Rare diseases, common challenges
Sarcoma is a type of cancer classed as “rare”, with one in every 20,000 Spaniards contracting the disease.
The Sarcoma Policy Checklist (SPC) is a document produced by a European group of experts. Its aim is to help governments improve access to information and high-quality healthcare for sarcoma patients across Europe.
Lilly is a company founded over 140 years ago, which has developed more than 100 types of medicine and invests 5.595 billion dollars in R&D annually. It tasked iPg with studying the SPC’s application in Spain and presenting an action plan to ensure that the government takes action against sarcoma.
This was no easy task. Spain is a country with extensive regional diversity, which must be factored in to the approach, in addition to the general lack of knowledge regarding the disease and the reduction in size of the Healthcare Cohesion Fund, considered essential for effective action.
“iPg has led a very complex advocacy project on our behalf. They designed and implemented an outstanding roadmap, with the participation of patients and medical professionals, that the Spanish Ministry of Health is now adopting and making their own”
Medical professionals and patients, all at once
How do you collaborate with the government to improve healthcare for rare diseases?
To take on this task, we created a workgroup with experts from the Spanish Sarcoma Research Group (GEIS) and the Mari Paz Jimenez Casado Foundation (FMPJC), as well as a group formed of patients from the Spanish Association of Persons Affected by Sarcoma (AEAS).
Together we discussed how to implement the SPC’s recommendations. We also identified the key regional needs and defined priorities that would have a greater impact. The resulting roadmap sought the following from the authorities:
- The establishment of protocols for broad action from primary healthcare, and the provision of resources for Reference Centres to improve their efficacy.
- The implementation of a fast referral system and a specialized treatment protocol in hospitals throughout the autonomous regions of Spain.
- The development of an expert pathologist network for the improvement of sarcoma diagnostic quality.
Subsequently, we held various meetings with:
- A Ministry of Health advisor
- The Congress of Representatives Health Commission president and spokespersons
- Autonomous Region of Madrid representatives
We hosted presentations for all of these stakeholders, which included infographics and details of healthcare planning support. The latter included active input in public enquiries and support for autonomous planning.
We achieved greater visibility for sarcoma patients in Spain and raised awareness about their experience living with the disease by supporting associations in their meetings with authorities in the regions of Catalonia, Castilla-La Mancha, Extremadura and Castilla-Leon.
We capitalized on the steps taken in the autonomous regions by presenting our plan to the Madrid Region’s Department of Health.
Lastly, we delivered the roadmap to the Ministry of Health, with specific solutions to improve sarcoma patient healthcare quality.
All these steps enabled us to expand treatment access and improve healthcare quality for sarcoma patients, who are widely regarded to suffer from one of the worst types of cancer.