HEALTH CARE LEADERS SYMPOSIUM II: sharing success stories on the implementation of value-based health care models in Brazil and Colombia

In November 2022, the Americas Health Foundation conducted the Second Health Care Leaders Symposium where Drs. Lilian Torregrosa and Vanessa Teich shared their work and experience on implementing value-based healthcare models in Brazil and Colombia. Through their success stories, we learn that, despite existing system fragmentation and barriers in access and resources, it is possible to support the implementation of value-based health care in the region, improving care for patients and promoting a positive impact on systems.

This project was financed by MSD.

Speakers:

• Dr. Lilian Torregrosa (Colombia) 
• Dr. Vanessa Teich (Brazil)

Innovative Contracting Mechanisms to Increase the Adoption of Novel Antimicrobials in Latin America

On October 26, 2022, the Americas Health Foundation conducted a virtual webinar on Innovative Contracting Mechanisms to Increase the Adoption of Novel Antimicrobials in Latin America to increase awareness on the topic and inform relevant stakeholders of possible solutions to further access to novel antibiotics.

The full webinar has been recorded and can be found here, in addition to a summary of the key takeaways from the event.

The Awakening of Rare Diseases Webinar

The Awakening of Rare Diseases in Latin America.

In order to highlight the importance of early diagnosis and treatment of rare diseases in Latin America and the policy challenges facing policymakers who seek to respond to this need, the Wilson Center’s Mexico Institute and the Americas Health Foundation (AHF) conducted a policy forum in August 2021.

Key takeaways:

Importance of widespread awareness that rare diseases are not so rare. They affect ~ 50 million people in Latin America and have an exponential effect on the patients’ family. The diagnostic odyssey in the region is an average of 10 years. Early access to molecular testing could shorten this journey.
Even countries with strong legislative frameworks have a long way to go in the implementation of these laws so the people they are written for actually get the benefits that the laws intend.
Varying definitions of rare diseases throughout the region's countries hinder policy, access, advocacy, and research efforts. A standardized regional definition would be beneficial.
Patient organizations must be empowered and the value and knowledge that they can contribute to policymaking and health technology assessment in the regulatory process must be leveraged
Innovative financing mechanisms and models can be implemented to manage the high cost of testing and treatment for RD, such as shared financing between the health system and a designated fund for rare diseases.
Stakeholder engagement across the RD ecosystem with coordinated efforts from the private and public sectors is crucial to find sustainable solutions.

Speakers:

• Dr. Claudia Gonzaga-Jauregui 
• Dr. Ivan González
• Diego Fernando Gil Cardozo
• Antoine Daher 
• Dr. Roberto Giugliani

World Rare Disease Day Round Tables

Rare Diseases in Latin America: A Dialogue with Experts.

The event Rare Diseases in Latin America: A Dialogue with Experts was organized by “Enfermedades Raras del Caribe y America Latina” (ERCAL) in collaboration with the Chan Zuckerberg Initiative (CZI), and the Americas Health Foundation (AHF). Held on February 28, 2022- World Rare Disease Day- the event received the support from several patient association groups across the region, including Federación Argentina de Enfermedades Poco Frecuentes (FADEPOF), Federação Brasileira das Associações de Doenças Raras (FEBRARARAS), Federación Chilena de Enfermedades Raras (FECHER), Federación Colombiana de Enfermedades Raras (FECOER), Organización Mexicana de Enfermedades Raras (OMER).

Throughout round-tables 1 and 2, key opinion leaders discussed the landscape of rare diseases in Latin America, addressing challenges and opportunities in access, diagnostics, treatment, and research, in addition to regulatory and policy issues.

SPEAKERS:

• Dr. Marisa Aizenberg (Argentina) – Academic Director of the Health Observatory at the U.B.A. Law School.
• Dr. Gustavo Mendes (Brazil) – General Director of Medicines and Biological Products at the National Health Surveillance Agency (ANVISA).
• Dr. Gabriela Repetto (Chile) – Director of the Rare Diseases Program at the Faculty of Medicine within Universidad del Desarrollo, Santiago de Chile.
• Dr. Germán Escobar Morales (Colombia) – Vice Minister of Health and Social Protection.
• Dr. Santiago March (Mexico) – Coordinator of Strategic Projects at FUNSALUD.
• Natalia Messina (Argentina) – Director of Specialty and High-Price Medicines at the National Ministry of Health.
• Melina Maia (Brazil) – Secretary of the Permanent Mission of Brazil to the United Nations.
• Dr. Manuel Espinoza (Chile) – Head of the Health Technology Assessment Unit of the Clinical Research Center of the Catholic University and Honorary Visiting Fellow of the Center for Health Economics at the University of York.
• Dr. Nubia Bautista (Colombia) – Deputy Director of Non-Communicable Diseases of the Ministry of Health and Social Protection.
• Dr. Tanya Palacios (Mexico) – legal director of Genes Latinoamerica AC and belonging to the Judicial Power of the Federation in Mexico.

Recordings of the event in Spanish and Portuguese are also available:

Spanish: https://www.youtube.com/channel/UCyH_1r5FyJG7b-BWMRH5-4w/videos

Portuguese: https://www.youtube.com/channel/UCMQm_x-cPJ2OAjU0kTa2cEQ/videos

Link to report: https://americashealthfoundation.org/wp-content/uploads/ERCAL-Activity-Report-Web.pdf

Best Practices: Renewing Rare Disease Trials in the Age of COVID-19

With the shuttering of labs and the disruption of clinical trials, patient access to potentially lifesaving drugs was significantly restricted in the early months of the global pandemic. Resourceful and determined rare disease (RD) experts have devised creative and innovative solutions to overcome setbacks posed by the worldwide shutdown. AHF, APCO, and ICORD partnered to provide a webinar to share learnings and hear real world best practices on how RD trials in Europe, Latin America, and the U.S. are advancing once again. The Webinar “Best Practices: Renewing Rare Disease Trials in the Age of COVID19” was held on July 15th, 2020.

Participants, representing their work in The U.S., Latin America, and the U.K., included: Nancy Nahmias, executive director of clinical research at the University of Miami’s Sylvester Comprehensive Cancer Center; Dr. Mariana Rico, regional medical director for Latin America at the Americas Health Foundation; and Natalie Douglas, co-founder of RareiTi. Introductions and conclusions were provided by James Tyrrell (APCO), and moderation was facilitated by Joff Masukawa (Diligentia). The webinar was structured in an introduction, three presentations, and a chat-based Q&A session with the panel, with questions posed by the participants of the webinar.  A summary of the webinar was prepared by Dr. Mariana Rico. A recording of the webinar can be found here.