Latin American Patients Congress Session Descriptions

Session 1 - Latin America and Genomic Medicine: Personalised and Stratified Medicine

We live in exciting times. The convergence of genomics and digital health technologies (partly supercharged by the COVID-19 research collaboration into the immune system) is giving us more patient and people centred health care solutions. Innovation is making care more patient-centric, effective, and humanistic.

With all the innovation at our disposal, we are able to have a high-resolution view of each patient and their disease and design precise care that is right for this patient. One size fits all health services are now on the way out. Innovation also helps us diagnose diseases at the earliest and result in better outcomes.

Patient preferences suggest that we want to be diagnosed early and accurately, and then our treatments designed to treat our specific disease type, with few side-effects that can impact our employment, social and family life. Most importantly, we want the progress of our treatment assessed regularly and accurately to see if it is working or needs have changed. This session explores the potential for early and accurate diagnosis, use of biomarkers and the design of immunotherapies and targeted therapies to match the patient and their disease.

Session 2 - Latin America Humanising healthcare

This session explores how we can have a win-win solution for the patients, society and the State in humanising healthcare.

Humanising healthcare aims to re-build sustainable healthcare systems and improve personalised healthcare by working collaboratively with patients and all stakeholders to create a more personalised approach. The International Experience Exchange with Patient Organisations (IEEPO) launched a position paper in 2021 to drive change and transformation of healthcare systems. It contains an analysis of certain areas that the IEEPO community and the contributors see as pressing and in need for change, and also calls to action:

1. Putting people at the heart of healthcare 2. Humanising health literacy 3. Humanising digital healthcare to build capacity by harnessing the power of patient data 4. Humanising healthcare to focus on prevention and cure with a new 50:50 model 5. Prioritising diversity, equity and inclusion to humanise approaches to healthcare.


Session 3 - Medicines and Health Devices Regulation

This session will look at what good participatory medicines regulation systems are, how they benefit patients and what role we can play in them. It will also address how patients can engage with regulatory bodies and co-create and build back better regulatory ecosystems.

Both the European Medicines Agency (EMA) and the Food and Drug Administration (FDA) have clear frameworks to encourage and engage patients in a meaningful manner in medicines regulatory affairs. The EMA now encourages patient engagement to become a parallel event with both the EMA and the European Network for Health Technology Assessment (EUnetHTA) working on innovative health technologies simultaneously. This aims to allow medicine developers to obtain feedback from regulators, health technology assessment (HTA) bodies and patients in the European Union (EU) Member States on their evidence-generation plans to support decision-making on marketing authorisation and reimbursement of new medicines at the same time. Patient engagement is important in both the regulatory and HTA processes to improve access. 

Regulatory Reliance is when one National Medicines Regulatory Authority (NMRA) in one jurisdiction may consider and give significant weight to and partially/wholly rely on evaluations performed by another NMRA or trusted institution in reaching its own decision. The relying authority remains responsible and accountable for decisions taken even when it relies on the decisions and information of others.

Session 4 - Health Technology Assessment and Value Based Healthcare

Health is a political choice. Universal Health Coverage by 2030 (UHC 2030) investment choices are being made within a complex post-COVID competing ecosystem. How will innovative evidence-based medicines, services, health devices and other health technologies be procured to ensure that countries can extend their UHC 2030 to cover most of their population, giving them more appropriate and effective healthcare services and medicines, and reducing their out-of-pocket contributions? How do you then decide what is reimbursed? 

This session aims to raise awareness on what health technology assessment (HTA) is and how Latin American patients can engage in the process to improve access to innovative healthcare services.   The World Health Organization says that HTA refers to the systematic evaluation of properties, effects, and/or impacts of health technology. It is a multidisciplinary process to evaluate the social, economic, organizational, and ethical issues of a health intervention or health technology.

This session will look at how patients and governments can work together to make investment decisions in reimbursement to attain universal health coverage by 2030 in an efficient and effective manner so that we have access to innovative healthcare services, devices, and medicine, and accessing this healthcare is not financially ruinous. 

Session 5 - Rare Diseases: Latin America and the UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families”

This session will discuss the importance of the UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families” and the Ricarte Soto’s Law for patients and their families. It will also address the differences between the Resolution and the Law and explore whether it is better to have a regional global resolution or national laws to protect the rights of patients.

Adopted by all 193 UN Member States in 2021, the UN Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families” recognizes the need to promote and protect the human rights of all persons, including the estimated 300 million persons living with a Rare Disease worldwide. This UN Resolution was only possible because of the coordinated and robust advocacy of the rare disease civil society groups worldwide led by Rare Diseases International (RDI), the NGO Committee for Rare Diseases, and EURORDIS – Rare Diseases Europe.

The Ricarte Soto’s Law created a state funding in Chile for the good of patients with high cost diseases. The Law is named after journalist Ricarte Soto, who led a movement calling for effective healthcare coverage with a focus on high cost diseases. 10,000 people and more than 50 patients’ organizations supported the creation of the law, including IAPO Members: Chilean Psoriasis Organization, GIST Foundation Chile, National Corporation for Transplantation Support, Maxi Vida and the Cancervida Foundation.


Session 6 - Health of Indigenous Peoples in Latin America

Indigenous peoples in Latin America faced enormous challenges during COVID-19. There are structural and other social determinants that haven’t been resolved since the Decade of the Indigenous Peoples 2008. 

In this session we will discuss the health needs of indigenous peoples in Latin America and the innovation in meeting these needs. We will learn about PAHO - Pan American Health Organization’s efforts on promoting the cultural diversity and health of these peoples, as well as how indigenous organizations of the Amazon Basin have navigated general access problems amplified by the pandemic.


Session 7 - First Things First: Safe and Free Primary Healthcare as a Basic Human Right

This session explores how patients, caregivers and patient advocates can contribute to achieving the goal of accessible, affordable and safe primary healthcare through partnerships at international, regional and national level.

For the past 40 years, the Declaration of Alma-Ata has guided efforts in the Region of the Americas to make health for all a reality. Primary Healthcare (PHC) has been the cornerstone of the development of health systems and support to member states by PAHO. Member States have a long-standing commitment to the Declaration’s call for reaffirmation of the right to the enjoyment of the highest attainable standard of health, equity, and social justice; the responsibility of governments to achieve health for all; the need for a new way of organizing health services; the need to make knowledge and health services accessible to people and communities; and the need for participation and community involvement.

The pandemic has both disrupted the progress, but at the same time provoked faster implementation of the above commitments. Following up on the resolution WHA72.2(2019), during the post-pandemic phase, WHO and PAHO are committed to strengthening the support to countries to “radically reorient health systems towards primary healthcare” with a view to achieving universal healthcare. However, the global health leadership must entail the voice of patients and patient advocates, who by their lived experience and everyday work can significantly contribute to the processes of core normative guidance, data, research and innovation in support of national efforts towards achieving universal health coverage and health security goals.