How we continue providing emotional support for people facing cancer throughout COVID-19
Amid a global pandemic, we are continuously dedicated to finding innovative solutions to provide patients with the care and support they need. In these isolating times, patient meetings are critical. They offer a safe space for patients to meet with our team and physicians, and have a community they can turn to.
Our South Asia team holds over 10 meetings per year throughout the region, where thousands of patients, physicians, and caregivers join to educate, learn, and turn to for support. With COVID_19, we quickly pivoted our large-scale meetings into the virtual space.
In India, we hosted our Patient Support Group meeting for Chronic Myeloid Leukemia (CML) and Gastrointestinal Stromal Tumor (GIST) for patients from Kolkata and Bangalore.
Our meetings feature a panel of our partner physicians to answer questions from patients and caregivers in a safe space. Cancer in India is highly stigmatized, causing people to feel afraid of sharing their experiences with cancer. Our patient support group meetings aim to reduce stigma and normalize a cancer diagnosis.
“When The Max Foundation decided to do its first Virtual Patients Support Group meeting with us, I had no doubt that it would be well received by the CML survivors, but that we would cross all limits of registrations even before the meeting started was not what I had anticipated. It is the dedication of the organization in making and maintaining a personnel connect with the CML community that is instrumental in the success that these meetings have received across the country.”
– Dr. Reena Nair, who was pleasantly surprised at the turnout.
It is encouraging to see our patients respond positively to being offered a space to have a community, especially during a pandemic.
Even before COVID-19, we were committed to programs that care for the emotional wellbeing of patients. In Malaysia, we launched our Peer-to-Peer project.
The Peer-to-Peer project connects long-term survivors of CML to newly diagnosed patients. For a long time, patients living with CML visited newly diagnosed patients at their medical appointments to meet in private counseling rooms and foster a feeling of community and encouragement.
“It gives so much fulfillment to be able to be with patients emotionally, holding their hand and walking the cancer journey together – to let them know they are not alone,”
– Shirleen Low, The Max Foundation program officer in Malaysia.
Although we are disappointed that we cannot hold in-person meetings, we have found some advantages of a virtual format. One of our young CML patients, a university student, was unable to attend in-person meetings because of her studies.
However, once she found out we were holding the meetings online, she was thrilled to be able to participate and share her stories and experiences with other survivors. She shared:
“We find strength together. In this journey, we talk and walk together.”
In every corner of the work, people are finding new ways to connect. Connection and community are vital to who we are, especially when facing a chronic disease with an uncertainty of what tomorrow may bring.
Amid of COVID-19, it is more important than ever that we care for the emotional well-being of ourselves, our loved ones, patients, and caregivers by providing myriad opportunities to connect.
We look forward to hosting many more virtual support groups, for as long as we cannot meet in-person. In the face of virtual meetings, we won’t stop advocating for dignity and hope in the face of cancer—no matter where you live.
The Max Foundation is a leading global health nonprofit organization dedicated to accelerating health equity. For 27 years, Max has pioneered practical, scalable, high-quality solutions to bring life-extending treatments and patient-centered health care to more than 100,000 people living with cancer and critical illness in low- and middle-income countries. Max believes in a world where all people can access high-impact medicines, where geography is not destiny, and where everyone can strive for health with dignity and with hope.
Cancer is a life-changing event; not just a medical condition. When cancer undoubtedly affects the patients, it also changes the lives of people around them. Having cancer may change patients’ priorities, causing them to make different life choices.
I found myself reflecting about vulnerability. In a way, vulnerability is an impact. After hours of phone calls throughout the year, families have opened themselves up to me. The vulnerability is not just a spur of the moment but hopefully built on mutual trust and respect. I gain a new perspective about vulnerability – it draws out your strength when you respond to it with care.
Rising Sun 2018 has more than 60 participants from 18 countries, consisting of patient leaders, physicians, pharma representatives, advocates, caregivers, and volunteers. Growing beyond our original scope of capacity building, this year we have brought Rising Sun to another level: Access to Treatment is Access to Life – Everyone Has a Role!
