A Laugh-Out-Loud Author Takes on a Deadly Serious Topic: Fighting for Health Insurance Coverage

Sometimes I think you want me dead … And I am here to live. And it seems those things are sometimes mutually exclusive. — Jenny Lawson, from ‘Broken (In the Best Possible Way)’

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portrait of Jenny Lawson and her book Broken in the best possible way
Author Jenny Lawson writes about dealing with rheumatoid arthritis, depression, and anxiety — and the struggle to get treatments covered.Photo by Laura Mayes

Many know Jenny Lawson as the hilarious author of Let’s Pretend This Never Happened and Furiously Happy. The latter’s subtitle is A Funny Book About Horrible Things, which sums up Lawson's oeuvre in a nutshell — she has an outsider’s take on the weird and wonderful. (Just ask Beyoncé the Giant Metal Chicken.) In her new book, Broken (In the Best Possible Way)), she takes her readers on her journey with debilitating rheumatoid arthritis, depression, and anxiety, and goes down the enraging path of trying to get proper healthcare coverage for prescription medications.

Everyday Health spoke with Lawson about this crisis in healthcare coverage.

EH: You’ve written a lot about your struggles to get covered by your health insurance. What toll did that take on you emotionally and physically??

JL: It’s so hard to fight for your care when you are sick. It can be even harder when you’re dealing with mental illness, because you are exhausted from the lies that depression is telling you: that it’s all in your head, that it will never get better, that you’re not worth the time and effort and money it will take to get treatment. When your insurance company tells you that they don’t think you should have the treatment either, it’s so easy to give up, because you’ve been hearing those same lies for so long from your own mind.

EH: What are some of the things that have happened? Did the insurance company deny you were even covered by them?

JL: Occasionally my pharmacy or doctors would follow up with me to tell me they were showing I wasn’t covered at all. I’d show them my insurance cards and they’d call and be told it was just a mistake, but it happened so often I sometimes wondered if it wasn’t a tactic to get people to give up without even trying. There’s something particularly cruel about the fact that when you are at your weakest and most vulnerable, you have to be able to fight a battle that seems like it will never stop. It’s incredibly shortsighted of the insurance companies, because if we don’t get basic and preventive treatment, we’re more likely to get worse even sooner.

EH: In the early 2000s, policy advocates fought to abolish?“fail first” or “step therapy,”?a non-evidence-based rule that requires a patient to try certain approved drugs before getting coverage for the doctor-preferred drug. Have things gotten better in terms of coverage?

JL:?The worst problems I’ve had have been in the last five years. A new RA doctor prescribed Simponi injections once a month, which made a giant difference. I still have bad days and the side effects aren’t great, but it’s a miracle compared to the pain I was in. My new insurance company wouldn’t cover it, though, because Humira is cheaper. My doctor didn’t want me to switch to Humira because you have to take twice as many injections; and, for me, the injection stings a little more. My insurance said it wouldn’t cover Simponi unless I first failed Humira. That is the worst, because recovering from RA is so awful and takes so long, and it meant giving up the one medication that had saved me. But Simponi without insurance is about $5,000 an injection and I’d have to pay for it myself. I’ve been on Humira, though, since last year and it seems to be working. It doesn’t last as long and doesn’t feel quite as effective, and I have more problems with the injections, but it’s working. I’d much rather be on Simponi, but I’m just grateful that I’m not in pain.

RELATED: The Best Ways to Reduce Stress When You Have Rheumatoid Arthritis

EH: Did you have the same issues trying to get your antidepressants covered?

JL: Trying to get them to cover the brand name of my antidepressants (I had adverse reactions to the generic) is such a battle. I switched to a new insurance company last year and it started all over again. I’ve been paying out of pocket (hundreds of dollars a month) for my antidepressants while going through so many appeals and phone calls. This month they told me and my doctor that they would approve it. The very next day I got a letter from them saying that they were denying it. I went to get my prescriptions today, not knowing what was going to happen, and it was approved. The bottle still cost me over $180 out of pocket, so I hesitate to say that it's a "win," but at this point, I have to celebrate all of the small victories I can get.

EH: What advice do you have for people who are fighting for coverage from their health insurance company?

JL: The insurance company is often waiting for you to give up. Don’t do it! Fight for the care you deserve for yourself and for everyone else who is also fighting. The endless paperwork and phone calls are exhausting, but keep in mind that you can make it just as hard for them to deny you as they can make it for you to get the care you need. Here's how:

  • Remember that the person you’re talking to on the line has probably gone through the same thing themselves. Ask them what they would do if they were you. Often they’ll switch you to someone who can help or give you some little detail you need to get approved.
  • Write down everything.?This includes the name of every single person you talk to on the insurance lines.?Use this to prove that you have done the required steps over and over.
  • Every phone call is recorded by the health insurance company. If they deny saying something in a previous call, ask them to provide the recordings.
  • There are financial assistance copay programs that the drug manufacturers offer to make it more affordable, especially with very expensive medications. Ask each manufacturer directly.
  • Fight for yourself just as hard as you would fight for someone you love. Find someone who can help you when things get too hard, even if that just means a friend who will encourage you to keep fighting. Sometimes fighting for yourself can feel impossible. It shouldn’t, but it often does. Take a deep breath. Keep trying. Remember that you are worthy of care.

RELATED:?What Is Generalized Anxiety Disorder (GAD)?

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