Multiple Sclerosis Express Report
A Report for Consumers


MS Patients and MS Drugs Therapy: The Need to be More Informed


William H. Stuart, MD, Medical Director, MS Center of Atlanta, Georgia

It is difficult to understand the many reasons listed in the Harris Survey regarding failure to treat MS patients with disease-modifying therapy. MS patients have come out of a long period where adequate therapies were not available. Existing therapies and new therapies in development-used singly and in combination-have shown and will continue to show increasing benefit in disease modification. It has been 8 years since the first FDA-approved drug for the treatment of MS was made available. The percentage of patients on treatment has risen some during that period of time (and after the initial enthusiasm), but it has not shown the steady increase in usage that would substantially affect the adverse demographic outcome in multiple sclerosis. Of the many reasons listed, some are understood. The desire of patients not to take medication while they are asymptomatic has some personal merit, but it does not have medical merit. The physician's attitude not to treat because of the relative efficacies of these drugs is also without merit.

The "silent period" of an MS patient's life-that is, the period between relapses or without progression-is perhaps the most dangerous period of the MS experience. Failure to treat during this opportune time, when most of the pathologic activity is responsive to the newer medications, represents a failure on the part of patients and physicians to recognize the newly understood pathology of multiple sclerosis. Studies have indicated that as much as 80% of MS activity is clinically silent, and increasingly, the relapse events that are noted may not be the best indication of disease progression; brain atrophy and the increase in T-2 lesion load may be better indicators.

The neurologist's decision not to treat based on limited efficacy of the medication fails to take into account that when the slope of disease modification in terms of silent pathological accumulation is plotted against a life curve, the duration of time to severe disability is significantly altered. When this dynamic is explained carefully to patients, they invariably are more favorable toward early treatment.

Beyond these factors listed in the Harris Survey, there is another overriding reason for this treatment statistic to be so low. The socioeconomics of medicine have changed substantially. To engage with patients in the explanation and monitoring of complicated, chronic diseases is time consuming. Furthermore, to engage initially is an expression of a willingness to engage further when and if these drugs are not totally effective. These factors often make it impossible for the treating neurologist to spend adequate time with the patient and explain the pathophysiology of multiple sclerosis and how it can be effectively modified.

Regardless of the reasons, it would appear that if this problem is to be solved, it is going to require extensive input into patient and physician education and the acquisition of additional support systems to help both implement care. The end result is worth these efforts and will almost certainly result in a change in the demographics of multiple sclerosis.

Harris Survey Reveals That 42% of MS Patients Are Not Being Treated With Disease-Modifying Therapy

By now, it is no longer news that drugs are available that can slow the progression of multiple sclerosis (MS) and reduce the number of relapses. But there is news from a recent survey showing that at least four of every 10 MS patients are not being treated with disease-modifying therapy, despite the wealth of evidence demonstrating its effectiveness and despite a recommendation by the National Multiple Sclerosis Society that all patients with relapsing-remitting MS be on these medications.

The survey, conducted online by Harris Interactive, included MS patients and neurologists. The most dramatic finding was that 42% of patients with MS are not being treated with any of the three medications currently approved by the US Food and Drug Administration for the treatment of MS (Avonex, Betaseron, and Copaxone [interferon beta-1a, interferon beta-1b, and glatiramer acetate, respectively]).

Interestingly, people diagnosed with MS more than 5 years ago are much less likely to be receiving treatment with these drugs than people diagnosed more recently. Only about half of patients diagnosed before 1996 are receiving treatment compared with 73% of those diagnosed between 1996 and 2001. These results suggest that MS patients diagnosed before 1996 should be the focus of education about the benefits of treatment.

"This study demonstrates that many of these patients were diagnosed before treatment that could actually slow the course of the disease was available," said Robert Liftman, Group President, Health Care, Education, & Public Policy at Harris Interactive. "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 survey, commissioned by Biogen, Inc., and conducted online during April 2001, included 562 patients who were diagnosed with relapsing-remitting or secondary progressive MS and 251 neurologists who treat patients with MS. The sample of neurologists was designed to be representative of all neurologists practicing in the United States. The neurologist questionnaire took approximately 13 minutes to complete, and the patient questionnaire took about 17 minutes.

The results of the survey suggest that patients mistakenly believe that MS is not progressing if there are no obvious symptoms. This assumption is contrary to results of recent research showing that MS continues its silent progression, as evidenced by new lesions on MRI scans, brain atrophy, and cognitive problems, whether or not patients are experiencing symptoms or relapse.

According to survey results, many MS patients who are not being treated believe that treatment is warranted only if they have symptoms. Forty-three percent of patients who were not being treated said that the reason they were not on treatment was because they had not recently experienced a relapse. Other important reasons cited for not being on treatment were "drug reimbursement issues (cost)," cited by 32%, and "physician doesn't feel I would benefit from treatment," cited by 31%.

Factors Influencing the Decision to Be Treated

Among patients who were being treated, the leading influences on selecting treatment were physician advice (cited by 88%) and perception of treatment efficacy (cited by 81%). These results, coupled with the fact that 42% of MS patients surveyed are not being treated with disease-modifying therapy, suggest that physicians need reinforcement about the importance of initiating treatment in patients with MS.

Both physicians and patients agree (97% and 98%, respectively) that the most important reason for treatment is slowing the overall progression of physical disability associated with MS. Ninety-eight percent of patients said that the ability to slow the overall progression of disease was extremely/very important, and the ability to reduce the number of relapses per year was deemed extremely/very important by 96% of physicians and 93% of patients surveyed.

When asked specifically about which was more important, slowing the progression of physical disability or reducing the number of relapses, the overwhelming majority of patients (87%) and physicians (81%) agreed that slowing the progression of physical disability was more important.

Social Impact

It is well known that having MS affects patients' self-perception and leads to social and vocational stigmatization. MS is a source of problems in intimate relationships, in social relationships, and at work. The survey revealed more specific information about the social impact of the disease.

One major finding was that four of 10 patients diagnosed with MS have lied or failed to disclose their diagnosis to family members, friends, or colleagues because they feared the consequences of such disclosures. Forty-nine percent believed that knowledge of their diagnosis would lead to being excluded from active socializing. Sixty-four percent of patients believed they would be perceived as having physical limitations if their diagnosis were known, 63% were concerned about misinterpretations of cognitive impairment by others, and more than half were worried about losing a job due to cognitive impairment or physical disability.

Slightly more than one third of those surveyed reported that having MS had a negative impact on their personal relationships. Four of ten respondents said that their diagnosis has had a major impact on their outlook on marriage and long-term relationships. Half of the MS patients have stopped working, and more than two thirds (seven of 10) said they had experienced cognitive impairment, including short-term memory loss and difficulty in problem-solving and processing information.

Timing of Treatment Initiation

According to survey results, 43% of physicians initiate treatment at the time of diagnosis, 26% at the first demyelinating event, and 24% at the second demyelinating event (7% answered "other"). These results are interesting in light of two recent studies demonstrating that initiation of disease-modifying therapy after the first demyelinating event was significantly superior to no treatment in patients with MS (Jacobs LD et al. Intramuscular interferon beta-1a therapy initiated during a first demyelinating event in multiple sclerosis. CHAMPS Study Group. N Engl J Med 2000;343:898; Comi. ETOMS: Results and implications for the management of patients. Presented at ECTRIMS, September 6-9, 2000, Toulouse, France). Although both studies support treatment very early in the course of MS, apparently this knowledge has not filtered down to the general neurological community.

Most physicians (84%) in the survey believed that early initiation of treatment is very beneficial/somewhat beneficial for delaying the progression of cognitive deterioration and brain atrophy. Even though 82% of physicians said it was extremely/very important to delay the onset of clinically definite MS after one demyelinating event, only 26% reported prescribing disease-modifying therapy at that time.

Overall, physicians were more aware than patients of the importance of adherence to therapy. Sixty-five percent of patients stated that adherence was extremely/very important, compared with 94% of physicians.

Therapy Considerations

Of the 58% of patients currently on disease-modifying therapy, 49% were taking Avonex (interferon beta-1a, Biogen, Inc.), 20% were taking Betaseron (interferon beta-1b, Berlex Laboratories), and 27% were taking Copaxone (glatiramer acetate, Teva Neuroscience) (4% were on other therapy). About half of the neurologists surveyed said there were no significant differences between the three MS drugs in several clinical areas.

Among physicians who believed that these drugs had differences, 51% said that Avonex was the most effective in slowing the progression of sustained physical disability compared to 27% for Betaseron and 22% for Copaxone. Fifty-seven percent said that Avonex was the most effective in slowing cognitive loss compared to 26% for Betaseron and 16% for Copaxone. Avonex was also felt to be the best choice for preventing brain atrophy by 57% of neurologists, compared to 29% for Betaseron and 14% for Copaxone.

Of neurologists who believed there was a difference between the three disease-modifying agents, there was a perception that Avonex and Betaseron (37% and 43%) were most effective in reducing the number of relapses (compared to 20% for Copaxone). A similar perception was reported regarding reduction of the number of brain lesions as seen on MRI (Betaseron, 46%; Avonex, 42%; and Copaxone, 13%).

Regarding convenience, Avonex was deemed the easiest of the three drugs for patients to use by 76% of the almost 90% of neurologists who cited differences among the drugs in this category. Eighty-four percent of physician respondents said there was a difference among the three drugs in enhancing patient compliance, and 80% of those physicians said that Avonex was the best drug for this purpose.


An interactive, online survey of patients with MS and neurologists revealed that there is a gap between evidence-based medicine and clinical practice. It is now well established that MS continues its relentless progression even in the absence of symptoms. Large, well-designed studies have clearly shown that treatment is indicated in patients with relapsing-remitting MS and is beneficial when initiated early in the course of disease-after only one demyelinating event. Taken together, the results of this survey are a call to action for further education of patients and physicians about the importance of early therapy in MS.

More information about the survey can be obtained online.

For Further Reading

IFNB Multiple Sclerosis Study Group. Interferon beta-1b is effective in relapsing-remitting multiple sclerosis. I. Clinical results of a multicenter, randomized, double-blind, placebo-controlled trial. Neurology 1993;43:655

Paty DW, Li DK. Interferon beta-1b is effective in relapsing-remitting multiple sclerosis. II. MRI analysis results of a multicenter, randomized, double-blind, placebo-controlled trial. UBC MS/MRI Study Group and the IFNB Multiple Sclerosis Study Group. Neurology 1993;43:662

IFNB Multiple Sclerosis Study Group and University of British Columbia MS/MRI Analysis Group. Interferon beta-1b in the treatment of multiple sclerosis: final outcome of the randomized controlled trial. Neurology 1995;45:1277

Johnson KP. A review of the clinical efficacy profile of copolymer 1: new U.S. phase III trial data [review]. J Neurol 1996;243(4 suppl 1):S3

Kraft GH. Improving health care delivery for persons with multiple sclerosis [review]. Phys Med Rehabil Clin N Am 1998;9:703

Holland N. Primary care management of multiple sclerosis [review]. Adv Nurse Pract 1999;7:26

Comi G. Why treat early multiple sclerosis patients? [review]. Curr Opin Neurol 2000;13:235

Jacobs L et al. Intramuscular interferon beta-1a therapy initiated during a first demyelinating event in multiple sclerosis. CHAMPS Study Group. N Engl J Med 2000;343:898