Executive Summary

Background

Long COVID, a debilitating health condition that can develop after a COVID-19 infection, has affected at least 400 million people worldwide as of 2024. People with Long COVID may experience symptoms such as severe fatigue, cognitive and sleep dysfunction, chronic pain and migraines, which have drastic impacts on quality of life and social participation. In India, where COVID-19 cases were vastly underreported, Long COVID is a growing but overlooked public health crisis. The COVID-19 pandemic has exposed critical barriers in India’s health system, including underfunded and overburdened public health facilities, unaffordable private care, and high out-of-pocket expenses that push families into poverty. This report describes the healthcare experiences of people with Long COVID in India and the challenges faced by healthcare professionals who treat Long COVID patients.

Methods

This report was developed through a participatory, patient-centered approach led by the Patient-Led Research Collaborative (PLRC) in partnership with Long COVID India. Recognizing the unique relevance of lived experience, the study was co-designed with patient experts, ensuring the research prioritized the perspectives of those most affected. To describe and contextualize Long COVID healthcare in India, this report combines desk reviews, expert consultations, and in-depth interviews with patients and healthcare professionals treating people with Long COVID.

The team conducted interviews with nine healthcare professionals across India, exploring their clinical experiences with Long COVID and systemic obstacles in diagnosis and treatment. Parallel interviews with Long COVID patients provided firsthand accounts of their healthcare journeys, financial burdens, and unmet needs. Findings were synthesized through iterative thematic analysis. By centering patient voices alongside medical expertise, this report offers a grounded, policy-relevant assessment of experiences with Long COVID healthcare in India, aiming to support equitable healthcare solutions.

Key Findings

Accessing Long COVID Care in India

1. Patients Struggle to Get Proper Diagnosis & Treatment

Healthcare providers often fail to identify and diagnose Long COVID. The absence of standard diagnostic tests leads to frequent misdiagnosis and treatment delays, as reported by specialists treating people with Long COVID. Geographic disparities exacerbate these challenges, with specialist shortages in rural areas forcing patients to undertake burdensome journeys for care. India’s delayed national Long COVID guidelines (2022) left physicians relying on care protocols from other countries.

2. Eroded trust in patient-provider relationships in the context of Long COVID care

Healthcare professionals often fail to recognize Long COVID, refuse to acknowledge the condition or use the term “Long COVID”. Patients are often dismissed with symptoms attributed to stress or anxiety–particularly women, low income and rural patients. Patients can wait years for acknowledgement of their Long COVID, and healthcare specialists admit many people, including physicians, invalidate and refuse to acknowledge Long COVID.

3. Pathways of care

Long COVID clinics opened briefly, and closed most likely due to lack of sustainable funding. The early patient registries stalled, losing critical data on Long COVID’s impact in India and capacity to coordinate research among multiple locations. Some patients were also sceptical of the effectiveness of these clinics, mentioning they encountered the same dismissive attitudes found in general healthcare. While Long COVID clinics were short-lived, patients continue to require long-term healthcare. Without functioning clinics, patients bounce between specialists or give up on care altogether. This systemic under preparedness left primary care doctors overburdened, with no standardized referral system for Long COVID patients.

4. Patient support groups and traditional medicine practitioners fill the gaps

Online patient communities provide critical emotional and practical help. Grassroots networks share symptom management tips and recommend trustworthy doctors. Without access to formal healthcare, these patient groups become lifelines. To manage symptoms, patients turn to low cost alternatives that have limited to no evidence-based support, although traditional medicine practices are culturally rooted and increasingly studied for Long COVID symptom management (e.g., fatigue, inflammation). When routes of care within allopathic medicine fail patients turn to unregulated treatments.

Socioeconomic and Geographic Barriers to Long COVID Care in India

1. Financial hardship limits treatment access

Long COVID patients struggle financially due to loss of income and crippling out-of-pocket costs for tests, specialist visits, and medications—with many forced to abandon care altogether. Tests and specialist visits drain patient’s financial savings, with little insurance coverage. Lost income due to chronic illness and disability worsens financial strain, especially for rural and daily wage workers.

Those with family connections with physicians or higher incomes bypass systemic barriers, securing faster diagnoses and specialist care. Rural and low-income patients disproportionately rely on underqualified providers or untested alternatives.

3. Urban vs. rural access disparities

During Delta COVID-19 waves, rural health systems collapsed. Initial rural skepticism about COVID-19 left lasting mistrust in healthcare systems and left gaps in Long COVID awareness. Many rural patients attribute symptoms to “weakness” or poverty rather than Long COVID, delaying care. Community health hubs became critical lifelines as Long COVID emerged.

4. Gender Bias compounds healthcare access barriers

Women with Long COVID face dismissal of fatigue and menstrual-health related symptoms, with cultural norms discouraging seeking help for health concerns. Rural women’s mobility is further restricted by gendered control over finances and transportation. Urban working women report hiding symptoms due to workplace stigma.

Impact of Long COVID on home, in the workplace, and in the community

1. Stigma towards acute COVID-19 and chronic illness

During 2020–2021, fear and misinformation led to severe social ostracization against infected individuals with acute COVID-19 disease. This deep-seated stigma extended to people with Long COVID. Stigma and societal perceptions of chronic illness deter disclosure of having Long COVID due to fears of jeopardizing marriage prospects or social standing. Mental health struggles are pervasive, with patients reporting depression, social neglect, and resentment over their diminished capacity to meet domestic or workplace expectations.

Long COVID has significantly disrupted India’s workforce across formal and informal sectors, with debilitating symptoms like fatigue, cognitive impairment, and chronic pain forcing workers to reduce hours, change jobs, or stop working entirely. The socioeconomic consequences are stark, particularly for laborers and daily wage earners. Even white-collar professionals with Long COVID face workplace discrimination, with employers often dismissing the condition’s severity. Clinicians emphasize that Long COVID disproportionately affects India’s productive-age population, pushing many into financial precarity or reliance on family support.

Recommendations

We’ve assembled three areas of high-leverage recommendations based on our interview synthesis and our own expertise at the Patient-Led Research Collaborative.

1. Clinical Care Priority Recommendations

India’s vast geographic, cultural, and socioeconomic diversity demands flexible, context-specific models for Long COVID care that align with local populations’ needs.

Priority Area	Key Recommendations
Integrated Care Models	• Develop protocols bridging allopathic and Ayush medicine in Long COVID care • Create quality standards for Ayush treatments • Establish Long COVID Centres of Excellence
Provider Training	• Mandate Long COVID and IACC education in medical curricula • Incorporate Long COVID and IACC into continuing education for recertification • Train providers in empathetic communication
Sustainable Care Models	• Create hub-and-spoke care networks • Integrate mobile care for rural access, combining cultural and infrastructure adaptation, and digital literacy • Establish dedicated funding mechanisms for care centres

2. Public Health Policy Recommendations

To effectively address Long COVID, India must formally recognize it within its healthcare system through government-funded awareness campaigns, policies ensuring financial protection for patients, and investments in rural mobile health initiatives.

Priority Area	Key Recommendations
National Recognition	• Develop comprehensive national guidelines • Create Long COVID surveillance systems • Standardize diagnostic criteria
Financial Protection	• Expand insurance coverage for Long COVID • Create disability support systems • Implement sliding fee scales
Long COVID and IACC Awareness Campaigns	• Launch anti-stigma education programs • Target workplace discrimination • Focus on prevention messaging
Equity Initiatives	• Expand rural and mobile health services • Develop gender-responsive care protocols

3. Research Priorities

To address India’s unique Long COVID challenges—from diverse symptom profiles to resource constraints—it is critical to safeguard sustained investment in patient-centered research, develop India-specific studies and accessible diagnostics, while fomenting creating and participation in international research networks, as well as collaboration between public funding, philanthropy, and healthcare providers.

Priority Area	Key Recommendations
Patient-Centered Research	• Fund community-led research initiatives • Integrate patient advisory groups • Support grassroots health organizations
India-Specific Studies	• Conduct longitudinal population studies • Research traditional medicine effectiveness • Study reinfection impacts
Diagnostic Research	• Develop biomarker discovery programs • Create cost-effective diagnostic tools • Establish patient registries
LMIC Networks	• Build resource-appropriate research capacity • Share successful models between countries • Support local researcher training