Virginia lawmaker with Parkinson's helps lead the charge in creating panel to fight the illness
WASHINGTON — In a nod to a colleague who struggled with an aggressive form of Parkinson's disease, members of the House of Representatives, likely on the last vote of the year, saved a bill that they hope could one day help the debilitating disease exterminate.
The bill is named after Democratic Virginia Rep. Jennifer Wexton, who has the disease, and the brother of Republican Florida Rep. Gus Bilirakis, who died in May after a long battle with it.
The legislation establishes an advisory board of public health experts and others from the private sector who will issue an annual report evaluating efforts to prevent, treat and cure Parkinson's. Bilirakis and Rep. Paul Tonko, DY, are the lead sponsors of the legislation.
Thursday's vote was hardly controversial, with a vote of 407 to 9, but it was emotional.
Wexton, now serving her third term representing a district in Northern Virginia, has deteriorated so rapidly this year that colleague Jennifer McClellan, D-Va., read Wexton's speech for her the day before the vote. It was a terrifying self-portrait of what she endured.
She recently noted that last year she got up every morning to go to the gym. And just this year, she was able to walk through the House chamber with confidence. She started using canes over the summer and now relies heavily on a walker.
“My husband and I were getting into the good part and were looking forward to enjoying our empty nest while our youngest son headed off to college to join his brother,” Wexton said in her statement. “Instead, he will be a caregiver. .”
“Instead of diving together in the morning and playing Scrabble under a palm tree in the afternoon, we won't be enjoying a relaxing retirement in ten years,” she added.
Nearly 1 million people in the US live with Parkinson's disease. Wexton said she knows her family is not alone and called the legislation a historic step toward a world where “no family has to put up with what ours has.”
“If there is one thing we can all agree on, it is that we can and must do better to combat these terrible diseases,” she said.
Wexton, 55, has announced that she will not seek re-election next year. She said she had to come to terms with giving up what she loves most, but would continue the fight on behalf of the wider Parkinson's community for as long as she is able.
McClellan said she served with Wexton in the Virginia General Assembly before being elected to the House. She told colleagues how she saw Wexton turn others' pain into progress.
“And now I feel honored to serve with her as she does so with her own pain – turning it into progress, to fight for those who cannot fight for themselves,” McClellan said.
Several lawmakers who spoke on behalf of the bill spoke in emotional terms about how family members battled the neurological disease. Rep. Russ Fulcher, R-Idaho, said his father, grandfather and brother fell prey to the disease. He addressed Wexton personally.
“This bill would not be possible without Representative Wexton, so I close by saying to you, my friend and colleague: There is hope,” Fulcher said. “This disease can affect you physically, but never your soul. ”