Latin America’s missing 80% may hold the key to better care in HAE
The power of advocacy to find, diagnose, and treat all HAE patients
“Every diagnosis could be a lifesaver for the individual, but it could also save someone else,” Fiona Wardman, HAEi’s Executive Vice President and Chief Advocacy Officer, said as the leaders of Member Organizations (MOs) from across South America and Mexico met in Brazil. She was speaking at the start of a new, regionally-led, action-oriented HAEi meeting. But with the biggest challenge facing the region being access to modern, life-saving HAE treatments, why is diagnosis so important?
The latest HAEi State of Management research for this region revealed the stark statistic that only 21% of the expected number of HAE patients have a confirmed diagnosis. The power of advocacy, the MO leaders heard, stems from communicating the scale of the need. Every diagnosed patient potentially means more priority, interest, and action from healthcare professionals, politicians, and policymakers. Increasing the focus on HAE with these stakeholders will help address the regional situation where most countries lack access to modern therapies to prevent HAE attacks.
The 2-day meeting, called the Member Organization Growth and Impact Workshop, was led by Fernanda de Oliveira Martins, Regional Patient Advocate for South America and Mexico. The event focused on practical, hands-on training to implement HAEi tools and grow MO capacity, with interactive, skills-based sessions and action planning. The aim is to drive tool adoption, MO growth, local impact, and accountability. This is vital as we see MOs that use more of HAEi’s tools and resources are significantly more likely to gain access to medications.
HAEi last conducted our State of Management research in Latin America around 10 years ago. Compared to 2015, there are reasons for optimism within the data; countries in the region had seen increases in the number of people diagnosed and greater treatment availability. Fernanda commented on this: “The momentum for modern treatments in our region is growing, so it is vital to build on this by making sure our MO leaders have the right data, skills, and know-how to get more patients on the modern treatments that will save and transform their lives. This starts with knowing who has HAE.”
Mechi Menendez and Alejandra Menendez from HAE Argentina captured the spirit of the meeting: “Surely the next time we meet, we’ll all be a little better off and a little closer to the ultimate goal: that no HAE patient in Latin America remains invisible or without access to the treatment they need. Let’s celebrate every victory, every step taken, and every achievement.”
After hearing the latest regional data, Fernanda facilitated a discussion about the regional and local priorities and how the HAEi’s resources and tools could play a role. The second day focused on how each MO could develop an actionable work plan that would turbo-charge advocacy and drive meaningful change in communities. At every step, Fernanda, Fiona, and Michal Rutkowski, HAEi’s Director, Regional Advocacy Program, were on hand to support the process. Plans included:
- Identifying the need
- Defining the objective
- Outlining the necessary steps to achieve each goal
- Identifying required resources
- Selecting HAEi tools that support each step
- Constructing a 12-month work plan.
The meeting was well-received by the participants. Speaking after the Summit, Carlos Carvajalino from HAE Colombia, commented: “With a deep understanding of our realities as Member Organizations, you made possible a meeting that was truly transformative. Today, we feel more connected, more prepared, and more hopeful in our work.”
The Summit is currently a pilot. Early indications from the participant survey are that the event was a success and will deliver impact in the region:
- 100% of respondents said the Summit was excellent or extremely useful
- 100% of respondents would attend a future Summit
- 100% of respondents said they feel more confident and more equipped to advocate as an MO as a result of the Summit
HAEi will evaluate the sessions using feedback from the participating MOs to refine and strengthen the meeting. Following this, HAEi will explore ways to roll out this important event to more regions, as it complements and builds on the success of HAEi’s global and regional conferences by filling a critical gap with its hands-on, intensive agenda.
