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Rokotusinfo ry is a Finnish non-profit, pro-vaccine-choice, pro-information organization founded June 1st, 2002. Our policy is to not take a stand against or pro vaccination, instead our position is that the decision is up to each person responsible for her or his own health or of their childrens'. The persons who founded Rokotusinfo ry felt that the official information given by the governmental vaccine-manufacturing and vaccine-delivering organization is not something which is enough for an informed decision.
Current activity includes maintaining a vaccine information website in Finnish - you can try taking a look at it with Google Translate. We have also published leaflets with information about vaccination.
(24th January, 2011) THL Vaccine Department Head: Pandemrix vaccine probably caused narcolepsy, but not alone
According to THL's (Finnish National Institute for Health and Welfare) Vaccine Department's head, Dr. Terhi Kilpi, the Pandemrix vaccine alone did not cause narcolepsy in Finnish children.
According to Dr Kilpi, the most probable explanation for increase in children's narcolepsy in Finland is that narcolepsy was triggered by the Pandemrix vaccine together with something else. Dr Kilpi says that ongoing investigations aim to find out whether the other factor is genes, H1N1 virus, some other virus or something else.
This is the first time a high-ranking Finnish vaccine official estimates that there is a causal association between narcolepsy and the Pandemrix vaccine. The statement came out in an interview in Finnish Medical Association's weekly journal, Finnish Medical Journal (Lääkärilehti), on 21st January (1). Dr Kilpi is also the Principal Investigator of studies trying to find out whether there's a causal association between the vaccine and narcolepsy.
Parents: We haven't sent hate mails
In the interview, Dr Kilpi states that "Hate emails stopped when an information day was arranged for parents". Talking also of "scary hate web sites", the article paints a picture of parents of narcoleptic children engaged in hate activities towards vaccine officials. Parents of narcoleptic children strongly deny the allegations as unfounded and disturbing in a medical association's journal and stress that no contacts to officials have been hostile or threatening, but requests to improve the children's wellbeing and aiming to fulfill the children's rights.
Parents also say they are surprised how Kilpi says in the interview that she has stressed the importance of facing the parents. According to the parents, Dr Kilpi has answered none of the emails or other contacts initiated by the parents. The parents will be exercising their legal "right of reply" right to publish their position printed in the journal. The journal did not try to contact parents before publishing the article, as is recommended by journalistic ethis in controversies like this.
Conflicts of interest of Dr Kilpi
The conflicts of interest of many roles of Dr Kilpi has been the topic of heated discussion and public protests by some activists, and has lead to demands that Dr Kilpi should resign.
In addition to leading the research whether the GlaxoSmithKline-manufactured Pandemrix vaccine has a causal association to narcolepsy, Dr Kilpi leads a pneumococcal vaccine trial funded by GlaxoSmithKline with more than 10 million euros. The Justice Chancellor of Finland, Jaakko Jonkka, is investigated the conflicts. Dr Kilpi also was a key individual in the decision to acquire the swine flu vaccine from GlaxoSmithKline. The interview in the Finnish Medical Journal covers the critique of Dr Kilpi and describes how she feels about it.For more information: Rokotusinfo ry, http://www.rokotusinfo.fi/english_html
(1) Articles (slightly abridged in the net version) in Finnish Medical Association's Finnish Medical Journal (Lääkärilehti):
Helsingin Sanomat 14 December 2010: Narcolepsy diagnosed in 41 children vaccinated for H1N1 last year- a crucial fact omitted by the article is that the previous average number of narcolepsy cases in children has been ca. 3 cases per yer, see page 5 of abstract book for IPSA /PSMC conference, Rome 3-5 December 2010
8th Novemember 2010: Parents demand independent inquiry into narcolepsy and swine flu vaccine
Helsingin Sanomat (Children suffering from narcolepsy exhibit severe symptoms - Parents believe narcolepsy is a result of Pandemrix vaccinations) reports that parents demand that an independent research group should look into the adverse effects of the vaccines.
"It is incomprehensible that the National Institute for Health and Welfare (THL) is conducting a study the purpose of which is to study their own actions", says one of the parents.
Narcolepsy - 21% of children's Pandemrix given in Finland, >50% in Finland & Sweden?Based on a FOIA-acquired document from the Finnish THL's expert group, it appears a fifth, or ca. 21% of the children's Pandemrix doses were given in Finland. According to the minutes of the THL-appointed national vaccination expert group (Kansallinen rokotusasiantuntijaryhmä, KRAR) from August 2010, a total of 4 million doses of Pandemrix have been given to children in the world. According to THL, the vaccine coverage in Finnish children was ca. 80 %. With a bit more than a million children (0-17 year-olds) in Finland, ca. 840 000 Finnish children have been vaccinated with Pandemrix.
There'a a bit of uncertainty here with the meaning of "children" in the THL group's (KRAR) document (4 million) and THL's 80% is. In most official contexts in Finland, children means underage people, everyone under 18, but sometimes it's used more loosely, so it might mean a younger age group in some contexts. Nevertheless, the portion of vaccinated Finnish children is very big relative to Finnish population share of the world.
After you take into account the high percentage of underage Pandemrix vaccinations given in Finland (and probably also Sweden), it doesn't seem so suprprising that such a big portion of the narcolepsy cases has been reported in Finland (36 cases from 1st November is last I've seen, population 5,4 million) and Sweden (43 cases, population 9,3 million). Sweden had a bit higher Pandemrix coverage in the whole population than Finland (around 50%), though I haven't seen separate coverage numbers for children in Sweden. According to THL's Dr Hanna Nohynek 1th November, there was a total of 98 cases of narcolepsy suspeced to be caused by Pandemrix, majority of which in Sweden (43) and Finland (36). If the coverage of Pandemrix in Sweden is anywhere near the Finnish percentage, Finland and Sweden together comprise well more than 50% of the children who have been vaccination with Pandemrix, so it's not surprising at all that these two countries are where the increase in narcolepsy has been observed.
Media release 2010-10-28: Narcolepsy and swine flu: Conflicts of interest in Finnish research
Rokotusinfo ry, Helsinki, Finland
The swine flu vaccine Pandemrix is suspected to be the cause of narcolepsy in 36 Finnish children. The cases have been reported in less than a year's time. In earlier years, only on estimatated average of three (3) children in a a year have been diagnosed with narcolepsy.
According to Finnish citizen's group, non-profit NGO Rokotusinfo ry, the Finnish research to find out whether the Pandemrix swine flu vaccine causes narcolepsy in children has conflict of interest issues and prejudice.
The Finnish work to research the possibility of causal relation between the adjuvanted swine flu vaccine and narcolepsy consists of a register study and a laboratory study on human tissue.
The Finnish governmental research institute THL is carrying out a trial worth more than 10 million euros under contract by Pandemrix manufacturer GlaxoSmithKline. At the same time it is carrying out the studies to investigate whether Pandemrix is the cause of narcolepsy.
According to THL, the chief responsible person is the same in both trials - head of THL's vaccine department, professor Terhi Kilpi.
"- THL's vaccine department has also very strongly recommended the swine flu vaccine and had a key role in acquiring the vaccine for Finland. The conflicts of interest are grave and obvious", says Jyrki Kuoppala, chairman of Rokotusinfo.
According to Rokotusinfo, THL also exhibits a prejudice regarding the possible causal association between Pandemrix and narcolepsy. On their web site, THL has a Q&A section where there's the question "Has the swine flu vaccine really increased the number of narcolepsy cases?" and THL's answer is "The connection is only temporal". (1)
"The answer is mind-boggling - it looks like the outcome has been decided even before the research has started", comments Rokotusinfo's chairman Kuoppala.
On their web pages and Finnish media THL has estimated the causal relation between Pandemrix and narcolepsy as improbable, mainly based on the fact that most reports of narcolepsy after vaccination have come from Finland and Sweden.
According to Rokotusinfo's Kuoppala, this line of reasoning neglects the fact that it was mainly exactly these Nordic countries which broadly used the adjuvanted vaccine, even in vulnerable groups like pregnant women and children. In many other countries, another type of vaccine was used for vulnerable groups. There are also big differences in vaccine coverage - in many other countries, the vaccine coverage was 10% or less, while according to THL, 80 % of Finnish children received the vaccine.
Differences in vaccine-related narcolepsy
According to Rokotusinfo, there are differences in the narcolepsy cases report after vaccination and earlier narcolepsy cases.
"Parents whose children have fallen in have told us they think it's important to study all symptoms the children have - the parents' account is that there are differences to earlier narcolepsy cases", says Rokotusinfo's chairman Jyrki Kuoppala.
Narcolepsy has presented itself in younger age groups than earlier. Even four year olds have been fallen ill in some European countries and as young as five years in Finland (2). Narcolepsy also has advanced more quickly than before.
Rokotusinfo ry stresses that there must be sufficient research into the cases so the children can get help.
"THL's research concerns the evaluation of possible causal relation. Other parties do the research aimed to help the children, and these might need extra resources. It's important that independent investigation is possible.", says Rokotusinfo's Kuoppala.
For more information: Rokotusinfo ry, http://www.rokotusinfo.fi / http://www.rokotusinfo.fi/english_html
(26.8.2010) Finland: Chancellor of Justice is investigating if bribery was used in narcolepsy-suspect Pandemrix vaccine trade
According to Nelonen (Channel 4) news, the investigation has begun because two individuals have reported their suspicions to the Chancellor. Investigation targets the Ministry of Health and THL, National Instute for Health and Welfare. THL has received more than six million euros last year from GlaxoSmithKline, which manufactures Pandemrix. THL has also had a key role in the decision to order Pandemrix to every Finnish inhabitant.
To worries that there's a conflict of interest with THL investigating whether narcolepsy is caused by Pandemrix, the Ministry of Health has the position that it trusts THL and sees no problem with the issue. The written material which lead to the bribery investigation however also requested that the Ministry of Health's actions should be investigated. Ministry of Health made the final decision of ordering Pandemrix.
According to Chancellor of Justice, Jaakko Jonkka, there's no direct [ evidence to support ] suspicion of bribery, but the situation where GlaxoSmithKline has funded THL's activities with millions of euros and THL buys vaccines from GSK is, generally speaking, a risky situation, since the seller funds the buyer. "As the old saying goes, there's no such thing as a free lunch".