The voice of the patients | Interview with Hall Skaara, president of PHA EUROPE European Pulmonary Hypertension Association

Mr. Skaara, will you introduce yourself?

My name is Hall Skaara, I’m originally from Norway but I’m representing PHA Europe.

What is the European PH Association and what is its objective?

PHA Europe is an umbrella Association with about 35 European national members. The objective of PHA Europe is to try to help the national associations and the PH community in Europe, in the system, and we do a lot of different things: we run, for instance, awareness campaigns, trying to create awareness for our disease because, as you might know, PH is a disease which is hard to diagnose and the earlier we can get patients to the doctors and get them on treatment, than the better it is for both quality of life and life expectancy. We provide information to our patients, we work on capacity building where we try to help the different associations to mature and help them with the talks with the authorities. The last of our four pillars is advocacy work: we work both on an EU level with the EU Commissions in Brussels, and also with the national associations talking to the officials.

How relevant is the role of the World Symposium on Pulmonary Hypertension for the patients affected by this disease?

The work of the Symposium is very important for the patients and, indirectly, also important for us, because we are working for the patients. They have done a lot to help create guidelines for how to treat PH and to just bring the treatment of PH to new and different levels, which make PH patients live longer and have better life expectancies. We think it’s very important that the patient was also heard when it comes to treatment of the PH patients, and we’re very glad to see that the Symposium brings in this as a separate task force. During the press conference, the 4 founders have stressed the importance of this work, and we are very happy to hear that. I think working together with doctors and physicians will be very important for the treatment of this disease.

What is your opinion about the WSPH Association? How will it impact the Pulmonary Hypertension world?

This new Association that we have just learned about sounds like a very good idea because it brings continuation to the work that the task forces members run and the Symposium that they organize every five years. They have already stressed the importance of the patient associations and we are very willing and glad to assist in any way we can, and we see that this Association is run by very capable people, so I expect just great things from that.

Why is it important to include the patients in the development of drugs and treatments for PH?

I think it’s very important to bring in personal stories, patient stories, because if not then physicians and scientists will only see numbers, and numbers will never be able to replace the people behind the numbers, you know, the patients. I’m a patient myself, and I really see the importance of my voice as a patient into all this. When I meet scientists that work in the development of PH drugs, I see that this brings a different meaning to their work when they can see how their work contributes to patients, to the quality of life and life expectancy to people like me.