Advocacy in action: A panel discussion

Fanny remained on stage to facilitate the next patient advocacy roundtable, joined by Michal Rutkowski, Director, Regional Advocacy Program.

The 6 patient advocates on stage for the session were Janice Strydom from HAE South Africa, Trine Balle Boysen from HAE Scandinavia, Bettina Carty of HAE Ireland, Dominika Słodka of Swelling Beautifully (HAE Poland), Silvana Bastri of HAE Albania and Juan Carlos Valera of AEDAF (HAE Spain).

The first question was to share some information on an advocacy activity from their respective organizations, including goals, actions, and outcomes.

Janice from South Africa spoke first. In the course of a Government decision about the availability of a modern on-demand medication, they noticed that the entire patient community had been reduced to statistics and numbers. The aim was to give HAE a real face and create empathy for patients. A series of patient videos was produced, showcasing the range of HAE and the diverse spectrum of people across South Africa affected by the disease. These included a young girl struggling to fit in with her peers at school, and a man fired from his job because of the visual symptoms of an HAE attack. Janice also told the audience that their most impactful video was of a man who had lost his daughter to an HAE attack while she was at school. “The impact of the videos was remarkable,” said Janice, “It moved our patients from being a page in a textbook to being real people deserving of urgent support.”

Trine from HAE Scandinavia gave a different perspective. For her, the challenge is motivating people to stay involved in advocacy, as countries across Scandinavia have access to modern medication and the opportunity to be well-treated. A young person suggested the idea of an app to support people with HAE as part of their HAEi LEAP project. The organization saw the app as a tool to help people remain engaged and was delighted to support the youngster with this as their LEAP project. The app, “Sums Up” was created to be a friend in the pocket when needed, offering support during challenging situations in life. It is now available on key mobile platforms.

In Spain, Juan Carlos spoke about the importance of their regular regional meetings. “These have been a considerable success,” he said, “but this year we took an extra step.” AEDAF organized a charity concert with a military band, which was also recorded for social media. In addition to the usual information sharing of a meeting, this concert provided a new way to reach people with messages about HAE.

From Ireland, Bettina discussed an awareness-raising campaign called “I Am Number 17.” This was a pharmaceutical company campaign, which told the story of people with rare diseases such as HAE, who make up 1 in every 17 people. Each patient in the campaign had a photographic portrait taken, and their story written up. These have been placed in public parks in the capital, Dublin, and are now in the national football stadium. For Bettina, it was an opportunity to bring HAE into the public eye. “If even 2 or 3 people recognise the symptoms in themselves, that will be a success,” she said. A book has also been produced for hospitals and clinicians, further sharing these vital stories.

From Poland, Dominika indicated that engaging young people was their priority. They created two workshops to ask youngsters about their needs and wants, as well as their shared difficulties. As a result, the organization facilitated a summer camp that brought young people together to freely and openly discuss their lives and challenges. The camp led to a fantastic community that has created two magazines and is giving young people the sense that there is something produced just for them.

Silvana from HAE Albania told the audience that they have been campaigning for more than 3 years for access to HAE-specific treatment. In that time, Silvana said that there had been 3 deaths from HAE in Albania. It was urgent to get treatment and dignity for people. Similar to HAE South Africa, the organization developed videos in which patients shared their stories to bring to life how people with HAE live. The stories included people who had to leave Albania to receive treatment. Ultimately, it was possible to sit down with the Ministry of Health and begin to discuss the needs of people with HAE.

Turning to challenges, Fanny and Michal asked the panel for their recollections about obstacles and what they had done to overcome them.

Juan Carlos said that in his organization, it is seen as best to approach problems step-by-step. That way, people can help out a little at a time. He recalled that Fanny had advised that advocacy is a marathon, not a sprint. “We must be prepared to keep going,” he said.

Dominika and Trine experienced shared challenges in working with young people. HAE Poland adjusted their language to ensure the summer camp spoke directly to the youngsters, making them feel like it was something they wanted to be a part of. It was about being patient and taking the time to make sure young people understood. Trine said that HAE Scandinavia created a clear plan with the youngster and checked in often; everyone was aware of what needed to be done and when.

For Bettina, the biggest challenge was that the Irish organization was relatively new, making it tricky to get new people involved. “To overcome this took courage to say yes to opportunities,” she said, “no matter how scared or uncomfortable it might feel.” It meant participating in the 1 in 17 project and having her photograph displayed in public.

In South Africa, Janice noted that courage is also a challenge. With their video project, it was essential to empower patients to tell their story with confidence. “It can be tough to look back over a life with HAE and all the setbacks,” she said, “especially for the first time.” The solution included a clear explanation of every stage, and ensured each patient had control over how much of their story they wanted to share. It gave people a sense of trust. Once people had shared their stories, they felt less passive and more that they had taken an active part in shaping the future.

The conversation moved into a more rapid-fire mode. The participants shared what they had learned and would like to share with other HAE advocates.

• For Dominika, it was about accepting that things wouldn’t be easy; they would take time, be patient, and have empathy.
• In Ireland, Bettina reiterated her message of saying yes to challenges and opportunities. “Go for it,” she said.
• Juan Carlos echoed his fellow panellists and said, “Never give up, keep going; difficulties are good, as it means that when success comes, it is all the more powerful.”
• Janice felt that the decision to hand control to their patients was a significant turning point. It meant that their powerful emotional stories could come through most clearly.
• In Albania, Silvana said it was vital to know they are not alone. They may be a small group, but through HAEi, they had powerful support. Natasa Angjeleska, their HAEi Regional Patient Advocate, was present during discussions with the Ministry of Health and has an extraordinary impact.

‘It’s better to do something than to do nothing at all. Be patient and never give up.’

– Trine Balle Boysen, HAE Scandinavia