Victoria Gray and Bijal Trivedi Transcript — Nov. 17, 2025
Rachel Jones/NPF (00:00:00):
For our next session, we’ll continue the theme of Reimagined Futures for people living with rare disease. One of our next speakers embodies the incredible promise that technological advances are creating in the rare disease realm. After a lifetime of agonizing episodes due to sickle cell disease in July of 2019, Victoria Gray was the first person in history to receive CRISPR base gene cell therapy. She now lives a life completely free from pain. When before crispr, she admits that she was ready to die to be free from suffering. Victoria is based in the US state of Mississippi, but today she joins us from Tuscany, Italy where she was invited to share her remarkable journey. Victoria, thank you for joining us.
Victoria Gray/Sickle Cell Advocate (00:01:00):
Thank you for inviting me. It’s an honor to be here.
Rachel Jones/NPF (00:01:04):
Victoria is joined by Bijal Trivedi. She is a veteran science journalist and author of the award-winning book, breath for Salt, a Deadly Genetic Disease, a new era in Science, and the patients and families who changed medicine forever. Bijal was also a 2023 NPF Rare Disease Fellow, and were eagerly looking forward to the publication of her next book, which will be entitled, A Ghost in the Bloodline, an Expansive Investigation into Sickle Cell Disease in India, Nigeria, and the US. Bijal, thank you so much for joining us too.
Bijal Trivedi/Journalist and Author (00:01:47):
Oh, thank you for inviting me. It’s great to be here.
Rachel Jones/NPF (00:01:51):
So I’m going to start with you, Victoria, and as I mentioned in our prep conversation, a picture is worth a thousand words. So Sidney’s going to bring up a picture for us to start this conversation with and then we’ll take it from there. So Sid, can you pull that up for us? Yes. Pulling it up. Now, this picture meant so much for me. I did an Instagram post about it, but it’s a picture of you in a hospital bed pre crisper, and then a picture of you holding your granddaughter. That’s all I’ll say at this point. Tell us what we need to know about the difference in your life and your journey in these past few years.
Victoria Gray/Sickle Cell Advocate (00:02:45):
Well, we will start with these pictures. The first picture is a picture of me and my daughter, SIA. I was in the hospital in terrible pain. It was one of the years where I couldn’t walk and the pain was so severe I couldn’t even hold my daughter, so she had to lay in the bed beside me for this photo. And fast forward six and a half years after crispr, I have ADA’s daughter, my granddaughter in my lap on a park bench. It means so much to me. Before I was so limited in life and my life was determined by pain. It limited everything. The time that I spent with my children, the small joys, I struggled to even take my own kids to the park. There were many days that they wanted to go to the park even when I was home, but the pain would be so severe and the fatigue would be so extreme, I just couldn’t do it and it hurt.
(00:03:51):
So to be on the other side of CRISPR and without pain, without restriction, and I get to experience this type of joy and pleasure with my granddaughter taking her to the park and holding her in my arms on my lap, it’s something that I never thought I would get the opportunity to experience. Rachel mentioned before that, before I wanted to die, I felt like I was only existing. My life consisted of me going from the bed to the couch to doctor’s appointment hospital if I had enough strength to church, and that was it. And this was a everyday routine where I even needed a personal care assistant in my home to help with a bath because my body would be so fatigued and wreck with pain that something as simple as a bath would cause heart palpitations and sweats. So now I’m here without limitations in Italy and have recently joined Bijal on a hike with other warriors and healthcare providers in Colorado and have climbed to the heights of 12,500 feet elevation. And I’m just grateful to God for not honoring the prayer of death, but allowing me to have a little piece of heaven on earth. Or
Rachel Jones/NPF (00:05:28):
I’m going to ask you at this point, Victoria, to fill in the blanks on your lived experience. Tell us about where you grew up, your family, and when you first realized what was going on with you in terms of the pain and what you were experiencing.
Victoria Gray/Sickle Cell Advocate (00:05:48):
I grew up in a small town in Mississippi called Goodman, population less than about a thousand at that time when was growing up. And my diagnosis came at three months just from my mom giving me a bath in October and starting to cry. And that meant she had to take me to the hospital and that’s where she found out I had sickle cell disease. And they told her that I may only live to see seven years old. And my earliest memory is four years old. I was in pre-K, called a head start back then and spent the day at school. Seemed to be fine. I get home and as I’m changing my clothes to go play outside with my friend, I get this lightning type pain. It hits me fast in one arm, travels across my chest down the other arm and in minutes my entire body was engulfed in pain.
(00:06:49):
I fell to the floor. And that meant my grandmother, she had tried the hot towels, the doctors say massages my Tylenol threes that I had at home. None of that worked. So for me, that meant a week in the hospital receiving blood transfusion, IV pain medicines, IV fluids, and still have to come home for another week trying to recover to what my normal was. And that will repeat in my childhood every three, six months if I was lucky. It caused me to miss. So, so many days from school missed activities. I couldn’t participate in pe, even a dream, just as small as wanting to be a cheerleader. I wasn’t allowed to participate because that exertion, any exercise changing weather stress were all triggers rigorous. So my life was really dictated by sickle cell disease. I wanted to be a doctor in a college. I was deterred from being that by advisor because of the long hours, the class load.
(00:08:03):
So I began trying to be a nurse, but I couldn’t even achieve that. It took from the year 2003, me graduating high school to 2010 to even qualify for a nursing program because I would have to start and stop with my classes because every fall or even when the season changed in the spring and we would get the winds, the slightest chill would send me into crisis and I would be in the hospital and couldn’t make up my finals. But in 2010, I had the biggest crisis in the beginning of my adult life. It took away my ability to use my arms, my ability to use my legs. I was in the hospital from mid-October 2010 to mid-January 2011. I missed Thanksgiving with my children. I missed my children’s birthday. December 15th, December 22nd and January 8th because I was in the hospital stricken with pain and had to learn how to walk again.
(00:09:09):
I had to learn how to use my hands to pick up a fort to feed myself. And that was the year I gave up on dreams altogether and just decided to go home, be a good wife to my husband, be a good mom, but even sickle cell made that a challenge and almost impossible. I would get swept away in the middle of the night from waking up 2:00 AM having crisis. And then I would get a phone call from my daughter, Adasia, who you saw in the picture. And she’s like, mom, I was crying last night. And I said, Adasia, why were you crying? Because I saw the ambulance take you away and I wasn’t sure that you was going to come back.
Rachel Jones/NPF (00:09:58):
The incredible level of not only personal suffering but the impact on others around you, it just simply can’t be overstated in this conversation. And one of the things from your when you joined us back in 2023 that I will never forget is you’re talking about being in the clinical setting, being in hospitals and how you as an African-American woman in many of those settings were treated when you presented with pain, talk about that issue dealing with rare disease. And
Victoria Gray/Sickle Cell Advocate (00:10:36):
Yes, because I was African-American woman and I had sickle cell disease that disproportionately affect people of color, I was overlooked, especially as an adult, as a kid, my weights would be five minutes or less as an adult, they would leave me in the ER waiting area anywhere from six, sometimes 12 hours in severe pain and it hurt. One particular visit, I had been there 12 hours, a white woman walk in, she has pink eye and she immediately gets called to the back while I’m there on the floor, can barely breathe. And I’ve been experimented on against my wheel, against my knowledge. I had been in the hospital, I remember it vividly. It was July 4th and I remember it because I had bought some bouncy houses and swimming pools. We were going to have a celebration with my kids at my mom’s house, and I was looking forward to that.
(00:11:50):
But I had a crisis and I was impatient for a few days, but I thought I was improving because my regimen was good and I thought I was getting better. I get a nurse who I thought was trustworthy because I’ve seen her before in the er and it’s time for my medicine. But I tell her I want to sit up on the couch. I’m tired of laying in the bed. She comes in, she gives me medication. I immediately get so dizzy to where she has to assist me to get back in the bed. I fall asleep for about five hours. I wake up and it’s like day one of having a crisis. It’s so severe. I was so confused. So when I called her in the room, I asked her, I said, I don’t know what’s going on if the medicine is failing, I thought I was getting better, but my pain is so bad.
(00:12:48):
I said, I’m never going to be able to get out of here. And she said, well, actually it’s been over 10 hours since you had something for pain. And I said, no, you gave me something for pain about five hours ago. She was like, no, I gave you a big dose of rine because I just wanted to see what that was going to do. So she gave me a drug that is usually given pH nausea in a small dose, but it caused a sedating effect. But she had tripled the dose that a patient could receive on her own. And when I made complaints to the head of nursing hospital administration, they dismissed it. They was like, oh, we don’t feel like she did it maliciously and she’s new to nursing, so we’re just not going to let her treat you anymore. But with that being a small hospital, some nurses had called out and a couple of days later, guess who walks into my room again?
(00:13:56):
And this is not isolated incidents. There have been multiple. And every time I complain complaint or nurses trading my pain medicine out for normal saline, it gets excused for them changing the settings on my PCA pump to where I’m not getting what the doctor ordered. It gets excused. So it pushed me to a point of fear to where I had to make a call to my mother, to my husband and make a request. My request was, if I die while I’m in the hospital, could you please request the autopsy? I would have no more use of the body. I won’t be in pain no more. But I want you guys to know that sickle cell may not be the cause of my death, but I may very well die at the hands of a healthcare provider. And that was the scariest thing to me and was the number one reason I wanted to die. Sickle cell wasn’t the reason I wanted to die. I wanted to die because the people that were supposed to help me were hurting me, judging me, saying things about me in front of me that hurt, saying, I feel sorry for you sickler. You have to get pain medicine. And now you can’t tell the difference between withdrawal and a pain crisis.
(00:15:21):
So I was labeled as a drug seeker and it
Rachel Jones/NPF (00:15:25):
Hurt. It never stops being painful to hear these stories of what you went through. So I simply can’t imagine having to go through it. Before we pivot to Bijal, I want you to take us to that moment in that hospital, I believe it was in Nashville. Is that correct? Where you were approached about this new scientific process? Tell us a little bit about where your head was and what you were told.
Victoria Gray/Sickle Cell Advocate (00:15:59):
Well, I was lucky enough to go to Nashville and meet Dr. Had offering Goul for bone marrow transplant. But while I was there doing one of the testing to prepare, I had a sickle cell crisis. And when I went impatient about day four, Dr. Frankel approached my bedside. He pulled up a chair and he asked me had I heard about crispr, and I said, no. He goes on to explain that it would be like going into a textbook with thousands and thousands of words, finding that one word that’s misspelled, correcting that word without disrupting the story. So in theory, CRISPR would go in, edit my DNA to start back producing hemoglobin F, which is a healthier hemoglobin that babies produce that don’t allow them to sickle while they’re in their mother’s womb. That typically turns out off around the age of three months. And it had the potential of lessening the amount of crisis I had by half. And so my question for Dr. Frank Goul, was there a chance of graft versus host disease because that was my biggest fear with bone marrow transplant was the risk of graft versus host disease.
Rachel Jones/NPF (00:17:20):
Tell us quickly what that is.
Victoria Gray/Sickle Cell Advocate (00:17:22):
Graft versus host disease would mean I would have autoimmune disease because my body would recognize my brother stem cells as something foreign and then attack to kill those stem cells and put me at a higher risk of organ failure and I would have to be on immunosuppressants. So I didn’t want that. And that was something that I prayed to God about in private. So when I asked him was there a chance of graft versus host disease and he said no, because the cells I would be receiving would be my own. They would take ’em out, do the edit in the lab and then give them back to me so my body would welcome itself back home instead of going under attack. My second question was if it failed because they explained that I would be the first patient to ever try this for sickle cell disease, would I still be able to move forward and do a bone marrow transplant with my brother because I just wanted to live for my kids. And once he said that, if it failed after one year, I would be able to move forward. I knew then that that was the treatment that God had waiting for me in Nashville.
Rachel Jones/NPF (00:18:37):
What an amazing story. We’ll get the rest of it after we move now to Bijal. And Syd, could you bring that picture up once again of the folks on the mountaintop?
Sydney Clark/NPF (00:18:51):
Yes.
Rachel Jones/NPF (00:18:51):
Just bring it up once again, Bijal. You were on that hike and you at that point had done a great deal of reporting on your book, A Ghost in the Bloodline. So tell us about this journey and what you were thinking as you accompanied these people like Victoria on this hike,
Bijal Trivedi/Journalist and Author (00:19:16):
This was a reporter jumps at any opportunity to go into the field and be with the people they’re writing about. And I’d already spent time with Victoria in Mississippi learning about her life there and her childhood and meeting her family. And then she told me that she was going to do this crazy thing of climbing a peak in Colorado, which I live at sea level. Sea level is great. There’s plenty of oxygen. And I couldn’t understand why she was going to do it. And then I suddenly said to her, I said, do you think I can come as well? And so I reached out to the doctor who was arranging this whole trip. And basically it was a real gamble for Victoria and the other warriors to do this because for their whole lives they’d been told to avoid cold, to avoid too much exercise because that could cause fatigue and fatigue drops the oxygen, which can cause a crisis.
(00:20:24):
And then at high altitudes there’s very little oxygen as well, and that can trigger a crisis. So basically there were three or four factors that could trigger a crisis for anyone with sickle cell. And even though Victoria had had gene therapy and was living a normal life and a wonderful quality of life compared to what she had before, it still sounded like a really scary thing to do. But Victoria is kind of fearless. She can do CRISPR gene therapy, and I suppose once you’ve taken that gamble, you’re fearless about everything else, sort of fearless. I mean, we were both scared. I was scared because I was unfit. Victoria was scared because it was all taboo altitude, cold fatigue. And so the opportunity to see what her sort of resurrected body was capable of doing with gene therapy, it was not only a testament to her strength and the strength of the other warriors, but it was a test of the science.
(00:21:40):
How much did gene therapy help Victoria and the others? Was she really capable of doing this? Could she do it? Could she push her body to extremes that she’d never pushed before? And so that’s what I was interested in observing during this trek. And we had the pleasure of spending a week in Colorado together getting acclimated. And I just want to say for all Victoria’s fears about climbing this mountain, she was actually leading the group in the hike I was actually trailing. So she is just amazing. And yeah, she did so much more than she thought or I thought or anyone thought it was incredible.
Rachel Jones/NPF (00:22:29):
Before I ask you about your new book, your upcoming book, take us back to 2023 when you applied for the NPF fellowship. At that point you were already a veteran journalist and worked for National Geographic and so many other outlets. And so I want to ask you about why you applied for the fellowship and what the experience may have meant for you.
Bijal Trivedi/Journalist and Author (00:22:57):
It was exciting to apply for the fellowship because my first book was about cystic fibrosis and that affects about 40,000 people in the US and about 105,000 people worldwide. And I was, after I’d completed that book, I had learned little bits and pieces about rare diseases that affect other populations. And I was really curious to see how that would differ and how physicians and health policy folks, how they treat rare diseases on sort of a global scale. So I got a glimpse into that world when I did my fellowship, and I believe Victoria actually one of the speakers during that fellowship as well as some people from who knew about cystic fibrosis. So it really gave me a global perspective on rare diseases that I just didn’t have before the fellowship. It sort of opened up my world to the reporting after I had taken it.
Rachel Jones/NPF (00:24:09):
So tell us now about a ghost in the bloodline. How did that opportunity come along and what have you been doing in terms of your reporting on it?
Bijal Trivedi/Journalist and Author (00:24:21):
Well, a ghost in the bloodline came along because while I was writing my cystic fibrosis book, I learned little snatches and bits and pieces about other diseases. And whenever you read about cystic fibrosis, you also read a little bit about sickle cell disease because the method of transmission, it’s an inherited rare disease, one copy of the mutation from the mother, one from the father, they come together and you have a very, very sick child, whether it’s cystic fibrosis or sickle cell disease. And so the method of transmission was the same, but they affect very, very different populations for cf. The majority of the patients, as far as we know so far, are from a Caucasian background, whereas sickle cell affected millions of people of color everywhere from Africa to India to the Middle East to southern Europe. And so it was just such a different case study that I was just fascinated. And also with sickle cell, it’s the only disease where it’s known that if you just have one copy of the mutation, it’s actually a benefit because it protects you against malaria.
(00:25:46):
It’s a very interesting disease from a scientific perspective because it was also one of the first disease genes discovered, and yet it was neglected. So it’s a clear case of you finding the cause of a disease, which is very exciting and should lead to a much quicker treatment. But because it affected people of color, the disease was just neglected and pushed to a back burner. So the science together with the social issues together with the different populations worldwide made a very compelling narrative. And also the fact that in this paradoxical sequence, a neglected disease was suddenly elevated to the forefront of medicine with gene therapy. So there were lots of interesting elements to this, and the fact that the disease looks very different on three was also very interesting to me. So with all that in my head, I had no choice but to write a second book.
Rachel Jones/NPF (00:26:51):
Well, before we go back to Victoria, I want to push that theme out a little bit more about the differences on three continents and obviously in the US in terms of maybe access to information, access to treatment or whatever. The story’s different than India, the story’s different in Nigeria. So tell us what we need to know about the disease in three different regional settings.
Bijal Trivedi/Journalist and Author (00:27:18):
I think this is the element of the story that I really didn’t anticipate. When you think of a disease and a genetic disease, you think, oh, the same mutation, it’ll create the same disease everywhere. But that’s very much not the case. In the US there are different layers of complexity. There’s racial prejudices, there is racism in medicine, not just racism in society, but you have sort of a double layering of the effect of that. You have neglect in the medical system, but you also have different genetic backgrounds. And this was something that was very interesting. So in India, the disease, while the traits of the disease like pain crises are similar, there are also other elements of the disease that you don’t get in America or that you don’t see in Nigeria. So the same mutation within a different genetic background can create a very different disease.
(00:28:29):
And then you also have different stigmas, different customs associated with each country and that population. So it just changes how the disease is treated in each continent. What was similar was the level of stigmatization In Nigeria, people don’t want to broadcast that their child has sickle cell disease, and that was the same in India. In India, a lot of the people who suffer from sickle cell are they’re referred to as scheduled tribes, and that is a particular segment of the population. And the medical care they get is terrible or negligible. They’re not given consistent medications. Very few doctors know about the condition. They are just treated as disposable, which was so sad and frightening because I met, I went to one of these tribal lands and talked to many of the patients in India who suffer from sickle cell. And they told me stories similar to Victoria’s about just being neglected by the doctors in hospitals, not given medication, not really told about their disease.
(00:29:55):
So they were left in ignorance and they weren’t getting treatment. They were treated by their families as a burden. The girls were told that they could never marry, they could never have a life because they had this burdensome condition that shouldn’t be imposed on another human being. It was really tragic. And then when I was in Nigeria, they had elements of the disease characteristics that you wouldn’t see in an American hospital, and they also had stigma associated with the disease. And it was something you would just say, the person had a vitamin deficiency, a vitamin D deficiency, oh, their bones don’t work properly, that’s why they’re in pain. And it’s all very hush hush. And then I went to some of the hospitals in Nigeria and saw the huge number of patients that the doctors have to treat. And that was really eye opening. But in each place there were wonderful physicians who were doing their best to try and change that situation. So there was hope in every location, and I was lucky enough to experience that too.
Rachel Jones/NPF (00:31:15):
That’s such an important point. And journalism can help fuel some of that hope no matter what country you’re in. Victoria, I want to come back to you and ask you to tell us about how you were prepared to start receiving this new treatment and what the process was like, what it entailed and how long you were hospitalized.
Victoria Gray/Sickle Cell Advocate (00:31:40):
The process was long. So I first had to start on an apheresis program, which I was already on, but it’s part of the protocol. And that meant me going to the hospital about every three weeks, getting connected to a machine is pulling my blood out and replacing it with donor red blood cells. And that was to try to keep me healthy and limit the amount of crisis, but I still was having sickle cell crisis and I also had to do a lot of tests. I had to do tests for my lungs to check my lung function test on my liver, my brain, my heart. So a lot of tests for that to make sure I was healthy enough to undergo the chemotherapy, which is, yeah. So the next process would be me going to Nashville to get connected to an apheresis machine, but this time it would be removing my blood after receiving a shot in the back of my arm the night before, and it would spin my blood, collect only the stem cells, and then give me the rest of my blood back.
(00:33:02):
And that process was long. It took six to eight hours each day where I would have to be on this machine. And it made me feel as though the room was shaking, but it was vibrations in my own body from it dropping my calcium levels. But once they gave me that an iv, I would normalize and I would have to do this procedure three days in a row, come back home to Mississippi for 30 days and then go back and repeat it for another three days because they needed millions of stem cells from me to have enough to store just in case things went bad and enough to edit to give back to me. And then I went home after the last collection, and I waited a few months, probably two and a half to three months, and I had to go back to Nashville after my cells were back from the lab and undergo the conditioning phase.
(00:34:07):
And that meant for me three to four days of chemotherapy. And those days were uneventful. I was surprised. I thought none of the side effects that I had been told about was going to affect me. And after three days of chemotherapy, I had another four days just to rest with nothing happening in the hospital. And on July 2nd, 2019 is the day I received what I love to call my super sales. They were my edited cells. They came in four vows, Dr. Frank Goul. He pushed them real fast into the port that I had in my chest and it sped up my heart rate a little bit. But once he was done, I said, that’s it. And he said, that’s it, girl. And he gave me a high five and I cried that day.
(00:35:08):
My dad was wondering what was going on, why was I crying? He thought I was hurting, but I just believed that my life was going to change. But two weeks after receiving my new cells, I started having the side effects of the chemo. I lost my hair at first. It was the middle of the night and I slid my hair off my head like a hat. It all came off at once except for I’d say eight to 10 strands at the top. And I had a good laugh about that. The nurse coordinator, she cut off the rest and I sent the picture to my kids and they laughed. They said, you look like pop pop because my dad, he was bald. But after that it was no laughing matter. A few days after that, I got the mucositis, that’s the sores in my mouth, in my throat, and it was so painful, even swallowing my own saliva felt like swallowing glass.
(00:36:18):
So it was a tough experience that brought tears to my eyes because even though I’ve endured pain, I never had pain in that area, but I had my doctor and the nursing staff there to remind me that I’ve seen worse. So after about two and a half weeks, mucositis started to clear up and I was in the hospital a total of 30 days for that process. And I went to apartment near the hospital because I was still immunocompromised and still needed care. So if anything happened in the apartment, I would be close enough to get to the hospital. But thank God that was uneventful. I didn’t have any events, surprisingly enough. I was able to go home about two weeks early, then scheduled, and that day was a day that I can’t describe in words pulling up to my mom’s house. And my oldest son, Jamari, was in the neighbor’s yard and he did a double tape. And once he saw me in the back of that car, he sprinted. And when I got out, he met me with the biggest hug and he started to cry. I started to cry. My twins was jumping up and down at my mom house. They was like, mama’s outside. My mom’s like, no, she not. She ain’t coming home yet. But they rushed out into embrace my kids and keep the promise that I made to them when I left them at my mom house that I would come back,
Rachel Jones/NPF (00:38:00):
Girl, you got me now. Let me jump in and ask you to restate something that you said during your previous visit and that was began to pinch yourself because you felt like maybe waiting. Tell me about that.
Victoria Gray/Sickle Cell Advocate (00:38:21):
So it was about seven months after I had came home. I had finally tapered off all the pain medicines. I was done with my fentanyl patch, no more oxycodone, no more Dilaudid pills. And I go to bed one night just feeling regular for me. And I wake up this morning and the room is bright, it’s extra quiet in the house, and I sit on side of my bed and I don’t feel anything. I began to panic. I pinch my face, pinch my thighs because my thoughts was, oh my God, I’m dead. But I wasn’t convinced after even pinching myself. It took me calling my kids in the room. I needed to know that they can see me, they can feel me. And once I gave my children and embraced and sent them out, I said, oh my God, this thing worked. This is what normal feels like.
(00:39:30):
It was the first time in over 20 years that I woke up without the lower pain, the pain in my lower back and hips. I used to only shallow breathe because deep breathing hurt so bad. So I learned to live with shallow breaths. But this morning my breasts was going all the way down and out clear and without restriction, I didn’t have to remind myself to take deep breaths. It was something that I only thought I would see in heaven, but it was my reality. I began to test my limits and I just needed to know it was real. I went outside. I had a race with my two boys. I fell because I have no athletic experience, but it didn’t end with me having to get rushed off to the hospital and be away from my kids weeks, months at a time. It ended with laughter and how my boys chuckled about my phone flying out of my back pocket when I fell, I was able to be in the stands in my son’s football game, and to see my son turn around, see me in the stands and say, coach put me in my mama’s here, it made me so proud to be able to dress my daughter for her Christmas parade and watch her dance and to finally take a flight, my first flight ever in life, to watch DC to be by the side of my husband, Earl, who’s on mission deployed.
(00:41:13):
It was the first time that I was ever able to show up for him in that way. So it was the little things in life that brought me the most joy, just being able to be present for the most important people in my life.
Rachel Jones/NPF (00:41:31):
You have given us such an amount of inspiration and context about what it means to achieve a cure, to find an effective treatment. So I thank you for sharing that. We’ll come back to you, but I’m going to open up the questions here and ask Evans, Jonah, he has an important question for Il Evans. Are you there?
Evans Jona | Post On Sunday (00:42:01):
Yes, I’m here. Good afternoon. My name is Evans Jona from Zimbabwe, and I’ve got a question for IL here. So in Zimbabwe, in some Southern African countries, access to reliable information on rare diseases is extremely limited, and public awareness is also low. So as a seasoned science journalist, what strategies would you recommend for overcoming these challenges to ensure accurate reporting so as to raise awareness about rare conditions in such contexts? Thank you.
Bijal Trivedi/Journalist and Author (00:42:39):
One of the first things I think is important is to spend time with your patients. Don’t just rely on the web or information, spend time with your patients, hopefully when they are visiting their physicians, if they’re able to do so, and get information directly from the doctors and from the patients so that you get an accurate portrayal of what they’re going through and what the best treatments are and how accessible those treatments are. Then I would also use, when you are looking up websites for information on rare diseases, I would stick to ones like the NIH, the C-D-C-W-H-O, the websites. Those websites are very reliable sources of information, but also really focus on primary sources. Call up actual physicians that work on those diseases, talk to them, talk to the researchers who have maybe published a recent paper in those areas. When you talk to the primary sources, you can be fairly sure as long as these people are reliable and well-known professionals, that you’re getting the right information and you’re getting good information. I never take hearsay, I never take stories that I’ve heard from someone unless I can verify. So those are just a couple of basics that I think will really help you.
Evans Jona | Post On Sunday (00:44:20):
Thank you so much. Thank you so much.
Rachel Jones/NPF (00:44:22):
Sure. I’m going to turn now to Shailaja. Could you ask your question?
Shailaja Tiwale | Independent (00:44:31):
Hello? Yes, hello, Victoria. It’s really heartbreaking to listening to your story. So I want to ask that, as you earlier mentioned that discrimination hurts you more than the illness itself. So can you describe how people reacted during your recovery or maybe after recovery? And one more question that how did the community treat you that time? Maybe you are in a hospital but might have later, or your family members have shared these things. And the other thing is when the others saw you recovering from this disease with this CRISPR therapy, did the other patients and their families come to talk to you? So please share this experie as well.
Victoria Gray/Sickle Cell Advocate (00:45:21):
Well, I’ll start with the last one first because that’s the one I heard best after receiving CRISPR therapy. Yes. So many patients and their parents and families have reached out to me and still do to this day because they don’t just trust what they read or trust what another physician is telling them. They want to hear it directly from me, how my life was before, how I was treated and what the results were, and were there any side effects that’s not talked about. They really want to know the full experience. And did I feel like I was getting experimented on so many questions? So yes, I’ve spoken to so many patients, but so many patients move forward to sign up on the clinical trial after I did and after speaking to me and have had similar results and are very happy. So that brings me joy to know that suffering has ended for them and their family. And what was your question about my community?
Shailaja Tiwale | Independent (00:46:35):
It’s about, as you mentioned, that discrimination hurts you more so after recovery or during the recovery process. How did the community treat you at that time? It changed because you’re one of the recipient of that therapy. And the first one,
Victoria Gray/Sickle Cell Advocate (00:46:54):
Well, when I was in Nashville, I hadn’t experienced any discrimination from that team. So while I was going through that whole process, that team was great. Being there in Nashville seeking bone marrow transplant and meeting that new team that treated me like a human, made it easy for me to say yes to and experimental therapy like crispr.
(00:47:23):
So I didn’t have to deal with any discrimination with them. But as I came to Mississippi and I go to my hematologist and to the clinic that I used to visit on a regular basis, I’m welcomed. It is surprising, even at all of my other appointments with the pulmonologists, cardiologists, the whole communication is different because they seen my name and they know what I did. And people are talking about, and I’ll say this, I was scheduled to have a surgery that’s not related to sickle cell disease. And the anesthesiologist, he was looking at the chart and he saw sickle cell disease and he was like, why is she having surgery? Why are we even doing this? We shouldn’t. And when the surgeon came in and explained that I had underwent CRISPR and I was the first patient, his whole attitude changed. Oh, that’s why her hemoglobin looks so great.
(00:48:35):
And oh, it’s nice to meet you. So it is just the weirdest thing when I’m just Victoria and when I was in need and really needed the community, they didn’t show up for me. But now because my name’s in articles and I’ve done this thing, I get treated different. It angers me because I’m still the same person. I’m still a human being with a heart and a soul like everyone else with a family and my name or status or what I did should matter. I should have been treated with the same dignity and respect before. That’s a
Rachel Jones/NPF (00:49:21):
Powerful example of the impact of our work as journalists and how maybe you can address that. I’m going to ask Asako to ask her question. I think she has a question of Bijal.
Asako Takaguchi | Kyodo News (00:49:38):
Thank you, Victoria. Your story is so inspirational and thank you. Thank you for sharing it with us and also thank you to Vial. I feel like I have a lot to learn from you as a journalist. So actually my question is, yeah, actually my question is to both of you. So I wanted to know what do you think is the key when telling a rare disease story in a way that is compelling but not overly dramatic or tragedy focused? Because I am also, myself is a rare disease patient myself, but at the same time, I am also a journalist. So I’m always searching for the way how the effective way to tell a story about it because I want to feel the audience. This is also their story, not just a real disease story, but also it’s also their stories. That’s my goal. So this is my question.
Bijal Trivedi/Journalist and Author (00:50:50):
You want to go first? Okay, sure. Okay.
(00:50:54):
I’m sure Victoria is going to have her own opinion of what makes a good story, but for me it’s important that you are looking at the person from all directions. They’re not just a patient, they’re not a human with this condition, and that’s it. I mean, Victoria has aspirations. She had aspirations that I’m sure actually she’s going to achieve now that she’s got a cleaner bill of health. And I think it’s telling the whole story about someone. She’s someone’s daughter looking into her family, talking about her family life, her children who are just her pride and joy, the goals that she has. It’s not just focusing on Victoria has gone through terrible things, terrible things that you wouldn’t want to wish on anybody, but that’s not all she is. And I think that that is so key to telling a story about rare diseases is that you really look at the patient as a whole person and you don’t just treat them as an example of a condition and you find out their family background, what have they gone through, who are the people who have influenced them, what has been important to them, what has been really hurtful to them?
(00:52:18):
So that I think is tremendously important. And then I also think that putting a disease in its social context is important. It’s not just about a medical revolution. Yes, CRISPR is going to revolutionize medicine, but where does it fit in the continuum of medicine? How does history influence that medicine or hinder that medicine? And in the case of sickle cell, the medicine was basically put on hold. Nobody cared about this population. So I think to tell a good story, you have to weave in all the patient story, the history that’s going on where they live, the story of medicine at the time. And I think you have to weave them together to get a complete picture of just the patient’s life, what’s going on in medicine at the time, and particularly with sickle cell. How has history treated the patient population? So for me, it’s very intertwined. Storytelling.
Rachel Jones/NPF (00:53:32):
Victoria, do you feel people, journalists that you’ve encountered are getting the story right?
Victoria Gray/Sickle Cell Advocate (00:53:40):
Not all, but Bijal and Rob Stein and a few are because some just only want to highlight the good parts, but to tell the story, even if it’s tragic, you have to tell all of it, not just patient experience. We are human. So to highlight our entire human experience, I’m a wife, a mother, I’m a daughter. And like Bijal said, she said it so well. We are more than just our disease. And what I find the most compelling when I share my story on stage is the story about how my son and getting that call from his teacher with him fighting at school because he was trying to get kicked out. He wanted to be at home to save my life. If it came down to it, he thought I would die while he was at school. And that’s what gets people the most. That human experience, me being a mother and my son wanted me to live is something that people can relate to, even if they’re not parents, they have parents, and to imagining you not being able to go to school or do your day to day because the dread and fear of losing your parent is with you.
(00:55:14):
So I just echo everything visual said, but not all journalists, Rachel have gotten it right. They, oh, Victoria Gray first CRISPR recipient, and she’s doing this and doing that. But no backstory to how I got there. I’m celebrated now, but before I was invisible.
Rachel Jones/NPF (00:55:36):
Powerful. I’m going to give Nokukhanya the opportunity to ask you the last question from the journalists. Are you there? Hi,
Nokukhanya Musi – AimienohoInhlase | Centre of Investigative Journalism (00:55:46):
How are you? Victoria And hello to everyone as well. My name is Nokukhanya Musi . I’m from Eswatini, and we have a healthcare crisis. And I do apologize if I am asking a personal question, but I’m just curious to find out if the procedure was expensive for you and if you had any medical cover.
Victoria Gray/Sickle Cell Advocate (00:56:18):
Well, I joined in a clinical trial. It hadn’t been done humans before, so I didn’t have to pay because I was taking on all the risk. So, Being in a trial, you don’t have to pay,
Nokukhanya Musi – AimienohoInhlase | Centre of Investigative Journalism (00:56:34):
Right? I think you’re very brave and or very inspired by your story.
Victoria Gray/Sickle Cell Advocate (00:56:41):
Thank you so much.
Rachel Jones/NPF (00:56:46):
We have to unfortunately wrap up this conversation. Victoria, I want to mention something that the speakers in the prior session, one of the speakers mentioned, and that is he sort of compared the gene editing process that was involved in your treatment to that of what was involved in treating the baby KJ in Philadelphia. And he described them as being two different processes that yours might be a little bit more difficult to replicate because of it’s bone marrow, it’s whatever versus kjs. So all that brought to mind for me was you’re traveling the world now and nationally talking about the miracle that you received throughout this process. How are you communicating the message or balancing the message that yes, I am a recipient of this miracle, but yet it may not be available to many people. If it is, it may be too expensive. How do you package all of that and let people know the significance of your journey?
Victoria Gray/Sickle Cell Advocate (00:58:10):
So I share my personal journey and how bad the disease was before and how different it is now. And that usually gets the emotions going. But then I end with a call to action that I talk about the $2.2 million price that’s attached, that if had to do it commercially, I wouldn’t have been able to afford it. And I talk about the process with chemotherapy isolation. That’s something that places like India or Africa may not have the infrastructure for. So this meeting that I’m at today, the reason I’m in Italy, I’m with the organization called Act for Hope, and it brings together the manufacturers, the physicians, everyone who plays a part in this process. And we’ve been working on actions to make it more accessible, make it more scalable, bring down the cost and work on the procedure itself so patients like across the world can have access to this treatment.
(00:59:25):
So I talk about it all because it’s important that they know I’m one person, but there are still millions of people that’s suffering and still dying as we speak. And that’s not right. It’s all call to action to not just have a product that’s capable of performing the miracle that it performed in my life. It has no value if it’s just sitting on a shelf. It only have value if it’s being put to work and bringing cures and treatments to everyone who need it. And even looking into moving into more diseases to help in human suffering. We all have a right to to find the best joy and quality of life that we can on this earth. And I feel that God has placed us here to put the puzzle together. We have all we need to help one another, but are we going to step up
Rachel Jones/NPF (01:00:32):
And Bijal for journalists who may have challenges, they may not live near a university where this kind of research is going on. Please once again, stress the power of telling stories and how that can be important in this field.
Bijal Trivedi/Journalist and Author (01:00:50):
I think even if you can’t travel to where the patients are or where the physicians and research is going on, we’re all here on Zoom today. Zoom is in fact a fabulous tool for doing your reporting because you can zoom to people in the hospital, you can zoom to them in the lab and you can get those stories. You may be further away, but you can see the patients, you can see their lives, you can talk to everyone. And I think talking to enough scientists and patients, one patient is not representative of everyone. So it’s important to get a full picture. You can arrange chats with scientists in other countries with Zoom, and it’s a very respectful, wonderful tool for getting your reporting done. And so I think with Zoom or whatever interface you choose, it’s important to tell those stories and they get widely circulated. They’re very important, and they can be instrumental for triggering change, not only in the patient community, but these talks and these articles and these stories. They inspire the scientists who actually end up creating the treatments. And I think that’s one reason it’s so important for us to tell these stories as journalists.
Rachel Jones/NPF (01:02:19):
Well, Bijal Trivedi and Victoria Gray, I don’t have to tell you both. You are part of the NPF Rare Diseases Reporting Family, and we are so incredibly grateful to both of you for taking time out to meet with the fellows this year and to share advice, insight, and inspiration into this issue of reporting on rare diseases. So thank you both so much for joining us.
Victoria Gray/Sickle Cell Advocate (01:02:46):
Thank you for having me. Thanks for having me,
Rachel Jones/NPF (01:02:49):
And I will be in touch with both of you soon. Take care and Victoria, have fun this last time. I’ll travels. So.
