MS Insurance Advisory Committee: Washington State Neurologists Demonstrate Advocacy in Action

August 21, 2008


By Eugene F. May, MD, FAAN

Author Disclosure

When insurance companies attempt to cut costs and restrict access to care, people with multiple sclerosis (MS) often become neurologists' most vulnerable patients. Treating MS is very expensive, and insurance costs usually rise as MS patients become more physically and cognitively disabled. When insurers restrict their medication and other MS–related treatments, patients often turn to their neurologists first. In response, neurologists find themselves on the front lines, calling and writing letters to insurance companies in an attempt to circumvent and even eliminate rules that may deny their patients treatment.

Insurance Advisory Committee Advocates for MS Patients

MS patients and their physicians in Washington State now have a resource that can help. The Insurance Advisory Committee of the Greater Washington and Inland Chapters of the National MS Society (IAC), created in 2007, offers an effective advocacy organization for MS patients and neurologists. With help from the IAC, the Chapters have begun to streamline the process of identifying care access problems and effectively circumventing those problems.

Ongoing physician input to the committee is critical: AAN members Lily Jung, MD, FAAN, and Jim Bowen, MD, have joined me on the IAC. Together with MS patients, the National MS Society Board members, and other committed volunteers, we are dedicated to the goal of making the IAC active and effective.

The IAC has performed several important steps in meeting its goals:

  • Identification—We established an accurate process to identify problems with the system, asking, "When are MS patients being denied appropriate care because of the regional insurance provider's policies?"
  • Definition—Subsequent actions have sought to define such problems in more depth and then rectify them.
  • Action—The committee has also developed an action plan to help ease providers' restriction of care.
  • Education—The committee worked on methods to educate important community stakeholders about MS, with particular emphasis on the importance of allowing MS patients full access to care.

Since education is key to the success of the IAC's projects, we have worked with a number of regional neurologists, physiatrists, and MS-specialty nurses to draft consensus statements about the treatment of MS and about specific MS symptoms. These consensus statements will be used in handouts at future meetings, and will be available for reference online.

Educating Human Resources Administrators

One of the most successful events arranged by the IAC was an April 2008 luncheon for Human Resources (HR) administrators in Puget Sound companies. The luncheon was held to educate administrators about MS by highlighting the difficulties faced by patients with MS in the workplace. We also spent time seeking information and ideas for educating HR administrators in ways to help clients with MS.

The session proved extremely valuable for the hosts and guests alike. Based on the feedback we received, the attendees learned a lot about MS, having gained insight into the needs of their employees with MS as well as those with other disabilities. At the same time, we learned to use the resources of Employee Assistance Programs already present in larger companies, to assist with the needs of MS patients.

Based on committee members' conversations, it is clear that confidentiality issues remain a significant barrier preventing patients with MS and other conditions from seeking assistance in the workplace. Also, since decisions about employee access to medical insurance are most often made at the executive level (with little input from HR departments), we agreed that executives should become a target group for further education. The committee plans on providing more educational opportunities for this sector of the business community.

Future IAC Activities

The IAC has developed several upcoming events. As part of a major activity, the committee will approach regional insurance companies directly. Our goal will be to educate company executives about how managing MS differs from managing other chronic neurologic and medical illnesses. In turn, we hope to learn what hurdles the insurance companies perceive in financing care for MS patients. We will try to work with them to overcome these hurdles creatively.

Committee members will also take part in other events that foster cooperation with regional insurance providers. The ultimate goal of our meetings with providers is to afford MS patients equal access to all medical treatments and other therapies. In all cases, treatment should be provided at the discretion of the patients' neurologists, in concordance with the National MS Society Expert Opinion on Disease Management.

In summary, neurologists actively involved in the Insurance Advisory Committee of the Greater Washington and Inland Chapters of the National MS Society make up a broadly representative group of committed volunteers. The committee has established itself as the regional expert on MS care, and is reaching out to important stakeholders who are involved in the decision-making process about MS patients' access to care.

By obtaining and disseminating information—as well as advocating for our patients—we hope to ensure that decisions about the treatment of people with MS remains economically sound, driven by personal choices on medical issues.

Find out more about the Greater Washington and Inland Chapters of the National MS Society.

Author Disclosure

Dr. May has nothing to disclose.