Border Cantos is a timely, new and free exhibit now on view at Crystal Bridges.
During a debate last year in the Arkansas General Assembly over the private option, Rep. Sue Scott (R-Rogers), who voted for the policy, explained, "When I look at the numbers, I see faces with those numbers." It was a welcome reminder — the details of health care policy can be confusing (and the heated politics can be exhausting), but this is an issue with major stakes for people's lives. People like Tamara Williams, and the other Arkansans profiled in this story.
The private option uses Medicaid funds available via the Affordable Care Act (the ACA, or Obamacare as many call it) to purchase private health insurance for low-income Arkansans. The policy is the state's unique version of Medicaid expansion, a provision in the ACA to expand coverage that was left up to the states to pursue or not. Arkansas is one of 26 states plus the District of Columbia to expand coverage, while 24 states have refused the federal money to do so.
Arkansans between the ages of 19 and 64 who make less than 138 percent of the federal poverty level (that's around $16,000 for an individual or $33,000 for a family of four) qualify for the private option. Prior to the ACA and the private option, nondisabled adults without dependent children, no matter how poor, were not eligible for Medicaid in the state. For parents, if you made more than 17 percent of FPL, your income was too high to qualify. For a family of two, making $2,675 a year was too much to qualify for Medicaid; for a family of four, $4,054. If Arkansas had chosen not to expand (or defunds the private option in the future), people who make more than 100 percent of FPL level would be eligible for subsidized insurance on the ACA's health care marketplace, but people making less than the poverty line (or, for parents, people making between 17 and 100 percent) would be out of luck — like the nearly 5 million Americans estimated to be without insurance this year because they fall into the coverage gap in states that refused to expand Medicaid.
More than 150,000 Arkansans (and counting) have gained coverage under the private option. Most beneficiaries are enrolled in plans offered by private insurance companies, such as Blue Cross Blue Shield or Ambetter (around 10 percent of the newly eligible are routed to the traditional Medicaid program because they were screened as medically needy). Beneficiaries do not have to pay anything for premiums and have very little cost-sharing. Another 40,000 Arkansans who make too much to qualify for the private option have purchased their own coverage on the marketplace created by the ACA, with 90 percent of them qualifying for subsidies made available by the ACA to help them with the cost of premiums.
A little more than four months into the private option, the Arkansas Times has been talking to people who have gained coverage to hear about their experiences. Here are some of their stories.
For Tamara Williams, a North Little Rock mother of three, gaining health insurance came in the nick of time. Williams had her first mammogram in late February and it came back abnormal. After a follow-up and a biopsy, doctors informed her that she had invasive ductal carcinoma. She had surgery in late March and is scheduled to begin chemotherapy this month.
A year ago, Williams likely never would have gone to the doctor. "The Affordable Care Act saved my life," she said.
Prior to gaining coverage under the private option, Williams had been without health insurance for 10 years. Her kids — an 18-year-old son who has ADHD, a 17-year-old daughter who has sickle-cell anemia, and an 8-year-old son who has chronic asthma — were covered by ARKids, but Williams herself didn't have options.
She has always worked — she's been everything from a lab technician to a cosmetologist — but didn't have coverage through her jobs and made too much to qualify for the Medicaid program under the old state laws. "You have one job that doesn't have coverage, so you try to find a second job, a third job, trying to pay for insurance," she said. "If you're trying to take care of four people, you're already strapped. To figure out how to budget that in, it just wasn't possible."
Due to a pre-existing condition — hypertension — Williams wasn't able to find affordable health insurance. "Because my blood pressure was so high, insurance companies didn't want to touch me," she said. "I just had to pray that I didn't get ill."
She couldn't afford the medicine she needed to keep her blood pressure under control or the blood work she should have been getting to monitor it. She ended up running up more than $10,000 in credit card debt to pay for medical expenses. When she did have her medicine, she would take it every other day "to try to stretch it."
Eventually, she simply avoided seeking the care that she knew she needed but didn't have enough money to pay for. "It's between do I feed the kids or do I get the medicine?" she said. "I knew sometimes my pressure would be extremely high, at stroke level. I would drink vinegar and lay on my side. I taught my oldest son how to take my pulse and make sure I was OK. I told him, 'If it gets too high, just call the paramedics, it's going to be OK.' Thank God we didn't get to that point."
Williams was laid off from her job as a medical records analyst at the state hospital in July and started working full time for $11 an hour as an IPA guide, one of the federally funded outreach workers charged with helping people navigate new options under the Affordable Care Act.
She loves the work, she said, because she loves helping people and is able to share her own experiences to convey the value of health insurance. "I've met people who had to file bankruptcy just because of medical bills," she said. "I'm thinking, wow, and I thought I had it bad. My heart goes out to them."
Williams herself got covered under Ambetter and got her card the first of February. "It has been wonderful," she said. "For the first time in 10 years, I actually have normal blood pressure. I'm actually getting treated, and I don't have to wait and figure out how I'm going to pay for it. The health care system without insurance — you're going through and you're scared and you can't afford things. Sometimes you feel like you're less than human. Now I'm not worried. They asked about insurance and I had my card to give them. I know my insurance is there. If I do get a bill it's not something that's going to take me 10 years to pay off."
Williams is not out of the woods with the cancer but she is feeling upbeat.
"You kind of feel like you're getting the VIP treatment because it was like boom, boom, boom, let's get it out," she said. "I was like, wow, insurance really does mean something. You have good days and bad days, but I'm optimistic. It's mind over matter. If you hope for the best, you have better outcomes."
Williams is hoping that she'll still be able to work four days a week during her chemo treatment.
"That's me being optimistic but I can't be down more than a day," she said. "Life goes on, I've still gotta take care of my kids, I've still gotta work." Williams will likely have to look for a new job soon; the future of the guides program is in flux after the legislature banned the state from appropriating funds for outreach for the Affordable Care Act in the new fiscal year in July.
"I'll be out hitting the pavement every day," she said. "I've always showed my children you have to get out and work. I'll go dig ditches to feed my kids before I stand in line and wait for the government to hand me something." Williams added that she believes that health care is different. She doesn't consider the private option a "handout."
"I think health is something you need," she said. "How can you go to work if you're not healthy? Now that I have my medicine, I have the energy to get out here and do whatever it is I need to do to support my family."
Williams said that she was "sweating bullets" as the legislature debated whether to reauthorize the private option during this year's fiscal session. "It was like getting the breath knocked out of you. I honestly feel like the private option saved my life. Had I not had insurance, I don't know what I would have done. What do people do who find out they've got cancer and don't have insurance?"
"I feel grateful," Wiliams said. "It's about time."
Fetara Amos broke down crying when an outreach worker helped her sign up for health coverage.
"I actually cried in front of this man," she said. "It felt amazing. I felt like my prayers had been answered."
Amos, 22, hadn't had health insurance since she was 18.
"I had a very serious situation going on that needed to be taken care of," she said. "They were telling me that damage could really be done to me."
Doctors first found tumors and scar tissue on Amos' thyroid in 2008. It had been manageable until recently, when she began experiencing severe pain that at times made it difficult to walk. In December she was taken to the emergency room when she passed out after intense abdominal pain.
"They told me I needed surgery or it could get even worse," Amos said. Amos and her husband, Azel, are hoping to have a second child, but doctors told her that the surgery would be necessary before they could.
Without insurance, Amos had no idea how she would be able to get the treatment she needed. She couldn't even afford the cost of a follow-up visit.
Amos is only able to work part time right now, around 25 hours a week, making $10 an hour as a nursing assistant. Her husband, 21, works at a fast-food restaurant making minimum wage; he's hoping to go to school to pursue a career in asbestos removal.
They make just enough to get by but had been making too much to qualify for Medicaid under the old laws in Arkansas prior to the enactment of the Affordable Care Act and the private option.
When she was uninsured, Amos, who also has asthma and severe allergies, avoided going to the doctor altogether. "I never had the money," she said.
"It changed my life in a tremendous way, because it was so hard for people like me and my husband to get coverage and get insurance before this law," Amos said. "I can't tell you what I would have done if I didn't get this insurance."
For now they have been routed to the traditional Medicaid program but may eventually transition to private plans. Once she was covered, Amos immediately went to the doctor, and they were able to give her medication to manage her pain and set up an appointment for the surgery she needs.
"It felt like a ton of weight was lifted off of my chest," Amos said. "I felt relieved. We could finally get coverage and be able to take care of ourselves."
Amos is having her surgery this week to get the tumors removed. She is hopeful the surgery will allow her to safely have another child. "I pray to God it does," she said. "I've been blessed this far, and He'll keep on blessing me."
Irene Warren has been without health insurance for around 15 years. Currently unemployed, she has been unable to hold a steady job because of health problems.
"I got congestive heart failure," Warren said. "I got liver disease. I got kidney disease. Arthritis. Gout. I got it all.
"I didn't go to the doctor when I should have gone to the doctor because I didn't have insurance," she said. "I couldn't afford it. Why would I go? I didn't have the money to buy my medications or to pay for the visit."
Things came to a head in 2012, when she had a stroke.
"I did what I could do," she said. She pointed to a stack of papers a foot high. "That's medical bills. I still owe a lot. Then you're just shamed to go back to the doctor because they're going to tell you that you still owe. It hurt, you know? It was a hurting feeling."
In December, Beatrice Malone, an outreach worker who attends Madison Light Baptist Church with Warren, spoke to the congregation about new options under the Affordable Care Act.
"That day in church, that was a blessing right there," Warren said. "I didn't know nothing about it until she got up there that Sunday."
Warren qualified for the private option and is now covered by Blue Cross Blue Shield. In January, Warren went to the doctor for a checkup with her new coverage. "It felt good," she said. "Before, if you go up there and you don't have no insurance, you just feel like, I don't have nothing." Warren is now able to get the medication she needs.
"It changed my whole way of thinking," Warren said. "It uplifted my life. If something happened to me now and I go to feeling bad, I can go to the doctor."
What would Warren do if the private option policy went away?
"Just like I did before," she said. "Depend on the good Lord and make it the best way I can. Keep the faith and it's a brighter day ahead."
Warren said that for the first time since her stroke, she has been feeling better. "I know it's going to be some of them days coming. But at least now I can have something to fall back on to try to help me move back to the light."
Charles Lott works two jobs, one working with developmentally disabled men and another in a maintenance and groundskeeping position at a school in Maumelle, making a total of around $30,000 a year to support his family of four. His wife, Kaitlin, has been unable to work because of health issues. "She should be on disability, but we haven't been able to get her on it," Lott said.
Lott himself hadn't had health insurance for five years before gaining coverage under the private option this year. Complications from Kaitlin's diabetes have led to multiple hospitalizations, so they were desperate to keep her covered.
"She was always declined for private insurance," Lott said. "They'd hear she was Type 1 diabetic and they'd basically laugh her off the phone."
After Lott was laid off from a job with coverage five years ago, they kept his wife on COBRA continuation coverage (a federal health insurance program for employees who leave or lose jobs). Trying to keep up with expensive COBRA premiums they couldn't afford, plus out-of-pocket costs on top of that, they maxed out credit cards and eventually couldn't make ends meet, leaving them no choice but to file for bankruptcy.
They got back on their feet, but medical costs continued to be a challenge. Only after staying on COBRA for the full 18 months was Kaitlin able to qualify for the Comprehensive Health Insurance Pool (CHIP), a state-run health insurance program for high-risk Arkansans that was discontinued this year after the private option Medicaid expansion began. While CHIP gave her catastrophic coverage, the Lotts were still paying more than $5,000 a year (around $3,200 in premiums plus a $1,000 deductible and a $1,000 out-of-pocket maximum).
The Lotts' finances were once again at a breaking point until they were able to sign up for coverage through the private option expansion this year (Lott is now covered by Ambetter; his wife was deemed medically needy and routed to the traditional Medicaid program).
"Even working two jobs, we're still not quite able to make ends meet," Lott said. "But if we still had the $5,200 in medical costs that we had last year and previous years, we'd have to give up our house. We'd have to move in with family and we don't have anyone with enough space for us, so it could have ended up splitting up the family."
In addition to helping his family's budget, Lott, who has a number of physical ailments himself, also now has the peace of mind that comes with having coverage of his own. "It was stressful [when I was uninsured]," he said. "If something major happened, there would have been nothing my family could do."
Whereas before it was simply financially impossible for him to go to the doctor, this year he has been able to get treatment when he's sick. "I've been in for strep throat, and I had to go in for a concern about a whooping cough outbreak," he said. "Both times they got me medicated. I wouldn't have been able to do that before." Lott, whose children are 6 and 4 years old, said the new coverage options under the Affordable Care Act have "affected my ability to be a parent because it's making me able to make healthier choices for myself so I can be there better for my kids. It's providing very needed assistance to the families that need it the most.
"I'm thankful that we have it," Lott said. "I don't want to think about what would have happened to my family without it. It would have destroyed my family."
"My whole world has changed today," said Dena Kemp last week, on the day that she found out she is covered by Ambetter under the private option. She had first tried to sign up in January but faced frustrating difficulties with the enrollment process.
Kemp has Crohn's disease, a severe and incurable immune-related disease that causes extreme diarrhea, vomiting and abdominal pain, as well as a wide variety of additional symptoms outside the gastrointestinal tract. She has been without insurance for more than two years, after a short-term medical leave from a job at a Walmart warehouse ended and she was too sick to go back to work.
Thus began a vicious cycle: Kemp couldn't afford the care she needed to manage the disease. When things got really bad, she would be forced to go to the emergency room and be hospitalized (at her most sick, sometimes twice a month). She was working waitressing and janitorial jobs, but every time she got too sick, that meant lost hours of work — and the frequent hospitalizations made it hard to convince employers to keep her on. Meanwhile, the medical bills would pile up. Kemp said she owes more than $100,000. "Some they've written off, some they're still trying to collect on," she said.
Twice, Kemp and her 8-year-old daughter have had to stay in a homeless shelter when they couldn't make ends meet. "If I don't have my regular meds, I can't work," she said. "I couldn't pay my bills when I was sick. Not having insurance — that's the main reason we ended up in a shelter."
Kemp has managed to keep a waitressing job at a Mexican restaurant since last August, where she works around 30 hours and makes around $250 a week. Her hours have been cut and they no longer schedule her on busy nights because of her hospitalizations.
Now that she has coverage, Kemp is feeling hopeful.
"I would only go to the ER if I was dying," she said of her years without insurance. "I couldn't get treatment. They would give me enough nausea, anti-diarrhea and pain medicine for two or three days. Now, if I have my monthly meds, I can still go to work, I won't lose my job. Now, I can be a mom, I'll be able to take care of my daughter without help. I can finish school. It's a whole different world."
Kemp is attending the Arkansas College of Barbering and is aiming to become a licensed barber in September. She has a job waiting for her at GoodFellas barbershop.
In worst-case scenarios, Crohn's can lead to colon cancer or a ruptured intestine, potentially fatal. It's been an endless source of stress for Kemp (which itself can exacerbate the disease) trying to manage the disease without the basic care she needed. Now that she's covered, she is setting up an appointment with a doctor, eager to find out about a new medicine that came out last year ("there's no way I could have afforded it before," she said), as well as a GI specialist, who wouldn't even see her without insurance. "I should have been to a GI doctor and gotten a colonoscopy four months ago," she said, when the Crohn's flared up and became active, "but I couldn't. Now I can. Now I have peace of mind."
"For people like me, I don't make the type of money to go buy my own insurance," Kemp said. "For me to have affordable health care, it's like life and death."
***More voices from Arkansans who have gained coverage under the private option (we'll be adding more in the coming weeks):
"They told me I was on the verge of almost having a stroke when they put me on high blood pressure medicine. So I needed it and I needed it bad. Without health insurance, I never would have gone to the doctor to even find that out or to be able to get medication. They would probably be putting flowers on me right now, in my opinion."
--Herbert Denson, 57, of Little Rock, currently working and staying at Our House homeless shelter, had never had insurance in his life before this year.
"I was lost my job in January. Before, when I've been unemployed, there wasn't anything like this. You had to have insurance through your employment or you didn't have it. I'm on blood pressure medication and my prescription had run out. Once I got covered, I was able to go to the same doctor I had before and get my prescription filled. It's lifted a huge burden knowing that even though I'm looking for jobs, I don't have to wait until I have employment to go to the doctor."
--Paula Shatzer of Alexander, a 42-year-old single mother of a 2-year-old daughter, was laid off earlier this year from her job at a tax resolution company. She is now looking for a new job.
"For the most part, I've been super lucky to be really healthy. I was starting to have a feeling of, wow, I'm in my 40s — I couldn't afford to do preventative care without health insurance. I couldn't do things like get mammograms and things you're supposed to be doing at my age. I do construction work and that was always in the back of my mind — what if I fall off a roof or cut my finger off?
Through the power of Facebook, I know that just about everybody else I know thinks the ACA was a giant failure. Some people I know who went through healthcare.gov had a way harder time, but here I'm having this great experience. I used the state website and everything went fine, super flawless, no glitches whatsoever. I'm not the person who's super pro-Obama, but I really feel like a politician actually did something that affected my life in a positive way. A good thing happened in government. That's shocking. I'm covered under Blue Cross. There's nothing on that card that says I'm poor. I feel more comfortable using it."
I've gone to the dermatologist to get checked for skin cancer, had a gynecology appointment, and had a checkup, where they ran some blood tests and found some problems with my liver. I hadn't been in a doctor's office in so long.
--Shelley Jackson, 42, of Newton County, is a self-employed construction worker who hadn't had insurance in 20 years.
"I've had a pre-existing condition, Type 1 diabetes, for 20 years. Because of the ACA, I could stay on my mom's plan until I was 26. That was the first huge way that the law affected me. I just turned 26 last October, so I was going to be without insurance for the first time in my life. Because of the private option, I was able to sign up for a plan this year. Like most people, I couldn't get through healthcare.gov
at first, but I needed health insurance, I knew I was going to sign up for it. So I was really persistent and finally got it to work for me. I qualified for the private option and signed up with Ambetter. One vial of insulin, which would last me about a week, would cost more than $200. With my coverage, it was $6. It's things like that that make me so grateful that I qualify for insurance that covers my pre-existing condition and really is keeping me alive. It's really reassuring knowing that I can take care of myself the way that I need to. I wouldn't have been able to go to graduate school and pursue my professional path without health insurance. Financially, it wouldn't have been feasible. I wouldn't have been able to afford all of the medicine and the care that I need to keep myself healthy."
--Mara D'Amico of Little Rock, 26, is graduating this spring with a Masters in Public Service at the Clinton School of Public Service.
“I found out that I had arthritis in my spine and two large cysts in my uterus and I needed a hysterectomy. I had to keep putting off the surgery. I couldn’t afford it. I was to the point with the cyst and my spine, I could barely get up. [The private option] was a stopgap. I appreciate it so much. I was so sick and my body was going down fast. I was able to get good health care and I was able to use my same doctors that I had with my old insurance. That’s what the government is supposed to be there for. I am a taxpaying citizen. I’ve been working since I was 13. It’s so abused that it’s just ridiculous but it should be there for the workers. Obamacare, with all the changes, I think it’s made insurance so high [in price]. It scares the hell out of me with Obamacare, you never know what they’re going to pull. But I appreciate that Arkansas did this – it was very much there for me when I needed it.”
--Renita Askew, 52, of Conway, was laid off from her job at New Wave AT&T in December, where she had been covered by her employer. Her husband has a new job and she is planning to transition to his coverage.
“My husband said, ‘You can’t keep living like this.’ I said, ‘Well, we can’t afford what it would cost to take care of me. We can’t do this.’ He said, ‘I’ve been praying about this. We can do something.’ We had been reading about the health care law, but we didn’t think it would affect us. I had been told no so much I just knew that wouldn’t work for me. Ms. Jackie [an IPA guide, one of the federally funded ACA outreach workers] at our church is a trusted name in this community and she helped me. I’m still thanking her, and thanking my husband. It’s a godsend when you think all hope is lost and then hope arrives.”
--Lovie Wofford-Phillips, 48, lives with her husband James Wofford in Brinkley. Currently unemployed, the former schoolteacher suffers from neuropathy — nerve damage to her feet and hands as a complication of diabetes.
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