Who gave celebs the right to decide which diseases matter?
AS FAr as public health campaigns go, the adverts in the eighties about the threat of Aids were about as hard hitting as they come.
The actor John hurt warned chillingly: ‘If we’re not careful, the people who’ve died so far, will be just the tip of the iceberg . . . If you ignore Aids, it could be the death of you.’
I was a child at the time and I was petrified, with rumours swirling around that this killer disease could be caught from loo seats or sharing a glass. It’s difficult now for the younger generation to appreciate quite how scary and unknown everything was.
how things have changed. This week a study published in the Lancet showed people with hIV can now expect to live as long as someone without it, thanks to incredible advances in how it is treated and managed. This shift has been so dramatic that hIV/Aids wards and specialist units have actually closed because there aren’t the patients.
This would have seemed an impossible dream to people who in the eighties and Nineties watched as friends and loved ones faded and died while doctors stood by utterly helpless.
But the medical advances in the treatment of hIV/Aids do bring up a bigger question about what can be achieved when money is pumped into research.
The huge amounts of research funds poured into this area led to medications — known as highly active antiretroviral therapy, or hAArT — which prevent the opportunistic infections that prey on people whose immune system has been weakened by the human immunodeficiency virus (hIV) resulting in the development of Aids (the full-blown disease) and led to death. Vast amounts of cash have been raised for hIV/Aids over the years and this helped propel the incredible advances we have seen.
Fundraising events are a Who’s Who of the great and the good. While the condition itself might still be stigmatised, being involved in raising money for it is incredibly fashionable — I recently attended a charity event for hIV and it was wall-to-wall A-list celebrities.
The same is true for breast cancer. There are few subjects that ignite the public interest more than breasts and this, combined with the fact breast cancer tends to affect young, otherwise healthy women, ensures it gets far more publicity than, say, bowel cancer.
But why does it take celebrities to pique our interest in a disease? Why do we need them to tell us to care about an illness? And why do they get to decide what condition should be in the spotlight?
Other conditions — just as devastating as hIV/Aids that affect far more people — receive little to no attention. The problem is that research and policy becomes driven not by clinical need but by what is modish and fashionable.
heart failure, for example, has a worse prognosis at the point of diagnosis than many cancers. Fifty per cent of older people admitted to hospital with heart failure die from it within one year. Yet when did you hear about a fundraiser for that? Which celebrities put their names to heart failure? It’s ignored.
Lung cancer is another example. It kills more women than breast cancer, and more men than bowel and prostate cancer combined. The five-year survival rate is about 6 per cent. That is abysmal. There has been a major breakthrough in treatment with new drugs that effectively block the receptor molecules sometimes responsible for fuelling the cancer.
YeT for these drugs to be given, the tumour needs to undergo molecular testing and this happens in less than 30 per cent of cases in the NhS.
In France, it’s 70 per cent and rising. Imagine if this were the case for breast cancer? There’d be an outcry, but why isn’t there an outcry about lung cancer? It’s because it’s not fashionable.
I don’t want to pitch one disease against another, but I wonder what impact the same energy and funding we’ve seen in hIV/Aids and breast cancer would have on other devastating conditions that affect many more people.
We should be directing money for research to where it’s needed, not where the latest celebrity is telling us to look.