Over the last couple of years, there have been countless cases, where family and friends have been left shocked and scared as they discover that their loved ones have cancer.
Their world changes overnight and a long journey begins. On one side, there is an outpouring of prayers and support, on the other side, they are unable to shake off that sense of dread and uncertainty.
From visiting doctors, hospitals to making umpteen trips to outside the State, it’s a lot to deal with and it’s extremely tough and expensive on the patient and their support system- the caregivers.
Last year, a group of such caregivers, decided to do work together to help alleviate others who were dealing with similar situations.
“After speaking to a few friends who all had personal experiences with cancer or knew somebody who had cancer, there was a consensus that something had to be done,” says Lourdes Soares, Founder of Sabrcare.
Lourdes’s mother has been battling cancer since November 2016 and her family’s journey since then, was completely fragmented, and filled with chaos, confusion and mental exhaustion.
“However, we were fortunate enough to be able to afford private treatment, but this exposed me as a caregiver to the silent war that most patients and caregivers are fighting every day. For people who cannot afford treatment, public health care can be intimidating, especially due to the large numbers that come into these centers. The experience is overwhelming and frightening,” she adds.
This is when she got in touch with people she knew and an idea was born. All of them came from varied backgrounds but had one goal. They soon began volunteering as patient navigators who help patients navigate from diagnosis, to screening, to treatment, recovery and sometimes bereavement.
Thus, Sabrcare Trust was born on Jun 4, 2018. The core team consists of five trustees – Roma Dias, Namrata Desai, Dr. Anupama Mukherjee, Steffie Antao, and Lourdes Soares. They also have Dr. Rheane Da Silva as Director, who has been instrumental in driving their on-ground efforts along with their Operations Lead Schalk D’souza.
The team is equipped with the vital quality of empathy, as each of them has been or continues to be a care giver.
They each have witnessed the journey up close and independently as they saw a cousin being diagnosed with Acute lymphoblastic leukemia, (ALL), a close friend battling Ovarian Cancer and relative surviving Bladder Cancer.
“The diagnosis of cancer usually brings with it a share of uncertainty and stress. It often involves months of investigations, treatment planning and management, which may not always be curative. Since each of us had a personal experience as care givers, it reinforced our resolve to initiate a support system for those in need,” says Dr. Anupama Mukherjee.
It was fitting then, that they chose the word ‘Sabr’ to be part of their trust’s name. It’s a word in Urdu and Arabic, which means patience and endurance, especially when hope seems lost.
“We started our operations focusing on children with cancer, as in the spectrum of cancer patients, children are the most vulnerable segment,” says Dr. Rheane Da Silva.
In a commendable feat, they have assisted close to 30 children, parents and caregivers over the last 1 year.
Sabrcare Trust essentially provides patient navigation services such as handholding the patients, especially the parents through screening, diagnosis, treatment and recovery by giving them information support, emotional support, financial assistance and medico-practical advice.
“Once we formalise the efforts, we hope to serve close to 80-90 more children,” adds Steffie Antao.
They operate under the guidance of the Department of Oncology, Goa Medical College and Hospital after receiving a formal approval from the Public Health department. Once an MoU (Memorandum of Understanding) is signed, they look forward to establishing a Sabrcare Unit, which will provide them a stronger platform to help navigate patients through the process.
“We also offer financial assistance, travel/logistics in case the patient has to be sent out of Goa, emotional support as well as other non-medical interventions,” says Roma Dias.
On a concluding note, they point out that they are incredibly fortunate to their partners, namely: CanKids (India’s largest children’s cancer charity), Macmillan Cancer Support UK (Content partnership for reading material) and PwC India – School for Social Entrepreneurs (Mentorship assistance in helping us formulate our efforts).
Part of country’s top 50 selected for Google- Tech4Good Summit
In Goa, ‘Sabrcare Trust was recently recognised among those start-ups, which were certified under the Goa Start-up Mission as per the State’s IT Start-up Policy.
In India, ‘Sabrcare Trust made it to Google’s list of top 50 non-profits in India and the team recently attended the Google- Tech4Good 2019 Summit workshop hosted by Google India in Bangalore.
This is impressive given how many applicants Google India receives for the same. Encouraged by this recognition, the team stated that they are looking at leveraging the expertise of Google technology volunteers to assist their efforts.
“Most times information and communication gets lost, impacting treatment and thus the outcome. Technology can solve that,” add Schalk D’souza, Operations Lead.
They also point out that with Goa being a tier-2 State, the specialists and advanced diagnostics are based in metros outside Goa.
“ALL (Acute Lymphoblastic Leukemia) requires an advance hospital set-up and a robust infrastructure to compliment the treatment. The treatment-related mortality is higher in sub-optimal centres, due to which, most parents prefer to get their children treated at Tata Memorial Hospital or similar centres of excellence. These centres are usually located in the metros,” adds Lourdes.
