db-healthcarebillThere is justifiably two sides to every story, position and opinion. That’s hard to admit sometimes. But it’s the truth. Especially in politics.

I try to maintain a balanced opinion when it comes to issues, and see both perspectives. But I find myself struggling deeply this week after the House’s healthcare vote.

I am focusing my self-talk on reminding myself nothing has passed yet; the bill must still pass the Senate. But the simple fact a bill about healthcare didn’t prioritize keeping pre-existing protections in place, or account for them to the level cancer patients (and others with health conditions) need them, has me deeply grieved.

Because this isn’t about politics this week. It’s much more personal than that.

Learning the system

Obviously, healthcare is an issue that hits close to home for me. I became keenly aware of pre-existing conditions as a 17-year-old kid with colon cancer. I’ve lived most of my life not only physically fighting this disease off, but handling the adult-sized concerns that come with it.  Expensive tests. Minimums and maximums. Co-pays, HSAs and FLEX accounts. And of course, pre-existing conditions.

I remember what it was like before pre-existing condition protections were put in place. I remember the stress put on my 25-year-old husband to stay in a job he hated because of the insurance benefits, and because coverage couldn’t lapse for me. That threatened a death sentence, and I’m not talking about if I would have actually gotten sick or not. If I went even a day without coverage, it meant future coverage wasn’t guaranteed, even on a group plan.

Even after I was fortunate enough and got my own coverage through a group plan (something not everyone could do in my position), I faced the hassle again. The organization I worked for underwent operational changes and our healthcare coverage was dropped. It happened to occur a week before surgery. The scramble became less about my upcoming procedure (which, by chance, found my second cancer) but about how and if I would be covered, how to avoid a lapse of care and how to afford COBRA – the only option for me at the time.

Health insurance stole the show. And that’s how it worked before pre-existing protections were put in place.

My personal life, future dreams and even my physical needs were often overshadowed or put on hold because of a dark cloud of insurance that entered each situation and got to call the shots.

Reform

When healthcare reform was introduced and enacted, it was like someone had peered into the very private hospital rooms and living rooms of those of us pouring over insurance booklets and bills and said, “this is not right!” It’s not OK for insurance to run life decisions like this for anyone, let alone patients.

Lawmakers stood up for us patients and refused to watch us be bound to diseases that had already taken so much. Changes were put in place that allowed anyone to get health coverage, and that let those of us with a history of disease breathe more freely knowing we couldn’t be denied coverage any longer because of what we’d survived in the past.

Survival felt more like an asset and strength, and not a black mark or weakness.

Was the reform perfect? No. Did it have improvements that needed fixed and adjusted? Yes. But all big changes and overhauls bring the need for continual updates. Just ask anyone who’s survived a few years of marriage. It takes communication, comprise and a commitment to protect the shared value. And that’s what has me so deeply grieved.

There’s not a shared value of protecting patients at all costs – the sick, weak and weary – those who need our help the most. The freedom the protections of reform brought feel trampled upon. I am not ready to give it up.

Hoping for a different vote

It’s scary and sad when voices of the healthy make decisions for the sick. My hope is that as changes to healthcare reform continue to be discussed and debated, patients will be kept in mind.

I hope that by sharing my story, I can help shine light on why this issue is hitting so close to home this week. This is why why patients are angry, people are scared, and why whether it passes in the Senate or not, the House vote on healthcare this week mattered.

 

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