BUILDING COMPANIONSHIP IN DIFFICULT TIMES
BY RASHI KAPOOR, SACHIN SARCOMA SOCIETY
The Sachin Sarcoma Society is a patient support group in India that was formed in 2018 by a group of sarcoma survivors and caregivers, including myself. What inspired us to come together and create a support group to help other sarcoma patients was our shared experiences of misdiagnosis, lack of awareness about the disease and logistical problems accessing care. That was before we were treated by Dr Sameer Rastogi, Additional Professor at the All India Institute of Medical Sciences (AIIMS), a public hospital in New Delhi. We formed this patient group with the support of Dr Rastogi.
Our mission is to spread awareness about rare tumors like sarcoma, desmoid tumors, and gastrointestinal stromal tumors (GIST)—as well as to build companionship with affected families. We provide emotional, financial, and logistical support to patients, and we want to remove the fear associated with these diseases. The Sachin Sarcoma Society offers counseling for patients who are struggling emotionally. We run a dedicated helpline available seven days a week that has been in operation since the beginning of our organization. We also run regular social media educational campaigns, visit patients in the AIIMS hospital to help and counsel patients, and collaborate with researchers.
Helping the very poor to deal with sarcoma is a dire need
In one of our most impactful advocacy programs, the Sachin Sarcoma Society helps to cover costs of scans and medicines for those who cannot afford them. When needed, we assist with arranging accommodations for out-of-town patients. We also run an initiative called "Donating Medicines," where patients and their caregivers can donate medicines they no longer need (in the case of disease progression or a patient passing away) to patients who cannot afford medications on their own. This reduces waste and helps patients reduce their financial burden. Last year alone, this program helped nearly 75 patients who could otherwise not afford to buy medicines. They have been helped multiple times and provided medicines during the course of their treatment.
Challenges of patient support during the COVID pandemic
As with every country, when the COVID-19 pandemic hit, it became very difficult for us to support patients and caregivers in the usual ways. But we were determined to continue our mission. We initiated weekly patient support group meetings on Zoom every Sunday at 4 pm, where patients could connect with medical oncologists, pathologists, dietitians, psychologists, gynecologists, dermatologists, mental health advocates, and motivational speakers. They also provided meditation sessions to help relieve stress, anxiety, and depression, and to spread awareness about the disease. Each one of these specialists generously volunteered their time to the cause, and the weekly patient support group meeting served as a vital lifeline for sarcoma patients throughout the pandemic.
Creating a sense of connectedness and offering concrete help – online!
Our weekly patient support group meetings were such a success, we decided to continue the practice as pandemic restrictions eased! To date, the Sachin Sarcoma Society has organized more than 150 virtual sarcoma support group meetings. Patients join from across the country and even abroad, forming connections and building bonds with other patients fighting the same rare tumors. We also created WhatsApp groups for sarcoma, desmoid tumors, and GIST, as well as 31 groups that are divided by state and disease to foster better connectivity between patients.
Patients often tell us how important it is for them to feel that they are not alone with their rare disease; they can learn and share their concerns every Sunday, if they like. Topics of recent meetings have included healthy diet tips for sarcoma patients, managing side effects of chemotherapy, scan anxiety, and raising funds through crowdfunding as well as addressing the concerns of “Why me?” for newly diagnosed sarcoma patients, or whether patients need empathy or sympathy and so on.
Our groups are open to participants from any country, and we have seen participants from Afghanistan Australia, Bangladesh, Cameroon, Canada, Dubai, Nepal, Portugal as well as Non Residents of India in USA.
People interested in joining Zoom or WhatsApp support meetings are invited to contact the Sachin Sarcoma Society through our website to receive the respective invitation link.
Social media plays a significant role in reaching more patients in need. As pictures of the support group meetings were shared, more and more patients started contacting the support group and were helped emotionally and logistically. We helped connect them to the right sarcoma specialist at the right time, which got them into treatment faster and improved their prognosis.
A prize-winning initiative that will remain beyond the COVID-19 pandemic
Even though the pandemic has settled down, the support group, which is run by survivors, patients, and caregivers, will continue our virtual meetings because of the overwhelming positive feedback we have received from patients. We are proud that this work was recognized by the Sarcoma Patients Global Network (SPAGN) last year, and we were awarded the first prize for an Innovative COVID-19 related project in June 2022. This initiative, which was born out of necessity during a once-in-a-lifetime global health emergency, will remain an important pillar of our work in the future.
Volunteering for awareness and companionship
To date, the Sachin Sarcoma Society has supported 5,500 patients, including 4,175 sarcoma patients, 200 desmoid patients, and 125 gastrointestinal stromal tumor (GIST) patients. The organization functions with a core team of 5 volunteer staff members and the sarcoma specialist Dr Sameer Rastogi at AIIMS. But we function as a well-connected group where all patients are volunteers and help and support each other happily within their possibilities. In terms of paid staff, we have just one full-time paid nurse and three part-timers.
Thanks to the selfless efforts of the many volunteers, the Sachin Sarcoma Society has become a beacon of hope for patients with rare tumors like sarcoma, desmoid tumor, and GIST. Their mission to eradicate the fear associated with these diseases and provide support to those affected has been a resounding success, and their work continues to impact thousands of lives every day by raising awareness and building companionship between patients while instilling hope, positivity, and courage.