Post updated 9/18/20 (Original post was 9/1.)

LRG International GIST Patient Organizations MeetingOn Friday, August 21, The Life Raft Group hosted a virtual meeting entitled “GIST Patient Advocacy during the ‘New Normal’ of the COVID 19 Pandemic.” Designed for representatives from global GIST advocacy organizations, its purpose was to provide a forum for the international community to discuss challenges they are facing, and to share experiences and best practices.

In these uncertain times, as we all adjust to the circumstances brought about by the global COVID-19 pandemic, GIST patients and their caregivers continue to need information, support, and a sense of community – perhaps now more than ever. The necessary lockdowns, shielding, and social distancing make it especially challenging for GIST patient advocates and organizations to meet these needs.

Discussion topics included: challenges patient organizations currently face, issues patients are dealing with as a result of the pandemic (e.g. mental health issues, changed behaviors) as well as preferred ways of communicating with patients and effective coping strategies.

Eleven country representatives, two GIST Mentors, and nine patients shared their perspectives and presented helpful solutions for overcoming these new challenges.

Some responses from attendees:

“The Life Raft Group Virtual Meeting for Patient Organizations working with GIST was all it promised to be. We at were so happy to join other advocates and share our experiences, challenges & best practices. Thank you, Amy. How wonderful to see you all and hear your voices after so long!”               –  Viji Venkatesh, Friends of Max

“It was a pleasure to be part of the webinar and meet you virtually on Friday and learn and discuss about various challenges that are faced by patients during these tough times of pandemic. Thank you for always being so supportive and helping GIST patients all across the globe. Even our GIST patients from India get a lot of support from Life Raft in terms of information on GIST or medicines that are provided through compassionate basis programs. We are able to support and guide patients because of support from Dr. Sameer Rastogi.”
– Rashi Kapoor, President, Sachin Sarcoma Society.

Although virtual, the group agreed that continuing to network inspired a sense of hope, that individual organizations are not alone in these challenging times.

          Amy Bruno-Linder, LRG liaison in Austria, added the following commentary in the meeting in early September. Posted updated 9/18/20.

Summary of Virtual Meeting for Global GIST Advocates hosted by The Life Raft Group

On Friday, August 21, The Life Raft Group hosted a virtual meeting for representatives from Global GIST advocacy organizations. The meeting, which was attended by 11 country representatives, two LRG GIST Mentors, and nine patients and caregivers, provided a forum for the international community to discuss challenges they are facing and share best practices.

Following a warm welcome by Sara (Rothschild), Piga (Fernández), and Amy (Bruno-Linder), the participants briefly introduced themselves. The first topic to be addressed was the COVID-19 pandemic and its effects on GIST patients. Several advocates reported that none of the patients served by their country’s organization had become ill with COVID-19 so far. The possible reasons for this were discussed, and it was surmised that GIST patients are sensible and are taking the necessary precautions to keep from getting infected.

Regarding the more indirect effects of the pandemic, some advocates reported that some patients are afraid to go to the hospital or take public transportation and have postponed or even skipped their medical appointments. This situation can be particularly problematic for those patients who normally get their medication at the hospital, as is the case in Mexico, as Rodrigo (Salas) pointed out. Karla from Perú said that their group provides patients with safe transportation to doctor appointments by organizing and paying for drivers. Piga from Chile explained that their organization had arranged for doctors to send prescriptions to patients via WhatsApp in order to spare them the trip to the doctor. This measure was welcomed as an innovative way to reduce the burden on both the doctor and the patient. All agreed that patient advocates can serve as a bridge between patients and their doctors.

Regarding communication with patients during the present situation, advocates reported using a variety of means: WhatsApp groups are common, as are phone calls, video chats, and newsletters via email. The advocate from Kenya stated that they send SMS texts in bulk to patients who live in rural areas without internet access. While meetings with patients should be held outdoors whenever possible, the participants agreed that the pandemic was a time for advocates to embrace technology.

As lockdown and the need for social distancing have also impacted the mental health of patients, the advocates also discussed providing needed emotional support. When Norman Scherzer joined the call, he spoke of his wife, Anita’s long GIST journey and the inspiring story of her success with Gleevec. He stressed the importance of communicating to patients that they should get a COVID-19 vaccine when they become available, and that they should be vaccinated against both the flu and COVID-19. He pointed out that more people are dying from cancer than from COVID-19. Norman also reminded all of the participants of the importance of providing hope. When Viji from India (Friends of Max) joined the meeting she echoed this idea, speaking eloquently about the role of patient advocates in these difficult times: advocates can inspire patients to mobilize their “deep inner reserves of strength”.

As the meeting closed, all of the participants agreed that it had been a very special opportunity to connect with GIST patients, caregivers, and advocates around the world.

See list of GIST/Sarcoma Patient Organizations Worldwide