When health researcher and journalist Rupsa Chakraborty began a six-month investigation into India’s rare disease funding policy, she knew there was a lot at stake.

“Patients were going to the centers begging the doctors to release the fund for the treatment of their children who are dying in front of their eyes,” Chakraborty told the more than 60 journalists convened for the National Press Foundation’s Rare Disease Reporting Fellowship.

She herself was also a 2023 NPF Rare Disease fellow who produced multiple features for Fondation Ipsen’s compilation book “Living with a Rare Disease Worldwide, Volume 3.” Chakraborty is currently studying for her master’s degree in global health policy at the London School of Economics, after a distinguished reporting career with the Indian Express and the Hindustan Times. The Johns Hopkins Bloomberg School of Public Health’s Global Health Now forum recently published her funding policy investigation. Here’s what she learned:

Where are the gaps between policy and practice?

In 2021, the Indian government enacted a policy directed at three groups among India’s 70 million people living with rare disease. Group One would need one-time curative treatment therapies. Group Two would need longer-term care, but its cost would be less expensive. People in Group Three would need life-long care, which of course would be more expensive.

Chakraborty’s reporting uncovered flaws in a scheme to create centers of excellence that would provide funding and services for rare disease patients, but which turned many families away. “The government stated that they don’t have enough funds to help the registered patient. And even with the fund that they have given to the centers of excellence, only 30 percent of the funds were being utilized. 70 percent remain unutilized.”

Understand the policy inside and out

Chakraborty said India’s national rare disease policy is about 50 to 60 pages long, but reading it from start to finish uncovered many clues.

“They were supposed to start the lab, which never happened. They were supposed to provide money for the transportation from one district to another. Never happened. So if you read the policy paper of your respective government, you will find many things which are not being implemented. People are still suffering because of those are not being implemented. So you can always follow up on those, at least you’ll have a starting point.”

Find the hard facts

To get at the root of the story, Chakraborty started filing Right to Information requests and began reading hundreds of copies of court proceedings and affidavits. She had to gather as much hard data as possible to circumvent denials from government officials.

“When I have data, authentic data, there is no way that the government can deny it. And I have always done journalism so that I can bring some change in the society, so previously when I have done qualitative research … interviewing the family members or data that were being compiled by the NGOs, the government didn’t take any cognizance, they didn’t react. They said ‘only four people have died, you don’t have the data to show a hundred people have died.’ So that really made me angry. I decided to focus on data, then correlate with the case studies, court proceedings and all.”

Educate your editors, too

Some editors, especially those who are unfamiliar with rare diseases, may urge reporters to cover the most sensational aspects of the disease. Chakraborty recommends leaning into the unique elements of a person’s illness in a way that doesn’t exploit them.

Out of the many case studies she identified, Chakraborty struggled to decide which ones to amplify.

“Ethically I didn’t know whom to prioritize in my story. But yes, I chose patients who were most vulnerable, especially from poor economic backgrounds, and whose … deterioration was progressing faster than other patients. So yes, choosing case study was important for the impact of the story.”

Access the full transcript here.

This fellowship is funded by Fondation Ipsen. NPF is solely responsible for the content.