The Push To Repeal Obamacare "Feels Like People Don't Want Me To Be Alive"

Photographed by Andrea González-Ramírez.
Shannon (right) has several chronic illnesses.
As a light rain poured down on Thursday evening, a small group of protesters started to gather for a "die-in" for healthcare at Foley Square in New York City. The cheerful mood of the organizers, who welcomed each person with a smile and thanked them for coming to the protest, contrasted deeply with the grim messages written on signs shaped like tombstones.
"R.I.P. Mama. Died in childbirth without health insurance," one sign read. Others said: "Died. Untreated breast cancer," "Chose food over meds." "Treatable disease, no insurance," and "The ACA repeal killed me."
The reason about 50 people had come together on a rainy evening was the same reason 80 protesters got arrested in Washington, D.C on Monday — because they oppose the Republican Party's effort to repeal and replace the Affordable Care Act, better known as Obamacare.
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Just a couple hours before the "die-in" took place, GOP senators unveiled a revised version of the Better Care Reconciliation Act (BCRA.) The bill remained fairly similar to the Senate's original version, but included a controversial amendment that could deregulate the health insurance market and leave millions of Americans vulnerable. Even though the BCRA doesn't explicitly allow insurers to charge people with pre-existing conditions more, experts worry that the amendment could hike up premiums for them anyway.
"I think it's terrible that we have to do all this fighting in 2017 for humans to be able to live," 18-year-old Amy Erlanger, who recently was diagnosed with focal epilepsy, said. "If our health insurance goes away, many of us are going to die."
Protesters were thinking of this changes when they laid down on the steps of the square's fountain and held up their tombstones in absolute silence as the rain poured in. A few curious bystanders stopped by to check out the scene.
About 15 minutes later, organizers asked people to sit up and share, if they wanted, what their signs read and why they were at the protest.
The stories started pouring out, with people's voices varied from angry, to hopeful, to heartbroken, to defiant. There was a mom whose child has several learning disabilities and depends on Medicaid. There was a young female cancer survivor who had been in remission for only a year. There was a young male freelancer who was able to get health insurance thanks to Obamacare.
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One of those sharing their story was Shannon, who said the women in her family have a history of chronic illnesses, including cancer. The 28-year-old has several chronic illnesses, and asked that her last name be withheld.
Some of Shannon's conditions include postural orthostatic tachycardia syndrome (POTS), a condition where changing from sitting or lying down to standing up triggers a sudden, large increase in her heart rate and can lead to lightheadedness and fainting; mast cell activation syndrome (MCAS), an autoimmune disease where mast cells don't function properly and can lead to severe allergic reactions; and hypothyroidism, where her thyroid gland is not producing enough of certain important hormones, which can alter her body's chemical reactions.
"If there's anything off [with my conditions], it's sort of like dominoes. And then it takes a really long time to get them all back under control," she said. "Me having healthcare and keeping those under control as I can, saves so much money in the long run on me nothing getting worse and end up going to the hospital, but also it makes me able to exist in society."
Shannon, who lives in Brooklyn, is currently on Medicaid. If the BCRA becomes law, she's afraid she would lose her health coverage. And all her illnesses qualify as pre-existing conditions, which could potentially make it harder for her to get insured under the BCRA.
"At the moment, I'm not working full-time, but hopefully if I can get my health issues more under control that would be a possibility," she said. "But if I can't, I can't just get less sick just because I want to."
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Even though Shannon probably won't die because of her health conditions, her quality of life would really diminish without the appropriate healthcare. As the effort to repeal and replace Obamacare keeps moving forward, she hopes more young people will get involved in the fight, and that they understand that being young doesn't mean they'll always be healthy.
"I was a normal college student, I was totally fine. And then one day I was walking home from the dinning hall and I just collapsed. From that day on, I was sick. It was like a light switch," she said. "That sounds silly, so overdramatic, but that's really what is like. At any moment, you could suddenly have a health issue."
She added that anyone can get more involved by being vocal.
"I'm feeling very scared and alone because it feels like people don't want me to be alive and that's hard not take personally," she said. "Just speaking out and being vocal, and calling your congresspeople and senators, and getting involved at any capacity you can locally or in D.C. is helpful."
Mina Schultz knows the power of reaching out to your representatives. The 31-year-old cancer survivor was first diagnosed when she was 25. She needs medication, regular check-ups, and other types of care — but if Obamacare is repealed, she could lose access to the healthcare she needs.
The West Virginia native recently moved to New York City, and before she left, she was actively fighting against the repeal and met with her senators, Joe Manchin and Shelley Moore Capito.
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"People don't always know the importance of actually making the call to your senator. [When I met my senators] they reiterated the fact that it means something to show up at their offices, call them, write them letters," Schutlz said. "I know that writing letters to the editor — senators read that. They read the newspapers in their local towns and cities."
She added, "You don't have to come to a die-in to make a difference. You can pick up the phone and tell them, 'I disagree with this bill. Listen to my voice."
Organizers of Thursday's "die-in", such as Katherine Siemionko (who was in charge of the Women's March in New York City last January), hoped the demonstration would catch the attention of those in Washington, D.C.
"We want people to recognize that human lives are on the line with healthcare," said Siemionko, who identifies as a conservative. "Maybe visually that message would translate better to the government and they'll realize, 'Hey, I'm voting against lives.'"
She added, "American lives are more important than American dollars."
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