Tuesday, 2 February 2016
62. To ask the Minister for Health if he has recently met with representatives of the Reactions and Effects of Gardasil Resulting in Extreme Trauma, REGRET, group, to discuss available or potential health support services, and other supports for families represented; and if he will make a statement on the matter. [3892/16]
This question relates to the parents who organise a group called REGRET. Almost 200 teenage girls have experienced serious side effects having taken the human papillomavirus HPV vaccine. Has the Minister met with that group recently to discuss what supports might be put in place? While we might debate their origin the problems these young women are experiencing are undoubtedly real and the families need urgent support.
I am aware of claims of an association between HPV vaccination and a number of conditions experienced by a group of young women. The vaccine protects against cervical, penile and anal cancer and helps to prevent genital warts. It appears that some girls first suffered symptoms around the time they received the HPV vaccine, and understandably some parents have connected the vaccine to their daughter’s condition. As the Deputy is aware, in November 2015 the European Medicines Agency, EMA, completed a detailed scientific review of the HPV vaccine which found no evidence of a link between the vaccine and the two conditions examined. On 12 January 2016, the European Commission endorsed the conclusion of the European Medicines Agency that there is no need to change the way HPV vaccines are used or to amend the product information.
However, this does not get away from the fact that these young women are unwell. I want to make it quite clear that anyone who is suffering ill health is eligible to seek medical attention, and to access appropriate health and social care services, irrespective of the cause of their symptoms. The individual nature of the needs of some children may require access to specialist services and they may be different in different cases. The HSE will be in a position to facilitate that access to these services for any children or young adults who may require them.
As Minister I consider meeting any organisation that requests to do so. However, due to busy parliamentary and other business it is not always possible to meet all representative groups. I have been informed that the HSE has met with members of REGRET concerning this issue.
It is important to say that these families are not anti-vaccine crusaders. They had their daughters vaccinated and now their daughters are severely unwell and as the Minister says, the side-effects are real. It is all very well to acknowledge the EMA review of the drug but it only examined it for two side-effects and did not take into account the full range of symptoms that some of the parents have outlined, anything from a leg tumour to chronic fatigue and so on. The problem is that while it is all very well to say they can access health care and support services if they are ill it is not as straightforward as that, particularly when means testing or reliance on private health care come into play. The parents who attended a meeting of the Oireachtas Joint Committee on Health and Children wondered how they would meet their daughters’ medical needs in the years to come. They looked for long-term treatment plans. Families cannot cope with the ongoing need to go to doctors, specialists, never mind hospital stays and medication. They need to explore alternative options for schooling and education because some of these young women cannot get out of bed. They want exemptions for the leaving certificate and all such supports which might not be available. It is much bigger than that. We are on the eve of an election and the parents may have met the HSE but they need urgent assessment and assistance to meet these needs now.
What I said is that their symptoms are real and they are unwell and nobody is suggesting for a second that anyone is making anything up, or that any of the young women is doing so. What I did not say was that they were as a result of a side-effect or that they were caused by this vaccine because there is no epidemiological evidence to support that view. That is a belief not something that is based in evidence or fact, or at least as we understand it.
I remember not that long ago a similar vaccine scare around the measles, mumps and rubella, MMR, vaccine and some people believing that it caused autism because children developed autism at around the same time as they were getting that vaccine. Some may even still believe it. That does not stack up in evidence. The doctor who originally made those claims was struck off for falsifying some of the research. As a result of that parents were scared off giving their children the MMR vaccine, or in some cases, for whatever reasons, decided to give separate vaccines. It is very important that we as parliamentarians are careful not to give credence to something like that happening again. We can keep an open mind on new evidence but we should not give credence to anything that may discourage parents from giving this vaccine to their daughter to prevent her getting cancer.
The question was very carefully worded and asked what support the Minister would give to the young women who we all agree are undoubtedly unwell at the moment. The parents of some of them have had to give up work to care for them. They are just not coping and they want to know what support will be available to them. In some cases, individuals can access support but it is not always there. It will take some time for the scientific community to come down on one side or the other, although at the moment the consensus appears to be that the benefits outweigh the risks. That would be the majority view of the scientific community but it is constantly under review. While that is going on, these parents have given up their jobs to look after their children. They are not getting support and need something different.
The adversarial approach that is so symptomatic of how the HSE deals with all such controversial matters will not be a good model for the families of the hundreds of young women whose parents are not coping. They genuinely feel abandoned and are seriously unwell at the moment.
They may need different supports in different cases. We may actually do them a disservice by treating them as a single group. People are treated based on the diagnosis of the condition they have and not based on what they believe caused it. We may do people a disservice by treating them as a single group. We should be trying to treat them based on their symptoms and diagnosis rather than what they believe the cause to be. That is why I do not want to do anything that would give credence to this. Obviously, I do not know where I will be in the next few weeks but if it would be beneficial to meet me or my officials, should I still be in office in a few weeks' time, to discuss that specifically, I am sure it can be facilitated. However, it would need to be on the basis that such a meeting could not be used in any way to give credence to the view that their symptoms are caused by this vaccine because in doing so, I would do more harm than good.