NEW PRIMARY PROGRESSIVE MULTIPLE SCLEROSIS MEDICATION – OCRELIZUMAB

“This is a big deal for people with MS.”



 

On Tuesday night — after decades of false starts, struggles to persuade disbelieving colleagues, and a tortuous path through the maze of drug discovery — Swiss drugmaker Roche Holding AG announced that the Food and Drug Administration had approved its new drug for MS based on Hauser’s research. Researchers say the medication is a significant improvement over other treatments for the debilitating disease, which afflicts more than 400,000 Americans and by some estimates more than 2 million more patients worldwide. 

The decision was based largely on results of a 732-patient, Roche-sponsored clinical trial that showed primary-progressive patients on the drug were about 25 percent less likely to have their disability worsen.

While the clinical benefit was “modest,” said Bruce Bebo, executive vice president of research at the National Multiple Sclerosis Society, having a treatment reach the market “is huge. “We have nothing to offer people with primary-progressive MS.”

The FDA also cleared the drug for the more common relapse-remitting form of the disease, which is characterized by inflammatory attacks that trigger such early symptoms as vision problems, tingling in the feet, weakness, and muddled thinking.

In a market already bulging with expensive drugs for that form of MS, Roche set an annual price of $65,000 for the twice-a-year infusions.

READ MORE:   After 40-year odyssey, first drug for aggressive MS wins FDA approval

 



“WHEN I WALK”

Jason DaSilva – Living with Primary Progressive Multiple Sclerosis

In 2006, 25-year-old Jason DaSilva was on vacation at the beach with family when, suddenly, he fell down. He couldn’t get back up. His legs had stopped working; his disease could no longer be ignored. Just a few months earlier doctors had told him that he had multiple sclerosis, which could lead to loss of vision and muscle control, as well as a myriad of other complications. Jason tried exercise to help cope, but the problem only worsened. After his dispiriting fall on the beach, he turned to his Mom, who reminded him that, despite his disease, he was still a fortunate kid who had the opportunity to pursue the things he loved most: art and filmmaking. Jason picked up the camera, turned it on his declining body, and set out on a worldwide journey in search of healing, self-discovery, and love. An emotional documentary filled with unexpected moments of humor and joy, WHEN I WALK is a life-affirming film driven by a young man’s determination to survive—and to make sense of a devastating disease through the art of cinema. Find a screening near you and learn more at www.wheniwalk.com

 

Person of the Year: Jason DaSilva

JASON DASILVA

Jason DaSilva’s award-winning film, When I Walk, raised awareness of what it is like to live with primary progressive multiple sclerosis. Photo by Charlie Samuels.

 

Jason DaSilva is an artist. He will always be an artist, no matter how severe his disability becomes, because of how he thinks, feels, and views the world, and because of his passion and determination to communicate that viewpoint to people of all abilities and cultures. NEW MOBILITY is proud to name him our 2014 Person of the Year — for using his artistic talent and unique vision in a way that will benefit people with disabilities now, and for a long, long time to come.

Filmmaker Jason DaSilva, NEW MOBILITY’S 2014 Person of the Year, is at his desk working on a script with a volunteer assistant. A power wheelchair is nearby, but he’s sitting in an ordinary office chair. As I wonder how he can move about by himself, the assistant turns him around and pushes him gently toward me, ready to be interviewed.

All the clichés like the one about life giving you a lemon and you making lemonade fit DaSilva. Not only did doctors tell him that he had multiple sclerosis when he was just 25, but..  READ MORE NEW MOBILITY LIFE BEYOND WHEELS

 



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