Stan at the White House with President Donald Trump. Courtesy of Stan Summers
“There is nothing I dread so much as a division of the Republic into two great Parties, each arranged under its leader and concerting measures in opposition to each other. This, in my humble apprehension, is to be dreaded as the greatest political evil under our Constitution.”
—JOHN ADAMS
Talan’s Story
Stan Summers and his son, Talan, drove through the sprawling farmland of Northern Utah just behind the Wasatch Range, when they encountered traffic. With the passenger’s seat slightly reclined and oxygen tubes draped across his body, Talan turned to his father and commented, “Dad, at least we get to be together a little longer.” The twenty-six-year-old had spent his whole life in and out of doctor’s offices, but he always managed to see the glass as half-full, no matter the circumstances. Today was no exception.
As the father and son progressed slowly along I-15, the conversation took a more serious turn. Leaning back in his white T-shirt, black sunglasses, and gray Under Armour hat, Talan urged his dad, “If I die, please don’t be sad. I know where I’m going.” As a strong person of faith, Talan knew exactly where he was going, but he still had one reservation: “It just makes me nervous who’s going to meet me there.”
Stan broke down in tears, assuring his son that there would be plenty of loved ones on the other side waiting for him. The affectionate father then shared an extraordinary moment in life that he had never mentioned before. Two months earlier Stan had turned fifty-two years old, making him the same age as his mother when she lost her battle with cancer. Even though Stan’s mom had passed when he was just a teenager, that didn’t stop her from reaching out when Stan needed her most.
Talan was born prematurely at just twenty-two weeks and weighed a meager 2 pounds 10 ounces.1 He had multiple holes in his lungs and underwent heart surgery at just ten days of age. Talan spent a full two and a half months in the hospital with Stan and his wife, Jennifer, at his side every step of the way. Filled with grief over the condition of his newborn son, Stan dropped to his knees and began praying. “I can’t go through this alone,” he told God, pleading with his maker to save his son. As Stan prayed, he remembers clearly hearing the voice of his mother, “What makes you think you’re going through this alone?”
“I didn’t realize I never told Talan that,” Stan disclosed. After relating the story, Stan told his son, “From the day you were born I knew that there were great things involved. I had no idea how long you were going to live, but I knew your life was here for a reason. You have no idea how many lives you’ve touched.” Talan and his family had indeed touched the lives of many, through his dad’s public advocacy and Talan’s Facebook page—“Talan’s Fight—Never Give Up”— which gets up to ten thousand views per post.2 Stan often puts religious material on Talan’s widely read page and receives criticism for doing so. But in the face of disapproval, something told Stan that one particular photo needed to go up: a picture of Talan kneeling by his bedside, praying for his mom.
In addition to Talan being sick, Stan’s wife also suffered from health problems. She went for a run-of-the-mill root canal, but the dentist drilled into her sinuses, which became infected. “My boy wasn’t doing good, and she wasn’t. I almost lost both in a small amount of time,” Stan recalled. During that difficult period, Stan snapped a picture of Talan kneeling by his mom. With oxygen tubes protruding from his body, Talan prayed out loud for her recovery.
Torn over whether to post the picture, Stan said, “I listened to that small voice.” Two weeks later Stan received a message from a local woman on Facebook. “I just want you to know that I came home and was about to commit suicide,” she wrote. “Then I saw that post about Talan praying for his mom, and I thought if Talan could do it and worry about someone else, then I can do it too.” Astounded by the revelation, Stan told me, “Usually you don’t see the answer to your actions come back that quick . . . Now I pass her in the grocery store and she winks at me because she knows that I know.”
Talan has helped many through his outward profession of faith, but it doesn’t always feel that way. “Dad, I just don’t feel like a hero,” Talan told his dad during that car ride home. Talan’s rare disease—IgG4-related disease, or scleroderma—presented few visible symptoms. While many individuals with chronic disease display physical evidence of their illness, Talan does not: no hair loss, no wheelchair, no outward indications of sickness, leading his peers to question his very real ailment.
Growing up, Talan would call his dad and ask to be picked up from school. Despite feeling sick, he could never fully explain what was going on. Talan would return home looking very pale and eventually start throwing up. “We knew something was wrong, very wrong, but could never find it,” Stan said.3 Throughout his adolescent years, Talan tried to overcome the disease, harnessing his natural athleticism on the football field and basketball court despite his physical struggle. “He was teased by friends, school teachers, yes school teachers and coaches that he was always sick and faking it,” Talan’s mom, Jennifer, wrote on Utah Rare, a support group for people with rare diseases and their loved ones.4
Talan’s health problems worsened during his sophomore year of high school when he and another player had a head-on collision. “When Talan went to get up he couldn’t,” Jennifer wrote.5 He had broken his back and had to undergo intense surgery, having hardware installed and removed a year and a half later. He moved from his local high school to a community high school, where he was still derided by those around him. Teachers accused Talan of being lazy and unmotivated, but his dad knew Talan’s struggle was due to illness, not lack of a work ethic. He was right.
For nearly a decade, the Summers family tried to find out what was wrong with Talan. During that time Talan experienced dramatic weight losses and gains and intense recurring pain in his back that kept him from walking. He had raw skin and bleeding for four months that resembled shingles. Talan took part in NIH research and his family went to the Mayo Clinic, seeking answers but finding none. After years of searching, it was Talan’s mom who had proposed he might have a type of scleroderma, a suggestion later confirmed by doctors. “The disease actually turns your tissue from the inside out,” Jennifer Summers explained.6 Due to hardening of his lung tissue, Talan needs a constant flow of oxygen and requires extensive medical attention.7
As Talan fell victim to this rare disease, his family became enveloped in an insurance nightmare. When Talan was born prematurely, Stan had a minimal $500 out-of-pocket maximum deductible. After Stan reached the deductible, the rest was covered: heart surgery, lung holes, trips in and out of the hospital. It’s how the system was supposed to work. Stan’s deductible slowly increased over time, but it was still manageable. Just before Obamacare went into effect, Stan’s insurance cost him $240 with a $1,000 out-of-pocket maximum. But everything would change in the post-Obamacare world.
Stan received coverage through the Box Elder County Commission, where he served as a part-time commissioner. Even though he was not on an Obamacare exchange plan, the new law caused Stan’s health care costs to skyrocket. Stan’s deductible initially soared to a $5,000 out-of-pocket maximum and then to $7,500 before hitting a whopping $9,000 in 2017. “I’ve been married twenty-nine years, and I’ve met my out-of-pocket maximum deductible twenty-six out of the twenty-nine years,” Stan recalled. That meant that Stan had to pay a full $9,000 before his health care coverage would even kick in!
An almost double-digit deductible is a devastating blow to the hardworking school bus driver and part-time commissioner. In 2016 alone, Stan spent $35,000 on health care—the equivalent of some people’s salaries. On top of high deductibles, Stan deals with drugs that are not covered, out-of-network doctor costs for Talan’s rare disease, and an 80/20 health care coverage scenario after paying thousands of dollars in his deductible.
In addition to high costs, Stan’s benefits declined, causing Talan to lose access to vital medicines. “I have something in my fridge that cost me nine hundred bucks,” Stan told me in disbelief. His insurance would not cover “compounding,” when two separate drugs are mixed together at a pharmacy. His previous insurance had covered this, but not in the new post-Obamacare landscape. “I’m still driving [a] school bus because I can’t quit because of my health premiums,” Stan said.8
Even more problematic, Talan’s severe pain can only be treated by an investigational medicine that comes in the form of breath spray. Because Talan’s stomach and esophagus were sclerosing, or hardening, at such a rate, breath spray and injections were the only option, because pills could not deliver the benefit of the opioids. “Again, here comes the non-Affordable Care Act, saying that those could only be given out to people with cancer or somebody who was dying,” Stan rightfully complained. Without insurance coverage, Stan could not afford the $11,000 medicine. “As soon as they took him off of those almost two years ago, he’s basically been down in a spiral,” Stan lamented. “The only time I can get him out of the house is maybe for a doctor’s appointment, and that’s very seldom.” Although Talan uses a fentanyl patch and has an internal pain pump, neither offers him the pain management that the breath spray did. With his hands tied by Obamacare, one doctor told Stan, “I would have had Talan on investigational medicine six months ago, but because of Obamacare requirements, I can’t without Talan failing a bunch of tests.”9
On another occasion, Talan entered hospice care because his lungs were functioning at only 55 percent. When Talan started to recover slightly, he was kicked off hospice care because of onerous limitations on those eligible for care.10 It took Stan a full two months to get Talan on palliative care, a step in between hospice care and pain management.
The pain of the Summers family did not go unnoticed by the Trump administration, which invited Stan and his family to the White House after learning about their situation from Utah senator Orrin Hatch. “I’m a dairy farmer’s son from east Tremonton, Utah, in northern Box Elder County, and my hometown had one thousand people in it. We milked two-hundred-plus cows, morning, noon, and night,” Stan told me. “And here I am at the table with the President, Vice President, secretary of commerce, and secretary of health and human services . . . I was so enamored being there.” The president went around the table, listening to each and every person’s story. Stan was the last to go. “I mean everything’s been said, you know? I didn’t even go in there with any talking points,” he said, recounting that nerve-racking moment. But Stan, being a religious man, knew that God would give him the right words.
Given the Summers family’s experience, perhaps it should come as no surprise that Stan hesitated to even call Obamacare by name. “I’m not going to call it the other word,” Stan said, looking straight at President Trump, frustrated by a title that suggested Obama cared. “I call it the last president’s health care bill. I don’t need to say the name.”11 In his typical lighthearted manner, Trump joked back, “Other than that, you like him a lot?” Taking a more serious tone, Stan remembers the president saying, “I’ve been telling all these people to let Obamacare crash, but I look at you guys, and I look at your stories. What’s going to happen if we let it crash? Is it going to take two years, three years, four years, for everything to come around? Is it going to be instantaneous? I’m not willing to let that happen because of people like you.”
I asked Stan what he thought of the president’s response. “I’ve met senators and congressmen . . . and there are a lot of them that are inside themselves and obsessed and power-driven,” Stan observed. “When I got out of that, I was so amazed at how humble [Trump was] . . . [H]e hung on every word . . . He remembered everything that everybody was saying.” Stan’s recognition of President Trump’s sincerity was similar to Sabine Durden’s experience: Trump was the man who sent her a note celebrating the day a portion of a trail at Hidden Springs Park was dedicated to her lost son Dominic. There was nothing in it for him. The cameras weren’t there. He did it from his heart.
After the private meeting between Trump and the Obamacare victims, Trump said to his chief of staff, Reince Priebus, “How are we on time?”
Priebus gave him two thumbs-up, and the president asked the men and women before him, “You guys want to go jump across the hall and take some pictures in the Oval Office?”
A young girl from Georgia sitting next to him exclaimed, “Oh, yes, Mr. President, would that be OK?”
The president grabbed her hand in a show of sincerity and said, “Sweetheart, this isn’t my house. This is your house.”
Stan was equally impressed with Vice President Mike Pence. Upon arriving at the White House, Stan had given the president and vice president a copy of a poem he had written for his two kids called “I Have a Secret.” When Stan stood up to go take pictures, the vice president grabbed Stan’s arm and said, “Commissioner, you get it, don’t you?” The vice president had already read those beautiful words on the pages of Stan’s book:
My secret I tell you nightly before our prayers
as I ask Father-in-Heaven to keep us safe down here . . .
Take our hand—we’ll guide you through,
Only God knows what’s in store for you.12
“Yeah, I do get it. This might be our last best hope,” Stan told Vice President Pence.
After the event ended, friends asked Stan, “What did you say? What did you say?”—hoping to learn all about his day with the president.
“To tell you the truth, I can’t remember,” Stan answered. “We’re going to have to watch it together. I was letting my emotions and the things that I’ve gone through speak for me and for everybody else that doesn’t have a voice and doesn’t have that opportunity.”
The Trump administration continues the arduous task of delivering an Obamacare replacement plan that all Republicans can agree on. Although repeal and replacement stalled in the Senate in the summer of 2017, Republicans work tirelessly to find middle ground and deliver on their promise to the American people. Stan, in the meantime, remains optimistic—optimistic that his son will gain access to the medicine he needs, optimistic that his health care costs will go down, and optimistic they will soon resume their health battle without having to battle over insurance as well.
Melissa’s Story
“Where’s the money going to come from?” It’s a question Rich and Melissa Ackison found themselves asking all too often in 2016. Melissa’s 401(k) was empty. Her credit was decimated. The family sold the RV, their middle son’s ATV, and the dirt bike belonging to their oldest son—the same son who was about to put on the uniform of this great country and go off into battle. “At one point we were actually rolling quarters in our living room to buy our [youngest] son’s prescriptions,” Melissa, a mother of four, recalled.13
Medical hardship accompanied financial hardship for the Ackison family. Melissa was born with fibrous dysplasia, one of the rarest bone diseases. Scar-like tissue forms in place of normal bone, causing severe pain, swelling, and bone deformity, requiring continuous medical attention.14 In addition to Melissa’s own medical troubles, Royce, one of her four children, also had a preexisting condition called strabismus, in which his eyes would not always look in the same direction. It required him to have surgery at the age of four and requires follow-up treatments and surgeries down the road. In addition to strabismus, Royce also had a minor birth defect, causing fine motor delay. While he did not have a learning disability, he did need occupational therapy, which he received at the Nationwide Children’s Hospital. The therapy helped him to thrive in his elementary school environment.
One day Melissa drove her son to the hospital for therapy as she routinely did, only to receive disturbing news. “Melissa, none of these appointments are being covered by your insurance,” the staff member regretfully informed her. “No, this is Obamacare,” Melissa protested. “We get to keep our providers.” She was simply reiterating the promise President Obama had made to the American people many times over.
Melissa had just enrolled in a UnitedHealthcare (UHC) plan through her state Obamacare exchange in Ohio. After her Obama co-op, InHealth, went bankrupt, she was forced to reenter the marketplace and reinsure her family. Co-ops are nonprofit plans created under Obamacare and subsidized by federal loans. In short, they were an unmitigated disaster working right before Melissa’s very eyes. As of December 2016, just four co-ops remained in all fifty states, costing taxpayers upwards of $2.2 billion.15 The Ackison family fell victim to a bankrupt co-op, and they paid a heavy price.
Before InHealth went bankrupt, the co-op stopped paying Melissa’s bills without alerting her. Melissa only learned that InHealth had stopped paying many months after the fact when her doctors, not her insurer, brought it to her attention. When she approached the co-op to find out what was going on, InHealth claimed that Melissa had not submitted a “Creditable Letter of Coverage”—a document that the co-op had never asked for during the enrollment process. In fact, InHealth representatives had told Melissa that her application looked good and would be approved during the enrollment period. She even received an approval email.
A few days later Melissa learned that the missing document was not the problem. InHealth was not reimbursing her providers because they had listed themselves as Melissa’s secondary provider, noting that Medicare was her first. Medicare? Melissa was not even eligible for Medicare! InHealth had mistakenly listed Medicare as Melissa’s primary coverage, even though Melissa had never mentioned the government-run program. Since several of the outstanding bills were more than sixty days old, they were referred to a collections agency. In all, Melissa had eighty-seven outstanding claims, and her credit was quickly declining through no fault of her own.
When InHealth went bankrupt, Melissa enrolled in UHC, a new Obamacare exchange plan, which proved no better than the bankrupt co-op. Even though Melissa routinely paid her premiums, she was informed that Royce would not have access to care. She received several letters stating that UHC needed proof of citizenship, proof that Melissa had overnighted on three separate occasions. When Melissa called an Obamacare representative to find out the problem, the lady curtly replied, “Ma’am, you did not send his driver’s license to us. Yes, you sent yours. Yes, you sent your husband’s. You did not send his.” Confounded, Melissa replied, “Ma’am, six-year-olds don’t drive.”
In addition to enrollment complications, the new UHC plan would not cover Royce’s follow-up surgery at Nationwide Children’s Hospital for his preexisting condition. “His doctor is a world-renowned ophthalmologist who did surgery on me over thirty years ago,” Melissa explained, but her Obamacare coverage would not cover it. UHC also would not cover Royce’s occupational therapy at Nationwide Children’s Hospital. He had been on a six-month waiting list for the hospital and was finally being treated effectively, but Melissa was left with a choice: pay out of pocket or her son would lose access to care. “The whole ‘You get to keep your plan, you get to keep your provider’ Obamacare promises didn’t happen,” she told me.
When Melissa called a representative and explained that her son needed this therapy, they replied, “We’re sorry, but Nationwide Children’s occupational therapy clinic won’t participate in our program.” Melissa explained that this was her only option for therapy. Besides, it was a well-known children’s hospital. How could it not be covered? UHC and the Obamacare marketplace both assured her that they would send a list of providers to meet her son’s needs, but instead of receiving the names of occupational therapists, Melissa received the names of pediatricians, who just referred her back to Nationwide Children’s Hospital. It was a vicious circle with no solution, and there were no alternate occupational therapists in Union County, Ohio, or in the surrounding area.
The marketplace and UHC both continued to give Melissa the runaround, encouraging her to write appeals that never solved the situation. It was time-consuming and it was frustrating, prompting Melissa to finally call the marketplace and say, “You lied to me.” Melissa continued to pay out of pocket until she finally had to stop therapy for her son altogether. Eventually, Memorial Health opened, allowing her son to seek care, but the quality level is “no comparison,” in Melissa’s words.
In November, Royce had a new ailment: constant fevers. Every Monday, Melissa would take Royce to a pediatrician, who would provide fever reducers that had little effect. One night his fever reached 105 degrees. Melissa took him to the doctor, who said he must go to the children’s hospital immediately. She explained the problems with their insurance, and the doctor simply replied, “We’re beyond that at this point.”
After paying out of pocket for her son’s treatment, Melissa soon discovered that UHC would not cover his prescriptions, either. Melissa was paying her monthly payment on time, but the Obamacare system had matched her information to the wrong Social Security number, therefore disrupting her coverage. Beyond the incompetent mismatching, they also lost her personal information, which became compromised, forcing the Ackison family to enroll in LifeLock. “You name an issue that came from Obamacare, we had it,” Melissa remarked.
In addition to Royce’s insurance problems, Melissa incurred problems of her own. Melissa’s youngest son, Cross, was considered a high-risk pregnancy because of Melissa’s age. As a result, Melissa needed ultrasounds that she cleared with insurance and scheduled months in advance. Upon arrival at the appointment, she once was told, “We’re sorry, but we’ve stopped participating in the Obamacare plans.” Melissa countered, “But you’re the only hospital with the type of equipment that’s going to do this test. I’m not going anywhere without it today. You can put it on my credit, charge me for it . . . but I’m not going anywhere.” After her son was born via C-section, Melissa had a stroke within twenty-four hours of leaving the hospital. Melissa was rushed to ICU for treatment—more treatment that would not be covered, since it was not an “emergency service.”16
Melissa incurred insurance problems as well in treating her rare bone disease. She had been in clinical trials for fibrous dysplasia since she was fourteen years old and had seen the same doctor since she was a kid. Because fibrous dysplasia is so rare, few specialize in treating it, and access to Melissa’s childhood doctor was essential. Melissa had undergone nineteen surgeries over her lifetime in controlling the disease. On the left side of her face, her eye socket was removed and her cheek was hollowed out as a result of tumor growth. The surgeries created a large amount of scar tissue, requiring routine maintenance surgery.
In December of 2016, Melissa scheduled a surgery to clean out scar tissue. It was important to have it done in December so that the surgery would be fully covered before the deductible was renewed in January. Two days before surgery, Melissa’s surgeon called and apologetically informed her, “We have a problem. Your Obamacare insurance is denying your surgery.” Melissa felt that she was losing her mind. In that moment she realized that coverage for a preexisting condition is only as good as your access to specialist doctors. While many rightfully support protections for those with preexisting conditions like Melissa’s, these protections are meaningless when you are unable to access needed care.
Forgetting about her own problem for a moment, Melissa rushed to the pediatrician to take Royce in for a follow-up after his fevers finally subsided and to get her newborn, Cross, immunized. When she arrived at the pediatrician, they informed her that Cross’s insurance had been canceled. Her only option was to pay out of pocket the shocking amount of $947. “It’s right around Christmastime. I’m broke. I don’t have the money. He needs to have his shots, though,” Melissa pleaded with her doctor. “My son just got out of Infectious Disease.”
For two hours Melissa sat in the office calling Obamacare and UHC, all the while telling the doctor, “You know I have insurance. You just treated Royce!” The doctor knew she had insurance but couldn’t process it without the Obamacare system resolving the problem. The nurse, the doctor, and Melissa passed the phone around, taking turns talking to Obamacare and UHC. Each entity referred the callers back to the other. “Bottom line, we didn’t get his immunization. We went to the health department,” Melissa said. “I think Royce only had three Christmas gifts that year because we didn’t have the money.” The insurance that the Ackisons paid for on time and in full was useless.
Left with no choice, Melissa called her senator, Rob Portman. She detailed her experience to his staff, and they assured her, “We’re going to get this resolved.” Miraculously, within twenty-four hours, her surgery was approved. “Isn’t it interesting the way that works?” Melissa mused. Everything should have been covered: Melissa’s surgery, the immunization, everything. After Portman got involved, UHC tried to blame Melissa, claiming they didn’t have the prior authorization. The excuse was bogus, since Melissa had copies of the authorization right in front of her.
In all, Melissa calculated that her family paid $40,000 in out-of-pocket medical expenses in 2016. “I’m trying to run a family business. I’m taking care of little kids, living on a farm. I have cows and chickens, and I would be inside on the phone all day long trying to navigate through systems,” she recounted. This was despite being fully covered under Obamacare. In addition to draining her 401(k), Melissa’s credit was ruined. Although failure to pay medical bills was a result of an Obamacare plan going bankrupt and government incompetence in the enrollment process, Melissa—not the federal government—suffered the consequences. “How much do you think collectors are going to listen to me when I say things like ‘I’m sorry, we have Obamacare. Now, that bill wasn’t covered, but they’re working this out’?” Melissa asked. To make matters worse, the government has not reimbursed Melissa for one dime of her out-of-pocket costs.
Melissa’s insurance plan changed for a third time when she enrolled in the 2017 marketplace. Despite being a business owner with a net worth that made health care affordable for her, she was told that she was eligible for Medicaid, since its criteria is based on income only. Melissa explained that “2016 was our only bad year . . . We shouldn’t be on Medicaid at all”—she did not need or even want Medicaid—but it was her only viable option. “We come from a long line of military service members, who worked hard for everything,” Melissa said. “My grandparents were coal miners and lived in the coal camps of West Virginia until they could leave to go to the military to make a life for themselves. We come from a long line of very hardworking people. I know the difference between right and wrong.” Melissa felt that taking Medicaid was wrong, especially considering her total assets.
The only alternative to Medicaid was CareSource, the government-managed plan in the Obamacare exchange, offering high premiums and insufficient coverage. Melissa faced two bad options for her family, both essentially operated by the government. Eventually she accepted that Medicaid was her only real choice. When Melissa enrolled, the caseworker went further in offering her another government-subsidized handout: an electronic benefit transfer (EBT) card. “I’m pulling up in an S-Class Mercedes-Benz, presenting a welfare Medicaid program. This makes no sense!” Melissa exclaimed, noting that she turned down the EBT card offer. “We are not vulnerable, we are not unable to care for ourselves; we were simply business owners who had a poor year!”
Medicaid and Medicare were intended for people like Melissa’s grandparents, who were both diagnosed with dementia and did not have the means to afford health care. “Medicaid was not designed as a safety net to take care of individuals who are not working or choose not to work. That’s not what these programs were provided for,” Melissa explained. When Democrats talk about millions of Americans losing Medicaid, some of those recipients are individuals like Melissa who do not need Medicaid but are forced on it because there is no other affordable option for health care in the free market.
Although Medicaid works for Melissa, it comes at an immense cost to the taxpayer. “Medicaid is a better deal,” Melissa flatly admitted. “Who in their right mind would work hard to get off of this? We know better, because that’s how we were raised.” Melissa believes that pushing people onto Medicaid or a government-operated plan like CareSource is the ultimate goal of Obamacare, which slowly corrals millions of Americans into the hands of the federal government.
Through the stress and hardship, Melissa relied on faith. In the lead-up to the 2016 election, Melissa and her church met every Sunday at 10:30 a.m. to pray, specifically for the upcoming vote. “We knew that it was the last opportunity we had to turn things around,” she said. “And if you think I’m the only one like this, you can talk to all of the farmers, all of the people in the area, anybody who’s worked hard for anything: they have felt the exact same way.”
The night before the election, Melissa’s husband grew nervous about the prospect of a Hillary Clinton victory and the continuation of their Obamacare nightmare. Melissa looked at him and said with confidence, “There’s never been a time in our country where we have prayed collectively like we’re praying right now . . . There’s nothing more powerful than that.” I told her that I understood, because my whole church family was praying as well. I have no doubt that it made the difference. “Most people who don’t follow the teaching of Christ, they’re not going to understand it,” she said. “That is the only thing that helped us.”
Melissa’s prayers were answered in the form of a Trump victory. In July she was invited to the White House to share her story with Vice President Mike Pence. “It was humbling,” Melissa said. “It was almost as if you were sitting down with someone who you’ve known your entire life. He was gracious. He was kind. I believed that he cared.” With her husband beside her, Melissa described her situation to the vice president: “Guess whose 401k is empty now? My credit is ruined. At 39 years old, a business owner, I’ve worked for everything I’ve had. I wouldn’t be able to get a line of credit right now even if I tried. Where’s the money going to come from?”17
Rich and Melissa Ackison with Vice President Mike Pence. Courtesy of Melissa Ackison
In July, Melissa was invited to the White House again, this time to meet with President Trump amid a stalling Obamacare repeal-and-replace effort on Capitol Hill. A few days after the meeting, when asked what going to the White House was like, Melissa replied, “At this point, this is a job for me. I was honored to be a part of this, but I’ve been lobbying at Republican dinners, trying to get in front of my congressman . . . I was happy to meet Mr. Trump. I support his efforts . . . But at this point I wasn’t really overwhelmed with any of that. I’m more concerned with the legislature.”18 Melissa does have confidence in the Trump administration solving the health care dilemma, but she nevertheless remains frustrated with the Obama-era leaders in Washington who left her family in a perilous situation: “How do you vote for bailouts for large companies? Where’s my bailout? . . . I’ve got a son heading to the Middle East. He called us the night before we left to let us know it will be his first tour. We have raised our kids patriotic. We love our country. Why is this happening to us? Why?”19
Melissa and her family at the White House, visiting President Donald Trump. Courtesy of Melissa Ackison
My Story
Every summer I lie facedown on a cold, sterile, uninviting surface. Apprehensive and fearful, I am slightly pulled back into a confining tube, where a magnetic field pulsates around my body. A gentle tap, tap, tap begins, followed by a loud and obtrusive continuous thump.20 Radio waves dart into my body and contrast is shot into my veins through an intravenous tube, creating a cold sensation internally and a curious metallic taste. “Please try to stay as still as you possibly can,” the nurse’s voice blares through the speaker in my ear. As I attempt to lie motionless with my face buried in a cushion, I try my best to push out that one haunting question that has crept into my mind constantly over the last decade: Is today the day I will find out I have cancer?
The thirty-minute-long MRI procedure creates hundreds of pictures, showing my breasts in cross-sectional slices that my doctors at Moffitt Cancer Hospital search for any sign of potential malignancy. If my imaging is normal, I return in six months for a follow-up mammogram. But if it reveals new growth I am called back for further testing. In the intervening waiting period, fear can envelop you if you let it. Is it cancer? Will I have to have chemo? What about radiation? Could I lose my hair? What if I have the aggressive, fast-growing breast cancer and it’s too far gone? The line of questioning can ravage you.
For eight years, I have dealt with questions like these, trying to cabin them to the far corner of my thoughts. Until December 24, 2009, I was never really cognizant of health. Like most twenty-one-year-olds, I was far more concerned with boys, college, and job offers. But that all changed on Christmas Eve. Instead of waking to the joyous celebration of the impending holiday, I woke to a piercing, foreboding ring and a daunting, life-altering reality. Recognizing the area code but not the number, I answered with a lazy hello. The voice on the other end greeted me with the grim news: “Kayleigh, this is your doctor. We’re sorry to inform you that you’ve tested positive for the BRCA2 genetic mutation.”
An unexpected waterfall of tears poured down my face as I tried to comprehend the magnitude of the news: I had an 84 percent chance of getting breast cancer in my lifetime. Days earlier, my mom had undergone a mastectomy. Although she did not have breast cancer, she chose to remove her breast tissue as a preventive measure, since she too was BRCA2 positive and faced a frighteningly high chance of breast cancer. With eight extended relatives plagued by the disease, the choice to take proactive measures seemed like an obvious one for my mom. When I went to visit her in the hospital, she was sick and physically weak, but I recognized profound strength—a certain valor in her decision to take control of her future. I could look at my mom and say with near certainty that she would never die of breast cancer. But could I say the same for myself? No. The recognition of my mom eradicating a disease before it could ever plague her compelled me to get tested for the BRCA2 genetic mutation myself, on the very day of her surgery.
I had casually and somewhat cavalierly taken the BRCA2 genetic mutation test, not expecting to hear a positive result just days later and not prepared for the torrent of emotions that would accompany it. I knew that I was at risk for breast cancer, but now my fate seemed all but certain. I walked downstairs on that Christmas Eve, and my family immediately noticed my teary eyes. My mom and grandmother enveloped me with a supportive embrace, fully understanding my feelings in that moment, and my dad provided those sage words of comfort that I have passed along to so many others. “Kayleigh,” he said, “you know your weakness. We all have one in life—cancer, Alzheimer’s, heart disease, or some unknown weakness that creeps into our lives—but you know yours. You know your weakness, and you can attack it head-on.”
My tears began to subside as I realized that the BRCA2 genetic mutation, instead of being a curse, was really a blessing. It permitted me to take the offensive against breast cancer rather than being on the defensive. That didn’t mean there weren’t costs to accompany this new awareness. In fact, there were many. Like the time when I got my first mammogram at the age of twenty-two. It was a bewildering, frightening experience. Walking into the cancer hospital, I saw women with scarves on their heads, covering their bald scalps, and feeble patients shuffled around in wheelchairs by family members. Sitting in the waiting room in a light-blue gown, I was the youngest one there. Surrounded by all older women, I was the only girl.
In the mammogram room, a lead pad shield is Velcroed around your waist to protect the ovaries from radiation. A nurse squeezes and positions your breasts into a cold machine, beneath a clear panel that is pressed tightly down. She instructs you to remain as still as possible and hold your breath while X-ray beams shoot through your breasts in search of calcifications, early indications of cancer. After a dozen or so cycles of repositioning, motionless posing, and pictures, you are ushered back to a waiting room to see if you need further testing.
After that first mammogram, I took a seat by my mom, who was talking to another patient. “It’s my second battle with breast cancer,” she told us. “During my first fight, they took one of my breasts, but I wouldn’t let them take the other . . . And it came back.” Following a brief period of remission, she now sat before us with a scarf covering her head, undergoing rounds of chemotherapy. “You don’t have to worry,” she assured me. “You only worry when they come in and call you back for an ultrasound.”
Almost instantly, a nurse came in the door. “Kayleigh,” she called, looking down at her pad. “We’re going to need you to do an ultrasound.” Terrified and certain I had cancer, my eyes welled up.
“Can my mom come?” I nervously asked the nurse.
“No, she has to stay,” the nurse told me.
I went back to the ultrasound room and lay on a metal table as my mind flooded with thoughts of what chemotherapy would be like and how cancer would affect my postgraduate plans. Trying my best to hide my tears, I turned my head away from the nurse and continued to cry as she squirted gel on my right breast. Picking up a small, handheld wand, the nurse began rubbing the transducer along my skin in a circular motion. Sound waves pulsated beneath the wand and into the breast, creating an odd-looking black-and-white bumpy terrain on a small television screen. Turning my head to the right and peaking beyond the nurse’s arm, I saw the landscape shift as she moved the wand. Occasionally she stopped and placed marked dots on four sides of a circular-looking oval specimen. Was that the cancer? I wondered. Curious and frightened, I asked her, “Is everything OK?” She replied, “You’ll have to wait for the radiologist.”
Returning to the waiting room, I found my mom on the phone with my dad, worried that her oldest daughter might have cancer. The lady beside her had left, carrying on her battle against the ugly illness. After thirty minutes of fear and apprehension, I found out that everything was OK. I just had a spot that needed to be continually monitored for change. Constant monitoring for breast cancer and a revolving door of doctors and worry was my new reality.
My twenties have been a blessed decade, free from the ravages of cancer, but not from the prospect of it. There was the time when I found the lump in my breast during my first year of law school. The first year of law school (1L) is notoriously the most difficult one: fourteen-hour days of classes or studying, seven days a week. Although nearly every waking hour of my life that year was devoted to studying, that day I found the lump was entirely devoted to my health. After a worry-filled day of visits with the gynecologist and the radiologist, I was relieved that it was likely just a benign cyst or a hardened lump of fat.
Next was the haunting study I came across: “In carriers of BRCA 1/2 mutations any exposure to diagnostic radiation [i.e., mammography] before the age of 30 was associated with an increased risk of breast cancer . . .”21 Soon after this study was published, I had a mammogram. A worried radiologist came out after the test and expressed concerns about the procedure. He explained that this new study revealed a risk of accumulated radiation from mammograms in young women. The study confirmed a worrying dilemma: Could my mammograms actually be giving me cancer?
For years I debated the issue and urged doctors to allow me to continue with MRIs only, especially given that almost without fail the nurse conducting the mammogram would exclaim to me, “Wow, your breast tissue is so dense that we can barely see a thing!” Doctors urged me to stick with the current plan. Nowadays, many reputable medical entities do not recommend mammograms for BRCA patients until after age thirty. Yet I have had nearly a dozen throughout my twenties.
As I move forward, I face a permanent, fearful, and final step in my journey: a double mastectomy. Although I have had the first in a series of three surgeries, the second daunting surgery looms: the one where I must remove all of my breast tissue and accept my new self. The tissue that is removed will be replaced with silicone implants, making my appearance virtually unchanged from before, but the procedure is nevertheless frightening, since it cannot be reversed.
As I approach the age of thirty, my decision-making time has arrived. Thirty is the age at which my chances of breast cancer begin to rise significantly above that of the normal population, and it also happens to be the age that I will begin thinking about starting a family. Pregnancy is yet another consideration, since BRCA cancers are estrogen-fed, and during pregnancy a woman’s body is inundated with estrogen. Fortunately for me, as of November 2017, I have a new, loving, selfless, and supportive husband to join the incredibly encouraging and supportive family that I already have.
I also have the brave women who have come before me, like my mom, who had the courage to get a double mastectomy before it was popularized as a preventive measure. And strong women like Angelina Jolie, who openly announced her decision to have a mastectomy after learning she carried the BRCA1 mutation. My mom called me on May 14, 2013, and hurriedly urged, “You have to read the New York Times, Kayleigh! Angelina has BRCA just like us.” I opened my computer to find Jolie’s words. “I am writing about it now because I hope that other women can benefit from my experience. Cancer is still a word that strikes fear into people’s hearts . . . But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action,” she wrote.22 With confidence, she could now say what my mom was able to say to me several years earlier: “My chances of developing breast cancer have dropped from 87% to under 5%. I can tell my children that they don’t need to fear they will lose me to breast cancer.”23 Jolie’s bravery helped to bring BRCA1 and BRCA2 mutations into the mainstream, creating awareness for vulnerable women and bestowing acceptance on mutation carriers who previously felt alone.
As I move forward, I do so in the face of creeping fears but in the knowledge that Jesus Christ is guiding my path, wherever that may lead. I have a special heart for the three hundred thousand women in our country alone who are diagnosed with breast cancer each year.24 And I have a special empathy for a group of citizens who find themselves at the center of the American health care debate: the 52 million Americans with preexisting conditions.
As a BRCA2 mutation carrier, I am among the roughly one in four Americans who have a preexisting condition.25 Preexisting conditions come in a variety of forms: genetic mutations, actual cancer, lupus, obesity, and even pregnancy.26 But unlike millions of uninsured Americans, I am a high-risk patient blessed with continual health care coverage. For a BRCA patient, cancer can often feel like a when, not an if, and absent the ability to monitor with costly testing, haunting helplessness ensues.
I tell you my BRCA story in vivid detail for a reason, and the reason is this: there are two sides to the health care debate. Yes, Obamacare is beset with flaws: soaring double-digit premiums and one-third of U.S. counties offering just one insurance option in their exchanges. Yes, it should be repealed and replaced. But the Affordable Care Act had an important component that ought to be recognized: in theory, it protected individuals with preexisting conditions from being denied coverage or left with prohibitively expensive insurance options.
Or did it? Melissa Ackison’s story revealed a forgotten angle of the preexisting conditions coverage debate. Even though, under the letter of the Obamacare law, Melissa’s high-risk pregnancy and rare skin disease and her son’s strabismus and fine motor delay in theory amounted to four protected preexisting conditions, none of them were covered in practice. “The myth needs to be debunked as it relates to the general public thinking the words ‘pre-existing conditions’ are some form of protected class under the Obamacare programs,” Melissa wrote to me. “Our examples of pre-existing conditions are a clear example that the Obamacare insurance didn’t save us from anything and in fact made our situation worse.” She was spot-on, and it is a point that I had never truly considered until I listened to both sides of the health care debate.
One of the several reasons I supported candidate Donald Trump throughout the 2016 primaries and beyond was his willingness to observe the realities of health care and cross party lines when necessary. Although Trump recognized the need to repeal Obamacare, he also acknowledged that patients with preexisting conditions must be protected. Obamacare had to go, but protections for these vulnerable patients must not. “I would absolutely get rid of Obamacare,” Trump so often said. “[But] I want to keep pre-existing conditions. It’s the modern age, and I think we have to have it.”
In addition to protecting this group of patients, Trump vowed to fight for all Americans to have access to health care. When asked on a Republican debate stage whether he espoused views similar to Bernie Sanders’s on health care, since he had previously said everyone has got to be covered, Trump replied, “I don’t think I am. I think I’m closer to common sense.”27 He went on to say Obamacare must be repealed but that “there were will be a certain number of people that will be on the street dying, and as a Republican I don’t want that to happen. We’re going to take care of people that are dying on the street.”28 Trump’s mix of free-market principles and compassion was a winning combination, and one that must be implemented in practice through a Republican-passed health care plan that ensures those with preexisting conditions retain coverage but that simultaneously lowers costs for everyone else.
Throughout 2016, Republicans proposed a variety of plans to repeal and replace Obamacare. Along with each proposal came media accusations that Republicans were rolling back protections for those with preexisting conditions. But Republican efforts from the so-called Skinny Repeal to Graham-Cassidy’s state-centric model did nothing of the sort. Like Obamacare, Republican plans barred insurers from rejecting customers due to preexisting conditions. Some of the Republican plans, however, altered Obamacare’s blanket mandate that insurance plans cost the same for those with preexisting conditions as those without—a regulation that has helped cause premiums nationwide to skyrocket by $3,000 on average. These Republican proposals allowed states to opt out of this regulation if and only if they have another, working means of providing affordable coverage to those with preexisting conditions. In other words, the states were empowered to find localized solutions to a failed Obamacare regulation. By the letter of the law, those with preexisting conditions were protected—a nuance lost upon much of the media.
Ultimately, a solution to American health care will take bipartisan recognition of the valid concerns on both sides of the aisle. While Trump acknowledged the real concern of Americans losing coverage, few on the left have recognized the horrors of Obamacare: mothers like Melissa who are just trying to afford health care for her family, and fathers like Stan whose son cannot access drugs vital to his well-being. These Americans are real. Conveniently ignoring those plagued by the policies you purvey, whether Democrat or Republican, only takes us further from the answer. We must listen to one another. The stakes are simply too high.