaches, which are worst morning and evening; hot flushes of the face; nausea; lack of appetite; balance issues; dizzy spells; clotted nose bleeds, mainly in the night-time; lockjaw; extreme fatigue; low blood pressure; and marks on upper chest and thighs, very similar to other girls in the group. She also contracted pancreatitis, which is a life-threatening condition. The doctor had never seen that in a girl of her age group in over 50 years of practice. This is possibly chronic. Therefore, we are not only talking about fatigue here, we are also talking about many other issues. Most of our girls have been tested for glandular fever. It would be one of the first blood tests that are assessed for antibodies.

When my doctor wrote to the NIO and voiced my concerns to it, she said she had a 17-year-old girl with multiple symptoms, including severe headaches, myalgia, pancreatitis and loss of energy, etc. The reply from the NIO included a statement to the effect that:

The HPV vaccine has been licensed since 2006 and, to date, no causal link has been established between Gardasil, the HPV vaccine used, and chronic headaches, myalgia, loss of energy, low mood and pancreatitis. Therefore I would refer this girl, as you would normally refer any other patient who presents with the symptoms you describe.

That was the response. There were no questions and no contact with me as a parent. This would reflect the 130 girls in the Regret group, so we are not experiencing a great response, either from the HSE or our doctors. We are lucky in that we have finally found a few GPs who are supporting us and who are linking this with the Gardasil vaccine. In my statement, I said there was a four-year trial by Merck. One in 40 of those who took part experienced a serious adverse event and one in 30 experienced a new autoimmune condition.

I thank Deputy Ó Caoláin for his support. Of course, the statement was insulting. We have exhausted every medical avenue for these girls. We have been to GP clinics, hospitals and neurologists but they are not recognising this long list of side-effects that are mirrored between 130 girls in our group alone and also internationally. They are, in fact, stated on the patient information leaflets, PIL, so I do not see why a doctor cannot connect with or acknowledge a long list of symptoms that are unrelated to each other, but directly connected to the PIL.

As regards the protection of the HPV vaccine, we know it only covers two strands, but we also know that it is not proven to last more than eight years. These girls received the vaccine at 12 years of age. Many of them are so sick that they will not have a boyfriend for the foreseeable future, so by the time they reach an age at which they are sexually active, the benefits of this vaccine will be gone.

We need to look at how the benefits are misrepresented, as well as the risks, in terms of the information that parents are receiving before signing consent forms.

On the HSE's own website, medicines.ie, a clause from the Guide to Professional Conduct and Ethics for Registered Medical Practitioners, 7th edition, 2009, section 35.2, states:

As part of the informed consent process, patients must receive sufficient information, in a way that they can understand, to enable them to exercise their right to make informed decisions about their care. This refers to the disclosure of all significant risks or substantial risks of grave adverse consequences.

How is it that I, as a parent, cannot understand the following paragraph in the patient information leaflet?

As with other vaccines, side effects that have been reported during general use include: swollen glands (neck, armpit, or groin); muscle weakness, abnormal sensations, tingling in the arms, legs and upper body, or confusion (Guillain-Barré Syndrome, Acute disseminated encephalomyelitis) [I do not understand that part]; dizziness, vomiting, joint pain, aching muscles, unusual tiredness or weakness, chills, generally feeling unwell, bleeding or bruising more easily than normal [etc.] ...

It is clear and simple what are the side-effects. I do not see why we, as parents, do not have the basic human right to understand the full risks of this vaccine before signing the consent form for 12 year old kids.