Those with Huntington's disease gene push for Parity Act of 2009

From the Culpeper Star-Exponent in Virginia:

Patty Hillman (pictured), 47, prays to cope with the looming possibility of serious illness. But she’s also taking action.

The Jeffersonton resident has a 50 percent chance of inheriting Huntington’s Disease from her father, and her 23-year-old son faces the same bleak possibility.

“It is always in the back of your mind,” said Hillman, a systems engineer, noting that most at-risk people struggle with the threat of HD. “For me, prayer lightens the load and I feel like I can set HD aside for a little bit and move on to whatever is in store for the day.”

HD is a progressive, degenerative, neurological ailment that causes physical and mental deterioration over a decade or more. Symptoms include involuntary movement, dementia, obsessive-compulsive behavior, depression, mood swings, inability to concentrate and immobility. If a person carries the mutated HD gene, most people start to display symptoms between the ages of 30 to 50, Hillman said.

There is no treatment, no cure, and it is terminal.

Hillman’s father, who lives in Florida, was diagnosed with Huntington’s six years ago at age 68. He has since lost most of his mobility and has difficulty with speech: “He knows what he wants to say, but the process of getting his mouth to form words is difficult,” Hillman said, adding that most of his symptoms have been physical.

Not so with her grandfather.

Her dad’s dad died at age 68 in 1959 after living the last years of his live in a state mental institution. There was never any talk of him growing up, Hillman said, and she didn’t learn the truth that he was committed for unknown reasons until much later.

“We did not know that HD was in our family until my dad was diagnosed and the mystery surrounding my grandfather was immediately solved,” she said. “A lot of people with HD were institutionalized with a diagnosis made in my grandfather’s generation. People were also dismissed as alcoholics because of the shuffling gait and slurred speech.”

According to Joseph LaMountain, who represents the Huntington’s Disease Society of America in Washington, D.C., about 30,000 people nationwide suffer with HD while another 250,000 are at risk of inheriting it.

Though there is no cure, Hillman is doing what she can to make life easier for folks living with the illness. To that end, she recently visited with Republican Whip Eric Cantor, Culpeper’s congressman, on Capitol Hill to discuss House Resolution 678 — the Huntington’s Disease Parity Act of 2009.

Cantor is not a sponsor of the bill, but she and other HD advocates hope he can use his position to bring needed reform to Social Security regarding disability benefits.

HR 678, introduced this year by Calif. Reps. Bob Filner (D) and Brian Bilbray (R), would require the Social Security Administration to revise the medical criteria for evaluating disability in a person with HD.
That criteria is so outdated, Hillman said, that it even calls HD by the wrong name.

“People with HD are having to apply for disability over and over and even hire lawyers to get their disability approved, simply because the criteria has not been updated to reflect current medical standards,” she said.

HR 678 would also waive the two-year waiting period for Medicare eligibility for people disabled by HD.

Medication exists to treat certain symptoms of the disease, but because of all the red tape and outdated information, some sufferers are forced to get paper divorces just so they can qualify for Medicaid, Stillman said.

HD advocate Dr. Tim O’Neill, who went to Capitol Hill with Hillman and her husband, Bryan, has a brother-in-law who faced such obstacles receiving disability benefits.

“Greg is 39. He has been unemployable for six or seven years,” O’Neill wrote in an e-mail to Hillman. “He has significant chorea as well as cognitive and psychological issues.”

The first time Greg applied for disability, he was denied. He has since been approved for the Social Security benefits, but it took a while. Greg’s father died of HD at age 62, the same age as when his Medicaid benefits finally kicked in.

“I believe (Greg’s mother) has acquired significant debt including a second mortgage on her home,” said Dr. O’Neill, mentioning the “crippling financial burden of HD.”

Stillman is working on getting the law changed so as to ease some of that burden.

During her recent 20-minute meeting with GOP Whip Cantor, she presented him with a petition signed by 300 people in support of enacting the new legislation. The congressman was open to doing to what he could, Stillman said.

“He mentioned something akin to the fact that there was no excuse for this continuing.”

Cantor spokesman Brad Dayspring said the congressman was “extremely sympathetic” to Hillman’s situation.

“He agrees that the SSA should probably reevaluate possibly outdated criteria,” Dayspring said.

Stillman has high hopes that something concrete will come out of the meeting.

“While updating the Social Security regulations will not help alleviate HD, it will help alleviate the emotional worry and financial concerns of being denied disability time after time,” she said.

Changing priorities
LaMountain with the HDSA said it’s his job to make it a priority to enact the new legislation. Why the Social Security regulations have not been updated to reflect current medical knowledge on the disease is the $64,000 question, he said.

“Nobody disagrees that it needs to be changed, but it’s just not a high priority,” he said.

That’s where someone like Cantor, the No. 2 Republican in the U.S. House, can make a change, LaMountain explained, adding, “He is in a leadership position in Congress and he can do something about it.”

“The support he can give is behind the scenes,” LaMountain went on, saying Cantor could work to enact change to the Social Security regulations. “When a federal agency hears from someone in his position, they tend to pay attention.”

LaMountain, who suspects it will be a while before HR 678 is enacted, encouraged folks in Virginia’s Seventh District to contact Cantor’s office in support of bringing relief to HD patients.

In the meantime, Stillman will keep praying. She has strong family support and tries not to worry about the future.

“Bryan, my husband, has said that no matter what happens, he is not going anywhere,” Stillman said of her 26-year marriage. “But that is no guarantee. He told me one day, ‘It is what it is,’ and those five little words help me enormously.”