Treatment innovations have radically changed what it means to live with multiple sclerosis. But before many patients can battle their disease, they must fight to gain access to these innovations.
“It’s not so much that the MS is exhausting — it is exhausting — but (it’s) the battles you have to surmount when it comes to health care and insurance and getting proper treatment,” explains author Jamie Tripp Utitus, whose writing career began with an MS diagnosis.”They take you and put you on hold. It’s limbo.”
Utitus, who blogs about her experiences at “Ugly Like Me,” hears similar stories from MS patients, who like her, have faced complex approval processes and confusing insurance formularies.
“Medications can only change lives if people can access them,” the National Multiple Sclerosis Society explains on its website. “MS medications have transformed the outlook for relapsing MS over the last 20 years. Yet, many people living with MS cannot access the medications they need.”
An unpredictable autoimmune disorder, multiple sclerosis affects every patient differently. It can take time for a patient to find the treatment that is right for them.
When patients living with MS are delayed access to MS treatments, it can make their symptoms worse. A patient who would otherwise be able to continue working might find the pain and exhaustion unbearable. That’s under the best case scenario. Far too often, treatment delays lead to a disease progression that further diminishes a patient’s quality of life.
“It took us over a month from the time my MS medication was prescribed to the time it was shipped to me,” one patient shared with the National MS Society. “We had to personally coordinate between the physician’s office, the insurance company, the specialty mail order pharmacy our plan requires us to use for this drug, another group our insurance uses to complete prior authorizations, the regular mail order pharmacy for our insurance, and the manufacturer’s finance department.”
The National Multiple Sclerosis Society helps patients living with MS through its comprehensive nation-wide network of services. Last year, the Society invested $54 million to advance more than 380 research projects around the world.
In addition to its investment in research, the organization has worked to tackle access problems. It convened a group of patients, caregivers, doctors and health care providers to identify ways to eliminate these barriers to access.
After surveying more than 8,500 patients living with MS, the Advisory Committee on Access to MS Medications offered a reform platform focused on affordable, simple and transparent solutions. Here are just 3 of the committee’s recommendations: