At the GI Cancer Institute, we recognise that it takes a community to make a lasting impact. By working with other patient organisations, we ensure that we can truly change outcomes for GI cancer patients.
Shari Reid, Member of our Consumer Advisory Panel and GIST survivor, introduced us to the Life Raft Group. The Life Raft Group began as a support group for patients and caregivers of GIST, based mainly in the United States. Today, it has grown into a large organisation, working to to enhance survival and quality of life for people living with GIST through patient-powered research, education and empowerment, and global advocacy efforts.
Sara Rothschild is the Executive Director of the Life Raft Group and a leader in patient advocacy. We sat down with her to talk about the Life Raft Group and advocacy with patient communities, including for paediatric GIST.
How would you describe Life Raft Group to GIST patients, caregivers and loved ones?
Life Raft Group is literally our community’s “life raft”. When a patient is diagnosed with a rare disease they have never heard of before, it can be quite overwhelming. Finding our organisation to help provide support, mentorship, and guidance can be an empowering experience for the patient and their loved ones. We are the number one source of information for the GIST patient community and we ensure that no one has to face GIST alone no matter where they are in the world.
Congratulations on taking on the role of Executive Director at Life Raft Group. What is something about doing advocacy for GIST patients and working with patient communities that you hadn’t expected? Do you have any particularly memorable moments or experiences?
I did not expect to be taking on health authorities to get drug access for GIST patients. Our mantra from the beginning is to work on saving one life at a time but when there is a systemic issue, we try to mobilise the community to raise their voice to make a meaningful impact. One of the most memorable experiences was with a country that was waiting to launch the sunitinib trial and the patients were waiting an unusually long period of time for the trial to activate. We decided to write a strong letter to the head of the institution and shortly after we got a letter back from their lawyers threatening us. However, the next day, a miracle happened and the trial got started in the country. It takes a lot of persistence and great effort to make a difference.
You’ve been involved in a few initiatives on paediatric GIST – are there lessons you’ve taken from your experience there that the wider GI cancer research and advocacy can benefit from for the future?
I learned a few lessons from working on the paediatric GIST initiative:
1. Breaking down silos is essential, especially when working with a rare subtype of a rare disease. The more tissue and data you can share will help us all accelerate our efforts to make progress for that disease.
2. Collaboration by creating an international consortium is key. The Life Raft Group served as the honest broker by bringing multiple stakeholders together to tackle paediatric GIST.
This gained attention by the Biden Cancer Initiative back in 2018. The Life Raft Group held regular meetings with the Consortium to discuss progress or setbacks that investigators and clinicians were experiencing and pledged to continue to work together in the future. With that collaboration, xenograft and cell lines were created, clinical trial networks formed with new investigative studies as well as the creation of guidelines.
My advice to impart to the GI cancer research and advocacy community is to forge strong partnerships, communicate clearly and continue to have the patients advocates at the decision making table so that the patient is always centrally focused among the team.
How did you first get involved with GIST patient advocacy?
I came to the Life Raft Group 17 years ago without a connection to GIST, but my passion was immediately sparked to help support these patients.
To you, what does it mean for a patient advocacy community to be international?
When you are working with a rare disease, it is so important for the patient advocacy community to be international. We are here to support each other’s efforts, learn from one another, build capacity, and strengthen our voice with more numbers.
13 July is GIST Awareness Day. This year’s theme is ‘Time to Tell the Stories’.
Find out more about GIST Awareness Day