Barriers Prevent MS People From Fully Committing To Treatment Regimen

Armen Hareyan's picture

Nearly all people (97 percent) with multiple sclerosis (MS) who have started treatment say their commitment to managing their disease in every way possible is their prime motivation for staying on therapy, according to a new North American survey of people with MS, results of which were released today at the Consortium of Multiple Sclerosis Centers annual meeting in Denver. However, the survey also found that people with the disease can face significant barriers that make it difficult for them to start or stay fully committed to an effective treatment regimen.

The survey, which interviewed 220 people in the United States and Canada who have been diagnosed with MS in the past five years, uncovered a number of barriers patients face to starting and staying on medication, including the affordability of prescription medicine, injection-related issues and side effects, and the difficulty of maintaining a medication schedule.

"Studies have shown that starting effective therapy soon after a diagnosis of MS and continuing that therapy on a consistent basis may significantly slow the progression of the disease. This survey underscores the fact that despite their best intentions, many people with MS need help overcoming challenges that keep them from fully committing to treatment," said Amy Perrin Ross, APRN, MSN, CNRN, MSCN, president of the International Organization of MS Nurses. "The good news is there are several things that can be done to help give patients the best chance of starting and staying on therapy, including exploring financial assistance programs, forming lasting partnerships with an MS nurse and other supporters and choosing an effective MS medication that addresses a patient's personal hurdles. This can mean looking at attributes of a medication such as proven efficacy and safety, storage requirements, and the availability of support programs and financial assistance."


According to Ross, newly diagnosed patients first must accept the fact that they have a chronic illness that requires life-long care. For many, anxieties about treatment can be overcome by the desire to limit the impact of their condition, and by understanding that early, effective and consistent treatment may positively affect the course of their disease. In fact, more than two-thirds of respondents in the survey agreed, "I would have started treatment earlier (after my first attack, even before official diagnosis) if I had known that it would better decrease the risk of disability.(1) But, Ross added, many patients require ongoing support in order to maintain that commitment.

In the recent survey, patients cited various injection-related issues as being significant barriers to their committing to therapy. Four in 10 patients (41 percent) named at least one injection side effect as an extremely or very strong barrier keeping them from staying on medication, such as skin reactions (14 percent) and lumps in the skin (10 percent). When Genelle, age 29, was diagnosed with MS, she experienced skin-related side effects with her first medication. "I was really unhappy with the painful and embarrassing side effects that I was experiencing," she said. "Once I switched to another medication called Betaseron*, the side effects improved."

Like the 21 percent of study respondents who reported not wanting to inject themselves as a barrier to taking an MS medication, Genelle also had some misgivings about the required self-injections. "With Betaseron, I not only had to give myself far fewer injections, the BETA nurse assigned to me helped me overcome my anxiety about injecting myself. I can call her any time I need her, which has really given me the support I need to stay on therapy," she said.

For Jillian, age 19, the issue of staying on treatment had to do with affording her medicine, a barrier also noted by 27 percent of people surveyed. "The day I learned I had MS, I vowed to do everything I could to fight the disease. So when my doctor recommended treatment, I followed his advice," Jillian said. "But my commitment was challenged when I recently lost my insurance. With only three doses of my medication left and no possible way to pay for another prescription, I was going to lose the one thing that was going well for me. My doctor told me that I could continue receiving my medicine through a company-sponsored patient assistance program. It's one of the benefits of the BETAPLUS(b) program that patients on Betaseron can sign up for. It was a great relief and allowed me to continue my fight against the disease."

Participants in the survey noted that worries about how to store medicine while traveling or away from home (9 percent) also diminish their commitment to treatment. Factors cited by survey participants that make it easier to stay on medication include family support (84 percent), drug company-sponsored support such as materials or Web sites (60 percent) and a nurse provided by a drug company (43 percent).