After Daughter's Tragic Death, Mother Begs for Single-Payer Health Care

Amy Vilela believes her daughter was denied proper care due to her insurance status, and now wants a system not driven by profits

Amy Vilela's daughter, Shalynne. Credit: Courtesy of Amy Vilela

After the hasty passage of the GOP health care plan, Donald Trump and congressional Republicans rejoiced. The president held a triumphant ceremony in the Rose Garden, backed by a grinning Paul Ryan and Mike Pence and a sea of other mostly white, male Republicans. "We're going to get this passed through the Senate. I feel so confident," Trump said.

The week following those festivities, GOP lawmakers had to face their constituents. In town halls around the country, protesters blasted Republicans for passing a bill estimated to leave 24 million people without insurance – in some cases without having read the thing.

Even the biggest backers of the American Health Care Act, Ryan and Trump, can't seem to make a convincing case for the bill. A poll released last Wednesday shows support for the plan had dropped over the past week, from 42 percent of voters to 38 percent; only 13 percent strongly supported it.

GOP lawmakers tried to justify their votes by dismissing fears that the plan could lead to preventable deaths. At a town hall for Rep. Raúl Labrador, an audience member bluntly asked why he was dooming sick people on Medicaid to death. "No no, you know that line is so indefensible. Nobody dies because they don't have access to health care," Labrador snapped.

After his gaffe went viral, Labrador wrote a Facebook apology, admitting that his response was inelegant. He then blamed the media for taking it out of context and tried to explain what he really meant. "In the five-second clip that the media is focusing on," he wrote, "I was trying to explain that all hospitals are required by law to treat patients in need of emergency care regardless of their ability to pay and that the Republican plan does not change that."

Labrador is technically right about that. Emergency rooms are supposed to treat all patients, regardless of whether they have insurance. But that's not always how it works. Struggling to meet need in overcrowded emergency rooms – in part because uninsured people don't exactly have a multitude of options – medical staff might make decisions on how they treat patients based on their insurance status. It's a practice known as "wallet biopsy."

Amy Vilela thinks that's what happened to her 22-year-old daughter Shalynne after she went to an ER in 2015 displaying classic symptoms of deep vein thrombosis, a highly dangerous condition, but one's that's also highly treatable – if caught in time. According to the family's lawsuit against the facility, when Shalynne told hospital staff she didn't have insurance, they pressured her into leaving and failed to give her proper care.

In a grim twist symptomatic of America's bewildering insurance system, the week after her daughter's death, Vilela opened a letter notifying Shalynne that she could sign up for COBRA, a government program that would have allowed temporary continuation of her employer-based insurance from a previous job. Looking over the documents, a detail jumped out at Amy: Her daughter had still been insured at the time of her ER visit, but she hadn’t known – so, Vilela alleges, she was treated like an uninsured person. Her family believes this ultimately led to her death.

(Centennial Hills Hospital did not respond to multiple requests from Rolling Stone for comment on the case. Centennial Hills' lawyers previously said in a statement to a local news station, "Centennial Hills Hospital does not require insurance before rendering treatment in accordance with its legal obligations. This patient's insurance status played no role in the care and treatment she received.")

Rolling Stone recently spoke with Vilela about her daughter's death, the AHCA and how no American is safe as long as the U.S. health care system is primarily driven by profit.

Tell me about your daughter.
She was very driven and was really just starting her life. She was funny, very funny. And determined. She had just moved from Kansas City to Vegas to be closer to her family. Because we're a military family, we moved a lot, and she was happy the complete family was together again.

She'd applied for and secured a Nevada CNA [Certified Nurse's Assistant] license. Her main concern at the time was just making sure everything lined up – she was very fiscally responsible. As soon as she arrived, she had two jobs, and was enrolling in nursing school. She was so happy and full of dreams and ambition. She had her whole life ahead of her and was the happiest.

And what happened to her?
She injured her knee in 2014, had a torn ACL. In April 2015, she got a follow-up MRI, and was told to continue to wait and see how it feels before getting surgery, since those type of injuries often heal on their own. Then she drove 22 hours from Kansas, and her leg started swelling. She would complain every day, but we thought it would resolve itself.

But as time went on, it wasn't just her knee – her entire leg was swollen. One day I got a call and I could hear her screaming in the background. I even got a little irritated, like, "Obviously, just take her to the ER. She's in a lot of pain." She presented to the ER on a red and swollen leg, reporting 8 out of 10 pain.

When she went to the ER, the staff immediately asked her if she had insurance. She cried, "No!" And, in my opinion, that really sealed her fate.

My husband called his insurance company and then called me. I said, "Just have her be seen now. Call insurance later on, or we'll pay for it. We'll figure out finances later." But the receptionist [pressed] her, "If you leave now, it won't cost you anything."

She told them that something was really wrong with her leg – begged for an MRI, pain meds, all to no avail. I was on the phone with her, like, "I don't understand what the problem is. Just tell them what you need." She started crying, "I have. They're not helping me." They took an X-ray, but as far as further testing, they refused. They just said, "Go get insurance and see a specialist." They didn't even give her Tylenol.

There's text messages to her boyfriend saying, "I'm in so much pain still." They discharged her in excruciating pain. She took pictures of how swollen her leg was. It's like she's talking from the grave, with those pictures of her swollen leg. If insurance status didn't matter, she would still be alive.

So what was actually the matter with her leg?
In addition to a red and swollen leg, she had a swollen calf. That screams deep vein thrombosis. In addition, she's half African American and half Caucasian. [Ed. note: Some studies suggest African Americans might be more susceptible to blood clots.] She had many more risk factors for a blood clot: She had PCOS [Polycystic Ovary Syndrome] and was on birth control.

After she was let out, she ended up flying to Kansas. Flying also heightens the risk of blood clot. And when she was in Kansas, the blood clot broke off and she had a massive pulmonary embolism.

Her dad tells me that she woke up that morning clutching her chest in fear, saying, "Daddy, call 911." She coded in the ambulance. So I know that in the last moments of my daughter's life, she was in extreme pain and extremely scared.

When I walked into the hospital room, I was in shock. It finally hit me how bad it was. I couldn't imagine it would be this bad. She was only 22. But you could smell the blood, because she was hemorrhaging so much. By then she was intubated. Seeing that was so traumatizing. And I was saying, "Fight, Shalynne. Fight this."

As time went on, I could see my daughter slipping away. We knew she was brain dead. I knew she was an organ donor, so we decided she should go ahead and cease life support so they could use her heart valves and bones.

They told me I should leave while they took her off life support, but I wasn't going to leave her alone there. I remember saying, "I'm right here, I'm not leaving you." It's a really hard decision to make, but there was no hope because she was brain dead.

So I climbed into bed with her, holding her. It was really surreal. I had not held her that way since she was a young child.

Doctors told us, "This is a massive clot." They couldn't believe the ER staff in the original hospital had missed it.

She took her last breaths, and I remember my personality split. I didn't want to live at that moment. It took me a year of staying in bed.

The moment I decided to start becoming an activist was when my sister looked at me and started crying, "I've lost Shalynne, and now you're killing yourself." Because I was pretty much just isolated. My sister said, "Are you going to fight to help others or are you going to kill yourself?" So I decided to try and help others.

Before this happened, would you have thought that this kind of thing was possible in America?
Never. I would never have thought this could happen. I can understand why many Americans can't wrap their heads around it, can't grasp that this is happening in the U.S. A lot of people say, "This doesn't happen in the U.S., she's lying." I can understand how people would feel this way.

But when I started researching how this would happen, my eyes opened. How many Americans have tragic stories like Shalynne? I know she wasn't the first, and I know she won't be the last, until our system is no longer profit-driven.

Before this, I was totally oblivious, and other people might be too. That's changing as people are telling their stories, waking up, hearing and talking about what's happening. We're talking about health care. This isn't just one hospital – that's just the symptom of the real disease, which is our profit-driven health system.

You'd had a very different experience when you'd been to that hospital previously, right?
Yeah, my experience was completely different. I have acid reflux, which is really uncomfortable, but not dangerous. But when I went, without even asking, I was given multiple tests: an EKG, an MRI, pain meds. I got the full workup, above and beyond. In my opinion, that's because I'm insured and I'm a white female.

I believe Shalynne's inability to provide insurance information – it's like they handled her in a way where they were trying to not find an emergency condition. It was a wallet biopsy, the bare minimum. Actually, even below that – it was just to get her out the door.

If I were CFO of a hospital that owes shareholders maximum profits, that's the wise business choice. But it's the inhumane choice. These are patients, they're not profit margins.

Paul Ryan might point out that this tragedy happened in the Obamacare era, and that's why they're looking to overhaul the system. What's your answer to that?
Well, Paul Ryan would technically be right that the Affordable Care Act did not save Shalynne's life. There's no problem in attacking flaws in the ACA. He's been successful in pointing out some of the problems. But I don't see the solution being the so much more horrendous AHCA.

Plus, some of the ACA's flaws are really because they blocked key components of the ACA, such as Medicaid expansion.

His claim that the AHCA is the solution to the shortcomings of the ACA is misleading and disingenuous. The AHCA is nothing but a huge tax cut for the wealthy at our expense.

The real problem is a profit-driven system. That's why doctors' offices spend so much of their time arguing with insurance companies. They're legally required to function in a way that increases the wealth of their shareholders. All politicians know this. People like me know this.

Do you think Shalynne would still be alive under a single-payer health care system and in a system not driven by profit?
Yes. She would be alive. And we need to go forward, not backwards, to make sure people don't die because of lack of health insurance. Imagine if the AHCA is approved in the Senate?

Meanwhile, under a single-payer system, billions of federal dollars annually could be redirected toward patient care.

Right now the answer really is to take profit out of our health care system, and join the rest of world with a single-payer system. That would have saved her life. And doctors could be doctors again and not negotiators with insurance companies.

Pretty much everyone seems opposed to the AHCA: doctors' groups, hospitals...
The only winners in this are the insurance companies. And who's making contributions? Lawmakers get huge amounts of contributions from the health care industry.

And I've always said, this is not a partisan issue. Those who are fighting single-payer are doing so for financial or political reasons, and using scare tactics.

But we're the only ones who handle our insurance like this. Other countries are looking at us like we're crazy. Like, "Why is it so hard for you to understand single-payer?" They're shocked – they don't understand why Americans don't get it. But it's because politicians are feeding Americans the wrong story and making health care into a partisan issue.

If you were to get a Republican and a Democrat together and just tackled the issue, just asked them, "Do you want to have insurance? How do you want your loved ones to be treated?" – if we really talked about the issue, all of us would agree that single-payer is the answer. I don't want other people to experience the pain I've gone through.

What about reactions by politicians like Orrin Hatch, who said last week that people "on the dole" want every dime they can get?
It's a really inhumane outlook. These are human beings. Also, Shalynne undermines every argument. She was not abusing the system. My husband is in the military. We are a family doing all the things you're supposed to do that we're told will mean things will turn out OK.

If anybody thinks they are safe, that is a fallacy. You're not safe.

I would tell the Senate, "You need to push single-payer." Americans are waking up. We're waking up, we're watching, and we're holding our representatives accountable. There shouldn't be 22-year-olds dying from a lack of health care. In fact, no Americans should be dying from a lack of health care. How many more Americans have to die? This is not about your political ambitions or your donors.

We shouldn't let our fellow Americans die. Health care is a human right. It's not OK that Americans are dying. When I saw Republicans celebrating, it was so disgusting to me. To them, it's all a political game. They're rejoicing as millions of Americans will go without coverage.

How would they feel if it were their daughter? How would they feel if their daughter were Shalynne?

This interview has been edited for length and clarity.