A task force on multiple sclerosis is being appointed in New Jersey to tackle the challenges of this chronic, often disabling, disease.
Multiple sclerosis advocates are looking to the task force to tackle such issues as access to treatment and drugs, strategies for remaining employed, and the need for more community services to help people with MS avoid moving to nursing homes.
A law enacted in January created the 14-member MS task force to prepare a report on its findings and recommendations to Gov. Chris Christie and the legislature over the course of 12 months.
Members "will identify and address the unmet needs of the people living with MS," said Pamela Trosino, who was diagnosed five years ago. "It will bring together public officials, people with MS, and people who care for people with MS."
Sen. Fred H. Madden (D-Camden, Gloucester), a member of the Senate's health committee, spearheaded the legislative effort. "Each year I take a disease and study it and try to make life better for people afflicted with that disease," he said.
His interest in helping the estimated 14,000 NJ residents with MS grew from participating in a walk to raise money organized by the National MS Society, Greater Delaware Valley chapter. "As a result of seeing the challenges, the way of life that many people with MS go through, I developed the concept of putting this task force together."
Members will bring together "subject matter experts and stakeholders, with the understanding that New Jersey will move forward to advance measures to help these individuals and their families," Madden said.
A chronic neurological disease, MS can lead to total physical disability, and can severely impact vision and cognition. The task force legislation provides that the panel will include individuals who have MS, neurologists, and one member each from the two chapters of the National Multiple Sclerosis Society that serve New Jersey: The New Jersey Metro chapter and the Greater Delaware Valley chapter. Two state departments, health and human services, will have representatives on the task force, and other members will be appointed by Christie and by the legislature.
Together, they will work to "put on the statewide radar screen the issues that people with MS are dealing with," said Karen Mariner, vice president of client and community services for the Greater Delaware Valley chapter.
Advocates are looking for a number of outcomes, including "how can we work to ensure as a state that these people are getting the care and the treatment that they need," said Stephanie Hunsinger, advocacy manager for the New Jersey Metro Chapter of the national MS society.
Trosino is a former marketing executive who is no longer able to work because of MS. She lives with her husband in Tabernacle, Burlington County, and although she can walk unassisted, she said the disease has impaired her vision and cognition.
As soon as she was diagnosed, Trosino began using her research skills to learn all she could about the disease. She has been able to significantly improve the quality of her life through physical therapy, medication and by keeping her mind active by volunteering for the Greater Delaware Valley chapter. She helps raise money by leading MS walks, and makes phones calls and does writing on behalf of the chapter. She is hopeful the new task force will lead to "greater access to better therapy and treatment."
MS drugs are expensive, and "for our population it's not so much an issue of not being insured, but being underinsured," Mariner said. Most diagnoses are made between ages 20 and 40, "just as individuals are starting a career and a family."
Mariner would like the task force to look at ways to keep people with MS in the work force. For example, finding ways for a lawyer to be trained in a comparable position that makes use of the individual's education, she said. "That person could be doing something closely aligned to what their previous career path was, but they just need a different set of accommodations and work strategies to be successful."
Staying employed is a major issue, said Hunsinger. "Maybe they can't do the job that they were doing, but have a skill set to allow them to do another job and continue to work."
Because people tend to be diagnosed with MS as young adults, "we have a large population of individuals with MS who are moving into nursing homes in their 40s and living in nursing homes for 20 or 30 years," Hunsinger said. She is hopeful the task force will "look at services that could be provided to allow people to stay in the community and remain active members of the community."
According to Madden, the task force will give the MS community a voice "and direct access to the government bodies that are in decision making positions." The members are expected to be named by June.