Failure to obtain treatment often due to misconception that lack of symptoms means the disease is not progressing
May 8, 2001
Volume 1 - Issue 15
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 of the study 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%) 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% of the patients surveyed who were not on treatment – was that they hadn’t recently had a relapse. Numerous studies have shown that the disease is often progressing in terms of cognitive decline, brain atrophy, and number of brain lesions detectable by magnetic resonance imaging (MRI), even when there are no outward physical signs.
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% and 81%, 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 is available.”
The Effects of MS on Sufferers
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.
MS Can Also Have a Profound Social Impact
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 (MS) 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.
|Patients That Receive Treatment||58%|
|Patients That Do Not Receive Treatment||42%|
|I haven’t had a relapse in a while||44%|
|Drug reimbursement issues (Costs)||33%|
|Physician doesn’t feel I would benefit from treatment||31%|
|Reducing the number and/or severity of relapses experienced in a year||13%||19%|
|Slowing the overall progression of MS in terms of accumulation of physical disability||87%||81%|
|Losing a job due to physical disability||38%||26%||64%|
|Exclusion from active society||40%||23%||63%|
|Misinterpretations of cognitive impairment||39%||16%||55%|
|Losing a job due to cognitive impairment||36%||15%||51%|
|Perceptions of physical limitations||26%||23%||49%|
About Harris Interactive
Harris Interactive (Nasdaq: HPOL), the global leader in online market research, uses Internet-based and traditional methodologies to provide its clients with critical knowledge concerning the views, experiences, behaviors and attitudes of people worldwide. Known for The Harris Poll, Harris Interactive has 45 years of experience in providing its clients with market research and polling services including custom, multi-client and service bureau research, as well as customer relationship management services. Harris Interactive acquired the custom research group of Yankelovich Partners in February 2001. Through its U.S. and Global Network offices, Harris Interactive conducts research around the world, in multiple, localized languages, using its proprietary technology to survey its database of more than 7 million online panelists. For more information about Harris Interactive, please visit the Company’s website at www.harrisinteractive.com EOE M/F/D/V