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.¹ 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 2020,² 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.³ 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.⁴ 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 1.

The 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 no	New follow up total	December	January	February	March	April	May	June	July	August	September	October	November	Annual total
1	New	158	256	48	24	286	152	276	224	210	376	228	273	2512
2	Follow up	1128	836	693	967	745	767	436	513	357	211	401	493	7549
3	Monthly Total	1286	1092	741	991	1031	919	712	737	567	587	629	766	10061

Some advocacy activities included:

• 1.Medicines were couriered to patients living in remote and rural areas.³
• 2.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.⁵ 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.

Contributors

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.

Declaration of interests

None.