Woman seeks support for Huntington's bill

ALBUQUERQUE (KRQE) - A woman in Albuquerque is in the fight of her life.

A brain-eating disease runs in her family. She says the first few years after being diagnosed are crucial in slowing the effects of the disease down. But during that time many are in limbo waiting for Medicare to give the go ahead to get treated.

She's asking congress to change that

Angela Mabry knows a deadly disease runs in her family and that means she has a 50-50 chance of surviving.

“It can go either way,” Mabry said. “They can tell me that I have it and I have to live with those results, and they say that you can't take them back.”

Huntington's disease has killed her grandfather now her father and brother have it.

She's been apprehensive to get herself tested because the disease is a death sentence.

Her dad is a Navy veteran diagnosed at 35, he's now in his forties and lives in a nursing home.

A video she made shows how hard the disease can affect victims but more importantly how fast it progresses.

For those suffering from Huntington’s disease applying and getting approved for help from the government can drag on for years..

Medicare takes two years, social security benefits can take just as long.

Mabry says that is time they don't have that could be used for treating the disease. Some local lawmakers agree.

“If you have to wait two years for example to get the kind of treatment you need, it can make a huge difference in whether or not you're able to manage those symptoms, especially in the early years,” Martin Heinrich said.

Heinrich is part of the more than 100 congressmen co-sponsoring the Huntington’s Disease Parity Act of 2011.

The bill would require Medicare to waive the two-year waiting period and allow victims of Huntington’s disease to receive thorough tests beyond just blatant body movements.

“It became very clear to us that the social security folks were looking at Huntington’s disease with a very old medical model,” Heinrich said.

There's no cure, but plenty of medications available to slow the degenerative process.

Mabry says she's done waiting for the inevitable, also.

She wants to get tested in the New Year to find out if she has Huntington’s.

“We feel like we have a black cloud hanging over. If we twitch our foot, it's the disease, if we move your fingers funny, it's the disease. If we drop a pen it's the disease,” Mabry said.

But if the results do come back positive, she hopes there will be enough time and one day treatment that she won't succumb to the same fate.

The bill is gaining more support as congressman Ben Ray Lujan decided to co-sponsor the bill as well.