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Navigating the Nightmare of American Health Insurance

As I've shared on this blog and elsewhere, I've lived with chronic illness for 20 years. All of those years I've lived in the United States. In that time, I've had medical coverage with at least seven different insurance plans, each with their own network of doctors and formulary of medications they will cover.

Over the last two months, I've been battling with insurance to get two medications covered that are critical to keeping my migraines more manageable. Basically, these medications are the primary treatments that enable me to actually work (freelance or otherwise), rather than spending all day, every day sick in bed.

Which has me thinking a lot about health insurance.

We're All In This Insurance Nightmare Together

A lot of people think of health insurance as a backup plan—until the day they face a health emergency or a crushing medical bill.

I never had such a luxury.

Most of my adult life, I've been the only person I knew who understood all the inane ins and outs of U.S. health insurance coverage. I've regularly advised friends and family on how to evaluate and choose between insurance plans, and how to fight for treatment coverage when needed.

But this past week, I met someone on Zoom for work purposes and we unexpectedly fell into a conversation about navigating U.S. health insurance with chronic illness.

It was sad yet funny that, even with completely different illnesses, so many of our experiences were the same—and so was our takeaway:

Our fragmented health insurance system makes living with chronic illness difficult and time consuming in ways that have nothing to do with actual illness.

Hard-Fought Health Insurance Tips and Tricks

So, we know the U.S. health insurance system is challenging. Here's what I've learned personally (and that my new colleague also shared):

  • If you find a great specialist, consider sticking with them. Today, most U.S. insurance plans don't have out-of-network coverage, meaning you can only see a certain set of providers. If you're on an ACA exchange plan your provider selection will likely be even more limited. I currently have overall excellent insurance through New York State for the next year, but none of my current doctors are in-network. That means that if I see them, I pay the cash price out of pocket, which can often be higher than what a health insurance plan would pay that same provider. With my particular chronic illness, I have a neurologist who has treated me for years, who knows the ins and outs of my case, and who is highly committed to keeping me functional. In cases like this, if there's any way to afford it, continuing to see your specialist may be worth it. Especially if your great doctor has great office staff.

  • Great doctors with great office staff are the absolute best. While you want to see a great doctor when you're sick, it's actually your doctor's office staff who will be the ones keeping your preauthorizations and appeals (to cover procedures or medications) on track. This is critical. Your insurance only wants to hear from your provider (or their office). They won't listen to you.

  • No matter how great your new insurance coverage may be, you still have to start your medication prior authorizations (and appeals) from square one. If you're lucky enough to find a treatment protocol that works, switching insurance is brutal. Every insurance has their own formulary. That means certain meds (generally those that are not yet available as generics) require multiple levels of paperwork before they will be covered. This process can take weeks, even months. That whole time, you're worrying about the inevitable pain and disability that will be caused if you have to stop taking the med (because you've inevitably been there before). You may also be calculating how many refills you can afford out of pocket. This is the spot I've been in lately. That's why the next tip is critical.

  • Stockpile critical meds. Because each insurance company has its own formulary and insurance companies can change their formularies, you can't leave your day-to-day functioning to the vagaries of paperwork. The answer: stockpile critical meds. For example, my neurologist uses an "amerge protocol" when I have a migraine that goes on for several days. This requires taking half-doses of the triptan amerge 2-3 times per day for about a week. This uses about 10-12 tablets per treatment regimen. My last insurance covered only 4 amerge tablets per refill. So that meant filling the medication as often as possible so I had the appropriate amount of medication on hand for emergencies. If you're switching insurance, you'll want ideally three months of medications while you sort through the vagaries of the prior authorization and appeal process. The more expensive the medication, the more critical this becomes.

  • Search for cheap meds. Every pharmacy charges a different out of pocket cost for medications, including generics. You can call around or search online to compare prices. A great tip I recently got was Cost Plus Drugs. I've never seen generic medication prices this low.

  • When fighting for coverage, call repeatedly until you get a rep who will actually help. My mom taught me this trick. Insurance reps are just people, each with their own backgrounds and expertise. If you call enough, you may be lucky and get someone who not only wants to help, but has a couple tricks up their sleeves to do so.

  • Yes, you can negotiate with providers. The reality is that providers accept different payment amounts from different insurance companies. Many providers, especially ones working within major hospital networks, charge self-pay patients higher rates than they get from insurance. If insurance companies are negotiating with providers, you should too. Honestly, just ask. Then ask again. At least half the time you can get your bill written down.

  • Always have a backup plan. So far, I've won one battle for medication coverage and the other is still "pending." But I'm stubborn. I always have a backup plan. Or three. You can appeal your health insurer's coverage decisions at the state level (I've done one appeal in the past, and won, and am preparing for another one if needed). Some pharmaceutical companies also have patient assistance programs you can apply for to cover or reduce the costs of your medications. The trick is to not give up.

Who Has the Resources to Advocate for Themselves?

All of this is exhausting and, let's face it, terrifying. One day last week I finally broke down sobbing on the phone to insurance reps. What terrified me most was being yet again in the position where I have to choose whether to pay a lot of money for needed treatment that's already proven to work for me—or to go without.

Early in my journey with chronic illness, I literally couldn't afford to fill medications. So I didn't. And my condition got worse because the cheaper meds that were often used to treat episodic migraines actually worsen chronic migraines long-term. Eventually my condition deteriorated to the point that I had to pay for care or I wouldn't be able to hold down a job. I racked up $10,000 in medical debt on my credit cards. But my condition stabilized.

All of this only reinforces how unequal access to healthcare is.

I'm a white, middle-class, English-speaking woman with a knack for paperwork. I can call insurance companies and go to doctor appointments during the workday. Even so, it takes days out of my life every year to fight to get treatments covered.

It's awful and scary when an insurance company denies care that all your doctors agree you need.

I don't have a call to action or a tidy wrap-up for this post. Except to say, if anyone needs help navigating your health insurance company, I'm happy to assist however I can.


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