Parents Speak Out: Ramaswamy's Pharma Company Charged $3M per Treatment for Rare Childhood Disease

Ohio Republican gubernatorial candidate Vivek Ramaswamy sat on the board of directors of a pharmaceutical company that held proprietary control over a novel treatment for a rare childhood disease that priced out nearly all families who needed the treatment by charging $3 million. Now, two parents have come forward to tell the stories of what their children who needed the treatment have gone through to MeidasTouch.

From 2014-2021, Ramaswamy was the CEO of Roivant Sciences, which made him a billionaire. Under that umbrella, in 2016 he founded biopharmaceutical company Enzyvant.

In 2016, an FDA-approved therapy for thymus transplants was licensed to Enzyvant from Duke University. Enzyvant then applied for FDA approval to develop a treatment for a condition called pediatric congenital athymia. The treatment called RETHYMIC was the only treatment of its kind in the United States for children born without a functioning thymus.

These children do not develop functioning immune cells, rendering common childhood diseases like colds and RSV life-threatening. Children born with pediatric congenital ahtymia are almost certain to die by age 2.

According to a press release from Sumitoro Pharma, "RETHYMIC (allogeneic processed thymus tissue-agdc) is a novel one-time tissue-based regenerative therapy used for immune reconstitution in pediatric patients with congenital athymia. RETHYMIC is engineered human thymus tissue designed to regenerate the thymic function children with congenital athymia are missing and does not require donor-recipient matching…RETHYMIC is the first and only treatment approved by the FDA for immune reconstitution in pediatric patients with congenital athymia."

By 2019, Ramaswamy had sold Enzyvant to Sumitoro Pharma, who quickly placed Enzyvant and RETHYMIC under the control of its subsidiary Sumitovant Biopharma. Ramaswamy quickly became a member of Sumitovant Biopharma's board of directors so he could keep control of RETHYMIC. RETHYMIC was approved by the FDA in October of 2021.

While Ramaswamy sat on their board, Sumitovant Biopharma set the price of RETHYMIC at a staggering $2.7 million.To date, it remains the only available treatment for pediatric congenital ahtymia in the United States.

Ramaswamy said RETHYMIC was the medicine he was "most proud of" from his time as a pharmaceutical CEO.

"I developed a number of medicines," a June 2023 article in The New York Times quoted Ramaswamy. "The one I'm most proud of is a therapy for kids, 40 of them a year, born with a genetic condition who, without treatment, die by the age of 3."

Proud of it or not, the price point for RETHYMIC puts it out of reach for the vast majority of American families who desperately need access to it to keep their children alive.

RETHYMIC was listed as the 7th most expensive drug in the United States in 2024. The total cost of RETHYMIC to patients, after spending an average of 150.6 Days in the hospital and three years of supportive care, was $5.5 million.

The only other treatment in the world for pediatric congenital athymia is provided in the United Kingdom at the Great Ormond Street Hospital for Children in London. The UK version of the treatment is "broadly similar" and shares essentially the same procedures as Ramaswamy's treatment, but costs $2 million less.

"Mr. Ramaswamy's pitch that his business model would lead to affordable drug prices has not come to pass," The New York Times article continued. "One example is the product for which he has said he is most proud, a one-time implant for children with a rare and devastating immune ailment. When Enzyvant, the Roivant spinoff company by then controlled by Sumitomo, won regulatory approval in 2021, it set a sticker price of $2.7 million."

Two mothers whose families are directly impacted by the greed of Ramaswamy and his company are Chelsy Nolasco, and Jessica Discepoli.Both women sat down for an exclusive interview with MeidasTouch to tell their stories about raising children with pediatric congenital athymia in a country where the only available treatment is priced solely for billionaires.

"My son Luca was diagnosed with congenital athymia when he was just 5 days old," Jessica says. "It is an extraordinarily rare, life-threatening condition in which a child is born without a functioning thymus, leaving them unable to develop the T cells necessary to fight infections. We went from celebrating the birth of our baby to learning that his immune system couldn't protect him from the world around him."

"Luca spent his first year of life in the hospital. He endured months on a ventilator, a tracheostomy, countless procedures, and medical complications that no child should ever have to experience. Our lives became a world of isolation, hospital rooms, medical equipment, and constant fear. Things most parents never think twice about, like taking their baby to the grocery store or letting someone hold them, were potentially life-threatening for our son."

Jessica's son Luca was lucky enough to receive RETHYMIC at 6-months-old at Duke.

"On July 12, 2022, at just six months old, Luca received a thymus tissue transplant at Duke University. He was the 103rd child in the United States to receive a thymus transplant and the 3rd to receive RETHYMIC following FDA approval."

"That treatment changed the trajectory of his life. It didn't erase his medical complexities or magically make everything better. We still navigate immune deficiencies, therapies, medications, and the lasting effects of everything his little body has endured. But it gave him something we once weren't sure he would have: a future."

"Today, Luca is 4-years-old. He goes to preschool, plays with other children, loves cars, and experiences pieces of childhood we once only dreamed about. I have watched him go from a medically fragile infant fighting to survive, to a little boy who is finally getting the opportunity to live."

"I founded Luca Rising Foundation because I know what it feels like to be the parent on the other side of that diagnosis. I know the desperation of searching for answers, the fear of losing your child, and the incredible privilege of watching a treatment give them a chance at life."

"For our family, RETHYMIC isn't simply a pharmaceutical product with a price tag. It is the reason I get to watch my son grow up."

For Chelsy and her son Gabe, who wasn't able to get a transplant until much later, life is a day-in-day-out nightmare.

Watch Chelsy's story here, aired exclusively on MeidasTouch for the first time:

"I'm Chelsy Nolasco and I have 5 kids. But I'm going to tell you about my 4th. Much like Luca, he was confirmed born without an immune system. And through that, we went into isolation and PPE and all of that. Gabriel did not get transplanted until he was 4-years-old."

"He stayed clean for multiple years. He did not catch his first virus until he was 3-years-old. The first time he caught a virus, he caught Rhino and his airways shut off. And we had to call an ambulance because he was…I mean, he was choking. His airways were completely closed off."

"The second virus that he caught was Norovirus, which for me and you, that's a 24-hour stomach bug. No big deal. It has been 4 years. My son still tests positive for Noro. Because of Noro, he had to have his third open heart surgery. It stressed his body out so much."

"He lost 10% of his weight. He was down to 19 pounds at 3-years-old and he had to be put on TPN and lipids, which just means his gut was completely shut down. And he had to get IV nutrition, which to this day, he still is on."

"And so fast forward a little bit more. Gabriel had his first seizure and we found out that he had a virus called HHV6. So we're going into a transplant with all of this dirty viruses."

"When he was first born, Duke was trying to get approval from the FDA. So we're on a list and we're waiting. We were one of those that were greatly impacted by the delay. So instead of getting transplanted at 6-months-old, like Jessica and Luca, which they have an incredible, amazing story, and I love that he got to get there early."

"Unfortunately, that wasn't my son's story. 4-years-old, multiple viruses, he goes in. And we know now, because of the HHV6 virus it infiltrated his thymic tissue and it failed."

"So now I have a 7-year-old with under 50 T cells. We're still in isolation 7 years later."

For Chelsy, and so many other families like hers, the isolation of COVID-19 has never ended.They are still disinfecting their mail, watching who comes and goes from their home, and masking when they go outside. Now, they've had to send their older son away just so he can have a life. He's a teenager who's had to live his formative years in lock down, because for his brother's safety he can't come and go.

"And for us, that has looked like my oldest son having to move out of the house because he's a junior in high school and we couldn't let him continue living in isolation."

"What that's looked like is 7 years of no Christmases, no family time without isolation and quarantine. That's 7 years that none of my children have been able to attend school or big functions with other kids or living life like a normal child would do. And I don't know if you're a parent or not, but it is definitely not the childhood that I ever envisioned for my children."

"And now here we are, 7 years later, we have a failed transplant, and RETHYMIC is technically still an option. But we have been fighting for months to reach it again. Gabriel is in line to be the first kid in the United states with a second transplant."

"But unfortunately, I don't have almost $3 million in my back pocket to pay for this to happen."

"It should be a little difficult. I mean, I get it, but this is barbaric. It's inhumane what families are having to go through in order to touch a treatment that is the only treatment and the only chance for our kids to survive."

"It is infuriating to have to sit here and know that there's something out there that can help my child, but I just can't touch it because I'm not a billionaire."

While families like Chelsy's suffer, Ramaswamy's company has been swimming in cash on their proprietary hold on the novel treatment. From 2021 to 2025, Sumitomo made $167 million on RETHYMIC sales.For historical context, Jonas Salk refused to patent his vaccine for polio. He didn't make a cent off it while saving millions of lives.

"I believe that when someone holds a leadership position in a company making decisions about the price of a life-saving treatment, they should be willing to answer difficult questions about those decisions," Jessica told MeidasTouch.

When I asked what they would tell Ramaswamy about what they've had to go through, something interesting was revealed: Jessica has met with Ramaswamy. In fact, his wife Apoorva has mentioned their family on the campaign trail.

The Ramaswamy's tried to use Luca as a prop for their failing campaign for Governor. Unfortunately for them his mother was listening, and as an Ohio resident she isn't planning on voting for Vivek.

"Last weekend, I got to play Hot Wheels with this 4-year-old little boy," Apoorva Ramaswamy said at a campaign event YESTERDAY about Luca. "He was so cute. He reminded me of my older son. He has a genetic condition where he had no immune system. When I was in med school, we learned that those children didn't really live past the age of two because they got infections and they got diseases and they, they just couldn't live a normal life because they had to stay away from everyone."

"Well, because of a one time therapy that this kid got at 6-months-old, he was able to play Hot Wheels with me," Apoorva continued. "He was out at a restaurant. He was joking around with people, and he was the liveliest little person and it was so amazing. I could not believe how proud I was."

Watch that clip here:

"I don't think it's responsible to place the entirety of a complicated pharmaceutical pricing system on one individual," Jessica continues."There are regulatory costs, manufacturing challenges, investors, insurers, and numerous other factors involved. But I also don't believe those complexities absolve corporate leadership of accountability."

"For me, this isn't about assigning blame for political purposes. It's about understanding how a treatment developed to save an extraordinarily small population of critically ill children arrived at a multimillion-dollar price point, and whether the people making those decisions adequately considered the families whose lives depended on it."

"I think we both question Sumitomo of why does it cost as much, and just gotten a run around because they can't answer it and because we're probably asking people that genuinely, it's not their job to know," Chelsy says.

"As Luca's mother, I am grateful that the treatment was available when he needed it," Jessica says. "As the founder of a foundation supporting other families facing this diagnosis, I have to ask what happens to the children whose families encounter barriers to that same treatment."

"Those are fair questions, regardless of who sits on the board or what political office they may seek. I think we can recognize someone's role in bringing a groundbreaking therapy to market while still holding them accountable for the decisions surrounding its accessibility."

"We are losing children, and to consider that it is because of a price point is abhorrent," Jessica says.

"Meet Luca. Meet the children who have survived because of thymus transplantation, the families still waiting for treatment, and the parents who have buried their children because this disease is unforgiving."

"I think, you know, that price has quite literally put a price point on our children's heads," Chelsy says. "And as parents, having literally a price point on your kid's head, it feels disgusting and it's inhumane what families are having to go through during the wait in the process. The disease itself is horrific enough."

"I would want [Vivek] to understand what these decisions look like outside a boardroom or a political conversation. They look like a mother sitting beside a hospital bed, watching a ventilator breathe for her baby. They look like parents spending months in isolation, terrified that a common infection could take their child's life. They look like families who would give absolutely anything for one more birthday, one more Christmas, or one more ordinary afternoon with their child."

"I recognize the importance of medical innovation. My son is living proof of what decades of scientific research can accomplish. I also recognize that healthcare systems need to be financially sustainable. But sustainability cannot come at the expense of the children who depend on those systems to survive."

"My son is not a line item on a balance sheet. He is a little boy who loves cars, goes to preschool, and has an entire life ahead of him because people dedicated their careers to giving children like him a chance."

"I want every child born with congenital athymia to have that same opportunity."

"And I believe the people making decisions about healthcare, whether in corporate boardrooms or public office, have a responsibility to remember exactly whose lives are affected."

"My husband and I have planned our son's funeral. More than once," Chelsy says. "We have watched him almost die more times than I can count. I have seen him be a full code right in front of my eyes. Every single time we do anything with him it is a risk. At some point we had to make a choice to let him live and make memories."

"If I have to prematurely bury my son I want to know he had a great life regardless of a diagnosis. So sometimes we take a chance. We wear masks, we sanitize we control what we can so he can have memories. Congenital athymia changed not only Gabe's childhood but all our children's."

"We know ultimately we can do everything right and still lose our child. That alone changes our perspective on life and how we live. We have seen too many kids lost to congenital athymia. We speak out not just for our children, but all the families who didn't get a chance because this disease took their children before they even had a chance."

This story was originally published by MeidasTouch on Nov 2, 2026, where it first appeared in the News section. Add MeidasTouch as a Preferred Source by clicking here.