The Vicious (Billing) Cycle

A recent Saturday I worked over 14 hours photographing a wedding in Rochester, MN, which is two hours south of the Twin Cities. Being on my feet for that many hours (except for a very quick dinner at the reception) while lugging around heavy camera equipment, and assisting the head photographer with camera gear all day and night was exhausting and painful. I’ve done it before and I usually know what I’m in for and how wrecked my body will be the next few days afterward, but I tell myself that it’s worth it. Why? I like working with my boss (who is also my friend), and, well, the pay is good. And I really need the money.

I went to the bank and deposited the big fat check I got from the Rochester wedding, which was a great feeling–for about 15 minutes before I started paying bills. A hundred dollars to this medical bill, $50 to that doctor, $100 for this clinic bill, and so on. The medical bills are never-ending. How depressing is it that all of the physically grueling photography work I did that day (and all of the other jobs) was to pay for my healthcare costs? Even with insurance, for years now I feel like I’ve been drowning in medical debt, barely able to keep my head above water.

Luckily I do have health insurance, but it’s coinsurance, and on top of the expensive monthly premium payments, I also have to reach a $500 deductible and then $3,000 out-of-pocket maximum before medical costs are covered at 100%. Until the deductible and $3,000 are reached, my plan covers 75% of the total cost of everything (office visits, prescriptions, X-rays, lab work, etc.) and I’m responsible for the remaining 25%. It could be worse, I know, but those costs add up very quickly–especially when you’re going to the doctor all the time for RA and other health issues (that are often connected to RA in some way). The Affordable Care Act/”Obamacare” has recently cut my premiums by nearly half, which is wonderful and helps a lot. But despite that, I’m still in loads of debt and honestly can’t afford most of my health care costs each year.

Ever since I was diagnosed with RA 17 years ago, managing my health, and specifically the RA, has been my top priority. I don’t skip doctor appointments. I get my prescriptions filled. I try to ignore the insanely high cost of my Remicade treatments (and other biologic drugs in the past) and get my infusions on a regular basis. There have been a few times when I’ve had to schedule things around insurance issues and that I have put off getting proper care, but for the most part I just bite the bullet and pull out my poor old credit card and deal with the anxiety and stress of constantly being in debt.

A reporter from Bloomberg News recently interviewed me for a story he was writing about patients having problems with health insurance: access to prescriptions, access to care, insurance costs. He was surprised and a bit dumbfounded when I told him that I know of people with RA and other auto-immune diseases who have gone without medications and treatment because they simply couldn’t afford it. They sacrificed their health and risked their lives because they didn’t have good, affordable access to care. Maybe if I didn’t have a chronic illness I would be surprised too, but living with RA all of these years, even with health insurance, I’m not surprised at all to hear stories like this. It’s sad, cruel, and just wrong, if you ask me.

So what can I do? Risking my health and going without good health care isn’t an option. I am grateful that there are some assistance programs out there to help with the costs of the biologic drugs, and I’m currently on Remicade’s RemiStart program. In the past I’ve also had financial help from the Health Well Foundation and the Patient Access Network Foundation (PANF). I would be a lot worse off if these programs didn’t exist, but even with their assistance, there is still a huge financial burden that I’m forced to carry to pay for my health care needs. RA is a very expensive disease. It drains your energy, your hope, your happiness, your patience, your time–and your bank account.

I don’t know, maybe I should try to think up some clever money-making scheme like that guy who raised over $55,000 on Kickstarter to make POTATO SALAD. Asking people for money isn’t really my thing though. More than anything I want to be independent and able to pay for my health care without having to sacrifice the other areas of my life. Is that too much to ask?

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