July 24, 2017
You probably don’t know Julie Negrin’s name or her story, but if Trumpcare passes the Senate, she’s likely to become a viral sensation. The 45-year old nutritionist isn’t exaggerating when she says she will die if the Affordable Care Act (ACA) is repealed and replaced by Trumpcare. She’s been saying that since the GOP announced its replacement health care plan; after all, without insurance, or with substandard insurance, her body’s already compromised systems will collapse. Over the past week, however, she’s been saying she’ll die under Trumpcare for a different reason. Negrin has made a big, life-changing decision. If Trumpcare passes, she vows to become a martyr for the health care cause by suspending all medical treatment and, as she put it in a Facebook post, “leverag[ing] the fuck out of my slow, sad, suffering, death.” Her hope? “To activate a movement to restore our healthcare system.”
It takes thousands of dollars each month to keep Negrin alive, and with her current ACA plan through Blue Shield*, insurance covers most of her medical expenses, even mental health appointments (“There’s a lot of trauma with having organs cut out”) and some naturopathic services. Without ACA coverage and under Trumpcare, her pre-existing conditions will most certainly mean she won’t be able to obtain insurance – not any she can afford, anyway. And there’s no way she can pay out of pocket for the dozens of monthly medical appointments and costly treatments, as well as the check-ups she needs to make sure her multiple cancers remain in remission and that her body hasn’t been invaded by new ones.
What will happen if ACA is repealed and replaced by Trumpcare? “I mean, I’m dead, right? I’d probably just die from the stress,” Negrin says. “I have family in Canada and a dear friend in Holland, and I think I’d have to leave. I’d sleep on someone’s guest bed to stay alive in a country that takes care of its citizens.” It should go without saying, but these days require frequent restatements of the obvious: She doesn’t want this to happen. Negrin, who was a nutritionist, dedicated her life to educating people about how to eat better, how to take care of themselves. “I’ve worked in school and low-income environments. I’ve used my expertise to help improve the health of people. My impact has been far-reaching. To have my government say that I don’t deserve to live and that it’s my personal responsibility to handle whatever I face now without their help is pretty frustrating, when I literally devoted my entire career and life to helping other people stay as healthy as they can,” she says.
Negrin isn’t the only one who will be affected negatively by Trumpcare. The most recent version of the House GOP’s health care bill has been analyzed by the Congressional Budget Office, which determined that 17 million people would lose or simply not have coverage in 2018 if this plan goes into effect; in less than a decade, that number would increase to a projected 27 million. For people like her, who have a cluster of pre-existing conditions, the CBO predicted that they “would ultimately be unable to purchase comprehensive non-group health insurance at premiums comparable to those under current law, if they could purchase it at all.” And Negrin’s statement that she’d die without insurance isn’t hyperbole. Late last month, Dr. Steffie Woolhandler and Dr. David Himmelstein, writing in the Annals of Internal Medicine, presented research evidence to substantiate their belief that adequate health insurance saves lives and inadequate insurance, or the lack of it entirely, increases mortality. “The odds of dying among the insured relative to the uninsured is 0.71 to 0.97,” they wrote.
In case you’re wondering, Negrin hasn’t been sitting around having a one-woman pity party, though no one could blame her had she chosen to do so. Instead, despite the fact that she lacks four organs – in 2014, her ovaries, uterus, appendix, and most of her colon were removed – and that she has to spend hours each week hydrating herself through a port inserted into her chest, Negrin has been fighting like hell to educate senators, representatives, and constituents – including her own friends – about what the repeal of ACA would mean to the Americans who are alive because of it.
Negrin, who has a genetic disorder called Lynch Syndrome, took all of her energy after the Trump win and began channeling it toward two main activities. The first: Reading, reading, and more reading about ACA and learning about its finer policy points. “I’m no dummy,” she says, “I knew this would be bad. Trump was already talking about repeal in October. I felt like I was standing on the edge of a cliff already, and when he won, I felt like someone shoved me over.” At this point, Negrin might just be one of the most well-informed amateur experts on ACA. Ask her anything.
But you don’t actually have to because Negrin is an open book. The second activity that’s been taking up her time these days is documenting her own condition and its agonizing challenges in excruciating detail on her website and on Facebook. On June 5, she announced the launch of her new site, where, she wrote, “I'll be covering uncomfortable topics, taboo topics, menopause, hormones, pooping, digestive issues, mental health. ALL OF IT.” Since then, followers and readers have learned about Negrin’s medical history: how Lynch Syndrome precipitated three kinds of cancer and the removal of four organs, and how these conditions continue to affect her daily life. Though she’s just had a check-up the second time we speak by phone, and has learned she has no new cancers and no recurrences, she’s not exactly celebrating. “I’m still scared,” she tells me. “Until this thing is squashed, I have trouble sleeping, I have trouble concentrating. It’s very similar to what people face during trauma, I think.”
Her worries about ACA repeal compound her existing challenges, which include sticking to a severely restricted diet of chicken broth, avocados, eggs (“I eat 8-10 a day”), vegan coconut ice cream, and very small amounts of fish. Even with this soft-food diet, digestion is painful and Negrin’s days – and often, her nights – are spent taking measures to coax what’s left of her digestive system to do its job. Readers of her blog and Facebook posts know her routine: “standing while I eat (no folding my intestines over!), chewing a lot and eating slowly (got to break it down as much as possible), drinking lots of warm water (so it flushes it through), walking on the treadmill (so it jiggles down), rolling on the knobby roller on both my stomach and back (to stimulate peristalsis which is the wavelike motion that moves food through intestines), take a bath and give myself a belly massage (the warm water and Epsom salts help cut the pain).”
Negrin realizes hers is an extreme case, but what she wants people to understand is that while ACA repeal is literally life or death for her, it will be catastrophic for thousands, if not millions of Americans. And this, in addition to her malfunctioning digestive system, is what keeps her awake at night. Why aren’t more of us mobilizing? Why are we allowing our public servants to threaten so many lives? “I think we have to realize we’re going through a catastrophic national event and we have to recognize we’re all dealing with it in different ways. The way out of this is going to be a unified effort to take down the corrupt effort,” she says. What does that mean tangibly? That’s what she’s attempting to convey online every single day. “A lot of this is about cracking consciousness,” she says, “and I’m using my body and my story for the cause.”
As the GOP got closer to rolling out its new healthcare proposal, Negrin’s blog and Facebook posts took a depressing turn, a glimpse at just how critical this moment is for anyone who cares about ACA to take the kinds of actions she’s encouraging. In a July 5 post titled “Death sounds easier”, she wrote,
This is some ugly truth…. How long can I keep doing this? I keep asking myself this.
How long can I replicate parastalsis so that my intestines (barely) move the food through?
How long can I keep giving myself IV bags to keep my body functioning?
How long can I eat this monotonous diet of barely nothing? (Which, of course, isn't that apparent in my frame due to a slowed metabolism from menopause and chemo. Annoying under normal circumstances but this sluggish metabolism is probably saving my life.)
How long can I fight my own government from killing me?
How long can I navigate our over-burdened medical system in an effort to figure out what's wrong with me?
How long until more cancer arrives?
How long will each organ system remain functioning?
HOW MANY YEARS CAN I COPE WITH PAIN, ISOLATION, STRUGGLE AND UNCERTAINTY?
How long indeed?
*which, she learned as this story went to publication, will end in 2018, as Blue Shield is dropping out of the exchange in her state.