I find myself in a life changing situation and need to get insurance that will give me continuity of care. I need to be able to get an off-label prescription (Stelara) for Crohn’s disease (no it’s no FDA approved.) The shots by themselves are $20K or more. If somebody could help me, I’d appreciate it.
If you need a specific drug you should contact insurers that sell plans in your region and find out what plans sold on the Marketplace cover it.
If more than one plan covers it than you can compare cost sharing and benefits of those plans. If no Marketplace plans cover it, than you may get more value going with a non-marketplace plan (despite missing out on cost assistance).
With very expensive drugs the most important thing is that it is covered and then next is how many instances are covered and at what rate, cost assistance is a distant third due to the fact that all plans put a cap on maximum out-of-pocket costs for a year. Make sure that the drug isn't just covered, but that you'll have enough instances covered in-network to get you through the calendar year.
Typically for something like the shot for Crohn's that costs $20,000 we are going to be talking a high premium plan and potentially not one sold on the Health Insurance Marketplace (although sometimes similar generics are easier to find coverage for). The reason you want to call the insurer directly is that insurers are allowed to change what drugs they cover and at what level they cover drugs at their discretion. Calling and speaking to someone will give you a better idea if a plan currently covers the drug and will continue to cover it and at what cost sharing level.
If your income is low enough you can also check with your state Medicaid office to see if the drug is covered. If the drug is covered on Medicaid and your state expanded Medicaid it can sometimes provide the best value to make sure your MAGI household income is 138% or less for the year.
Lastly, all plans have to cover essential benefits. Essential benefits include drug coverage for essential health. Sometimes a doctor can speak to an insurer and get them to approve coverage for something they won't cover automatically.