PRESCOTT – Kirsten Hague has been dealt one blow after another, more than anyone her age should have to endure. But her spirit is strong and she’s facing her latest test with tenacity and more than a little spunk.

Hague suffered a cerebral venous sinus thrombosis, a rare type of stroke caused by a blood clot in the venous sinuses, and brain bleed in 2017. At age 25, she didn’t have the best insurance through her employer.

“I never went to the doctor; I thought I was invincible,” she said.

When she finally went for a checkup in May 2017, her doctor diagnosed her with polycystic ovary syndrome (PCOS), which causes weight gain, irregular menstrual cycles and insulin resistance. Her doctor prescribed birth control, which can cause blood clots, to help regulate the symptoms. Six months later, she had the stroke and ended up in United Hospital Intensive Care Unit for two weeks fighting for her life.

“The only symptom I had was a headache,” Hague said.

While on a road trip, she bought a gas station packet of Tylenol. She tried to sleep it off, but the pain was unbearable. Her mom, who is a Registered Nurse, urged her to go to the hospital when the headache didn’t lessen four days later.

“I had no normal stroke signs like numbness, tingling, not being able to think clearly. I just knew something’s not right,” Hague said.

She was on the floor of the emergency room with a pounding headache. The last thing she remembers is a nurse telling her to take out her piercings.

“I woke up a couple of times in the ambulance (on the way to United),” Hague said. “I don’t remember getting to the hospital. The doctor told our family, if you believe there’s a God, you better start praying.”

Somehow, she beat the odds. After two weeks, even though she admits to being a cantankerous, ornery patient, she was moved to a progressive care unit. She had to be intubated and pass a test to breathe on her own. When her breathing began to fail again, the breathing tube was put back in. However, due to her swollen throat from the removal of the tube, she began choking and had to have emergency surgery to get the tube out.

“I didn’t want to be there; I had an attitude,” Hague admitted. “I was there for another two weeks. I had to learn to write and walk again.”
Her sister bought her a whiteboard to write on. When she first tried, she wrote each letter on top of the other rather than moving across the board.

“My sister was very good at knowing what I was trying to say,” Hague laughed. “My mom, it was like playing charades with a wall.”

Before her stroke, Hague didn’t eat beef and “drank gallons” of coffee. After the stroke, she asked for a burger and couldn’t stand coffee.

She was put on Gabapentin, blood thinners, Depakote, the list goes on. Once she was home, the blood thinner medication wreaked havoc with her menstrual cycle; she lost so much blood she had to have two blood transfusions. This happened twice. After nearly 10 years of problems, she was cleared to have a hysterectomy.

“Clearly me and medications don’t get along. I wouldn’t have needed that had I not had the side effects to other medications,” she said.

The medications she’s on, along with the PCOS, have caused significant weight gain. She also has an active cerebrospinal fluid (CSF) leak, idiopathic intracranial hypertension, severe headaches, and increased pressure in her skull. A CSF leak is when a tear or defect in the skull base and the protective membrane (dura) surrounding the brain allows clear brain fluid to escape into the nasal cavity.

The brain fluid drips from her nose if she bends over or does too much physical activity. She had one procedure to seal the leak, but it didn’t work. The next option is brain surgery to install a stent. However, her doctors can’t perform the brain surgery until her body mass index (BMI) is drastically lower.

“My doctors have recommended bariatric surgery as an important step toward improving my health and giving me a better opportunity for successful treatment of my neurological condition. Unfortunately, my health insurance plan excludes bariatric surgery,” Hague said. “They said I had to consider other options.”

One insurance representative suggested Hague lift water bottles while sitting at her desk in an effort to lose weight. This was in response to Hague telling her she is not allowed to strain herself physically due to the CSF leak.

Hague has spent countless hours pursuing appeals, contacting insurance companies, researching other coverage, and reaching out to state officials.

“I even left a job I loved after accepting another position whose health benefits could provide the coverage I needed,” she said. “After I gave my employer 30 days' notice, the new employer rescinded my offer before I could start because they could not accommodate that notice period.”

A dietary director, she found herself without a job and without the insurance coverage she needed to allow her to move forward with bariatric surgery.

When she contacted the State Commissioner of Insurance, they told her Medica isn’t doing anything illegal by denying the surgery, because Wisconsin doesn’t require them to cover it.

“I said I know, but it’s wrong, it’s immoral,” Hague said. “The appeals board is basically a death panel. What is the point of an appeal if it’s not in your policy? What would be an example of an appeal that would go through? Does it ever go through or does it just fall on deaf ears? They said it’s all based on a case-by-case basis.”
Her neurosurgeon, neurologist and primary care provider provided letters to the insurance company appeal board explaining the need for bariatric surgery.

“I’ve had my doctor for 25 years. We’ve called insurance together and it doesn’t get anywhere. They get to decide who lives and dies, who gets covered and who doesn’t,” Hague said.

She also contacted her local District 30 Rep. Shannon Zimmerman (R-River Falls) for help. She said after two emails and a phone call she got a response.

“They told me I have to wait for the election (in November),” Hague said. “I’ve exhausted all my options. I don’t know what the next route is. Even if I do get covered, it doesn’t change the fact that other people aren’t getting things covered. What qualifications does someone need to tell people that they can’t have the surgery that they need? How we have made that okay as a society is also terrifying. I don’t know what the solution is, but I know it’s not what we’re doing.

Insurance gets to decide how I live, where I work. I don’t like that.”

Medica is mandated to cover bariatric surgery in Iowa and the Dakotas under its individual and family marketplace plans, Hague said. She even considered moving to Iowa, looking up their residency rules. She would have been two hours and 1 minute away from her new job before the offer was rescinded. She and partner Eric Most haven’t gotten married for insurance reasons.

“Nothing else changes except my address,” she said. “Make it make sense.”

The pressure is building in her brain. The CSF leak is worsening. Hague continues to search for a job with health insurance that would cover the bariatric and brain surgeries. She looks forward to the day when she can laugh again without it causing pain.

“If I belly laugh, I’m going to have a bad headache. Sneezing, coughing and I can’t breathe. Laughing is not a thing in my life,” she said.

Hague is at a high risk for an aneurysm or another stroke. This prompted her to look into going to Mexico for the bariatric surgery. Unfortunately, it’s not an option.

“If I go there and I have complications, then insurance will not cover any complications,” she said. “My history of complications is exactly what it is.”

In 2022, the day before she was scheduled to meet with the surgeon for bariatric surgery, Medica dropped the coverage. Then in 2023, it also stopped covering GLP-1 weight loss medications. She was on them for five months and lost 60 pounds before the company stopped covering them.

“They can drop medications and procedures whenever they want. Just kidding, we’re not going to cover it anymore,” she said. “But you can’t drop out of it until open enrollment. Why can’t we shop around for insurance whenever we want?”

Hague sees no other option at this time except paying out of pocket for the bariatric surgery, which will cost about $30,000. She can pay for it with a monthly plan, but she can’t afford both the payment plan and insurance premiums out of pocket.

“After exhausting the options I know to pursue, I have started a GoFundMe to help pay for bariatric surgery and the related medical expenses myself,” Hague said. “I want to be off most meds within five years. Weight loss could reduce the pressure in my head and I might not even need a stent.

“I am sharing my story because I know I am not the only person who has discovered that medically recommended treatment can still be excluded from an insurance plan.”

You can donate to Hague’s GoFundMe at gofund.me/6a35ca6da