I
watched with intrigue a program called “Kids who cant stay awake” which
focused on young children who have been diagnosed with Narcolepsy.
To
give you a brief insight into what Narcolepsy is, it is an incredibly
complex and barely understood illness. It is an incredibly rare brain
disorder that makes the sufferer fall asleep at inappropriate times
during the day with little warning.
Narcolepsy can result in excessive daytime sleepiness, Sleep attacks, Cataplexy (The sudden and temporary loss of muscle control often in response to emotions such as laughter and anger) and sleep paralysis (a temporary inability to move or speak when waking up or falling asleep).
Narcolepsy can result in excessive daytime sleepiness, Sleep attacks, Cataplexy (The sudden and temporary loss of muscle control often in response to emotions such as laughter and anger) and sleep paralysis (a temporary inability to move or speak when waking up or falling asleep).
So
thats a brief overview of what Narcolepsy is and what it can involve,
for more information on this condition take a look at the NHS Choices
webpage by clicking here.
So
back to the program and what has made me write this article was
something that shocked me. In April of 2009 the Global Swine Flu
pandemic had reached the shores of the UK. Swine Flu is the colloquial
name given and is scientifically known as influenza A Virus subtype
H1N1. H1N1 was first identified in Mexico and it is suspected that it
was brought back to the UK by passengers returning from Mexico.
With
a declared pandemic by the World Health Organisation (WHO) now in
effect it wasnt long before a vaccine was created to fight H1N1, enter
GlaxoSmithKline (GSK) who were behind the production of the vaccine
Pandemrix. Pandemrix was a very new vaccine and its side effects were
not fully known and it is believed that GSK rushed this vaccine out
before the proper clinical trials were completed.
With
more and more children attending their doctors and being diagnosed with
Narcolepsy it was only a matter of time before the parents wanted
answers and more information. With that drive for more knowledge this
pressed on an urge as to whether or not it was something that parents
had done or given to their children to cause Narcolepsy. Eventually one
family were the ones to hold the key to the question — What caused this?
Each
child that had Narcolepsy was diagnosed a couple of months after
receiving GSK’s Pandemrix vaccination for H1N1. In 2011 The Finnish
National Institute for Health and Welfare (THL) concluded that there was
a direct link to the development of Narcolepsy after using the
Pandemrix vaccine. It was identified that there was a 14-fold increased
risk of the development of Narcolepsy.
Thankfully
the administration of Pandemrix has been ceased to patients under the
age of 20 years old. It is estimated that there are around 60 UK victims
who have gone on to develop Pandemrix induced Narcolepsy. GSK have
refused to accept that its product Pandemrix is linked to Narcolepsy
despite definitive research and results pointing to the link between the
two. It is estimated that each one of the 60 victims will receive
approximately £1 million in compensation amounting to a total of
approximately £60 million to which GSK will pay and then bill the UK
Government. It has been suggested that GSK sought absolute indemnity
from the UK Government in that should there be any side effects no blame
could be laid at the door of GSK.
The
issue we have in society today is that large pharmaceutical companies
who are in business to provide new and effective medicines for complex
diseases are unwilling to accept liability of its own wrong doing. GSK
in this instance are evidently wrong and have made major mistakes
regarding Pandemrix and with them seeking indemnity from the UK
Government shows that GSK were never fully confident of Pandemrix in the
first place.
GSK is a major
player in the pharmaceuticals industry, and they must in the first
instance of any doubt refuse to release for public use any medication.
But this being a major industry it is all about money and little about
the safety of patients health.
I
am glad that those whom have been affected by Pandemrix induced
Narcolepsy have been compensated appropriately but for me its far from
enough. Each individual family who had applied for damages were refused
on the basis that their child was not disabled up to a 60% capacity.
This is insulting to say the least. A child whom can not stay awake
during the day, is unable to drive, will need round the clock care to
ensure they are safe is not classed as disabled! Compare this to a
person who has lost a hand, this person can still use public transport,
can still drive, can still bathe, can still complete daily routine tasks
such as preparing meals etc. A person with Narcolepsy is at a severe
disadvantage as they are not able to do many if all of the things
someone with one hand can do. To be refused on the basis that someone
whom has Narcolepsy is not comparable to a person who has only one hand
whereby that person with one hand can still lead a normal and fully
functional life is beyond preposterous. Its just insulting.
Thankfully
the families have been compensated and i hope that this will go some
way to helping their children lead as normal life as they possibly can. I
feel personally that what they have been offered is palpable and isn't
any where near enough for their needs. If i could have made the decision
i would have had GSK pay triple the amount offered to ensure
definitively that those affected were set up for life. These children
will not be able to have what i and many others will want. Unable to
work and potentially unable to have children or settle down and have a
family. £1 million is just not enough but at least it is something they
can use to help build as best a life as they can and i wish them all the
best in their endeavours.
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