Linking the community

by Cyndi Zagieboylo

We are determined to eliminate multiple sclerosis, and we are working on pathways to cures of all kinds — stopping MS from getting worse, restoring lost function and ending MS forever.

One thing we know is that quick diagnosis and getting on a treatment that works means people do better — they have less disability. We have to get in front of MS early. People need to get started on an effective treatment as soon as possible to stop MS from taking hold. But too often, there are delays in diagnosis and treatment.

Neurological care for people with MS is a specialty. With all the treatments available now, there are options that need to be considered. Monitoring is required. Unfortunately, not everyone has access to an MS specialist. Many people are being diagnosed and treated by community neurologists who might not have the expertise, experience or confidence to prescribe and monitor the newest, most effective disease- modifying therapies (DMTs).

The National MS Society is connecting community neurologists with MS specialists so people don’t have to travel hundreds of miles to get the MS specialty care they need. Linking a community neurologist with an MS specialist can improve the speed and quality of care needed to get out in front of MS and minimize the damage caused by MS. One tried-and-true approach to do this is a hub-and-spoke model that sets up virtual clinics to connect MS specialists (the hub) with community neurologists (the spokes) to consult, provide expert opinions, discuss treatment options and provide support. Pilot programs called MS Project ECHO (Extension for Community Healthcare Outcomes) have shown promising success.

Kristen Clifford, vice president, healthcare access with the Society, says the program is more “tele-mentoring than tele-medicine.” The Society organizes and works with hub sites — partners in MS care and comprehensive MS centers — and recruits community neurologists who are treating people with MS. To that end, we are launching three hub sites in 2020 that will each have up to 12 spokes. We hope to expand these hubs and spokes across the country.

“We want to be sure we’re doing our part to connect community providers with MS specialists so they will have more knowledge and higher confidence in diagnosing MS, prescribing DMTs and knowing when to refer patients and when to treat patients themselves,” Clifford says. This in turn will help more people get diagnosed faster and started on DMTs earlier and will give them access to high-quality MS care in their own communities.

We need to get people plugged in early in their journey to all the resources available to minimize the effect of MS on their lives. They need to be diagnosed and to get on a treatment effective for them as quickly as possible. It is urgent that we reach them.

What are your thoughts about how we can connect earlier with people who have MS?

Cyndi Zagieboylo
President & CEO
National MS Society

Let me know your thoughts. Email me at cyndi@nmss.org.