The Darker Side of Pink

Claire Gillis headshot

By Claire Gillis, CEO, VMLY&R Health

Today is Metastatic Breast Cancer (MBC) Awareness Day, though there’s a good chance you didn’t know it. MBC is an ‘unspoken’ cancer – a rarely discussed footnote in the breast cancer story, often drowned out in a sea of pink ribbon. MBC is the biggest cancer killer of women under 50 – accounting for 31 women every day in the UK alone. And it kills men too. It’s a horrible disease made worse by an equally horrible patient experience. As one patient group (lead by campaigner, author, blogger and patient advocate Jo Taylor) puts it: MBC is the ‘Darker Side of Pink’ – the not-so-fluffy story we seldom hear. That, along with everything else surrounding MBC, needs to change.

MBC’s profile during Breast Cancer Awareness Month is too low, with the spotlight typically falling on earlier stage cancers where the survival story is more positive. Although outcomes data for MBC is outdated and patchy – a story in itself – survival rates appear to be improving too as new treatments bring incremental gains. However, those gains are set in a starker context: MBC is incurable. Unfortunately, we’ve allowed that uncompromising prognosis to define the disease. It’s framed the discussion and quietly dictated the way society treats people with MBC.

Speak to any MBC patient and they’ll tell you the disease is, in more ways than one, a death sentence (and this is verbatim). They’re cast aside by society; isolated, ignored and written off. Others feel they’re treated “like walking corpses”. Jo Taylor, founder of advocacy groups abcdiagnosis and METUPUK, says patients feel like no-one is listening to them. Worse still, she says, when people are diagnosed, HCPs immediately lurch to the language of palliative care, even though many are some distance from end-of-life.

This brutal – actually inhumane – patient experience needs urgent address. Yes, MBC is an incurable disease, but it’s also a treatable disease – and those treatments can extend life and push survival rates beyond the current median of 2-3 years. People with MBC have lives to live, things to do, wages to be earned, contributions to make and wonderful moments to share with their loved ones. That’s the story that needs to be told.

We need to move away from language that frames MBC, and with science as our compass, push towards redefining it as a chronic terminal disease where patients can still live their best lives possible.

There’s a long way to go. All over the world, people with MBC are stigmatized because of their terminal diagnosis. In some countries patients are being deprived of basic human rights like their right to work or their ability to get health insurance. It’s an assault on their dignity that flies in the face of scientific progress being made. As treatments improve, there are increasing examples of people living with MBC for ten years or more. Despite this, patients are being shut out of society and prevented from living their lives simply because there’s insufficient understanding of the disease.

Let’s be clear: an MBC diagnosis is a nightmare. But we don’t need to make that nightmare harder than it already is.

As health communicators we, of course, want to help improve outcomes. Advances in medicine will take us along that path. However, we also need to ensure that we’re changing the experience for patients. Because the hard yards earned by better medicines will be undermined if patients’ everyday experiences stay stuck in the mud.

Communications has a big role to play. At VMLY&R health, we’ve spent years working with advocacy groups like ABC Global Alliance and now with METUPUK to campaign for patients’ rights to the best experiences possible. To connect our teams around the world we’ve also just set up an MBC task force – combining our work with industry, academics and patients – to advance that goal.

But we’re already making progress. Today, our team in Spain will join MBC patients in the Spanish Parliament to lobby, among other things, for the right for MBC patients to return to work. Their appearance was, in part, helped by some of our work (a quick shout out to our wonderful creative teams): Paintings of Hope, a campaign, which uses voice recognition and AI to (literally) paint real pictures of life with MBC, and turns patient empowerment into an art form.

That work is just one part of our mission to give MBC the platform it deserves but so rarely gets. That’s why, on MBC Awareness Day, I’m calling our teams to pull together – as we continue to redefine MBC – not only as a liveable disease but also to transform the experience for patients. If you want to get involved – please get in touch [email protected].

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