My first was when they were still trying to figure out if I did have Crohn's after a rather fast diagnosis was put into question. My doctor at the time wanted to order the now standard-of-care capsule endoscopy to get a better look at my small intestines (where my disease is pretty much isolated to). He couldn't get there with "the hose" (i.e. colonoscopy). A procedure widely used today was considered "experimental" in 2003, so I never received it. Instead of covering this procedure, they did go on to cover thousands upon thousands of dollars of tests that ultimately came back inconclusive. Because, you know, that made total sense.
My second time they came to the table was when my doctor wanted to put me on Humira; again, a now standard-of-care medication in treating Crohn's disease that at the time (2005-ish) was considered "experimental." It was FDA approved for Rhematoid Arthritis, but clinical trials were ongoing in the IBD world. My insurance company told me I'd have to go into a clinical trial at a university here in Chicago, demonstrate some response on it, and then they'd cover it. Thankfully it was an open-label trial and I did receive the drug, which worked quite well. Later on, after about 9 months in the trial, I was told be someone else at the same insurance company that I really shouldn't have been forced to do that.
Now, I face my third denial. This time it's not for something considered experimental, as in the past, but for an FDA approved medication that I've taken in the past, as recently as 2011: Cimzia. The irony? My current insurance wants me to take Humira instead. Sure, they don't know the whole back story of my personal journey with Crohn's medications, but I found that kind of funny. My doctor's office appealing, which can take up to 60 days. It's like Cousin Eddie in the Vacation movie series keeps showing up to my house.
Thankfully, I'm not in a major flare up. Really, it's quite mild and wouldn't be an issue for me if I wasn't 7 months pregnant. The whole point of me even starting the Cimzia now is to keep any activity at bay and prevent any complications, either during the last 2 months of the pregnancy or shortly thereafter. The best part of this is the appeals process, if it takes the typical 60 days, will bring me to October 7th, which is 15 days before my scheduled c-section. Add in however long it'll take the mail-order pharmacy to get the medication to me, we're probably looking at under 2 weeks to get started with a medication that takes several weeks to get loaded into ones system.
But hey, my insurance company may save a few bucks a month if I go on the older drug. So it's totally worth it.
Unfortunately, my story isn't unique at all and it's probably less rife with fights with insurance companies than others out there. So what can one do when insurance gets in the way? Here are a few tips:
Always Appeal. I'm pretty sure that there's some automated system that just kicks out denial letters when a certain set of criteria are met for a request for coverage. The insurance company wants you to stop there. Don't give in.
Review Your Plan. Some insurance companies make their coverage policies available online, where you can see if a treatment or procedure is covered. If yours does not, request a copy, sometimes called the "Evidence of Coverage."
Review Research. Look into what research has been done on the treatment or procedure you need. A great online tool is Pubmed, which lists abstracts from most medical research. Find evidence to support that what you're asking for does work for your condition and include these studies in your appeal.
Utilize Your Doctor and his/her Staff. A good doctor will be an active participant in your appeals process. Ideally, they'll handle the whole process for you by filling out paperwork, writing letters, or speaking to the "experts" on the insurance side on the phone. If you're not getting enough support from your doctor's office, be persistent.
Take Names and Notes. Document every conversation you have with your insurance company, including the name/employee ID of any person you speak with about your appeal.
Call Your HR Department. If you get insurance through your employer, your human resources department may be able to help by explaining your plan in more detail, advocating on your behalf, or connecting you with documentation or resources to assist with your appeal.
Appeal Denied? Appeal Again. There are at least a few steps to the appeals process that you can go through before the door is totally closed. Even though you may feel defeated or exhausted by the whole thing, don't give in.
Contact Your State. 44 states have an insurance regulator who handles health insurance appeals. As each state's policies are different, you'll want to contact the office in your region to get information about how to appeal.
Use Expert Resources. There are many organizations available to help you with the appeals process, including the Patient Advocate Foundation, ACAP, or HealthAdvocate. Some are non-profit and will help for free, others may require you to pay for their services.