By Professor Jonathan Waxman, President Prostate Cancer UK

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 programme?

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 prostate cancer.

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 prostate cancer.

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