January’s reset means the system restarts, but our bodies do not

January is supposed to feel like a reset — a clean slate and a fresh start. But for people with bleeding disorders, it often feels like the opposite.

Prior authorizations expire. Deductibles reset. Insurance coverage shifts. Nothing about my medical reality changes, but suddenly, everything about access to care feels uncertain again.

I live with hemophilia B and von Willebrand disease. That means I need prior authorizations for two separate clotting factor products.

For those who haven’t encountered the term, a prior authorization is an insurer’s requirement that care or medication be approved before it can be covered. Even when a medication is prescribed by a doctor and medically necessary, the insurer requires additional documentation before agreeing to cover it. This process can take a week or longer, and in the meantime, the medication is effectively put on hold.

In theory, prior authorizations are meant to control costs or ensure appropriate use. In practice, for people with chronic and lifelong conditions, they often function as recurring barriers to care.

While those authorizations are pending, everything feels precarious. I wait, hoping there won’t be a delay and that no bleed happens while the system catches up. I experience a constant undercurrent of anxiety that has nothing to do with my health and everything to do with paperwork.

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Access, yes, but also stress

January also means updating my manufacturer copay assistance cards. Essential financial assistance programs are available, and without them, many people simply wouldn’t be able to afford treatment. I’m grateful they exist. But access to assistance does not mean access without stress.

Here in Florida, there is no copay accumulator ban. That means the financial help I receive to afford my medication doesn’t count toward my deductible. So even with assistance, I’m not moving any closer to meeting my more than $7,000 deductible for the year.

So January becomes a month of layered stress, both administrative and financial. I’ve spent more than four hours on the phone with my insurance company and the specialty pharmacy I’m required to use, and despite doing everything asked of me, the billing for my January shipment was still wrong.

There’s a unique exhaustion that comes from this cycle. The phone calls that begin with, “I’m just calling to check on the status …” The emails asking for documentation that was already submitted. The waiting. The mental math. The quiet fear that if something goes wrong — if a bleed happens at the wrong moment — it won’t be my body that fails me first. It will be the system.

A system designed around short-term illness will always fall short when it comes to lifelong conditions. I’ve learned that struggling with January insurance hurdles doesn’t mean I’ve failed at managing my health. It means the system continues to struggle with the concept of chronic care.

Still, the work falls to us. We make the calls, submit the forms, and advocate, not because it’s empowering, but because there is no alternative.

If January feels heavier than it should, you’re not imagining it. This isn’t about poor planning or lack of organization. It’s about a system that resets on a calendar, while our bodies do not.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.