Patient advocacy and support groups in India: focus on lung cancer

Globally, patient advocacy and support groups have helped advance science and patient care, however, this is an unmet need in India. In 2017, Rise To Survive, a support group for patients with ALK-positive lung cancer, was created in India.1https://risetosurvivecancer.com/2018/09/05/alk-positive-india-indias-1st-patient-support-group-dedicated-to-lung-cancer-also-1st-mutation-level-support-group-in-any-type-of-cancer-in-india/LastDate accessed: January 9, 2024Google Scholar In 2018, a few advocates, patients with lung cancer, caregivers, and survivors came together to form, "Lung Connect India Foundation"–a support group, aimed to empower patients with lung cancer and their families, through information, resources, and support. During India's countrywide COVID-19 lockdown in 2020,2Noronha V. Shah D. Mokal S. et al.Deviation from standard cancer treatment during the first wave of the COVID-19 pandemic in India: a cross-sectional study.Cancer Res Stat Treat. 2022; 5: 212-219Crossref Scopus (9) Google Scholar many patients from across the country who were on active treatment at Tata Memorial Hospital (Mumbai, India), could not reach the institution and were unable to obtain their medicines. Lung Connect India Foundation, which was, hitherto, an offline support group, transformed into a digital network to support patients from across India and neighbouring countries.3https://cancerworld.net/indias-lung-connect-online-cancer-support-low-income-settings/Date accessed: January 9, 2024Google Scholar Lung Connect India Foundation started online support group meetings. To date, 100 support group meetings have been conducted online where almost 18,000 patients, including some caregivers from Bangladesh, Nepal, and USA have benefitted (Table 1). Nearly 44 lakh people have accessed the social media handles of Lung Connect India Foundation.4https://www.lungconnectindia.org/Date accessed: January 9, 2024Google Scholar In a survey, 93% of patients/caregivers felt that they had benefitted from Lung Connect. The top reasons provided by patients and caregivers for joining Lung Connect were medical queries, nutrition guidance, and emotional support (Supplementary Figure S1).Table 1The number of patients and caregivers who have been guided/supported by Lung Connect coordinators over a one-year period.Yearly report of lung connect coordinators ∗December 2021–November 2022∗Sr noNew follow up totalDecemberJanuaryFebruaryMarchAprilMayJuneJulyAugustSeptemberOctoberNovemberAnnual total1New158256482428615227622421037622827325122Follow up112883669396774576743651335721140149375493Monthly Total12861092741991103191971273756758762976610061 Open table in a new tab Some advocacy activities included:1.Medicines were couriered to patients living in remote and rural areas.3https://cancerworld.net/indias-lung-connect-online-cancer-support-low-income-settings/Date accessed: January 9, 2024Google Scholar2.Patients nearing end-of-life who lived in villages/rural India, were connected to local palliative care centres. This helped many patients to die pain-free and with dignity.3.Patient advocates wrote to the Niti Aayog (largest policy-making body in India) about the importance of molecular testing and requested for the cost to be covered by the Ayushman Bharat scheme and insurance policies.4.Through advocacy, cancer has been listed as a notifiable disease in the state of Jharkhand, India. In the same state, economically vulnerable patients can now receive ₹25 lakhs for their lung cancer treatment.5https://www.telegraphindia.com/jharkhand/cashless-treatment-facility-of-rs-25-lakh-at-tata-medical-centre-cancer-hospital-and-research-centre-in-calcutta/cid/1958650Date accessed: January 9, 2024Google Scholar Efforts are on to convince the government of India to include cancer in the list of notifiable diseases. Lung Connect India Foundation has become the largest community of lung cancer advocates, patients, and caregivers—of people on treatment and of those who have died. All support is provided free of cost. Vandana Mahajan: Conceptualization, Review and Editing. Dr Vanita Noronha: Conceptualization, Writing Original draft, Review and Editing and supervision. Ravi Prakash: Review and Editing. Sanjeev Sharma: Review and Editing. Dr Kumar Prabhash: Conceptualization, Visualization, Review and Editing, Supervision. None. Download .docx (.02 MB) Help with docx files Supplementary Figure S1 Uniqueness of lung cancer in Southeast AsiaLung cancer varies between Caucasians and Asians. There have been differences recorded in the epidemiology, genomics, standard therapies and outcomes, with variations according to the geography and ethnicity which affect the decision for optimal treatment of the patients. To better understand the profile of lung cancer in Southeast Asia, with a focus on India, we have comprehensively reviewed the available data, and discuss the challenges and the way forward. A substantial proportion of patients with lung cancer in Southeast Asia are neversmokers, and adenocarcinoma is the common histopathologic subtype, found in approximately a third of the patients. Full-Text PDF Open Access