Health care reform (a cancer survivor’s perspective)

There is justifiably two sides to every story, but here are my thoughts on health care reform as a cancer survivor.

I try to maintain a balanced opinion when it comes to political issues and see all perspectives and sides. But I find myself struggling when Congress doesn't vote to support access to health care, especially amongst the most vulnerable, the patients. I struggle when patient protections that were included in prior health care bills are on the chopping block.

Learning the health care system

Health care 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 medical tests, like colonoscopy
• Minimums and maximum payments
• Deductibles, co-pays and co-insurance
• HSAs and FLEX spending accounts
• And of course, pre-existing conditions and lifetime limits for maximum coverage

This was all a part of my vocabulary by the time I turned 20 years old. And that is why I jumped for joy when the Affordable Care Act passed and removed several heavy weights off of patient, especially the pre-existing condition and lifetime limits clauses.

Pre-existing conditions before health care reform

I vividly 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.

Not having insurance might as well have been the same thing as a death sentence for me, 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.

And that meant our single-income, teacher-salaried, newlywed budget would have had to afford thousand-dollar procedures in addition to the ramen and mac and cheese we were eating.

My own group health insurance

Even after I got my own health insurance coverage through a group plan, I faced another hassle. The organization I worked for underwent operational changes and our health care coverage was dropped.

It happened to occur a week before colon resection surgery. The scramble became less about my upcoming procedure (which found my second colon cancer at age 25) and more about:

• how and if I would be covered
• how to avoid a lapse of care
• 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.

Positive impact of healthcare reform

When health care reform was introduced and enacted, it was like someone peered into the private hospital and living rooms of us patients - those of us agonizing over insurance booklets and bills - and said “this is not right!”

Health care reform meant insurance companies couldn't dictate our lives anymore as patients, or at least as much. We could actually breathe because we had more legal protections. Health care reform meant our elected officials were standing up for us patients: They refused to watch us go lower than our illnesses had already made us go.

Patients dream again

It meant we could dream again, not be bound in jobs we hated because we had other ways to get health coverage. It meant we didn't need to fear if we went a day without coverage, removing pre-existing condition clauses allowed us to be covered ASAP. It meant we didn't need to fear when the recurrence or follow-up survivorship care plans were dealt. If we had insurance, it would cover it.

The changes put into place made us feel like we mattered, someone cared.

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

Not perfect

Was the health care reform law 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 a shared value. And that's what grieves me so deeply when lawmakers don't support patient protections put into place by health care reform.

It shows there's not a shared value of protecting patients at all costs: the sick, weak and weary (those who need our help the most). It's about profits and protecting those who are well.

Listen to patients when making reform

It's scary and sad when voices of the healthy make decisions for the sick. My hope is that as changes to health care 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 hits so close to home. While staying neutral and bi-partisan is more in my comfort zone, when it comes to protecting patients with our laws, I can't help but speak out, regardless of which side of the aisle it benefits.