MS drug has the potential to change lives (12/15/14)
FORT WORTH — Sundie Ellis, 40, is busy again, working full time for the first time in years.
"Before Lemtrada, I worked about three or four hours a day," she said. "Now I work a full day — plus I help out around the house, which is not something I could do."
Multiple sclerosis triggered serious nerve pain, exhausting fatigue, and mental confusion in Ellis for 11 years. She took 15 medications daily just to function.
In desperation, she traveled to Germany in April to receive infusions of a drug called Lemtrada for five consecutive days. The once-a-year therapy has the potential to help alleviate MS symptoms.
In some cases, lost function has been restored.
Lemtrada was not approved by the Food and Drug Administration for use in the United States when Ellis made her transatlantic journey.
It wasn't the potential for serious side effects — including kidney failure and thyroid cancer — that led to the FDA decision. Rather, Lemtrada had not been tested in double-blind, placebo-controlled studies, like most other drugs.
Lemtrada did have years of testing, however, and had been approved for use in 40 other countries. Many MS patients were willing to travel overseas and pay for the drug out of pocket, at a cost of more than $100,000.
Ellis said not long after the therapy, she stopped needing most of the medications she had been taking.
"And any time you get rid of one medicine, you get rid of the side effects that come with it," she said. "So it was kind of lifting of symptoms, and the day was better."
In November, the FDA approved Lemtrada for use in the U.S.
"Its biggest effect is to give people hope," Ellis said.
Now, she says she has hope and energy to live life again. When she needs another infusion next year, she'll only have to travel down the street — not to Germany — to get it.
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