An award-winning ‘Manifesto against Sarcomas’: ASARGA campaigns against inequality in sarcoma care in Spain

by Natalia Fernández

In 2021, Iara Matiñán and Carolina Castiñeiras, two sarcoma patients founded ASARGA (Sarcoma Patient Association Care Group) with the aim of serving their home region in northern Spain, Galicia, which was on the periphery of specialized sarcoma centers. Their ambition was to provide services to alleviate the difficulties for sarcoma patients who have not been fortunate enough to live near an expert center in a country as territorially and administratively complex as Spain. Fortunately for all patients in our country ASARGA ceased to be a regional project and now provides coverage to patients anywhere in Spain and even in parts of Latin America.

How to ensure access to specialized sarcoma care across the country? 

Beyond a centralized healthcare service, each autonomous region in Spain has the power to make its own decisions in the healthcare field according to the needs and characteristics of its population. This has certain but also quite a few disadvantages, especially when it comes to issues that require a unified response and do not involve privileging some patients over others for geographical - and political - reasons.

Therefore, ASARGA started to provide services specifically customized to the needs of sarcoma patients in Galicia such as case management, social work, psycho-oncological counseling, physiotherapy and nutrition advice. Over time, the project not only expanded geographically but also gradually became more professional, based on the very true belief that it is not only patients who have to run such a complex organization, but that they also need a team of professionals to manage patient cases and maintain fluid relationships with sarcoma specialists (oncologists, surgeons, pathologists, radiologists, etc.) and pharmaceutical companies interested in a rare and heterogeneous disease such as ours.

An advocacy and lobbying project was needed

To these fundamental pillars, another is added however: the political one. Because patients sometimes wander in the fog of legal non-existence if there are no policies and commitments that support, encourage and join us in our challenges, which are many. It is precisely this aspect - taking the debate to the ‘political heights’ - that has earned ASARGA the first prize in this year's Advocacy in Action award of SPAGN.

The current president of the association, Mayte Deus, has been one of the main driving forces behind this initiative. She explains the importance of being present on political agendas because, otherwise, the social invisibility of sarcoma patients would be compounded by the indifference of those in power:

“Getting patients from Galicia and other underserved regions referred to one of the eight Sarcoma Reference Centres[i] in Spain was a goal from the very beginning. Achieving this required reaching political decision-makers, which required a strategy. So, we got down to work and drafted a non-binding motion that we took to the parliamentary group that made up the health committee for the Socialist Party, which held the ministry in that legislature.

In March 2023, we got the Non-Legislative Motion passed unanimously by all the groups in the Chamber. To continue raising awareness of the problems faced by sarcoma patients, we drafted a Manifesto against Sarcoma that was supported by all the associations, foundations, scientific societies and doctors of the Sarcoma Reference centers  and has been supported by more than 3,000 signatories.

Nowadays, we continue to meet with the health councilors of the autonomous governments to raise awareness of the Non-Legislative Motion and the Manifesto and to request their collaboration in ensuring that patients are referred to the Sarcoma Reference Centers.  Whenever there is any change in the government affecting the area of health, we approach the newly appointed to demand compliance with the approved Non-Legislative Motion.

We have begun a round of meetings with all those responsible for health in all political groups, held two conferences in the Congress of Deputies with the participation of doctors, scientific society, patients and politicians, to put the reality we face every day and the inaction of political leaders on the table. We continued with meetings, now also in the Senate”.

On the right track

Sarcoma is not only a rare disease that affects the individual patient, but also a political issue of (inter)national importance, where we need all stakeholders to be committed, knowledgeable and responsible. The Advocacy in Action Award by SPAGN shows that ASARGA is on the right track.

 

[I]. Sarcoma Reference Centers (CSUR Centros de Referencia en Sarcomas) are currently available in Catalonia (3), Madrid (2), Andalucia (1) and Valencia (1) whereas the remaining 13 regions remain without such centre. https://www.sanidad.gob.es/profesionales/CentrosDeReferencia/docs/CSUR_designados_PTTP_enero25.pdf

 

Credits:  Photo of Mayte Deus and map graphic provided by ASARGA;  Photo of Rosabel Rodríguez Ku by SPAGN, artwork kindly provided by Natalia Fernández to SPAGN for publication.