SAREAL 2022 Panama - GAAPP & Latin Health Leaders

SAREAL 2022

As part of the Latin American Paediatric and Adult Pulmonary Hypertension Symposia, the Pulmonary Vascular Research Institute (PVRI) invited GAAPP and Latin Health Leaders to conduct a patient event to enrich the perspective of the scientific program and bring the patient voice to the healthcare professionals. For that purpose, we invited 15 patient advocacy groups that are current and prospective GAAPP members to participate in a 2-day summit on October 22 and 23 of 2022: SAREAL 2022 Panama.

Respiratory Health, Allergy and Atopy Summit 2022

The Respiratory Health, Allergy, and Atopy Summit (“SAREAL” As it reads its acronym in Spanish) brought together organizations working for chronic respiratory diseases (prevalent and rare), allergic, and atopic conditions to explore the underlying connection and commonalities. This meeting provided the Latin American patient advocacy groups a chance to work together, network, expand their mission to cover more pathologies, and develop a joint roadmap to work together toward a common goal: To improve the quality and span of life of patients in LATAM.

The goals of the summit were:

Promoting the Respiratory Health Network (SARE).
Promote GAAPP membership.
To raise awareness of the health problem that respiratory diseases represent for LATAM.
Reduce lung disease prevalence and improve the region’s respiratory health.
Actions to increase the general population’s awareness and the authorities on respiratory health.
Promote universal access to quality health care.
Essential medicines and vaccination to improve the early diagnosis of respiratory diseases by providing the necessary instruments for detecting respiratory processes susceptible to early detection.

Event Summary:

Saturday, 22 October 2022

To achieve the proposed objectives, a program was generated to allow us to dialogue with the HCPs and PAG leaders in person. It began with a presentation in which the figures on the impact on the lives of the most prevalent respiratory diseases were presented—the importance of the SAREAL NETWORK
and why it is crucial to join GAAPP.

Some initial findings:

Few strong organizations are working on diseases such as COPD and Asthma.
Where are we, and where do we want to go? Patients with unmet needs and only a few patient organizations exist in these therapeutic areas.
How to expand the work that patient organizations do today and their expertise in some respiratory diseases, such as Cystic Fibrosis and Pulmonary Hypertension, to support and represent the needs of patients in other areas?

The plenary included Dr.Mauricio Orozco (Director of the Department of Pulmonary Circulation Latin American Thoracic Association “ALAT,” Colombia), Guadalupe Campoy (Cystic Fibrosis Mexico), Nohelia Varón and Sergio Vitorino (Philips Colombia and Panama), Dina Grajales (Fundación Ayúdanos a Respirar, Colombia) and Victor Gascón Moreno (GAAPP, Austria)

After the plenary, we provided seven lectures on Asthma, COPD, Respiratory Allergies, the impact of smoking, rare respiratory diseases, lung cancer, policy, and atopic dermatitis.

Sunday, 23 October 2022

On the second day of the summit, we organized the patient leaders into two groups based on the level of development of patient advocacy in each country to do a SWOT analysis of the situation of patient advocacy in each region. The working table’s objective was to build a plan to improve the pathway and regulatory frameworks for the health of patients with Chronic Respiratory, Allergic, and Atopic Diseases.

The two groups were:

Guatemala, El Salvador, Panama, Peru, Costa Rica and Ecuador
Mexico, Colombia, and Brazil

The SWOT analysis provided the knowledge to create a roadmap and collaborative framework of joint actions and goals to be implemented during the following years. This was officialized in a signed joint declaration published in a medical journal in Latin America in the coming weeks.

The resulting SWOT analysis and identified actions and next steps can be downloaded in summary below in English and Spanish in the links below.