The often-overlooked illness radically disrupts hundreds of thousands of lives each year.
The Health and Human Services Department recently kicked off market research to inform an ambitious, multimillion-dollar effort to spur rapid breakthroughs against Lyme disease, a common tick-borne illness that can upend lives.
“With 30-plus years of the funding for Lyme and everything not going up much—but the cases increasing a lot—patients have looked at it as the government is ignoring them, and denying their suffering. And it's just been really antagonistic,” HHS Chief Data Scientist Kristen Honey told Nextgov this week. “Usually when there's political or scientific controversy like that, it means we need more data. We need more information, more science—and science will be our way out.”
Honey is no stranger to the trauma posed by the infection: She personally endured it. In a conversation with Nextgov, Honey shed some light on the complications that accompany Lyme disease and provided a deep look into the department’s ongoing work to accelerate new advancements for patients who suffer from it.
Big Aims and Baby Steps
With a dual role also as a senior adviser to the Assistant Secretary for Health, Honey considers herself “an interdisciplinary scientist with an eclectic background.” Around the dot-com heyday and after the bubble burst, she gained project management skills helping co-found an internet company in California. After gaining her doctorate from Stanford, she went to the Energy Department and later worked on evolving national data-centered initiatives in the White House during both the Obama and Trump administrations. Honey spent roughly three years there—about a year and a half serving each of those presidents—and then she burned out.
“Where do I recharge my batteries? I recharge by connecting to a mission, a purpose. It's not just data and metadata policy guidance to agencies—but data to solve a problem,” Honey said. “And as I looked around the different agencies, HHS’ mission really called to me.”
She joined the agency in 2018, with goals to help innovate on top of the government-driven data ecosystem that she had been involved with before. That year, HHS launched its Lyme Innovation initiative.
“In Lyme disease, there's a lot of distrust in the community. Many people equate it to HIV/AIDS of the 1980s,” Honey explained. “This is the 21st-century version of that—where people feel that hundreds of thousands, if not millions of people are struggling and suffering, and never fully recover their health, even after they go through the treatment protocols. Ten to 20% of the people never return to their full wellness.”
Fatigue, body aches, dizziness and fever are some of the symptoms of the bacterial infection. Various bodies react to it differently and it can become debilitating if not properly treated. But for a variety of reasons, the disease is also difficult to diagnose.
“There's a big divide between what we know and what we don't know,” Honey said. “We haven't invested a lot of science there relative to the scale of the disease and the impact of it, by the numbers.”
HHS’ Tick-Borne Disease Working Group published its first set of recommendations on addressing Lyme disease in 2018, which included engaging patients and the broader affected community and pushing for innovative technology and partnerships that were previously untapped in the realm. In response, the comprehensive initiative came to be.
“The way we originally defined it was to be inviting to anyone who wanted to join us. So lived experience, whether it was being a caregiver, or a Lyme patient yourself, or just someone who has a friend or family member and you're interested in the topic, or you're an M.D. or Ph.D. with all the credentials in the world. Lyme Innovation was our way to create a safe space where diverse stakeholders could come together, and their voices could be heard equally valued and connected in ways they hadn't been before,” Honey noted. “It was a hypothesis and a test to see if we could get [them all] to work constructively together. It was a lot of baby steps.”
Even early into that work, the urgent need for more federal funding and data-driven approaches to address the issue became very evident to those involved. But that wouldn’t come quick.
“People kept saying, ‘We don't have time. Patients need solutions now—we needed solutions 10 years ago.’ They were suffering and struggling, so, you know, what can we do now? And that's where the partnership idea came about,” Honey explained. “We don't need to wait for the congressional budgets to come down, for the priorities to realign with the increasing scope of the problem and scale the problem. Through partnerships, we can begin to work today.”
On the heels of that epiphany, HHS last year announced that it teamed up with the Steven & Alexandra Cohen Foundation to launch the $25 million “LymeX” Innovation Accelerator. At the time, the department deemed it to be the “largest Lyme disease public-private partnership in history.”
Through LymeX, officials intend to advance tick-borne disease innovation via three areas of focus. Those include stakeholder engagement and education and awareness.
Additionally, much of the resources will go to the LymeX Diagnostic “moonshot,” a series of grand-prize challenges HHS is launching this year to help catalyze rapid advancements and transform how the disease is uncovered. Current approved diagnostic tests are considered “indirect,” in that they detect antibodies produced inside humans in response to infection. It can take many days for antibodies the tests spot to develop, meaning patients can at times test negative even if they have the disease.
“If we can get an accurate diagnostic that will accurately measure Lyme disease at all stages of the disease—especially if it's an active infection, and you could measure whether there's still a bacterial infection—that will be game-changing,” Honey said.
Department officials recently published a request for information to kick off research into the existing ecosystem, a necessary move ahead of embarking on the challenge. HHS published an official blog on it Thursday, which Honey wrote.
“This RFI is putting out a call to industry and academia, entrepreneurs—everyone out there in the diagnostic space—and saying, ‘What are you working on that might apply to Lyme disease?’” she told Nextgov. “We've invested over $2 billion in COVID diagnostic research over the past year. Some of those breakthroughs and some of those technologies must be applicable to other conditions. So, why not Lyme disease?”
‘Data with a Soul’
Honey had many ideas about potential technologies and data-centered approaches to solve existing problems around Lyme disease in the beginning.
“When we started this, I was thinking that things like wearable technologies might really help an often invisible disease like Lyme disease,” she explained, adding that many of the symptoms appear similar to long-term COVID-19. It can involve brain fog or trouble sleeping, which she noted are almost subjective. “If you don't go into the doctor’s office at the exact moment when your heart is palpitating, you might look totally fine. So with wearables, I actually thought that this might be a way to quantify the invisible diseases and high-resolution data on people sleep disturbances, or tachycardia” could essentially be measures indicating that something is wrong.
But in the Lyme Innovation initiative’s first technology sprint in 2018 and 2019, she quickly learned that being open can lead to even better outcomes than what’s first expected. Via that pilot, HHS asked people to submit ideas on how to confront tick-borne diseases through emerging technologies. To Honey’s surprise, two of the applications came from middle school students.
“I remember reading them and I'm like, these are the sweetest things. I don't want to break a little fifth grader’s and an eighth grader’s heart. We didn't have any rules that it had to be adults,” so HHS accepted them, she said.
Competing against some of America’s savviest technologists, one of those middle schoolers produced a crowdsourcing app that people across the globe now use to track and log ticks.
“That really humbled me in the sense of like, don't prejudge innovators—because the people you expect the least of will do the most unexpected things and blow your mind,” Honey said. “Always give them the space.”
In this fresher effort around the Lyme Innovation accelerator, she hopes to help drive outcomes that will help patients feel more heard.
“Because what they're sick with, what they're struggling with, is absolutely valid. And if science can't yet measure it, if our diagnostics aren't there, that doesn't mean it's not happening. It means we need better diagnostics,” she noted.
Honey added that relatively recently, the Centers for Disease Control and Prevention upped its estimates of how many Americans endure Lyme disease each year, from around 300,000 new cases to 476,000 new cases.
“And that’s still an underestimate because that's just treated and diagnosed,” she explained. “We know a lot of people don't know they had it—like I did when I got bitten.”
Growing up, Honey was outdoorsy—a “tomboy,” she said, who encountered bug bites all the time. So, when she was bitten by dozens of ticks on a small island near Maine in 1999, she thought little of it.
“Then I got what I thought was the summer flu. But I never had the bull’s-eye rash—now, we know not everyone gets a bull's-eye rash,” she noted. “It kind of went away. But about six months later, I completely collapsed.”
Doctors originally thought she could be suffering from mononucleosis. But after many weeks of seeing her suffer, Honey’s mother—who was trained as a nurse—pushed doctors to consider that maybe the mystery illness was bacterial, not viral. She was prescribed medication that seemed to make her better.
“And then I had 10 years of just slow health decline. It was like weird symptom, after symptom, after symptom. And finally, about a decade later, I completely collapsed in 2009. And that was my worst. At times I needed a wheelchair, had Parkinson's-like shakes, couldn't see. I looked at letters, and they would look like wingdings and hieroglyphics,” Honey said. “After I got a definitive diagnosis, by then I'd already dropped out of school and couldn't work. It took two and a half years of nothing but full-time recovery.”
Her life was turned completely upside down by the disease, and at one really low point, doctors told her she might never live independently or really work again.
“But I vowed when I was at my sickest that, if I ever got out, I would try to pay it forward and help others who weren't as lucky—and that's where a lot of this came from,” Honey said. “And listening to the community, it's partly because I was part of that community, and that's the community that saved me.”
When she reflects on the almost half a million patients that face Lyme disease each year, Honey said she always goes back to the quote by research professor Brené Brown: “Maybe stories are data with a soul.”
“If you think of those 476,000, each one of those data points is a human being—people love them. So bringing out the human dimensions is something that I think our LymeX accelerator and the stakeholder engagement in Lyme Innovation, hope to do,” Honey noted. “Because the numbers are staggering on Lyme disease. But behind every single case, there are heartbreaking stories—and those stories are really what's motivating us to do this work.”