This Is Us: How My Family Navigates the Health Insurance System
By Mackenzie Myers
$513,512
That’s how much money Aetna, my family’s insurance company, was billed between January and October 2019. Aetna did not pay that total amount because they have prior agreements with our health providers. However, that’s how much it costs to keep our family alive and well.
Our cheapest billed amount for the entire year was $35 for my mom to get her iron levels checked. The most expensive and most recurring bill is the daily $1,112.70 that it costs to do peritoneal dialysis. Peritoneal dialysis is the kidney cleansing program my Dad — we call him “Muskie” — does at home. That rounds up to about $406,135.50 for the entire year, which doesn’t include the extra monthly bills for the supplies needed.
I’ve decided to do an investigation into my personal life because African Americans are three times more likely than the Caucasian population to develop some sort of kidney disease. My dad is one of those unfortunate people. With the 2020 election around the corner and our healthcare system in shambles, I need more than ever for people to hear this story and think twice when voting on our healthcare policies. If not for people like my father but yourself. The average person is one medical bill away from bankruptcy or death.
My brother’s medical bills for the 2019 fiscal year were the cheapest. Only $490 was billed this year, which were for his annual checkups. However, we are all on some type of daily medication, which didn’t show up on our reports. My mother’s employer encourages their employees to use Express Scripts. It helps to lower the cost and you can usually get a longer supply. Express Scripts will always give you the generic prescription unless written otherwise. Some of my Dad’s medication still must come directly from the pharmacy.
“I worry about what type of insurance we’ll have in the future. I hope that my employer continues to provide good health care,” Mom says.
According to the University of Virginia health website, anti-rejection medications can cost up to $1,800 a month. Prices do vary depending on the dosage, brand, and the amount you’re receiving. However, either way, this is an expensive drug. You also must take immunosuppressants to suppress your immune system to help prevent rejection of the new kidney. These again vary in price. The National Medical Library says the average is between $10,000 to $14,000 a year.
Nicholas Castle, a public health professor at West Virginia University, teaches a class on healthcare costs and why they’ve become so expensive. According to Castle, some of the reasons are third party payment, growth of technology, and the increase in the elderly population.
Castle says that millions of people are filing for bankruptcy due to medical bills. Ten percent of patients are making up for 70 percent of all health care costs. Those people in the 10 percent have one or more chronic diseases. Being in renal failure and having diabetes would put you into this category. That being said, my family reflects the same issues thousands of other people are facing as well. However, we still are luckier than many since we have insurance that covers almost everything.
Dr. Matthew Weir is the director of the division of nephrology at the University of Maryland Hospital. He gave my Aunt Shelia — nicknamed “Lucky” — a kidney transplant. Now he’s been treating her brother — my dad — for almost a decade. And Muskie is glad about it.
“The rapport with the previous doctors wasn’t very good,” Muskie said. “Dr. Weir and I really connected, and he has great bedside manner.”
Muskie and Dr. Weir have developed a quirky relationship.
I asked Dr. Weir if he gets angry when patients can’t afford medicines that keep them alive. His answer was direct: “We do not let that happen.”
Dr. Weir says my Dad was on 10 various medications after receiving the transplant. We’ve never had to pick and choose between which medications we can afford, but Travis, a pharmacy intern at West Virginia University, has seen it plenty of times while working.
For our smaller bills, we use our flexible spending card. Before each year when the insurance resets my Mom estimates out how much money to put towards our flexible spending. Since we now have more medical bills were hitting our deductible in the first half of the year.
When fully functioning, the kidneys work full time to balance fluid and salt in the body and remove toxins. They also manage minerals in the bloodstream, create hormones that produce red blood cells, promote bone health, and regulate blood pressure. Dialysis imitates this function by removing toxins and balancing off fluids in the body.
Between treatments, due to zero kidney function, your body hoards fluid. Fluid overload could cause heart-related death and complications. Daily treatments help to reduce symptoms and risk of complications. But daily dialysis comes with its own set of side effects and risks of infections.
There are positives and negatives to switching to at-home dialysis, but overall my Dad has a new lease on life. Rose Zeinoun, my dad’s peritoneal dialysis nurse, trained him on how to use the NxStage machine. She’s been working with patients for the last eight years and has been a part of my Dad’s team since August 2018. She trained him on how to do continuous ambulatory/automated dialysis, how to prep and dispose of medical waste, and everything in-between. Patients are taught two types of dialysis in case of a power outage or other complications.
Rose believes that home dialysis is more convenient for patients and better prepares the body for future transplants.
Initially, the costs that come with switching to this type of dialysis are high. You must have surgery to place the catheter into your stomach which then plugs into the machine. As well as a removal surgery of your hemodialysis port, since until you’re approved you still have to be on that dialysis system. Other bills include supplies, training costs, and delivery services to your home or vacation spot. Each patient is required to have a backup supply which you use in case of emergencies and may never be used.
“I’ve never used my backup supply because I receive shipments every other week… it’s just disposed of once it expires,” Dad says.
Since 2004, my Dad’s been self-employed doing home improvement projects. This job is very labor heavy and he rarely has any help. Not because people aren’t willing to help out but because my Dad won’t ask for help even if he’s in need. Home dialysis is more convenient for him since it doesn’t cut into his work time. It’s annoying to him to have to bring all the extra supplies when going on vacations but that’s the price he pays to feel better.
On March 23, 2010, President Obama signed the Affordable Care Act into law. We didn’t know when we watched him get sworn into office his actions would personally affect our family. This law protects people like us who all have pre-existing conditions. It also requires insurers to have annual maximum out-of-pocket expenses, ours being $5,000. Before we had Aetna we had an HMO that covered 100 percent of all of our medical bills and my mom never had to manage our account. The insurance paid for the transplant surgery and the donor surgery which costs over $400,000. A few months after receiving his first transplant surgery my mothers’ employer switched medical providers. Which is when my mom started to get worried about how we would pay for the post-op medical expenses.
I asked my mom what we would do if this law wasn’t in place or if they decided to change it.
“I — I don’t know what we would do, we would have to put Dad on Medicare and we would probably be bankrupted like most families,” she said.
My parents would die before they begged for money from strangers, and I’m positive they would try and pay it back if they did take it.
They’ve pushed themselves to the breaking point time and time again to make ends meet. However, in the past, there have been plenty of times I’ve come home to my Dad sleeping and not being at work. Or my Mom pushing herself to work until her hernia almost caused permanent damage.
He was/ is often too sick from the side effects of end-stage renal failure to go do his labor heavy job. If he’s at work, I doubt his clients ever know of his circumstances unless he ends up in the hospital. This has happened a good number of times in the past decade.
“It’s just what I do,” he said.
Nine years ago in December 2010, my Dad was hospitalized for a week and a half. During this time we found out that he was on the decline much faster than his doctors thought. My Aunt Lucky was one of the first people at the hospital.
After the holidays my parents, my Aunt Deb, Uncle Doug — “Chop” — my godparents, and my Aunt Lucky headed to the University of Maryland to get tested. Aunt Lucky and Uncle Chop was the most ideal candidates. My mom could have given my Dad a kidney but it didn’t seem practical. It took several months to get the results back. In the meantime, my Dad was going to a dialysis treatment center three times a week.
On July 7, 2011, my Aunt selflessly saved my father’s life.
“I don’t see myself as a hero,” she said. “I don’t feel like that. I just feel like my baby brother needed something and I could help him with it.”
Three years later as far as anyone knew Muskie was doing well and his kidney was fully functioning. What we didn’t know is that my Dad had started feeling the beginning stages of renal failure once again. 2014 is when things started to head downhill in all areas of our life. Not only was my Dad struggling with the loss of his eldest sister Donna, but he was facing the reality that his kidney wasn’t going to be lasting as long as we all hoped. I never knew until I started this project the full scale of things that were happening in front of my own eyes. I finally got to ask questions about things I’ve been wondering for almost a decade.
What I know now is that my Aunt Lucky’s kidney never functioned above 48 percent. She was a 6/6 match and even the doctors didn’t know until they did tests years later. My Dad held on for as long as he could and almost held on for too long. In January of 2018, he was again in renal failure but wanted to make it to my brother’s graduation in June and to keep a sense of normalcy for us all.
Father’s Day 2018 my family and I spent the day at the University of Maryland Medical Center. Comforting Muskie as we start this long hard journey again but this time not knowing what the future holds.
“I’m not okay with my health condition,” he said. “I’m not okay with it from the standpoint of I’m not in control — I can’t control it. I’ve never felt sorry for myself it’s just life and it’s something you have to deal with.”
Currently, my Dad and his team of doctors are working hard to keep him healthy and back on the transplant list. My parents are also looking into options to list him in multiple regions across the country. We’re not sure what the future holds with my father’s health but we can only hope for the best. God willing, one day he will receive the gift of life again.
Most importantly, I think my family and I finally found the words to explain how this situation has truly affected us. I don’t think we would have ever sat down and been vulnerable with each other if it hadn’t been for this project.
Not because we’re not close but because it’s easier to live in a constant state of denial. We self preserve to protect ourselves from the scary reality that we live every day and the frustration we have that we can’t change it.
