Trust, interrupted.

Continuity of Care Is Not Optional in Chronic Disease

MS care, like any other industry, has its seasons.
Times when everyone is trying to squeeze in MRIs because out-of-pocket maximums have finally been met.
Times when cancellations rise because stepping outside in Texas heat feels unreasonable at best.

But perhaps the hardest season of all comes just after the new year, when health plans reset, coverage changes, and a wave of reauthorizations begins. Too often, that wave brings something else with it: denials for medications and therapies that had already been approved and were working.

This happens when employers switch insurers, when plan structures change, or when individuals are forced to select new coverage in the marketplace. These decisions are almost always driven by cost. But the downstream consequences are not abstract, they are deeply human.

2026 has been an especially difficult transition. With new federal policies, rising healthcare costs, and increasing consolidation in provider markets, we are seeing sharp increases in premiums and significant instability, particularly for small employers and individuals. I am not an economist, and I won’t attempt to unpack all the “why.” What I can speak to are the consequences for people like you and me, and especially for those living with chronic illness like MS, where staying on a treatment that works is essential not just for daily function, but for preventing future disability.

So let me tell you what I am seeing.

Over the past few months, more patients have walked into my office telling me their premiums doubled, from ~$600 to over $1200 per month, forcing them into plans that “don’t cover much.”
I have had patients ask me if there is any other way to access their treatment because they are being priced out of insurance entirely.
I have seen medication costs skyrocket to the point where patients are choosing between their health and putting food on the table.

I have seen our nurses work tirelessly to prevent gaps in treatment after plan changes.
I have seen medications that kept patients stable for years suddenly denied because they are not on a new formulary.
I have spent evenings writing urgent appeal letters, while my children waited for me to finish work that no one reimburses.

I have seen “STAT” appeals downgraded to non-urgent, leaving patients waiting months for decisions that cannot wait.
I have seen avoidable hospitalizations while we sit in those queues.
I have seen the look on patients’ and care partners’ faces when yet another appeal is denied.

Preventing someone from accessing a therapy that has kept them stable is not only morally wrong, it is economically irrational. It requires a kind of magical thinking to believe that a patient who achieved remission on a high-efficacy therapy will remain stable without it, or on a lower-efficacy alternative. And yet, this is exactly what the system repeatedly asks us to accept.

When patients are forced off effective therapies, we see what follows: relapses, hospitalizations, loss of function, costs that are far greater, both financially and humanly, than the treatment that was working in the first place.

The disregard for continuity of care reveals how far we still are from a truly person-centered system. Clinicians continue to advocate through peer-to-peer calls, appeal letters, and external reviews, often in hours that go unseen and unreimbursed. Meanwhile, entire plans of care can be dismantled by insurers with little explanation, and evidence of long-term stability is often not enough to secure continued access.

Patients are left with impossible choices: navigate complex assistance programs that require time and resources they may not have, or switch to a therapy they are not confident will work as well. For people living with a chronic illness, changing medications can feel like a monumental decision even when it is necessary. Being forced into that change erodes trust in ways that are hard to rebuild.

For clinicians, this work is now part of care, but it comes at a cost. In a system driven by productivity metrics and volume, this added burden contributes to burnout and, increasingly, to clinicians leaving medicine altogether.

Current “continuity of care” protections, often called transition-of-care laws, offer only partial relief. At the federal level, they focus primarily on maintaining access to providers, not medications. At the state level, protections are inconsistent and typically temporary, offering a bridge of 30 to 90 days at best.

In practice, these laws provide a window, not a guarantee. They buy time to appeal, to request exceptions, to scramble for alternatives. But they do not ensure that patients can remain on the therapies that are keeping them well. For conditions like MS, where treatment interruption carries real risk, this gap between temporary protection and long-term stability is not just inconvenient, it is dangerous.

A more person-centered approach would embrace a simple principle: stable patients should remain on stable therapies.

This would mean requiring insurers to honor effective treatments after plan changes, mandating continuity of medication coverage for chronic conditions, and limiting step therapy when a patient has already demonstrated benefit. It would mean faster, clinically informed appeals and greater transparency around denials.

At its core, it would shift the system from prioritizing short-term cost containment to protecting long-term outcomes, function, and trust.

These protections are even more critical for people living with rare diseases. For them, finding a treatment that works can take years, years of uncertainty, dismissal, and searching. When a therapy finally makes a difference, it is not just a medication, it is a lifeline.

To have that lifeline suddenly taken away is a level of suffering that is difficult to put into words.

We can do better.

We cannot accept a system where patients are destabilized because their employer changed plans or because costs continue to rise. We cannot accept that formularies shaped by rebate negotiations take precedence over clinical judgment, lived experience, and common sense.

And we should not accept that staying well is treated as optional.