THE BLOG

If This Disease Was a Cancer, We'd Be Spending Millions to Fight It - So Why Are We Ignoring It?

05/10/2014 23:37 BST | Updated 05/12/2014 10:59 GMT

Picture this scenario. There is a type of cancer that you haven't heard of before. It was once relatively rare, but has been rising, slowly, insidiously, for decades, and now kills around 5,000 people a year - more than leukaemia, and more than stomach, liver, kidney or skin cancer.

In fact, even though you've never heard of it, it is now comfortably within the top 10 deadliest cancers in the UK. If it continues to grow at current rates - 5% a year - it could easily be top five within a decade.

And it can strike anyone. Fit, healthy, slim, young, non-smoker - all potential victims. Exactly a year ago it took a very dear supporter of the British Lung Foundation called Anthony. As a fit, 37-year old, non-smoking PE teacher, he was looking forward to a long, happy life with his soon-to-be wife. Just two years later, he was dead. The desperate tragedy of his loss is still difficult to deal with.

Indeed, this cancer kills most people it strikes, often with devastating speed. While around 85% of breast and prostate cancer patients are still alive five years after diagnosis, just 20% survive as long with this cancer. Barely half survive just three years.

So you might think that, even though you've never heard of it, surely politicians, the NHS, and research investors are all aware, and are all frantically trying to tackle it as a matter of urgency?

Unfortunately not. Patients often have to wait months for 'urgent' referrals; most patients with other cancers are seen within two weeks. And, while, for instance, £32m is being invested in leukaemia research each year, the government invests just £600,000 - a mere 2% of that amount - in this cancer. As a result, unlike with most cancers, we still don't even know what causes it, let alone how to cure it.

My guess is that, based on the information above, most of you would be shocked that awareness of this cancer is not higher, that we are not investing more in research, that we are not desperately trying to improve waiting times and care quality, and that we are not doing whatever it takes to ensure that this cancer doesn't continue to grow at its current rate.

Well, perhaps the reason is that this disease - while very real - is not actually a cancer at all. It is a lung disease called idiopathic pulmonary fibrosis (IPF), which causes progressive scarring of the lungs, making it increasingly difficult to breathe. Aside from not being a cancer, however, everything else I mention above - the number it kills, the insidious growth, the speed of attack, the lack of investment, Anthony's story - that is all, sadly, absolutely real for IPF.

Given everything we in this country are rightly doing to tackle cancer - the awareness campaigns, the waiting time limits, the funding for expensive drugs, the fabulous no make-up selfies for cancer research - it is hard to believe that we wouldn't be doing the same for IPF were it also a cancer. But why is this, given it can be every bit as devastating as any cancer?

This week is World IPF Week, which we at the British Lung Foundation having been using as an opportunity, on our Facebook page and wherever we can across the media, to raise awareness of IPF. We've had tremendous support from celebrities, such as Andrea Corr (whose mother died of IPF), Ray Winstone and Amanda Redman, and West Ham United football club. And we've had even more touching support in the form of videos and articles from people living with IPF, sharing their stories.

However, this has to be just the start if we are to address the growing impact of IPF on the nation's health. We need greater awareness among the public and GPs so that they can spot the symptoms and get an early and accurate diagnosis. We need better-integrated, properly-funded and tailored care services that recognise the particular needs of people affected by IPF. And we need more funding for research, in order to find the new treatments required to address and then reverse the number of people dying from IPF.

In short, we need the kind of attention now being given to most cancers. Because for Andrea Corr and her family, for Anthony's family, for the hundreds of other people I have met throughout the country, and the 15,000 families across the UK affected by this dreadful disease, IPF is every bit as serious as any cancer. It's time our government and the NHS started taking it as seriously too.

To donate £5 to support the BLF's fight against IPF, text 'IPF' to 70500.