By Emily White, Idaho Press Reporter
Boise resident Jennifer Clawson, a 39-year-old stay-at-home mom with three kids, has spent the last five years looking for a new neurologist after her previous one retired. She is still searching for a family doctor.
Clawson faces unique challenges in finding medical care because she has Huntington’s disease, a degenerative brain condition that can impair mobility and cognitive functioning.
Idaho ranks 49th out of 50 states in neurologists per capita and the entire state has a total of three movement disorder neurologists, said St. Luke’s neurologist Ryan Smith.
“There’s just a dearth of neurologists in our state,” Smith said. “With the population growing significantly there’s a challenge in taking care of all the patients moving in.”
According to Smith, general neurologists do not take care of people with Huntington’s — subspecialists called movement disorder neurologists do. St. Luke’s just hired a fourth movement disorder neurologist in hopes of helping more people get care, Smith said.
The lack of care for the disease in Idaho is a big problem to people and their families, said social worker Brianne Heimbuch. Heimbuch works with families and individuals in Idaho to help get them care — anything from getting a new neurologist to finding an inpatient or nursing home to stay at. Heimbuch said the lack of care for Huntington’s in Idaho stems from three things: misinformation about the disease, discrimination against people with it and the cost of care.
Individuals with Huntington’s can have symptoms that include major behavioral, anger and mood management struggles, hallucinations and chorea, Heimbuch said. Placement for these patients, in particular, is very difficult, she said.
”I have individuals I work with that are in their 30s and 40s and are on disability because they’re no longer physically able to work because of the movements,” Heimbuch said.
Losing the ability to work in the prime of their lives combined with the lack of care facilities that treat people with the disease creates a big problem.
”Psychiatric facilities say Huntington’s disease is a movement disorder, a medical condition, so we don’t take that,” she said. “On the flip side, I hear from assisted living and things that Huntington’s is a psychiatric disorder, so we don’t take that.”
The problem is, Huntington’s is both. According to licensed genetic counselor Anne Spencer, Huntington’s is characterized by nerve cells breaking down in the brain. It develops gradually and symptoms vary from person to person.
”Early on, symptoms are really mild and overlap with things that people normally do, like forget things or have anger outbursts, or have trouble making decisions or are impulsive,” Spencer said. “Later on, you’ll start to see more of the physical movement.”
Those physical movements can trigger more physical symptoms: difficulty walking, talking, weight loss, and the gradual loss of the ability to move in an intentional way.
Clawson started noticing symptoms of the disease nearly eight years ago, starting with chorea and problems balancing.
She sought care in Boise and Salt Lake City while her symptoms continued to escalate.
She participated in a clinical trial at the HDSA Center of Excellence at the University of Utah in Salt Lake
a few years ago, driving down every other month for two years to get blood work, a spinal tap, injections, and more.
”I feel like I got worse,” Clawson said. “I always thought I was on the placebo, so did the doctors, but I was actually on the drug. ... It didn’t turn out the way we all hoped.”
Because Huntington’s has no cure, she has continued to participate in various clinical trials.
Gerald Fangsrud is 67 and has lived in The Gables Assisted Living in Blackfoot for nearly two years. After running out of money, he said, he is looking for a new place to live that will take Medicaid.
The assisted living near him, The Willows, won’t take him because he has Huntington’s.
The Willows previously took care of his father, who also had Huntington’s, before he went to a nursing home.
Fangsrud sees a neurologist in Salt Lake, carpooling with his sister-in-law and his brother, who also has Huntington’s. He has not received care for the disease in Idaho, even though he lives here.
His savings took a hit when he received Social Security disability at 55, but had to wait two years for health care benefits kicked in.
”I got food stamps, that’s how I was able to eat,” Fangsrud said. “Then I just had some savings so I had to use that up.”
It is possible, Heimbuch said, for individuals with Huntington’s to get exempt from that two-year wait period. There are other diseases that are exempt from it because of their progressive nature, but Huntington’s has yet to secure that exemption, Heimbuch said.
”With the disease being a progressive in nature, there’s a lot of medical needs during that time when they don’t have coverage,” Heimbuch said. “That’s what is frustrating about the denial to care for him — it’s really just on the basis of his disease.”
Fangsrud, Heimbuch said, did everything he needed to in order to take care of himself financially. He applied for the right things, he followed all the directions, he had plenty of savings. And yet, he is struggling to find a place to live.
Finding care for her clients is so hard that sometimes, Heimbuch refers people to a hospital, because they won’t keep someone there longer than necessary and will find care for the patient.
“It’s a sad reality that people have to be hospitalized in order to find adequate placement,” she said.
Some facilities, Heimbuch said, have had a bad experience with people with Huntington’s from five to 10 years ago.
“I am told most often by facilities, that we don’t take Huntington’s disease, just as a blanket statement,” she said. “They just close the door for all Huntington’s disease patients. ... It’s basically discrimination due to a disease that is out of somebody’s control.”
Heimbuch is calling for people to assess the individual, rather than discriminating against those with the disease.
“Intermountain, Saint Al’s inpatient mental health, Canyon View, Cottonwood, West Valley, and State Hospital have all denied based on an individual’s diagnosis of Huntington’s Disease,” Heimbuch wrote in an email.
One in 10,000 people have Huntington’s, Spencer said, but there’s just not enough awareness for them.
“We need community and we need people who can understand what we’re going through,” Spencer said. “It’s very scary if we’re alone.”
Spencer said one of the difficult parts about her position is that there is so much unknown about the disease.
”Hopefully with everyone raising money for the (Huntington’s Hope) walk and other things, we will eventually be able to say, ‘Yes, if you find out you have it, then we can do things to cure it or slow the progression now.’ When that happens, then I would recommend testing for people,” she said.
But the way things are now, Spencer said the only reason to get tested is so people can make personal decisions in their own relationships and for their own life planning.
After working with so many families and individuals, Spencer found that a Huntington’s diagnosis often left people and their families feeling isolated and lonely. To combat this, she started a support group that has continued for 20 years.
“We found as we gathered and talked about things in the support group that we really needed somebody to advocate for our patients,” Spencer said. “That’s when we started having the walks actually and started doing fundraising was with the goal of getting a social worker.”
Eventually, they found Heimbuch.
Fangsrud and Clawson have continued to move forward, despite the lack of care available to them. Fangsrud calls his brother, who has a hard time speaking because of the disease, almost every day. It encourages him and his brother, he said.
Clawson works out and tries to read a little bit every day. All the while, she is watching her mother go through the progression of the disease.
“It’s been sad,” she said through tears. “It’s hard to watch and know exactly what’s happening. I know exactly what’s going to happen.”