Open enrollment is a treatment decision, and now is the time to make it

The letters start arriving in October. There are plan summaries, notices of benefit changes, and a glossy booklet with a smiling family on the cover. I’m fairly sure that family has never called a specialty pharmacy to ask where their delivery went.

For most people, open enrollment is a chore. Compare premiums, pick the one that stings least, click enroll, and move on. I can’t do that. If you live with a bleeding disorder, you probably can’t, either.

Medicare’s open enrollment runs from Oct. 15 through Dec. 7. The federal marketplace opens Nov. 1, and many employers run their own windows this fall. Whatever door you come through, the choice you make in the next few weeks decides something bigger than your monthly bill. It decides whether your treatment shows up in January.

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The premium is the least important number

When I review a plan, the premium is one of the last things I look at.

Clotting factor is expensive. Our therapies are expensive in general. Depending on the plan, one or two fills can carry me straight to my out-of-pocket maximum. That makes the out-of-pocket maximum the real price of the plan, not the premium. A cheaper premium with a higher ceiling is often no bargain at all.

After that, I look at the things that actually determine whether I can get treated:

• Is my specific product on next year’s formulary? Next year’s, not this year’s.
• What tier is it on?
• Which specialty pharmacies are in network, and is mine one of them?
• Will my prior authorization carry over, or does the clock reset on Jan. 1?

Any one of those can turn a routine refill into weeks of phone calls.

What I found buried in my own plan

The last time I went through my plan documents line by line, I found a copay accumulator provision.

If you haven’t run into one yet, here’s how it works: Many manufacturers offer copay assistance to help cover our share of treatment costs. Under an accumulator, that assistance still pays the bill, but it doesn’t count toward your deductible or your out-of-pocket maximum. So the assistance runs out partway through the year, and you’re facing your full deductible as if you hadn’t spent a dime.

These provisions rarely announce themselves. Sometimes they’re called accumulators. Sometimes they’re called maximizers. Sometimes they’re just a sentence about “third-party payments” tucked into a section nobody reads.

I also found language that made me question how my medical and pharmacy deductibles worked together. That’s worth checking in your own plan, too. Are they combined or separate? It changes the math more than you’d think.

I only found these things because I went looking. That’s the point.

My open enrollment checklist

Before I choose a plan, I want answers to these questions:

• Formulary: Is my exact product covered next year, and at what tier?
• Pharmacy: Is my specialty pharmacy in network? If not, which ones are?
• Prior authorization: Does my approval transfer, or do I start over?
• Step therapy: Will the plan require me to “fail” another product first?
• Costs: What is the out-of-pocket maximum? Are the deductibles combined or separate?
• Accumulators: Does the plan count manufacturer assistance toward my deductible?
• Care team: Are my hemophilia treatment center, hematologist, and lab in network?

If the plan documents don’t answer a question, I call. I write down who I spoke with, the date, and the reference number. A promise made on the phone is worth exactly as much as your notes from the call.

You don’t have to decode this alone

Many hemophilia treatment centers have social workers who help patients through exactly this. The National Bleeding Disorders Foundation and the Hemophilia Federation of America both offer insurance resources for our community. Your specialty pharmacy may be able to flag formulary changes before you commit.

This matters even more for women. Many of us were diagnosed late, after years of being told our bleeding was normal. We may have newer diagnoses and newer prescriptions. That can mean fewer years of claims history to lean on when an insurer asks for proof. Know what your plan requires before it asks.

January is a terrible time to learn that your plan won’t cover the treatment that keeps you out of the emergency room. October is much better. Read the fine print now.

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 consult your physician or another qualified healthcare 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.