Patient Access Advocacy Workshop- New Delhi, 2019

Indian Alliance of Patient Groups (IAPG) in collaboration with Global Alliance for Patient Access (GAFPA), International Alliance of Patients' Organizations (IAPO) and International Institute of Health Management Research (IIHMR) organized a Patient Access Advocacy Workshop at Lalit Hotel, New Delhi.

The workshop focused on how patients groups can work together to make healthcare more accessible to people. How patient advocates can create a shared responsibility with providers so there can be better communication. And the focus of the meeting was how patient advocacy groups can reach to policymakers, create accessibility and their role in better management of the disease. It was a great effort towards better healthcare and how to make it reachable to everyone.

"Every day across the globe, advanced treatments offer new hope for patients. New advances in medicine may treat or cure diseases that were disabling, even terminal.
But they also present new challenges for policymakers and governments, who must ask: How will these treatments be approved?  Regulated?  Paid for?  To answer these questions, policymakers need to hear from those who will be directly affected — patients and physicians.
That’s why GAfPA works internationally to educate, empower and mobilize physicians and patient advocates. Their unique insight can guide policymakers to make informed decisions about value, safety, cost and, ultimately, patient access."

The main agenda of the workshop was to discuss access in the context of patients. To understand if the needs and aspirations of patients really met. What can be done to cover the gaps? And most importantly discuss the role of Science and innovation in increasing access.

Dr. Chaitanya Koduri spoke about an important issue regarding the quality of medicines. Mrs. Manjiri, Vice President of Indian Pharmaceutical Association (IPA) spoke about the necessity of a Pharmacist in medical shops to stop malpractices. She spoke about the danger of overuse of antibiotics.

Brian Kennedy, CEO of GAfPA gave a small training on Patient Advocacy where he gave pertinent examples from the USA that could fit in the Indian context. It was an engaging speech.

Mr. Brian Kennedy

The concluding session by Denny John was all about shared decision making between patient and medical practitioner to improve patient engagement. 

This event was attended by patients advocates from all over India. Balaka Basu, founder of ICI and Arun Dahiya, Research Head and Social Media Specialist of ICI attended the meeting. Another patient from Delhi Dr. Jagruti also attended. The other patient advocates were Kirtida Oza from Sjogren India, Mr Anil Chaubey from Prader Wili syndrome India, Mrs. Mitra Sen from Parkinsons Patient Welfare Society and Mrs.Sobha Bhattacharya from GNE-Myopathy also attended. It was an amazing experience to interact with so many patient advocates.

Rare Disease Patient Advocates

Balaka Basu asking a question. Arun Dahiya and Dr Jagruti also present

Balaka Basu and Arun Dahiya