Make a difference – driving change worldwide – accessing medications

The learning kept coming, with a session looking at the issues and challenges facing a selection of Member Organizations (MOs) as they worked to establish access to HAE medication in their countries. HAEi RPA Javier Santana spoke to representatives from HAE Costa Rica, HAE Serbia, and HAE Peru.

In Serbia, according to Sladjana Stamenkovic, access to a number of HAE-specific treatments is available, and some patients are participating in clinical trials. She puts this success down to the public awareness campaigns the organization has run over many years. A post about HAE from their country’s President led to a lot of media interest, with hundreds of articles in newspapers and TV shows eager to speak with people with the condition. As a pharmacist, she also recognizes the importance of educating healthcare professionals.

The panel also agreed that it is essential to build external support, especially among key decision-makers such as healthcare professionals, representatives from government, and, as mentioned earlier, journalists and the media, to ensure HAE remains visible. The community depends on cooperation between patients, healthcare professionals, and the pharmaceutical industry.

Carla Boulanger provided an overview of HAE medications in Peru; although two recently registered HAE medications are available, patients still do not have access to them. HAE Peru has been working for seven years now to gain access. She explained that in Peru, the country’s governance is subject to frequent change, which can set back campaigning. There are laws and budgets for rare diseases that give reason for optimism. Still, until pharmaceutical companies feel it is worthwhile to enter the Peruvian medical system, it will be difficult to gain access.

In Costa Rica, there are four available treatments, Istina Monturiol told the audience. Two of them were recently approved, after ten years of campaigning. All three speakers stressed that, despite the time it has taken to make progress, no matter how small, they remain persistent and forceful with their governments and health systems. The support of the HAEi has been very helpful, and they will continue working to secure more and better care for people with HAE.