Tomorrow is the last day of this year’s health insurance enrollment period under the Affordable Care Act (ACA), through Healthcare.gov and state-based insurance marketplaces.

In just the last month both Congress and the President have taken steps to begin the repeal of the ACA–otherwise known as Obamacare. If it’s repealed, 18 million people will find themselves without health insurance coverage in the first year, according to the Congressional Budget Office. The very first Executive Order signed by President Trump following his inauguration was directed at weakening the ACA, to “…to minimize the unwarranted economic and regulatory burdens of the [ACA], and . . . to afford the States more flexibility and control to create a more free and open healthcare market.” 

Signing the order on day one of his presidency was a clear signal that Trump intends to fulfill his campaign promise of repealing the ACA.

That’s a scary proposition for Joan Fanwick, is a 21-year-old Temple University student who grew up in Wilton and graduated from Wilton High School. She was diagnosed with a rare autoimmune disorder called Sjogren’s Syndrome and stands to lose her insurance should the ACA be repealed. Within the last two weeks, she has been profiled in national online media outlets including yahoo.comSeventeen.com and PopSugar.com, with one even using the headline, “If Obamacare Is Repealed, I Don’t Know if I’ll Live to See the Next President.”

In her own words, what Joan says stands to happen if she loses her coverage:

I’m a student at Temple University, finishing my undergrad this semester and student teaching in the Philadelphia school district. I’ll be at Temple next year to get my Masters in special education. I used to work at Cider Mill’s aftercare program.

I started having joint pain when I was 10, but it took a really long time to actually be diagnosed–I was diagnosed with Sjogren’s Syndrome a year ago. It’s very similar to lupus. It causes a lot of joint damage. I have a history of having different joint surgeries, it affects my autonomic nervous system. Because of that I rely on a feeding tube and a port for IV hydration.

It’s the second most common autoimmune disease, but the way it affects me is very rare. I take 8-10 medications a day including immunosuppressant pills that some people consider chemo[therapy], twice a day. I also take immunomodulators to suppress my immune system, which is important to keep the disease from progressing. In order to just sustain myself, I need the nutrition from the feeding tube every night. To maintain my blood pressure so I can stand up and be vertical and not have my blood pressure drop, I need at least a liter of IV fluids a day–which means I have a port in my chest and a home nurse has to come once a week to put a new needle in it.

The estimate it costs per week is $1,000. But a hospitalization or an emergency room visit is going to be a lot more. In 2016 I was hospitalized about five times for a total of six weeks. I can’t even remember how many times I went to the ER–it was probably somewhere between 10-15.

Twice in 2016 I was hospitalized with blood infections. Had I not gotten IV antibiotics and the treatment I did, I would not have survived–that’s definitely not something someone on immunosuppressants survives without fast and good medical attention, and a prolonged course of IV antibiotics. You can’t just go to the ER for that.

That’s something I’m going to continue to face, because that’s what comes with the territory with the treatments I’m on and the disease I have. There’s no cure and there’s not even an FDA-approved treatment.

My premium every month is $19. My out-of-pocket maximum is $1,000. Without the government subsidy, my premiums would be $270 a month. But I wouldn’t have gotten covered to begin with without the law with a pre-existing condition. For people like me, who may need expensive medical care for their entire lives, the lifetime coverage caps are terrifying.

If the law goes away, I’m looking into moving to Massachusetts where there’s Omnicare. But frankly I’d be in a very bad position because not only would I lose my insurance but then I’d have a gap in coverage and the pre-existing condition clause would come back and really hurt me–it would make it pretty impossible to ever get insurance ever again.

In addition to being a full-time student, Joan holds down two part-time jobs, working 10-17 hours per week in order to earn money to afford her insurance costs.

I teach Hebrew School at two synagogues, and also work at the Franklin Institute, the science museum in Philadelphia. I like all my jobs, so I’m very lucky.

We told Joan that for someone who faces what she’s facing she’s got a remarkably upbeat attitude.

I do and I don’t live a normal life. I’m able to do everything normal people do for the most part, I just have to have this pretty intensive level of medical care in order to have that life. I’m a normal, functioning member of society. So many people have said, “You could go on Medicaid or disability.” Well, then I wouldn’t be a functioning member of society anymore. Although I don’t think those people realize that taxpayers pay for that, too, and it’s actually much more expensive.

I want people to understand that right now it’s being voted on by the Republicans to repeal every part of the law. That no part of the law is safe. So that even if you have coverage under your employer, things like lifetime caps can come back; out-of-pocket maximums are going to go away; birth control [pills] will no longer be covered. It definitely affects people like me extremely, but it affects everyone. And there’s not currently a replacement in line. Pre-existing conditions are not safe. Every week people say, “Oh, he’s got this…” but what we’ve seen in the last two weeks, that’s not the reality.

Connecticut legislators and insurance are not a very good mix, because so many of the major insurance companies have their headquarters in Hartford. When the ACA was first passed, the reason there was no public option was because [former CT Senator] Joe Lieberman was the last vote they needed and he would not vote for it because of the lobbying money he was getting from insurance companies during his last term.

Connecticut has some of the worst exchange plans–I had to change my residency to Philadelphia in order to qualify for a Pennsylvania exchange plan. My parents’ exchange plan only covers doctors in Connecticut, which is a major problem not just when I’m in Pennsylvania, but even when I was in CT I used to go to New York City for medical care, so it wouldn’t even cover my doctors when I was living in CT. It helps that Pennsylvania has big cities with major medical care facilities within the state.

Temple University does offer health care plans, but the enrollment periods are such that I would have to have a 2-3 month gap in my coverage. We just started an enrollment period for the next six months, but it doesn’t start until February, so I would have had a gap in coverage; it’s worse in September. You can’t just enroll whenever, and it makes it very complicated. It’s designed for a healthy college student, not someone who’s chronically ill with major medical concerns.

Trump’s Executive Order was a very spiteful thing for him to do, but he did it to ‘show’ he was going to do something. I don’t know how much it will actually affect the ACA. But it’s terrifying that it was one of his first things he did in office. It’s a total abuse of Executive Orders–every single one he’s signed in the past week has been an abuse. But especially the one about ACA–that’s not how Executive Orders should be used. They shouldn’t be used for most domestic policies–healthcare definitely, unless there’s someone dying or that he’s trying to save. He’s trying to pad the pockets of people.

I hope people will be more educated on how they will also likely be affected by a repeal. Call your Congressman, call your Senators. Write letters. Post on Facebook–I know people say it’s like an echo chamber but the more we get stories out there, putting a face to the issues. All the issues, not just this one.