Why and How should I support SPAGN? Global networking is essential for progress in sarcoma care

by Ornella Gonzato

It’s an honor and privilege to share my story about why and how I am involved in sarcoma patient advocacy. To date, that’s 17 years in advocacy, at national as well as international level, thanks to the close collaboration with SPAGN since its early beginnings in 2009.

Make sarcoma patients less ‘invisible’

In 2008, in Italy, I founded the “Associazione Paola per i tumori muscolo-scheletrici”, recently reshaped as “Fondazione Paola Gonzato-Rete Sarcoma” with the aim of improving sarcoma patients’ life. Paola, my sister, passed away because of an osteosarcoma at the age of 34, nine months after the diagnosis. Having a beloved with a sarcoma really affects the whole family. It was very frustrating and difficult to accept, both as a caregiver and as a biologist, that limited treatment options were available because of the rarity of the disease.

That was the time I decided I had to do something to make sarcoma patients less "invisible".

When I started my experience, the patient sarcoma world in Italy was a sort of wasteland:  except the gastrointestinal stromal tumour (GIST) community, whose history had evolved in a peculiar way, only a few small local sarcoma support groups existed, and none of them were involved in patient advocacy.

The essence of advocacy: Making a difference

Just a few words on the term “advocacy” to clarify its meaning. It has had many definitions and models over the years. It derives from the Latin term “ad vocare”, literally “call to oneself; call someone for help”. The concept of advocacy always implies the involvement of “a person that asks/pleads on behalf of another and, more precisely, acts on behalf of someone who is vulnerable and requests this”.[1]

Surely, healthcare professionals act as advocates for their patients, but there are aspects of advocacy in which patients or their representatives can provide a unique perspective, based on personal experience.

“Making the difference” highlights the strategic vision and summarizes the essence of advocacy: Expressing patient needs and being involved, as partners and at all levels, in finding solutions to them for the benefit of the entire disease-community.

Global collaboration is essential for sarcoma patients

In sarcoma care, the unmet needs are still manifold.  Patients face challenges that range from difficulties in receiving early and correct diagnosis to appropriate treatments, or timely access to new therapies. Research in this field is scarce.  And last but not least, patients are exposed to the feeling of isolation and inequity because of the rarity of disease.  Sarcoma patient advocacy is thus driven by challenges at various levels:

• healthcare systems/service organizations
• research
• timely access to new drugs/technologies

And this is precisely the scenario in which SPAGN acts for “making a difference” for all patients. Networking and collaboration across the world are essential keys to ensure a global impact of advocacy efforts that are inclusive of the different cultural, socio-economic, and healthcare settings.

Many good reasons why you should support SPAGN!

Thus, WHY should a patient or a patient group/organization support SPAGN, as a leading sarcoma patient advocacy global organization? There are several key reasons and mutual benefits:

• 

  Ornella Gonzato, founder of Italy's largest sarcoma patient advocacy organization opened SPAGNs annual conference in Rome, 2024

  Amplify your voice to create a powerful force for changing the status-quo. Your experiences, concerns and needs can be collected on a broader platform, enabling advocacy that otherwise could be difficult at local or national level.

• Raise awareness and increase visibility for the benefit of the global patient community as well as for your local/national group or organization. This means capturing more attention from researchers, healthcare professionals, health policymakers and the society at large about the disease, its symptoms, and the challenges that patients face as well as about your commitment and efforts in your community.
• Share resources in both directions with mutual benefit: you can access updated global information, knowledge and educational materials that can help build or refine your activity and you can provide valuable insights from your community.
• Improve connections and collaboration to share knowledge and best practices. This can help strengthen your organization and its capacity to address specific challenges faced by patients locally and at the same time to engage in global initiatives allowing them to have a stronger impact.
• Capture research opportunities and accelerate research: Supporting a global advocacy organization helps access to latest research advances as well as to worldwide clinical trials. In addition, it offers you the possibility to provide your insights and inputs for developing an even more patient-centric research.
• Improve access to high-quality care by advocating for better healthcare organization services (networking and specialist centers), high-quality treatment standards and equitable access to treatments for all patients worldwide.
• Build a stronger sarcoma community by bringing together all stakeholders, peers, researchers, regulators, industry and engaging in joint actions as much as possible, avoiding the sense of being alone.

How to get involved? Six tips to start with

Of course, there are several ways to support SPAGN in its global advocacy effort. Here below some of them:

1. Participating in surveys to better understand disease impact and treatment outcome and build evidence-based advocacy to help shape better solutions and care strategies.
2. Supporting awareness campaigns by spreading and amplifying their message.
3. Sharing knowledge resources by a ripple effect in your national community.
4. Providing valuable insights and inputs from your local/national experiences and challenges.
5. Donating or fundraising for global patient research efforts or specific sarcoma type patient needs.
6. Sponsoring awards supporting the SPAGN effort in celebrating every year the best patient projects as well as in strengthening the sense of belonging to a common global “home”.

As a matter of fact, I am proud to have sponsored the SPAGN Advocacy Award 2023 and the upcoming “Paola Gonzato Award”. The latter is specifically focused on bone sarcomas and aims at stimulating this still-fragmented community.

In conclusion, supporting SPAGN can “make a difference” for you, both as a patient or as a patient group/organization, as well as for the global community. Collaboration and networking can enhance your role and give visibility to your efforts, potentially accelerate research and influence policy changes. At the same time, your support fosters hope for all patients by strengthening a conducive environment as that of SPAGN’s global network.

 

[1] O. Gonzato, K. Schuster: The role of patient advocates and sarcoma community initiatives in musculoskeletal oncology. Moving towards Evidence-Based Advocacy to empower Evidence-Based Medicine. Journal of Cancer Policy 36 (2023) 100413.

Photo credits:  Uli Deck,  Ornella Gonzato