Advocacy and Patient Participation

I was very fortunate to be invited to represent the patient’s voice in three separate, relevant meetings. The meetings occurred one after the other, so I could attend all, although I have to admit, it was quite an intense week!

The first meeting was ISPOR LATAM 2019, held in Bogota, Colombia, to which I was invited to participate in two sessions. The first one was: “Patients Involvement and Advocacy in Health Technology Assessment in Latin America.” The meeting included patient representatives from Argentina, Brazil, Colombia, and Peru along with academicians, researchers, and government and Health Technology Assessment (HTA) representatives. We discussed the importance and the need for patient participation in HTA, the barriers we share in Latin America, and the future steps we can take to achieve patient participation in decision-making concerning health policies.

One result of the meeting is our new goal to develop a white paper describing the role of the patient’s participation in HTA, publish it, and also to implement it as a framework for patient organizations’ advocacy work in Latin America. 

I also attended an Educational Workshop for Latin American Journalists, organized by ROCHE, whose objective was to deepen their knowledge of the health economy, especially in HTA, and of the importance of innovation and personalized medicine in the Latin American context. Together with patient advocates from Colombia and Ecuador, we participated in the panel: “How to Involve Patients in Health Decision-Making.” We shared our experiences in our respective countries and gave the journalists a patient’s perspective on how to increase patient participation and the value we give innovation. 

Latin America Health TourI discussed the importance of the advocacy work done by patients in Chile, illustrating how they created social pressure to make the needs of the patients visible, especially regarding access to on-time diagnoses and treatments. Our efforts resulted in the promulgation of the Ricarte Soto Law. For the first time, patients can truly participate. In the process of the promulgation of the National Cancer Law, the President signed its approval. However, our job is not done. The patients are working fiercely for the special budget assigned to it. 

My principal takeaway from the ISPOR Conference was this: The importance of having the patients in the center of all health decisions has become evident, mentioned not only in the panels in which I participated, but in almost every session, and not only that, but also the value of the participation of patients as panelists in many sessions and forums. 

The next meeting was a Latin American Workshop of Cancer Patient Organizations, organized by ROCHE. This interactive workshop addressed the role of the patients and their organizations in the elaboration of health policies in Latin America. Invited to participate in a panel focused on sharing patient advocacy efforts, I shared the experience and achievements in Chile regarding the importance of the patient’s personal voice and social pressure in the process of creating two important laws: The Ricarte Soto Law and The National Cancer Law. 

Workshop participants were divided by countries, allowing us to analyze the special needs of each country and set concrete actions to be made to achieve solutions to them.

My principal takeaway from this workshop was this: Collaboration among patient groups and working together in setting common goals is vital.  Together we can have a stronger voice to achieve our participation in the decision-making on health issues, but we have to be very respectful in recognizing that each group has its characteristics, personality, and idiosyncrasies.  

The final meeting was SELNET 2019, the annual meeting of the Sarcoma European Latin American Network, held in Mexico City. SPAEN’s (Sarcoma Patient Euronet – LRG GIST partners in Europe) invitation was to represent the patients’ voice. SELNET is a four-year international research project of a collaborative model that receives support from the European Commission. Its main objective is to create a network of multidisciplinary specialists from Europe and Latin America as an answer to problems we commonly face in some countries. Such problems include: delay in diagnoses, limited access to specialists, inadequate funding for research, as well as identifying sarcoma centers of excellence. During the meeting, I was able to learn from specialists from Spain, Italy, France, Mexico, Brazil, Argentina, Costa Rica, and Peru.

A very interesting project that opens the possibility for Latin American sarcoma fellows and specialists of the countries involved in it is to work together with European specialists, increasing their capacities and knowledge and sharing experiences and case studies.

As in the previous meetings, SELNET addressed the importance of the patient’s voice in the patient’s health journey. Patient representatives are a bridge between the specialists and the patients, contributing real world data from patients living with a sarcoma diagnosis, and by acting as a channel for the dissemination of information.

As a patient and an advocate, the main value of my participation in these meetings was to be a voice for patients, to illustrate the importance of patient participation in health decisions, and to emphasize the value of patient organizations, not only as support groups, but also as important players in decision-making for health policies through their relentless advocacy work.

Piga Fernández
Author: Piga Fernández

Piga Fernández, Santiago, Chile, is a Global Relations Consultant since 2009 for the Life Raft Group , a GIST Patient Organization. She founded and is the Executive Director of Fundación GIST Chile, a nonprofit organization dedicated to support GIST and other gastrointestinal patients through education, information, emotional support and advocacy, with the goal of having them experience a better quality of life. Additionally, She is also the Coordinator of Alianza GIST, a consortium of GIST groups in Latin America. Her advocacy efforts in Chile have led to important changes in her country, impacting both legislative change and raising awareness for rare diseases. A GIST patient who was diagnosed incorrectly in 1995 with leiomyosarcoma, she understands the importance of correct diagnosis and access to treatment. She plays an integral role in working with our international patients, to assure they receive the quality of care necessary to survive and thrive.