"The past two years have marked a transformative period in Latin America's approach to rare diseases due to the rise of accessible patient communities and digital connectivity, emphasizing a patient-centric healthcare ecosystem."
Ivan Peres Costa, PhD
People living with a rare condition are amongst the most vulnerable groups in society. They have been historically marginalized and systematically stigmatized. It is estimated that 300 million people worldwide live with a rare disease. Despite that, many countries today, especially in Latin America, still lack consideration of rare diseases in public policies and national laws. In the ever-evolving landscape of healthcare, the past two years have witnessed a significant surge in the growth of accessible patient communities, particularly in the Latin American (LATAM) region. This growth has been especially pronounced in the domains of rare diseases, ultra-rare diseases, and oncology, with distinct observations made in Brazil, Mexico, Argentina, and Colombia.
I. Disease-Specific Insights
1. Rare Diseases
The landscape of rare diseases has seen a dynamic shift, with increased awareness and collaboration among among stakeholders. Patient communities dedicated to specific rare diseases have flourished, fostering an environment of mutual support and knowledge exchange. This surge can be attributed to enhanced digital connectivity and a growing recognition of the importance of patient-centric healthcare.
2. Ultra-Rare Diseases
The evolution of patient communities catering to ultra-rare diseases has been particularly noteworthy. The intimacy of these communities allows for in-depth discussions, resource sharing, and emotional support. This shift signifies a broader societal acknowledgment of the unique challenges faced by individuals affected by ultra-rare conditions.
3. Oncology
In the field of oncology, patient communities have become indispensable sources of information and emotional support. The past two years have witnessed a significant expansion of online forums, webinars, and digital platforms dedicated to oncological conditions. This growth is reflective of the increasing role patients play in their treatment decisions and the broader trend towards personalized medicine.
The World Health Assembly (WHA) in Geneva, proposed a universal description of rare diseases, as: “a rare disease is a medical condition with a specific pattern of signs, symptoms, and clinical findings affecting less than or equal to 1 in 2000 people living in any WHO region.”
However, in the Latin American region, there is a wide range of classifications for rare diseases: in Brazil, is considered rare when it affects 65 or fewer inhabitants per 100,000. In Colombia, the range is 2 per 10,000 individuals. Other countries such as Argentina, Chile, Mexico, Panama and Uruguay the range is about to 5 in 10,000 individuals.
The Table from Wainstock & Katz, 2023, shows the difference in "Rare Diseases" definitions in Latin America, the European Union, and the United States. It highlights the importance of effectively implementing the universal description of rare diseases, proposed by Rare Diseases International (RDI) in May 2022, at the World Health Assembly (WHA).
Definition of rare diseases in various countries
II. The rise of Patients Communities
1. Patients Communities in Brazil
Over the past 24 months, patient communities focused on rare and ultra-rare diseases have experienced unprecedented growth across LATAM. These communities serve as invaluable hubs for patients, caregivers, and healthcare professionals to share experiences, access information, and foster a sense of solidarity.
Brazil has witnessed a remarkable rise in accessible patient communities, driven by increased digital connectivity and a growing emphasis on patient-centric healthcare. Notable initiatives from organizations have played a pivotal role in supporting and fostering these communities. Specifically, rare disease communities in Brazil have experienced a surge in membership, reflecting a broader societal recognition of the unique challenges faced by individuals affected by rare conditions. The "Participa Mais Brasil" platform has also contributed to the growth of patient communities by providing a centralized hub for association registration and collaboration. The oncology landscape in Brazil has seen a proliferation of online forums and support groups, offering valuable resources and assistance.
2. Patient Community dynamics in Mexico
In Mexico, the evolution of patient communities has been notable, with a growing number of platforms dedicated to rare diseases and oncology. The ultra-rare disease community in Mexico has seen increased collaboration among patients, caregivers, and healthcare professionals. Digital initiatives and awareness campaigns have played a crucial role in fostering these communities, creating a supportive environment for individuals navigating the challenges of complex medical conditions.
3. Accessible Patient Communities in Argentina
Argentina has experienced a surge in the growth of accessible patient communities, particularly in the rare disease and oncology spheres. The rare disease landscape in Argentina has benefited from increased advocacy efforts and a stronger sense of community engagement. Oncology-focused patient communities in Argentina have become key sources of information and emotional support, reflecting the broader trend toward patient empowerment in healthcare decision-making. Noteworthy contributions from organizations have further bolstered these communities adherence.
4. Patient Community Landscape in Colombia
Colombia, too, has witnessed a positive evolution in accessible patient communities. With a focus on rare diseases, ultra-rare diseases, and oncology, Colombia's patient communities have seen increased participation and collaboration. The unique cultural and regional aspects of healthcare in Colombia contribute to a distinctive patient community landscape, with efforts to address specific challenges and improve accessibility. Some PSP initiatives have left a notable imprint on Colombia's patient community growth, underlining the significance of cross-border collaborations.
III. Regional Dynamics and Collaborations
While each country in LATAM has contributed to the growth of accessible patient communities, regional dynamics and challenges remain diverse. Brazil, Mexico,
Argentina, and Colombia each bring unique perspectives and initiatives to the table. Collaborative efforts across borders are essential to creating a more interconnected and supportive network for patients, caregivers, and healthcare professionals across the region.
IV. Prospects and Cross-Regional Impact
Looking ahead, the future prospects for accessible patient communities in LATAM remain promising. Continued collaboration, technology advancements, and awareness initiatives are expected to further amplify the impact of these communities, fostering a patient-centric healthcare ecosystem across the region.
References
Merck – Brazil (https://www.merckgroup.com/br-pt/company/pags.html)
Participa Mais Brasil: (https://www.gov.br/participamaisbrasil/cadastro-associacao1)
Roche’s Patient Support Program:
World Health Organization (WHO) (https://www.who.int)
Rare Diseases International. RDI Informal Side-Event to the 75th World Health Assembly (WHA) Meeting Summary. Rare Diseases International; 2022. May 24, 2022 (https://www.rarediseases international.org/side-event-75wha/)
Wainstock D, Katz A. Advancing rare disease policy in Latin America: a call to action. Lancet Reg Health Am. 2023 Jan 27;18:100434. doi: 10.1016/j.lana.2023.100434.
National Health Authorities:
• Brazil: Ministério da Saúde (https://www.gov.br/saude/pt-br)
• Mexico: Secretaría de Salud (https://www.gob.mx/salud)
• Argentina: Ministério de Salud (https://www.argentina.gob.ar/salud)
• Colombia: Ministério de Salud y Protección Social (https://www.minsalud.gov.co)