Patient Spotlight: Oksana Kulish Skaara, EPAP representative on the ELF Council

Tell us a bit about yourself and your organisation

My name is Oksana Kulish Skaara. I am a mother of a 13-year-old boy. I was originally born in Ukraine, but now live in Norway. I was born with a heart defect and thus developed pulmonary arterial hypertension (PAH). I started a pulmonary hypertension (PH) association, PHURDA, in Ukraine in 2013. We work to better the lives of PH patients in my home country. For instance, we raise money to help our members with medication and education, and we run awareness campaigns in order to get undiagnosed patients diagnosed at an earlier stage in their illness. Furthermore, we work with the government in order to help them decide which PH medication to offer to PH patients.

How did you get involved with ELF?

Firstly our organisation had been following the ELF website and social media channels. We found lots of interesting and valuable information about lung conditions. Some time later we joined the ELF Patient Organisation Network. Also we subscribed to the monthly ELF newsletter to learn more about ELF’s activities and opportunities, including EPAP. We then got an invitation letter to join the EPAP Patient Advisory Group (PAG). Since then we try to stay active as much as possible. We participate in conferences and meetings online and offline. In September 2021 I was elected to join the ELF Council as the EPAP PAG representative.

How has EPAP benefited you? Have you used any of the skills you learnt?

EPAP helped me with my communication and negotiation skills when talking to the government. In addition, I also learned how to improve my communication with the press.

Which EPAP module did you find the most interesting/beneficial?

Every module touches on a particular topic aimed at acquiring specific skills and knowledge. I would highlight the “Influencing policy” module. It is a universal tool and helps with different levels of advocacy.

What would you like to see from EPAP in the future?

EPAP is a great learning tool. A lot of resources and efforts have been made to create and develop it. Therefore, it is very important that it is available to as many people as possible. For me, as a representative of Eastern Europe, in particular Ukraine, I want to see EPAP in Ukrainian. Patients in Ukraine need quality and accessible content.

What is your role as the EPAP representative on the ELF Council, and what does this mean for you?

As an EPAP representative, I have to convey information to the ELF Council. For me personally, EPAP has become a kind of social elevator, which allowed a patient from Ukraine to become a member of the ELF Council. This is a great responsibility and opportunity at the same time. I am the voice that says aloud the problems, challenges and needs of Eastern European patients.

What would you like to achieve on the ELF Council?

I would like to be a voice of the patients and patient associations in the eastern part of Europe. We face many challenges. I would like to help the ELF Council not forget to keep focus on this patient community that does not have the same levels of tools and resources to support them and their condition as other countries do.

Is there anything else you would like to add?

I am very grateful to have this opportunity to be part of an important and influential association.