Brainwave

Mind over matter

Stigmatisation of brain health conditions is rife and continues to play a significant role in marginalising people who live with them. As an example, in epilepsy, a subset of brain health, we’ve worked with partners to understand how stigma impacts people with epilepsy. Key insights from the Headway Epilepsy Report show that stigmatisation played a key role in isolating people with epilepsy, regardless of setting, with 51% of adults surveyed feeling alienated.

Tackling stigmatisation is vital and, through changing the terminology, global healthcare ecosystems have taken their first step. As an industry, we must not only adapt to these changes, but choose to actively look towards the future. By working together to redefine brain health, its complexities, and how the brain health treatment and management landscape is evolving, we can help people keep their brain healthy.

The Headway Report found that stigma goes beyond affecting the person, and impacts people’s ability to seek appropriate healthcare, from access to financing, even in some cases affecting the availability of treatment options.

While the causes of stigma vary, research revealed a low level of knowledge and poor understanding as well as lack of public awareness of the disease, often resulting in low institutional preparedness or even discrimination.

This has led to a situation in which epilepsy care is often lacking, with up to 40% of people with epilepsy remaining untreated across Europe due to expected stigma. We also need to analyse certain stigmas that are created by some healthcare professionals; although in the minority, some people can receive inadequate care at a base level which means they can be left untreated altogether.

It is vital that this is tackled quickly and effectively at an institutional and social level. So, what can be done to help improve the quality of care?

Definition is this

Throughout our lives, we will experience many stresses – from cognitive to emotional, psychological and behavioural – that play a large role in our overall brain health. But what’s the lasting cost of these stresses? And how can the pharma industry make sure to pivot to ensure all bases are covered with innovative treatments?

Previously, the way in which the different conditions were categorised created a loose framework around which these conditions were treated, leading to inequal access and implementation of care. The recent redefinition of brain health to include everything from neurological conditions to mental health, however, is critical in addressing this. It is the first major step in overhauling the system.

We now need to ensure collective clarity around (a) how the grouping impacts people, and (b) how we can best utilise this language in a positive and impactful way to tackle stigmatisation.

The addition of mental health into the sphere of brain health has also brought about some complexity: how do we collectively break down the stigmas surrounding different areas and globally redefine what it means to have good brain health?

We must constantly ask questions to gain a better understanding of what actually equates to good brain health and what is needed to make sure all people have access to adequate treatment, resources and education.

Setting a new standard

Once the new term is established, and widely accepted, the critical next step is that a healthcare standard of care for brain health is established across Europe – one which constantly asks questions and evolves alongside our understanding of brain health. To do this, closer collaboration and partnerships between pharma, politics, academica and the patient community will be key.

Pierluigi Antonelli is CEO at Angelini Pharma. Go to angelinipharma.com