Latin America’s patient organisations are today playing a more important role than ever before in developing solutions to the continent’s most pressing healthcare challenges. Given the healthcare gaps that persist, LatAm’s rich tradition of democratic participation, and industry stakeholders’ continuously stated commitments to including the patient voice in their decision-making processes, this trend looks set to continue in the coming years.
Patient organisations are globally defined as legitimate stakeholders that add value in civil dialogue in health-related policies. Through representation, mobilisation and empowerment, patient groups combine individual and social actions to gain political commitment and public support for specific patient and general population health issues. They are experts in channelling the voice of patients by representing patients’ interests in a united, coherent, and consistent way which enhances the overall balance and nuance in policymaking.
As Rodrigo Fernandez, VP for Teva’s LatAm Cluster and GM for Mexico notes, a multisectoral approach which includes such groups brings forth myriad benefits in driving patient access. “There are few examples of a true multifactorial approach to healthcare,” he opines.
The best examples of things that have happened in Latin America around healthcare have been when multiple parts of the ecosystem come together and agree on something to move forward
Rodrigo Fernandez, Teva
“For example, the fact that in Brazil for the reimbursement of oncology medications in the private sector, patient groups are involved in the evaluation of therapeutics. Mexico has a completely different approach in which the government takes a more centralised approach without involving the appropriate stakeholders. The best examples of things that have happened in Latin America around healthcare have been when multiple parts of the ecosystem come together and agree on something to move forward. We saw that a little bit with oncology and HIV treatments in Brazil and legislation that passed in Chile and in Mexico too.
While the USA and Western Europe undoubtedly boast the world’s most developed and well-funded patient advocacy groups, the sentiment among LatAm industry stakeholders is that their own continent’s equivalents can hold their own and make meaningful contributions to positive health outcomes.
“Patient groups are very well organised in LatAm,” proclaims Sandra Ramirez, Latin America area lead for Astellas. “There are many kinds of patient organisations, that go from educational organisations to advocacy groups. Most of them also have alliances with European or US organisations.”
She continues, “They take initiative and have contact with governments, therefore, they do have a voice and they participate in different discussions within the public arena. They have taken part, for example, in the creation of the healthcare plan in Colombia. However, I think there is an opportunity for them to work together on projects with regional impact across LatAm.
Roche’s LatAm Area Head Rolf Hoenger also speaks positively of patient group impact in Colombia, while highlighting Brazil and Argentina as two other shining lights. “In these three countries, patient groups’ level of organisation is very strong, and they go beyond merely assisting individual patients by using their voice to advocate for groups of patients more broadly to governments. We have always been keen to work with such groups and enhance the patient voice within the drug development process.”
One example of a well-developed group is Fundación Cáncer Warriors de México, which works around the legislation in Mexico to advocate for cancer patients and their families. We can take the learnings generated by a group like this and share it with others
Sarah Aiosa, MSD
Hoenger adds, “Governments and associations also need to be of sufficient quality to make these discussions fruitful. In the past, when compliance allowed, I engaged in roleplaying exercises with patient organisations to help improve their argumentation, crystallise their interests, and allow them to better communicate the data they collect.”
The work of Mexican groups has caught the attention of Roshel Jayasundera, managing partner of global patient access consultancy Axios International. “In LatAm, patient associations are very well established and have played a pivotal role in driving policy-shaping efforts. To give you a recent example, the new cancer law currently being drafted in Mexico has been steered forward by local non-governmental organisations (NGOs).
“Additionally, Axios International has a memorandum of understanding with UNIDOS, a Mexican NGO focused on Hodgkin’s Lymphoma. We began collaborating with them because we realized they would help increase awareness among the broader public on the availability of a patient assistance program.”
MSD’s SVP and President for Latin America Sarah Aiosa chips in, “some groups are certainly more advanced than others, but I look at the lack of development in certain groups as an opportunity. One example of a well-developed group is Fundación Cáncer Warriors de México, which works around the legislation in Mexico to advocate for cancer patients and their families. We can take the learnings generated by a group like this and share it with others.”