A Rare Cancer, a Promising Treatment and a Backup Plan
His daughter's best friend had a 50-50 prognosis. So Paul Romness started a biotech company to change the odds.
Paul Romness has shaved his head three times to raise money for cancer research. But whenever he tells the story of how his biotech company, OS Therapies, got started, he always begins with the present.
“Olivia’s doing great,” he says of his older daughter’s best friend, who as a teenager in 2017 was diagnosed with osteosarcoma, a rare form of bone cancer. Today, Olivia is five years cancer free. So far, the story has a happy ending.
Romness, an executive with many years of experience in the biopharmaceutical industry, initially started his company as a safeguard of sorts, just in case—God forbid—Olivia’s cancer were to come back. Now OS Therapies has a promising new treatment for the disease in clinical trials and is aiming for FDA approval.
Olivia Egge was always an athlete. Growing up in Arlington, she was a promising gymnast with the Arlington Aerials, and a competitive diver at Washington Golf & Country Club.
But in September of 2016, her knee started hurting after she’d taken up running. “I knew something was wrong,” says Olivia, whose family lives near Marymount University. “No one really believed me. They just thought I was being dramatic.” Or that the injury was wear-and-tear from all those years of gymnastics, or perhaps growing pains.
By December, she could no longer do the splits. Eventually, she couldn’t straighten her leg and it hurt to walk. “It was like this dull pain. It felt like bone rubbing on bone. Like I didn’t have any cartilage in my knee.”
Romness’ brother David, an orthopedic surgeon at OrthoVirginia, ordered an X-ray. “He saw something funny on the X-ray,” recalls Olivia’s father, Michael Egge, an antitrust lawyer and lifelong Arlington resident.
Olivia was 16 and a student at the National Cathedral School in D.C. when she was officially diagnosed with osteosarcoma, joining the ranks of some 800 to 900 new cases in the U.S. each year. About half of those are children and teens, according to the MD Anderson Cancer Center in Houston.
“I knew something was wrong. It was like this dull pain. It felt like bone rubbing on bone. Like I didn’t have any cartilage in my knee.”
Romness still remembers the day—Feb. 3, 2017—when Olivia, the child of close friends whom he and his wife, Bridget, had traveled with many times, who came to their house for paella and gumbo, the bestie of their older daughter, Bergen, became part of that statistic.
“It was just heartbreaking,” he says. “My brother, who is an orthopedic surgeon at Virginia Hospital Center [now VHC Health], who lives four doors down from me, who lives across the street from the Egge family, is the one who diagnosed her.”
At the time, the treatment for osteosarcoma hadn’t changed in nearly four decades. Olivia began an aggressive course of chemotherapy. In early April 2017, she underwent a surgical procedure in which doctors salvaged the limb by replacing her right knee and some of her tibia. About a week later, she resumed chemo, which lasted nine months.
“The chemo dosages Olivia got would have killed me,” her dad says.
She spent more than 100 days in the hospital with her mom by her side. Most nights April Egge slept on a small sofa next to her daughter’s hospital bed.
Sometimes chemo and surgery are all that’s needed to put an osteosarcoma patient into remission. But in about half of the cases, the cancer returns. At that point the survival rate drops to 13%.
Determined to have a backup plan for Olivia should that awful scenario occur, Romness and Michael Egge founded a nonprofit, the Osteosarcoma Collaborative, in June of 2017. They started raising money for medical research—first reaching out to friends and family, Romness says, and later courting “high net worth individuals.”
They orchestrated three “Shavers & Life Savers” head-shaving fundraisers benefiting the St. Baldrick’s Foundation (a nonprofit focused on finding cures for childhood cancers) at Washington Golf & Country Club. Romness shaved his head at each event.
In three years’ time, the nonprofit raised $1.5 million for two big research grants. “The idea was that if [Olivia’s cancer] did come back, that we’d either be in a clinical trial or we would [have a new drug] approved by the FDA by the time that she recurred,” Romness says.
Other families involved in the nonprofit had children who had died from osteosarcoma. Their stories strengthened Romness’ resolve.
“We met all these other parents,” he says, “and I realized we had to find another way for this disease to be treated.”
In November 2017, the Osteosarcoma Collaborative hosted a D.C. summit of medical experts from across the country to discuss genetic testing and the latest osteosarcoma research. That’s when Romness learned that one of the most promising treatments on the horizon was a drug called OST-HER2.
Coincidentally, a week earlier, he had read in an industry journal that the company licensing the drug research on OST-HER2 was relinquishing rights to the technology.
“I knew why the pharmaceutical company was giving up,” he says. The disease was rare. “It’s hard to make money on 1,000 cases a year. It’s really expensive to do clinical trials. In general, the biopharmaceutical industry goes toward the big shiny objects. But I saw it to be a huge opportunity.”
Romness emailed eight osteosarcoma experts and said he was thinking of starting a company to maintain the drug’s momentum. His goal was to license the technology with hopes of gaining FDA approval for the treatment. They all wrote back instantly. He had his advisory board.
He cashed in his 401(k)—and his kids’ college fund, he says—and launched OS Therapies in June of 2018.
By October 2021, the company had raised $8.6 million and the first patient had begun receiving treatment in clinical trials.
“I knew why the [other] pharmaceutical company was giving up. It’s hard to make money on 1,000 cases a year. It’s really expensive to do clinical trials. But I saw an opportunity.”
This wasn’t Romness’ first foray into biotech. He grew up in Arlingwood, a neighborhood near Chain Bridge, studied finance at American University, earned a master’s in health policy from George Washington University, and then spent more than 25 years in the biopharmaceutical industry, working for big companies such as Johnson & Johnson, Amgen and Boehringer Ingelheim. (His wife, Bridget, is also in health care; she’s a physician liaison at Children’s National.)
His first job out of college was selling orthopedic implants at Walter Reed Medical Center—the military’s global osteosarcoma center. “We saw cases coming in pretty frequently,” he remembers. “I thought it was common and highly treatable. It is neither common, nor highly treatable.”
At the time of Olivia’s diagnosis, Romness was heading a tech startup focusing on pain management for patients with drug addiction. He could have followed the standard cancer-support playbook—write a check, drop off dinner, participate in a fun run, provide moral support—but he felt compelled to do more. “Because I could,” he says.
He knew how to raise money. He knew how to shepherd a drug through FDA approval.
It wasn’t his kid who got sick—but it could have been. “I saw it as something I could do for Olivia and her family. And then I got to know all the other parents who’ve lost kids, which is just brutal,” he says, choking up. “I saw what the other parents were doing. They had to channel their grief. It empowered me.”
Ask anyone who knows Romness to describe him and you’ll hear some variation of how bright he is, and how big his heart is. “He’s wicked smart,” says Jennifer Redmond, a commercial real estate executive who invested in OS Therapies after losing a close friend to colorectal cancer.
A neighbor, Jamie Doll, quips that he didn’t have enough hair to shave his head in solidarity, but he readily donated to the cause. He once had a basset hound, Tyler, who died of osteosarcoma. He can’t imagine if it had been his child.
“It was very fast moving,” Doll says, remembering his dog’s cancer. “I know what this is about. I couldn’t imagine one of my sons having this. I would have done anything to extend their life, to make sure it didn’t come back.”
Doll and his wife, Anne, were initial investors in OS Therapies. Their son, Jack, a Washington-Liberty High School graduate with an engineering degree from the University of Georgia, has worked for OS Therapies as a research projects manager since May 2020.
“This is something we wanted to be a part of,” says Doll, who owns a construction company. “I believe in Paul. I truly believe he’s a visionary.”
The good news for many osteosarcoma patients is that chemotherapy and surgery to remove the cancer is “largely effective,” says immunologist and oncologist Robert Petit, chief medical and scientific officer at OS Therapies.
The bad news: Patients whose cancer returns cannot have additional chemotherapy. The cancer cells that survive the first round of chemo become resistant, and another round of chemo doesn’t work.
“Once osteosarcoma recurs, it pretty much just keeps coming back over and over again until it gets out of control,” Petit says. “We know once they’ve had one recurrence, the likelihood of another one is very, very high—almost 100% within a year.”
Without a new way of tackling the disease, a recurrence of osteosarcoma is almost certainly a death sentence, he says.
The treatment that OS Therapies is now shuttling through clinical trials is a form of immunotherapy for patients whose osteosarcoma has returned. The patient is injected with a tiny amount of bacteria that the body will recognize and rally to eradicate. What’s unique about this bioengineered bacteria, however, is that it is loaded with cancer-fighting antigens. The bacteria itself disappears within 48 hours without causing any disease, but it triggers a strong immunologic response. The body attacks the cancer cells, thinking it’s fighting the bacteria.
The body attacks the cancer cells, thinking it’s fighting the bacteria.
“It basically charges up an army of T cells—white blood cells—to search all throughout the body,” Petit says, “and hunt down the cancer cells and eliminate them from growing; or slow their growth; or, in the best-case scenario, kill them so that they can’t come back.”
OST-HER2 treatment is given by IV infusion every three weeks for 48 weeks. “Every time we give a treatment, a new round of cancer-fighting cells are generated,” Petit explains. “So we keep generating these cancer-fighting cells over and over again with these treatments.”
So far, the clinical trials have enrolled 21 kids with osteosarcoma whose cancer metastasized to their lungs. The goal is to have 39 to 45 patients in the study, drawing from 20 different Children’s Oncology Group institutions (clinical trials groups supported by the National Cancer Institute) nationwide.
Researchers aren’t doing a traditional double-blind study, Romness says, “because no parent would put their kid in a trial that they know, if they get the placebo, they’ve got a 13% chance of survival.”
Since a full course of OST-HER2 takes nearly a year, it will be a while before the team can compare survival results with historical cases, but Petit is optimistic. “A number of patients have been getting lots and lots of treatments, and they still have no evidence of recurrence,” he says. “That’s a good sign.”
The treatment, which could receive FDA approval as early as the end of 2023, has already shown promising results in dogs. Osteosarcoma is the second leading cause of death in large dogs, Romness says, after car accidents.
“It’s not going to be a magic cure for everyone who takes it,” Petit says, “but on the other hand, right now, there’s nothing. There has to be a better solution than to keep cutting these tumors out when they come back, until the patient finally has so many of them that they can’t control them with surgery.”
As for Olivia Egge, the Arlington athlete whose osteosarcoma diagnosis set the wheels in motion?
“I’m feeling good,” says the fourth-year student at the University of Virginia, where she and Romness’ daughter Bergen are sorority sisters. (Olivia’s twin brother, Luke, is also a student at UVA. Their younger sister, Sophie, is a sophomore at Duke.)
The past five years haven’t been an entirely smooth ride. Her hearing is damaged from chemo, and an infection required additional surgeries to rebuild her right leg. She has to drive with her left foot.
Now 22, Olivia is majoring in global public health with a bioethics minor, and gearing up for the MCAT in January. She hopes to attend medical school and perhaps pursue a career in pediatrics or oncology. She recently spent five weeks working at an osteosarcoma lab at UC-San Francisco and is an emerita board member of OS Therapies.
In her spare time, she loves traveling, hanging out with friends and reading. She’s aiming to read one book a week.
She tries not to dwell on “what ifs,” but it’s hard.
“I’m scared every day of my cancer coming back,” she says. “But the fact that people care and are putting these resources and effort into [this treatment]—that gives me hope.”
For her father, Mike, the end goal is both personal and universal. “I pray every day that it works,” he says. “There’s no magic bullet, but if it cures even one kid, it’s worth it.”
Freelance writer Wendy Kantor always considered herself a pretty good Little League fundraiser and seller of Girl Scout cookies…until she met Paul Romness.