Interview with Isabel Saraiva, new ELF Chair

In this interview, Isabel Saraiva – the new ELF Chair – introduces herself and talks about her priorities for the organisation in the next 3 years.

Could you start by talking about your background?

My academic background is in economics and management, but I started volunteering in hospitals and with deaf children in the 1990s. Unfortunately, I had to stop this voluntary work around the time I was diagnosed with chronic obstructive pulmonary disease (COPD), as I was no longer able to balance it with my job as the Executive Director of the Portuguese Association of the Pharmaceutical Industry. I retired from this job in 2007, and started volunteering with RESPIRA – the Portuguese Association of people with COPD and other chronic respiratory disorders. Through RESPIRA, I have done lots of awareness-raising work in schools, in hospitals and in businesses.

How did you come to get involved with ELF?

While volunteering in the field of lung health, I read everything I could about the topic, so I was aware of the work of the European Lung Foundation and the European Respiratory Society.

The first time I got formally involved with ELF was at the Barcelona Congress in 2013, where I was invited to a working group focusing on developing the right package of care to offer people with COPD after they are discharged from hospital.

RESPIRA has also been a member of the ELF patient organisation network for several years, so I have been engaged with the organisation in that way.

What are your priorities during your time as ELF Chair?

I have four key interlinking priorities for my time as ELF Chair:

• Rare diseases – this includes access to diagnosis and treatment, and a general lack of awareness. I have great expectations for the European Reference Networks, including ERN-LUNG, in which ELF and ERS are involved. I think it is the best way to increase the amount of information, innovation and education in the field of rare diseases.
• Air quality – air quality is no longer a ‘green’ or ‘lifestyle’ issue – it is a health issue. We all need to breathe in good quality air in order to have healthy lungs – and especially people with lung conditions. I think that people are becoming much more aware of the problem through campaigns like Healthy Lungs for Life, but there is much more to be done to ensure that everyone is breathing clean air.
• Health inequalities – we live in one of the world’s wealthiest regions, but if you were to look at a map of Europe, health indicators such as life expectancy vary a great deal depending on where you live – whether in Germany or in southern Portugal; the UK or eastern Europe. I want to help shine a light on these inequalities.
• Women – women are crucial to all development issues, including lung health. Women are often carers of people with lung conditions, and women are affected by rare diseases like lymphangioleiomyomatosis (LAM). There is work to be done regarding women that smoke – research has shown that smoking affects women differently to men. Women are also very rarely represented in clinical trials, causing implications for them when they come to take the treatments.

These issues all represent huge challenges – but with the help of our partners, I hope that we can help to improve the situation.

What are you most looking forward to during your time as ELF Chair?

I am very enthusiastic about the high quality of work ERS and ELF carry out to improve lung health by bringing together high-calibre professionals and enthusiastic volunteers.

I am hugely appreciative of the volunteer aspect of ERS and ELF. It is through these enthusiastic people that an enormous amount of information, innovation and education is generated for the good of society in general. I think it really shows the strength and importance of civil society.

As ELF’s second patient Chair, how do you see the role of patients growing within the lung health community?

Patients are at the heart of what ELF and ERS do. In each of our activities, we have to think about the range of people affected by a condition, and their different needs. Whenever there is a question or a problem to solve, we should always make sure that patients are involved in finding a solution. The people that live with lung conditions day in, day out are the true experts, and are therefore in the best position to show us the way forward.