It’s early afternoon on a Sunday at the Tata Memorial Hospital in Parel. In a large auditorium in the golden jubilee building, a group of about 100 is sharing stories with each other, and seeking advice and help from doctors who are part of the session.
The meeting, arranged by an organisation called Friends of Max (FOM), is for individuals impacted by two specific types of cancer: chronic myeloid leukaemia (CML) or gastrointestinal stromal tumor (GIST). Many of the people at the meeting have been living with one of these types of cancer for several years; the support meetings are a much-needed way to meet others living with the same issues.
Just before the meeting starts, the patients and their families take part in a unique initiative. Each one is encouraged to buy a cup of tea for a token amount, about ₹100, that will go toward helping other patients like them. The patients attending are from all kinds of economic backgrounds, but even those who are not well-off happily contribute. “There are more than 17,000 people across the country who suffer from these two types of cancers,” says Suresh Pawar, who lives with CML, “and no one understands what they are going through better than us.”
Small gatherings like this, all based around the simple concept of a cup of tea, are powering the work being done by FOM, a Indian charitable trust affiliated with the Max Foundation, a global health organisation that works towards getting all people with cancer access to the best treatment and support.
The cost of living
CML is a rare kind of blood cancer which has no specific or known risk or causative factors. Until targeted therapy came on the scene, this was a fatal condition with no other cure except a bone marrow transplant. GIST is also a very rare group of tumours that start in the digestive system. Till recently surgery was the only option, and it helped if the growth was detected early. Today, with targeted therapy patients can lead productive lives despite the malignancy.
Viji Venkatesh, Max’s region head for South Asia, says that patients with either disease must take a drug called Glivec all their lives. While the drug is distributed free worldwide by Novartis through the Max Foundation, there is a huge cost impact with things like diet, associated medicines and travel for tests (which patients have to undergo every four months). For patients from remote areas, there are also travel costs to come to a facility that does the tests.
Starting a conversation
“I found that many patients simply didn’t have the money to deal with the attending costs and follow up with treatment,” Ms. Venkatesh says. “As a result, I found many of them falling off the radar.” She also found that several patients had stopped treatment because they had simply grown tired of lifestyle changes, and living with the cancer for years, which is not uncommon in patients with chronic illnesses.
“I started a support group called Friends of Max, because I simply wanted to get them together to talk,” she says. “I decided that we simply had to have these support groups every month in various cities otherwise these patients would just be lost.” Friends of Max, founded in 2003 and registered as a charitable trust in 2006, works to help these patients negotiate life and also to deal with the attendant costs, like travel, other medical fees, food, and education subsidies for children living with the cancers. These meetings, and providing support, are hugely expensive. That’s where the chai comes in.
A simple cuppa
A few years ago, while Ms. Venkatesh was discussing the matter of funding with her trustees, her eye fell on a mug on her table. A few years earlier, she had gone on a Queen’s Cancer Fund Fellowship to Australia; as part of fundraising activities, she was taken to an event in a private home, part of what was billed as Australia’s biggest tea and coffee morning. “This lady had hosted this nice event with tea and coffee and nice cakes and these mugs that people could buy. I remember buying a mug for 20 dollars or something and that mug was on my table. I looked at it and I immediately thought: let’s do Chai For Cancer!” Chai, she says, is something that most Indians have anywhere and at any time, and her idea was to bring cancer on to that level, to make fundraising for patients as simple, as ordinary, as sharing a cup of tea.
So, Ms. Venkatesh invited friends and family to her home in Thane in 2014 to share a cup of tea and contribute toward helping patients. Since then, on every second Sunday of May, Ms. Venkatesh opens up her home again. But the effort has grown far beyond her home, and now includes a medley of smaller addas among patients, volunteers and other well-wishers across the country. That first year itself 23 other patients from the FOM community had similar addas in their own homes, inviting friends and family and asking them to contribute whatever they could, no matter how small.
Spreading the chai
Chai for Cancer addas are now a regular feature at this time of year, in and around the second Sunday of May. Ms. Venkatesh says that this year, there will be addas not just in the homes of patients around the country but also in institutions like the Rajiv Gandhi Cancer Institute and Research Centre in Delhi and public venues like Lodhi Gardens in Delhi and Victoria Memorial in Kolkata.
Ms. Venkatesh is also starting an online campaign to encourage people to take a ‘chaifie’, a picture of themselves drinking a cup of tea, which they can post on social media on May 14, after which they can donate online to the chai for cancer page to make a donation.
Chai for Cancer has also now gone international, with the Max Foundation spearheading a number of initiatives around the world along similar lines. (Since Indian government regulations restrict international fundraising by Indian organisations, those initiatives will not directly benefit Friends of Max.)
This year, in India, for anybody wishing to host an adda as part of the chai for cancer initiative, Society Tea will provide tea bags as well as cups to serve. In addition to the chai, there are also Chair for Cancer mugs and T(ea)-shirts designed by the clothing wing of Salman Khan’s Being Human Foundation, which people can buy to make a contribution.
Friends of Max
Founder: Viji Venkatesh
Founded: 2003
Source of funds: Sales of tea and memorabilia, public donations
Contacts: chaiforcancer.org
Donate: friendsofmax.info/home/donate-here
