Advocates on your side
Navigating the complexities of MS-related healthcare can be daunting, but specialists can help you find your way.
by Marcella Durand and Paul Wynn
When questions arise about treatment options, care plans, medical bills or insurance claims, many people like to dig in and research the matter themselves. After all, individuals are often the strongest advocates for their own needs. But sometimes, the reality of living with multiple sclerosis, and managing all the clinical and financial aspects of it, can feel overwhelming. In those instances, people with MS may turn to doctors, family members—maybe even Google—for answers. But when that’s not enough, where else can you look for help?
As it turns out, there are numerous advocacy resources for people with MS. Each type of advocate may have a different expertise, but together, they can help you connect to financial, medical and wellness resources; find the right healthcare providers; research treatment options; participate more actively in your healthcare; manage medical bills; and navigate health insurance concerns, such as filing claims and challenging denials.
Chief among these sources of support are nonprofit organizations, such as the National MS Society, with staff and volunteers trained to field a range of inquiries. Others include nurses, nurse practitioners and social workers at MS centers or hospitals, and patient advocates for hire. Even some pharmaceutical companies offer patient assistance services, primarily to help people pay for a treatment or get it covered by health insurance.
Many people find these resources especially helpful when they are newly diagnosed, but these services also help to fill the gaps in America’s complex healthcare system, according to Vicki Breitbart, director of the Health Advocacy Program at Sarah Lawrence College in Bronxville, New York. “With all of the significant changes happening in healthcare, most recently with the Affordable Care Act (ACA) and the national and state healthcare exchanges, there is increasing need for help to navigate these uncharted areas,” she says.
A healthcare compass
For these reasons, more than 200,000 people living with MS call the Society’s MS Navigator® program each year. Trained MS Navigators are ready to assist people in all stages of the disease, from the recently diagnosed to those addressing life changes brought about by MS progression. Navigators are available not only to people with MS, but also to family members, co-workers, friends or anyone else affected by the disease.
“We can assist callers in their ability to self-advocate for their rights, and connect people with the agencies and organizations established to serve people living with a disability,” says Carla Turechek, an MS Navigator. Turechek says Navigators can help people access optimal MS healthcare now, and plan for the future.
In addition to helping people find healthcare professionals with experience in MS care, Navigators frequently handle questions about the complexities of employment, financial and insurance matters, such as Medicare and Part D plans; insurance appeals; the ACA and the insurance marketplace; Social Security Disability Income (SSDI) and private disability plans; and employment accommodations and discrimination.
In a recent call, a woman with MS who was new to Medicare had questions about which prescription drug plan she should choose and what supplemental policy would work best for her. An MS Navigator was able to help the caller narrow down her options and also directed her to several resources to help with her out-of-pocket costs. The woman later called back to say that not only did her new coverage meet her needs, but she was able to get assistance with premiums and medication costs. “She said she expected that her monthly healthcare costs would be cut in half,” Turechek says.