What MS Patients Are Missing
Many aren't taking needed drugs, poll shows
FRIDAY, May 11 (HealthScout) -- Many people with multiple sclerosis aren't taking drugs that can slow, halt or even reverse the progress of the disease, according to a new poll released this week.
A probable reason? Many were diagnosed before anyone found out whether the drugs worked well, and the patients may simply not know they are compromising their health.
In the last five years, researchers have studied Avonex, Betaseron and Copaxone and figured out that, depending on the drug, weekly or daily doses can prevent the damage to the brain and the rest of the nervous system that characterizes MS, according to Dr. Lawrence Jacobs, head of neurology at the Buffalo General Hospital in New York.
Of MS patients who were diagnosed with the disease more than five years ago, 49 percent are not taking drugs, the poll said; of those diagnosed within the last five years, 26 percent are not taking medication. The poll was done by Harris Interactive.
"The whole idea is to prevent spells, to prevent the accumulation of disability over time," Jacobs says. Tests can reveal damage to the brain after a single symptom of multiple sclerosis, he adds, and that's when he recommends a patient begin medication.
"Damage can be irreversible by the time you get to the second spell. The patient already has cognitive losses and shrinkage of the brain, which is irrevocable," he says.
A problem specific to MS is that patients' brains can be deteriorating without any symptoms, Jacobs says. And in fact, the Harris poll's No. 1 reason for patients not taking medication was that they hadn't had physical symptoms of the disease. But in an 18-month-period, Jacobs notes, a patient could have as many as 60 new damaging brain lesions and not be aware.
"If they haven't relapsed or been highly symptomatic, their sense is that the treatment isn't really needed," says Bob Leitman, group president for Health Care, Education and Public Policy for Harris Interactive.
Between 250,000 and 350,000 Americans have MS, which produces symptoms ranging from numbness to paralysis. The ability to send signals from the brain to the rest of the body is weakened because myelin, which acts as an insulator for nerve cells, is progressively destroyed.
The Harris poll interviewed 562 MS patients and 251 neurologists who treat MS patients. In addition to the patients who weren't taking drugs because they didn't have physical symptoms of the disease, 32 percent said they couldn't afford the medicine. And 31 percent said their doctors didn't feel the treatment would be helpful.
What exactly that means is unclear, Leitman says. A great majority of doctors -- 81 percent -- said it was important to slow the progress of the disease. But only 43 percent said they begin treatment once the disease is diagnosed, typically after two physical flare-ups have occurred.
Education of both doctors and patients may be needed, Leitman says. At the very least, Jacobs adds, doctors need to spend more time explaining the latest research to patients and what it can mean to them.
"The way to get proper compliance is to spend time with patients at the beginning," Jacobs says. "It's critical to realize these medicines are approved in the U.S. for MS -- and they work."
The patients' knowledge of the disease in general was somewhat fuzzy, according to the poll's findings. While 95 percent of the patients understood MS can lead to cognitive impairment, only 61 percent knew that it can lead to actual brain shrinkage or atrophy. That's the kind of information that patients need in order to make good choices about treatment, Jacobs says.
"At least they can know the risk," he adds.
Finally, the poll revealed that the disease affects patients' entire lives. About 40 percent hid the news of their diagnosis from friends, family and colleagues, mainly from a fear they would face discrimination. And their fears weren't entirely unjustified, Leitman says. Of the patients, 36 percent found the disease had had a negative impact on their personal relationships; 49 percent had stopped working, although it wasn't clear whether that was because of discrimination or because they could no longer function in the job.
The progress made with the new drugs may mean huge changes in the future prospects of new MS patients, Jacobs says. The image of the person in the wheelchair may disappear. But for now, he adds, he still gives the same advice to all his patients. Talk with the medical staff, confide in your doctor and his staff -- not in your girlfriend.
"I tell them not to discuss it with too many people," Jacobs says.
What To Do
For general information on multiple sclerosis, try the National Multiple Sclerosis Society. And the National Institutes of Health has more, including news on the latest research and treatment methods.
For more reports on studies of MS, try HealthScout.