Multiple Sclerosis Awareness Month: Allie's Story
I was diagnosed with Relapsing-remitting Multiple Sclerosis (RRMS) when I was 21 years old. RRMS is the most common type of Multiple Sclerosis (MS). MS is a ‘chronic, incurable, and unpredictable disease of the central nervous system (CNS) including the brain, optic nerves, and spinal cord.’ It presents itself very differently amongst patients and is hard to detect for that reason. To me, it’s an invisible disease because if you are not experiencing symptoms, a flare up, or episode, you may be able to look, feel, and operate as normal. This makes it difficult to not only diagnose but explain to loved ones, friends, and beyond. It also makes it difficult to uncover if it is causing feelings like fatigue, confusion, imbalance, high emotions, and more.
There was a period of about six months from the onset of my symptoms to an official MS diagnosis. It was a confusing time for me – I had been in college enjoying life with my best friends. I went home for break with my family and one day my left hand went entirely numb. I figured it would bounce back and just ‘fell asleep’ like our limbs sometimes do, but it perpetuated. It was hard to do my schoolwork using my computer, hard to explain to my parents, and my friends, and ultimately difficult to understand the best next step.
I went home and received an MRI where they detected some demyelination of my nerves on my spinal cord. This means that the protective barrier on my nerve cells in that area were destructed and therefore my nerves were exposed. This often leads to Multiple Sclerosis, but it was too soon to tell. Myelin is important because it works to augment the conduction of nervous signals and protect our nerves from disruptive invaders. I was frantic and scared because by then, my symptoms had progressed and presented themselves periodically. My episodes came and went a few times per day. It was focused on the left side of my body, so in addition to my numb hand, I would get shooting pains down my leg, numbness and tingles on my face and tongue, and slight loss of balance even when completing simple tasks like walking back from class.
About six months from the initial MRI, I was diagnosed with early onset MS. At diagnosis, when my first question was ‘what could have caused this?’, I was told that MS is caused by ‘environmental factors.’ So, the ambiguity of how or why left me disheartened as I was searching for answers. It broke my heart witnessing my parents go through this diagnosis that I would fight for my lifetime. I can’t imagine being a parent in that situation. That is why our caregivers are just as important as our patients, the impact is just as palpable.
From that day, I actively chose to not let my MS define me and instead chose to harness a strong and positive outlook on my future and take as best care of myself as possible. I worked to control the controllable. I addressed vital deficiencies I faced like a major lack of Vitamin D and B12, I ate foods that were proven to reduce inflammation and support your immune system, and I continued to exercise daily to keep peace of mind. But, ultimately, that wasn’t enough, and legions continued to appear on my MRI scans in new areas like my thoracic spine and my brain. I had to decipher a treatment path to ultimately mitigate the risk of becoming physically disabled in the future.
Now, there isn’t a cure for MS, but there are many preventative treatments that are proven to slow the progression of the disease. The first neurologist I saw recommended a treatment path which was a three-time weekly injectable medication. Needles don’t bother me, but that sounded high-maintenance and I had to assume there was a better way, so my family and I kept looking for the best specialist for me.
We all have different needs, fears, and anxieties, depending on our access, age, stage of life. It is important to be diligent in working with providers who understand us as individuals first above all. Once I found my present-day neurologist whom I trust with my life, I felt like I was in the best hands to tackle my future and be as symptom-free as possible. He immediately shut down the idea of the injectable medication because he didn’t think I’d be comfortable living with scars and marks from injection sites, especially as a young woman. I will never forget that he paid such attention to detail, and at the time those injectables were extremely popular. But his approach was to help me live the most disability-free life as possible and that also came with mitigating treatment burden. He knew that the less time I spent thinking about my disease, the more time I spent living my life. He suggested a bi-annual intravenous treatment where I come on site twice a year, infuse, and then go live my normal life.
When I joined Jumo Health I was able to make immediate parallels to my experience, because our goal here is to create the most trusted, relatable, and actionable resources possible so patients are empowered and educated in their clinical trial journey. I was looking for a doctor whom I could trust with my life, understood where I was in my journey, educated me, and helped me take the appropriate steps to be the best version of myself living with MS possible. It really proves the power of attention to detail.
Luckily for me, I haven’t experienced a physical episode or symptom in years, and I am fortunate enough to be able to dismiss that I am living with MS most days. But I know that there are others that are not as fortunate which is why we continue to raise money for research, raise awareness for patients, and strive for as many health equities as possible. We, as patients, all deserve the care we seek and that is why I am so passionate about being a part of the Jumo Health family to create awareness, access, and ultimately action for the empowerment and betterment of patients and their families.
Jumo Health Launches Suite of Services to Drive Health Equity in Clinical Trials
New Haven, CT and Los Angeles, CA – March 1, 2023 – Jumo Health, the global provider of age appropriate, culturally sensitive medical education, announced today that, together with the I Choose Life Foundation (ICLF), it has expanded its health equity service line to include the recruitment and retention of people of color in clinical trials.
To guide their pharmaceutical and biotech customers as they endeavor to develop culturally responsible medications, Jumo Health and ICLF have amassed a national network of more than 2,000 churches that primarily serve Black congregations. Those 2,000 churches, which are located across the United States, have more than 500,000 members.
This group of a half million people offers rare access to a community that is historically underrepresented in clinical trials. While approximately 14% of the United States population is Black, the community only makes up approximately 5% of clinical trial participants. There has been a long history of medical and research-related abuse of African Americans in the US, including the USPHS Syphilis Study at Tuskegee and treatment of Henrietta Lacks. This mistreatment has led to decades of mistrust of the health care system by the Black community, which when combined with limited access to health care and difficulty reaching clinical research sites, has resulted in a severe lack of participation in clinical trials.
“Jumo Health explains difficult medical concepts in ways people can understand and act upon,” stated Kevin Aniskovich, President and CEO of Jumo Health. “With a keen understanding of health literacy, how various communities consume information, and the importance of storytelling, we ensure that people can ‘see themselves’ in the information provided; critically important when serving communities that have been historically overlooked by government and industry,” continued Aniskovich.
On the heels of the COVID-19 pandemic, the US Food and Drug Administration (FDA) acknowledged these disparities and recently issued draft guidance that will soon require pharmaceutical companies to create a “Race and Ethnicity Diversity Plan” for each new drug in development to “enroll representative numbers of participants from underrepresented racial and ethnic populations in the United States, such as Black or African American, Hispanic/Latino, Indigenous and Native American, Asian, Native Hawaiian and Other Pacific Islanders, and other persons of color, in clinical trials.”
“There’s no reason that my community accounts for 14% of the United States’ population yet we are only 5% or less of those participating in clinical trials,” shared Tony Wafford, President and CEO of ICLF. “Over 70 years ago Dr. Martin Luther King Jr. said, ‘Of all the forms of inequality, injustice in health care is the most shocking and inhumane’. The Black community can no longer be left behind when it comes to culturally competent education, recruitment and Black retention in clinical trials and research. Through this partnership, I Choose Life Foundation and Jumo Health—we’re going to turn that narrative around! My goal is to make the Black community self-conscious agents of their own health and wellness,” concluded Wafford.
“Having met during our work on a COVID-19 clinical trial, Tony and I quickly realized that by working together we could have a positive impact on the standard social determinants of health,” said Aniskovich. “COVID-19 was infecting Black and Hispanic people at 3.5 times the rate of the general public yet participatory representation within those communities was embarrassingly low; we knew our energy and effort in developing best in class solutions in concert with community partners was to be our top priority,” said Aniskovich.
To support its education and newly formed community recruitment and outreach efforts, Jumo Health has formed a Community Advisory Recruitment and Engagement Solutions Council (the CARES Council) comprised of Black leaders across the country including its founding Council members:
- Rev. Dr. Howard-John Wesley – Alfred Street Baptist Church (ASBC), Alexandria,VA
- Rev. Dr. Marcus D. Cosby – Wheeler Avenue Baptist Church, Houston, TX
- Rev. Dr. Frederick Douglass Haynes III – Friendship-West Baptist Church, Dallas, TX
- Rev. Dr. John E. Jackson, Sr. – Trinity United Church of Christ, Gary, IN
- Rev. Oliver Buie – Warren Chapel, Los Angeles, CA
Working together, Jumo Health, ICLF, and the CARES Council seek to ensure that Black participants are appropriately represented in future clinical trials.
About I Choose Life Foundation
The mission of I Choose Life Foundation is to improve the health and well-being of the African American community through addressing health disparities in five interrelated areas: Cardiovascular disease, Diabetes, High Blood Pressure (hypertension), Mental Health, Obesity Cancers and STI’s. Drawing on its life-affirming culture, values, and internal resources; the community will become effectively informed, organized and will engaged in cooperative health care and prevention projects focused on choosing life and rejecting ideas and actions which lead to health deterioration and death. Learn more at www.ichoose-life.com.
About Jumo Health
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. We use familiar mediums to ensure this – from comic books and animation to virtual reality experiences and authentic documentary-style patient stories – all tailored based on age and audience. Jumo Health collaborates globally with more than 180 advocacy groups and community organizations to ensure an authentic patient experience is accurately represented. For further information, visit www.blog.jumohealth.com.
Media contact
For more information about Jumo Health or this article, contact Dani Himelright by calling +1 (614) 284-6804 or emailing [email protected].
New Haven Biz: Jumo Health helps increase diversity in clinical trials
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.
Educational support
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.”
We Are Jumo Health: Dilpreet Barn
An Interview with Dilpreet Barn, Account Director
Great companies are made up of great people. Here at Jumo Health, our most valuable resource is our team. We are a collective of medical folk, product people, designers, and storytellers that share a common goal to change health care today. Through our We Are Jumo Health series, we will introduce you to the dedicated people who are the heartbeat of Jumo Health.
This month, we’d like you to meet Dilpreet Barn, who has been an Account Director in the Customer Success department at Jumo Health since March 2022. Dilpreet lives in the Detroit area of Michigan.

Why did you join Jumo Health?
I’m very excited to have joined Jumo Health to help expand Jumo’s impact and break down medical communication barriers to more patients. I believe in placing the health back in the hand of the patient. I am thrilled to be part of a team that strives to help others, inspire, and educate patients on their health and wellbeing every day! ☺️
What motivates you?
I am deeply motivated by the opportunity to make a difference in the lives of others, and I often feel inspired when I see the positive impact that our educational resources have on patients, caregivers, and their families.

What do you like most about working in healthcare?
I love it because even though I don’t always see the end result, I know I was part of their recovery. Being able to help someone through trying times and making a difference in at least one person’s life is worth it.
What is the most important thing you have learned in last 5 years?
In the last five years, I have found remembering to look on the bright side as one of the most important take-aways. Focusing on the positive can help turn certain situations around. Being able to remain positive and look at things with optimism can really go a long way! This in turn can drive us to try to bring out the best in ourselves and others.
What are some other hobbies you have outside of work?
Traveling, sports, volunteering and concerts! I love traveling, and I try to take a trip every season. Traveling allows me to adapt to new situations and use my organization and planning skills to ensure I have the most fun I can!
Jumo Health’s Sindy Nathan Honored on MM+M’s 40 Under 40 List
New York, NY, December 5, 2022- Jumo Health announced today that Sindy Nathan, Vice President & Team Leader, Strategic Solutions, is part of the 2023 class of MM+M 40 Under 40 honorees.
The 40 Under 40 program, in its fourth year, honors the healthcare industry’s best-regarded young talent. Jumo Health is honored to be included on a list that includes individuals who hail from a range of pharmaceutical and biotech companies, including Novartis, GSK, Takeda, Janssen, and Horizon Therapeutics. Honorees from these organizations hold a range of competencies including account, strategic and creative positions.
Nathan joined Jumo Health (formerly known as Medikidz) in 2010 and has been instrumental in the company’s exponential growth. During her tenure, she has held various positions in sales and sales leadership, serving pharmaceutical customers and working alongside patient advocacy groups on a global scale. Most recently, she has taken a leading role in the company’s diversity, equity, and inclusion efforts.
“It’s not often you meet someone so committed to purpose that they marry their work and personal lives – yet this is exactly who we are fortunate to have in Sindy,” shared Kevin Aniskovich, President and Chief Executive Officer of Jumo Health. “As one of the longest standing members of the team, Sindy has not only witnessed our transformation but has been influential in positioning our key value proposition in the market which has led Jumo Health to where it is today,” continued Aniskovich.
The 2023 MM+M 40 Under 40 class will be celebrated at a dinner to be held at The Edison Ballroom in New York City on February 16. For more information about MM+M’s 40 Under 40 program, visit www.mmm40under40.com.
About MM+M
First published in 1966 as Medical Marketing and Media, MM+M is the media brand of record for pharmaceutical marketing and commercialization, delivering the most balanced and relevant coverage of the growing industry. The title produces an essential mix of online breaking news and analysis combined with monthly print features — timely, objective, original editorial content for an executive audience of leaders and thinkers who work in pharma, medical device, diagnostics and greater healthcare marketing. MM+M also develops conferences and live and virtual events, and engineers the industry’s premier awards program, the MM+M Awards.
World AIDS Day, “Lets Stand in the Light”
Today is World AIDS Day! We can be proud of the tremendous progress we’ve made in the last forty-one years since the first case of HIV/AIDS was reported in the US. Over the past four decades, science and research has come a long way in treatment and care, for those diagnosed with HIV/AIDS and it’s no longer considered a death sentence.
As great as all of this is, we still have an incredible amount of work to do to end the AIDS epidemic completely. Equally important is what I believe is our greatest challenge before us is to eradicate the stigma and shame associated with an HIV/AIDS diagnosis.
The Centers for Disease Control and Prevention (CDC) is pursuing a high-impact HIV prevention approach to maximize the effectiveness of HIV prevention interventions and strategies. Funding states, territorial, and local health departments and community-based organizations (CBOs) to develop and implement tailored programs is CDC’s largest investment in HIV prevention. This includes longstanding successful programs and new efforts funded through the Ending the HIV Epidemic in the U.S. initiative. In addition to funding health departments and CBOs, CDC is also strengthening the HIV prevention workforce and developing HIV communication resources for consumers and health care providers. All of this is good news for those that are at greatest risk of contracting HIV/AIDS.
Now, all we need to do is to develop an initiative and intervention of the heart, an intervention that would eradicate issues of homophobia, stigma, and ignorance. Dr. King said it best when he said, “Through our scientific and technological genius we’ve made of this world a neighborhood. And now through our moral and ethical commitment we must make of it a brotherhood”.
Just recently in Colorado Spring, Colorado, five people were shot dead in a gay nightclub for no other reason than them being in what they thought was a safe space to be themselves and celebrate themselves and stand in their own light and truth. When I think of it, we’ve been so divided along so many different beliefs and ideologies we’ve forgotten the beauty of differences. You know what makes a quilt so beautiful—the different colors, patterns and patches all coming together.
It’s easy to point fingers at others and talk about something we don’t understand. It’s easy to critique and criticize but it takes courage to face our fears and phobias. What I’m talking about is loving one another, loving people, and trying to understand them at all costs. And the best place to start is by standing in our own light and loving ourselves and each other.
This World AIDS Day lets work towards developing a cure for homophobia, stigma, fear, and ignorance. Let’s come together to love and support anyone and everyone that has the courage to stand in the light and be seen as they are. There is this great song that I heard that says, “Stand in the light and be seen as we are, cause the greatest risk we’ll ever take is by far, to stand in the light and be seen as we are”. Just think of all those beautiful souls that have died because they didn’t have the strength, love, and support to stand in the light and be seen as they were. And just maybe, as we show our love and support of others, we too may get the courage to stand in our own light and be seen as we are.
The Many Perspectives of Type 1 Diabetes
What do you think about when you hear “type 1 diabetes?”
Type 1 diabetes (T1D) is a devious disease in that you may not notice symptoms until the autoimmune attack on your pancreas’ insulin-producing cells is already in full-fledged mode. And from that point on, you must take on the onerous task of mimicking the natural function of one of the body’s vital organs. Managing type 1 diabetes is both a 24/7 job and an inexact science. Many type 1 diabetics suffer in silence, constantly struggling to maintain a balance of blood sugar and insulin while dealing with the disruptive and draining symptoms of highs and lows.
My exposure to T1D began in 2015 when my mom was diagnosed with this once “juvenile” disease at age 61. But it really didn’t hit home until my then 13-month-old daughter was fighting for her life with diabetic ketoacidosis, a serious condition in which the body breaks down fat for energy, producing ketones and poisoning the body. My own diagnosis followed 8 months later in 2018. Needless to say, I have experienced T1D through the lens of both a patient and a caregiver. Perspectives can vary greatly depending on experience, age, education, peer influence, social media, etc. It’s interesting to see how even my own perspective of T1D has changed once I became an “insider.” Throughout the last 5 years, I’ve become more aware of myths and misinformation in the public space and on how others may view what you think is obvious.
What type 1 diabetes means to…
The misinformed | A type 1 diabetic | A caregiver of a type 1 diabetic |
---|---|---|
You just need to avoid sweets. | I have to consider everything I eat. There are even carbs in asparagus! | How do I calculate his insulin dose for that birthday cake?! |
It’s ok to “cheat” every now and then. | If I “cheat” I can end up in the ER. | If I don’t dose her insulin correctly, she could end up in the ER. Her life depends on me. |
You just need to take a shot or press a button before you eat. | Eating is a mathematical process—it involves counting carbs and figuring out how much insulin I need based on the meal and my current blood sugar. | Every meal involves math—weighing, calculating, and dosing. And if he doesn’t finish his food, then I’m scrambling to make up the carbs I already dosed for. |
You’ll grow out of it. It can be reversed. | I’ll have type 1 diabetes the rest of my life. My pancreas can no longer work the way it should. | I am her pancreas. She depends on me to replicate the functions of an organ! |
Just watch what you eat and exercise. | Everything affects my blood sugar: food, stress, hormones, sickness, waking up in the morning, the phases of the moon. | Blood sugars can be so unpredictable. I can do everything right, and still get it wrong. |
At Jumo health, we aim to educate in easy-to-understand ways to reverse misconceptions and support people living with a medical condition or caring for someone with a medical condition by empowering them with knowledge.
What type 1 diabetes means to…
A first-grade classmate | A first-grader with T1D |
---|---|
No fair, you get to eat candy and snacks during class. | I can’t always eat when I’m hungry, especially if my blood sugar is too high. |
Cool, you have an iPhone! | It is pretty cool that I have snapchat. But I have to carry my phone around wherever I go. |
You wear a funny thing on your arm. | None of my friends have to wear this on their arm. It reminds me that I’m different. |
You sure do beep a lot. | I get embarrassed when my continuous glucose monitor won’t stop beeping. |
You don’t have to take part in gym class if you don’t want to. | I want to play with my friends, but I have to sit out gym class and recess when my blood sugar is low. |
Why do you visit the nurse at lunch time? | How come none of my friends have to do these things? |
We use simple explanations and relatable stories so that children living with a chronic condition don’t feel alone, and we provide them with the tools and confidence to help them explain their condition to their peers.
Conclusion
Not all perspectives are one size fits all and neither are all educational needs. At Jumo Health we customize materials based on your needs, depending on your audience, age group, and culture.
As a type 1 mom of a type 1 child and senior medical writer at Jumo Health, what we do every day is personal, and I am grateful to be part of such an important mission.
So what does “type 1 diabetes” mean to me? In our household, it means sleepless nights, constant decision-making, endless worry, and no breaks from this relentless disease. But type 1 diabetes also means strength, courage, patience, resilience, compassion, and finding joy in life’s small moments.
Empowering Children With Education Through Clinical Trials
Introduction
In support of World Children’s Day 2022, ICON and Jumo Health have teamed up to share strategies to empower children every day through education, specifically in clinical trials.
Children are not small adults and therefore a medication dose cannot be cut in half and considered to be safe and effective for pediatric use. Although it may seem alarming, more than 70% of medications given to children have never been tested in the specific age population to determine the safety and efficacy profile. This is why we need clinical research– to bring safe and effective treatment options to children worldwide. In order for a medication to be approved for use by the FDA/EMA and other regulatory authorities, it must first undergo high levels of scrutiny, in clinical research. Children are a vulnerable population; however, they deserve the same rights to medication options as adults. We can achieve this by protecting children through clinical research, not from clinical research.
World Children’s Day
World Children’s Day is an annual day of action for children, by children. In order to achieve this year’s theme of “Inclusion, for every child,” it is essential to communicate to children in a way that they can understand. In healthcare this is especially important, as it can impact outcomes. Simple adjustments can make a significant difference on a child’s understanding of their diagnosis or treatment.
Participating in a clinical trial can bring up a variety of emotions, especially in children and adolescents. It is essential that care givers and parents work together to communicate to children in clinical trials and to support them in dealing with those emotions and understanding their experiences. Clear, consistent, and, perhaps most importantly, engaging communication and education are key to this support.
Communicating to Children in Clinical Trials
We recommend breaking down communication by age groups. Broadly speaking, the pediatric population can be segregated into 3 age brackets:
- Preschool and kindergarten
- Primary grades of 7-12 year olds
- Teenagers
Preschool and Kindergarten (2-6)
Children at this age are beginning to understand the emotions they are feeling, although as anyone who has parented a toddler knows, they still have very little control over those emotions. Simple tools can provide guidance to help young children interpret their own feelings and emotions and complex topics can be introduced using simple, character-driven narratives and social-emotional play. Child protagonists should drive the narrative as much as possible in order to make it easy for children to relate. Play-based learning allows children to explore and learn and helps them make sense of the world around them.
Digital exploration and play
It’s astounding to see the proficiency with which a child, sometimes even at 2 years old, can navigate his or her way around an iPad – this technology is now part of their world. In clinical trials we can take advantage of this new reality by engaging children in this space and driving retention with different digital solutions, including games, apps, and books.
Primary Grades (7-11)
Early readers begin to gobble up information on their own, becoming passionate about formats and topics they love. Fellow parents will attest, though, that even at this young age, children quickly become very discerning critics. Simply put: if they don’t like it, they won’t touch it!
Comic books
The strength of comics as an educational tool can be summed up with the 3 E’s: engagement, efficiency, and effectiveness.
- Engagement: Comics impart meaning through the reader’s active engagement with written language and juxtaposed sequential images
- Efficiency: The comic format conveys large amounts of information in a short time—vitally important when you are trying to whittle down a 200-page trial protocol into a short booklet
- Effectiveness: Processing text and images together leads to better recall and transfer of knowledge. Neurological experiments have shown that humans process text and images in different areas of the brain; this is known as the Dual-Coding Theory. These experiments also indicated that pairing an image with text leads to increased memory retention of both. With comics, children not only learn the material faster, they also learn it better.
Peer-to-peer communication
Kids want to hear from other kids in their own words. Direct, clear, honest peer-to-peer communication can offer clarity, empathy, and understanding. Video is an ideal medium for utilizing this method of communication with children in clinical trials.
Middle and High School (12-17)
Young people in middle and high school are all about independence—they want to own and customize information to meet their needs, habits, and interests. Self-expression becomes a priority and can serve as a buffer against the loneliness, everyday stressors, and poor self-esteem that can accompany those living with a chronic illness.
Abstract thinking is achieved around the age of 12 and is well developed by the age of 14. Reasoning also becomes more logical, and independence increases, including the autonomy of self-management over one’s illness, often with the support of digital tools. For this age group especially, it is important to include solutions for clinical trial engagement that harness the power of digital technology.
Teens also often seek a community of like-minded peers, and with the advent of social media, there has been the explosion of online communities where young people spend their time seeking support and advice. For teens living with chronic diseases or disabilities, these social networks can play a vital role in offering an understanding, empathetic community without stigmas and judgment. It is important to examine how those of us working in clinical trials can become meaningfully involved in these communities as well.
Communicating to Caregivers
Parents and caregivers seek tools that help them manage their hectic lives and connect and communicate better with their children.
Easy-to-use tools and mobile technology allow researchers to continue to put educational information and study support into the hands of families, and in doing so, greatly reduce attrition rates. The importance and relevance of this cannot be overstated, whether it’s a trial for a 17-month-old or a 17-year-old.
Trust and a close relationship between site staff, the parents, and the child are of crucial importance and have been shown to be major factors in parents agreeing to a clinical study and in being retained. High-utility, authoritative content builds trust and supports the trial site staff in developing this beneficial close relationship.
Effective and customized communication is vital to mitigating risks at every trial stage. It should be adapted to the developmental, social, and psychological variabilities among pediatric patients. There are various attitudinal factors amongst both adults and children that can lead to attrition, from distrust in research to worries about the disruption of daily life for parents and from feeling like a “guinea pig” to fear of risks for young people. At each trial stage these concerns can be overcome by using simple tools to ensure effective engagement and by adhering to these simple guiding principles: educate and inform, provide ongoing engagement, and show appreciation.
Conclusion
Children deserve medicines that are adapted to them and made for them. This can be realized by protecting children through clinical research. To engage children and theirs parents/care givers in clinical research, it is paramount to obtain their trust in research. This can be achieved by an open, respectful, effective, customized, age-adapted communication. Communication is fundamental and can be done by different means. Let’s use the tools available to engage children and their parents/care givers in clinical research for a better world for our little ones.
Jumo Health Honored in Inc.’s Inaugural Power Partner Awards
New Haven, CT – November 2, 2022 – Jumo Health, a global provider of age-appropriate, culturally sensitive medical education resources, today announced it has been recognized by Inc. Magazine in its inaugural Power Partner Awards. This new awards program honors B2B organizations across the globe that have received top marks from their clients and have proven track records supporting entrepreneurs and startups.
Out of the thousands that applied, the 252 winning companies received the highest scores based on their “commitment, reliability, trust, creativity, supportiveness, and other virtues that offer value to clients.” As part of the selection process, Inc. also conducted surveys among the applicant’s customers to gather testimonials to inform its decision.
“This achievement is particularly rewarding because it validates our organization’s core values and recognizes excellence in customer satisfaction,” shared Kevin Aniskovich, President and Chief Executive Officer of Jumo Health.
The Power Partner honor comes during the same year that Jumo Health ranked on the Inc 5000 list of fastest-growing private companies. Jumo Health has experienced exponential growth in recent years, primarily through its global clinical trial solutions. The company was founded to provide condition education for children and their families using comic books. In 2019, Jumo Health identified a need to address health literacy and serve traditionally underrepresented communities as they consider participating in clinical trials. Jumo Health now creates customized multimedia resources for all age cohorts and cultures to accelerate clinical trial enrollment and improve retention. Jumo Health serves an expansive customer base including the world’s top 10 pharmaceutical companies.
Jumo Health Supports Gala in Honor of Congresswoman Maxine Waters During the Congressional Black Caucus Annual Legislative Conference
New Haven, CT, September 29, 2022 – Jumo Health, a global provider of age appropriate, culturally sensitive medical education resources, is proud to be a sponsor of “A Gala Affair” in honor of Congresswoman Maxine Waters on Thursday, September 29, 2022. The Gala will celebrate one of the most powerful women in American politics today for her tremendous contributions to the people of the United States.
The event takes place during the Congressional Black Caucus’ 51st Annual Legislative Conference, which is the nation’s leading policy congress in Washington, D.C. This year’s Annual Legislative Conference theme is “Advancing Our Purpose. Elevating Our Power.”
In furtherance of its commitment to health equity, Jumo Health, in its partnership with I Choose Life Foundation, join together in recognizing the work and success of Congresswoman Waters in serving the community.
“A Gala Affair” will be held at the Grand Hyatt Hotel, located at 1000 H Street NW, Washington D.C.
About Congresswoman Maxine Waters
Congresswoman Maxine Waters is considered by many to be one of the most powerful women in American politics today. She has gained a reputation as a fearless and outspoken advocate for women, children, people of color and the poor.
Elected in November 2020 to her sixteenth term in the U.S. House of Representatives with more than 70 percent of the vote in the 43rd Congressional District of California, Congresswoman Waters represents a large part of South Los Angeles including the communities of Westchester, Playa Del Rey, and Watts and the unincorporated areas of Los Angeles County comprised of Lennox, West Athens, West Carson, Harbor Gateway and El Camino Village. The 43rd District also includes the diverse cities of Gardena, Hawthorne, Inglewood, Lawndale, Lomita and Torrance.
Congresswoman Waters made history as the first woman and first African American Chair of the House Financial Services Committee. An integral member of Congressional Democratic Leadership, Congresswoman Waters serves as a member of the Steering & Policy Committee and is the Co-Chair of the bipartisan Congressional Task Force on Alzheimer’s Disease. She is also a member of the Congressional Progressive Caucus, and member and past chair of the Congressional Black Caucus.
About I Choose Life Foundation
The mission of I Choose Life Foundation is to improve the health and well-being of the African American community through addressing health disparities in five interrelated areas: Cardiovascular disease, Diabetes, High Blood Pressure (hypertension), Mental Health, Obesity Cancers and STI’s. Drawing on its life-affirming culture, values, and internal resources; the community will become effectively informed, organized and will engaged in cooperative health care and prevention projects focused on choosing life and rejecting ideas and actions which lead to health deterioration and death. Learn more at www.ichoose-life.com.
About Jumo Health
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. We use familiar mediums to ensure this – from comic books and animation to virtual reality experiences and authentic documentary-style patient stories – all tailored based on age and audience. Jumo Health collaborates globally with more than 180 advocacy groups and community organizations to ensure an authentic patient experience is accurately represented. For further information, visit www.blog.jumohealth.com.