Bipartisan legislation would help provide Medicare for Huntington's disease
COLUMBIA - The Huntington's Disease Society of America hosted Columbia's Team Hope walk and run on Saturday. The walk is the HDSA's signature "fundraising campaign to support HDSA's mission to improve the lives of everyone affected by Huntington's Disease," a press release said.
Huntington's disease is a fatal genetic disorder.
"No one survives it," Team Hope organizer Candace Rodman said. "It hits fast and hard. It's neurological, so it affects your motor functions, cognitive functions, and psychological functions."
Rodman said it's described a having Parkinson's, ALS, and Alzheimer's all at once. She said her father died from Huntington's disease, as well as several of her father's nine siblings.
"I've seen what it does to people, I've seen what it does to families that are involved and it's terrible. It's hard to watch," Rodman said. "You hate it for them and you want to take it away and put it on yourself."
On May 15, members of congress re-introduced the Huntington's Disease Parity Act, which would ensure Medicare coverage is available to people with Huntington's Disease immediately after they qualify for Social Security Disability Insurance. As of now, there is a two year waiting period before they're eligible for Medicare benefits.
"Two years is far too long for someone with Huntington's. In two years you could either be far too symptomatic to take care of yourself, you could be bankrupt from the medical care debt that you've incurred, or you could be dead by then," Rodman said.
There have been no official statements of opposition to the act.
Rodman said one of the biggest expenses for families dealing with Huntington's Disease are medical aids.
"You're going to need help. And unless you are independently wealthy, or have a spouse that can quit their job, you're going to have to hire someone, some kind of medical aid to come and help you on a daily basis. And people go bankrupt from it because they have no option," Rodman said.
Proceeds from the Team Hope walk and run will go to both research and assistance for Huntingson's families.
"We understand that there's people waiting on that cure, so we need to work on that on one section, but there are people living it right now, and they need just as much help as anybody else. And it's hard and it's heartbreaking to just let those families just sit and wait," Rodman said.
Rodman said she hopes the Team Hope walk and run will help make a difference in the lives of people with Huntington's disease in Mid-Missouri.