Embracing Opportunities – A spotlight on EMEA subregions

Joining Michal Rutkowski and Maria Ferron, two of HAEi’s Regional Patient Advocates (RPAs) on stage were 5 patients from across the diverse EMEA region: Arbia Barhoun from Tunisia, Ana Freitas from Portugal, Lina Keneciuse from Latvia, Mihaela Shogoric from Croatia, and Janice Strydom from South Africa.

The two RPAs began by asking each patient to introduce their country and HAE organization.

Ana from Portugal spoke first. She told the audience that HAE Portugal was created in 2010. They have now reached 70 members, which was driven in no small part by the emergence of new HAE therapies in the country. There are now, she said, 2 modern therapies approved and available to patients in Portugal.

Arbia, speaking in her native Arabic, said that the Tunisian organization was likewise made up of 70 patients and a group of doctors. It exists to raise awareness of HAE and to convey patients’ voices to decision-makers to obtain better care. She indicated that an important aim beyond awareness is to address misconceptions, and that advocacy means supporting patients however they need it.

Lina described her home country, Latvia, as a small Baltic state of less than 2 million people, where there are currently 13 diagnosed HAE patients. She outlined how the current treatment options are limited: there is on-demand treatment, which the Government covers, but no long-term prophylaxis therapies. There are a few doctors who do their best. Lena felt their advocacy had made a good start and would only improve by being at the conference and sharing with those around her.

In Croatian, Mihaela told the audience that HAE Croatia was formed in February 2000 through a union of friendship and a desire to help. Currently, there are 122 patients in Croatia, up from about 60 when the organization began 25 years ago.

A similar number of patients are diagnosed in South Africa, explained Janice, but their 135 patients are from a population of more than 60 million people, meaning there are approximately 1000-1200 who remain undiagnosed. Returning to the subject of misconceptions, Janice said that some South African doctors see all swelling as an allergy and treat it as such. Additionally, there is a social stigma relating to hereditary diseases, which can prevent families from coming forward for potentially life-saving diagnostic tests. The treatment landscape is extremely limited, with only one on-demand treatment being available in two hospitals. For Janice, advocacy is about making sure everyone has a fair chance of treatment, wherever they live.

Michal and Maria moved the discussion on to achievements. Janice was the first to answer. She expressed pride in how patients across South Africa had created a feeling of belonging, and how that had taken away the loneliness that often comes with a rare disease.

‘Meeting another HAE patient or family for the first time is a really life-changing experience.’

– Janice Strydom, HAE South Africa

HAE South Africa’s receipt of its first funding was a huge step in building the community in the country. It allowed them to do some simple yet essential things to take their organization to the next level, such as upgrading the website and increasing their social media presence.

The Portuguese HAE organization was proud to make a difference in its members’ lives, especially by improving access to medication and showing that they are not alone; everyone is working to reach a crisis-free life.

Lina felt personal pride in stepping up to try to improve treatment for all patients in Latvia. She described herself as a ‘beginner’, but they are already collaborating with doctors, writing letters to the Government, and developing their website with the support of their RPA, Michal.

Lina was then asked about what keeps her motivated. Her answer was her son. She wants a better and more comfortable life for him.

Lastly, Lina was asked to share one thing she’d learned in patient advocacy. She referenced the HAEi tool HAEi FocalPoint as something new she has gained a lot from. And sometimes you try something and get only a small response, but not giving up is the most important thing.

‘Remember on the days when you wake up feeling like this isn't working and you don't know why you do it, remind yourself that success in advocacy is not about the big wins or the big projects. It's about the persistence and consistency.’

– Maria Ferron, HAEi RPA

Arbia was asked about how she remains resilient. She remarked on the importance of working towards a shared goal by making small, manageable steps. Her motivation comes from knowing that effective medicine exists. Some countries have obtained medicine. ‘We want to be like them one day,’ she said.

Similar to Lina, Arbia felt that learning to remain optimistic is crucial to advocacy. Keeping a positive attitude and working with others are essential, she said.

Mihaela said that motivating other patients to stay involved can be as simple as ensuring there’s a new venue for a meeting; a chance to socialize can help people open up and share knowledge, even talking privately with their doctors.

Mihaela was asked to explore the changing role of digital and social media in her advocacy. She stressed the continuing importance of Facebook but said that through her relationships with people in television and newspapers, she has secured media time to tell stories about HAE.

Ana shared that the support of HAEi had been extremely important to their efforts. The future opportunity is with young people. They can make a significant contribution.

‘Young people are a hope for a new vision of HAE.’

– Ana Freitas, HAE Portugal

The hope and future opportunity for Janice in South Africa is clinical trials. They already have 28 patients participating in trials, which equates to 1 in 5 diagnosed patients.

Looking ahead, Janice suggested that while countries and Member Organizations may look very different, the challenges and solutions remain the same.

All panel members were asked to sum up their vision for the future in a single word. Ana captured the spirit across the group with the word: ‘normality’.

Thanking the panel for their contributions, all the roundtable participants left the stage, and the conference closed for the day.