“Access” Means Nothing If It’s Not Affordable

Warning: This post is about healthcare; it is political; it is personal; I am angry; there may be cursing.

Once again, I am compelled to write not about fitness, but about healthcare (because, of course, to anyone who has ever had cancer, or had a loved one with cancer, healthcare is always a top priority). On Thursday, the House GOP passed their most horrendous version of their healthcare repeal bill; it now goes to the senate. They will claim that they’ve preserved coverage for those with pre-existing conditions (like me). Technically true – insurers would not be allowed to drop people – it does allow states to get out of rules that protect us, so it will totally depend on where you live.

What it does do is allow insurers to raise premiums for anyone who gets sick or has some other type of pre-existing condition. And the list of pre-existing conditions is LONG. It includes acne. It includes addiction. It includes pregnancy. HIV/AIDS. Dementia. Migraines. Sleep apnea. Tooth disease….On Twitter, Senator Sherrod Brown tweeted out the entire list. So, for all of these conditions, insurers would be allowed to raise your premiums – a sick surcharge.

For example: people with metastatic cancer (super important to me since about a third of all breast cancers return and become metastatic at some point) will pay an extra $142,000, give or take a few thousand. Lung cancer, $72,000. Arthritis, $26,000. Got an autistic kid? You get to pay about $5,500 extra every year of his life. Their solution is to create state “high-risk” pools for all of us who will not be able to afford these surcharges. Estimates are that insurance in these pools will far exceed $25,000 per person. (all figures from Kaiser Family Fund, AARP, reported by Time, NY Times)

~I’ll add a short reminder of my experience before ACA. After I was diagnosed with breast cancer, my insurance company (Aetna) couldn’t dump me because I’m in NY, where that was not legal. Instead, they began raising my premiums. Within a few years my premiums had more than tripled. Because of my illness, I was working less (although I worked as much as I could all through treatment). My insurance premiums ended up being more than my income. Without a partner who could cover more of our joint living expenses, I would have had to choose between being homeless (and I may be strong, but I know I don’t have the fortitude for homelessness), going without treatment and waiting to die, or perhaps moving back in with my parents, unemployed, out of money, in my 40s.

Of course, this completely ignores a whole group of people – very many of whom are greatly in favor of this bill, and a lot of those who wrote this bill – who have not been diagnosed yet, but who are deeply unhealthy. Lazy people who never exercise, people who smoke, eat junk every day, fat, sit on their asses drinking wine every night…one could argue that those people should be charged a surcharge, because from their lifestyles, they are at a high risk of disease. Or how about genetic pre-disposition. For instance, because I was diagnosed with breast cancer at a young age, my nieces and nephew are all at high risk for breast cancer. What’s to stop insurance companies from slapping a surcharge on them? But no, for now, lazy slobs and people with bad genes are safe. It’s not those of you who are pre-diagnosis, just us post-diagnosis who will suffer.

Technically, we’ll still have access to health insurance. But how many of us can afford an extra $100,000 (just in premiums) when we have cancer? Access means nothing if you can’t afford it! 

Other aspects of the bill are equally troubling. If states choose to opt out of current rules, insurers will no longer have to cover things like emergency services. So, you’re having a heart attack, or your kid falls off the jungle gym, your ER visit and all associated expenses will not be covered. Routine wellness exams and cancer screenings may not be covered. So, when you are diagnosed with cancer, it’s more likely to be found at a later stage – maybe even when it’s metastatic so you’ll be charged and extra $142,000. Mental health (including addiction treatment) will not be covered on par with other health. So, all of you worried about the opioid crisis, now the only people who will get addiction treatment are the super wealthy. Funding for rural doctors and hospitals will be slashed. And weirdly, this bill will also cut funding for special education.

But what’s equally (maybe more) disturbing, is the attitude about all of us with pre-existing conditions. I’ve been noticing this for a while. From politicians, from commentators, in conversation, we – the sick and disabled – are other. We are the problem, not the insurance industry. Rep. Mo Brooks basically said that we – people who have been sick – are to blame, that people who lead “good lives” are healthy. Rep. Robert Pittenger says we should all just move someplace else. He doesn’t say where. Joe Walsh, who is a famous Deadbeat Dad, at one point owing over $117,000 in child support, made rude and heartless statements in response to Jimmy Kimmell’s healthcare plea with the story of his newborn son’s emergency heart surgery. And who can forget – going back a couple years – Alan Grayson’s advice to people who get sick: “Die quickly.” Incidents of harassment and threats against the disabled are rampant in the past few months. I and a lot of other healthcare and cancer advocates have been threatened on social media. We – I – have been told we should just die and leave society to the healthy.

What should we take from all of this? That we’re too much of a burden on society? That we “deserve” to be rounded up? That we are no longer useful to society because we got sick?

I’ve also heard a lot about how “hard-working” people shouldn’t have to pay for us. Well, first of all, we do pay, we have been paying into the system for year, that’s what insurance is. Insurance spreads the cost of catastrophic expenses over a large pool. That also ignores that most of “those” people who are perceived as being lazy moochers are actually disabled, or partly disabled. But having healthcare means that many of those people can still contribute to society if their conditions are maintained. People with Parkinson’s or MS are able to continue working and functioning longer when they are receiving proper treatment, for instance.

But this idea of who is working hard is decidedly skewed. It seems that right now the only people who are considered “hard-working” are men (mostly) who do physical labor. I don’t dispute that they work hard. But they are not the only ones who work hard.

I’m a musician. I work hard. I’ve worked hard my whole life. For decades, I missed holidays with family because I had to work, to entertain the rest of you on your days off. For much of my adult life, I rarely took vacations – always had to practice or work. Growing up, I spent countless hours practicing instead of going out with friends – no spring breaks vacays in college, no movie nights with friends when I had an audition coming up. As a fitness expert, I spend endless hours reading and studying to keep up with recent research. But a lot of “hard-working” folks, even people who don’t work, even members of my own family don’t think I deserve affordable – not free – affordable healthcare because I’m not hard-working. Or at least that my work has no value, and so, am not deserving of healthcare like people who work.

I work. I pay my taxes. I’m also pretty sure the woman who cleans up your shit in the toilets at your office or the restaurant your went to for lunch feels like she works hard, too. Or the guys keeping up your lawn (which, BTW, mow your own damn lawn, you lazy jackass). Or the people working three low-wage jobs to try to get by. Or the ones frying your chicken because you’re too lazy to cook your own dinner. Having worked in the corn fields as a teenager, I know that all the people picking your vegetables work hard – they may not be paid much, but they work hard. The doctors and nurses taking care of your aging parents, or you when you get sick, they work hard. The people teaching your stuckup little brats work hard. Pretty much, we’re all working hard. Even the people who are disabled, for whom just getting through the day is a struggle. Even if we don’t wear hardhats and dirty jeans.

Look, I gave you a warning at the top of this post – I’m angry. I am tired of the prejudice – implied and outright – of this healthcare repeal bill, and of the rhetoric around it, from strangers as well as those close. We are not second class citizens because we happened to get sick. We are not bad or immoral people because we happened to get sick. And we are not the cause of all of your problems!

While it may be satisfying to moralize and feel superior, are you really better off if 24 million people in this country can no longer afford healthcare? As you’re riding a crowded bus or flying in a crowded plane, are you better off if the person coughing next to you is not getting treated for their TB? Are your kids better off going to school with children who don’t have access to a doctor to treat their whooping cough? Or impetigo? Is our economy better off with the huge loss of productivity brought on by people too sick to work because they can’t go to the doctor? Or disabled people who will never join the workforce because they didn’t get the tools needed to help them when special ed is cut? Is our housing market stronger when people go into foreclosure because they had a medical emergency (no longer covered by their insurance)? Is our government stronger when the millions of dollars we pay in taxes are no longer collected because we’ve become too sick to work?

Personally, I happen to believe we’re all – as a society – better off if more people are healthier. But I guess that’s just me.

While you’re busy feeling superior, remember, we really aren’t so other. It’s not just us. It’s you. It’s people you know. It’s people you love. And, as I posted earlier this week on FB: Just to be perfectly clear, when you say “these people” don’t deserve healthcare, you are saying that I – Julie Goodale – deserved to die. That I still deserve to die. Fuck you!

Look, I gave you a warning at the top of this post.



This entry was posted in AHCA, GOP, health insurance, healthcare marketplace, metastatic breast cancer, Trumpcare. Bookmark the permalink.

2 Responses to “Access” Means Nothing If It’s Not Affordable

  1. Nancy Stewart says:

    Bravo!!!!!! The realities of this part of the law and how many people will be labeled as having pre-existing conditions isn’t talked about enough. I wrote to the Senator in my state who always votes straight republican and said to him that if he votes for the law as it stands he is signing a death sentence for millions of Americans. I doubt that my letter will sway him, but I will keep on writing to him about the negatives of this law and the impact it would have on so many Americans.

    It seems that the law approved by Congress is designed to kill off anyone who doesn’t fit their idea of healthy and productive. So, I don’t earn 100 million a year. Does that make me less of a person than someone who does? I don’t think so.

    • admin says:

      Thank you, Nancy! Keep writing, calling…thank you. That’s all we can do: keep standing up, keep speaking up, keep lifting each other up.

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