When Lisa Emrich, a 57-year-old writer and musician from Falls Church, VA, who has lived with multiple sclerosis (MS) for nearly two decades, lost her job this spring, she didn't just worry about her next paycheck. She was terrified she might lose the stability she had fought so hard to maintain with her neurologic care.

For about 15 years, Emrich had relied on an individual health insurance plan she purchased as a self-employed freelancer. “I was grandfathered into that plan, and it was really good,” she says. “I had a $100 deductible and a $2,500 out-of-pocket maximum, which made it very manageable.” That coverage reliably paid for her rituximab infusions, the therapy that had kept her MS symptoms under control.

In 2022, she took a corporate job and moved to her employer's Blue Cross Blue Shield plan, which fortunately had her neurologist in network. “It also covered my medication as long as it was administered in my doctor's office,” Emrich says. “I did have to switch to getting it at the hospital infusion center, but it was still covered.”

The change, however, came with a much heavier financial load. “That employer plan, once I added my husband, had a $6,000 deductible for both of us and a $9,000 out-of-pocket maximum,” she explains. “It was a big jump from what I was used to.” To manage the costs, Emrich chose a version of the plan with lower premiums, balancing the risk by relying on manufacturer copay assistance to help cover her medications.

So when her job ended in 2024, the uncertainty returned. She initially was able to use COBRA (Consolidated Omnibus Budget Reconciliation Act; see below, “Understanding Insurance Terms”), as her employer covered the premiums for four weeks as part of her severance—but the transition was far from smooth.

“I had to cancel appointments for nearly two months while waiting for COBRA coverage to be confirmed,” Emrich says. “I didn't want to risk having claims denied and paying thousands out of pocket. But that delay meant I was off schedule for my infusions, and I started noticing symptoms flare up.” And once her employer's contribution ended, she was back to paying.

Emrich's neurologist reassured her that long-term use of rituximab meant she might be okay with a short delay, but she knew the stakes: “Rituximab has been a wonderful med for me. I've been stable, and access is extremely important.”

Losing or switching insurance coverage can be stressful, from COBRA delays like Emrich experienced to needing yearly prior authorizations. But this expert advice may help you keep both your medications and your neurologist within reach.

What Really Happens When Coverage Shifts

Jonathan Santoro, MD, a pediatric neurologist at University of California, Los Angeles, and a member of the AAN's Health Policy Subcommittee, says the most immediate concern is losing access to established treatment. “Nobody wants to change their therapy when it's effective. But if a medication is suddenly not on the formulary as part of a new health plan, that puts patients at risk,” he explains.

The second challenge is maintaining continuity of care with specialists. “Neurology is unique in how many subspecialists there are—epilepsy, MS, movement disorders, neuromuscular,” Dr. Santoro says. “If a patient has to change neurologists, they may be forced into a new system with a different electronic medical record, a different formulary, and a doctor who doesn't know their history. That disruption can be very destabilizing.”

Emrich's crisis came suddenly, but for some patients, the disruption is an annual event. Elizabeth Arant, 43, of Phoenix, AZ, has lived with migraine since childhood and developed chronic migraine as a teenager. Later, she also was diagnosed with intracranial hypertension, which has required surgeries and ongoing care from a team of neurologists and specialists. Because she is on disability, she qualifies only for Medicare Advantage plans.

“Arizona doesn't allow people under 65 to get a Medicare supplement, so I'm basically pigeonholed into Advantage plans,” she says. “And every year, it changes. I haven't had two years with the same company—they drop the plan or stop offering it in my state.”

That churn brings stress and administrative headaches. “Every year I have to get all new prior authorizations—Botox [onabotulinumtoxinA], Ubrelvy [ubrogepant], everything. It slows down my medications, it adds work for my doctor's office, and it's stressful for me,” Arant says. To cope, she prepares ahead. “I try to stockpile my migraine meds during the year if I can, because I know January is going to be a hassle.”

Because her part-time job does not provide health insurance benefits, Carrie Dickinson, 50, of Indianapolis, IN, relies on her husband's health care coverage to manage the migraines she has lived with since puberty. When he was laid off in 2023, they turned to their state's Affordable Care Act (ACA) Marketplace. But the plan wouldn't cover her primary medications, topiramate extended-release (Trokendi) or rimegepant (Nurtec), and said no to her attempts to get a prior authorization or appeal. She eventually qualified for manufacturer patient assistance for topiramate, but access to rimegepant has remained difficult, and she sometimes relies on samples from her clinician. These medications, she emphasized, are central to managing her migraines and maintaining her daily functioning.

Stopgaps and Safety Nets

So what are the options if you lose your coverage? One possibility is COBRA, which lets you continue your employer's health plan for up to 18 months if you pay the full premium yourself. “COBRA can be a great bridge, especially for short-term job loss or transitions,” Dr. Santoro says. “But it's very expensive, and not everyone can absorb that cost.”

Patients also might qualify for a Special Enrollment Period through HealthCare.gov if they lose coverage midyear, allowing them to purchase an ACA Marketplace plan. Depending on income, Medicaid or state-based assistance programs may be an option, too, though eligibility varies widely.

“It's very much a state-based system,” Dr. Santoro explains. “Each state has its own solutions, which makes it complicated and sometimes confusing.”

That's where navigators come in, says Kaye Pestaina, JD, who directs the Program on Patient and Consumer Protections for KFF, a health policy organization. “Marketplace plans are required to fund navigators—trained individuals who provide free, unbiased assistance to help people understand their options, complete applications, and even file appeals. They can sit down with you, go through the plans available in your state, and make sure you know what's covered before you choose. For patients with chronic neurologic conditions, that kind of guidance can be essential.” (To find people in your area who can assist you, visit Find Local Help.)

Another place to check is your state insurance commissioner's office—a government agency that regulates insurance in every state, though many people don't know it exists. “They can point you toward available resources,” Pestaina says.

And while many people rely on insurance brokers, Pestaina notes that patients with chronic illnesses may need more than a broker can offer. “Agents and brokers can help you enroll in a plan, but they may not give you the personalized attention that someone with a chronic illness would need,” she explains. “Navigators and consumer assistance programs are designed to provide that extra support, helping you find a plan that will cover your neurologist, your prescriptions, and your ongoing care.”

Arant has worked with brokers during open enrollment and says she couldn't manage the process without one. “Using a broker has been great for me just to go through the different options and weed them out,” she says. “It would be extremely difficult for me to go through all the different options and see what fits. It's very complicated.”

At the same time, she notes, brokers can't account for all the realities of living with chronic illness. “They don't really understand the nuances of having a chronic condition. They can tell you what's available, but they're not focused on whether your treatments are actually accessible.”

Despite the constant churn, Arant so far has been able to keep her treatment team intact, including her neurologist, neurosurgeon, and neuro-ophthalmologist. But each new plan year still creates ripple effects for them.

Leaving the Network

Sometimes it's not you who changes insurance—it's your insurer that changes its contracts. Emrich once received a letter from her neurologist explaining that his group might soon be out of network unless insurers agreed to new terms. He urged his patients to advocate with their employers.

These situations can leave patients scrambling. Brian Callaghan, MD, a neurologist at the University of Michigan, advised patients to start by communicating with both their provider and their insurer, since contracts are sometimes still being worked out. If the provider does end up out of network, he says, “neurologists often know colleagues in network and can help point patients in the right direction.”

For Emrich, navigating coverage changes has been exhausting, but she's found silver linings. “One thing I learned is not to assume COBRA is always the most expensive. In my case, Marketplace coverage that included my doctors would have been twice the cost. COBRA was actually the better deal.”

She also emphasizes the importance of planning ahead. “If I had known how long it would take to activate COBRA, I could have scheduled infusions while I was still covered. Instead, I was caught off guard and ended up with delays I wish I could have avoided.”

Today, Emrich remains covered through COBRA while she searches for a new job, though the process hasn't been seamless. After a two-month delay earlier this year, her infusion schedule is back on track, and she remains stable on rituximab. But she knows her situation is temporary. COBRA lasts only 18 months, and with her former employer changing health plans next year, her benefits will change too. “I just hope it's only a money issue and not a network issue,” she says.

Arant prepares each fall for another round of plan changes and paperwork. “Every year in January, I know it's going to be a hassle,” she says. “The best advice I can give is to be proactive with your doctor's office—let them know as soon as you're changing insurance so they can start getting the paperwork ready.”

For Dickinson, the lesson has been the importance of persistence. “I've had to keep fighting for coverage, even when the process was exhausting,” she says. “The system doesn't make it easy, but you have to keep pushing or you risk losing the care that keeps you functioning.”

While the system can be daunting, experts agree on three key strategies: be proactive, be organized, and don't be afraid to ask for help—from your doctors, from insurance navigators, or from advocacy groups.

Dr. Callaghan emphasized that patients don't have to go it alone. Neurologists can step in, too.

“If patients let us know early, we can usually do something to help,” he said. “But if we don't hear about it until later, it's harder. Neurologists want to support their patients, but we need to know what the issues are.”

Understanding Insurance Terms

Insurance jargon can feel overwhelming. Here are some common terms and what they mean for you:

Premium: The amount you pay every month for your insurance plan, regardless of whether you use it.

Deductible: The amount you pay each year before your insurance starts covering services. For example, if your deductible is $2,000, you pay that out of pocket before coverage kicks in (except for some preventive care).

COBRA (Consolidated Omnibus Budget Reconciliation Act): A federal law that lets you keep your employer-sponsored health insurance for a limited time (usually 18 months) after losing a job or having your work hours reduced. You typically pay the full premium yourself (unless your employer agrees to cover all or some of it as part of a severance plan), which can be costly. It can ensure you don't have a gap in coverage until you find a new job or plan, however.

Copay: A fixed amount you pay for a covered service, such as $20 for a doctor's visit or $50 for a prescription.

Coinsurance: A percentage of costs you pay after meeting your deductible. For example, if your coinsurance is 20 percent, you pay 20 percent of the bill, and insurance pays 80 percent.

Out-of-pocket maximum: The most you will pay in a year for covered services. Once you hit this amount, insurance pays 100 percent of covered costs for the rest of the year.

Formulary: The list of drugs your insurance plan covers. Medications not on the formulary may require an appeal or may not be covered at all.