Breaking Barriers: A rural sarcoma survivor’s mission to overcome disparities in India 

by Sandeep Kumar

In a small village nestled within the remote Sant Kabir Nagar district of Uttar Pradesh in India, my life was drastically altered at the age of 13 when I was diagnosed with a Primitive Neuroectodermal Tumor (PNET), which is a type of rare bone and soft tissue cancer belonging to the Ewing’s family of Tumors. The diagnosis itself was delayed — not due to fate, but due to an ill-equipped health system. We had no access to specialist doctors, no understanding of the disease, and no roadmap for treatment. My family, with its modest farming background, was forced to make a gut-wrenching decision: borrow money and travel over 1,500 kilometers to Mumbai for treatment, or risk losing a child to a curable disease.

By the time I was on the road to recovery, our household was buried in debt. And yet, I was among the lucky few who survived. That experience etched into my soul a mission — a deep resolve to eliminate this struggle for others. In 2020, I founded DigiSwasthya Foundation, a not-for-profit organization, with one bold vision: to make quality healthcare accessible and affordable for rural India, starting with the most marginalized communities.

The rural cancer care gap

Cancer patients in rural India face almost unsurmountable hurdles.  From unawareness of early symptoms and late diagnoses to prohibitive travel costs and the absence of specialized medical professionals, the barriers to timely and equitable cancer care are staggering. In these areas, cancers like sarcoma remain often undetected until it is too late.

We conducted needs assessments in rural villages and found the following:

- Over 90% of people had to leave their villages for serious consultations.

- 67% felt healthcare was unaffordable due to high out-of-pocket expenses.

- Most were unaware of government schemes and preventive care offers.

- Yet, 70% were open to telemedicine — a potential game-changer.

We asked ourselves: What if someone in a village could access an oncologist in Mumbai or Delhi—without having to leave their home?

From lived experience to scalable solution

Our idea was to deliver a new form of health care blending physical presence and digital connectivity. We use telemedicine to overcome four key barriers: affordability, accessibility, quality, and prevention.

We operate through three main modalities:

1. DigiSwasthya Telemedicine Centres: Fully equipped rural hubs where trained staff connect individuals to over 200 skilled doctors, both general and specialized, offering regular teleconsultations, follow-ups, and referral services. Doctors provide their services at lower rates in comparison to their standard rates, and some volunteer them entirely.
2. Partnerships with Primary/Community Health Centres: We facilitate designated teleconsultation days with specialists such as oncologists, gynaecologists and neurologists, while coordinating referrals and linking patients to subsidized healthcare schemes.
3. Cancer Care Services: Recognizing the urgent need for early detection, we offer cancer screening services in rural areas with a Mobile Medical Unit. These are conducted through health camps, teleconsultations with oncologists and community outreach efforts.   Patients are supported through referral pathways, counselling and navigation toward affordable diagnosis and treatment options.

Cancer care where needed most

Today, we operate in 9 districts across four states (Bihar, Maharashtra, Odisha and Uttar Pradesh)   -  working there in places where traditional healthcare systems struggle to reach.

Since July 2020, DigiSwasthya has delivered 490+ dedicated cancer consultations and have integrated screening protocols into our rural outreach. Our patient navigators ensure that suspected cases are followed up with, assisted in accessing diagnostic tests, and connected to government schemes or partner hospitals for affordable treatment. This model ensures that cancer care is no longer a privilege of urban centres, but a right extended to every village.

 In one such case, a 20-year-old girl from rural Muzaffarpur was referred to us with persistent leg pain and swelling. Through our telemedicine network, she was quickly connected to an oncologist in Mumbai, diagnosed early, and referred for timely treatment—a case that could have easily slipped through the cracks.

Proven Impact on the Ground

In five years of operations, DigiSwasthya has made significant strides:

• Teleconsultations conducted: 79,500+
• Cancer patients consulted: 490+
• Villages covered through outreach programs: 1600+
• Active Doctors: 200+
• Frontline health workers trained: 1500+
• Webinars held: 200+
• Health Camps at Community/Primary Health Cenres: 130+
• Awareness/outreach campaign, people reached: 5 million+

Behind each of these numbers are real lives — children, mothers, farmers, elders — whose access to care was once a distant hope, now made a reality.

Tech for Good: Our Telemedicine Platform

Our custom-built telemedicine software works even in low-network zones. It digitizes patient records, facilitate consultations and automates care pathways such as digital prescription by doctors. It supports patients from diagnosis to recovery while ensuring accountability and continuity.

But true impact comes not just from tech, but from trust. Our field team - often local women trained in basic health facilitation - plays a crucial role. They build relationships, dispel myths, and walk with families through the uncertainty of illness.

In places where gender, caste, disability and poverty intersect to create deadly barriers, our model offers a new possibility. We’ve empowered women to become health ambassadors, patients to become advocates, and communities to begin conversations around cancer.

 Looking Ahead

As we mark Sarcoma Awareness Month, we urge the world to remember that where you are born should not determine if you live or die from cancer.  What we need is not just innovation, but inclusion. At DigiSwasthya, we believe every rural life matters – and we are proving it, one consultation, one follow-up, one survivor at a time.

 

Credits:  Photos provided by DigiSwasthya to SPAGN for publication