The AHCA and Christian principles

Last week the Congressional Budget Office (CBO) released its assessment of the American Health Care Act (AHCA), and it wasn’t good. Not for anyone who ever has needed or ever will need healthcare, at least. The effects this proposal would have are truly horrifying to me, and it defies all my efforts to understand how anyone could support such a piece of legislation. So, if you believe that the AHCA is good for America, please, I welcome your comments and feedback. I earnestly would love to engage this topic in a respectful discussion and gain some understanding about the reasons people support it. Because when I look at the effects it will likely have I see only a multitude of reasons to oppose this bill.

An estimated 23 million people will become uninsured if the AHCA gets implemented. More insidiously, many people who think they have health insurance could find that their insurance doesn’t actually cover anything meaningful or expensive, as the AHCA would allow states to choose to lighten regulations requiring insurance policies to cover essential benefits. Similarly, states could also choose to allow insurance providers to charge more—often exorbitant amounts—to people with pre-existing conditions. You know, people like me who have required medical treatment in the past and as such are likely to need more in the future. I think what breaks my heart the most though are the cuts to Medicaid that will result in an estimated 14 million more uninsured people through reduced enrollment. That’s 14 million of the most financially vulnerable people in this country who will be without health insurance as a result of the AHCA. That’s 14 million people who might be just like me, with major health issues preventing them from working, forcing them to rely on Medicaid, the last healthcare-related safety net our government offers. Finally, adding insult to injury—on top of the wide range of regulatory and funding cuts that will negatively impact all but the healthy and wealthy in this country—the AHCA includes tax cuts that will disproportionately benefit the wealthy.

The blatant prioritization of money over human lives represented by the AHCA sickens me to my core. First, as an American citizen, I find the AHCA repugnant. A government should protect its own citizens, especially its citizens whose health or finances make them vulnerable. Second, as a Christian I find the AHCA morally reprehensible. Christ calls us to care for the “least of these,” like the poor, the sick, and the marginalized. The AHCA by contrast harms people who happen to have health issues, face poverty, or both. Now, I believe a Government that provides freedom of religion shouldn’t govern by the principles of any one religion, so it should be somewhat irrelevant that the AHCA stands contrary to Christian principles. But it isn’t.

Most of the legislators who sponsored and voted for the AHCA profess to be Christians, and many of them even cited their ideas of Christian principles as reasons to support this bill. Dangerous theology like an unhealthy emphasis on personal responsibility—a cheap euphemism for selfishness and ignoring our shared responsibility to care for the marginalized—contributed a great deal to the passing of the AHCA. So did the appalling idea that people who, in the words of Representative Mo Brooks, “lead good lives” don’t get health issues. I wrote an entire blog post about “leading good lives” here, so I won’t cover that any more now, but it’s important to address the role Christianity has played in the passing of what, by my assessment, is a very unchristian bill. To see Christianity so entwined with a bill that will harm so many tarnishes the very name of Christ. And for that reason, more than any other, the AHCA outrages me.

Refocusing, and a New Post Tomorrow

Now that I’ll be posting weekly here as well as every other week on Patreon, it’s time to organize my writing a little more. So, I’ll be using this blog to focus on my thoughts pertaining to cancer, Christianity, healthcare, and their intersection. Any posts about other subjects, like Christianity as it pertains to issues aside from health and cancer, will get posted on my Patreon page. I’ll have a new blog post up here tomorrow, so be sure to look for that, but in the meanwhile you can find a post I wrote today about Memorial Day which you can find here: https://www.patreon.com/posts/memorial-day-11442595

A Way to Support my Writing

            After about a month of deliberation I at last decided to launch a Patreon page for myself. In short, it provides an easy way for anyone who enjoys my writing to support it financially in return for access to more of my writing. Should you choose to become one of my patrons, you will get exclusive access to weekly single-paragraph blog posts, a monthly full-length blog post, as well as regular updates on my writing projects and ongoing cancer treatment. If this sounds interesting you can find my Patreon page here: https://www.patreon.com/MorganBolt. There’s also a link on the right side of this page; just click on “support my writing.” If this doesn’t sound particularly interesting to you, don’t worry. I’ll still post here regularly and this blog will always be available for your reading enjoyment. Please, do not feel pressured into becoming one of my patrons or feel obligated to do so even if you don’t much care for my writing. I just want to make everyone aware that you have the option of finding more of my writing in another place. Thank you!

Ascites, Eating, and Major Manuscript Changes

            Well, my estimate from last week was a little off. Thursday’s paracentesis procedure yielded 2.5 liters of fluid, a sizable step up from the “just under one liter” I had predicted earlier. The important point though is it’s gone, and hopefully won’t come back. Hopefully. So far I feel alright; any fluid that is accumulating hasn’t reached the point where it makes me extremely uncomfortable. I’ll take it. On the whole I’m doing alright. I still struggle to catch my breath, but I’m eating more and more normally and getting a little stronger, I think. It's a strange thing that simply being able to eat a semi-reasonable amount of food again is such a source of happiness, but such is life! It’s slow progress, but at least it’s progress. I can lie down flat with my legs straight, I can eat enough to not lose weight, and I’m able to do more and more every day now.

            After too-long of a break I’m diving back into my writing projects again, now that I finally feel up to it. Chief among my works in progress is a book on faith and cancer, and currently my main goal is is to reorganize a good chunk of the draft I have. The most helpful part of taking a month or two off from writing a book is the fresh perspective you gain on it. I realize now that a couple chapters are a bit redundant, while I omitted a few topics I decided I want to explore. As such there’s a good amount of copying, pasting, deleting, and rewriting to do even before I get to adding the new content I have yet to write. It’s certainly not the easiest book to write, but I’m quite excited about what it is becoming. Part a retelling of my entire cancer treatment and part an exploration through the lens of cancer of timely and significant theological issues, it’ll be—in my biased opinion—a captivating, thought-provoking read. But I’ll let you judge that for yourself, someday…

Quick Update

Since my last surgery over a month ago I’ve been dealing on and off with a fluid buildup in the left side of my abdomen. I’ve had it drained a few times but it keeps coming back. This past week we tried aggressive oral hydration (3-4 liters per day) and absolutely no IV fluids to see if that makes a difference, since there seemed to be a correlation between getting IV hydration and the fluid building up. So far it appears to be working. I haven’t grown any more uncomfortable or distended, so as far as I can tell there isn’t a significant increase in fluid, and it’s been a week now. So, this Thursday I’ll head back to Sloan Kettering and they’ll drain it yet again, this time under general anesthetic, which will doubtless be a bit nicer than just a local numbing agent. If you’re really curious, you can look up “paracentesis of loculated ascites” to get an idea of what draining this fluid involves, but the basic idea is pretty simple; stick a needle into my belly and drain it all out. Once the fluid is out—I estimate there’s just under one liter to be drained—I’ll be a lot more comfortable, and hopefully by continuing to drink like a camel and not get any IV fluids it won’t come back this time. We’ll see!

The Specter of the AHCA

Since I was diagnosed with Desmoplastic Small Round Cell Tumors in 2014 I have endured more rounds of chemotherapy than I can count, multiple stints of radiation treatment, over a dozen surgical procedures, and even an experimental clinical trial. Yet none of that filled me with as much dread or despair as the American Health Care Act that passed the House of Representatives last week.

Previously I have only needed to focus on dealing with whatever phase of treatment I was in, whether it was the constant battle to eat enough during chemotherapy, the physical struggles of recovering from major surgeries, or even finding that difficult balance between fighting to stay alive and taking time to really live. Now overshadowing all of that is the specter that soon my health issues might make it impossible for me to receive the healthcare my life depends upon.

Thanks to the random glitch that caused my extremely rare cancer I now have multiple pre-existing health conditions. These already add enough difficulty to my life without the added threat of making the care I need financially unattainable. The malevolent disregard for those of us with pre-existing conditions embodied in the American Health Care Act is an insult to those of us who simply are not profitable to insure and most need healthcare to have a fighting chance at just staying alive.

Last Thursday as I lay in a hospital bed following a procedure to deal with ongoing complications from my most recent surgery I was not worried about the fresh hole punched through my belly or why my abdomen continues to fill with fluid. Instead I watched on TV as group of smug-looking lawmakers celebrated prematurely that my health issues could soon leave me without affordable coverage options. And that was a worse feeling than any I’ve experienced in my two-and-a-half years of intense, ongoing cancer treatment.

In Response to Representative Mo Brooks

If the name ‘Mo Brooks’ doesn’t make you cringe, then start by watching this interview here: Let’s review that appallingly unempathetic barrage, shall we? He states that “those people who lead good lives, they’re healthy” and further claims that those without pre-existing conditions have “done the things to keep their bodies healthy.” While I am glad Representative Brooks has never encountered significant health issues and as such has been able to remain so woefully ignorant of how human health actually works, this level of idiocy should have no place among the people shaping healthcare policy. People shouldn’t have to personally get cancer to realize that people just get sick sometimes, but alas, it seems this is the state of things right now. If it isn’t obvious, there are a couple problems with Representative Brooks’ statements.

First, one’s health has nothing to do with whether one has “led a good life” or not. Health and sickness are not handed out according to some moral point-keeping system. Sometimes illnesses just happen. Medically and scientifically this is simply a fact. My cancer has no known risk factors. It’s just a random glitch in DNA transcription. In fact, the only thing I’ve done in my life to be at a greater-than-normal risk for cancer is receive cancer treatment. That doesn’t mean that, should I develop a secondary cancer down the road, I didn’t “lead a good life” or “do the things to keep my body healthy.” Maybe you think I AM morally responsible for my cancer though. I was diagnosed at 23 after all, and certainly didn’t live a morally perfect life those 23 years. So what about the babies and children I know at my hospital in New York City? These kids got cancer at young ages. Some were even born with cancer. Can you really blame them? Their parents?

I’ve seen too many people who do. People who ignore what we know medically point to Bible verses taken out-of-context to justify such appalling notions. But they ignore the teachings of Jesus, who specifically countered such ideas multiple times. I’ve written before about Matthew 5:45, in which Jesus explains that sun and rain come to the just and unjust alike. In short, it means that the systems of this world do not consider the morals of the people they affect; they simply operate as God created them to. John 9 provides another, even clearer rebuttal of the destructive thinking that blames the ill for their illnesses. This passage tells of Jesus and his disciples encountering a man who was blind from birth. The disciples ask “who sinned, this man or his parents, that he was born blind?” Jesus refutes their thinking, answering “it was not that this man sinned, or his parents.” There is simply no justifying a belief that people are morally responsible for their own health issues. Not from a Christian perspective, at least.

Now, I’ll concede that our life choices can influence our health, to an extent. Sometimes lifestyle choices can contribute to some health issues, though certainly not everyone who drinks heavily is equally likely to develop liver problems, not everyone who smokes is equally likely to get lung cancer, and not everyone who exercises regularly will avoid having a heart attack. Nevertheless it can be true that our decisions and lifestyles play a role in determining our health, along with a host of other factors outside of our control. But even when someone’s actions have negatively impacted their health, should we really punish people who for one reason or another were unable to make the healthiest choices during their life? Apparently Representative Brooks and others backing this current “healthcare” proposal think so. I disagree.

Another problem with Representative Brooks’ statements is that “pre-existing conditions” are not necessarily the same as “health issues” as we think of them. All kinds of things like pregnancy or having donated a kidney to save another’s life were considered pre-existing conditions before the Affordable Care Act came along. Does Representative Brooks seriously think that women who choose to be mothers or those who give their own kidneys to save the life of another don’t “lead good lives?” Does he realize that these sorts of things will be financially punished under the legislation he supports? I actually hope not, and that he is just sadly ignorant of the legislation he backs. It’s easier to understand that way.

To be fair, Brooks does say later in the interview that many people with pre-existing conditions have them through no fault of their own. But that simply does not reconcile with his earlier statements. Worse, if he does understand that people often are not at fault for their health issues, then he simply does not know or care that the legislation he supports unfairly punishes people who happen to get sick by making the care they need unaffordable. Whatever the case, this latest attempt to gut consumer protections for those who need healthcare the most is at best misguided and at worst a monstrously Darwinian attempt to save those who are fortunate enough to be healthy a few bucks at the expense of the lives of those with health problems. I for one will fight such evil as long as I can.

Ableism and those Terrible CDC Anti-Smoking Advertisements

I didn’t even know what “ableism” was a couple years ago. The first time I encountered the word I initially thought it was pronounced “AY-blee-ism” and had to look it up. But throughout my cancer treatment I’ve encountered it more and more, or at least gotten better at recognizing it. And wow, is it everywhere.

It’s hard to blame anyone too much for this. If you go through life without ever having to consider your health or physical abilities, it’s easy to take those for granted. It’s easy, perhaps almost the default for those without disabilities, to develop dangerous ways of viewing health and physical ability. It seems to take either concerted intentionality or some significant change in health to remedy. But whatever the reason, there’s no denying ableism is an extremely pervasive problem in our society.

One of the most glaring examples of ableism I can think of comes from a deeply disturbing ad series put out by the Centers for Disease Control and Prevention concerning smoking. The general theme of most of them is that you shouldn’t smoke because smoking causes a myriad of health problems. There’s nothing wrong with that message, so far. But the ads often go further than that, deeper into more troubling territory. In one ad, a man on oxygen watches helplessly as his wife struggles with the lawnmower, the obvious implication being that he is no longer a “real man” or “useful,” due to his health. Another implies that if you simply don’t smoke, you’ll be guaranteed good health. If you don't know what I'm talking about, watch the most troubling and blatantly ableist one here. That’s right, he said “it’s hard to serve your country when you’re too weak to put on your uniform.” As someone who has needed help dressing in the last month during the aftermath of some major surgeries, I find this incredibly problematic.

The implication that people can only serve their country—or serve any purpose and be a useful member of society—if they are physically fit and healthy dehumanizes those with health issues and ignores the productivity and useful contributions from the differently abled. Stephen Hawking comes to mind, for one. Worse than that, it attaches value on one’s ability to be productive and serve a function others find useful. I reject such thinking utterly. Human value comes not from people’s abilities or perceived usefulness. Our value is inherent as beings fashioned in the image of God, whatever our particular gifts, talents, and abilities may be.

Yes, I understand the point of this ad campaign. Don’t smoke so you don’t have to deal with difficult health issues. That’s fine. It’s disrespectful towards those of us whose serious health issues have nothing at all to do with lifestyle choices like smoking, it ignores the fact that many people smoke because they’re unable to quit and only started it because of intense societal pressures, and it implies that health issues by definition ruin your life and make you less valuable, but the ad campaign isn’t completely devoid of redeeming qualities. If even one person stays away from smoking because of these ads and as such avoids unnecessary physical suffering down the road, then that’s great. I just think there are better ways to discourage people from smoking than to dehumanize those with health problems.