Many Multiple Sclerosis Patients Are Not Getting Adequate
ROCHESTER, NY -- May 8, 2001 -- Despite the availability of drug
therapies that can effectively slow the progress of this debilitating
disease, large numbers of patients diagnosed with multiple sclerosis
(MS) are not receiving treatment. This is according to a new study of
MS patients and neurologists commissioned by Biogen, Inc. and
conducted by Harris Interactive. The results are being released today
during the 53rd Annual Meeting of the American Academy of Neurology.
According to the study, more than four out of ten (42 percent) MS
patients who participated in the survey were not taking any of the
medications approved by the Food and Drug Administration (FDA) for
the treatment of MS. Older patients and those diagnosed with MS at
least five years ago were even less likely to be taking drug therapy.
This is despite a substantial body of evidence demonstrating the
effectiveness of these medications, as well as a recommendation by
the National Multiple Sclerosis Society that all patients with the
most common form of MS should be on medication. Many MS patients who
go without treatment appear to do so because of a mistaken belief
that in the absence of outward signs of disease activity, the disease
is not progressing
The most common reason given for not receiving treatment -- cited by
43 percent of the patients surveyed who were not on treatment -- was
that they hadn't recently had a relapse. Numerous studies have shown
that even when there are no outward physical signs, the disease is
often progressing in terms of cognitive decline, brain atrophy, and
number of brain lesions detectable by magnetic resonance imaging
(MRI). Patients do believe that slowing the progression of physical
disability rather than reducing the number of relapses should be the
main objective of therapy -- as do the vast majority of neurologists
(87 percent and 81 percent, respectively). But the mistake many
patients seem to make is that they assume that the absence of
relapses indicates a lack of disease progression and the
corresponding physical and mental decline.
"Given the current state of treating this disease, too many MS
patients are not receiving treatment that they could benefit from.
The tragedy is that because they feel relatively healthy, they don't
think they need it - even though the disease can be causing physical
and cognitive decline in the absence of symptoms," according to
Robert Leitman, Group President, Health Care, Education, & Public
Policy at Harris Interactive. He continued, "The study demonstrates
that many of these patients were diagnosed with MS before treatment
that could actually slow the course of the disease was available.
Efforts should be made to reevaluate these patients as candidates for
therapy, now that therapy that addresses more than just the symptoms
Multiple sclerosis is a chronic, often disabling, disease of the
central nervous system that is most likely to affect women and those
between the ages of 20 and 40. Symptoms may be mild (such as numbness
in the limbs), or severe (such as paralysis or loss of vision). In
addition to the physical effects of MS, those stricken by the disease
often suffer cognitive decline. In fact, more than two-thirds of
those surveyed said that they had experienced cognitive impairment
such as short-term memory loss, problem-solving difficulties, or
problems processing information.
A large portion of those diagnosed with MS feel they are stigmatized,
expressing fears that they could lose their job or be excluded from
active society if others became aware of their condition. Nearly four
out of ten patients surveyed said that they had lied or failed to
disclose their diagnosis to family members, friends, or colleagues
because they feared what would happen if people knew they had MS.
Additionally, four out of ten MS patients surveyed, who were not
currently in a long-term relationship, said their diagnosis has had a
major impact on their outlook about marriage and long-term
relationships. And, at least a third of those surveyed reported that
their diagnosis had a negative impact on their personal
relationships. Fully half said that they had stopped working on
account of their MS.
Not long ago, people diagnosed with multiple sclerosis had few
treatment options beyond those that could alleviate the symptoms of
the disease. In the last decade, however, drugs have been developed
that not only lessen the frequency and severity of flare-ups or
exacerbations, but more significantly alter the natural course of the
disease, slowing the progression of physical and cognitive disability.
The Medical Advisory Board of the National Multiple Sclerosis Society
has recommended that therapy be initiated for MS patients as soon as
possible following a definite diagnosis of relapsing-remitting MS,
the most common form of the disease.
This Harris Interactive study was conducted online during April 2001
with 562 patients who were diagnosed with relapsing-remitting or
secondary progressive MS, and 251 neurologists who treat patients
with MS. The neurologist sample was designed to be representative of
all neurologists who practice in the United States. The neurologist
questionnaire averaged approximately 13 minutes in length and the
patient questionnaire approximately 17 minutes in length.
SOURCE: Harris Interactive