Ann Romney spearheads a sweeping MS study
For three years after she was diagnosed with multiple sclerosis in 1998, Ann Romney was miserable. An active mother of five, the disease so exhausted her, she could barely get out of bed.
But after that horrible time, Romney, wife of former presidential candidate Mitt Romney, began to bounce back. She has fared well since, supporting her husband on the campaign trail, doing charitable work and playing with her grandchildren.
Despite tremendous advances in medication, doctors still don’t know why the early stage of MS can wax and wane so much, and why some people with MS end up debilitated within a few years and others can continue to thrive for decades.
Romney has volunteered to be one of the first of 2,000 participants in a new study aimed at unraveling that mystery.
“We’re hoping this will serve as a foundation for understanding MS in the modern era in a way that has not been understood,” says Howard Weiner, director of the MS center at the Brigham and Women’s Hospital in Boston and co-principal investigator of the new SysteMS study.
The research is a collaborative effort from the Ann Romney Center for Neurologic Diseases at Brigham and Women's Hospital in Boston; the drug company Biogen, which makes several MS medications; and Google, which will handle the sensor tracking and data analysis. Biogen and Google will cover the undisclosed cost of the multi-year SysteMS study.
Volunteers will wear activity sensors, answer frequent questionnaires and allow deep biologic profiling of their genes, immune activity, blood, urine, saliva and stool.
“Maybe there’s something in the environment that we’ve missed, or some behaviors that have a big impact and we just don’t understand them,” says Rick Rudick, vice president of Development Sciences at Biogen.
Until about 20 years ago, there were no treatments that altered the course of MS deterioration, a disease in which the immune system attacks the insulation on nerve cells, disrupting electrical signals. But today, the 400,000 MS patients in the USA can choose among 14 drugs and doses that can extend the milder, early stage of the disease, sometimes indefinitely.
The expansion in treatment has been fantastic for patients, but also added a layer of complexity, because not every drug will work for everyone, says Tanuja Chitnis, a Brigham neurologist who co-leads SysteMS and has directed an ongoing, 15-year study of Brigham MS patients.
Romney, who described her MS journey in a new book, In this Together: My Story, says she knows many MS patients who gave up on medication when the first one they tried wasn’t helpful. She hopes the SysteMS study will eventually allow patients to be directed to medications that are a good personal fit – so they won’t miss out on the drugs’ benefits. “It’s really a bad idea not to be on treatment,” she says.
Better understanding the course of the disease — and who is more likely to fare poorly — will also help determine therapy, Chitnis says. “It will be easier to recommend a more powerful treatment if you know this patient has a higher chance of having a more aggressive disease.”
Sensor technology and big-data analysis has reached the point where it can be extremely useful in combination with other biological measures, says Jessica Mega, chief medical officer of the life sciences team at Google.
Right now, doctors have little information about their patients except during exams, which may happen only twice a year. Sensors will offer interim data, giving a much deeper sense of the course of the disease and what factors might trigger up vs. down days.
This will the second disease area Google has investigated, after diabetes, Mega says, adding that the company probably will look at other conditions in the future, combining sensors with physiological data. “That’s a model one could imagine could be scalable,” she says.
Romney says she agreed to participate largely out of curiosity about the disease that has been a part of her life for so long
For her, MS started with a numb feeling on the inside of her right leg. Within two months, that numbness had spread all the way down to her foot and up to her chest.
“It was terrifying. I didn’t know when it was going to stop,” she says. “I felt like there was a little Pac-Man eating me away.”
Medication quickly restored her feeling, but she remained so exhausted that some days she lacked the strength to speak. The thought of exerting the energy to open the family’s mail would bring her to tears, she says. Her brain was in a fog.
She spent the next three years receiving conventional therapies and experimenting with complementary ones. She learned how to live with her changed body and to revise her role as family caregiver, she writes in her new book.
Since then, she has been able to live a more normal life.
“I certainty wish that we could understand why I responded so well to treatment,” says Romney, explaining why she volunteered for SysteMS. “There’s no question that this is very, very important.”