For this Activist, MS Is Like Politics:
Learn, Stay Focused and Move Forward
A political career was good preparation for Rob Engel’s life with MS.
“In campaign politics, you learn to stay focused and keep moving,” said the former executive director of the Democratic National Committee and adviser to multiple congressional and presidential campaigns.
“No matter what a poll says, no matter where the campaign is at any point in time, you stay focused on your goals and keep moving to meet them. In dealing with MS, I did the same thing: I understood what the situation was and I stayed focused on the goals that will help me stay well over the long term.”
Engel was diagnosed in 2002 and immediately began volunteering for the Society’s National Capital Chapter, and then the Federal Activism Council. But he was a health care activist long before that. Despite its platform of health care reform, the Democratic Party had the same challenges as any other employer in covering people. Engel made it his personal mission to prove that a large, nationwide employer could cover everyone.
"If I’m the campaign manager and I wanted to hire you to be part of the campaign, I would have a hard time getting you covered. I would say, ‘You leave your job, come work for me,’ but I couldn’t offer health benefits," he said.
It took eight and a half years to work out a plan that covers all Party workers nationwide. “That’s the most important thing I’ve ever done,” said Engel, who now works for a Party affiliate called the Foundation for the Future. “My argument throughout the whole 90’s was you can’t be the party that believes in health care for all if we don’t have health care for all those who work in the Party.”
As a member of the Society’s Federal Activism Council, Engel’s big issue is physical therapy. Insurers demand measurable improvements. But in MS, maintaining the patient's current level of functioning is a more realistic goal.
“The hospital where I get physical therapy is saying, ‘Right now you’re in a situation where you’re at maintenance, and we cannot do maintenance for anyone,’” Engel said.
Contacting legislators and the White House isn’t the only way Engel helps the MS movement: he also loves people-to-people contacts like handing out t-shirts at Walk MS events.
“When I work in politics, I like to take leaflets and put them under windshield wipers at county fairs, because that’s how I started,” he said. “I happen to like to give out shirts at events, because that’s another way I can be helpful.”
Learn more about MS advocacy and activism.