Over the past 25 years, significant innovation has advanced the treatment of multiple sclerosis  (MS), addressing the frequency of relapses for this chronic neurological disease. But on a daily basis, the 2.5 million people living with MS worldwide still face many challenges associated with their disease.

Hoping to help address these persistent challenges, Celgene has joined with the chronic disease-focused, patient-empowerment platform Lyfebulb to launch the Lyfebulb-Celgene 2019 “Addressing Unmet Needs in MS: An Innovation Challenge,” which will provide $25,000 to one patient entrepreneur who is developing solutions to address an unmet need in MS. The goal of the initiative is to seek new solutions, beyond therapy, to help address either challenges faced by people with MS in their daily lives or an unmet need that could potentially improve outcomes and experiences for both people with the disease and their support partners.

To introduce this innovation challenge, Lyfebulb and Celgene hosted an event on January 24 in New York. The event featured a diverse panel which included a neurologist, MS patient and patient advocacy leaders who gave their perspectives on the current challenges in MS care and the evolving needs of patients, caregivers and clinicians.

Supporting Patient Entrepreneurs

While most people may not be familiar with the concept of “patient entrepreneurs,” Lyfebulb is hoping that will soon change. When Lyfebulb was founded in 2014, its founders wanted to empower patients and those who support them to become active participants in the search for solutions to issues associated with chronic diseases like MS. Lyfebulb provides these patient entrepreneurs with opportunities to take part in summits and challenges – like the Lyfebulb-Celgene 2019 Addressing Unmet Needs in MS: An Innovation Challenge – to help themselves and others impacted by the disease.

These entrepreneurs not only have the drive to improve their lives and the lives of those who have experienced MS firsthand, but also have inside knowledge of the problems that patients with this chronic disease face. Or, as Elizabeth Jones, a patient and an advocate, put it, “No one understands what it’s like to have MS other than another person who has experience with it.”

 

Needs Left Unaddressed

While it is essential to continue studying treatment for MS, patients and their caregivers have other daily challenges that need to be addressed, as well.

“Addressing physical activity and diet and having conversations around holistic care with clinicians—that wasn’t the case 10 years ago,” explained Tim Coetzee, Ph.D., chief advocacy, services and research officer at National Multiple Sclerosis Society and a panelist at the recent discussion. “We want to approach innovation holistically by looking for tools that are useful not just to those who want small bites, but also to those who want it all.”

For instance, 28 percent of people with MS surveyed in one study said that psychological support was their most significant unmet need. “I lived in denial for years—I didn’t tell my friends or coworkers that I had a chronic illness,” Elizabeth Jones said during the panel. “I really needed to connect with people.”

Like people with MS, caregivers also experience high levels of stress and are often referred to as the “hidden patients” of the disease. But now, we’re seeing increased awareness of the burden of the disease on caregivers, according to Amanda Montague, Ed.M., vice president of Education and Healthcare Relations at the Multiple Sclerosis Association of America.

“We’re seeing a focus on the holistic experience of MS and bringing care partners into conversations,” she said during the panel discussion. “I’m excited to see innovations that incorporate care partners in both clinical and home settings.”

No one understands what it’s like to have MS
other than another person who has it.

Overcoming Information Overload

During the discussion, panelist Darin T. Okuda, M.D., M.S., director of the Neuroinnovation program and director of the Multiple Sclerosis & Neuroimmunology Imaging program at the University of Texas Southwestern Medical Center in Dallas, explained that because every individual with MS has a different experience of the disease, there are many opportunities for innovation to improve the lives of patients.

As an example, Okuda explained that he realized patients were coming to their appointments with him often feeling overwhelmed by the amount of information available on the Internet about their disease and confused by which resources to trust.

So Okuda and his team developed an app, called Pre-Meet: Multiple Sclerosis, to help patients prepare and focus on what is essential before appointments with their MS specialist to make the most of those visits. The app lets them know what to expect during their exam and understand the next steps following the appointment.

 

“Responsible and reliable content is key,” Okuda said. “When a patient has way too much information, we often find that they define themselves by their disease, which we don’t want them to do.”

While all the panelists at the event brought their own unique perspectives and priorities to the discussion, they all agreed that the MS space is ripe for innovation and that those directly impacted by the disease – patients, caregivers and experts in the field – can lead the charge.