It's Personal

I've been debating for the last 24 hours about whether or not to post something about the Supreme Court's ruling about the Affordable Care Act. There are things I try to avoid talking about on Lympho Bob. Politics is one of them. Death is another.  So that makes this topic pretty much the definition of something I should avoid.

But it seems like everyone has an opinion on it, and a bunch of people expressed theirs to me yesterday. I mostly tried to stay measured with my comments, though a couple of times, I did get a little more...personal.

And, to me, this whole issue is personal.

I can't help thinking of a young girl I knew from my support group. She lived in California, 19 years old, a college freshman. Her parents were immigrants, with good jobs. She was studying to be an engineer, like her father. But when she contracted Diffuse Large B Cell Lymphoma, she was dropped from her parents' insurance. She had a course of chemotherapy, and it didn't work. Eventually, she needed a bone marrow transplant.

For about two months, we in the support group got almost daily updates from her. They searched for a donor match. They found a donor. Her numbers got worse. They stabilized a little. Then they got worse again. Then there was a delay. Her parents couldn't afford the $100,000 for the transplant. Her friends -- people her age, who she had just met a couple of months before, when they all started college together -- started fundraisers for her. Nothing major -- car washes, things like that. They were kids, what else could they do? They wanted to do something. The rest of us in the group certainly knew that feeling.

And we kept getting the daily updates. About her health, about the fundraisers, about how she was moving toward her $100,000 goal. And then one day, the updates stopped. We went three or four days without one. And someone asked, cautiously, "Anyone heard anything from her?" And maybe some people knew, or suspected, but I was so caught up in the hope and optimism that she was putting out that I thought maybe she was just too busy with the fundraising. But, of course, after four days of not hearing, there was no good news. Someone posted a link to her CaringBridge blog, with an announcement from her family. And there was a link to her obituary, too.

It hit me so hard. I wanted so much to believe that she was going to be OK. She was the first member of the support group who had died since I'd joined. She certainly wasn't the last. And, unfortunately, she wasn't the last to die because she lost her insurance when she got sick.

So, to me, this is personal. I just don't understand how we can allow things like that to happen. I do truly believe that we live in the greatest country on earth. (I've visited seven others, so I feel like I have at least something to compare to.) But for all our greatness, we let people die when help is available. Bad enough that they die because they can't afford the help. But so much worse, so much more unnecessary, when they did the right thing, got health insurance, were not a "burden" to anyone, and we let them die anyway?

So it's personal. What it is not is political. The individual mandate was first proposed in 1989 by the Heritage Foundation and included in bills by Republicans in 1994. So the idea itself is not liberal or conservative, Republican or Democratic. Why make it so?

I'm not naive enough to believe it can be de-politicized. It's a law, and even in the best, happiest, most cooperative of Congresses, anything can and will become political. But it hurts to think about the 19 year old girl from California, and to think about who else will be a victim of the politics. (And if you've read Lympho Bob for a long time, you know how I feel about the word "victim"....).

Looking at the cancer-related groups I belong to online, I see a lot of resistance and agonizing about the decision. It surprises me. I would think cancer patients would be in favor of provisions that would take away the worry of losing their insurance, or of reaching a maximum benefit. They have their reasons. Some seem legitimate (they may have fewer choices of care), and some seem less so, to me, anyway.  Maybe the individual mandate is not the best way to make this all work. If that's the case, if it's broken, then fine -- let's fix it.

But don't take it away, or wish it away -- not all of it. Many, many people -- cancer patients, especially -- have been given a gift. It would be so wrong to take it back.