For many people suffering
from severe disorders and diseases like heart and lung diseases, HIV and AIDS, cancer and
sclerosis etc. the biotechnology contains so much hope and so many possibilities for
research and development into causal treatment either via gene therapy or traditional
pharmacological approaches.
Patent protection on
pharmaceutical products is not a new development, but very familiar to e.g. patients with
cystic fibrosis and HIV/AIDS. The only treatment until now available to these patients
have been antibiotics - all of which are patented. Actually no novel drug have been
promoted in Europe without being protected.
It must be remembered that
in respect of patenting human genes the Directive does not change patent law as it has
been applied for decades. The Directive does not generate a new situation. The Directive
will simply harmonize national patent law and will point out guidelines for what is
patentable and what is not in the field of biotechnological inventions.
Patents safeguard the free
flow of information among scientists. Without a patent an inventor can not be protected
against others commercializing his inventions. Without patentability information will be
kept secret and prevent other researchers from sharing the knowledge. It will slow down
even hamper research and destroy academic freedom.
We see patents on
biotechnological inventions as PATENTS FOR LIFE and not as patents on life. We do NOT
perceive a synthetic copy of a gene sequence as LIFE, but as knowledge obtained by the
help of human efforts - by human intelligence - which nature is not capable of generating.
We do all consist of DNA - a substance of 4 letters A T C and G - but for us life is more
than 4 letters.
What is paramount for us
is that patents on gene-technological inventions for the development of innovative
medicines, cell lines, proteins, antibodies, hormones and other products for the treatment
of disorders can be granted. Recent years' milestones within this area have raised hopes
among many of us that we may obtain new treatments and hope for better chances of survival
and quality of life.
In this week, the European Parliament will vote on the Council’s Common Position of
the Biotech Patent Directive. To us Cystic Fibrosis patients, this Directive means hope
for at better treatment for a disease which is life threatening. We have therefore asked
MEPs to support Mr Willi Rothley’s recommendation to vote in favour of the proposed
Directive without any amendments.
Being aware of the fact that biotechnology is a
complex issue and raises many questions, we would like to take this opportunity to explain
to you why this particular Directive is so important to us Cystic Fibrosis patients.
Cystic Fibrosis (CF) is the most common inherited
life threatening disorder, caused by a defect in one single gene. The life threatening
health problem in CF are recurrent lung infections. The only treatment until now available
to CF patients is antibiotics, which could - if lucky - surpress for some time the
symptoms of our respiratory disorder.
However, CF children and adults still die
prematurely from respiratory failure.
Research is being done in order to reach a
breakthrough in causal treatment of the gene defect. In this respect, CF, together with
Cancer and AIDS are referred to as ‘model diseases’. Recent scientific reports (Human
Gene Therapy) shows that 50% of the ongoing esperimental trials testing gene therapy
are targeted to cancer, whilst the other half of the trials covers CF and HIV/AIDS.
Despite these efforts, 9 years after the discovery of
the CF gene, there is still no causal treatment by gene therapy available and much more
research needs to be done. We Cystic Fibrosis patients are extremely grateful that the
scientists have proven that gene therapy is feasible for CF. This progress in research
allows us to see ‘the light in the tunnnel’. Hopefully this optimisism may also
come within reach for other disorders in which gene therapy it not yet feasible, like e.g.
Huntingtons Chorea and Neurofibromatosis.
Biotechnology holds the first realistic hope for
our patients for a better future.
Therefore, it is our greatest desire is to see
research and development in new drugs speeded up. For several years there have been
endless discussions on the Biotech Patent Directive in the European Parliament. If the
Directive is not adopted next week, we have to realise that our hope is fading away.
We have supported the Directive all the way
through since 1995 and now implore MEPs to help us by supporting the Common Position without
amendments in this week’s vote.