Posted on Leave a comment

The HPV Debate: Trust, Transparency and Torment

Warning: This is a long blog post!

I am nervous writing about this topic, especially because I work in the healthcare arena. I am genuinely concerned that I will be accused of spreading “false information” or worse, called an “anti-vaxxer”. Isn’t it sad that I feel so worried about simply expressing my views?

But that is the reality of where the “debate” regarding the HPV vaccination is headed.

As a mother to three daughters, I feel it important that I be given an opportunity to express my personal opinion on the matter, and to find out what others are thinking too – in a safe, non-judgmental space. All I ask is as you read this, remember that this blog is what this is – my personal opinion. To be clear: I am NOT anti-vaccine, nor am I against the HPV vaccine itself, though I have not given it to my daughters – YET.

And I really emphasise the words MY daughters and YET. I will explain why, further in this article.

So, for the last few years there has been an ongoing global discussion about the safety and efficacy of the HPV vaccination which is given to teenage girls in schools. In the last few months however, I have noticed that this debate seems to have taken a rather detrimental turn. One thing I have found most disturbing is the aggressiveness people are showing towards one another when they discuss this topic online, or otherwise. Go to any social media post about the HPV vaccination and you will see it for yourselves. These comments below, for example, taken from the HSE’s HPV Vaccination Facebook page, are not unique.

Guilt tripping seems to be rife.

Parents are calling other parents who DON’T give the vaccination, irresponsible or insinuating they don’t “love” their children. Parents are calling parents who DO give it the same. People are telling other people who don’t have children to not get involved in the discussion as it’s not their place. Journalists are competing with other journalists to share their opinions and “facts”. Public bodies and organisations are doing the same.

Politicians are being told to stay out of it.

Words such as scaremongering, ignorance or emotional terrorism are being used.

Yes, there is terror – parents are terrified of their children getting cancer and/or their children suffering from adverse reactions from trying to prevent it. Many parents are tormented into trying to make the right decision for their children.

But who am I to talk about this subject?

First and foremost, much like every parent, I am a person who will always aim to do the best for my children to ensure that they are happy, safe and healthy. Secondly, I am a patient and carer advocate, researcher and social entrepreneur. Everything I do well in my work in healthcare boils down to one simple thing: two-way open-minded communication. I have years of experience in market research and facilitating focus groups, with an aim to co-design solutions for our health system. The core of my own project MediStori has always been built on the foundations of working with all stakeholders to ensure their opinions and thoughts were inputted into this work, and most importantly, that these opinions, be they positive or negative, were valued. MediStori was designed and developed with over 500 patients, carers and health professionals together over a period of four years. I enrolled external researchers to oversee our national research to ensure my personal bias would not step in the way.

Who was I, little old Olive, to determine what it was that our health system, health professionals, patients or carers needed?

We changed the product over 19 times until we had a solution that the majority were happy with. We preferred when people gave constructive criticism than just nodded their heads and said they agreed with everything we said. How would we learn and make the product the best it could be, if we didn’t know the truth from those who would be using or promoting it? Imagine if we told all the people in our focus groups that their opinions were wrong, and all we did was aim to convince them that the product was perfect as is, just so we could get it out there?

Imagine if I made bold definitive statements, or half truths, just to get initial buy in? And then later added in the small print; the actual facts?

Where would my ethics lie? And when the product reached mass market, would it actually work if it didn’t suit our customers and end-users needs?

Now I am not here to discuss MY business, I am simply stating this because I am not unique in taking this approach. In the business world, customer experience is key. If a customer has a complaint, management know they should always try to ensure they make amends to right any wrong doing. Additionally, they aim to learn from the experience to ensure it doesn’t happen again to anyone else. But what I am consistently finding in our society, especially when it comes to healthcare, is that no-one really seems to be willing to take this approach – instead it seems to be a constant battle of the wills.

And I really, really want that to change. Especially when it comes to the HPV “debate”.

Below, I am going to outline my thoughts on the following topics:

1) Why I ask questions about the HPV vaccination before giving it my daughters, and why I feel I should be allowed to ask these questions without being accused of wrong doing, or worse, be accused of being a bad parent; ignorant or scaremongering. 

2) I am also going to analyse the information available about the HPV vaccination that is given to me as a parent before signing consent – just as if I am in a focus group and asked to give feedback on same.

3) I will also share my thoughts on why I feel the manner of the “debate” needs to change.

But before I do so, I think it’s important for people to know the background of the Irish HPV programme and discussions that have taken place.

In summary:

  • Since 2010 the HSE have promoted the HPV vaccination for 12/13 year old girls to take, with an aim to prevent them catching some HPV viruses, which could potentially lead to some cervical cancers.
  • Parents were given a leaflet from the HSE informing them of some of the potential side effects; statistics/data on cervical cancer/HPV; the benefits of the vaccination; plus other relative information, prior to consent.
  • This vaccination was administered to girls in schools by health providers, after consent was given by their parents/guardians. It was also administered at the same time as other standard vaccinations.
  • Since the start of the vaccination programme, a number of girls were reported to have suffered from various reactions and symptoms, of which they state they did not have prior to the vaccination; and of which they state happened within a short time of receiving the vaccinations. Symptoms reported ranged from mild to severe. Many of the symptoms reported were said to not be alleviated over a short time period.
  • Concerned parents and guardians contacted various health professionals and organisations to find the cause for their daughters symptoms and to get an accurate diagnosis so they could treat their children appropriately.
  • The HPRA (Health Product Regulatory Authority) has received 1,099 reports of possible adverse reactions from a total of almost 690,000 doses administered, and of which 230,000 girls received the full course.*
  • Since receiving the vaccination, “648 cases were considered serious, meaning they included circumstances where patients required intervention, such as a review by their GP, treatment for their symptoms, or both.” Credit: Irish Times.
  • Many of these girls have come forward stating they now suffer from complex chronic conditions – of which no causation has yet been found. 
  • Organisations, such as Regret, asked the HSE and Department of Health for an independent review/ clinical trial for these girls to see if the vaccination could have caused their illnesses, or if it was caused by other factors.
  • No independent clinical trials have been done to date with these girls.
  • These organisations also asked the HSE why the detailed patient information leaflet [PIL] provided by the drug company [whom created the vaccination] was not included in the information pack given to parents by the HSE, prior to them giving consent.
  • This PIL is still not included in the HSE information pack to date.
* Please note: 690,000 doses does not equate to the number of girls who received vaccinations. Read this article in The Irish Times; 12th September 2017.

To date, the concerns of the organisations, parents and children still remain – as do the concerns of the HSE regarding the steep decline in the uptake of these vaccinations. But instead of an open minded conversation to get to the bottom of the concerns for both parties, it seems that all engagement has ceased and an all out war is breaking loose.

I was lucky when my daughters received the forms for consent – I had a chance to pause and think before making any decision.

This was because I was one of the first women in the country to receive the vaccination over ten years ago, so I had personal experience on my side. Remember while reading this, I chose to have the vaccination myself – and pay for it too – therefore I am NOT anti-vaccine, nor anti-HPV vaccine. Like I did then, I now decided to access as much information available online to see if new evidence had emerged. And what did I learn? I found that much of the research out there was not written in a manner in which non-health professionals or non-researchers would find easy to understand, and this in itself caused more confusion. Likewise, I had to filter through countless online documents to find information based on facts, rather than opinion. As I did so, I came to the realisation that many parents did not have the time to do this same level of research in the time-frame from them being given the information pack, and consenting to the vaccine.

Two documents which were relatively easy for me to understand though were 1) the HSE’s hard copy information leaflet which is given to parents prior to consent and 2) the drug companies own hard copy patient information leaflet [PIL] about the vaccine – which is not given to parents prior to consent. [A PIL is the little leaflet which is given with all drugs and medications that are bought in pharmacies – it includes information about the drugs such as ingredients, risks, benefits, doses etc.]

So I decided to compare both of these documents to see if they included the same information. Were the parents and organisations right in requesting that the PIL should be included in the information pack? I wanted to find this out. I also knew I could not agree to give the vaccination to my daughters without as much knowledge as possible under my belt.

Below, I have shared my thoughts on both leaflets, just to simply highlight one of the most important topics in this debate: Informed Consent:

Informed consent is permission granted in FULL knowledge of the possible consequences, typically that which is given by a patient to a doctor for treatment of the possible RISKS and BENEFITS.

I wanted to see if I was given FULL knowledge of the possible RISKS and BENEFITS before signing consent for the vaccine; remembering that the only information I was handed was the leaflet from the HSE. Please note: my observations below do NOT relate to the actual research on the vaccine, but instead, the information provided to me to help me make the right decision. Throughout this process, I did however feel the need to investigate some of the statements made so there are other links included in this blog to help me clarify my thoughts.

These are the links to both documents of which I analysed: HSE Leaflet  (HSE)  Drug Company Leaflet [PIL] (PIL)

Observation 1)

HSE: There is no printed PIL content in the information pack given by the HSE, however there is a QR code included to access the information.

PIL States: “Read all of this leaflet carefully before you or your child are vaccinated.”

My thoughts: The manufacturers of the vaccine recommend that the vaccine PIL should be read in full carefully prior to vaccination, however, the HSE do not provide this in printed format, nor do they state that parents should read it prior to consent. Actually the HSE specifically instructs local health authorities NOT to include a PIL for the vaccine  for parents, as seen here. However, on the back of the HSE leaflet they have included a link to the HPRA (Health Product Regulatory Authority) and a separate QR code to link to the PIL information. I wondered why the HSE did not just put in the direct worded link to the PIL instead of parents having to 1) try to find it on the HPRA website themselves 2) download the QR app to open the link, or 3) try to figure out what a QR code was? Why could a printed version just not be added into the pack altogether? By not adding it in, I feel it made it harder for parents to do their research, thus meaning they may choose not to do so at all. 

Observation 2)

  • HSE States: “This leaflet contains factual information to answer your questions. Please read it and then fill in the enclosed consent form.”
  • PIL States: “Read all of this leaflet carefully before you or your child are vaccinated. Keep this leaflet. You may need to read it again. If you have any further questions, please ask your doctor or pharmacist.”

My thoughts: I find the HSE leaflet is telling the parent what they should do rather than giving them more options before agreeing to consenting, unlike that stated in the PIL. I think it important that parents/patients are not told what to do, but rather be given options, time and space to make important decisions. While the leaflet contains factual information, it is also quite emotive – unlike the PIL.

Observation 3)

  • HSE States: “HPV vaccine protects against cervical cancer”. 
  • PIL States: “Gardasil may not fully protect 100% of those who get the vaccine.” “Nor is it effective for all cervical cancers.”

My thoughts: I know in my business I can not claim anything works unless it is based on evidence. It is interesting that the HSE state on their front cover that it “protects against cervical cancer” whereas the PIL claims it may not give 100% protection. Why are definitive statements such as above put on the front cover instead of using the words “may protect”? The statements inside this same leaflet, then say that it protects girls from 7/10 cervical cancers, not all cervical cancers – so why is this not on the front cover too – and isn’t this contradictory?  I do feel the facts need to be outlined from the outset, to ensure parents are truly aware of what the vaccination can/cannot do, instead of aiming to convince them that it WILL do its job, before they even read the material inside. I feel the leaflet needs to be clear in what the vaccine’s main aim is: to prevent 4 out of 100 HPV diseases, which could prevent 7/10 cervical cancers. Many businesses use overarching messaging in marketing promotion strategies but they nearly always cover themselves by adding an asterix or star beside it as a disclosure, so customers can read more, but only if they WANT to.

E.G. You will lose weight if you take this pill * SMALL PRINT: *This pill will work if you exercise and drink 8 glasses of water a day also.

Many people just do not read the small print. I know this because of the many of the comments online from people who are consenting to the vaccine. They are adamant that the vaccine will prevent them from getting cancer, and state that those who don’t give it to their daughters are irresponsible. This leads to my next observation.

Observation 4)

  • HSE States: “HPV rates have fallen by over 90% because 9 out of 10 girls get the HPV vaccine” 
  • PIL: There is no information related to this statement included in the PIL.

My thoughts: The HSE’s statistic above relates to the falling rates of the virus HPVnot cervical cancer. This is where confusion can occur when parents are trying to make a decision – a clear division needs to be made between the two diseases.  Many people online keep talking about preventing cancer – but not HPV which is what the vaccine is actually for.

Statistics can also be really confusing. I am no genius at maths, but I always give it a go – especially when trying to make important decisions. I wanted to know more about the statistics relating to the benefits and risks and so this is where I sought out some more information.

  • THE HPRA states that 690,000 doses were given since 2010, with 230,000 girls receiving all doses from the vaccination.  This statement in itself is confusing because is this “690,000” referring to “girls who were vaccinated” or actual “doses administered” – keeping in mind that girls initially received three doses, and now receive two doses of the vaccine? Either way there was a total of 1099 reported adverse reactions since 2010. Taking the 230,000 girls who received all doses (as I am unsure about the 690,000 figure), does this not equate to a 0.48% chance of having a reaction (ranging from mild to severe)? And going one step further, from those 1099 reports, 648 were reported as serious (59%). This gives a 0.28% chance of having a serious reaction, does it not? 
  • In 2016 there was an estimated population of 2.5 million females in Ireland aged 0 – 65 plus. The HSE states that approximately 300 women in Ireland each year will get cervical cancer. The main age groups for getting cervical cancer are ages 25 – 65+,  equating to an estimated 1.7 million women. Using the same time span since the vaccination was released (2010 – 2017 = 7 years) I am using this as a baseline to calculate the risks for women of this age group for getting cervical cancer over the same period of time. So if there is an estimated 300 cases of cervical cancer each year this should mean that there is an estimated 2,100 cases over a seven year time span. If 2,100 cases are found in a population of 1.7 million women does this not present a 0.12% risk of them getting cervical cancer?

Correct me if I am wrong in my maths – but do you see the lengths I go to just to be able to weigh up the risks and benefits of giving the vaccination? I couldn’t even figure out the statistics given in relation to the number of doses administered and the number of girls who received it. No parent should have to try to figure this out. I still haven’t figured it out, so please don’t go on my maths to inform your decision.

These statistics should be made very clear in the HSE information leaflet and in their campaigns, if informed consent is to play a part in it. 

I also did some more research on the topic of cervical cancer itself – not HPV – and what I found is in the US they have a had a steady decrease of 2% per year of deaths caused by actual cervical cancer. “Deaths from cervical cancer in the United States continue to decline by approximately 2 percent a year. This decline is primarily due to the widespread use of the Pap test to detect cervical abnormalities and allow for early treatment.”

They do not include any evidence that the vaccine has played a role in this. This now leads to my next observation.

Observation 5)

  • HSE States: “While the vaccine protects against 7 out of 10 cervical cancers, it is still important for girls to have regular smear tests when they are adults.”
  • PIL States: Vaccination is not a substitute for routine cervical screening. You should continue to follow your doctor’s advice on cervical smear/Pap tests and preventative and protective measures.”

My thoughts: While both leaflets promote screening, the HSE states: “It is still important for girls to have regular smear tests when they are adults”. Why do girls have to wait until they are adults for screening? I may sound stupid in asking this, but I am completely genuine in my query. If there is a 2% decline in deaths caused by cervical cancer annually in the US alone primarily due to screening, then why wait until they are adults? If the risks of getting cervical cancer are so low under the age of 25 as stated by the Irish Cancer Society  then why are teenagers being vaccinated so young? Why can’t they wait until they are 18 so they can consent themselves? Furthermore, the statement “protects against 7 out of 10 cervical cancers” implies the possibility that the vaccination may not be 100% effective in all cases which contradicts the HSE’s other definitive statement in the leaflet that the “vaccine protects girls from developing cervical cancer when they are adults” as seen below in my next observation.

Observation 6)

  • HSE States: “The HPV vaccine protects girls from developing cervical cancer when they are adults.”
  • PIL States: “The duration of protection is currently unknown. Longer term follow-up studies are ongoing to see if a further booster is required…”

My thoughts: It would seem by giving my girls this vaccination based solely on the information provided by the HSE leaflet that my children would not get cervical cancer when they are adults, but the PIL differs in this regard: “the duration of protection is currently unknown”.  Again, I find the definitive statements in the HSE information leaflet somewhat misleading. I would be genuinely afraid that women may not feel the need to get smear tests because they had the vaccination with a belief they were safe. A decrease in the uptake of smear tests, I feel, would have a very negative impact on the positive work that has already been done.

Observation 7)

  • HSE States: The HSE are offering the vaccination to girls in first year because the vaccine works best when given at this age”.
  • PIL States: “Gardasil is intended for adolescents and adults from 9 years of age onwards.”

My thoughts: There does not seem to be any evidence available in the leaflet which shows the vaccine works best when given at this age – and the PIL only states it is intended from 9 years old onwards. The only explanation on the HSE HPV website  in relation to age is that the vaccine is given to teenagers in schools because “there is scientific evidence that vaccine uptake is higher especially amongst teenagers.(May 2017). Data from the UK found that immunisation through a school based programme achieved an uptake rate of 80% compared to 60% from GPs.” I find it interesting that they do not state the medical reason they give it at this age.

“Increased uptake” does not equal to “the vaccine works best when given at this age”. I would like to see more evidence relating to this statement.

Observation 8)

  • HSE States: ‘There are no long term side effects caused by the HPV vaccine’. 
  • PIL States: “The duration of protection is currently unknown. Longer term follow-up studies are ongoing…”

My thoughts: In 2010, at the start of the vaccine programme, Dr Kevin Kelleher, Head of Health Protection with the HSE said: “The clear impact of the programme in the prevention of cervical cancer will most likely be seen in 20 to 30 years.” Impact can be both negative and positive and, in my opinion, if it will take 20-30 years for beneficial evidence to emerge then does not apply to long term side effects too? Additionally, most recent studies as highlighted in The Journal’s Fact Checker have shown that after 9 years from administration of the drug there is no evidence of  cervical cancer, which is great news for women who received the vaccination. But it is important to note that if girls at the ages of 12 up to the ages of 24 are given this vaccination then just 9 years later it still only brings them to a maximum age of 33 – meaning they are still outside the highest risk age groups of 35 years plus.  I would like to see what time frames constituents as “long term” in clinical trials  and would also like to see more evidence on the benefits and side effects within this timeline. Furthermore, an audit of the HSE leaflet against 6 other countries HPV leaflets was performed in June 2017 and it found that “The Irish leaflet is also the only one to explicitly state that there are no long term effects caused by the HPV vaccine…[yet,] there is no reference to long term sequelae in any of the other publications.”

So why is it stated in the HSE leaflet that there are no long term side effects but is not stated in other international leaflets?

I might sound like I am nit picking, but these are genuine concerns for me. I do not like to feel confused. I particularly don’t like it when I have to question a “factual” medical document. Either way, all of this all leads to my most important observations below 1) possible adverse reactions 2) when/when not to give the vaccination 3) interactions with other drugs/vaccinations.

Observation 9)

HSE States: Side effects that can happen, but pass in a day or two include:

• Occasionally girls faint after getting any injection. Girls will be advised to sit down for 15 minutes after vaccination which helps prevent fainting.
• 1 in 10 girls will have pain, swelling and redness at the injection site and/or headache.
• 1 in 100 girls will have nausea, pain in the vaccinated arm and mild fever. You can give her paracetamol or ibuprofen to ease any pain.
• Between 1 in 1000 and 1 in 10,000 girls will get an itchy rash or hives.
• Between 1 in 10,000 and 1 in 100,000 girls will have wheezing (bronchospasm).
• 1 in 1 million girls will have a serious allergic reaction.

PIL States: Like all vaccines and medicines, Gardasil can cause side effects, although not everybody gets them. The following side effects can be seen after the use of Gardasil:

  • Very commonly (more than 1 in 10 patients), side effects found at the injection site include: pain, swelling and redness. Headache was also seen.
  • Commonly (more than 1 in 100 patients), side effects found at the injection site include: bruising, itching, pain in extremity. Fever and nausea have also been reported.
  • Rarely (less than 1 in 1000 patients): hives (urticaria).
  • Very rarely (less than 1 in 10,000 patients), difficulty breathing (bronchospasm) has been reported.

Side effects that have been reported during marketed use include:

  • Fainting, sometimes accompanied by shaking or stiffening, has been reported. Although fainting episodes are uncommon, patients should be observed for 15 minutes after they receive HPV vaccine.
  • Allergic reactions that may include difficulty breathing, wheezing (bronchospasm), hives and rash have been reported. Some of these reactions have been severe.

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); dizziness, vomiting, joint pain, aching muscles, unusual tiredness or weakness, chills, generally feeling unwell, bleeding or bruising more easily than normal, and skin infection at the injection site.

My thoughts: There are many similiar side effects outlined in both leaflets but the main difference is that the HSE leaflet does not include the reported side effects during marketed and general use. This is extremely important to me, as these are valid accounts from end-users that have been reported to either the HPRA (or similiar bodies) or to the drug company itself. It is widely known that not everybody will report adverse reactions, and for those that do, it is often a lengthy process. I feel those reports are as valid as the proven side effects. No independent study in Ireland has yet been done on the girls who reported their symptoms, therefore how can the HSE leaflet state that there are no long term side effects? What’s more confusing is that the HSE leaflet changes its own definitive statement in the paragraph section from: “There are no long term side effects” to “There are no known long term side effects”. These are two completely different statements. Furthermore, the HSE leaflet does not include the side effects of taking the HPV vaccine with other vaccinations, as seen below in the PIL:

Observation 10)

  • HSE:  “The HPV vaccine can be given at the same time as other vaccines such as Tdap (tetanus, diphtheria and whooping cough/ pertussis vaccine) and MenC (meningococcal vaccine). If you give consent for these vaccines, girls will receive one vaccine in each arm at each visit.”
  • PIL: “When Gardasil was given with a combined diphtheria, tetanus, pertussis [acellular, component] and poliomyelitis [inactivated] booster vaccine during the same visit, there was more headache and injection-site swelling.”

My thoughts: Why are the side effects from administrations of multiple vaccinations given at the same time not included in the HSE leaflet? Also, why are the ingredients of the vaccination not in the HSE leaflet?

Observation 11)

  • HSE: Girls should not receive the vaccine if they:
    • have had a very severe reaction (anaphylaxis) to a previous HPV vaccine
    • are pregnant.
    • Please let us know if your daughter has an illness or condition that increases her risk of bleeding. You should delay your daughter getting the HPV vaccine if she is ill with a high fever.
  • PIL: Talk to your doctor, pharmacist or nurse before vaccination if your child:
    • has a bleeding disorder (a disease that makes you bleed more than normal), for example haemophilia
    • has a weakened immune system, for example due to a genetic defect, HIV infection or medicines that affect the immune system
  • Gardasil may not have an optimal effect if used with medicines that suppress the immune system.
  • Please tell your doctor or pharmacist if you or your child are taking or have taken recently any other medicines, including medicines obtained without a prescription.
  • If you are pregnant or breast-feeding, think you may be pregnant or are planning to have a baby, ask your doctor for advice before taking this medicine. Gardasil may be given to women who are breast-feeding or intend to breast-feed.
  • No studies on the effects on the ability to drive and use machines have been performed.

My thoughts: My three daughters all have weakened immune systems and one has been on  a serious medication which suppressed her immune system i.e. Methotrexate. This drug was not for a bleeding disorder. The HSE leaflet does not state anything about talking to health professionals if my daughters have weakened immune systems or are on medications which suppress same, which are not for bleeding disorders. Why is this not in the HSE information leaflet?

My Overall Conclusion:

It is this last observation in particular which leads me to disclosing my primary reason for not giving the vaccination to my daughters – YET.

Did the HSE information leaflet inform my decision? Yes, and no. I never want my girls to get cancer and so I feel any programme which aims to prevent this, is a good thing. Learning the difference between HPV and cervical cancer is also a good thing to note. However, if I had not read the PIL also, would I have known to tell anyone that my daughters had compromised immune systems, not related to blood disorders? Would a health professional have known not to give the vaccination based on my daughters’ conditions or medications, or would they presume it was only relative to bleeding disorders? Would I have known the vaccine may not have optimal effect if they took it while on immunosuppressant drugs?

I am also not giving it to them YET because I feel from doing this research that there is not enough evidence given to me by the HSE leaflet to show why it is given at the ages of 12 or 13. I really shouldn’t have to research this evidence myself – and as I said before many parents just do not have the time to do this. I do know that it is a primary responsibility for me to educate my daughters on sexual health and ensure they get smear tests as soon as they are sexually active – even if I have to pay privately for them, as they are not offered for free to women under the age of 25 in Ireland. I also know that HPV can be contracted without having sexual intercourse (e.g. oral sex, contact with genitals etc.) and this is why it is important for me to educate my daughters on reducing their risks of catching any STI’s, not just HPV. I would like my girls to be able to make a decision for themselves when they are 18 or older about whether they want the vaccination or not. This is only seven years away for my youngest – three years for my oldest – and considering there was no vaccination at all seven years ago in Ireland, I am okay with waiting that little bit longer.

By then, hopefully more independent long term evidence of both the benefits and risks will emerge to help them inform their decision.

By then, hopefully, their own medical conditions will have eased off too.

By then, hopefully the information provided for informed consent will be based solely on facts.

And that is my choice as a parent, for MY children. Not for your children, but for mine. I simply cannot risk adding any more possible health issues to what they have already. Does it make me a bad parent? Absolutely not. If anything, it is the complete opposite. I love my daughters with all my heart and will always do what I feel is best, using my knowledge AND gut instinct as a mom. 

Does it mean I am advocating or telling other parents to wait and not give it – absolutely not.

If a parent chooses to give the vaccine to their daughters now are they bad parents? Absolutely not.

We all care about the same thing – ensuring our children our happy, safe and healthy.

Any drug or programme that could potentially save lives is a good thing. I simply did this comparative research because I wanted to see if I was given FULL knowledge of the possible RISKS and BENEFITS before signing consent for the vaccine; remembering that the only printed information I was given was the leaflet from the HSE. I wanted others to know what was in both documents too, so they could also make informed decisions.

And these are my views based on this research:

  • I feel there was adequate information and images to educate people on HPV and cervical cancer in the HSE leaflet.
  • I feel the HSE leaflet was easy to read, from a literacy point of view.
  • I feel the HSE leaflet did promote smear tests as a preventative measure.
  • I feel the HSE did add appropriate links and contacts to other information for parents to look into.
  • I do not feel the format in which the additional information provided through links and QR codes were appropriate tools for parents.
  • I do not feel the HSE leaflet advocated enough the importance of reading the PIL prior to consent.
  • I do not feel there was enough information in the leaflet regarding the possible proven and reported side effects girls could experience.
  • I do not feel there was enough information given in relation to the interactions of other medications with the vaccine.
  • I do not feel there was enough information relating to weakened immune systems, other than blood disorders.
  • I do not feel there was enough information relating to further side effects when the HPV vaccine was given with other vaccinations.
  • I was not convinced from the information in the HSE leaflet (or website) that 12/13 years of age was the right age for the vaccine.
  • I feel the style and tone of language used in the HSE leaflet was emotive and some statements were somewhat contradictory and confusing.
  • I feel a list of ingredients of the vaccination should be put in the HSE information leaflet.
  • I feel the PIL should be given in printed format to parents along with the HSE leaflet.

Am I wrong in outlining my feedback about the information pack? I don’t think so. If I were part of a focus group, would this not be expected of me?

I do not feel I was given the full facts in the HSE leaflet to help inform my decision to give consent – or to even discuss it further with my health professional. It actually had the opposite effect. I read the PIL because I didn’t fully trust the information leaflet after reading it. I feel if the PIL was included in the information pack in printed format, maybe there would be a higher uptake of the vaccine – so as people would be able to consent with full knowledge – and trust what is being promoted to them.

From what I can see, much of the heated arguments online are actually related to this – trust and transparency. So many links to “research” are posted online by the public that it just becomes mind-boggling and overwhelming. Parents simply want answers as to why their children are sick since the vaccination. Other parents want to know of all the potential risks and long term evidence on its efficacy before giving it. Others are happy to give consent based on the information provided to them at the point of care.

Nobody should feel tormented or pushed into making decisions about their children. 

And finally, I just wanted  to add that I personally hate “stats and numbers” when it comes to patient safety. Every single percentage equates to at least one person – one human being. Should we not be aiming for 100%, all the time?

Taken from The Irish Times Facebook Page

For every percentage of persons whom suffered an adverse reaction, remember they are real people, with real experiences – they are not just numbers – and are just as important as the 300 women who may sadly get cancer.

Living with a chronic condition can impact on a persons whole life; from education and employment to relationships and mental health. Should they not be given as much help to overcome their situations as those who unfortunately were diagnosed with cancer too? We all have a role to play when it comes to our health and well-being. One of the toughest jobs in the world is being a parent, but it is made even harder if our children are unwell. It is absolutely okay to ask questions regarding their health and to ensure we protect and care for our children to the best of our ability. Children who now suffer with chronic conditions since receiving the vaccination should not be name called – they should be helped.

No parent should call out another for “not loving their children” simply because they differ in choices or opinion. And if anything comes from this blog, that is my key message – we all need to start working together, not against one another.

Remember again that this blog is what this is – my personal opinion. 

And whether you vaccinate or not, I will not judge you. All I ask is that you don’t judge others either.