Raising awareness and advocating for change

First on stage, bright and early on a Saturday morning, was HAEi Regional Patient Advocacy (RPA), Natasa Angjeleska. Her talk was to focus on raising awareness and advocating for better.

For Natasa, her own advocacy journey started when her son was diagnosed as a baby. This gave her motivation, and she was fortunate to meet people from HAEi and become part of the fledgling RPA network.

The RPA network, Natasa said, is about organizing resources and supporting Member Organizations to help the whole patient community obtain diagnoses and treatment.

She said she is often asked by individuals, “What can I do?” Her response is to start somewhere, for example, just posting on social media. Explain in simple words what HAE is and how it affects you. You can reach a lot of people through your posts being shared by family and friends.

‘What next?’ she asked. Collecting data is simple and powerful. A small survey of the number of HAE attacks in her country, North Macedonia, helped to convince the Government to fund preventive treatment, where previously only on-demand medicine had been available.

‘Data creates the evidence for your arguments. You can use it to advocate on your own and in front of Governments.’

Advocacy is everyone’s responsibility. Everyone can do something; participate in conferences like EMEA, seek support from friends or co-workers, and spread the word. Building networks, Natasa felt, creates the conditions for success in advocacy.

Another way to advocate, Natasa told the audience, is by being informed. Your primary care and emergency room physicians have limited time to learn about HAE and often know little about the disease. You can easily share information to improve their understanding. HAEi offers free emergency room posters that can help doctors (and, indeed, patients) recognize HAE.

Another way to be informed is to use HAE TrackR. This free app is a comprehensive tool to track your own disease (or that of a loved one), share information about your symptoms, attacks, and treatment, and ultimately get better care. Sharing her own experience, Natasa explained how HAE TrackR had helped her son, who at the time was having frequent attacks. Having the data to show the sheer number of attacks helped her advocate for prophylactic therapy.

This individual act of advocacy became part of a larger effort, demonstrating the need to keep setting higher objectives. Initially, the focus in North Macedonia was on securing access to on-demand medication. With that success, they re-focused on preventive therapy. Over time, prophylaxis became available, but only to children. The advocacy then shifted to ensuring that everyone who needed prophylaxis could access it. Every time it meant sharing stories, campaigning on social media, and contacting policymakers. The cycle never stopped.

It can be hard, Natasa admitted. The Friday evening panel’s energy was infectious, and she was struck by how they had different experiences but were all pushing for the same or similar goals.

She ended with a quote from North Macedonian-born Mother Teresa, who said: ‘Not everyone can do great things, but everyone of us can do small things with great love.’

‘No one should feel isolated or alone. The RPAs are there for everyone. HAEi offers a vast array of tools, information, and technology to help advocates achieve their aims.’