Opinion - My $100,000 in annual injections

I started showing symptoms when I was a child — stiff, swollen, painful joints coupled with fatigue and patches of psoriasis. Years of misdiagnoses meant that I was 13 before doctors determined I was actually suffering from an autoimmune disorder called psoriatic arthritis. At the time, I couldn't have imagined how much that diagnosis would change my life — or the lives of everyone in my immediate family. Since my diagnosis, three of my four siblings have also been diagnosed with the condition.

The disease has wreaked havoc on my 29-year-old body. In a few weeks, I will be undergoing a hip arthroplasty to help correct the damage from years of inflammation. I spent my mid-20s using a cane until I could no longer deal with the embarrassment. I replaced the cane with pain pills, making me more mobile but less lucid. And while that sounds like a recipe for a good time, I am usually too busy sleeping to be social.

I decided in early 2009 to publish a blog describing my uphill experiences navigating the medical system in America. It was fun for a bit, but I tired of my own constant complaining about the health care battle being waged in Congress. And I was disappointed in the final version of the Affordable Health Care for America Act. So I stopped writing. But the midterm elections, and the subsequent ego boost for the Republican Party, has provided fuel for the anti-Obamacare crowd. And this, in turn, has fueled me.

Ultimately, my condition can lead to permanent fusion of the vertebrae, or what is adorably referred to as "bamboo spine." To prevent bamboo spine, I take a number of medications and receive a variety of treatments. For the sake of brevity, I will give the highlights. My main drug cocktail consists of a monthly intravenous biologic drug, weekly chemotherapy, and daily steroids, anti-inflammatories and pain meds. My routine medical visits plus prescription drugs cost a small fortune in co-pays, but the most staggering number is the price tag for the biologic drug alone: Each monthly session runs more than $12,000, totaling well over $100,000 a year. I am fortunate enough to be insured on my husband's plan, which covers the bulk, but not all, of these costs. As you can imagine, even a fraction of $100,000 is more than most people — myself included — can handle.

Having spent my entire life intimately involved with the medical system in America, it is perhaps unsurprising that I support universal health care. I cannot begin to comprehend the amount of money my parents have paid to hospitals, insurance companies, and pharmaceutical giants to keep me and my brothers mobile. Having four of five children with a chronic illness has had a devastating effect on their financial stability. Luckily for them, I am no longer a dependent, but they still have my brothers to care for. And while universal health care would relieve the financial burden on my family, I must come to terms with the fact that, at the rate we're going, it likely will never happen in America.

I'm incredibly disappointed about this, but I still appreciate what the health care bill has done for my family. Our pre-existing conditions can no longer be used to deny us medical coverage. This is an important first step. Another bonus — my sister, who has been without insurance for a number of years, is now able to rejoin my parents' plan, as she is not yet 26. Which is perfect because she hasn't been tested for the gene yet, and we are really hoping to welcome her into the club.

Here in Georgia, our elected representatives have vowed to fight Obamacare. While the state insurance commissioner-elect has famously lamented that he "can't do squat" in terms of opting out of Obamacare, he can make it more difficult for Georgians, particularly those of us labeled "high risk," to benefit from the health care bill — and he has promised to do so. This would have a profound effect not just on my family, but on the families of the 9,200 children in Georgia living with arthritic conditions similar to mine.

Everyone in this country deserves equal access to quality health care, not just those of us who are high risk. But for myself and others in the high-risk pool, our lives depend on reform. We can't wait.