Make a difference – driving change worldwide – working with health ministries

Building on the previous session, Natasa Angjeleska invited Verce Jovanovska Jankovska from HAE Macedonia, Michelle Coronado from HAE Panama, and Silvana Alkoci from HAE Albania to discuss their experiences working with health ministries to advance campaigning for access to HAE-specific medication.

The panel discussed that their efforts began with meetings where they had little more than hope that things could improve. Individual voices were easy to ignore. In North Macedonia, that all changed when the HAE organization partnered with other rare disease organizations to create a unified voice for all rare diseases. Eventually, this led to an invitation from the Ministry of Health. All of the panel members agreed that it was hugely important to work together with other individuals and organizations, both within their country and internationally, such as HAEi. Collaboration amplifies a small number of voices into something much more powerful.

For Michelle, working with health ministries in Panama represents a particular test of patience. While their initial meetings were positive, with officials hearing about patients having severe attacks and even deaths, everything happened extremely slowly, and often personnel would change, making it feel like there had been no progress.

Silvana had the advantage of having worked at the Albanian Ministry of Health. This experience enabled him to articulate a clear platform of needs, as there had been no HAE treatment in the country for over 30 years. “This cost us lives,” Silvana said, and shared that he personally felt the absence of treatment as he had suffered from life-threatening attacks.

The support of a doctor or group of doctors was certainly an important element in working with government officials, according to the panel. In Panama, the situation was complicated when the country’s rare disease coordinator changed four times. Michelle admitted feeling totally discouraged, but she thought of children with HAE and how important it was for them to have a better life.

The panelists couldn’t overstate the importance of more than just emotional stories. For Silvana, this meant showing health officials that, by joining the EU, there would be a requirement to provide better care for people with rare diseases like HAE. In North Macedonia, every Monday morning, the group sent emails to the health authorities detailing the previous health issues faced by the country’s HAE community.

Eventually, with consistency and persistence, it was possible to open doors and to be heard by officials from their respective health ministries. Panelists also highlighted the help and support of many people within HAEi. Tony and Henrik, for instance, showed the way to many.

Silvana is proud to say that prophylactic medication is now available in Albania, saying, “I was the first patient to receive it last April.”