Rupsa Chakraborty Transcript — Nov. 19, 2025
Rachel Jones/NPF (00:01):
The first session of day three begins with an admonishment that journalists around the world here often throughout their careers, follow the money in too many countries. Funding for rare disease research and treatment is minimal or non-existent. And even when policies or funding does exist, connecting it to the people who need it the most is a persistent obstacle. Today we’ll hear from a health researcher and investigative journalist who has delved deeply into the rare disease policy realm in India. Rupsa Chakraborty is currently studying for her master’s degree in global health policy, excuse me, at the London School of Economics. She has been a reporter and an editor at the Hindustan Times and the Indian Express, and she was also a 2023 NPF Rare Disease Reporting Fellow. You can read Rupsa’s full bio on our website at nationalpress.org. Rupsa, thank you so much for joining us today.
Rupsa Chakraborty/2023 NPF Rare Disease Fellow (01:18):
Thank you for the opportunity for letting me to talk to the fellows from across the world and on a subject which is very close to my heart. And before I start with my presentation, just a hands up that I am very technologically handicapped. So if I really struggle with the technology, don’t mind and also while talking about rare disease, I get really excited and you might see me getting fired up and very animated, so please don’t judge. So can I share my presentation now? Is it okay?
Rachel Jones/NPF (01:52):
Yes.
Rupsa Chakraborty/2023 NPF Rare Disease Fellow (01:53):
Okay. Okay, so one second. Yeah, so as Rachel said that we are going to talk about the money. So why we are talking about the money, because rare disease I believe is one of the most neglected health aspect. We don’t get funds from the philanthropies. We don’t have enough funding for research, conducting research, lifesaving research. So I’m going to talk about my reporting experience and just to state here that I’m not an expert, I’m also a journalist. I’m learning on a daily basis. So I will just share my experience and we have a lot of thing to cover. And if you have any query, you can put it in the chat box or you can raise your hand. We will address it later to start with. So we know what is red. I have seen the profiles, all the fellows here, we are all very well experienced.
(03:02):
So this is just to give a brief of what is rare disease and these are all estimated figure of people who are impacted or living with rare disease. But the real figures are much more which are not being recorded, especially in global south. And when we talk about rare disease, rare disease has its own broad spectrum of rare disease which are versatile. In India, we have estimated 70 million people who are living with rare disease. So these are some of the policies in France. They have the best infrastructure for rare disease patient where they get free treatment, free medicine. Then also in United Kingdom, you have already spoken to Victoria Gray. She was the first patient who got treatment under crispr and in UK many people suffering from sickle cell disease are getting this expensive treatment free of cost, which is a distant dream for countries like India, Bangladesh, Afghanistan, especially global south. So you can see Australia also has their own subsidized orphan drugs for the treatment of rare disease. Taiwan, Germany, France, they are doing really well in taking care and funding for the research for the rare disease treatment. So this is the holistic picture of the countries who are doing good and creating model for other countries to follow. Now I’m from India. I have, I worked in India for over a decade. So I’m going to talk about India. And the policies also can also be reflected in other global south like Bangladesh, Afghanistan, Pakistan.
(04:45):
So in India in 2021, the government enacted this policy called rare disease policy and it was very promising. It gave a hope to 70 million people who are living with rare disease. So under the scheme, the government has promised to give 50 LAC rupees, which is 60,000 pound to the patient who are registered with the central government. So the patient will, were divided in three categories. Group one who need one-time curative treatment therapies group two long-term, but they need the treatment cost is much lesser. And group three lifelong high cost disorders for which you need millions and millions of money every year. Now the problem started with a group three people whose treatment cost is really high and they cannot be cured a leave like a normal personal normal Indian without having the daily or the annual treatment money flow. So anyways, the government had started this three center of excellence, as we call it, as COEs in three 13 different states in India where if you are a patient with rare disease, you go and register with any of the centers on policy on paper, they were supposed to get this funding for their treatment.
(06:18):
Okay, so you register with the center of excellence, then the rare disease hospital committee, they send your report or your application through the central government for the fund release and you get the treatment. So this was the whole gist of the policy that was introduced and it was very acknowledged and people were really hopeful about this scheme, but it was only on paper. So FINDA did not reach the patients in time. We will talk about it in later. The allocation remained only on paper. So the 50 lacks or the $60,000 that they had promised didn’t go to the patient because of the fund crunch. The government stated that they don’t have enough fund to help the registered patient. And even with the fund that they have given to the central of excellence, only 30% of the funds were being utilized. 70% remain unutilized. And this is a time when patients were really 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.
(07:36):
And the doctors were also helpless. They were completely dependent on the fund that were being released by the central government. So when we talk about tracking, so I had filed several rts, which is right to information in India under this application as an Indian citizen you can ask for some documents and data from the Indian government. So we will talk about it in the later slide just to give a gist for your understanding. So there is no module. So in my RTI response, the Indian government had stated that they are not maintaining the ledger of total number of applications they are receiving. So there is no centralized data form of understanding how many patient or how many patient actually need this lifesaving fund from the government. And when we talk about crowdfunding, the Indian government has stated for the group three patient who need lifelong treatment and expensive treatment, the Indian government stated that we would start crowdfunding for them to help so that the philanthropies store people, whoever want to help the patient, they can contribute, but it is a complete failure. So far they have raised only 400 pound through crowdfunding, which is not enough to even help a single patient.
(09:01):
So meanwhile, while the government was completely, the policy was completely a failure, many patients were suffering patients, children especially have died while waiting for the fund to be released. So the group of parents and NGOs who are working for rare disease, they approach high court including Dly high code, Calcutta high Code, a different part of the high court. Then they came together and filed a single petition with the Dly high court requesting them to release the fund and increase the fund amount and the high code to ance. And they also outline that just because the funding is huge, it doesn’t mean that you will stop the funding or you will not release the funding because this affects a limited number of patient. So they’re, here comes the role of health as a human right issue. So being citizen of a country where we have the voting power, we are paying our taxes, everyone should be treated equally irrespective of the epidemiological significance or the spread of the disease.
(10:10):
So the high court gave a directive to the Indian Health Ministry to start a rare disease funding of 15 1 5 0 million for the treatment of the patient. So this was very, the patient again, got a new hope that we will be able to survive, we’ll be able to provide treatment to our children. But Indian government made an appeal to the Supreme Court against this order. It has been six months now that the patient in India, they’re not getting the fund that was supposed to be released for their treatment, especially in group three who were the most vulnerable ones. And this month on seventh or ninth, I think the last latest hearing and in which the Supreme Court had again extend the hearing time and they have pushed their hearing to next year in March. So you can understand that it has already been six months that this patient are not getting their treatment lifesaving treatment and they have to again wait for another five months to even know if they would be get the funding or not.
(11:23):
So there are many children whose treatment has completely stopped. And when reporters had asked the question to the Indian Health Ministry, they only cited that we don’t have the fund. We cannot provide money to so many patient. So here came my role as a reporter. So I started following the money through filing RTI right to information. Now I got several information through right to and by reading hundreds and hundreds of copies of the court proceedings and affidavits, which gave very shocking details about the fundings. So to start with. So between 2021 when the policy was formulated till last year, the government has had given 12 million to the center of excellence for the treatment of the patient, but of which only five point 42 million were being utilized, which means only a minimal amount of money were being given to the patient who were really struggling, especially these are children were struggling for their life.
(12:38):
So the annual need for the treatment of this patient is in, it’s a huge amount, it’s almost 282 million. But through our right to information, I got to know that they had released only 1 91 corro, which is almost one 25th of the requirement of the patient. And even from the nine 38 million which were being allocated for the rare disease, didn’t have anything to deal with the A program. So the D High code had given an order to the health ministry that you need to spend a certain amount of money from your funding from the given funding to sensitize three people. Because you need to understand in rural India where people doesn’t have farmers and agricultural people who don’t know how to write in English or even to sign, they don’t have the knowledge that such a funding is available, which can help to make their children survive.
(13:49):
So the government had asked them to spend on a campaign and through right to information, I found that they hadn’t spent a single amount of money. So out of the five 70 Register LSD patient, most of which are again children, only 1 0 7 patients are receiving treatment. And by the time I had done the story already, the dropout rate of the 1 0 7 patient had already increased because of lack of funds. And as I told, the government had started this portal and this crowdfunding portal has already registered for a thousand patients who are suffering from group three rare disease. And the government has been able to raise only four LAC rupees, which is around 4,400 pound.
(14:40):
So as I said, while waiting for the fund, many children died. And one of the case studies that I have written for my story, which would be published I think today or tomorrow, is about this child. So I had interviewed this child two years back for another story. So she was suffering from gosh disease, she was diagnosed at the age of one and her treatment required one LAC Indian rupees for treatment, two injections per month. Her father is a farmer from Ttra. He sold his land, he sold his, the only savings he had, he gave away his savings, he gave away his gold for the treatment of the child and he really struggled a lot. He went from one hospital to another hospital for the diagnosis. Then after diagnosis, he again traveled for 200 kilometers or so with the child just to get the fund, but he never got.
(15:47):
And the child died this year. And this is the quote the father had given that my only child died before my eyes because I couldn’t afford the medicines. So this was one case study, I’m sorry, I’m citing this as case studies, but these are all real life patient who are dying because of fund. So this one, another child who also died this year. So in his case he was diagnosed at the age of two, but he had to wait for seven years just to get a therapy. So his father who was working with a multinational company, he approached the Lihi court and after a fight for almost years, he got the treatment pharmaceutical company through a clinical trial, but it was already too late. His organs were already being damaged. So at the age of 13, he passed away this year. So his father has now started an NGO to help other patient and children suffering from rare disease. So while speaking with me, he said that by then his body had already suffered irreversible damages. He passed away five years later. This shows how critical it is to start this treatment early. So because the children are not getting the treatment, or in many cases the treatment haven’t even started because the lack of fund, their body is undergoing irreplaceable changes. Even if they start the treatment later, their body wouldn’t be able to recover the damage that is already being done.
(17:29):
And this is one more case. The child is also suffering from, gosh, type one. So she was diagnosed during lockdown. Her father is also very poor economic background. They couldn’t afford the treatment. So they reached the file petition with Calcutta high court, they got a funding, but now they have already the cap of 50 lax rupe. So the Indian government has refused to release any more fund because they have raised their hand. I said, we have already given you the fund, so we can’t do anything if your child is dying. It’s not our responsibility. They have completely refuted the human right needs that we are also human being. These are also children, Indian citizens who are dying. So this child, it’s been almost eight or nine months, I think her treatment has stopped and she has already developed hearing loss. She can’t, she has developed almost 80% hearing loss because her treatment has stopped. So this is the code that her father was going without therapy. I’m watching her to go back to where she was. And these are all real life case studies. So this is one investigation that I have done. If you have any query or anything you can ask me. Does anyone have any in the chat box, right?
Rachel Jones/NPF (18:59):
Not yet.
Rupsa Chakraborty/2023 NPF Rare Disease Fellow (19:00):
Okay. Okay. So this is one story that I have worked upon, which was the real life date of the children because of lack of fund. So as you know that I have already, I was in 2023, I was a fellow of the same fellowship that you were doing. So during the fellowship I had done several stories. I have listed some of the stories here. So lexical cell disease, aplastic anemia is one of the blood disorder which are categorized under the rare disease. So in India, what happens for sickle cell, even for aplastic anemia, there is no cure as such other than bone marrow transplant. But in India, especially in bigger cities, like in Maharashtra or U pr, there is no bone marrow transplant facility for elder patient. So patients are literally, again, dying because the Indian states or state government doesn’t have bone marrow transplant facility for adults.
(20:04):
So this was one story I had done. The second one is about nbar. I know I have a friend, I have worked with her in Maharashtra, she’s from Maan, she’s a very good reporter. She’s part of the fellowship. So she would know. So in Nbar there’s an indigenous community. And in S sickle cell is very common among indigenous community, tribal population as we say. And when I had visited this rural area, it’s a very north, it’s very far western side of Mahara in the border of Gura. So most of this tribal dominated area, 80%, not 80%, at least 70% of the population have sickle cell anemia. And they developed deformities. And even many died because in rural hospitals they didn’t have even basic medication like folic acid or even pain reliever. And as they don’t get access to the treatments, many of the patient, even younger children, had developed deformities in their legs, in their hands.
(21:12):
And in sickle cell anemia, you often get internal internal blood injuries or inflows. So in that case it’s very important to have blood transfusion. But when I visited these districts, seven villages in this district, none of the villagers had blood banks. So in case of emergency, they have to travel or run for four 40 kilometers or 80 kilometers just to reach a blood bank. And then even often, in many cases, even after reaching the blood bank, they find out that they don’t have the blood of their blood group. And one thing I would really request the fellows to follow is that there is no, across the world, there is a lack of data on fertility related to rare disease. So what happens when a patient, for example, Pompe disease, if a patient dies from Pompe disease, it’s mostly cardiac arrest or stroke. So in the death certificate, they normally write cardiac arrest or stroke as their cause of death.
(22:26):
But they never ever mentioned that the child primary cause of death was because of rare disease. So in India, we don’t have any registry. If fellows from India can investigate into the matter filing RTI or from your sources from the health ministry, how many people are on paper actually dying from rare disease. The number is huge. I can also help you to get in touch with the NGOs who are working for this because there are young children who are as young as one year or 2-year-old who have died because of sickle cell disease because you get blood clot in your brain. But these are all classified as stroke. So if you can, anyone can look into it. And the third story I had done about nhi, she was the India’s first diagnosed Pompe disease. She spent all her life on wheelchair and her father had started the first NGO on rare disease.
(23:31):
You might know him also Pana. So it was about his daughter who was first diagnosed Pompe disease patient. And they took them for about 10 years for her to get the diagnosis. And again, they had to sold their property, they completely got bankrupt for her treatment. But again, she died in 2023. And even on her death certificate, it was the brain stroke, which was cited as the cause of death. And just to give a quick story idea is that her brain was donated to Brain bank in Bangalore. So there is a, Bangalore has started bank called Brain Bank. So they are taking the brains of patient who was suffering from different kind of diseases, rare diseases after their disease so that they can run their genetic, not experiments, but research on their brain to understand how patient to patient, depending on their rare disease, their brain functioning or their molecular change according to their disease.
(24:51):
So if anyone can follow, I can also help you to get in touch with the professor who is running the project in Bangalore. It’s a very rare kind of project. And the third was that despite help from center patient with rare disease, skin suffer a lot. So this story I had done in 2021 when the Indian government had started this rare disease policy and I had shown how the families are going bankrupt, they have to spend a lot on diagnosis. So under the policy, the Indian government had said that they would give a huge amount of fund to this center of excellence so that they can develop their own infrastructure lab so that they can undergo the diagnosis or treatment test under one lab so they don’t have to send the samples from one city to another, which is very expensive, especially for people who are farmers who are agricultural, who cannot even fund their or cannot even arrange their daily meals. They don’t have to spend their savings or land for the treatment. But not a single amount has come from the Indian government to start this state of art infrastructure for this early diagnosing and laboratory work. So yes. Any questions?
Rachel Jones/NPF (26:09):
My goodness, there are so many terrific questions if you would. Unshare, why don’t we get started on that? And the first one comes from Simon Spichak. Please introduce yourself to Rupsa and ask your question.
Simon Spichak | Being Patient (26:27):
Hi, my name is Simon. I’m a journalist based have Canada. I do a lot of work on dementia and then I dabble in some work in Canada, which sometimes involves filing these public information requests. I want to thank you for all of your thorough ind diligent reporting. These stories are absolutely heartbreaking. Now, I was wondering if you ran into any difficulties accessing the public documents that you were filing for and how you navigated those problems. Here in Canada we have a similar process, which is the bane of my existence. We face a lot of delays, unnecessary redactions, and sometimes we need to file formal complaints to get documents that should be public. So I’m wondering if you can share some tips for us for filing and obtaining these documents.
Rupsa Chakraborty/2023 NPF Rare Disease Fellow (27:16):
So we already have a section where we will discuss about the problems that I had faced while covering the rare disease issues. But just to quickly respond to that, yes, I had to struggle a lot, a lot. I have filed around 10 RTIs, of which I had gotten response of three for the remaining seven of which I filed first appeal for three more. Then I got response from two of them. But it took me around six months to do the investigation because I wanted to do a thorough investigation, especially on data. Because whenever I, even previously when I was doing the story, I would reach the government for their comment and all. They would always say that there is nothing, it’s all fake. The NGOs are just saying wrong thing, nothing is happening. So I really wanted to collect the data so that they can never refute the claims of a journalist and the problems that are happening on ground. But yes, one thing I would suggest you that be very persistent, keep filing, and in many cases in my case, because the doctors were really helpless, they were seeing the patient who were dying, they were begging them. So many of the doctors from Maharastra, they had given me very in-house documents, off record of course, but they do help a lot.
Rachel Jones/NPF (28:47):
Let’s go to Shailaja
Shailaja Tiwale | Independent (28:51):
I just want to know Thata, as India has already started the registry for rare diseases, but I want to know that how this registry is transparent means the register the patient through only see you or any other method. And across India it registered the patient or not yet?
Rupsa Chakraborty/2023 NPF Rare Disease Fellow (29:14):
Okay, so the register is only for group three patient. Okay. So when we say that we have an estimated of 70 million patients, so they’re not taking the registration from group one or group two, it is only for group three. And the registration can only happen from this 13 center of excellence. So for example, if a person from Gujarat wants to make a registry in the center of excellence, there is no center of excellence gura. So the patient from Gura come to Mara, even patient from Raja, they come to Maharashtra, which is kilometers away with their sick children to make the registration. So in the court hearing, in one of the NGOs have also requested the government to start the center of excellence in across all the districts, or at least in all the states. So that there’s better accessible and the patient who are really sick, who’s puking, who’s falling sick, fainting, they don’t have to carry them all the way to the center of excellence for the diagnosis and registration. So you can also check it up like patient from Raan and their information are all available on the registry. Their contact numbers are also there.
Rachel Jones/NPF (30:25):
Great. Sharon, you have a long question, but if you could summarize it for Rupsa, please do.
Sharon Muzaki | Nature Africa (30:36):
Oh, okay. Thank you so much Rupsa. My name is Sharon Muzaki, I’m based in Uganda. I contribute to Nature Africa. Maybe just to summarize, like Rachel said, what do you think is that single thing that is overlooked by US journalists, those outside we don’t fully understand about real disease policy areas in the global south? Maybe that is what is that that we do not understand?
Rupsa Chakraborty/2023 NPF Rare Disease Fellow (31:06):
As we say, rare disease is called orphan disease because very limited people or patients are being affected. So even the government or the pharmaceutical companies really don’t care. So while doing this story, I had to go through all this affidavits that were also being filed by the pharmaceutical companies. So in one of the affidavit, in a very heart ranging statement, one of the pharmaceutical companies had stated that if we make these drugs after investing lot of money, millions of dollars in our research, our profit level will be really less because the number of patients are affected are less and they would not be able to profit from this. So they’re not considering the human right angle in health where they’re only looking after their profit in for pharmaceutical company and for the government. Also, they say that non-communicable disease like diabetes, cardiac arrest are more important that people are more affected. For example, in one of my classes, my professor had told me that philanthropies like Bill grad would never be interested to invest in funds on rare disease because here the outcome is very late. It takes years of of research. So these are, I think the funding and also the intention to save the life of the people who are less affected. The population number is the most important thing.
Rachel Jones/NPF (32:42):
Let’s go to Asako.
Asako Takaguchi | Kyodo News (32:48):
Hello Rupsa. My name is Asako and my name is Asako and I am a journalist based in Japan. So thank you for sharing your wonderful work. It seems like your reporting exposes that government negligence and the failure of the society. So I was wondering what has been the most challenging barrier you’ve faced while covering these topics and how did you deal with it? So ab bet you must have faced, was it like government resistance or difficulty working with the patient organizations or lack of funding when doing investigative reporting?
Rupsa Chakraborty/2023 NPF Rare Disease Fellow (33:30):
Okay, so my biggest challenge was accessing data because see, I believe in quantitative research. So to prove a point, I need data. So because 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 also when I have done very qualitative research, which were most basically on 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 of course correlate with the case studies, court proceedings and all.
(34:26):
Also the acceptance among the policy makers is very less because again, less people are affected and the treatment cost is huge. They want to use this 1 million pound for the diabetic patient rather than focusing on a treatment which is very limited significance spread. So yes, and also convincing my editor, because I will talk about this in the following slide, convincing my editor was a big challenge irrespective of the newsroom where I have worked, because they always think rare disease means something like four kg tumor has been removed from a stomach or someone has eaten hair. So they don’t understand the concept of rare disease. So yeah, convincing editor was one of my biggest struggle.
Rachel Jones/NPF (35:19):
I want to go to Precious, introduce yourself and ask your question. Perhaps her internet is not working. She wanted to know.
Speaker 8 (35:35):
Yeah, can you hear me?
Rachel Jones/NPF (35:36):
Yes, we can hear you now.
Speaker 8 (35:38):
All right. Good afternoon. I want to say thank you Al, the stories you shared have enlightening and I got to learn a lot. But I want to ask how were you able to get the sources? Okay, sorry, my name is Precious one, I’m from Nigerian, a journalist from Nigerian. I want to understand how are you able to get these sources? Because where I practice here in Nigerian, sometimes it’s kind of difficult getting the sources. I have to go to the health centers and communities to meet with health workers. But then again, it’s kind of difficult, but I would like to know other means, ways on how to get this, what is it called, the sources, the patients that have this rare disease, most especially because it’s not easy getting them around. So I would like to have and get your idea on how to get sources.
Rupsa Chakraborty/2023 NPF Rare Disease Fellow (36:32):
Okay, so this also we’ll talk about in the letter slide. I have made a separate slide, your sources for rare disease. But in my cases, my first contact was the center of excellence in Maharastra in KM hospital. The doctor there was, as I said, was helpless. So doctor first gave me a tip off that this is happening, children are coming, we are not able to do it. And there are also protests done by the parents in front of the hospital. And then my secondary source were the NGOs who are filing this petition, who were making this report and submitting to the Indian government and my third source of information that the lawyers who are filing this petition and also submitting the documents to the Indian Health Ministry for their response. And one more thing, when as I said, as a reporter, my intention has always been to have impact for my stories.
(37:33):
Otherwise there is no point of doing stories just to see your byline. So in many cases, and I also tell this to the Indian journalist here, in many cases for stories like rare disease or climate change, which are very neglected, you will never see any response or taking any response from the Indian government. They wouldn’t care about this story. So what I had done in my case, I had gathered this information earlier for another story, not so much information, but I had some information and case studies. So I wanted to file a petition with the Indian High code in Mumbai. But due to my newsroom’s policy, I couldn’t do it. But I did file a petition with the National Human Rights Commission and after which four of the people in Maharashtra got fund because of the petition that had filed. So in cases where you don’t get any response or direct impact of your story, you can always use this kind of platforms to get impact of your stories.
Rachel Jones/NPF (38:39):
I’m going to take one more question and then we’ll let you complete your slides. And that would be from Evans.
Evans Jona | Post On Sunday (38:49):
Hello Rupsa.
Shailaja Tiwale | Independent (38:50):
Hi.
Evans Jona | Post On Sunday (38:52):
Thank you so much for the detailed presentation. I’ve got one question that I would want to ask given that some countries like Zimbabwe Lake legislation specifically addressing rare diseases and its funding, they rely on outdated laws and acts that incorporate red diseases into disabled person’s ex. You understand? So what steps do you recommend for generalists to take to influence policy makers to modernize the legal framework? Formally document raised diseases in Zimbabwe and they also ensure that there is adequate funding and inclusive social services for people living with such conditions.
Rupsa Chakraborty/2023 NPF Rare Disease Fellow (39:34):
So in India also we have the same problem. So patients suffering from sickle cell disease, were supposed to get disability certificate and also funding from the Indian government. This is not happening. Many people are struggling. But what I would suggest is that do a comparative study. For example in France, they do get this certificate of disability and they also get benefits in government jobs and not. So talk to some case studies or patient who have benefited through the scheme in France and do a comparative analysis of the people from your country who are not able to get the benefit and how their life is being impacted. So for example, I am from France, I have a sickle cell disease with disability certificate. So I have a government job, I’m able to fund my treatment and I’m having a normal life. Same way from your country, you get a case study of a person who is really struggling even to get a fund or buy medication and how if Zimbabwe has this policy in your country, how it could have benefited the patient. But it would be important if you have the number of data, for example, sickle cell, how many people could have benefited because number is very important. I will talk about it because talk convincing your editor is important and now everything has become business, how many clicks you are getting on your story. So very important to show how many would get affected.
Rachel Jones/NPF (40:59):
Thank you so much. Why don’t you move to the rest of your presentation?
Rupsa Chakraborty/2023 NPF Rare Disease Fellow (41:04):
Yes, and I will share this slide. So my biggest, biggest, biggest problem was convincing my editor who had no idea what is rare disease. So every time he would go with a story at rare disease, he would say rare disease, who cares, who reads? And so yes, I really struggled to convince him. So I have pointed out the six pointers that we will discuss with case studies, how it helped me. And also again, I’m learning now I’m working as a independent journalist while studying. So I’m still struggling. I had to send my story page to 10 people and one responded. So yes, I’m also struggling. So if you have any suggestion, please do give it to me. So the first is give human faces. Okay, so editors or readers don’t care if you just write about rare disease. Okay? So you have to give human faces.
(41:57):
For example, I had done this story during the fellowship. I hope it opens. Yes. So I had made it very human interest like how this child, if the twins fall asleep though they would die. So I had given very human angle to it, which helped me to really convince my return, who was like, oh, the child would die if they fall asleep. Okay, one second. Now I can’t find my PPT. So this is in the side. You can see there is one more case study, which also shows which has a given very human angle to the story, how the child in a rare condition and every time is taking, and this is also a story from India, how they need 2 million, I think 2 million pound for the treatment of the child. So give human angle. The second point being give the shocking line. So I know in your previous station you have been told how to be sensitive towards these patient families even while interviewing.
(43:00):
But as by my experience, I think you have to give very shocking value to the stories while being very sensitive towards the subject. In many cases, when I was doing some stories like this where I had to literally utilize the uniqueness of the case to give the headline or to sensitize it in a way so that readers can read because this is how the world function. I’m really sorry, but that’s a reality. So I did take permission from the parents that I’m going to give this headline, it may look very sensationalized, but this is how people would click and read about it. And you might get some funding from the people who become involved in the case or the case study or the plight to the people in want to give funding. So this is one story again from India, I think it was being done by Guardian.
(43:57):
So it’s like about this 14-year-old boy suffering from a rare disease who had a hundred bone fractures. So if I just go to my editor and say that this child is suffering from some rare disease, so every time he works he breaks a bone you wouldn’t have interested. So this is story not done by me but another reporter. So if you go to your news editor and give this striking pointers that a child with a hundred bone fractures is still living because of the rare disease, he would again get involved in the story because again, to be very frank, be it guardian, be it B, B, C, I’m sure there are other reporters who would also agree with me. Everything has become very digitalized and everything is being monitored. How many clicks you are getting on your stories, how many people are reading your stories to what land they’re reading your stories.
(44:43):
So it’s very important also know to how to sell stories, especially in cases like rare disease and climate change. And also I had cited this case study of a family where the parent lost all the three children because of the similar rare disease case. So they had done a thorough interview of the family with the pictures and interviews of the family members, how helpless they were when they saw all their three children die in front of their eyes. So these are all hooks to your stories, please function. Okay, yeah. And again, the economic angle, we had already spoken about it. Just to give one more example, this is a very good story. So Supreme Court had asked why the cost of drug for SMA, okay, which is very expensive, which again comes in the group three is so expensive in India and it’s more expensive in India than Pakistan and China.
(45:39):
So especially in China, they are developing these drugs, indigene drugs which are much more lesser expensive. And also research have shown that they’re quite promising than the available drugs in India, which are expensive. And even in this case we have in the headline, you can see that they have given the headline of 2.1 million drug to fight rare disease. So yes, so pharmaceutical is something that I think editors are really very interested in, either because of love or because of hatred, but they’re very much interested time proximity. So this is very, very important. Now because of sensitization and better diagnose, you will see that many celebrities or even known people are being diagnosed with rare disease. So always use this opportunity to sensitize people. Write your stories around it. So I had done this story on Victoria Grace. I will not click on it because I will again struggle to find my PPT.
(46:46):
So just from the headline you can understand. So in 2023 when I was a part of this fellowship, again, Victoria Gray was invited to give a talk. And that time exactly, I think that month only UK government had approved CRISPR therapy as a treatment to treat sickle cell patients patient with sickle cell. So I use this proximity and time proximity and I published her interview and it was on the front page story across the nation how UK approves the gene therapy for sickle cell enemy. And we know that India, we have the second highest burden of sickle cell patient. So how this expensive therapy could be developed indigenously in India and how it can benefit patient lacks of patient from sickle cell anemia in India. So this I had utilized and even like we know about Donald Trump crackdown across the world in health. So this is a very interesting story and you can write down the headline and read it later.
(47:52):
It’s about how because of the fund crackdown on foreign grants, patient treatment of rare disease are been affected. In fact, if anyone from us can do a story, unlike many of the clinical trials for rare disease are also been impacted because of this crackdown. So if you can like to investigate that for the fellowship, and again, science is something that always intrigues us, be it a 5-year-old kid or beat my father, everyone likes to read science fiction or not science fiction, but sciencey things. So if you have anything going on in your country, like the government is developing some heterogeneous CRISPR therapy, which will be very cost effective help with 90% survival rate, please follow the scientists. They will, at least in India, they will not talk openly even to get an interview, have to send an email to their institution, then get the approval.
(48:58):
Then even if they talk to you, they will ask you to send their interview before publishing. But they do talk anything off record because I know there is a scientist in India who is doing a genetic study on mini brands. So mini brands is something like peanut shaped brain. So they genetically develop it and then they are running this genetically engineering experiments on these mini brands to understand many rare diseases in India. Because in rare disease patients we have one, I spoke about the brain bank in Bangalore and this one is in indeed where I think it’s in the first phase. So you can get in touch with me, I will be able to help you with the contact of the professor. So yes, science is a very interesting thing and they also interest our editors. So we all know about solutions journalism. This is not exactly an example of solution journalism, but it’s also important to give something good that is happening if the government is doing anything. Patient advocacy group are doing anything like in this case in uk, millions were invited for early diagnosis of their possible rare genetic disorder. And also how a blood test developed could speed up diagnosis in rare disease cases in babies. So do keep an eye on the scientist, as I say, and also on their website, follow their websites.
(50:31):
So my challenge is in covering rare disease, of course as I already spoken about accessing data, because I very much believe in compiling data. I have mostly worked in data sector like data journalism. Because once you have the data, there is no way that the government can refute your claim and also you can approach a human right commission or your material can also be used for filing petition because data never lies. Okay? So yes, the officials were very tightly because some of them didn’t care and some were obligated not to talk to the reporters like me. But again, at the local level, the doctors from the center of excellence were really helpful. They gave me many documents, they gave me access to the fund. They had sent a application that they had sent to the central government, but the central government refuted the application. They refused to give the fund. So I did have access to those documents given by the local doctors. So third point, choosing case studies.
(51:38):
So when I was doing this story, it was really tough to choose my subject right, whom I’m going to show in my story because I know 50 children whose fund have been stopped and all of them are slowly dying. So whom do you choose? So I prioritize because I was very confused and ethically I didn’t know whom to prioritize in my story. But yes, I chose patients who were most vulnerable, especially from poor economic background and whose health were progressing faster than sorry, whose deterioration was progressing faster than other patients. So yes, choosing case study was important and impact of the story. As I said that in rare disease cases it’s very tough to get direct impact and immediate impact, which we see for other stories. So I did approach human right commission because I couldn’t file a petition because of the policy at my newsroom.
(52:41):
But yes, impact of the story was very convincing. My editor I had already spoken about. Okay, last slide I think. Yes, I think I have spoken already too much. So primary source for journalist covering rare disease policy documents. Okay, please read the policy documents in India, the national rare disease policy is like a hundred page, not a hundred page, at least 50, 60 pages. Read everything from start to the end, okay? You will find many pointers like 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 policy paper of your respective government, you will find many things which is not being implemented. People are still suffering because of those are not being implemented. So you can always follow up on those point, at least you’ll have a starting point.
(53:35):
NGOs and parent group do get in touch with them. They are very important. But of course they are also very sensitive towards this topic. So you will always have to crosscheck the claims that they’re making, the documents that they’re providing. You just don’t blindly believe whatever they’re saying. You have to crosscheck as a journalist. Court reports are the most important thing. If there is a court petition that is happening, even if an independent case, please get access to the court paper that you can easily contact the lawyers there because the government in response gave a lot of affidavit and where they provide a lot of unpublished data, which even through RTI, they will not be able to sharing with you. So code records are very important. Scientists again, have already spoken, they will not go on record, at least in my case they didn’t go on record.
(54:30):
But they will give you information what is happening. Because I know one scientist, again from dhi, the national capital of India, he is struggling to get fund to develop indigen, develop CRISPR therapy for sickle cell patient. It’s been almost two years that he hasn’t received the fund from the Indian government for the research. So if you can expand it and do a study like how much Indian government is spending for the research, I understand that you don’t have the fund to provide their treatment costs, but at least if you are doing anything to find an alternative for their care and lifesaving procedures. So you can do a story on that. And also scholar Google Scholar is very important. Okay? You will get many published articles on Google Scholar. You can contact the professors. They always give their email id, so please do contact them again off record. They will help you a lot. So yes,
Rachel Jones/NPF (55:36):
This has been a absolutely brilliant presentation and I think the journalists have benefited tremendously. I want to, although there are many interesting questions that they have. I would like to give the last opportunity to Marcia from Brazil because she has a very interesting question to pose to you. Marcia, are you there? She may have stepped away, but she was wondering, let’s see if I can find it. Once you’ve done the reporting, once you’ve told the stories, what’s the next step? Do you follow? Do you
Rupsa Chakraborty/2023 NPF Rare Disease Fellow (56:23):
Yeah, I follow up. I follow up. I do follow up. I literally fight with my editors and I do follow up even if they’re not letting me write the story. I do off record. I do push the officers to do something, but it’s not as a journalist, but as a human being,
Rachel Jones/NPF (56:42):
That’s a perfect way to end this conversation. I think so many of us pursue journalism because we want to amplify voices and help people feel as if they are being heard or their concerns are being heard. So you have given us, and again, a brilliant primer and lesson in how to do this in the rare disease realm. So I’d like to take this opportunity to thank Rupsa.
Rupsa Chakraborty/2023 NPF Rare Disease Fellow (57:12):
I know, so you can share my email id. If anyone has any doubt or any query, I can always help them with this, even for the stories from Indian Angle if anyone wants to get in touch.
Rachel Jones/NPF (57:23):
Thank you so much, Rupsa.
Rupsa Chakraborty/2023 NPF Rare Disease Fellow (57:24):
Thank you so much. And all the best is a very fantastic fellowship. This is my best test fellowship if I can say so please do enjoy it.
Rachel Jones/NPF (57:33):
Take care and stay warm. I’ll be in touch with you.
Rupsa Chakraborty/2023 NPF Rare Disease Fellow (57:36):
Yeah, bye.
