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Cervical cancer vaccine - Japan no longer recommends because of side effects concern

(137 Posts)
Crumbledwalnuts Tue 18-Jun-13 06:46:09

there are quite a lot of different places this story is written, this is one of them

It's not being withdrawn but the government isn't recommending it any more. At least for now, while it investigates.

bumbleymummy Tue 18-Jun-13 09:09:49

Interesting...I wonder which one they use.

HormonalHousewife Tue 18-Jun-13 09:13:01

interesting...my initial thoughts were that they would have used a less concentrated dosage but I dont think thats possible with a vaccine ??

TanteRose Tue 18-Jun-13 09:26:41

they use both Cervarix and Gardasil here

I think that you can choose which one to use

The girl who is now in a wheelchair was vaccinated with Cervarix. Her mum is behind a campaign to ban the vaccine sad

very timely for me as my DD is 15 and was due to be vaccinated in the next few months.

will hold off for now

Crumbledwalnuts Tue 18-Jun-13 23:02:54

Terrible isn't it. Also pretty bad that it's not well-known. Mainstream media running scared I think.

Crumbledwalnuts Thu 20-Jun-13 06:34:37

Bump

WouldBeHarrietVane Thu 20-Jun-13 06:41:20

Brave of them to announce they are suspending and rechecking.

Bunbaker Thu 20-Jun-13 06:46:01

DD has had the vaccines. I did a lot of research and spoke to her consultant and our GP (she has joint problems) and they all advised me to go ahead with it. So far she has been fine.

Crumbledwalnuts Thu 20-Jun-13 07:02:03

I'm glad your daughter is fine, BB. I researched too, and decided not to go ahead. I'm very happy with my choice, though I think it's quite unusual in the UK.

forevergreek Thu 20-Jun-13 07:09:59

My sister had the vaccine then has a stoke 2 days later. Could be a coincidence but unlikely

Bunbaker Thu 20-Jun-13 07:11:14

I admit that I had major reservations about going ahead with it and wouldn't dream of criticising anyone who decided not to. I guess it is one of those things where it is easier to minimise the risks of HPV than it is with the diseases the MMR vaccinates against.

Crumbledwalnuts Thu 20-Jun-13 07:12:12

God, forever, I'm so sorry for you and your sister.

Yes Bunbaker I'm planning to pay for private smear tests for my duaghter until she's 25.

Bunbaker Thu 20-Jun-13 07:12:14

I hope your sister made a full recovery forevergreek. What a dreadful thing to happen.

forevergreek Thu 20-Jun-13 07:31:12

She has pretty much ( 18 months on), but used a wheelchair until around Easter this year. Still needs sometimes.

I'm also all for mmr etc but this just doesn't seem to have had the research as a very new idea / vaccine

HormonalHousewife Thu 20-Jun-13 09:19:51

Gosh forever thats terribly sad. Glad to hear she is improving. I guess we will never know exactly what caused the stroke but it must be impossible not to seperate the two.

How old is she ?

Generally I am very pro vaccinations but chose not to go ahead with this for my 16 year old daughter at the moment.

CatherinaJTV Thu 20-Jun-13 10:51:11

Forevergreek - I am glad your sister is better. What do the doctors say what caused the stroke?

forevergreek Thu 20-Jun-13 11:57:19

She is 13. They aren't sure but have had similar cases with others so haven't excluded. Like you say you can't really say yes or no for sure, but my parents wish they had researched as just assumed it was very safe ( as I never had as wasn't around years ago- big age gap between us)

CatherinaJTV Thu 20-Jun-13 14:46:42

I was just interested in which alternative explanations the docs would have come up with. Paediatric stroke is not exactly a frequent occurrence (background levels are about 0.8 in 10'000) and risk factors could be worth following up (like clotting disorders, vessel malformations). Most cases of paediatric stroke I know of (4 of 5) were a consequence of chicken pox infection - the other child had a heart malformation. A complete work up to exclude something lurking is important (may have been done).

Crumbledwalnuts Fri 21-Jun-13 15:12:41

Bump. All the best to your sister Forever.

FiftyshadesofYoni Fri 21-Jun-13 15:22:21

Story broke a week before my dd1 was due her vaccination, about a local girl who collapsed and died after her jab at school. Was a couple of years ago, spoke to some other mums, one a nurse, one a doctor and one who worked for the vaccination team and all were not going to let their dd's have the jab.

They all thought it was too risky, too early to document any side effects and all a bit russian roulette.

So both my dd's have not the vaccine, when health professionals weren't willing to risk their dd's, I'm happy with my decision.

Crumbledwalnuts Fri 21-Jun-13 15:53:58

I think it's fair enough to withdraw the recommendation. People who want it can still have it.

MissPlumBroughtALadder Fri 21-Jun-13 15:57:16

Lots of side effects reported in Australia. They give it to boys there, too. I find it very hard to support this vaccine, especially when there are so many known factors which increase the risk of cervical cancer, not just HPV. I'd rather see a programme educating on the links between cervical cancer and smoking, for example. Or testing the levels of folic acid in young women, as deficiency and even insufficiency is strongly associated with cervical dysplasia.

Crumbledwalnuts Fri 21-Jun-13 15:59:18

MissPlum: I did not know that about folic acid. That's interesting, I'm going to try to find a paper.

Crumbledwalnuts Fri 21-Jun-13 16:08:16

Here's the study

Thanks Miss Plum. I'm going to do something about that!

CatherinaJTV Fri 21-Jun-13 16:52:45

MissPlum - are you saying young women are not educated on the risks of smoking?

I wish boys were offered the HPV vaccine on the NHS, would save me some money grin

Crumbledwalnuts Fri 21-Jun-13 16:58:22

I think your grin is rather misplaced there Caterina.

I've not seen anything about folic acid and cervical dysplasia at all. I think it's really helpful.

CatherinaJTV Fri 21-Jun-13 17:06:47

I cannot even express how excited I am about the availability of an anti-cancer vaccine. HPV and past cervical cancer treatment are threatening the likelihood of successful pregnancy for someone I love very much and care deeply about. If I can reduce my son's risk of contracting HPV and giving it to his partner, I will and that includes the vaccine (just debating whether I should wait for the new HPV9, or go ahead with the HPV4) amongst other health information.

That bit about folate and cervical cancer is interesting but not as straightforward as one might think (data from the US, where all flour is folate fortified indicates that folate may actually increase the risk of cervical neoplasia progression). Nutritional supplementation is not trivial (and would never replace the benefits of any of the current vaccines).

Crumbledwalnuts Fri 21-Jun-13 17:24:11

It's not an anti-cancer vaccine - HTH.

CatherinaJTV Sat 22-Jun-13 18:58:40

HPV is an anti-cancer vaccine just like HepB

Crumbledwalnuts Sun 23-Jun-13 00:31:46

HPV is a virus.

Cervarix and Gardasil protect against a small number of strains. They protect against the strains found most likely to cause cancer. Women will still need smear tests if they have the vaccine.

Calling it an "anti-cancer" vaccine is rather dangerous.

Crumbledwalnuts Sun 23-Jun-13 22:11:34

Bump

Frontdoorstep Mon 24-Jun-13 07:38:01

Yes, the vaccine protects against the hpv virus which leads to cancer, it's not protecting against cancer, only the virus that leads to cancer.

I agree, crumbled walnuts, calling it an anti cancer vaccine is dangerous and misleading.

noblegiraffe Mon 24-Jun-13 07:46:03

Why did crumbled walnuts call it the 'cervical cancer vaccine' in the thread title if she thinks it's that dangerous and misleading confused

I think it's a fair enough label, its purpose is to reduce the incidence of cancer. No one would give a shit about HPV otherwise.

When I had all my treatment for pre-cancerous cells at 19 through to 30 I was tested for HPV and was found not to have it.

A vaccine wouldn't have prevented it. So when the time comes I'll be paying for DD to have smears until she comes of age that she can have them on the NHS. I think £70 is a small price to pay for peace of mind.

I am still undecided about the vaccination but have some time to do some research as she's only 10

Yes, I have found the lack of reporting of this (came across it a few days ago) somewhat surprising (not).

Forevergreek - you may well now know but was your sister's stroke yellow carded, I'm pleased to hear she is improving.

CatherinaJTV Mon 24-Jun-13 08:17:17

what noblegiraffe says

Crumbledwalnuts Mon 24-Jun-13 21:34:06

Good God I don't mind you picking up on that. I was surprised Catherina didn't do it straight away, and pretty easy as nitpicks go. Yes, it's dangerous - I put my hands up to it - and it just goes to show how the publicity for this vaccine, the innaccurate shorthand, works its way in. You can already see the effects of this vaccine on public health policy, pushing back NHS smear tests to the age of 25. Absolutely shameful.

It's not a "fair enough" label, it's misleading for the reasons described. Women still have to have regular checks for pre-cancerous cells.

Feetlike, hope you are ok now.

noblegiraffe Mon 24-Jun-13 21:44:08

NHS smear tests were pushed back to 25 years ago, and that decision was nothing to do with this vaccine, which wasn't even around at the time.

Kids are vaccinated against meningitis yet parents know that they still need to look out for it because they aren't protected against all meningitis strains.

Are you assuming stupidity on people's part? That they won't understand the information when they are called for their routine smear test?

ZZZenagain Mon 24-Jun-13 21:48:39

I was worried about the side effects. Difficult decision to make. My paediatrician said she had doubts about it too. In the end I decided against it although dd has had all the usual vaccinations

Crumbledwalnuts Mon 24-Jun-13 21:55:02

When they are called for their routine smear test at 25? Isn't that a bit late? Why is it assuming stupidity when they are told they've had a cervical cancer vaccine and they don't get an invitation to a smear? Why would it even occur to them?

Are you kidding me?

noblegiraffe Mon 24-Jun-13 21:57:17

Eh? Who's saying they don't get an invitation to a smear test?

CatherinaJTV Mon 24-Jun-13 22:35:18

the age has been 25 for a while, well before the HPV was introduced (remember Jade Goody?) and there have been special programmes to increase uptake of screening in the younger age groups (25 to 30odd).

Crumbledwalnuts Tue 25-Jun-13 06:00:51

It's been 25 for 10 years and there's a campaign to bring it down.

Noblegiraffe - eh? the NHS says women under 25 are not invited. You say it. I say it. So how will you know you're at risk before 25 if you've had "an anti-cancer vaccine" and you don't get an invitation to a smear?

noblegiraffe Tue 25-Jun-13 07:31:21

You said that it had been pushed to 25 because of the vaccine which is bollocks. So women weren't getting an invitation for a smear til 25 anyway. Having the vaccine means that they are at an even lower risk before the age of 25 than women previously.

I know there's a campaign to lower it to 20 again. The issue is that the test under the age of 25 gives too many false positives. So it was telling loads of women they were at risk when they weren't, and causing lots of distress and unnecessary retesting. A routine smear testing program under 25 just isn't fit for purpose, so now that the risks are even lower, I can't see them bringing it back.

I know what you mean crumbled. I'm not sure it's that different from people not realising they can get a childhood illness (and this is the important bit - still be contagious) if they have been given the vaccination. Mind you plenty of doctors don't seem to understand that either 'cough, followed by rash starting behind ears and spreading to face and downwards with temperature no saintlyjimjams couldn't possibly be measles as he's been vaccinated' (OOH quote).

noblegiraffe Tue 25-Jun-13 08:40:45

But it's not called that when the girls get it, it's called the HPV vaccine. People on the Internet referring to it as an anti cancer vaccine are describing its purpose, which is true.
If girls were being given something that the bottle said 'cancer vaccine' then this fretting might be valid.

Worrying that girls are too thick to read the information that says they are being given the vaccine to protect against one of the main causes of cervical cancer, but that they will still need smears, and to respond to their smear invitation is just a bit insulting.

Well plenty of people don't seem to realise that you can still get a disease after being vaccinated. That's how ds1 caught rubella - via a vaccinated child whose mother didn't realise that her son could possibly have rubella after a vaccination. I don't think she was thick, she just hadn't read the information properly or it wasn't highlighted. People don't read the information do they? I didn't until it all went a bit pear shaped.

noblegiraffe Tue 25-Jun-13 09:23:37

Saying that someone doesn't realise that you can get a disease after being vaccinated against it is rather different to saying that girls will ignore a national cancer screening program because someone on the Internet called the hpv vaccine an anti-cancer vaccine.

Are you suggesting that girls shouldn't hear at all why they are having the vaccine in case they bunk off their smears?

I'm not saying anything about whether people should have smears or not or at what age (tbh I'm a bit meh about screening although I am do attend smear tests, but that's irrelevant). I'm interpreting crumbledwalnuts posts as saying it is likely to give a false sense of security (rather than seeing her describing people as thick, which she has been accused of). My point was that the false sense of security, for want of a better way of putting it, happens with other vaccinations so this is a reasonable suggestion.

noblegiraffe Tue 25-Jun-13 23:09:12

Easily remedied by a 'I've had the jab, do I need the smear? - yes' bit of waffle on the smear invite, I'd have thought.

I suspect crumbled was referring to the women who don't have that conversation, but hey ho.

Crumbledwalnuts Tue 25-Jun-13 23:59:12

Yes I was thank you Saintly and thanks for earlier words of support on the thread (ps I am meh about breast screening but very keen on cervical - I think because I don't believe the screening process can actually trigger cancerous changes).

Yes so I got it wrong about public policy. It doesn't make any difference to the fact that the Japanese government is so concerned about the safety of this vaccine that it's withdrawing it's recommendation. I think that's a pretty serious sign.

Crumbledwalnuts Tue 25-Jun-13 23:59:39

pre=cancerous changes, I guess I should say there

LaVitaBellissima Wed 26-Jun-13 00:04:08

I do wonder about the age having being to 25, I had to have a colposcopy to remove cells at 19 sad

noblegiraffe Wed 26-Jun-13 08:29:26

What women who don't have that conversation??

Women don't tend to diagnose themselves with cervical cancer anyway, and it's not contagious so a vaccine isn't going to encourage risky behaviour of hanging out with people who have it.
Are you suggesting that people who have worrying symptoms won't go to their doctor because of the jab? I don't think so, as worrying symptoms can be many things, cervical cancer isn't the only concern.

Well plenty of people think a rash that starts behind the ears spreads across the face and downwards accompanied by a cough and temp couldn't possibly be measles if they've had MMR (as I said earlier had that experience myself with OOH). Or they think a cough that goes on forever and leads to episodes of retching couldn't possibly be whooping cough if they've had pertussis jab. And I certainly have experience of someone who thought her child's rash couldn't be rubella (and that is perhaps particularly worrying as with rubella you're not often ill enough yourself to bother with a doctor, albeit see above about doctors beliefs). So yes I do think it's entirely possibly someone will discount symptoms (especially embarrassing ones) if they believe that they couldn't possibly have cancer.

noblegiraffe Wed 26-Jun-13 13:04:04

I think childhood diseases are a different kettle of fish to cancer.

People don't usually diagnose themselves with cancer, that tends to need rather more sophisticated tests than looking at a rash.

Lots of people ignore worrying symptoms or think they have cancer when they don't. I don't think a jab will change anything there.

Crumbledwalnuts Wed 26-Jun-13 20:17:55

Thanks for the bumps noble. I think your view is dangerously complacent tbh.

noblegiraffe Wed 26-Jun-13 21:15:20

So you would rather that girls weren't told the purpose of the jab was to provide protection against the main cause of cervical cancer?

Bumping your thread where you call it the cervical cancer vaccine? Surely you would rather that dangerous thread title dropped off the bottom of the list, no? Perhaps you could ask MNHQ to delete it, wouldn't want to get dangerously complacent.

Crumbledwalnuts Wed 26-Jun-13 21:16:59

Thanks for the bump. What do you think of Japan's decision not to recommend this vaccine any more because of concern about side effects?

noblegiraffe Wed 26-Jun-13 21:22:10

Thanks for reminding me, I read this earlier:

"So, the health ministry is going to withhold recommendation of the HPV vaccination because they notice 43 cases for which they couldn’t establish a causal relationship to the vaccine. In other words, 0.0013% of cases, a number so small that it’s pretty close to impossible to affix any statistical significance to it. In fact, random background “noise” (that is that some whole body pain could be expected in any random sampling of vaccinated or unvaccinated individuals) of this type of observation is as plausible as correlation (let alone causation) to the vaccine. In fact, the Health Ministry failed to provide us with data concerning the level of these side effects in the general population. Nor how soon after vaccination. Nor anything potentially useful in a scientific analysis.

What’s worse is that, according to the same article, about 2700 women in Japan die every year from HPV related cancers. So, because of complaints from the antivaccination lunatics in Japan (didn’t know they had any, but I shouldn’t be surprised), and bad statistics (43 potential cases of “body pain” out of 3,280,000 vaccinations), the Health Ministry stops recommending the vaccine. Exactly what were these people thinking?

Finally, let’s be clear here. The vaccine hasn’t been pulled from the market nor has it been outlawed; teenagers can still get the vaccine. And this was a very unusual move, since only 3 years ago, Japan’s parliament added the HPV vaccine to the mandatory schedule. Hopefully, this committee will look at the numbers from a statistical and scientific point of view and fix this stupidity.

By the way, the World Health Organization still recommends the HPV vaccine. Because the HPV vaccine saves lives by preventing future cervical cancers."

www.skepticalraptor.com/skepticalraptorblog.php/japan-health-ministry-pulls-recommendation-hpv-vaccination/

noblegiraffe Wed 26-Jun-13 21:26:51

Also, this recent press release from the USA

"A new study looking at the prevalence of human papillomavirus (HPV) infections in girls and women before and after the introduction of the HPV vaccine shows a significant reduction in vaccine-type HPV in U.S. teens. The study, published in [the June issue of] The Journal of Infectious Diseases reveals that since the vaccine was introduced in 2006, vaccine-type HPV prevalence decreased 56 percent among female teenagers 14-19 years of age.
About 79 million Americans, most in their late teens and early 20s, are infected with HPV. Each year, about 14 million people become newly infected.
“This report shows that HPV vaccine works well, and the report should be a wake-up call to our nation to protect the next generation by increasing HPV vaccination rates,” said CDC Director Tom Frieden, M.D., M.P.H. “Unfortunately only one third of girls aged 13-17 have been fully vaccinated with HPV vaccine. Countries such as Rwanda have vaccinated more than 80 percent of their teen girls. Our low vaccination rates represent 50,000 preventable tragedies – 50,000 girls alive today will develop cervical cancer over their lifetime that would have been prevented if we reach 80 percent vaccination rates. For every year we delay in doing so, another 4,400 girls will develop cervical cancer in their lifetimes.”"

www.cdc.gov/media/releases/2013/p0619-hpv-vaccinations.html

Crumbledwalnuts Wed 26-Jun-13 21:28:39

Nearly two thousand serious side effects reported - the task force considered 43. And decided there was sufficient evidence of a link that further inquiries are needed - and more than that, sufficient evidence of a link for the government to withdraw its recommendation - a rare move. I don't know what your basing your "background noise" on - is it the "background noise" used in cervical cancer safety studies?
And by the way, those anti-vaccination lunatics are in general mothers who had their daughters vaccinated. But as soon as they find something goes wrong, people aren't saying sorry, thanks for your sacrifice, well done for your social responsibility, we'll now repay that with some social responsibility of our own. Suddenly they're "anti-vaccination lunatics". How very revealing.

Crumbledwalnuts Wed 26-Jun-13 21:31:02

They don't understand the US figures. They don't understand this drop - it shouldn't be this big. Maybe people are taking more care with their sexual activity or having less. Certainly the authorities are puzzled by those figures from the US.
However someone who calls distressed, vaccinating mothers as "anti-vaccination lunatics" will have their own special take on that.

Crumbledwalnuts Wed 26-Jun-13 21:36:20

The CDC's been pulled up by government inspectors in recent years for failing to identify and police financial conflicts of interest.

noblegiraffe Wed 26-Jun-13 21:39:29

Nearly two thousand serious side effects reported

Nope, although it's interesting that you read it that way. Nearly two thousand possible side effects, most not serious and as yet they cannot be shown to have been caused by the vaccine.

By the way, it's not 'my' background noise, I thought it was fairly clear from my post that I didn't write it. hmm

noblegiraffe Wed 26-Jun-13 21:41:14

^ Maybe people are taking more care with their sexual activity or having less.^

Or maybe the vaccine is even more effective than thought. Funny how you missed out that explanation.

Crumbledwalnuts Wed 26-Jun-13 21:41:26

So are you offering a background noise statistic? If so, is it from the safety studies? Do you know?
Still calling distressed vaccinating mothers "anti-vaccination lunatics"? Stand by that?

Crumbledwalnuts Wed 26-Jun-13 21:43:28

More effective? You mean it actually stops more strains of HPV than it was designed to?

Crumbledwalnuts Wed 26-Jun-13 21:44:57

"Mika Matsufuji, 46, who represents an association of cervical cancer vaccination victims’ parents, said the health panel’s decision was a “big step forward.” Her daughter, who was vaccinated with Cervarix in 2011, lost the ability to walk and is now in a wheelchair, she said."

Do you mean this particular anti-vaccination lunatic?

noblegiraffe Wed 26-Jun-13 21:47:15

I didn't call any vaccinating mothers anti-vaccination lunatics.

You do realise what quote marks are for, right? To report what someone else said?

If you read the article I linked to, you would actually find out how it could be more effective than thought.

Crumbledwalnuts Wed 26-Jun-13 21:51:12

"So, because of complaints from the antivaccination lunatics in Japan (didn’t know they had any, but I shouldn’t be surprised),"

Enjoy the quote marks

The mothers were complaining. These are the people you call anti-vaccination lunatics.

Crumbledwalnuts Wed 26-Jun-13 21:52:52

Are you offering a background noise statistic? Are you comparing the incidence of these reported side effects with an actual statistic or just generally referring to background noise?

noblegiraffe Wed 26-Jun-13 21:54:42

I copied and pasted a blog post where someone else wrote that line.

If you object to it, you really rather should take it up with them, because they aren't my words

Good grief.

Crumbledwalnuts Wed 26-Jun-13 21:56:15

I should think then that they are using the background noise from the safety studies. What else would they use? Aren't you interested? It's your quote.

noblegiraffe Wed 26-Jun-13 21:58:11

Er, they explained what they meant by background noise. It's in the brackets following the words 'background noise'.

noblegiraffe Wed 26-Jun-13 21:58:48

Seriously, do you not read anything properly?

God that person ranting about the 'anti-vaccination lunatics' sounds rather erm insane blinkered.

What is the definition of an 'anti-vaccination lunatic'? The japanese ministry of health who have stopped recommending the jab? Someone who is wary because of an observed adverse reaction in themselves or their child? Someone who realises there are potential cons to vaccinations as well as positives? Interesting rhetoric.

Crumbledwalnuts Wed 26-Jun-13 22:04:36

What is the point of random background noise of pain when the side effects reported include paralysis? A random sampling of vaccinated and unvaccinated people is not "background noise". True background noise would be a sample unvaccinated with this vaccine or anything like it.

What, you quoted "anti-vaccination lunatics" in order to disapprove of it?

They're always possible side effects. That's what the yellow card system is there for, and although there may be some payouts we're often reminded that that doesn't mean anything at all and oh no the vaccination is perfectly safe.

I would see a system that withdrew a vaccination based on a particular number of yellow cards (ie a particular number of possible reactions) -at least while those were further investigated - to be a system that was working well. I think we know from the urabe case that the UK prefers to ignore concerns until it has no choice but to pay attention. Personally I would prefer my children to be vaccinated in a system that was over-cautious rather than over-confident wrt vaccine safety.

Crumbledwalnuts Wed 26-Jun-13 22:10:20

Can't you see Noble that background noise including vaccinated individuals isn't background noise?

noblegiraffe Wed 26-Jun-13 22:18:37

Saintly, I imagine that the blog author comes across strongly because the health ministry has withdrawn a vaccination recommendation while it investigates under 2000 possible side effects, most of them not serious, from over three million jabs, in a year when over 2000 Japanese women die from a cancer the jab could have protected them from. The USA article shows it's effective.

When you weigh up the cancer deaths and the possible side effects, and the damage done to the vaccination program by the withdrawal, one wonders whether it was more reckless of the ministry to withdraw its recommendation than to keep it in place while the investigations are ongoing.

noblegiraffe Wed 26-Jun-13 22:27:41

Crumbled, by background noise it means (as it says) that in any group of individuals, some of them will suffer whole body pain. In the vaccinated group we have reports of some of them suffering whole body pain. Because some of the group will suffer from it anyway, it's hard to distinguish whether some of the group who have it, have it because of the jab or whether they'd all have it even if they hadn't had the jab.
It's not a statistical analysis, it is merely a general comment.

Maybe the Japanese are aware of the massive under reporting of side effects & extrapolating think it's too much? Maybe they have a lower tolerance for adverse reactions? Maybe they just want those presenting for vaccination to be able to give informed consent (ie have a clear understanding of the risks and benefits).

As someone who daily sees the long lasting effects of vaccine damage I applaud ministries who take a cautious approach. I know that wanting the safest possible vaccination programme possible puts me in the 'anti-vaccination lunatic' camp. What a pity.

noblegiraffe Wed 26-Jun-13 22:29:11

Actually, to clarify, not any group of individuals, any large group of individuals. 3 million would be enough.

Crumbledwalnuts Wed 26-Jun-13 22:30:44

Well I think it's misleading then - it talks about background noise as if it has value as some kind of control. Some of them will have been vaccinated with this vaccine - so it's not true background noise at all - that's a perversion of the phrase. It's a pointless comparison.

noblegiraffe Wed 26-Jun-13 22:31:45

Saintly, the vaccine damage view is only one lens, cervical cancer deaths are pretty horrific too.

Crumbledwalnuts Wed 26-Jun-13 22:32:01

Do you not think reports of paralysis after a medical intervention need to be investigated Noble?

Crumbledwalnuts Wed 26-Jun-13 22:36:47

Regular smears are a very effective prevention. Didn't Diane Harper talk about using women as guinea pigs?

noblegiraffe Wed 26-Jun-13 22:37:21

Crumbled, I'm fairly sure that a statistician would be able to cope with that if they were to do an analysis, but as the ministry hadn't released the data, they can't even start.

And of course a case of paralysis following a medical intervention is worth investigating. Putting the brakes on all similar medical interventions when three million have been carried out without paralysis ensuing would probably not be usual practice.

Crumbledwalnuts Wed 26-Jun-13 22:41:35

It's just that you posted it, and don't agree with the anti-vaccination lunatic phrase, and don't know about the background noise so I'm not sure what you do agree with about that post.

Why is a paralysis after vaccination worth investigating Noble? Because it might be linked to the vaccine? And if dozens such cases are reported, and hundreds more similar but milder cases?

So we should just ignore any safety concerns because it does a good thing, (when it works and for however long it works)? That's not a model for a vaccination programme that I particularly favour tbh. Especially as the other aspect of that model tends to be to ignore those who have been (potentially) vaccine damaged and run smear campaigns 'anti-vaccination nutters' agains their families (so anti-vaccination they had their children vaccinated - hmm).

There are other ways to help protect yourself against HPV infection (such as condoms).

Anyway the Japan approach seems sensible. Point out there may be problems - give the figures (all the ones I have seen include the cervical cancer screening rate), tell people this is only an investigation of potential problems - all the articles I have seen do that - hopefully remind people to use condoms (the most common form of contraception in Japan anyway - they don't really go in for the contraceptive pill in Japan), keep the vaccination free for those who still want it. Not sure what the problem is really. Or are you saying ministries of health should never pass on concerns they have?

Crumbledwalnuts Wed 26-Jun-13 22:42:42

And to be honest Noble that is rather dodging the question, as background noise statistic would be available anyway, without it being given by the ministry.

sorry ignore the rogue screening - I meant the articles give the cervical cancer case rate. ie they're not downplaying that, just pointing out they have some concerns that they want to look further at.

Find it a bit weird that that's seen as such an awful thing to do really.

noblegiraffe Wed 26-Jun-13 22:47:39

Why on earth do you keep banging on about background noise Crumbled? I'm utterly baffled as to what you think you have spotted, or what 'question' I'm supposed to be dodging. I've explained what the article meant by background noise. It seems perfectly clear, and yet you're somehow still banging on about it.

noblegiraffe Wed 26-Jun-13 22:50:46

Saintly, why not wait until you know there are problems? Given that HPV protection will save lives?

Condoms and whatnot is all very well, but it's clearly not doing a very good job in Japan.

Crumbledwalnuts Wed 26-Jun-13 22:55:19

But you brought it up, hinting that background incidence was comparable to what's happening in Japan. That's an attempt to minimise what could be serious damage caused to women by this vaccine. The strong suggestion is they would have suffered this damage anyway. I don't mind if you don't want to talk about background noise or don't understand why it's important. But I assumed you would be happy to talk about it because .. ummmm you brought it into the conversation.

Are you serious noblegiraffe? I think I have a right to know if there may be problems, how can I possibly give informed consent make a risk-benefit decision without that information. You are posting rather as if you believe adverse reactions only ever happen to other people.

I am well aware of what an adverse reaction can look like and how it can change lives dramatically. I want all the information available before making a decision thanks. And yes I know what terminal cancer looks like as well, that doesn't negate vaccine damage.

noblegiraffe Thu 27-Jun-13 07:34:59

Crumbled, yes it could have happened to women anyway, if it couldn't, then they would already know that it was a side effect of the vaccine. But they don't, so more work is needed.

Saintly, you can inform people of possible side effects (as they currently do on vaccine information) without withdrawing the recommendation, is what I meant. If they think there is enough evidence to withdraw the recommendation, why talk about possibly reinstating it later?

So you're saying no government should ever adjust pass on concerns they have about any vaccination programme? They have withdrawn the recommendation presumably because they have concerns that there may be too many side effects and that those outweigh the benefits provided by the vaccination. Whichever way they eventually decide (even if it is 'oh actually benefits do outweigh risks we're happy to recommend again') I think it is refreshing to see a government pass on their concerns rather than just bury them for as long as possible.

I personally think it is unethical for a health ministry & it's scientists to have concerns but not pass on that information. You seem to think this is preferable? I know it is usual practice here and it's one of my biggest problems with the vaccination programme in its current form.It's treating the general public as being too stupid to be allowed the option of giving informed consent.

The problem with not following up on concerns at the earliest opportunity is that if those concerns are later shown to be valid people who might have been okay end up damaged

In the case of withdrawing a recommendation it just allows someone to make their decision with access to all the information known about that vaccination at that time. I very much struggle to see that as a bad thing.

noblegiraffe Thu 27-Jun-13 08:52:42

Giving prominence to potentially unfounded concerns, or overstating concerns in relation to the risk of not vaccinating is also an issue.

"Before the introduction of pertussis immunisation in the 1950s, the average annual number of notifications in England and Wales exceeded 100,000. In 1972, when vaccine acceptance was over 80%, there were only 2069 notifications of pertussis. Public anxiety about the safety and efficacy of the vaccine, following a report published which suggested a possible link between the vaccine and a group of children with brain damage, saw immunisation coverage drop to 30% in 1975 resulting in major epidemics in 1977/79 and 1981/83. As a result, there were more than 200,000 extra notifications and 100 deaths in 1970s and 1980s. Vaccine coverage steadily increased over the next decade as public and professional confidence in the vaccine was restored, reaching 95% by second birthday in 1995 and remaining at between 93% and 95% until 2010 when it increased to 96%. Correspondingly, overall notifications decreased dramatically during this period. The Health Protection Agency (HPA) initiated a programme of enhanced surveillance to monitor the number of cases of whooping cough and vaccine efficacy in 1994."

www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/WhoopingCough/GeneralInformation/

noblegiraffe Thu 27-Jun-13 09:17:32

What I am saying, is that people will die as a result of this announcement, through falling confidence in the safety of a vaccine that saves lives. Not just in Japan either, but in other countries too. And they aren't even sure of their data.

tabitha8 Thu 27-Jun-13 10:48:09

Noble
"Why not wait until you know there are problems...."

Goodness. It could be far too late by then. How would people feel if they'd had the vaccine only to hear later that problems were suspected? That would be outrageous.

Why do you think people will die? The vaccine doesn't remove the need for regular smear tests.

noblegiraffe Thu 27-Jun-13 11:05:35

People will die because they will not get the vaccine due to falling confidence, will get the HPV virus which is a major cause of cervical cancer, which can kill. See the whooping cough deaths in the 70s for an example of this happening.

The vaccine doesn't remove the need for smear tests because there are strains of HPV which aren't in the vaccine so although the risk of cervical cancer is a lot lower, it is not completely eliminated.

CatherinaJTV Thu 27-Jun-13 12:04:16

One certainly shouldn't generalise, but it is not that Japan is the poster child for preventing outbreaks of vaccine preventable diseases. They are battling rubella at the moment, with at least 10 cases of devastating rubella embryopathy to date and they have had HUGE mumps outbreak (leading to fine data on hearing loss due to mumps that no developed country should generate in this day and age, what with the vaccines available and all).

But everyone's risk for HPV is different. If you have all the information available then you are in a position to decide where your greatest risk lies with currently available information.

Really surprised that you think a ministry that has concerns (whether or not further evidence may reduce them) should suppress them.

noblegiraffe Thu 27-Jun-13 12:39:02

And I'm surprised that you think that people dying as a consequence isn't good enough reason for the government to be cautious when making pronouncements on these matters. I'm not saying they should suppress the information.

It seems to me they are covering their backs. Your daughter dies from preventable cervical cancer? Should've given her the jab, it was free and available after all. Your child experiences a serious side effect to the vaccine? Well yes, that's why we don't recommend it.

As for HPV risks, the only way I can tell of not getting it is to be completely celibate. Condoms don't offer full protection. And smear tests are there to pick up cancer signs, not prevent them like the jab. You'd then still have worry and unpleasant treatment, and of course life may intervene making you miss or delay your smear. We have routine smear tests in the UK and people dying of cervical cancer so clearly that's not good enough.

CatherinaJTV Thu 27-Jun-13 12:40:25

did I say that? Gosh - how I hate those "when did you stop beating your wife" comments. This is what I said: Japan's record in preventing VPDs is less than stellar. Their reaction to concerns is actually ok. They are quick to react to reports of adverse events and that is how it should be.

noblegiraffe Thu 27-Jun-13 12:46:54

This article suggests that the investigations will take 6 months to complete, and that only 3 out of 5 on the committee voted to withdraw the recommendation, a decision which has come under criticism in Japan.

blogs.terrapinn.com/vaccinenation/2013/06/18/japanese-health-ministry-withdraws-recommendation-hpv-vaccine/

Only 6 months to draw firmer conclusions. If they reinstate their recommendation, I think that it will take a lot longer than 6 months to restore confidence.

noblegiraffe Thu 27-Jun-13 12:49:01

They are passing the buck for any consequences of vaccinating or not vaccinating onto the public, while not actually giving them enough information to inform their decision.

Actually noble I think people are capable of making their own decisions. They can assess their risk of contracting HPV (which is going to vary massively between individuals) and then make their own individual choice wrt whether the HPV jab is worth the risk of side effects.

I personally feel really quite angry that I wasn't given the whole picture before I vaccinated ds1 - and we live with the consequences of that to this day (and ds1 will live with that for the rest of his life). Had I had the information, he may well still have been vaccinated, just on a different timescale. But our choice was removed.

noblegiraffe Thu 27-Jun-13 13:23:01

Suggesting that people are capable of making their own decisions rather does away with the need for doctors and medical experts to interpret sometimes exceptionally complex data.

Most people are not medical experts, otherwise, let's face it, a small scale and very limited study wouldn't have led to a disastrous drop in MMR take-up, would it?

And it's a pity that those experts didn't count how many had singles instead as the only paper I'm aware of looking into this found that 94% of people had a measles vaccination - either in the form of MMR or single vaccinations. The lowest (mumps) appeared to be related to the single mumps being unavailable (at a guess at 98% opting for singles had measles, 90% had rubella and only 56% had mumps - overall mumps vaccination rate still 92%).

So it seems that the MMR scare didn't scare people away from vaccinating - not according to that paper. It made them choose what they perceived to be a safer means of vaccination. If 94% were choosing a measles vaccination despite a bunch of them having to pay for singles imagine how close they could have got to 100% if the single had been free (or even available to be paid for via GP's).

People on the whole want to protect their children against diseases, but they do want to do it in a safe manner, & imo it remains unethical for a govt ministry to bury their own concerns because 'it might affect the vaccination programme'. Not as much as cover ups that are later revealed.

noblegiraffe Thu 27-Jun-13 13:43:04

Saintly, the paper shouldn't have scared them away from the MMR at all. Any medical expert could have told you that.

It was Wakefield's pronouncement in the press conference that caused the issues, not the evidence.

Actually 'my' medical experts haven't told me that in relation to my younger children at all, but that's a different matter (and one I'm not allowed to mention on here without getting shouted at - unless I am willing to divulge names).

So, sticking to the general point - I think we can summarise.

Your position is:
(1) Concerns that govt bodies such as health ministries have should never be shared until they have been investigated thoroughly and that investigation has reached its conclusion
(2) Until proven otherwise vaccination is always the better option (even for new vaccination where passive surveillance post introduction is effectively part of the safety trials)
(3) Side effects and adverse reactions never outweigh the benefits of whatever it is the vaccination is designed to prevent (even if, as in the case of HPV, you can actually alter your risk of contracting it by behavioural changes).

My position is:
(1) Govt bodies should share concerns, prior to investigations being concluded to allow people to make decisions based on up to date information.
(2) The risk-benefit ratio of a vaccination against HPV is going to vary greatly between individuals depending on their behaviour
(3) Side effects and adverse reactions can have lifelong life changing consequences and therefore informed consent should be given - and can only be given with access to up to date information. This is particularly important for individuals who aren't hugely at risk from HPV because their risk-benefit ratio will be weighted towards the risks.

noblegiraffe Thu 27-Jun-13 14:14:14

Saintly, but if you read the paper, it talks about issues with the measles vaccine too, if parents were really using this paper as evidence to avoid the MMR, then why on earth would they go for the single vaccine, which is also linked, in the paper, to developmental problems? And the paper says 'Measles virus and measles vaccination have both been implicated as risk factors for Crohn's disease and persistent measles vaccine-strain virus infection has been found in children with autoimmune hepatitis'.

It wasn't the paper, was Wakefield banging on about single vaccines that started that whole mess. Like I said, people are usually not medical experts who go and examine the evidence themselves and are clever enough to interpret the data.

In which case I would say it was particularly important that if a government body have concerns they share those. With quite simple information people can work out whether they are at high or low risk for HPV infection, and then decide whether it's worth having a vaccination that the govt body feels has a high number of side effects.

As I already said someone high risk may decide it's worth the risk anyway - it's a harder decision for someone low risk.

This isn't about 'right' or 'wrong' decisions (I don't believe such a thing exists anyway). It's about informed consent, so having a vaccination knowing that you have a risk of particular adverse events and accepting those - usually because you have calculated that the potential benefits outweigh the risk. This is not a given though - it will vary from person to person. It becomes problematic in my mind when you have an adverse reaction that you didn't know was a possibility because you hadn't been told - and particularly problematic if the govt knew it was a possibility but decided to suppress that information.

noblegiraffe Thu 27-Jun-13 14:29:39

Oh, and you have misrepresented my position.

1)I didn't say that concerns shouldn't be shared. It would be perfectly proper for the government to say it was investigating reports of possible side effects and firm evidence would be expected in 6 months. People could hold off it they wanted to.
Withdrawing a recommendation is easily seen recommending against it. But they are still offering the vaccine. What on earth are people supposed to conclude, when the evidence doesn't yet show any causal link? It's just chaos, and not for a really good reason, as you might expect when lives are at stake.

2&3) vaccination is clearly not always the better option, but the HPV vaccine has been shown to be effective, saves lives, and has been given to millions of people without side effects. No vaccine is completely safe and it is possible that even if a causal effect is shown, the risk might be so low that the vaccine continues to be recommended. Recommendations don't have to be just to have the jab or not, either, when you look at other vaccines, lots of categories come into the recommendations for different at-risk groups.

noblegiraffe Thu 27-Jun-13 14:34:30

The governing body doesn't feel there are high numbers of side effects, it is investigating a possible causal link with some serious side effects, for which the current evidence can't establish a causal link.

How can you decide if you are at a high risk of adverse events if it isn't even yet established that these are side effects of the vaccine?

Like I said, they could have said they were investigating possible side effects, and would withdraw the recommendation if a link was established. Withdrawing the recommendation and saying it might be reinstated is just confusing.

No you can't decide whether you are at high risk of a side effect, but you can establish whether you are at particularly high risk of HPV and make a decision based on that. Whether it's have the decision or delay for further information.

Surely that is what they have said btw? They don't recommend it at the moment, its available if you want it, and they're investigating further. Not sure what the problem is unless you assume at this stage that they shouldn't share that they have fears - even for serious side effects. I would have thought that HPV is exactly the sort of vaccination where it was important to share that information because it is possible to establish whether you are at high risk for HPV and therefore the risk-benefit is going to vary from person to person.

Anyway we'll go round in circles on this. It comes down to I prefer to be given all the information available, for concerns to be taken seriously and to be communicated, and for the process to be transparent.

noblegiraffe Thu 27-Jun-13 15:15:50

No, to remove a recommendation and to say that healthcare professionals cannot recommend it is not the same thing as saying that they are investigating possible side effects. It's a much stronger statement than that.

Re establishing that you are a high risk of HPV - well, the vaccine is offered to 13 year old girls, consent given by parents. How on earth do you establish that a 13 year old girl is going to be a low risk of HPV for the rest of her life? A 13 year old cannot say she will never have sex. Sex with a condom isn't good enough, lots of couples have unprotected sex and besides, you need unprotected sex to get pregnant. Maybe you should delay until just before you have sex to get the jab. Shit, I've just had unexpected sex and now it's too late? And at 13 committing yourself to regular smears starting over a decade in the future is just a bit ambitious don't you think?

Well personally I wouldn't give my 13 year old dd the jab but would educate her on when she needs to start thinking about whether she wants it (and tbh I think for is she's old enough to have sex she's old enough to decide for herself whether she wants the vaccination or not). I realise that isn't a popular view, but it just comes back to me seeing vaccination as a decision to be made on an individual risk-benefit analysis, rather than a population one.

I don't have dd's - but if one of my younger sons turns out to be gay I will certainly tell them about the vaccination and HPV, despite it not being offered to boys/men. DS1 won't ever be having sex so it's not something relevant to him - and even if it does start to be offered to all boys he won't be getting it (my decision), because as someone who won't be having sex it is not something he needs. I suspect if it is offered to boys he will be expected by public health bods to have it - even though he will not even be having sex. They're not filtering out where it's needed and where it isn't. Again individual risk factors and individual risks/benefits being different than population ones.

This is all very specific though. The broader question is should health bodies share concerns. You don't think so, I do. We're never going to agree because as I said above I see it as a matter for individual health (therefore you need all the information) you see it as a matter for public health (so don't need all the information).

noblegiraffe Thu 27-Jun-13 16:50:56

I never said that they shouldn't share concerns. Please don't put words in my mouth.

Well I'm not sure what you're saying then, because the Japanese ministry of health have concerns and have shared them and you have said they shouldn't have done that.

In withdrawing a recommendation (even if temporarily) they are sharing that they have serious concerns. It would surely be unethical for a public body to have serious concerns but to continue to recommend something?

noblegiraffe Thu 27-Jun-13 17:06:36

Sharing concerns would be giving information about the possible side effects that have been noted and that further investigations will be taking place as scientists have as yet been unable to establish a causal link.

Factual and informative. I'm all for it.

Withdrawing the recommendation based on incomplete evidence while still providing the vaccine for free is not simply sharing concerns. It is not factual and informative. In fact it is confusing and possibly scaremongering. They could have waited 6 months.

I don't think we'll ever agree. I would view a government continu

Bastard phone
I would view a government continuing to recommend a vaccination they had serious c

Oh FFS this is the only website this happens on

... they had serious concerns about as acting unethically and engaging in a cover up. You clearly do not see it that way & would be c

Comfortable with this actions. I never will be.

And now I am giving up before I hit frigging post again by mistake

noblegiraffe Thu 27-Jun-13 20:29:14

If they had serious concerns then they should have suspended its use. To continue to provide access to a vaccine they have serious concerns about is unethical, no? Not merely withdrawing the recommendation.

But they haven't suspended its use pending investigation. So one is left guessing as to what level of concern they actually do have, seeing as the evidence doesn't yet support a causal relationship and they have said that they may yet reinstate their recommendation.

What a mess.

But less of a mess than a cover up?

We are going to go round and round in circles on this grin

Personally I would prefer to live in a vaccination system overseen in the way the Japanese one is. Much prefer over-cautious to outright denial that vaccinations can ever do any harm (which I think is where we're at).

noblegiraffe Thu 27-Jun-13 21:12:25

Who is suggesting a cover-up? confused

Well I think it could be argued in the case of urabe strain MMR Maybe it was just shocking indifference or a terrible error of judgment, but I think it bordered on a cover up.

It took until 1992 for Britain to stop injecting children with Urabe MMR, replacing it with MMR2, which contains a less potent form of the mumps virus. And, according to the minutes, that action owed more to the decision of the manufacturers of Urabe MMR to cease production. Revoking the licence would have cast light on Whitehall's decision to use Urabe MMR on British children despite disturbing evidence of its potential effects.

Like I said, I prefer an open and cautious approach.

noblegiraffe Thu 27-Jun-13 21:21:31

You keep telling me that I think the government should suppress information, that I believe vaccines can't do any damage and I really don't know where you're getting it from.

Vaccines can and do cause damage. No vaccine is 100% safe. It is possible that this vaccine is causing serious side effects. However, the evidence doesn't yet show a causal link. If the evidence is then shown to support a causal link, I fully support a re-evaluation of the recommendation for its use. If the government has serious enough concerns not to recommend it, then I don't think they should be offering it either.

But the decision to withdraw the recommendation doesn't yet seem to be evidence-based as a causal link hasn't been demonstrated. Why withdraw the recommendation but not the vaccine? Someone hedging their bets??

I didn't say anything of the sort. I said I preferred an open and cautious approach to the one adopted at the time of the urabe issues (which doesn't seem to have changed). I didn't say anything about what you think.

Yes it is possible that this vaccine is causing serious side effects and I personally would prefer to have a ministry of health that acted upon concerns rather than ignored them.

Their response seems sensible to me (much as yes my personal reaction would be 'withdraw withdraw' at the first sign of problems because of my own experience with adverse reactions, this seems a sensible middle of the road approach to me - it would highlight to me that I needed to think carefully about risk factors - which is enough, I don't ask public health officials to do more than that.)

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