She needs Botox to treat multiple sclerosis, but her insurance denied coverage. Company now promises an 'internal review.'

Sarah Hwang works to attach the vest of her service dog, Goblin, a five-year-old black lab, on Dec. 14. Hwang, who was diagnosed with multiple sclerosis in 1999, said insurance companies often refuse to cover the medical treatments she is prescribed for her disorder.
Sarah Hwang works to attach the vest of her service dog, Goblin, a five-year-old black lab, on Dec. 14. Hwang, who was diagnosed with multiple sclerosis in 1999, said insurance companies often refuse to cover the medical treatments she is prescribed for her disorder.

For the first 10 years after Sarah Hwang’s multiple sclerosis diagnosis in 1999, she had a relapsing form of the disorder.

Relapses came with blurred vision or numbness in one of her limbs. Then, she’d recover until it happened again.

Over the past five years, Hwang, 52, said her symptoms have worsened, limiting her ability to walk. At the same time, her health care plan has called for “more doctors, more procedures, more medications, more therapy,” the Milwaukee resident said in an email to the Public Investigator team in November.

As Hwang’s needs grew, how much she had to advocate for her care to be covered by insurance also grew “to an unreasonable level,” Hwang said. All her treatments required pre-authorization, she said, and nearly every treatment would be denied, even after she’d try to appeal the denial.

“It’s stress inducing and exhausting, neither of which help living with MS,” she said.

In October, her struggles came to a head when Madison-based pharmacy benefit manager Navitus refused to cover the injections she needs to control her muscle spasms unless she tried a cheaper alternative — one that she said her doctor doesn't use on MS patients due to negative side effects. It sparked a monthslong battle with insurance that she says still isn't fully resolved.

Hwang’s experience represents a widespread issue among people with multiple sclerosis. MS is a chronic disease in which one’s immune system attacks the central nervous system, impacting the brain, spinal cord and optic nerves.

According to the National MS Society, multiple sclerosis looks different for everyone, but some common symptoms include pain, blindness, numbness, tingling, and fatigue.

Experts say navigating the health care system comes with unique challenges for individuals with MS, who often rely on a variety of expensive specialists and medications.

And a lengthy, confusing road to coverage is far from just an inconvenience for people with MS.

“We have a saying in MS: ‘Time equals brain,’” said Kasey Minnis, a spokesperson for the Multiple Sclerosis Foundation. “MS is a disease that causes scarring in the brain. And when it's not effectively and properly treated, that scarring is permanent and leads to disability.”

Botox injections used in MS patients to reduce muscle spasms, prevent falls

Hwang's symptoms began to worsen around 2019, including more flare-ups, intense cramping in her foot and an inability to move her toes, she said. That year, a fall from a muscle spasm in her hip resulted in her left leg — her "good leg” — breaking in two places.

Hwang has been receiving Botox injections every three months to relieve her muscle spasticity and reduce her risk of falling ever since. After 9 to 10 weeks, she says the effectiveness of the treatment begins to diminish and her muscles begin to tighten again.

"If you don't want to go out because you're afraid of falling, you can't just go about your day without constantly thinking, 'I have to be really careful," Hwang said. "It's a very complicated lifestyle for people. Botox eases that for me — the physical, the mental and emotional experience of having to constantly be aware of every move that I make."

The injections were administered by a physiatrist at Aurora Health Care, with whom Hwang built a strong relationship and rapport.

Hwang at her home in Milwaukee on Dec. 14, 2023.
Hwang at her home in Milwaukee on Dec. 14, 2023.

However, in September, after her husband began a new job at UW-Madison, Hwang had to switch to Dean Health Plan for her health insurance and Navitus for prescription drug coverage. Both are small, Madison-based companies owned by not-for-profit health system SSM Health.

On Oct. 6, Hwang received the first insurance denial from Navitus for her injections. Her doctor appealed the decision, which was met with another denial from Navitus on Oct. 25.

Even after a peer-to-peer review, in which her physician discussed with Navitus why Hwang needed the medication, she was denied for the final time in early November.

“(Insurance is) saying I don't meet the eligibility criteria and, by that, they're specifically saying I have not tried and failed on a different drug called Dysport,” Hwang said.

Dysport is a generally cheaper option than Botox. However, Hwang said her physiatrist doesn’t like to use Dysport on MS patients because she finds that it makes them too weak.

Requiring patients to try and fail on cheaper, similar-acting medications is called “step therapy."

Some insurance companies use this "fail first" method to get patients on cheaper treatments. However, multiple sclerosis advocates said the harm imposed on patients outweighs the potential financial benefits.

"We are very much against step therapy for people with MS," Minnis said. "It just doesn't make sense for insurance companies to be requiring them to accumulate more damage in their brain and more disability in order to get on to an effective medication."

To make matters worse, Hwang said Dean Health Plan covered her doctor, but not the facility her doctor works in.

Hwang said Dean did not explain how it expected her to see an in-network doctor at a facility that was out of network.

“That just seems kind of unreal to me,” she said.

Navitus promises internal review into member experiences

With her Nov. 17 injection appointment rapidly approaching and no solution in sight, Hwang was looking at a potential copay of $730 for her Botox treatment.

She reached out to the state’s ombudsperson for public employees for help. It wasn’t until she connected with the ombudsperson on Nov. 28 that she found out her doctor should've requested pre-authorization through the Dean Healthcare Access Plan, not Navitus, as she had originally done.

As far as her doctor's facility being out of Dean Health Plan's network, Hwang also learned from the ombudsperson that, since she had out-of-network benefits, Dean would cover 60%. Then, at least 80% of the rest of the cost would be covered by her secondary insurance provider, Medicare.

By this point, it had been about two and a half months since her initial request for treatment pre-authorization.

“I’m so angry that Navitus nor Dean neglected to tell us all of this and wasted everyone’s time, and caused unneeded stress,” Hwang wrote in a message to her physiatrist.

The Public Investigator team contacted Dean Health Plan and Navitus, seeking insight into why the companies could not find Hwang a solution and advice for patients in similar situations.

In a written statement, a Navitus representative said the medication was initially denied “in accordance with the plan sponsor’s benefit design.” However, the company confirmed the medication was later re-submitted and approved for coverage by Dean Health Plan.

Navitus acknowledged "the multiple steps the member and prescriber had to pursue to achieve the desired outcome. That is suboptimal."

“Required coordination across multiple entities can sometimes introduce silos and points of disconnect,” the statement read. “This member’s experience is an unfortunate example of that.”

Navitus said an internal review is underway to assess member experiences and find ways to help them navigate their benefits in a more timely fashion.

Dean Health Plan refused to comment on Hwang's situation, citing "the privacy of our members’ personal and medical information."

Even after Hwang gave Dean explicit permission to speak about her case, the insurance company said it "cannot comment on the specifics of a member's health care or coverage."

The company advised Dean Health Plan users who encounter challenges with coverage to visit the grievance and appeals page on the Dean website.

More: If you're having a health insurance dispute in Wisconsin, these organizations may be able to help

Adam VanSpankeren is the manager of Covering Wisconsin's Navigator Program, which connects people with help from health insurance experts.

He said he helps many people whose difficulties in receiving coverage could've been solved earlier if not for miscommunications, like the ones that led to Hwang's denial.

"That's so stressful, having to do it appointment by appointment, symptom by symptom, when you really should just be able to focus on your treatment plan and feel confident that the things are going to be covered," VanSpankeren said.

Many people with multiple sclerosis struggle to navigate the health insurance system

Minnis, of the Multiple Sclerosis Foundation, said much of the difficulty MS patients face in navigating their coverage is rooted in the fact that the disease is so costly to treat.

“Because the drugs are so expensive, typically they require preauthorization, or there may be other steps involved in getting those medications,” Minnis said.

Steffany Stern, vice president of advocacy for the National MS Society, said Botox is one medication that people often have to jump through hoops to receive.

“I have heard from people with MS that they have had a hard time getting Botox covered for their symptoms, even though it makes a huge difference for a lot of people with MS in their quality of life, and helps them a lot,” Stern said.

This isn’t the first time that switching insurance companies set Hwang back to square one. Every time her husband would start a new job, it would come with a reset, she said, starting the process all over again.

“We keep learning new and more complications each time he changes his job,” Hwang said.

Stern said Hwang isn’t alone in her struggles with changing insurance plans.

“I know a lot of people with MS who will do anything not to change insurance because they don't want to have to start over again and justify (their treatments) to their new health insurance provider,” Stern said.

More: Our Public Investigator team wants to solve your problems

Experts in the community say they're working to expand resources and advocate for federal legislation to help people with MS navigate the health care system.

In August 2022, the Inflation Reduction Act was signed into law, which caps out-of-pocket costs for Medicare users. For example, starting in 2025, yearly out-of-pocket costs for Medicare Part D beneficiaries will be capped at $2,000.

While this is a win for people with multiple sclerosis or cancer who often rely on high-priced drugs for their conditions, the cost of medication remains high, Stern said. According to a 2022 study by the MS Society, the average cost of living with multiple sclerosis is $88,487 per year.

The National MS Society is advocating for changes to the health care system to make treatment more accessible. For example, the organization is trying to increase the number of pharmacies that MS patients can choose from. The organization also calls for legislation that will require prior authorization to happen before someone with MS leaves their provider’s office.

Treatment for multiple sclerosis often involves a lot of different providers like neurologists and physical therapists who prescribe many treatments and medications, Stern said.

"The person with MS can be trying to navigate lots and lots of approval processes, basically to access even the benefits that their health plan explicitly said that they will cover when they signed up,” she said.

Despite promise that treatment will be covered, fear remains

After her monthslong effort, Hwang said Dean Health Plan confirmed in late November, after she had already had to miss her regularly scheduled appointment, that her Botox treatment will be covered going forward, no pre-authorization necessary.

The update provided some relief for Hwang, who will soon join a 10-week study at Marquette University that is testing whether physical therapy and rehabilitation can alleviate MS symptoms.

However, Hwang still worries about running into more coverage troubles when she schedules her next Botox treatment in March.

"I guess I won't really know if I'm covered until they actually put in the claim," she said. "I think part of the frustration is not knowing how to go about it and who to reach out to. I could be saving myself some time and energy if I knew the best way to navigate this."

Resources, support groups for people with multiple sclerosis in Wisconsin and nationwide

After Nicholas Overton was diagnosed with MS in January, he quickly learned of the prolonged process to receive insurance coverage. As the creator of the Multiple Sclerosis Foundation's LGBTQ+ peer support group, he wants people to know that resources and support groups are available.

“You meet wonderful people that can help you navigate this disease. You don't have to do it alone," Overton said.

Here are some resources for people with MS:

Quinn Clark is a Public Investigator reporter. She can be emailed at Follow her on X at @Quinn_A_Clark. Tamia Fowlkes is a Public Investigator reporter. Reach Tamia at 414-224-2193 or Follow her on X at @tamiafowlkes.

About Public Investigator

Milwaukee Journal Sentinel | Public Investigator
Milwaukee Journal Sentinel | Public Investigator

Government corruption. Corporate wrongdoing. Consumer complaints. Medical scams. Public Investigator is a new initiative of the Milwaukee Journal Sentinel and its sister newsrooms across Wisconsin. Our team wants to hear your tips, chase the leads and uncover the truth. We'll investigate anywhere in Wisconsin. Send your tips to or call 414-319-9061. You can also submit tips at

This article originally appeared on Milwaukee Journal Sentinel: Multiple sclerosis patient speaks out about health coverage dispute with Navitus, Dean Health Plan