Lung Connect India Foundation: Empowering Voices, Saving Lives

Mumbai, (Maharashtra), [India], 19th December, 2024: November is observed globally as Lung Cancer Awareness Month, with organizations worldwide dedicated to raising awareness about lung cancer. To mark this occasion, the Lung Connect India Foundation (LCIF) introduced a comprehensive campaign throughout the month. This included daily educational videos for patients and caregivers on topics such as treatment options, diagnosis, palliative care, lifestyle, emotional well-being, government schemes, how to get funds, physiotherapy, nutrition, and clinical trials. The initiative provided a platform for patients and caregivers to have their voices heard on a global scale.

In addition to bringing together key global institutions working on lung cancer, Lung Connect launched its innovative “Buddy Program.” This program connects newly diagnosed lung cancer patients with experienced mentors to provide emotional support and address common concerns. A webinar also explored strategies to amplify the patient’s voice and improve patient outcomes.

As part of the campaign, a one-day conference in Varanasi brought together lung cancer patients, doctors, and other stakeholders to share experiences, discuss challenges, and explore ways to enhance patient care and support.

Throughout the month, the Lung Connect India Foundation actively advocated for lung cancer patients and caregivers at both domestic and international conferences. Notable events included the World Cancer Conference in Geneva and Hopeful Voices in Singapore. Their social media efforts have been highly successful, reaching 1.2 million people over the past year, including a remarkable 1.5 lakh in November alone. In just a few years, Lung Connect India has expanded its reach to an impressive 55 lakh people.

The story of LCIF began in 2018 when a group of patient advocates, lung cancer patients, caregivers, and survivors came together to form the “Lung Connect India Foundation” – a support group aimed at empowering patients and their families through information, resources, and support. During the COVID-19 lockdown in 2020, many patients across the country on active treatment struggled to access life-saving drugs. This urgency inspired LCIF Director and CEO, Mr. Sanjeev Sharma, to expand the organization’s mission. Having worked with cancer patients for over 20 years, he stated, “We had no idea that we could save the lives of so many people in this way. Seeing this happen has motivated us to continue this work of patient support, and we have moved forward with it in a more planned manner.”

Based in Mumbai, the foundation has quickly become a leading support network, advocating for increased lung cancer awareness and equitable access to treatment options. As a key member of the Union for International Cancer Control (UICC), LCIF is recognized both nationally and internationally. This year, Lt. Ravi Prakash, a former director, was honored by the International Association for the Study of Lung Cancer (IASLC) for his outstanding patient advocacy work, reflecting the organization’s significant impact. Additionally, Mr. Sharma has been invited to speak at prestigious international conferences, including sessions at King’s College London, Malaysia’s cancer roadmap launch in Geneva, and the Hopeful Voices event in Singapore. LCIF representatives also contributed to the Lung Health & Oncology National Conference 2024 and the Adolescents & Young Adults Cancer Congress in Australia.

On the advocacy front, Lung Connect launched a comprehensive campaign, collecting 800 signatures from patients and caregivers to amplify their voices and influence policymaking. Their efforts contributed to the Jharkhand government including cancer in the list of notifiable diseases. Building on this success, LCIF has advocated for the inclusion of targeted therapy, molecular diagnostics, and essential life-saving drugs in government and non-government insurance schemes. A delegation from LCIF even presented a memorandum to the Deputy Speaker of the Rajya Sabha, Shri Harivansh Narayan Singh, in Delhi. The foundation has also gained the support of other notable politicians, including Aam Aadmi Party MP Shri Sanjay Singh and BJP MP Shri Sanjay Seth’s wife, who strongly championed the issue in the Rajya Sabha.

LCIF’s impact has been recognized globally, including a feature in The Lancet, which described the foundation as the “largest community of lung cancer advocates, patients, and caregivers.” The foundation also produced a white paper on ASPIRE (Asia Pacific Policy Review and Engagement), further establishing its authority in lung cancer advocacy.

At the heart of Lung Connect India Foundation’s work are its innovative support group meetings, held online to ensure accessibility for patients and caregivers nationwide. These holistic care sessions, featuring expert speakers and guidance from physicians, have benefitted over 42,000 participants through 125+ uninterrupted support sessions. Additionally, the foundation has provided in-person support to over 40,000 individuals, assisting with hospital navigation, securing accommodations, and offering emotional support.

Despite these achievements, lung cancer awareness in India remains a critical issue, as most cases are diagnosed at advanced stages (Stages 3 and 4). LCIF aims to unite all patients and caregivers under one umbrella, promoting early screening as a preventive tool and advocating for the reduction of cancer treatment costs in India.

The foundation envisions a future where lung cancer treatment is accessible to all, regardless of financial constraints. By raising awareness, championing patient rights, and empowering advocates, LCIF is pioneering a transformative approach to lung cancer support in India and Southeast Asia.