Juan Fuertes of the European Pulmonary Arterial Hypertension Association is a member of the ELF Council and the ELF Patient Advisory Committee. In this interview, he gives an overview of his organisation’s efforts to raise awareness of pulmonary hypertension and to improve treatment for people with the condition, and talks about World Pulmonary Hypertension Day, which took place earlier this month.
Could you tell me about your main area of work?
My main focus is currently the European Pulmonary Arterial Hypertension Association (PAH Europe). PAH Europe aims to support the 33 existing national pulmonary hypertension (PH) patient organisations across Europe so that they can effectively engage with the authorities and, ultimately, gain access to high quality healthcare and treatment for the condition, which is not currently possible in many European countries.
We are establishing a working relationship with the European Parliament and the European Commission, which is very important to us. We also work with the European Patient Forum and EURORDIS on access issues. We truly believe in cooperation between patient organisations, especially between ones that focus on different conditions, as it can help to change things.
In addition, we have a programme where we identify countries in Europe that don’t currently have a PH patient organisation and we help them to set one up. It is important to train and build capacity in different patient organisations. Therefore forums like the European Patient Ambassador Programme (EPAP), EURORDIS’ Summer School and the EUPATI programme can be turning points for patients in terms of getting patients to advocate for their conditions effectively.
What are PAH Europe’s main priorities?
Without treatment, people with PH have a life expectancy of less than 3 years, so access to treatment and good quality healthcare is very important. We want to keep promote and keep working with other patient organisations and the European Commission and the European Parliament to facilitate access to important treatments.
Another of our key priorities is promoting lung transplants for people with PH. We want to improve policies, increase the number of donors and facilitate the mobilisation of organs between countries so that people can get their transplants. In Spain, one of the best European countries for transplants, around 25% of the candidates for lung transplants have PH. Of that 25.14%, only around 11.4% get the transplant, which means we are still losing too many people while they are waiting. These figures are from official documents published in 2013 – hopefully the numbers have changed since then, but the general situation is dire for people with PH needing a transplant in European countries.
We also really need to harmonise guidelines across Europe. For example, it is very difficult to cross-reference the information held in different PH registries throughout Europe, as they can vary. We know that PH is underdiagnosed in Europe, but it could also be the case that certain countries are over-diagnosing the condition.
Could you tell us about the ‘get breathless for PH’ campaign?
We are very active in raising awareness of PH, and our ‘get breathless for PH’ campaign, which links the condition to sport, is very important to these efforts.
For example, we have worked with the Iron Man competition for a few years. Every year we have 10 athletes as our ambassadors who wear the World Pulmonary Hypertension Day and ‘get breathless for PH’ logo as they participate. This reaches over 100,000 people so really helps to spread the word about PH, as well as other lung conditions and rare diseases. When we go to the events, we also offer lung function testing which attracts lots of visitors.
May marks World Pulmonary Hypertension Day. What do your respective organisations have planned to mark the occasion?
When World Pulmonary Hypertension Day was created in 2012, the idea was to give patient organisations and any other organisations that wanted to help raise awareness of PH around the world a platform to join forces and promote the condition.
25 different countries in Europe organised flashmobs and sporting activities on or around 5 May that linked the ‘get breathless for PH’ motto with World Pulmonary Hypertension Day. Many countries across Latin America also celebrated, as well as the US, Canada, Australia, Japan, Saudi Arabia and other countries.
What does your work on the ELF Patient Advisory Committee and ELF Council involve?
Joining the Patient Advisory Committee (PAC) has been really important; I have learned a lot and have enjoyed establishing a working relationship with ELF and the European Respiratory Society (ERS). Before joining the PAC, we attended the ERS International Congress, which was very useful and interesting, but we wanted to get more involved. Joining the PAC was a way to know more about the direction of ERS, and it is a space to bring together the views of patient organisations representing different lung conditions, and to establish shared priorities and explore the ways that we can make these things happen.
I applied to be a member of the ELF Council, because I feel that the best way to receive is to give. By contributing, you learn a lot and can bring new ideas into the organisation. Through this, amazing possibilities have come up, such as creating an international patient committee, which will mirror the PAC but will have more of a global vision. This could make a huge difference for many people around the world.
What is the proudest moment of your career so far?
I think that my biggest achievement is my involvement with setting up World PH Day. The Spanish association (Asociación Nacional de Hipertensión Pulmonar) was keen to start a national PH day, but I suggested going global with the idea – and it worked! A lot of people thought it was a crazy idea, but it is now a reality. It has been really worth all of the hard work and stress involved to see so many people celebrating each year – it means so much.
More recently, I spoke at a congress of 6,000 doctors in Peru (XXV Curso internacional del policlínico peruano japonés y del vi curso internacional clínica centenario peruano japonesa titulado “medicina del futuro en la práctica diaria”). I was the only patient advocate invited to give a lecture, and my presentation was on the role of patient organisations and how we can work with other stakeholders on things like research. I was very surprised because, knowing that I was there to represent patients, and that I was speaking about a rare condition, the room was packed for my talk.
Find out more about PHA Europe.
