Surguja Sickle Cell People’s Health Conference Held in Chhattisgarh, India

More than 400 people came together on 1 October to advocate for the needs of people living with sickle cell disease in Chhattisgarh State in central India.

During the Surguja Sickle Cell People’s Health Conference, 250 patients and their families discussed the challenges of living with sickle cell disease. They also presented their needs to the Chhattisgarh health minister, who attended the conference virtually. Their requests included a streamlined procedure for issuing disability certificates, financial support for transportation to healthcare facilities, and greater availability of the pneumococcal vaccine. 

Those attending the conference celebrated the doctors, nurses, laboratory technicians, and other support staff from public health facilities who supported the care of people living with sickle cell disease. The participants also took comfort in their shared community.

“I was not aware that there are so many patients with sickle cell disease in this area,” said Nilam, a participant living with sickle cell disease. “It was good to meet other patients and understand their stories. I do not feel lonely anymore. This conference gave me hope.”

The conference was co-hosted by Chaupal and Sangwari, two not-for-profit organizations focused on equity and better healthcare for people in the Surguja district of northern Chhattisgarh. The Chhattisgarh PEN-Plus initiative supported the conference.