The National Multiple Sclerosis Society: Making MS Manageable

MS advocacy group provides a wide range of services that help patients manage the disease.

MS advocacy group provides a wide range of services that help patients manage the disease.

To see someone suffer can prompt people to do one of two things. We can allow that suffering to overwhelm us, perhaps even allowing ourselves to feel angry at the situation. Or, we can turn it into an opportunity to advocate for that person and do something positive in their name.

That’s exactly what Tiffany Jordan of the Southern California/Nevada Chapter of the National Multiple Sclerosis Society (NMSS) did when she became involved with the organization.

As Jordan grew up, she witnessed the progression of her mother’s multiple sclerosis (MS) and saw the toll it took on both her parents’ lives.

“I don’t recall her ever walking or anything like that. I have vague memories of her using crutches, but predominantly [she was] using a wheelchair my entire life,” Jordan recalled. “It had an impact on her ability to work and also on my father’s, because she required 24-hour care. That wasn’t something that we personally could afford, so my dad became her care provider, which had a huge financial impact on us as a family. It wasn’t easy.”

But Jordan stayed strong through it all. She said the experience has taught her much about responsibility and what it means to prioritize the things that are most important to you.

Her mother passed away from her struggle with MS in 2008, but her name lives on in Jordan’s dedication to the Southern California/Nevada Chapter of the NMSS. Jordan has worked with the chapter for 11 years and has been involved in a multitude of activities, including the MS Challenge Walk, a 50-mile walk from Carlsbad to San Diego in honor of patients with MS.

But the NMSS is about more than just fundraising and special events. It’s about patient care and ensuring that all individuals with MS get the treatment, information, and support that they need.

The society offers many services to patients with MS to help them along their journey with the disease.

“Across the nation, our biggest service that we offer is our MS Navigator Program,” Jordan explained. “Basically, anybody can call this number and you can be connected to what we call an MS Navigator. It’s a specialist in MS who can help answer or steer you towards answers to any questions that you may have, whether that’s guidance on insurance or disability, you were newly diagnosed, you’ve been diagnosed for 20 years. Anything. You can call and receive guidance and direction.”

Additionally, the society connects people with community resources through a Yellow Pages-type service provider list of local providers and nationwide providers who the NMSS can connect people to. These specialists range from neurologists to nutritionists and even contractors who can help renovate the home to make it more MS-accessible.

But perhaps the most important service that is provided by the NMSS is financial assistance.

“Every chapter across the nation has a financial assistance program and included in that is a scholarship program for kids who have MS or whose parents have MS to help them go to college,” said Jordan.

With medications costing an annual fee upwards of $39,000, it’s easy to see why that financial assistance is such an important service to be offered. MS is a lifelong disease, so the costs of disease modifying drugs, as well as other supplemental medications, never goes away. Many people are faced with difficult choices regarding long-term care versus short-term needs.

“There’s one of our MS advocates who was diagnosed in college,” Jordan said. “Her disease modifying drugs were $800 per month, so she had a choice to make of, ‘do I pay my tuition and my housing and eat? Or do I pay for the disease modifying drugs?’ She had to make decisions on what she actually could afford, and it can be really challenging to then, put your immediate needs against your long term needs.”

Stories such as this are not uncommon across the MS treatment landscape, so it helps to have an organization dedicated to easing the financial burden of those struggling to treat the disease.

“There are some bills in California right now that we’re trying to pass. One of them is AB339, and that one is focused on helping reduce out-of-pocket costs for prescription drugs,” Jordan explained. “One of the things is it makes it illegal for a specific type of drug that treats a specific type of disease to all be on a tier four (level of insurance).”

Another bill that the organization is working to pass regards step therapy, which involves trial-and-error-type treatment, forcing patients to take drugs they know will not work for them in order to access the drug their doctor thinks may actually work for them.

“Say a doctor wants to prescribe a specific drug, say they want to prescribe them copaxone. But the insurance company says before you give them copaxone, they have to try avonex and betaseron, and fail on those before you can give them copaxone,” Jordan explained.

The bill would allow doctors to more easily repeal decisions by insurance companies, allowing them to treat patients with the intended medication earlier and making patient adherence a nonissue.

The NMSS is also working to bring greater awareness to progressive MS, a form of the disease that is rarer and much more difficult to manage.

“It is a feeling that people with progressive MS have,” Jordan noted. “They have felt overlooked a little bit, and a lot of that comes down to the disease modifying drugs are meant for people who have relapsing remitting [MS]. So at this point there isn’t treatment for somebody who have progressive MS.”

The society hopes to raise awareness for this form of the disease by speaking with legislatures about progressive MS and by increasing research dollars that focus on progressive MS.

Since the launch of the NOW (No Opportunity Wasted) Campaign in 2010, the organization has raised more than $225 million to invest in research.

“Since the NOW Campaign started in 2010, the society has launched 779 new research projects including 25 commercial research partnerships and overcoming barriers to commercial development to propel promising new therapies; 71 clinical trials; 132 projects focusing on rehabilitation and wellness approaches; and 137 grants to train promising MS researchers,” Jordan said.

The Southern California/Nevada Chapter itself raises $2.5 million each year at Walk MS and engages more than 20,000 people in the activity.

“It’s our biggest fundraising event and also our biggest program because during that, we really focus on connecting people to each other and providing resources at this event as well,” Jordan said. “Usually we have a booth that we call the MS booth, and so there’d be information there about the disease and opportunities for people to connect with others, and we’ve even had doctors there so people can go in to ask questions while they’re at the event.”

As the manager of Client & Family Education at the Southern California/Nevada Chapter of NMSS, Jordan certainly has given her all to the organization over the past decade. With the millions of dollars raised for research and the continued efforts by advocates like Jordan to spread awareness and provide quality services to those in need, the NMSS gives many patients around the United States a beacon of hope.

To those who have just been diagnosed with MS, Jordan said, “Everybody has a different reaction when they’re first diagnosed and whatever your reaction is, it’s okay. And when you’re ready to reach out, the MS Society is here for [you] to help guide and direct you through the course of your life with MS.”