Lung cancer is rapidly becoming an epidemic in India, claiming more lives than colorectal, prostate, and breast cancers combined. Often associated with smoking, this disease carries a significant stigma. However, the reality in India is shifting: a growing number of new lung cancer cases occur in non-smokers, including an alarming rise among women and young people.

Today, lung cancer is recognized not as a single disease, but as a complex group of conditions with numerous types, subtypes, and genetic mutations. Each patient’s journey is unique, requiring personalized care and treatment strategies tailored to their specific needs.

In 2012, at the young age of 29 years and mother of 3 years old, Kusum Malik Tomar, a never-smoker, was diagnosed with Non-Small Cell Lung Cancer (NSCLC) with an Anaplastic Lymphoma Kinase (ALK) gene mutation. She and her husband Vivek Tomar was searching for information, experience, support in Lung Cancer & ALK, but there was no dedicated support group for lung cancer patients in India at that time. In 2015, ALK Positive Inc a global support group was founded in US and Kusum found great support through that. This experience highlighted the urgent need for a local community to address critical challenges specific to India, including:

• Ensuring timely and affordable access to the latest treatments for ALK-positive NSCLC patients in India
• Improving access to clinical trials and research medications
• Enhancing availability and affordability of mutation and sub-mutation testing facilities
• Collaborating with doctors and hospitals to provide better patient support and care
• Raising awareness about ALK-positive lung cancer
• Identifying and connecting every ALK-positive lung cancer patient in India to the support group, so that no one has to face the journey alone

In response:
Kusum and Vivek co-founded “ALK Positive India” in 2017.
This became the India’s first patient support group in India dedicated to lung cancer and the first to focus on a specific oncogene.
The gorup was established with the invaluable support of Amit Mohile, a caregiver, and Chacko Varghese, an ALK-positive patient.

Oncogene-focused or mutation-specific patient support groups were a new concept in India, unfamiliar not just to patients, but also to doctors, industry leaders, and policymakers. However, the benefits are substantial: patients with the same type of mutation can share experiences, treatment options, and manage side effects together, creating a powerful network of knowledge and support.

The India ALK Positive Support Group is actively working on these critical needs by engaging with patients, doctors, industry professionals, policymakers, hospitals, and the media. It’s a long journey, but we are committed to changing the future of ALK-positive lung cancer for the better.

Our efforts have been further strengthened through training under the NGO Excellence Program at SPJIMR, one of India’s leading business schools.

How to Join the ALK Positive India Patient & Caregiver Support Group

If you know someone in India diagnosed with ALK-positive Non-Small Cell Lung Cancer (NSCLC), please refer them to our pan-India online support group for ALK-positive lung cancer patients and caregivers.

To add someone to the ALK Positive India WhatsApp group, please email us at alkpositiveindia2017@gmail.com with the following details:
> Patient/ Caregiver name,
> WhatsApp number, and
> Proof of connection with ALK Lung Cancer.

Updates:

> August 2018: Dr. Vivek Tomar (PhD, MPharm) became India’s first lung cancer patient advocate to receive the IASLC International Patient Advocacy Award at the World Conference on Lung Cancer in Canada, recognising his exceptional contributions to lung cancer advocacy.

> February 2019: ALK Positive India co-founder Kusum Malik Tomar passed away after a remarkable 7-year journey with Stage IV ALK-positive lung cancer. She was the longest survivor of her time and a true pioneer who participated in seven clinical trials and research therapies (inclusing first patient from India for Ceritinib clinical trial, Alectinib research access and ALK TKIs + Avastin studies), helping bring cutting-edge treatments to India – benefiting thousands of ALK-positive lung cancer patients across India and beyond.

> September 2025: Two recognitions were awarded to patient advocates associated with ALK Positive India at the World Conference on Lung Cancer 2025, Spain: 1) Dr Urvashi Prasad (PhD) received the Patient Advocacy Travel Award for her exceptioanl work in Lung Cancer Awarness and Advocacy, 2) Dr Vivek Tomar abecame India’s first patient research advocate to receive the STARS Award for his Lung Cancer Research advocay work.

> November 2025: ALK Positive India is delighted to welcome Dr Urvashi Prasad as its new Executive Director. A fierce patient advocate, Stage IV ALK-positive lung cancer patient, and public health expert, she brings unmatched passion and leadership to champion patient voices and improve lung cancer outcomes.