What It’s Like to Be a Cancer Patient on the Obamacare Repeal Rollercoaster

Senate Majority Leader Mitch McConnell announced yesterday that there would be no vote on the last-ditch attempt to repeal the Affordable Care Act, aka Obamacare. That was after three Republicans said they wouldn't support the bill known as Graham-Cassidy. GOP lawmakers were trying to ram this bill through the Senate before September 30th while they still could pass it with just 50 votes instead of the normal 60. This was despite the fact that they wouldn't be able to get an independent analysis of how many people would lose insurance as a result of the bill in time. Essentially, they were asking Senators to consider voting for it without knowing how bad it would be.

But while this bill is dead, Obamacare repeal is still alive: Lawmakers are prepared to hold the budget hostage in order to undo the law. Senator Ron Johnson said he and Senator Lindsey Graham won't vote for a budget resolution that doesn't allow them to use the same 50-vote simple majority to repeal Obamacare in 2018. Senators Ted Cruz and Rand Paul are also open to the changing the rules again for next year, but stopped short of saying they'd vote against a budget to do it.

When announcing that there would be no vote, McConnell himself vowed: "We haven't given up on changing the American health care system. We are not going to be able to do that this week. But it still lies ahead of us, and we haven't given up on that." It's. Still. Not. Dead.

The repeal rollercoaster is exhausting enough for the average person to ride, let alone people who have Obamacare for their health insurance and really, really need their coverage. Just ask Laura Packard, a self-employed consultant who was diagnosed with stage 4 lymphoma in April.

As she told me on Twitter:

I called Laura to learn more and we talked about this psychological toll, as well as asking her friends to marry her, and why she's not exactly thrilled with Bernie Sanders's Medicare for All bill.

How long have you had Obamacare?
I'm self-employed and I've had Obamacare ever since it was a thing that you could have, so since 2014. Before that, I used a website called ehealthinsurance but I knew my policy was only going to be good if I stayed healthy.

I worked for the AFL-CIO in 2009 and 2010 in Arkansas working to get [Obamacare] passed, so I was talking to all kinds of people who got screwed by their insurance. I was well-aware that as an individual with absolutely no clout, if I ever got really sick they would figure out how to cancel my policy. This is an issue that I worked on for years and years policy-wise, it's just I just never thought it was going to be me.

When were you diagnosed with cancer?
At about the beginning of April. My life has changed really dramatically because I felt OK before that. I had a lingering cough. When I went to urgent care back in January they told me it was pneumonia and gave me some antibiotics. I felt better but the cough never entirely went away. Finally, in April I dragged myself back to the doctor and that's when they told me I have stage 4 Hodgkin's Lymphoma. The people in the know say it's the "good" kind for whatever that's worth. It's curable, the goal is for me to be cured.

Which your doctors say you can do if you continue treatment.
Right, I've got two more chemos and then a break of a couple weeks to recover, then radiation.

And you now see a cardiologist, too. What's going on with your heart?
Every time you go to chemo they check your blood pressure, your weight, your heart rate, and in July they said my heart rate was elevated. When I went back a couple weeks later for my next chemo it was still elevated. I got a referral to a cardiologist and had an EKG done that month. When I went back to talk about the results they said I'm halfway between normal and really fucked. So now I get to do fun things like check my ankles every day to make sure they're not swelling—that would be heart failure.

Had your doctors noticed any heart problems before?
I have a benign heart murmur but I don't need to do anything for that and it's not related. I was a pretty healthy person before this, I see my doctor once a year and I haven't been in the hospital since I broke my arm at 13. Some of the chemo drugs I'm on mess with your lungs and your heart, but they wanted me to see a cardiologist.

Do they have any ideas what might be behind this? Is stress involved?
Oh I'm sure it's stress. Some of it's chemotherapy in that chemo is making me more vulnerable to stress but I mean the timing? July is when they really started coming for my insurance. It's got to be related. [Editor's note: The Senate health bill was introduced late June and the Senate and voted on a different version a month later.]

When Senators Susan Collins, Lisa Murkowski, and John McCain voted down the "skinny repeal" bill in July, were you thinking "oh good I'm safe?"
Well I was up watching it because, obviously, and I was shocked that McCain did the right thing. I really thought they were going to take my insurance. I was happy, relieved—I was so excited at 3 in the morning here in Nevada. But I knew that just like in the House, after the first victory...it's like cancer, you think you have it licked but it's somewhere microscopically in your body just waiting for the moment to come back.

I knew that with this crop of Senators and with their determination to give tax cuts to rich people, until September 30th comes and goes, this is not done. Other people were saying "it's done it's no problem, let's talk about Medicare for All!" I'm like "Nooooo, it's not done."

You raised a point in your June US News op-ed that some people apparently still need to hear: you could be a very healthy person until the day you get into a car accident or get diagnosed with some condition. Did you see the comment from Trump economic adviser Stephen Moore that people think it's unfair for the "healthy" have to subsidize the "sick?"

What's sad about that is that this is an advisor to the president of the United States of America on that just displayed, in public, his butt [laughs]. You don't understand how insurance works if you say that. Sure, people whose houses don't burn down don't really want to pay for people whose houses do, but that's how insurance works.

And you could get sick or injured at any moment—that's why you have insurance.
Exactly. I've been a healthy vegetarian my entire life. My BMI is good, I get my 10,000 steps—or at least I used to, pre-cancer—and still, my number was up for whatever reason. My cells went a little crazy and my body didn't stop them. There's no family history of cancer—my grandparents died in their 90s. This is all very new to me, having to change my idea of myself from "healthy" to "sick."

So, Trump blocked you on Twitter but perhaps not about healthcare tweets. In a video you made for NowThis, you told Trump, on behalf of people with preexisting conditions: "it's really important that you hear us, that you see us" and that "our lives have meaning." Why do you think it was important to say that?
This administration seems to believe that some people are better than others. Whether you are sick or healthy is not a judgment call on how good you are as a person. If you came to this country as a child and have live your whole life as an American, well, get out. If you are woman, you better be pretty and be seen and not heard. If you are a person of color, you're probably a criminal thug. These crazy ideas I would say are from the 1950s, but not all people were racist and bad in the 1950s. It really is this prosperity gospel philosophy of this administration that if you are not rich, then you are a lesser person.

Then there's Kellyanne Conway saying if people want to work, they'll get insurance through their jobs; falsely suggesting that every job in America provides health insurance. Some people only work part time or they have several part-time jobs because they can't get a full-time job. Or maybe they want to work for themselves like you do.
Exactly. One of my cancer friends has stage three breast cancer in a state that didn't expand Medicaid. She's a single mother who has two part-time jobs and three small kids. It's just like "oh yeah, she should totally get a better job with health insurance, she'll get right on that."

She's had to do GoFundMes and stuff. I'm very lucky that I have not because I'm a reasonably well-paid person, I don't get [tax] credits on the exchange and I shouldn't—that should be for people who need it. Cancer sucks and medical bills suck and my high deductible sucks, but I can stomach that. I haven't had to do a GoFundMe but so many of my fellow cancer patients do. I am privileged, I recognize that.

May I ask what your deductible is?
Oh sure, I have a bronze plan. It's an HMO plan and I pay less than $300 a month [in premiums], which is what I have paid for a decade now. Then my deductible is $6,000-something. And I have an HSA-compatible plan so I have a health savings account so I already had the deductible covered. I don't like a $6,000 expense, but I can take it. A lot of Americans, maybe even most Americans, can't just pay a $6,000 bill.

And people who can afford to put money in health savings accounts are in a different position to begin with.
Right, I used it as an investment. I maxed [my contribution] every year—and then I got cancer.

How do your costs compare to what you paid before Obamacare?
It actually has been about the same. I've been paying in the $200s a month for years and years. It's just that now I have a policy I can trust and before I did not.

You can't be kicked off it, but if states are left to decide what essential health benefits they'll cover and if they'll charge more for people with preexisting conditions— both of which the Graham-Cassidy bill allowed—your premiums could go way up.
They can make it so that you can't possibly afford it.

And perhaps a state could choose to no longer cover chemotherapy, which would leave people like you in the lurch.
Right and then insurance might just be words on paper.

One of my colleagues lives in a state that didn't expand Medicaid. He's also self-employed and was on the exchange for the first couple years but the prices got so out of control that he ended up going on his wife's insurance, which is not that great, but the cost was better.

He's lucky to have that option. You wrote in your op-ed that you're single and there is no employer-sponsored plan—this is it.
I'll tell you this, I was just talking to another stage 4 cancer friend—cancer friends, they're everywhere!—and we're both extremely frightened about what's going to happen, because we need this to live. And I'm like, "so what's your backup?" We both have friends that we've identified who will get married if…if it's get married or die, we both have our backup marriage plans.

Oh my god. You have great friends, but those are problems that we thought Obamacare solved.
Right. I've kicked around the idea of immigrating to Canada but I think the time it would take to move to a country with the same healthcare system… As a cancer patient, your timeframe is shorter—I can't go a year without care. But I do most of my work in California, and if California has a sane insurance market and Nevada's breaks, then I would have to consider relocating. Since I'm self-employed where I live is up to me.

So here you are working, getting your chemo, and also thinking "hmm, should I move? Which of my friends could I marry?" How is this all affecting you?
It's a pretty big ask, to ask one of your friends, "hey I want to stay alive, can I marry you?" I have great friends, probably a few of them would marry me, and thankfully now that Obergefell has passed, the options are any of my friends, no matter their sex.

You've clearly found the upside there, but this all feels like it would be too much for anyone to deal with.
Right but I mean, it is what it is. If you don't think about this stuff and then you lose your insurance—I mean, people died. People still do die, Obamacare is not a savior that has made our insurance system all better and everyone is taken care of. There are real problems here and I wish that the Senate would work on them, but it's a lot better. There's a backstop.

Let's talk about universal healthcare then. What was it like to see Bernie Sanders's bill introduced at the height of the latest repeal effort?
I believe healthcare is a right not a privilege and I wish our country acted like that. I don't have strong preferences about all the different flavors of Medicare for all, but I feel like now is not the time—let's talk about this after September 30th. I feel that really, really strongly.

I know all the different forces that are pushing against that but remaking healthcare should be something that takes a long time and a lot of thought. Obamacare passed at the beginning of 2010 and went into effect in 2014, and even still the exchange was so broken at first. This stuff takes time, and especially if you want to go to single payer and wipe out all the insurance companies—which, yay for that—but at the same time, that's millions of Americans's jobs. Let's wait until after September 30th to start talking about it.

This most recent bill failed, but McConnell isn't giving up on Obamacare repeal. What are you feeling right now knowing this fight isn't really over?
I am relieved right now! But I can never truly relax, because I know our President, a majority of the House, and half the Senate—including my senator, Dean Heller—think that my life and my friends' lives are just collateral damage in service to giant tax cuts for their wealthy friends. They will keep coming for our healthcare. This is not over.

What do you want people to know about what it's like to be someone whose life depends on Obamacare and you're continually bombarded with news about repeal?
Well, I mean it sucks. [laughs] It's exactly as bad as you think it would be. But I guess I would want people to know that just because you have employer insurance that you can't think that this doesn't concern you. There are probably millions of Americans who aren't really paying attention because they're like "oh I'm fine."

I don't think people really understand that so many of the protections your private insurance gives you are because of Obamacare. Annual and lifetime limits, those could come back and affect you. Whether your policy is any good or whether it's junk, all of that could affect you—this debate affects every single American and most of them aren't aware of that.

Not only can it affect what people's plans will cover, but if we go back to the days where people go to the ER instead of getting regular care, that's going to affect all of our taxes and healthcare costs.
Oh yeah. Here in Las Vegas, UMC has been perpetually in the red but now with Obamacare, most of their patients have insurance and they're finally in the black and they can expand and hire people. Going back to those days, especially in rural areas—rural hospitals are just going to fail.

This interview has been edited and condensed.

Read This Next: What the End of Obamacare Means for All of Us