The role of civil society in advocating for timely diagnosis: Case study from Brazil

Dr Maira Caleffi, Volunteer President, FEMAMA Brazil, illustrated GBCI’s second target on the 60 days interval to diagnosis by presenting how civil society has been instrumental in advocating for timely diagnosis in Brazil.

FEMAMA is a federation of organisations advocating for better access and adequate treatment accross the country. Three major laws have been enacted in Brazil as a result of the efforts of civil society including FEMAMA demonstrating the importance of advocacy in creating policy for breast cancer patients:

The 60 day law to access treatment (2012)

Between 2009 and 2011, approximately 65.4% of all new cases of cancer began treatment between 60 and 366 days from their date of diagnosis. The 60 day law established the standard that patients receiving care through the Brazilian insurance system must begin treatment within a maximum of 60 days from the date of the pathology report when the cancer was first diagnosed.

Table Discussion

Compulsory notification of cancer law (2018)

FEMAMA has been committed to implement a mandatory and unified cancer registration system since 2015. In 2018, through its advocacy efforts, it was mandated that new cases of cancer should be notified in real time in public and private networks of healthcare.

The 30 day law to receive diagnosis (2019)

Timely breast cancer diagnosis should reduce delays between the time a patient first interacts with the health system and the potential receipt of a diagnosis. With this in mind, the 30 day law established the maximum period of 30 days to receive a diagnosis after an exam was performed and when cancer is suspected.

Globally, as an overall standard, the WHO GBCI recommends 60 days as the maximum time for the diagnosis interval.

What would it take to achieve the target of 60 days to complete evaluation, imaging, tissue sampling and pathology in the setting in which you operate?

Discussions on this topic also show commonality across the different regions represented. The main actions identified by participants to support timely diagnosis in LMICs included (in order of importance):

• Build the capacity of healthcare workers. Primary care workers can be better trained on recognising symptoms, on patient navigation, and alternative models, such as nurses performing biopsies, should be explored. More pathologists and radiologists are also needed to improve the diagnosis interval. Finally, telemedicine and telepathology can help address the human resources gap.

• Work towards having a comprehensive policy in place supported by political will, with budget allocated for data and diagnostic services. Include the diagnosis interval of 60 days in the NCCP with relevant data and key performance indicators to monitor the progress, and ensure insurance coverage is available for cancer diagnosis.

• Develop the necessary infrastructure for timely diagnosis including: facilities, equipment, high quality pathology services with immunohistochemistry capacity, timely reporting and sample transportation. The importance of having rapid diagnosis pathways supported by patient navigation programmes was emphasised by several of the group discussions.