Twin Falls woman in Medicaid gap with Chiari malformation
Brittany Long had trouble swallowing when she woke up one day in July 2014. She had a headache — a sharp pain that turned into a throb from the base of her skull down her neck.
Thinking she was having an allergic reaction, Long took an antihistamine. Instead of relief, she just had more trouble swallowing. She rushed to the emergency room at St. Luke’s Magic Valley Medical Center in Twin Falls, fearful that her throat was closing. She was given more antihistamines.
“That was the first trip,” she said.
Since then, the 25-year-old Twin Falls woman has lost count of how many times she has gone to the emergency room. She went once or twice per week for about a year. Her mix of symptoms confounded doctors.
A recently divorced mother of three young children, Long is one of about 78,000 Idahoans in what is known as the Medicaid gap. She cannot afford health insurance but does not qualify for Medicaid.
The Medicaid gap has been in the headlines as people like Long shared personal stories in the past year. Dannielle Ryals, of Albion, has endometriosis and wants Medicaid expanded so she can see a doctor regularly. Jenny Steinke, a 36-year-old Idaho Falls woman, died in September 2015 from untreated asthma. Dr. Kenneth Krell, critical care director at Eastern Idaho Regional Medical Center in Idaho Falls, told Idaho senators in February that not passing a Medicaid expansion “has probably resulted in over 1,000 deaths in this state.”
Long wants lawmakers to expand the state’s Medicaid program to working-poor adults like her. She requested a meeting with one of her state legislators to talk about it.
‘A REALITY FOR ME’
Long had rapid heartbeats that anti-anxiety medication did not slow. She had fatigue, weakness, tremors in her hands and arms. She lost 60 pounds. She lost sensation in her limbs. She cannot hear well anymore.
Some doctors dismissed her condition as psychological, she said.
“I even felt crazy,” she said. “It seemed like, what in the world?”
After one of many MRIs, Long learned that she has a congenital condition called a Chiari malformation. The cerebellum at the base of her brain is pushing into her spinal canal. That cuts off the flow of spinal fluid and causes a range of problems.
Chiari malformation was once believed to be rare. With modern medical imaging, experts now think it affects more than 1 in 1,000 people. Some have no symptoms.
“If it goes untreated, then I will slowly become paralyzed, and from there I will end up on machines,” she said. “That is something that is a reality for me if I don’t get it taken care of.”
The condition can be treated with surgeries. One surgery removes part of the skull to make more room for the cerebellum.
She traveled to Phoenix last August to see a neurosurgeon at the Barrow Neurological Institute who specializes in her condition — a trip funded by family and friends, she said.
The neurosurgeon “said I’m definitely going to need surgery. ‘When’ is the question,” Long said. “It wasn’t necessarily emergent at the time, but we know it’s going to progress and get worse.”
Medicaid, the federal-state public health insurance program created mainly for low-income and disabled people, would cover surgery, assuming she had a doctor’s referral. It could cover travel expenses, too.
DEEP IN MEDICAL DEBT
Long has also lost track of how much money she owes doctors, hospitals and an ambulance company.
She said her medical debt surpasses $60,000, and she will eventually have to file for medical bankruptcy.
A collections agency recently won a court judgment against her for about $800, which she said is from medical bills. (It was not clear last week why Long owes money to the nonprofit St. Luke’s hospitals, which are supposed to offer charity care to low-income patients. Long says she filled out paperwork, through St. Luke’s, for bills to be covered by the county indigent medical fund but was not granted assistance.)
The debt started to pile up that day she woke up sick two years ago. By fall, she had missed two months of work.
She could not hold a 9-to-5 office or retail job, but she wanted to keep working, so she went into insurance. The irony is not lost on her.
As a self-employed insurance agent, she can work even when it is hard to get out of bed. If she is incapacitated for a week, her job will be there waiting the next Monday.
But it does not always pay well. Long made $9,287 last year — almost twice the income cutoff for single parents to receive Medicaid in Idaho. This year, she hopes to clear $20,000, which still leaves her in the Medicaid gap.
PATH TO NEUROSURGERY?
Absent a change in Idaho law, Long’s options for obtaining health insurance are few.
She could somehow start making thousands of dollars more. That would push her into a bracket where she would receive federal subsidies under the Affordable Care Act to pay most of her premiums and out-of-pocket costs. Tens of thousands of Idahoans who signed up for health insurance this year received those subsidies.
She could stop working — something she insists she will not do.
“I refuse to have to choose between health insurance and poverty,” she said.
I am not OK with the fact that it feels like it is an incentive in our state to live in extreme poverty.
Brittany Long, Twin Falls resident
A third option is to marry her boyfriend and enroll in his insurance plan. That’s likely. They are engaged.
She rejects the idea of marriage being one of few ways for low-income people to get medical treatment, though.
“We shouldn’t be put in that position,” she said.
‘ONE VOTE OUT OF 105’
Long sent an email this month to state Rep. Stephen Hartgen, R-Twin Falls. She wanted to tell him about her condition and how the Idaho Legislature’s decision not to expand Medicaid affects her.
Hartgen agreed to meet at some point in the future and invited other legislators — Rep. Lance Clow and Sen. Lee Heider, both Republicans — to join them.
He also suggested Long contact the hospital “and review her situation with the appropriate indigency authorities.”
The Twin Falls Republican told the Statesman that he feels for Long. Hartgen, who has Medicare Part A insurance, was in a wheelchair due to the immune disorder Guillain-Barré for much of the 2014 session, he said.
“I have some sympathy not only as a legislator but also as someone who’s had some medical issues,” he said.
As for opposing a Medicaid expansion, Hartgen said he advocated for a waiver, seeking federal permission for an alternate approach to Medicaid expansion. But, he said, “that view didn’t prevail.”
Hartgen voted for a House bill to further study a Medicaid expansion. But when the Senate returned its version of the bill, allowing the state to start the waiver process, he voted against it in a vote along party lines.
I was one of those both privately and in our caucuses and so forth, I felt like we should go ahead with some sort of waiver.
Rep. Stephen Hartgen, R-Twin Falls
“I’m only one vote out of 105,” he said. “The making of legislation is sometimes not as easy as the medical care itself. It’s a complex process, and it didn’t get completed in this session.”
He said there is a balancing act between helping Idahoans who need health care, “without incurring cost [or putting] the state in a situation which is unsustainable.”
Even if the legislature passed a Medicaid waiver bill during the 2016 session, it would take “some period of time” for Long and others to be enrolled in health insurance, he said.
4 Number of Idaho legislative sessions during which Medicaid expansion was considered. This year was the first time the Legislature held a hearing.
Asked whether he thinks the state is doing enough for people like Long, Hartgen said: “As a lawmaker, I guess my honest answer would be no. And that was why I was one who stood up and said we need to solve this problem. And waivers are viable. ... But we’re not playing God here; we’re trying to pass laws.”
Long has told Hartgen that she wishes Idaho’s lawmakers would take action.
“I ... unfortunately cannot wait for political tides to change to get help I need,” she wrote in an email to Hartgen.