This article was published in the New Haven Business Journal.
Last February, as the Biden administration reignited the Cancer Moonshot initiative to accelerate the fight against cancer and reduce cancer deaths by 50 percent over the next 25 years, one of the goals was to address inequities in access to cancer screenings, diagnostics and treatment.
In support of that effort, this past April the U.S. Food and Drug Administration (FDA) issued new draft guidance to help pharmaceutical companies enroll more participants from underrepresented populations into clinical trials.
“Ensuring meaningful representation of racial and ethnic [groups] in clinical trials … is fundamental to public health,” said FDA Commissioner Dr. Robert Califf, in a department statement. “Achieving greater diversity will be a key focus of the FDA to facilitate the development of better treatments and better fight diseases that often disproportionately impact diverse communities.”
That’s a challenge that New Haven-based Jumo Health, a global health education company, has been helping to address. The company, which was founded in London in 2009, started with a series of comic books for children to help explain common medical conditions, like diabetes and asthma, and medical procedures, such as CT scans, MRIs and blood tests.
By 2015, the company had attracted the attention — and investment — of venture capitalists, who brought in a new management team, including current President and CEO Kevin Aniskovich.
“We largely took what the company was doing around education and health literacy [for kids] and applied it to a larger market,” Aniskovich said.
That included expanding its target audience to include adults and sharpening its focus to increasing racial and ethnic participation in clinical trials, a key growth sector of the healthcare industry.
According to market projections from Precedent Research, the clinical trial market is expected to grow 5.7% annually from $51 billion in 2021 to more than $84 billion by 2030.
The move paid off. Over the past six years, Jumo Health’s revenue has been up over 400% and the company has increased its employee base to 70, nearly doubling its staff annually in each of the past two years.
In 2022, the company made the Inc. Magazine 5,000 list, recognizing the fastest-growing companies in America. Jumo Health ranked 1,891 on the list.
Aniskovich said his company works with 80 pharmaceutical companies, including the world’s top 10 pharmaceutical giants — the company’s core customer base.
Jumo’s customized educational resources have expanded to address more than 200 medical conditions and are available in more than 90 languages in 75 countries. Aniskovich said his company is currently providing education to support clinical trials in more than 20 countries.
Jumo Health also sells its books and educational materials to more than 150 hospitals across the United States.
Aniskovich said diversity in clinical trials is important because variations in genetic coding can make treatments more or less toxic for one racial and ethnic group than another. He points to a drug that fights a type of cancer where 20% of diagnosed patients are Black, but only 1.8% of clinical trial participants were Black.
“We can’t ensure the [disease] is being effectively treated for all the disparate populations it purports to serve,” he said.
But increasing minority participation in clinical trials, Aniskovich said, requires addressing a legacy of mistrust and skepticism of medical testing among minority populations.
“We have a history [in the United States] of placing communities of color in the margins,” Aniskovich said.
High-profile examples like the Tuskegee experiment created a lasting impression. The 40-year U.S. Public Health Service study of untreated syphilis in Black males — without their consent — from 1932 to 1972, resulted in 128 deaths.
But distrust is only one issue. Aniskovich said factors such as socioeconomics, health literacy, language and geography — which can impact access to care — are also important.
“African-Americans [and Hispanics] aren’t a monolithic block,” he said. “A 45-year-old Black man from Mississippi might have a very different perspective than a 25-year-old Black man from Boston.”
As a result, Jumo employs a customizable approach to its materials.
“We need to be more flexible based on who we’re trying to educate,” he said.
Clinical trial recruitment
To gain diverse healthcare consumer insights, Jumo partners with numerous patient and healthcare advocacy groups across the world, including the International Children’s Advisory Network (ICAN), a global consortium of youth advisory councils that provides a voice for children and their families in medicine, research and innovation.
Leanne West, chief engineer of pediatric technology at Georgia Tech and president of ICAN, a volunteer-run organization, said that providing youth participants a voice, particularly those with rare diseases, is empowering for children.
“Participating in clinical trials helps kids take back over their life a bit from a disease that has taken so much from them,” West said. “Many kids, even if [the pharmaceutical] being developed may not be in time to help them, don’t want the next child to go through what they did.”
West said that Jumo Health has captured the real-life experiences of ICAN-affiliated patients.
“Whether it’s books or [animated] videos, what Jumo is doing helps to alleviate the fears a kid might have and makes it more likely they’ll be able to recruit them for a [trial].”
Successful recruitment and retention of participants not only impacts the efficacy of the clinical trials, but the cost as well. The National Institute of Biomedical Information estimates it costs more than $6,500 to recruit one patient to a clinical trial and, on average, 30% drop out.
Studies by Forte Research have shown that 80% of trials are delayed at least one month due to lost patients, with potential losses ranging from $60,000 to several million dollars per day.
To address that challenge in addition to its educational services, Aniskovich said Jumo will begin to provide a clinical trial recruitment service in 2023, with an exclusive focus on recruiting individuals of color. It’s part of the company’s five-year strategic plan.
Aniskovich remains bullish on his company’s future. Retention of pharmaceutical clients hovers at 90 percent and Jumo is actively hiring more staff to meet market demand.
He also said the company, which actively studies how diverse consumer groups consume information, is exploring M&A activity to expand some of its digital product offerings.
“We have a consumer-driven healthcare market now.” Aniskovich said. “We need to explain complicated clinical trials in ways that people can understand and, most importantly, act upon.”
Jumo Health develops age-appropriate, culturally sensitive, and relatable educational resources for patients and caregivers. We have experience serving diverse populations, covering more than 160 health topics across 75+ countries and 90+ languages – and we’re always expanding! Our multicultural offerings are designed to explain the latest in evidence-based literature using highly visual elements so that everyone can understand complex medical topics. Jumo Health collaborates globally with more than 180 advocacy groups and community organizations to ensure an authentic patient experience is accurately represented.