Patient Access Advocacy Workshop - India

The Indian Alliance of Patient Groups (IAPG) and the Global Alliance for Patient Access (GAfPA) are jointly organising a stakeholder workshop on March 12, 2019 in New Delhi. The meeting and workshop will bring together patient advocates, policy makers and academia to debate and discuss the challenges preventing access to healthcare and pathways to advocacy for patient groups in India.
The Advocacy and Access workshop plans to address the following objectives:- To review the experience through case studies of advocacy in action from around the world, and identify two best practice examples which they themselves can then put to use.
- To review the state of policies and regulations in India.
- To identify the challenges that patients and patient advocates are facing, and to identify the opportunities and solutions which can address these challenges.
- To prepare a meeting report to serve as an educational resource for groups to use in their advocacy work.
Background
India has been home to a strong civil society movement since a long time. Advances in medicines, mathematics and science have been well documented in the ancient scripts and research was considered an integral part of the saints and mystics regimen and routine. With advances in modern medicine and a growing population, poverty and economic divide has made access to healthcare an everyday struggle for the common man. The knowledge passed from generations for natural cures has been forgotten and replaced by visits to hospitals. New diseases and disease causing agents have baffled scientists and mobility, migration and human movement have helped pathogens spread faster, mutate and cause more devastation than before. The advances in communication technologies has brought patient communities closer and supported information exchange, but also led to information asymmetry. Patients and patient groups have had to adjust to transformational changes and reinvent themselves to face new challenges in this milieu.
The Indian Alliance of Patient groups (IAPG) was formed in October 2015 to bring together patient advocates under one umbrella and unite as one voice to discuss, negotiate and support various national and regional healthcare policies and programs in India. From a small six member entity, it has grown to 40+ members and is able to participate in various forums. It is a mix of large, established organisations well versed with advocacy and small self-help groups, passionate about the cause they represent and disease specific groups affiliated to international networks. IAPG is hosted by Dakshayani and Amaravati Health and Education, a member of IAPO.