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Tuesday, December 20, 2016

Anxiety and Sleepless Nights: How People Are Coping with Threat of Losing Health Coverage

Cate Bonacini

Director of Storytelling Initiatives

For over five years, Cate Bonacini has been talking to consumers about their health care, helping to build and now manage Families USA’s story bank. That means spending hours on the phone talking to people about accessing and affording their health care and health coverage. And fielding requests from the media and others for stories that will help illustrate one of the central social justice issues of our time: The struggle for affordable health care.

In this Q&A, Cate talks about what she's been hearing since the 2016 election.

What has changed in your work since the election? 

Cate: By the time Hillary finished her concession speech, I had already received dozens of calls and emails from people around the country frantic about what the results might mean for their health coverage. By the time I arrived home, I had started to speak to people who had come forward to tell their stories around the lead-up to passing the Affordable Care Act, the opening of the marketplaces (exchanges), and the Supreme Court cases, as well as people coming forward for the first time. And by the time I sat down to dinner late that night, some of those families had already begun to open their doors to film crews and speak on the phone with reporters. 

Since then, I’ve corresponded with countless people who are at risk of losing access to health care. 

These are people with multiple sclerosis, cystic fibrosis, leukemia, breast cancer, strokes, heart conditions, transplants, diabetes, asthma….the list goes on. But I’ve also talked to small business owners, entrepreneurs, and contract teachers who are at risk of losing their way of life. 

I’m constantly amazed by the strength and courage of those who are willing to stand up and give voice to others in their position to make sure that lawmakers don’t steamroll over millions by repealing the law.  

Can you describe some of the themes of the conversations you’re having?

What’s really clear is that people are scared of all the uncertainty.

Cate: What’s really clear is that people are scared of all the uncertainty that surfaces when lawmakers start batting around ideas like privatizing Medicare or proposals to change programs that they credit with providing life-sustaining care. Add to this no solid path forward, and it becomes a recipe for serious anxiety. 

I’ve heard from people who receive all kinds of insurance and trust me, not everyone is a cheerleader for Obamacare. But what has been almost universal is that people largely believe that we’re better off than we were 10 years ago, or even 5 years ago. They remember high-risk pools, underwriting, lifetime caps, and other pre-ACA practices. They want improvements, not to throw the law out entirely. 

It’s heartbreaking to talk to a mother who fears that her son who aspires to be a teacher may have to drop out of college in order to find a job that will pay for his insulin. Or a part-time worker who is recovering from cancer ask her boss for more hours and benefits, in the event she no longer has access to expanded Medicaid, only to be turned down and told, “those kinds of jobs aren’t available.” Or a family just now getting back on their feet after the recession who may lose it all again without insurance.

You’ve been talking to people about their health care for years now. How are the stories you’re hearing now different from before the 2016 election?

Cate: You know, when I’ve spoken to people who are “ACA skeptics,” I’ve always had to contrast the conversations before and after the marketplaces opening. So my answer to this is pretty similar to what I’ve been saying to people for years.  

Before the marketplaces opened, I remember talking to a man who was suicidal because it was easier to kill himself then to declare bankruptcy and leave his family with debt. There was an extreme sense of hopelessness that came with those conversations, and they largely stopped when the Marketplaces opened. 

People are once again spending sleepless nights worrying about their future and what they will do without insurance.

At that time, people were giddy about opening a new business or having access to insurance for the first time. I remember one man who was in his fifties and cried because he had an insurance card in his pocket for the first time since he was 18. He’d been told he was insurable for decades because of his profession. Not everything was perfect, but there was some hope that hadn’t existed before. 

But now, that hopelessness has started up again. People are once again spending sleepless nights worrying about their future and what they will do without insurance. They’re talking about stocking up on supplies, making tremendous sacrifices, closing businesses, and other measures. Families are going back into survival mode to figure out how to deal with whatever may come. 

What do you wish lawmakers would understand about the people you’re speaking to?

Cate: I keep going back to one of my first conversations after the election. 

I spoke with a woman who had been laid off during the recession and spent down her retirement savings while trying to find full-time, steady employment. As a result, she lived for years without any kind of insurance. When the Marketplaces opened, she was able to enroll in a plan and was then diagnosed with cancer. She’s stayed covered, through several relapses, and has just completed her treatment. She’s finally found part-time employment and her life is coming back together. 

I wish lawmakers would understand that this is life and death for millions. Their actions do have very real consequences.

She’s at a high risk of another relapse because of the kind of cancer she has. But now, she’s set to lose her access to coverage. That means, if the cancer comes back, she won’t have a way of knowing or treating it without insurance. She has enough knowledge to know she has a ticking time bomb in her body, but no tools to diffuse it. That’s cruel and inhumane. And her story is not unique—I’ve heard multiple variations of it over the last month and a half. 

Without exception, every person I’ve spoken to works incredibly hard or they are in the middle of aggressive treatments. They resent the stereotype that they are “takers” and want the public to understand that the protections offered by the ACA are the only way to ensure that they can get coverage.  

I wish lawmakers would understand that this is life and death for millions. Their actions do have very real consequences. 

I’d invite any lawmaker to sit down with me, or any of the people I’ve spoken to, and have a real conversation about what it means to live without health care.

What’s your view on sharing consumers’ stories?

Cate: Many of the people I speak to are surprised that someone not only read their story, but that someone took the time to call them back and talk to them about their experiences. There's not a day that goes by where I don't talk to a colleague about a conversation I've had with a storyteller. 

Stories fuel our advocacy and drive us to do more. I'm proud to say that I work for an organization that honors and strives to elevate consumer voices in all aspects of our work.

If you’re interested in talking about what’s at stake for you, please tell us your story.