By Professor Jonathan Waxman, President Prostate Cancer
Can you imagine a disease where the annual Government spend on
research is £48,000, where there is no information and support
services for the community, no screening, no helpline, no
pharmaceutical company interest, no clinical trials development
When you try to imagine such a disease then maybe you’ll think
of some rare kidney disorder, some bizarre congenital malformation,
some odd neurological condition affecting three people in the
country. And if this was your imagination’s conclusion then you
will have been terribly wrong.
Because this wasn’t the situation for some terribly rare illness
- it was the picture for prostate cancer in the early 1990s - just
20 years ago!
And prostate cancer is not just some rare illness but a really
common one, in fact it’s the most common cancer of men. The scale
of change that had come to prostate cancer in the 1990s is almost
beyond the imagination. Prostate cancer had increased three fold
over a 30 year period, yet we were dealing with it nationally in
the 1990s as though it were some unimportant illness.
When a person was diagnosed with prostate cancer in the early
1990s there was no professional resource for him to turn to for
help; no friendly voice that told him that there were others like
him who got through the darkness of the early days and out into the
light beyond. In the 1990s there was only one significant drug
company advance in treatment in the research pipeline. In the 1990s
there was no one in Government taking responsibility for this
illness. In the 1990s there was no organisation pumping in central
research funds to support basic scientific work to try and
understand the molecular basis of this cancer.
The situation for prostate cancer contrasted with that for
breast cancer where women had become politicised. For women, breast
cancer had become a feminist campaigning issue. Women had got
organised and as a result of their energy and activity there was a
screening programme, effective treatment, consensus management and
a great government funded research campaign with a resource that
was one hundred times the size of the prostate cancer research
budget. For women with breast cancer death rates were falling. What
a brilliant result...lives were being saved! Unimaginable for men
with prostate cancer.
At that time, frustrated with the ‘system’ as it was I felt that
it was time to challenge the accepted and get things better for
men. I felt it was enough of passivity and the status quo and time
to get going with an agenda that we imposed rather than one imposed
externally which was negative and unlikely to help anyone with
My own specialisation in the area of prostate cancer had started
in 1981 when as a research trainee I had come across a new
treatment for prostate cancer that replaced castration. I had been
fortunate enough to be one of the first in the world to make this
discovery. As a consultant I became very frustrated with the
relative lack of availability of funds to support research in
prostate cancer so I used funds from my own research budget and set
up a national charity for prostate cancer patients.
Originally, describing our national ambition, the charity was
called the National Prostate Cancer Research Campaign. Right at the
start we had a helpline, and there was a budget for research that
funded work around the UK and not just in my own labs.
The original title for the charity hardly glided from the tongue
and this was recognised by our CEO who suggested instead that we
use the name the Prostate Cancer Charity, which slipped very nicely
from the tongue. With the support of friends in the press, relieved
not to be spending all their time working for the Prince of
Darkness we moved onwards and upwards.
A daily campaign followed in the Daily Mail, and meetings with
Ministers. At the end of the first five years of the Charity’s
existence, the Minister for Public Health agreed to our demand to
an equivalence of funding for prostate and breast cancer. What
fabulous development for life in the UK!
Before too long the Prostate Cancer Charity had become a force
for change, and today, reborn as Prostate Cancer UK and working
closely with the Movember campaign, we are ready to step up to the
plate and to any other dinner service imaginable. A major charity,
with serious ambitions to make things even better for men with