But You Look Fine...
Disclaimer--while I'm a lawyer, nothing in this post or any others constitutes legal advice. If you have legal questions, please seek out a qualified lawyer licensed in your area.
I've spent most of my legal career dealing with insurance companies in one capacity or another. Mostly suing companies when they don't do what they are supposed to. I say this because I do have an inherent bias in how I look at insurance companies and how I deal with them. Ironically, I also have tons of insurance because I also like the safety net that insurance policies offer, even if it means I have to fight with them to do what the contracts say.
While I've represented lots of people dealing with a private insurance company denying their claim after they paid their premiums for years and decades, I didn't understand the emotional effect of having a claim denied. Clients would tell me that over and over how it affected them personally and I confess that I brushed it off time and time again. That personal affect just isn't usually legally relevant to a claim. Yet, it is part of the human cost of dealing with a denial of a claim and it's real.
Living with metastatic breast cancer
Now that I have stage 4 metastatic breast cancer (MBC), I've had to deal with multiple private insurance companies to obtain the benefits I need to stay alive. The emotional and mental cost of having to constantly justify my existence wears on me. It depresses me. It makes me feel as though someone else doesn't feel I'm worthy enough to be alive. I hate feeling that way and I've spent a lot of time trying to figure out how to avoid feeling that way.
Experiences navigating insurance policies
So, here's my list of recommendations created from my own experiences and those of people I've helped walk through this process before breast cancer took over my life and since when dealing with private insurance policies:
- Know your contract language – I don't meet many people who have read their contracts. I get it, most of them are incredibly long and have lots of dense language along with quite a few run-on sentences. It is important to know what is covered and what isn't along with what you are required to do and what the insurance company is required to do. For example, my health insurance company requires a pre-authorization for injectables like the Zometa I receive on a monthly basis. I know this and my cancer center knows this. My health insurance company told my cancer center on a recorded line for several months in a row that a pre-authorization wasn't needed. The insurance people at my cancer center do know what they are doing and they kept calling for the pre-authorization, which saved them when my health insurance company decided to start denying the invoices for a lack of pre-authorization that THEY said we didn't need.
- Empower your doctor to fight for you. – I have the instinct to minimize my symptoms too, so I get the desire to not complain, to not cause issues. From dealing with insurance companies for a few decades, I know that I have to be upfront and detailed about all my symptoms and what I can and can't do on a daily basis. I'm not suggesting that anyone fabricate or embellish what's going on, just to be thorough. For example, my cancer center has a symptom list that I fill out at every visit. There is a line for "memory problems." Because I don't have long term memory issues, I didn't check it off at first. When I complained about the chemo brain issues that I'd been experiencing and had a neuropsychological test to see how bad it was, a 20 point IQ drop was documented. Turns out, I should have been checking that box from the beginning since memory loss is intended to cover both short and long-term issues along with struggles to locate certain words. Now, my doctor has that information at every visit.
- Keep a diary of symptoms. – I have different symptoms day-to-day. When I change medication, my symptoms change. When my activity level is different, my symptoms change. As I've lost weight on my newest regimen, my symptoms have changed. I have chemo brain and don't remember all of what I dealt with yesterday or a week ago. Keeping a diary contemporaneously with the symptoms helps to ensure that you remember and that's admissible evidence to prove that the symptom actually happened - I say this because the insurance companies have risk managers who review potential issues and noting that a patient has documented their symptoms well may communicate to the insurance company that they shouldn't mess with you, at least that's always my hope.
- Ask others what they've noticed. – Someone living with you or seeing you regularly will notice things you won't. Your hairdresser or nail tech or physical therapist will notice things you don't. Get used to asking for their input and suggestions. There's a whole host of interventions I wouldn't think of, but someone who is trained to look at specific symptoms will notice changes.
- Prescription vs. over the counter (OTC) – I'm not a doctor, but I do know my body. I've worked really hard to avoid having to take narcotics for my pain. I also fill prescriptions just in case. I've found that insurance companies are much more apt to accept intervention by prescription versus OTC remedies, especially if those remedies aren't "mainstream." It's important to think about that and enlist your doctor's assistance in documenting everything you've tried, along with not refusing a prescription even if you just keep it on hand just in case.
In my opinion it's important to remember that insurance companies exist to make money. Maybe they have shareholders, maybe they are owned by their employees; regardless, insurance companies are not in business to help people. How they make money is to accept premiums and not pay out on claims. I don't say this so anyone gets angry at their insurance company for simply being a business, just as a reminder to keep in mind when dealing with insurance companies. While a patient or insured may be friendly with an adjuster or representative, that employee is looking for data that will help them, not you.
One last suggestion, which I heard from an insurance executive in Florida who spoke at a conference, is to write a letter to humanize you and your request and send it to the CEO. Most of the executives will never interact with a patient and are pretty removed from the front lines. By giving them information that humanizes you, it may be helpful in getting results. I've also found that posting on social media, especially twitter, about issues or bad behavior can often help as well. There's nothing like bad press to motivate a for-profit company to do the right thing.
Now it's your turn - what things have worked or not worked for you?
Have you gained new friends in your metastatic cancer journey?