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For multiple sclerosis sufferers, an anxious hope

A working crew of six people with MS sailed the Oceans of Hope yacht into Rowes Wharf.David L. Ryan/Globe Staff/Globe Staff

Jill Lagace, a Taunton estate attorney, was diagnosed with a relapsing form of multiple sclerosis in 1998 and started taking injectable drugs to control the symptoms. But Lagace eventually developed what she calls “needle fatigue” and switched to an oral MS therapy last year.

“I was at a place where I just couldn’t take another needle,” she said.

While she has been satisfied with the pills, Lagace would like drugs that not only treat but reverse — and ultimately eradicate — the neurodegenerative disease.

That hope forms the backdrop in Boston this week for a global conference of scientists, doctors, and patient advocates that should offer a look at the progress being made in improving the lives of least 400,000 Americans and more than 2.3 million people worldwide with MS. The disease can cause fatigue, loss of vision, altered sensation, and impaired mobility.


Among the efforts that will be discussed are long-term research focusing on neuroprotection — protecting the fatty substance known as myelin that surrounds and insulates nerve fibers — and remyelination — a way to repair nerve damage in MS patients.

“Remyelination is the real Holy Grail,” said William Sibold, senior vice president and head of the MS franchise at Genzyme, a division of French drug maker Sanofi SA. “If we can find products that stop the damage and fix the damage to the myelin, that’s the next step.”

More than 8,000 people are expected to attend MSBoston2014, opening Wednesday at the John Hynes Convention Center. The event, considered the premier international MS gathering this year, is hosted jointly by the American and European Committees for Treatment and Research in Multiple Sclerosis, which alternate meetings between Europe and North America.

This will be the groups’ first joint meeting in Massachusetts, a hotbed of research and home to several leading MS drug companies that will make dozens of scientific presentations.


“There’s a lot of our science being showcased at this meeting,” said Douglas Williams, executive vice president of Cambridge-based Biogen Idec Inc., the world’s leading seller of MS medications. The company has multiple drugs on the market and more in its labs.

Genzyme and Novartis AG, two companies with big operations only blocks from Biogen Idec’s in Kendall Square in Cambridge, also compete aggressively in the MS market and are seeking to raise their profiles. So are EMD Serono of Rockland and a pair of overseas players, Bayer AG of Germany and Israel’s Teva Pharmaceutical Industries Ltd.

“Our strategy is to find the right MS treatment for the right patient at the right time,” said Danny Bar Zohar, the Swiss-based program head for multiple sclerosis at Novartis, which marketed the first MS pill, Gilenya, along with the injectable Extavia and is now exploring personalized MS medicines.

The excitement surrounding MSBoston 2014 began building Monday when the Oceans of Hope yacht, with a working crew of six people living with MS, completed a trans-Atlantic crossing by sailing into Rowes Wharf in Boston. “I can tell you that we have a very strong boat and a very strong crew,” said the captain, Mikkel Anthonisen, a medical doctor who practices at the Danish Multiple Sclerosis Center at the University Hospital of Copenhagen.

At the conference, the International Progressive MS Alliance is also expected to award about $30 million in grants to researchers working on treatments for progressive MS, a form of the disease for which there are no approved drugs.


Until 1993, when Bayer won regulatory approval to sell Betaseron, there were no treatments for relapsing remitting MS, the form of the disease that affects most patients. Since then, several other injectables and, more recently, oral therapies have entered the market.

“Things have gotten dramatically better,” said Lori Espino, president of the Greater New England Chapter of the National Multiple Sclerosis Society. “There are so many options out there for patients, and they slow the progression of the disease. It’s all about creating hope for people.”

Worldwide sales of MS drugs totaled more than $16 billion last year and are projected to top $20 billion within the next two to three years, with MS pills accounting for about half of the sales, said Eric Schmidt, biotech analyst at investment bank Cowen & Co. in New York.

Because there are various forms of the disease, which affects different patients in different ways, “the MS market is in need of a variety of therapeutic approaches,” Schmidt said. While most of the MS drug companies are conducting research into treating primary and secondary progressive MS, he cautioned that much of this research remains in the early phases. Market leader Biogen Idec markets three “blockbuster” MS drugs, treatments generating more than $1 billion in revenue annually: injectables Avonex and Tysabri and the top-selling pill, Tecfidera. Last month, Biogen Idec won Food and Drug Administration approval to sell a longer-lasting injectable called Plegridy. But its most pressing focus is an experimental drug known as anti-Lingo, which would strengthen the ability of cells to repair nerve damage.


“It’s obviously a high-risk area,” Williams said. “It’s never been done before. But we’re in this game for the long term, and we want to get to the best possible outcome for patients.”

Genzyme, meanwhile, is marketing an oral MS drug called Aubagio in the United States and awaiting an FDA decision on its injectable drug candidate, Lemtrada, which was initially rejected by the FDA but is already on the market in more than a dozen countries. “This is a potentially transformational therapy and we’re spending a lot of time educating specialists,” Sibold said.

Recovering from its own MS setback, when the FDA rejected its experimental oral drug in 2011, EMD Serono, the North American arm of Germany’s Merck KGaA, continues to market its injectable Rebif while working on a number of MS therapies. Last year, it licensed a T-cell compound from Woodlands, Tex., biotech Opexa Therapeutics Inc. and launched an autoinjector called Rebif Rebidose to make it easier for patients to inject themselves.

“MS is one of our core areas,” said EMD Serono’s chief medical officer Thorsten Eickenhorst. “We have research activities ongoing and products in our clinical pipeline.”

Bayer, working to enhance Betaseron, one of the drug giant’s top-selling products, has been working with researchers at the Harvard School of Public Health to study the impact of Vitamin D on MS patients who take Betaseron. “We are highly committed to MS,” said Klaus Marten, vice president and general manager of the company’s MS business in Whippany, N.J.


Robert Weisman can be reached at robert.weisman@globe.com. Follow him on Twitter @GlobeRobW.