breast cancer, life, Uncategorized

Cancer Care and Politics

I rarely discuss politics with anyone outside my family and small group of friends because confrontations over politics are silly, my mind is made up on certain things, and frankly, I have better things to argue with people about than their political leanings, no matter how asinine I may find their politics. I’m not going to change their minds, and they aren’t going to change mine.

But, then I got cancer. And, it’s an election year. So, candidates are out there screaming about the things they’ll do.

Like overturn, get rid of, or gut the ACA (aka: obamacare).

As a cancer patient, that terrifies me. The ACA made it where health insurance companies cannot:

  • drop someone for a catastrophic diagnosis (like cancer)
  • refuse coverage due to a pre existing condition (like cancer)
  • enforce lifetime spending caps or lifetime limits on coverage expenditures (cancer care is expensive)
  • implement annual spending limits and refuse to cover treatments due to spending limits (cancer treatments are expensive)
  • deny coverage for clinical trial participation (I’m alive because of 2 drugs approved thanks to clinical trials)

Don’t believe me? Read the American Society of Clinical Ocologists‘ 2016 report on Cancer Care in America, page 26. In fact, I encourage you to read the entirety of the report.

I firmly believe two things: the ACA has saved thousands, if not millions, of lives thanks to access to healthcare, and the ACA saved my life because my health insurance had lifetime maximum and pre existing condition limits. It may have had annual limits. I don’t know. This is the first time, in the sixteen years I’ve had health insurance, where I’ve met my out of pocket deductible for anything other than pregnancy. Consequently, I never paid much attention to the limitations. Up until the end of 2015, I’d been extremely healthy.

From someecards…no infringement intended

My chemo treatments cost a little over $2300 per treatment. I had six treatments. That’s nearly $14,000. I’m still on one treatment drug. It costs about $400 per infusion according to my insurer. By the time I finish that treatment, it will cost a little under $10,000. I don’t know how much radiation is. I haven’t received a bill or EOB for it yet, but I have for the mapping and simulation. (UPDATE: I received my EOB for all radiation treatments. It was for $111,900. Yes, you read that right.) Without my health insurance, the mapping and simulation alone would have cost me a little under $2000. I’m not sure how much my monthly tamoxifen is because I’ve met my out of pocket maximum on prescriptions for this year, which I’ve never, in 16 years of having my own health insurance, done. I’m going to be on tamoxifen or one of its counterparts for a looooooong time, God willing, so I imagine it’ll be in the thousands if I live long enough to hear my doctor say I can stop taking it. The bill for my bilateral mastectomy, reconstruction phase 1, pathology testing, and hospital stay for two days? Nearly $80,000. I don’t know what my health insurance company’s cancer coverage was like before the ACA. I didn’t have cancer pre-ACA. I don’t know what the company practices were like. I just know I’m expensive, yet lucky because the ACA has provisions to ensure I don’t lose my insurance and my treatments are covered.

I firmly agree health insurance is expensive. Health care costs are insane. I also firmly believe access to health care is a right. Everyone should have access. Is the ACA perfect? Of course not! But, it’s a start.

And, as someone with cancer who hopes to be a cancer survivor, I’m terrified what will happen if the ACA goes away. Will I lose my insurance? Will I lose my protections? Maybe. And the thought is enough to terrify me. You want the ACA gone? What will replace it? The hope companies do the right thing? Please. Congress had to pass a law so companies would cover reconstruction after mastectomies. Seriously. It’s the Women’s Health and Cancer Rights Act of 1998 (WHCRA).

More than 11 million signed up for health insurance through the marketplaces in 2016. How do I know that? A quick Google search. I know the ACA is not perfect, but I also know without some sort of protection, millions of people, are in danger of losing health coverage, and for someone like me, who has a catastrophic illness, if no protections existed, I could be at risk, too.

Honestly? I never thought too much about all this before my diagnosis. Now, I think about it a lot. When I see friends on FB posting about politics, about the ACA, I wonder…do they think about what people like me might lose? I pay a lot for health insurance. I’ve paid a lot for health insurance during the sixteen years I’ve worked full time since I graduated from college. I’ve paid hoping I never needed it, and until this year, I rarely needed my insurance. Now, I do. I deserve protections from being dropped, from procedures not being covered, from my lifesaving medications being covered. I didn’t ask for breast cancer. No one asks to get sick. No one wants cancer. But, we all want to have doctors and treatment options helping us survive and maybe beat this monster if we’re ever so lucky to hear those terrible words “You have cancer.” I never thought I’d be on this roller coaster, yet, here I am. How many others out there think like I did? That’ll never be me…there’s no family history. I’m too young.

Therefore but by the grace of God go you if you think that way because I thought that way, too. I saw women with breast cancer and smugly thought, “That won’t be me.” Oh, sweet summer child…if I only knew then when I was smug what I know now.

If this ever happens to you or someone you love, worrying your health insurance will drop you or your needs won’t be covered is the last worry anyone should have. The ACA gave us protections from companies that exist to make money.

I’m not looking for a political debate or to start a firestorm. I know I’m lucky to have insurance that’s covered everything they’ve covered and been compassionate every time I’ve had to deal with them. They’ve only balked at one test, and even it was covered after a twenty minute phone call from an insurance specialist at the imaging center. I wonder, though, what will happen if the protection I related at the beginning go away.

And, that’s enough to scare me. Deeply. Hence, I will not vote for a candidate who screams about repealing the ACA.


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