Sarita Edwards Transcript — Nov. 18, 2025
Rachel Jones/NPF (00:00):
For session three of day three, we’re joined by a woman whose journey towards advocacy and leadership in the rare disease realm began from the moment her son Elijah was diagnosed with Trisomy 18. It’s a genetic condition that is caused by having an extra copy of chromosome and it can lead to severe intellectual disability and major health problems. Sarita Edwards is the CEO and President of the E.We Foundation, a global healthcare advocacy organization that supports people living with rare disease and their families. She’s also the host of the Being Rare podcast, and she serves on executive boards and advisory councils within her home state of Alabama. Sarita, thank you so much for joining us today.
Sarita Edwards/E.WE Foundation (00:58):
Thank you. Thank you, Rachel, for having me. I’m going to go ahead and share my slides. All right, perfect. I hope everybody can see that pretty well.
(01:17):
Awesome. So thank you so much to Rachel and the National Press Foundation for the invitation to be a part of this conversation. I want to take the next several minutes to talk about my journey toward advocacy and leadership and how you can use patient stories to shape journalism and justice. So back in 2016, my husband Kareem and I learned that we were pregnant. This would be my sixth pregnancy, but my fifth child should we make it to turn around 22 weeks pregnant, we learned that our unborn child had a rare condition called Trisomy 18 or Edward Syndrome. We were told that he would die in utero, during delivery, or shortly after birth. Our son, Elijah, was born alive in March of 2017, but the response from our medical team was to enjoy our time because he would probably die soon. We were denied newborn screening because the neonatologist said it wasn’t worth the medical resources. We had to ask for basic newborn care. We were sent home post-delivery in hospice care where Elijah stayed for the first seven months of his life. I think it’s fair to say that this experience exposes healthcare gaps in terms of access, and it is what sparked my efforts toward advocacy and public policy.
(02:56):
Statistically, only five to 10% of infants born with Trisomy 18 will live past their first birthday, but with severe intellectual disabilities, I’ve learned that a single story can change how a clinician interprets a prognosis. It can shift a researcher’s focus towards lived experiences and how those experiences can contribute to data sets. And in journalism stories can transform public perception by shining a light on disparities in healthcare and society as a whole.
Sarita Edwards/E.WE Foundation (03:47):
So I worked in healthcare administration for over 20 years, but it was advocacy that pushed me into nonprofit leadership. For me that came from a place of necessity. If I’m completely honest with you, I did not consider myself an advocate. I was a mom who felt like I was the only person outside of my husband fighting for my son to live. After a few years of navigating systems that refused us care, I shifted my efforts and my career and established the E.We Foundation. We are a global healthcare advocacy network for families with rare diseases and for the professionals who serve them. My leadership is rooted in lived experience and Elijah has been the blueprint for the work that we do.
(04:38):
So what is your role in amplifying patient stories? As journalists, you can translate lived experience by balancing empathy and accuracy. When you tell patient stories, you are letting patients set the tone for their experiences and the way a story is told can influence whether people receive support, whether research gets funded and whether laws change. We know that stories can influence clinical decisions. Clinicians often make decisions with limited time and incomplete information. A patient’s story can fill in those gaps. Elijah’s care improved dramatically when providers understood him as a child and not as a diagnosis. When teams listened to our stories, our goals, our priorities, our lived reality, and included us in the decision making, that’s when decisions about Elijah’s care changed. That was not happening before. And a lot of those situations, storytelling is the most efficient way to share the truth about what families are going through and what they’re navigating in their day-to-day.
(05:59):
It can also bridge the divide between clinical expertise and lived experience, and that’s when care becomes more accurate, more humane and more equitable stories can also drive research. Research is often shaped by what scientists believe matters. And for a condition like trisomy 18 that has no treatment or cure and historically comes with limited life expectancy, the perceived viability of research has been a major barrier. However, patient stories can redirect those efforts. Families can share real world needs, everything from symptom burden to financial impacts, to social determinants and quality of life. When researchers understand the lived side of rare conditions, they can design better studies and acts more meaningful questions. Storytelling help patient communities advocate for funding. It helps with clinical trials and quality of life studies, and it brings attention to the science as it relates to lived experiences. For us, that’s important, especially for diagnoses that come with high mortality.
(07:22):
We know that stories can inform policy. Policy decisions become more humane when they’re centered around human stories. Our advocacy about newborn screening here in Alabama is an example of this. The act requires the state to expand newborn screening to include conditions approved on the federal rules, and within three years of their approval. This act is named after a 16-year-old named Zachary who has MPS one, a condition not screened through newborn screening when he was born. Additionally, my son Elijah was denied newborn screening, and although we received his diagnosis in utero, several of his co-occurring conditions could have potentially been identified had he been screened. Stories like these highlight the need for earlier diagnosis and better state level support. And as a journalist, you can play a critical role in producing the narratives that can influence lawmakers and their staffers.
(08:31):
So when we think about technology, AI and its relation to storytelling, they are transforming research, diagnostics, and journalism. Folks across the healthcare ecosystem can analyze huge dataset, identify disparities, detect trends and speed up investigation, but technology alone can’t interpret humanity. Patient stories keep the human narrative at the center of ever-changing intervention. When tick and storytelling work together, the result is better science, better reporting, and better health outcomes for medically complex individuals. A lot of patients are also using technology and AI to condense their medical records. This streamlines conversations, especially with new physicians and saves time at appointments. It also helps patients feel more confident in these discussion.
(09:36):
Equity for a lot of folks in the rare disease community is not just the buzzword. It is the difference between who receives care and who doesn’t. Communities of color, rural families, low income households, immigrants, we know their stories are often underrepresented in media and in research and access to care for these groups looks a lot different. As journalists, you have the ability to correct that imbalance. Equitable storytelling means that you’re seeking out voices that aren’t already amplified. Contextualizing systemic barriers and avoiding narratives that blame families for their circumstances, which more often than not have been shaped by policy or history.
(10:28):
One of the biggest lessons I’ve learned from advocacy is that storytelling is a form of leadership. It’s not performative, it’s not polished, it’s not always perfect, it’s not always comfortable, but it is Powerful stories can create the momentum that policies need to get across the finish line. They humanize the research and they help clinical teams understand what families actually need. Advocacy works well when leaders, and that includes all of you. Use your voice to illuminate the truth rather than distort it. Collaboration between patient communities and journalists can change public awareness and understanding at a local, state, national, and even global level.
(11:23):
So when you work with patient stories, I think it’s important to first build trust, give people room to speak without rushing them through their narratives. I think it’s important to make sure follow up stories don’t end at publication. Patients and caregivers value long-term relationships. If they make time for you, don’t gather their stories and then disappear. I think it’s important to center patient priorities and context. What matters most to them should guide how the story is framed. Too often our patients and caregivers asked to contribute only to find out later that all the endpoints were achieved except what they hope for. Finally, I think remember that stories can impact clinical care, research and policy outcomes. When you’re sharing stories, you’re framing how the world understands a entire patient community. So our journey with Elijah has taught me that justice doesn’t always look the same for everyone. For us, justice has been about dismantling a narrative that says, my son isn’t worth interventions. Justice has been about fighting for healthcare from a system that prioritize standard care models for a patient who needs individualized care.
Rachel Jones/NPF (13:00):
Can you unmute all of the speakers please? I mean all the participants? Yeah, so I have to do it individually. OK. Thank, I’m sorry, Sarita. Thank you.
Sarita Edwards/E.WE Foundation (13:20):
That’s OK. That’s OK. And Justice today is fighting for my son’s Medicaid that was terminated back in July without our knowledge. I’m overjoyed to share that today. Elijah is eight years old. He turned eight in March of this year. He’s in third grade in our public schools special education program. He does have more than 20 physicians on his medical team, but he’s alive. And to me that’s a story worth celebrating. So I’m really excited to be a part of this conversation. Thank you again to Rachel and the National Press Foundation, and I am happy to answer questions and just continue the dialogue. So Rachel, I’ll turn it back to you.
Rachel Jones/NPF (14:07):
I am going to take moderator’s privilege and ask you the first couple of questions because I do have the privilege of knowing you and having interacted with you and you’ve joined us for a couple of NPF events. So my very first question to you is to get you to restate the very powerful experience that your family had when it comes to the topic of race and access to care and equity along those lines, and that was the fact that you and your husband are highly educated professional people. They looked at Elijah and I’m assuming, looked at you two and said, go home, take him home to die. But tell us about the moment that you found out about another baby that was born with Trisomy. Background first on you and your family, and then tell us about that.
Sarita Edwards/E.WE Foundation (15:10):
Yeah. For us, the reality was when we got his diagnosis, even though I had worked in healthcare over 20 years, it was a diagnosis I had never heard of. We started to do our research. The healthcare space told us what the prognosis was and that’s what we should expect. We wanted to take it to term to which we did. I was induced at 39 weeks and they just waited. And when I say waited, I mean we saw them standing over Elijah and glancing at the clock because they believed that at any moment he would pass away. My husband had to ask them to clean him up. Elijah was born with bilateral cleft lipping palate. I had to ask them for formula because he could not nurse, and we overheard the nurses talking to themselves saying she wants to feed him. I mean, what do we do? Do we give her a formula? And all the stuff.
(16:21):
Elijah was probably a year old. He had spent seven months in hospice care to which that was the only option that they gave us. When I learned of another family, a white family who delivered at the same hospital and she delivered a year before we did, someone just connected us and said, you should hear her story. I reached out to her and she willingly spoke to me and she had a completely different experience. She shared that the hospital knew that she was a scientist. She said that her child not only was born with trisomy 18, but also her child had to be trached and intubated and all the things before they left the hospital, but she was sent home with early intervention. She was sent home with resources. And I think before that conversation with her, I thought our experience was because of the diagnosis and the diagnosis alone. But after the conversation with her is when I strongly began to consider that race played a part in how we were treated. She just had a completely different experience from us. I think my husband and I have five degrees between us, and we were treated as if we were ignorant, we were treated as if we weren’t understanding what was being communicated, and that wasn’t the case. We just wanted to know what all of the options were, and we were told this is the option, and that’s what they sent us away with.
Rachel Jones/NPF (18:12):
Often when I hear these stories, I have to try to envision what it must be like to be someone who does not have your level of education and does not have your level of access. If they treated you that way, how would they treat someone else? Those are the questions that journalists need to keep in mind as they’re telling these stories. It’s a very important point. My next question for you is about the mental health impact of caregiving, of supporting a family member with rare disease. We had speakers yesterday who talked about that, and one man in Nairobi lost four family members to motor neuron disease. But tell us about that aspect for you and your husband, his Elijah’s siblings. What has that been like in terms of keeping that in focus?
Sarita Edwards/E.WE Foundation (19:15):
Yeah, I think initially, I think initially I was navigating a lot of fear and I didn’t talk about it publicly. I didn’t share it with family. I just kind of kept it to myself, and I think it was a safety mechanism because talking about it out loud made it real. And I think just within myself, my brain wasn’t ready to accept that this is what we were going to be navigating. I started to share Elijah, as I call it, with his siblings, because we do have four other kids, and I was even withholding him from them, and I think I felt like I had to guard and protect him, but I think within myself, I was also keeping them safe from getting attached. And then if he died, having to deal with that and I realized that I was just doing a disservice to everybody.
(20:19):
I was doing a disservice to all of us, and I decided to just let him live. I mean, he was living, I was just afraid that he would die. And so I realized that that was a seed that the healthcare system placed that I could pluck up and not let grow. And rather than thinking about or being afraid that he would die, I woke up every morning expecting him to be alive. And so I had to change my own perspective. And I think that’s what shifted my thinking and my mental health. And then also I think it shifted how my children were being impacted by it. I knew in that moment that I was not at my best self. And so we did reach out to the counselors at our kids’ school. We told them what we were navigating, and we wanted a lot of hands on deck in case we missed something because this was an experience for them too.
(21:23):
But I recognized early that I wasn’t mom 100 in that moment. I was so focused on just Elijah that I knew that I could very easily miss my kids struggling with it. So mental health for us was really about tapping into the other resources around us, and that really started with the counselors at their school. Even my eldest kid at the time, he had just gone off to college and he was six hours away. And so we even reached out to, he was a football player, he was an athlete. We reached out to the coaches there and told them, we’ve shared this with him, but just be on the lookout if you notice any changes in his behavior. And so I think it was really just tapping into the community that we had. And that helped me, I think, open up to where I was able to talk about it more. And I think when my confidence changed about Elijah living, it was easier for me to navigate those conversations with other people. And so my mental health really started with changing my own perspective about what this diagnosis meant for my family. I had to realize that I was in charge of how it was going to navigate my life. And when I took charge of that, I think that’s when things just got better for me mentally. Yeah.
Rachel Jones/NPF (22:55):
I know you can’t fully speak for your husband, but the role of fathers in this caregiving and rare disease space, one of our speakers, in fact, on Friday, developed AI wearable technology to help monitor his daughter’s feeding cycles and eating and sleeping and everything. So I appreciate you mentioning AI and your presentation, but what about your husband’s mental health? Talk a little bit about his vulnerability.
Sarita Edwards/E.WE Foundation (23:29):
Yeah, I think him, what he has shared is it was important to him to be strong for me. He has shared that a lot of his difficulty was he couldn’t fix it for his wife, and that’s just the kind of man that he is. He wants me happy. He does not want me in pain. And for him, it was hard to see me struggle with this. And so I think that was the biggest thing. I think his faith was grounded because I pulled a lot of my faith from him. If he didn’t look worried, I tried to pull off of that. But he has shared that the most difficult for him was not being able to fix it. I think as a man, it was the one thing that he knew he couldn’t, but if he could, he would have in an instant. And so yeah. Yeah,
Rachel Jones/NPF (24:50):
There is so much love in your family, and I see that tear that’s rolling down your face, that clearly is one of the things that pulled you through. I want to ask one more question, then I’m going to open it up to the journalists, and that is this role, it’s one thing to be a professional and expert in your field and confident or whatever, but when it came to you not only caring for Elijah, caring for your family, but also maybe speaking in front of policymakers and going to conferences and telling his story, what was that process like for you? I mean, you’ve got so much on your plate.
Sarita Edwards/E.WE Foundation (25:30):
I started sharing Elijah’s story, and we started the foundation kind of all at the same time. And I think the first time I shared this story, I met a lady here in the community, and it was rare across America. It was an opportunity to sit down with legislators in district, and she invited me to be a part of it. I had never heard of it. And she said, you tell them about your experience. And at the time there was legislation being presented around newborn screening appropriations. And because Elijah did not receive newborn screening, she thought that was an impactful story to share. And so I did, and after that meeting with the congressman, his staffer reached out to me and she said that my story really touched her. She talked about her brother who also had disability, and we just connected. And I think that opened up the idea for me to share Elijah more publicly because I realized that I tapped into someone else’s vulnerability.
(26:48):
And I think now I’m just a huge advocate for making sure people know what’s happening and the reality of what that means for families like mine, people will say, newborn screening gets a mandate. All babies get it. And I just chime in and say what the reality is that actually is not the case. And I share my story. People talk about everything that’s going on with Medicaid right now. Oh, well, if you have a disability, you don’t have to worry about that and all the things. And I’m able to chime in and say, that’s not the case. I’m fighting for my son’s Medicaid to be reinstated right now. And so I think for me, it’s just been very important to make sure I’m in spaces to tell the truth of what’s happening, how it truly does impact families. And I think just going to conferences and all the places, a lot of those spaces, they found me and it was a door that opened up and I walked in, and I try my best to stay in those rooms. So stories like mine aren’t lost and a lot of the stories that are also being told. So
Rachel Jones/NPF (28:10):
I’m going to allow Evans Jona from Zimbabwe to ask his question because I think it’s a good follow up on this part of the conversation about helping other people, helping empower other people. Evans, go ahead, please.
Evans Jona | Post On Sunday (28:27):
Thank you so much, Sarita, for sharing Elijah’s story. It’s really much, pretty much inspiring and it drew quite a lot of lessons that we should also observe here in the global south in Zimbabwe to be particular. Basically. I’ve got one or two questions. The first one is how you empower other parents and caregivers to become advocates for their children, particularly in communities where resources are limited. How do you empower our parents and caregivers to become such advocates like yourself? And the second question is that, in your view, what makes a parent led advocacy initiative effective in influencing policy and healthcare services? Thank you so much, Sarita.
Sarita Edwards/E.WE Foundation (29:14):
Thank you. So for the first question, I would say when it comes to being an advocate for me, I try to help parents first identify what their goals are. If it’s just wanting to share your story, I think that that’s very important. I try to help guide what that looks like. And so if you are talking with a policymaker, for example, I encourage parents to use the portion of their story that actually aligns with the policy that you’re trying to move forward. A lot of times it’s easy to get caught up on our eight year journey, but when I’m sitting in front of a lawmaker or a legislator, I don’t always have eight years worth of time. And so one thing that I try to do, and I do mentor advocates too, try to help them pull out the pieces of their story that match that.
(30:20):
If they’re trying to advocate for better help in terms of we’re not getting the resources that we want from the healthcare space, or we’re not getting the services that we want from our school system if their children are able to go to school, I think for me it really kind of starts with, so what services are they offering? What services do you think they need? Have you asked for those services? Have they told you no? Why have they told you no? And then that’s kind of how we start like the framework, because I don’t want to ever go into a conversation. If a parent invites me to be a part of those conversations, I don’t want to go in assuming anything. So I try to get as much information as possible from the parent ahead of time. One huge thing that I always tell parents is don’t miss opportunities dwelling on what did not happen.
(31:15):
I think there’s a place to talk about that, but when you are trying to advocate for something you are not getting, don’t spend a lot of time talking about past stuff, let’s talk about what’s what the priority is right now. And so I think that there’s a framework to advocacy that we can teach and help people do it better and do it well. And it starts with really just talking to the family to see what their goals are. I think the second question in terms of, I’m sorry, you said, how did I get to, can you repeat the second question for me? I got lost in my thought.
Evans Jona | Post On Sunday (31:55):
Alright. The second question was, in your view, what makes a current LED advocacy initiative effective in influencing policy and healthcare services?
Sarita Edwards/E.WE Foundation (32:06):
OK, so what makes an organization influential? For me, I think it has been critical to be visible. I am very open to collaboration. I think a lot of my partnerships have opened up doors for me as an individual, but also it is brought funding to my organization. It’s brought other collaboration and partnerships to my organization. I think for me, it’s just important to talk about the work that you’re doing. When I sit down in front of people, I make sure to talk about Elijah, but I also remind people that I’m also a professional. I also remind people of the work that we’re doing at the E.We Foundation. And so for me, I think I take every opportunity to keep everything we’re doing at the forefront. And so I don’t let people put me in one singular box. So I’m Elijah’s mom and I’m a caregiver, but I’m also this and I’m also this and we’re doing these things. And so I think it’s just important to tap into all the elements of who you are and not be afraid to remind people of that.
Rachel Jones/NPF (33:35):
Alex Ababio has some really good questions. Alex, are you there?
Alex Ababio | Ghanaian Watch (33:42):
OK. Thank you very much for this opportunity. I want to answer it these question, during your presentation, you talked a lot about power of storytelling. Can you tell us more about a moment when a journalist work truly made a difference for you and your son’s journey? Try Somy. 18. And how did the story impact your life? And the second question that I want to ask about it, was there ever a time in your son’s classing 18 journey when you felt your hope sleeping maybe while searching for treatment or support? And if so, what helped you keep going during that difficult period? Thank you.
Sarita Edwards/E.WE Foundation (34:32):
Thank you. Oh, see, you got me thinking about the second question. OK, so the first question, the power of storytelling and how it’s helped. I would say when we had the opportunity to sit down with our pediatrician at the time, our pediatrician who started with us on the journey has since retired. But when we had the opportunity to share what our wishes were when we first started with Elijah, we were just accepting of everything that was being given. This is what you need, this is what you do. And it was kind of OK, I think the moment we shared this is what he’s doing at home.
(35:31):
So we would like to explore something different than what originally given. And I think that moment is when our pediatrician said, OK, so let’s take a look at some things. And we started to shift Elijah’s care. I think too, I started treating Elijah. He was a patient that I would help in the hospital and I started coordinating his care. And the hospice team said, you’re going to have to stop doing that, or we won’t be able to recertify his hospice. Well, we never asked for hospice. And so I think for us, it was starting to manage his care ourselves because we weren’t getting what we thought he needed. And at the time, nobody was listening to us. But then when we started having those conversations, we had to get forceful. We, we’ve had to change doctors. We know everybody can’t do that, but we’ve had to change doctors and have that conversation again with a new physician.
(36:42):
And we did that until we found a medical champion who started helping us navigate and manage his care. And so I think the turning point was when I found my own voice and decided that if I didn’t like what they were telling me, I was going to speak up and say that. And that’s when things truly started to shift. I think your second question about hope, I think I lost my hope several times over the course of the journey getting the diagnosis. When I was pregnant with Elijah and I was at the halfway mark, I still had 18 weeks of pregnancy to go, and I had to finish out my pregnancy with this knowledge. And so as hopeful as I tried to stay, it was difficult because every doctor’s appointment was pulling the scalp off of a wound. I hated going to the doctor because I knew that they were going to give me that same conversation.
(37:45):
I lost my hope a lot of times. But we are a family of faith, and we believed that if we just remain steadfast, that God’s will would be done. And we drew a lot of our strength from that truth. And I drew a lot of my strength from my husband when I didn’t feel so hopeful. I just kind of watched him and watched how he moved and listened to the stuff that he said because some days all I had was my thoughts. The last few weeks of my pregnancy, I was on bed rest and I spent several weeks planning my son’s funeral because I believed that that’s where I was. And so my hope was in just making it to the end. And when I made it to the end, my hope was him being born alive. And then when he was born alive, my hope was us making it out of hospice. And so my hope was ever changing because Elijah continued to live. And so every day I’m just hopeful and grateful for another day with him, and that’s where I keep my hope and my savior.
Rachel Jones/NPF (39:04):
As a quick follow up, I want to sort of add on to Alex’s query. And that is, has there been a particular story or a particular interaction with a journalist that really worked well or that you think they got it right and Contrarily, has there been somebody who got it wrong?
Sarita Edwards/E.WE Foundation (39:33):
I think for me, for the most part, every journalist has gotten it right for me. I have had times where I felt like they were trying to trap me into saying something, but I’m never one to, my purpose is not to bash or talk trash about the healthcare space that we were in because I do think it’s a great institution, but I’m not afraid to say the care that we received was very subpar. And I think for me, I’m just very open and honest and as long as the journalists repeats exactly what I say and they capture exactly what I say, I have been pleased with the outcomes of it because I’m not afraid to say what needs to be said. I’m OK with looking like the bad guy because this is our truth.
(40:50):
Every time that I’ve sat down with a reporter, it has been a good interaction. Their goals were good. And if I felt like they were trying to get me to say something, I said that to them. They’re no different than the healthcare space or anybody else. I don’t have a problem saying, so what are you asking? What are you trying to get me to say? So I’m not going to say that. And so all of my interactions I would say, have been pleasant just because I’m not afraid to point out what I feel like someone may or may not be trying to do. I want them to give me the clarity. And if they say, well, what I was trying to ask was this, this, this, and this, OK, well then ask me that. Don’t just tiptoe around it because I’m an open book. I’m going to give it to you real. So yeah, I’ve had good interaction and I will say the one time that I felt like that journalist was trying to pull something out of me, it wasn’t directly related to my journey with Elijah. It was a completely different story, but it was an experience that I remember because I feel like they were trying to get me to say something. Yeah.
Rachel Jones/NPF (42:07):
Well, so she mentioned his name so much and I hope to meet him someday, but why don’t, at this point you tell us about Elijah, how he’s doing, what his milestones are, how are things going?
Sarita Edwards/E.WE Foundation (42:21):
Yeah, Elijah is doing really, really well. He is at school right now. He is trialing a communications device. Our school’s special education program is fantastic. They have been so helpful. They started capturing data and they said, we think he’s trying to communicate, and they were just using an iPad, and so they pulled a lot of data together. We submitted it to our insurance company and they approved us for a trial. And he is using this device to communicate, and he uses his eyes because he doesn’t have the hand mobility to push the buttons. And so it’s an eye gaze device. It is fascinating what he can get it to say. I mean, we programmed the words, but he’s controlling the voice from the device with his eyes. So he’s doing really, really well with that. We do have a massive healthcare team, but we only see one of our 23, 24 specialists more than once a year. He has transitioned to annual visits with everybody. We just shifted from every six months to every year with one of the last ones. So we’re really excited about that. It’s good to not have to go, especially because we have to commute two hours one way, and so to only have to go once a year is fantastic. He’s learning to ride a trike.
(44:03):
He’s headed to Disney World. He was just approved for Make-A-Wish. One of our providers submitted him for the Make-A-Wish program and we’re headed to Disney to celebrate that. I mean, he’s doing really, really good. If you look up this diagnosis, you would not expect that he has and you wouldn’t suspect that he has it. He is very much defying the odds of what this condition is supposed to do, which is why we talk about it.
Rachel Jones/NPF (44:35):
Wonderful story. I want to ask Elijah, she has a question for you. Are you there? Maybe she’s not there. She wondered about any challenges or obstacles that your foundation or your network of folks in Alabama are dealing with? What are some of those things?
Sarita Edwards/E.WE Foundation (45:10):
Yeah, challenges within the organization. I would think one of the biggest challenges is probably funding. A lot of the work we do is just advocacy and just training and education for a nonprofit organization, a patient advocacy organization, funding is always difficult, but especially for an organization that the primary disease affiliation, there’s no treatment, there’s no cure. So you really don’t have a lot of industry or pharma that you can tap into because a lot of times they want to be connected to organizations that support the medications that they put out. And so we don’t have that.
(46:01):
I would say that’s probably one of the biggest challenges. I think too, maybe a challenge is just tapping into the research landscape. I’m in the final stages, the final few months of my doctorate, and one thing that I have seen is if you’re not looking for a treatment or you’re not trying to cross over into clinical trials, there’s not a lot of conversation for research for you. And for me, I think that’s a disparity within itself because we can still explore what quality of life can look like for these children. We can still explore commonalities in terms of milestones, and this condition affects every single organ in the body. That’s something that can be explored. And so that’s a space that’s been really difficult to cross over into, but I’m hopeful that we’ll get there. But outside of those things, I think we make it work.
(47:16):
We’re making sure the education is out there, we’re making sure the awareness is out there, we’re making sure the conversations are happening, and we’re doing that with the financial infrastructure we have. We are grateful for the donations that we receive and the grants that we received, but the competition can get really, really stiff because of what this condition does to the body. And so it’s a lot of figuring out if we’re even eligible to apply for a lot of the things that we find. So I would for sure say funding and just tapping over into what research can look like for a condition like this.
Rachel Jones/NPF (48:00):
Have a question from journalists and of France, and you’re on mute. OK.
Anne deLoisy | Epsiloon (48:10):
Yes. OK. Hello, Sarita. I have just a question. Are you still in contact with the white family that as a kid with the same disease and yours, and are there still differences between the treatment your kid received and their kid receive? And how is their kid? Do you have news from them?
Sarita Edwards/E.WE Foundation (48:39):
It’s been several years since I spoke with her. The time that we spoke, her daughter was still trached. Her daughter had a G-tube. Elijah does not have either of those. She was home and receiving early intervention services, but that was so many years ago. So I honestly don’t know anything past that conversation. Yeah, many, many years ago.
Rachel Jones/NPF (49:17):
At this point, tell us about what happened with Elijah’s Medicaid coverage. What happened with that?
Sarita Edwards/E.WE Foundation (49:26):
That’s a really good question. We received paperwork in the mail that said it needed to be completed and turned back in, or he would lose coverage. So I completed the information. It was an option to mail it back in or take it to the local office. I decided to take it to the local office hand, dropped it off to the people there, and we waited. A few weeks after that, we received another packet of information in the mail that said it needed to be completed or he would lose his coverage. Lemme stop you
Rachel Jones/NPF (50:02):
Here and ask you for the international journalists. Tell them a little bit about the Medicaid program and what it does.
Sarita Edwards/E.WE Foundation (50:09):
OK, so Medicaid specifically for Elijah, Medicaid is a state funded program. There is some federal funding as well, but it’s a state funded program funded that is available for children with chronic critical illnesses and disability. That’s what we use it for. There are other components to the Medicaid program, but specifically for Elijah, we were using the Chronicle critical illness disability aspect of it. And so when that second packet of information came in the mail, I actually had a meeting with our in-district congressman, and so I mentioned it at that appointment and just happened to say, Hey, I’m getting real worried about this. I keep getting paperwork about Medicaid. And that office said to me that you don’t have anything to worry about. They’re just kind of tracking who’s covered and why to just make sure families like yours have access to Medicaid and people who don’t need it aren’t pulling those resources.
(51:25):
So I’m thinking, OK, great. I got a second packet of information. They said, just fill it out, whatever you get, fill it out. Make sure you turn it in on time. So I did. I filled out the second set of information, hand delivered it again, and we waited a couple of weeks after. Then I got a phone call and it was the local Medicaid office, and they said, Hey, we’re calling about Elijah’s Medicaid. I was like, OK. She asked me if we had primary private insurance. I told her, yes, Medicaid was our secondary, and she says that we were ineligible for Medicaid. And I told her, well, my son has a disability. He has a chronic terminal illness. We’ve had Medicaid since he was born. How are we ineligible? And she says, well, I’m not not sure, but the system, well actually his Medicaid ended in July.
(52:26):
I spoke with her. We had this conversation August 15th, that was exactly how she said it to me. And I said, wait a minute. She said, wait, let me double check. She said, yeah, his Medicaid was terminated July 31st. And I told her, I was like, do you know why? And she said, well, I don’t see anything in the system. And I said, well, I haven’t received anything from Medicaid. She said that she couldn’t find anything in her system. She gave me a few phone numbers to call. I immediately hung up with her, started making phone calls, but by this time it was four 30 on a Friday. I went to everybody’s voicemails. I just left messages, started making phone calls on Monday morning and everybody was blaming someone else. And they just basically said that for the last four and a half of the eight years that he was covered, he was on the wrong Medicaid program and they terminated it. That’s the only information that we’ve received that he was covered by the wrong program. How that happened, I don’t know.
(53:38):
We’ve not applied for anything different to our knowledge. It’s been the same program since the very beginning. I told this was our first time doing paperwork. A social worker helped us the very first time. I mean, all we had is what they told us. And so I tapped into every resource that I had, even the congress office, all the things, and nobody to date has been able to help us. We eventually just started a new application, which is what they recommended, and we have applied for Medicaid as if he’s never had it, and we’re just waiting.
Rachel Jones/NPF (54:22):
Another example of the persistence and devotion and dedication parents need to have on behalf of their children with the rare disease. We are unfortunately near the end of our time. I literally could listen to you all day, Sarita, but I want to let Robert of Kenya. I have the last question because I think it’s important for many of the journalists on this call. Robert, are you there? OK. He may be having, he says, in places like Kenya where doctors are very few and their time is limited, how can we use patient stories to make sure that everyone, especially poor families in rural areas receive this type of understanding and humane care? What would you say?
Sarita Edwards/E.WE Foundation (55:26):
I think you could share patient stories and the difficulty that comes with living in a rural area or a poor area. I think you have to first identify that that is a barrier for some families. I think a story can highlight that. I think talking to a family who lived that every day would be impactful. I think you can also cross-reference that to someone who that’s not their experience. Someone who, they live in a highly populated area where they have a choice of physicians even for a rare diagnosis and just show the disparity of care there. I think you have to help people see that there’s a need in a community, and a lot of people can’t leave that community to go somewhere else. And so I think a patient story can help people want to get to that community because the people there can’t leave it. The reality for a lot of families is we are stuck where we are. And so if I’m a family that can’t find the resources, I need the resources to find me. And I think that starts with sharing stories and letting people know that resources in those areas are needed. Somebody somewhere should be willing to go to those places. So the people in those places don’t have to figure out how to get to where the resources are.
Rachel Jones/NPF (57:13):
Sarita, your story, Elijah’s story and your leadership and advocacy is incredibly powerful. Thank you. And you at the National Press Foundation are so grateful for your ongoing support of us and of training for journalists on this particular topic. So I want to take this opportunity now to extend our deepest thanks and gratitude to you for joining us. And I also want to ask you to make sure to give Elijah a hug from all of us. I think all of the journalists on this call would join me in saying that’s what we want you to do. So take I’ll You. Thank
Sarita Edwards/E.WE Foundation (57:54):
You. Thank you so much. I appreciate all of you. Thank you.
Rachel Jones/NPF (57:58):
I’ll be in touch. Take care. OK,
Sarita Edwards/E.WE Foundation (58:00):
Thanks. Bye.
