Understanding how people living with multiple sclerosis grapple with symptoms and respond to medication is becoming a top priority for neurologists and drug companies, said health professionals in town for the MSBoston2014 convention, which opened Wednesday.
“We’ve focused a lot on the neurologists’ impressions of how people are doing,” Dr. Jeffrey A. Cohen, director of the Mellen Center for Multiple Sclerosis Treatment and Research at the Cleveland Clinic, said during a press briefing. “Now we realize it’s important to get the patients’ input.”
MS patients and advocates are a major presence at MSBoston2014 — the largest MS scientific meeting ever, with more than 8,500 people registered — and at various events surrounding the convention. MSBoston2014, which runs through Saturday at the Hynes Convention Center, is sponsored jointly by the Americas and European Committees for Treatment and Research in Multiple Sclerosis.
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On day one of the event, Cambridge biotechnology company Biogen Idec Inc. released the results of a five-nation survey it commissioned in partnership with a neurologists’ group, the State of MS Consortium, showing differences in the perceptions of MS patients and neurologists when discussing symptoms.
The survey found many patients seek more information online or through social media, while neurologists tend to underestimate their patients’ discomfort talking about symptoms of the neurodegenerative disease, which range from muscle spasms to bladder or bowel problems to difficulty walking. At least 400,000 people in the United States and more than 2.3 million worldwide have been diagnosed with MS.
Kristen Adams, a former “Good Morning America” producer who was diagnosed with the disease in 2008, told a Tuesday night pre-conference briefing hosted by Cambridge biotech Genzyme that the majority of MS patients have symptoms that are invisible to others.
“You can’t see the fatigue, the dizziness, the numbness, the depression,” Adams said. “There are a whole lot of people like me walking around.” She said MS medicines on the market help to prevent relapses but don’t address such symptoms as fatigue.
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Eleven drugs have been approved by regulators to treat relapsing, remitting MS — the most common form — but none yet have been approved to treat primary or secondary progressive MS. Finding treatments for that form of the condition has become a priority for researchers, said Dr. Suhayl S. Dhib-Jalbut, president of the Americas Committee for Treatment and Research in Multiple Sclerosis and director of the Robert Wood Johnson Center for Multiple Sclerosis at Rutgers University.
“We’re seeing significant advances in MS research, and there are more and more therapies hitting the market,” including five or six new drugs in recent years, Dhib-Jalbut told reporters at MSBoston2014. But, he added, “we still don’t know what causes the disease.”
Drugmakers at the convention are presenting fresh clinical data on approved treatments, drugs nearing approval, and experimental compounds in the early stages of testing. Other sessions will focus on new imaging technology for monitoring MS, the potential of stem cell therapies for treating patients, and searches for biomarkers that can predict the course of the disease and for which drugs might work best for particular sets of patients.
Several companies are also working on ways to protect nerve cells, called neuroprotection, and to repair cell damage, a process known as remyelination.
“It’s going to take us three and a half days to address the state of the disease,” Cohen of the Cleveland Clinic said. “There’s 11 medications to treat the disease, and even more around the corner.”
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Biogen Idec’s study, conducted by Harris Poll, surveyed nearly 1,000 patients and 900 neurologists in the United States, the United Kingdom, Germany, Italy, and Spain. While patients overall reported a positive outlook about their future and their relationship with their doctors, one in five said they were uncomfortable talking about their symptoms.
“People have fears in talking about a change in mobility,” said Nancy Law, executive vice president for programs and services at the National Multiple Sclerosis Society.
The survey also found that, while most neurologists preferred to give patients written information at the office or refer them to disease organizations, the patients — especially younger ones — wanted to get information online.
“They go on Facebook, they go on Twitter, they go into chat rooms,” said Dr. Sibyl Wray, director of Hope Neurology Multiple Sclerosis Center in Knoxville, Tenn., who said neurologists must present scientifically valid information about MS through online channels.
“Right now, they are not getting the kind of information we as [health care] providers would like them to get,” Wray said.
Robert Weisman can be reached at robert.weisman@globe.com. Follow him on Twitter @GlobeRobW.
Correction: An earlier version of thsi story has the incorrect number of nations that were part of the Biogen Idec study. It was a five-nation study involving the United States, the United Kingdom, Germany, Italy, and Spain.