8
street roots
* 1 f U N
Sept 16, 2011
Fifty years since the notorious drug thalidomide
was banned in the United Kingdom, the company
who produced the drug have yet to apologize fo r
causing birth defects around the world.
Campaigners are taking the fig h t to a German
pharmaceutical g iant in their pursuit fo r justice.
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REUTERS/STR N E W
U.S. thalidomide victim Tony Melendez at age 4. He now lives in Dallas, and is one o f thousands o f Americans with deformities from the drug.
‘We will get justice... nothing will stop us’
BY A D A M FORREST
STR EET N EW S SE R V IC E
iz Buckle lives on the north side of
Lismore, a small island a few miles off
J L / t h e west coast of Scotland. A lively
woman of 51, Liz knows every inch of the
Argyll countryside, haying spent many years
driving around to work on rural
development projects for thé Scottish
government. Sadly, poor health forced her
to give up the job six years ago. “It was
lovely work but my body just couldn’t take it
anymore,” she explains. “I used to come
home and collapse and spend the evening
flat out on the floor.”
Liz is a survivor of the notorious drug
thalidomide. Marketed at the end of the
1950s as a “wonder drug” for pregnant
women suffering from morning sickness,
the substance was withdrawn from the
shelves of British chemists in 1961 after it
was found to cause debilitating birth
defects. The UK government only
apologized for its part in the scandal last
year when it finally set aside compensation
money for the victims. Thanks to this new
health grant, Liz is making some changes.
She expects her kitchen to be retro-fitted
soon with low-hanging boiled water taps, a
custome-made oven and cabinet drawers
which can be opened by foot Until then,
Liz’s stunted arms mean simple tasks like
making a cup of tea remain fraught and
exhausting.
“Yoii see I have to lean the kettle against
my chest to sort of pour it into the mug, so
I seem to forever be covered in singes and
burns,” she laughs and sighs. “I make the
most of the day because by the evening I do
feel incredibly tired and achy. Most of our
group are like th at It’s like we’ve become
old very early. Our doctors say it’s like we’re
sort of 80-years-old, in body. Not old in mind
of course, because there’s still a lot to do.”
Here in the United States, thalidomide
was never licensed for general use. The
Food and Drug Administration blocked it
from bèing marketed for sale. However, that
didn’t stop physicians from giving out
millions of samples to a reported 20,000
TT
patients in a clinical trial. It has also been
reported that many Americans received the
drug from overseas sources.
New Jersey-based Celgene Corp, won
FDA approval to use the drug against a
painful side-effect of leprosy known as
erythema nodosum leprosum.
Of the 2,000 babies born with deformities
in the U.K. between 1958 and 1961, less
than 500 are alive today. Half a century on,
the survivors have entered middle age still
battling the disabilities the drug caused, and
many find their health deteriorating. As well
as living with shortened limbs, some have
also endured malformations of the eyes and
ears, heart, genitals, kidneys and the
digestive tract Since original compensation
deals made with British distributors in the
1970s are no longer enough to pay medical
bills, the survivors are now fighting to
ensure the major player in the thalidomide
story — German pharmaceutical giant
Grunenthal — finally makes an apology and
fitting recompense.
Sitting behind the gates of the huge
Stolberg headquarters in the heart of
Germany, Grunenthal’s bosses have good
reason to fear an impressively determined
bunch of British campaigners. London
jeweller Nick Dobrik, Yorkshire
businessman Guy Tweedy and single mom
Mikey Argy are adamant that the original
sin is addressed. The drug was developed by
Grunenthal in 1953, and brought onto the
German market in 1957, then internationally
the following year. By the end of 1959, the
first clear reports of nerve damages reached
the company, but it wasn’t until an
independent Australian doctor, William
McBride, did his own research about the
connection between mothers taking
thalidomide and a marked increase in birth
deformities that the drug began to be
withdrawn in late 1961.
Mikey, who does Pilates with specialist
equipment to keep back pain at bay,
explains why so many retain their outrage.
Although Grunenthal was pressured to
establish a trust fund for German victims in
1970, the company has never acknowledged
any error, or established any compensation
for those affected in 46 other countries.
“Grunenthal looks at us as disabled
people, not people who have been injured
by their mistake,” she says. “We feel treated
with contempt because they’ve continued to
ignore their mistake for fifty years. It’s
hurtful, but you need to put your head down
and get on with campaigning. Even the best
natured of us are angry. We will get justice.
Nothing will stop us.”
Distillers, the British distributor of the
drug, did set up a compensation fund back
lit the United States, thalidom ide was never
licensed lor general use. The Food and Drug
Administration blocked it from being
marketed for sale. However, that didn't stop
physicians from giving out m illions of
samples to a reported 2 0 ,0 0 0 patients in a
clinical trial. It has also been reported that
many Americans received the drug from
overseas sources.
in 1968. The company, now part of Diageo,
paid £2.8 million ($4.4 million) a year to the
Thalidomide Trust and earmarked an extra
£150 million ($237 million) to be given to
survivors in 2005. Campaigners also
received a huge boost in January 2010 when
the UK government expressed its “sincere
regret” for failing to protect consumers and
set up a health fund so survivors could
adapt their homes. “We piled on the
political pressure,” Nick explains of the
meeting with Members of Parliament and
the Fostering of Commons debates. “We
lived it 24 hours a day, seven days a week. A
parliamentary campaign might seem dry,
but it was very, very important to a just
cause.”
Nick calculates that he and Guy have
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