Challenges and Chances: Navigating the US Healthcare System with a Chronic Condition

“Do I have cancer? This thought had been on my mind for months. I could have received answers immediately, but my insurance kept denying the MRI necessary to rule out cancer. I am just one of many people fighting for their rights within the US healthcare system every single day.”

ABILITY Magazine speaks with four chronically ill people about their experiences navigating the system, the advocates supporting them to get the care that they need and deserve, and with experts who explain what we could do better in the United States.  

A woman with short brown hair sits in a kitchen. She is wearing a black hat, large earrings and a black shirt with white polka dots

Karina, 34, San Francisco

When I went for my latest doctor’s appointment with a gastroenterologist, I didn’t quite expect the consequences our 60-minute-talk would have on my life, or that I would spend the upcoming weeks on the phone, arguing with my insurance. I thought I was simply seeing a doctor who would help me manage my gastrointestinal symptoms that have been worsening since I was a child. Instead, our appointment turned out to become my biggest nightmare. I started by talking about my folder full of chronic health conditions, which are almost all related to a rare, genetic connective tissue disorder called Ehlers-Danlos syndrome (EDS). I was diagnosed with EDS in 2014, and over the following few years, I added a new condition to the list almost every month. Over the course of our conversation, the specialist became aware of a mutation in my genes that causes a condition which is associated with a significantly higher risk of developing pancreatic cancer – one of the deadliest cancers. 

After speaking to a pancreatic cancer expert, my doctor decided – carefully considering all my preexisting conditions, allergies and risk factors – to order a cancer screening via MRI. For two days, I was in shock. Then I learned that my insurance denied the test. The following weeks, I spent on the phone with my insurance, legal representation, patient advocacy organizations, and my doctors. I had to cancel my MRI appointment three times and live with the constant fear of having cancer at age 34. A routine test could have confirmed or ruled out issues with my pancreas, but since all expensive imaging needs prior authorization from my insurance, (and more often than not, they deny those referrals), I had to fight an insurance company that receives a large sum of money to fulfill my medical needs. Instead of the MRI, they wanted me to have cheaper diagnostic tests, which would have required several doctor’s office visits in times of rising numbers of COVID cases in my state. Some of these tests weren’t indicated for the suspected condition; others, I couldn’t have due to my complex medical history. Many attempts to explain my situation failed. For several weeks, I lay awake at night unable to get c-word out of my head. Then I’d wake up and summon what little energy I had contacting researchers and fighting my insurance.

I filed an expedited appeal, which got denied as well. Then, my doctor called my insurance for a peer-to-peer review, which, again, led to another denial. Meanwhile, I tried to find out whether I could pay the MRI out-of-pocket, as I have done many times with other treatments or appointments in the past. The test was estimated to be around 4000 Dollars, already including a 60 percent discount for self-pay patients. Under no circumstances could I afford this. I didn’t have a choice. I had to continue fighting and waiting.* 

Prior authorization and other barriers

Caitlin Donovan and her team at The Patient Advocate Foundation (PAF) help chronically ill people to access the care they need. “The PAF provides free case management and assistance programs for anyone with a diagnosed chronic condition. So today, anyone with diabetes, lupus, AIDS, or even COVID can get our help. Additionally, the National Patient Advocate Foundation advocates for patients and teaches them to advocate for themselves,” Caitlin, senior director of both organizations, says. Since its founding in 1996, the PAF has supported over 1.3 million people in the US with a staff of more than 200. Their biggest problem are the growing population of underinsured people, who, in theory, have insurance coverage, but in practice, it often doesn’t cover anything. “We help these people with anything from having trouble getting into a clinical trial, their insurance not covering enough, to them having gotten a huge medical bill. One of the biggest issues people call us for is transportation-related. The average amount our organization gets asked for is 22 dollars per way for gas. And that’s a very striking way of showing where the barriers are in this country because that’s less than a movie night,” Caitlin explains.

Caitlin, who calls herself “a bit of a nerd,” initially worked for a congressman and later for a lobbyist. As a liberal catholic, she met a nun, who argued that in order to be morally sound, a country needs to provide healthcare for all people. “I thought ‘I am going to work for her,’ and I did,” Caitlin says. She quit her job and worked for liberal nuns who were medical feminists. After, she was determined to continue helping people and decided to stay in the healthcare sector, bringing her to the PAF. “We all have an obligation to help one another, and the healthcare system in this country is the source of one of the greatest injustices and moral crises. It just keeps multiplying in so many different areas. It affects people’s housing, jobs, and nutrition. It affects everything,” she says.

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In 2019, the organization worked with 23,702 patients that needed personal assistance, of which a quarter reported to be disabled. According to Caitlin, every case manager makes an average of 22 phone calls to solve one single case. These managers are professionals – mostly people with a nursing or social work background. “If it takes them so many phone calls, it seems impossible for the average person to navigate the system effectively and efficiently,” Caitlin adds. 

Often, these cases revolve around issues of obtaining care, for example, getting the authorization for a diagnostic test, like in my case. I am in no way a rarity – to the contrary. According to a survey by the American Medical Association (AMA), in 2019, 86 percent of physicians in the US reported that the burden associated with prior authorization requests has increased over the last five years, and the whole process “often or always” led to delayed care for half of those patients. In a quarter of these cases, it has tremendous consequences for the patient. They might suffer serious adverse events. “Prior authorization was put in place to protect insurances from the enormous price problem we have in this country. But the problem is this works against the patients, who cannot get the care they need. We need to stop practices like that and rework the system to favor patients,” she says. One piece of advice the professional advocate gives to the people the PAF supports is that dealing with your insurance is a contract negotiation and should not be approached emotionally. “It’s deeply personal, but it is a contract, and therefore you need to use their language to support your case.” 

While my battle with insurance lingered on, I began to investigate how other people with disabilities or chronic conditions were being impacted by barriers to their healthcare; and many stories were much worse than my own. 

Steve, a man wearing a black hat and a blue 'Star Wars' facemark sits in a car.

Steve, 31, Minnesota

Steve was 12 years old when he developed severe diarrhea. When his mom brought him to his pediatrician, they ran dozens of tests and found out his liver enzymes were dangerously elevated. He was later diagnosed with primary sclerosing cholangitis (PSC), a chronic and progressive condition affecting the bile ducts of the liver. On top of it, he showed symptoms of ulcerative colitis, an inflammation of the large intestines. Only two years later, Steve’s liver was too damaged to function properly. While his friends enjoyed their first year in High School, Steve needed a liver transplant, or else he was going to die. “My disease progressed really quickly. I spent about six months on the transplant waiting list, and I was listed for both, pediatric and adult, as well as for half and whole liver. I was on the top of every list possible due to the severity of my condition,” Steve remembers. He received the life-saving organ on Christmas Eve 2003. However, he had no idea how serious his condition was until media picked up his story and used the headline: ‘Local boy went from near death to prosperous life.’ “I remember making a joke about that, and my parents where like, ‘Well….’ I totally get that because as a parent, how do you explain to your 13-year-old that things aren’t looking good for him?” Steve says. The following years after his transplantation, Steve lived a life between medical appointments, school and later university. He studied college administration and became ‘a professional sick person,’ as he calls himself – until he developed complications of his PSC again. “With the liver disease I have, what can happen is that the bile ducts are getting inflamed and bile doesn’t flow through the body. Then that infection spreads, causing sepsis. If it happens once, it’s okay, but in my case, it kept happening over and over again. And I was hospitalized several times,” Steve explains. 

His liver enzymes continuously rose to the point that he had to be re-listed for another liver transplant, and that’s when things got complicated. “It was one of those situations where you know you go through something big, and usually, you would say to your insurance company, ‘Hey, heads up, this is happening.’ I was still on my parents’ insurance, so I don’t know if I have a distorted view of it, but to me, it sounded like they just said, ‘Nope.’ And I responded, ‘What do you mean, no? I need this to live.’ And they were just like, ‘No, we don’t do second liver transplants,’” Steve recalls. As a consequence of the denial, Steve’s mother wrote a heartfelt letter, making a case why her son deserves a second transplant. The letter states: “A liver transplant is the only known cure for PSC and the doctors see no other option to provide Steven with a chance to have a normal life expectancy. If there was another option, we would certainly consider anything.” According to Steve’s mother, the insurance policy would have covered a second kidney or bone marrow transplantation, but only one liver. She continued to talk about Steve’s warm and caring personality and attached photos of him, as well as letters from his doctors, professors, and everyone that could possibly make a case for her son Steve. Meanwhile, his condition worsened, and he had to undergo a painful procedure called biliary drainage, where a tube is put in the main bile duct. “It would come out of my abdomen and drain into a bag that was strapped to my leg. I had that in for two separate 1.5-year episodes. It was a nightmare because I was going to college and then grad school, and every four or five weeks, I would have to go back into the hospital,” Steve says. 

While juggling university, chronic health issues, constant hospital visits, and painful treatments, at the same time, Steve and his family had to fight his insurance and fear for his life. “For a while it was both, arguing that I deserved a second transplant as a human, which is pretty sick in general, and then also convincing them that monetarily it makes way more sense to have this one surgery and not have to pay for all the other treatments. It’s disgusting that we even had to make the first case, let alone the capitalistic case afterwards,” Steve explains. For people outside the US, it is hard to imagine that a 23-year-old could be denied a life-saving surgery, but in the US, that’s not uncommon. “I thought I just have to deal with it until my life ends – until I die from it. In my brain, I conceptualized this almost like an endurance race that certainly had an end to it,” Steve states. 

He did not die. Steve received his second liver in 2014 after his mother switched jobs, which came with a new insurance, and they covered the expenses. Today, Steve is 31 years old and an advocate for other chronically ill people. “Why is anybody not deserving of healthcare in general? That’s something I really struggle with. I don’t understand how anyone can be okay with the fact that insurance companies are making money of such a vulnerable population,” Steve emphasizes. 

Listen to the interview with Steve about accessing healthcare for his liver condition on ABILITY Magazine’s podcast.


Limited access to healthcare

Despite living in a developed country with some of the top medical experts worldwide, many Americans die from a lack of access to proper healthcare because they cannot afford health insurance. According to a study by Families USA, a non-profit organization advocating for healthcare for all, more than 26,000 people in the US died during 2006 from a lack of health insurance. Being uninsured has been associated with a higher risk of death since the 80s, and even in 2018, nine percent of Americans still did not have health insurance, depending on the state they lived in. “At that time – before the ‘Affordable Care Act (ACA)’ – people did not have as much access to Medicaid as they do now,” Cheryl Fish-Parcham, Director of Access Initiatives at Families USA, says. “They also didn’t have access to private insurance coverage on the individual market that had decent benefits or was affordable. So there were many people who were uninsured and could not get care. Unfortunately, that’s again the case now. We are living through a pandemic that has caused many people to lose their jobs and with it their health insurance.”

The organization has just released another report on what they call ‘the greatest public health crisis of the century:’ the COVID-19 pandemic. Their study showed that 5.4 million people in the US lost their insurance due to unemployment since the start of the pandemic. “These people are not getting preventive care. They don’t have access to care until it becomes such an emergency, so there is not an easy intervention anymore. Generally, federal law requires that hospitals provide stabilizing care if the absence of immediate medical care would lead to permanent damage, but that’s a really high bar to pass. So you end up with people who have cancer, but it’s not life-threatening yet, or other serious conditions where they should have care but they are not getting it,” Cheryl explains. 20 percent of all adults in each one of eight states are uninsured right now. At the forefront are Texas and Florida, which both have seen one of the highest increases of daily new COVID cases and total case counts during this pandemic. Those numbers would be much worse if the ACA were to be removed. “Under the ACA, 20 million people gained coverage that didn’t have it before. Without the ACA, they would lose their insurance again, because Medicaid expansions in many states and the right to buy individual insurance with premium tax credits would end, as well as insurers could deny you based on whether you have preexisting conditions or not. Simply a lot of services would go away,” Cheryl states. Families USA follows policy development and talks about what consumers need in federal and state policy. They advocate for Americans to get the best possible healthcare protection. “We don’t have a public coverage system that’s universal, nor do we have a public health system that’s universal. So people here are struggling with high prices and are not guaranteed any type of coverage that helps them afford their care,” Cheryl adds. Right now, her organization tries to preserve the bits they have gained: coverage for 20 million people. “We don’t want that to go away, and then we want those protections to be built out, so that more people can gain coverage. And additionally, we need an equitable healthcare system that doesn’t discriminate against people based on disability, gender or race.”

Amy, a 45-year old woman from California, experienced this discrimination firsthand.

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Amy, 45, California

August 11, 2019: a day Amy will never forget. All of a sudden, she developed severe weakness in her legs, making it hard for her to walk properly. Additionally, she lost control over her bladder and was in excruciating pain. As a veterinarian, she immediately suspected cauda equina syndrome, a neurological complication due to a herniated disc in her lumbar spine, which is considered an acute emergency that requires immediate treatment. Her father drove her to the closest emergency room. Barely able to stand on her feet, Amy needed the support of two people to manage the long walk into the hospital. Once the doctor arrived, she confronted him with her suspicion of having cauda equina syndrome and requested an MRI, but was met with disbelief. The physician brushed her off and told her that she just had an exacerbation of her chronic back pain. “And then he wrote up this whole thing about that I had anxiety, which I hadn’t found out until I requested my medical record,” Amy says. She was discharged without any diagnostic testing. 

On August 13, she had an MRI, which Amy initiated and paid for herself. The MRI confirmed cauda equine syndrome. Amy was right. Over the following days, she sent many e-mails to her doctors to get a referral to a neurosurgeon, but none was able to see her. “My neurologic symptoms are continuing to worsen. When I presented to the ER, I had difficulty initiating urination. That symptom has worsened, and I have loss of urge to urinate. I also have not had a bowel movement in several days,” she wrote on August 15.

“Then, on the 16th, my symptoms got significantly worse. I couldn’t feel my feet because they were so numb. I had this ice-cold sensation of my legs. I got really worried,” Amy says. She went back to the ER and was immediately admitted to the hospital. Emergency surgery followed on August 17, a whole week after the onset of her neurological symptoms. “By the day I had surgery, it would take me half an hour to urinate. I had lost the sensory urge to urinate. It’s been ten months since I had surgery, and I still have difficulty urinating; I still have a weakness to my limbs and difficulty walking. I am 50 percent better than before, but I am still worse than the day I presented to the ER,” Amy explains. “I could have been normal if I would have had surgery within 24 hours. And it’s so sad how much the system is broken. Not only do you have the injustice of being denied the emergency care that you needed, but then you have these permanent symptoms you have to live with for the rest of your life,” she adds. 

Arghavan, a woman with long brown hair and a red Stanford hat at the beach smiling.
Arghavan Salles, MD, PhD

Gender bias in medicine

In Amy’s case, typical gender stereotypes might have played a role. Gender bias in medicine is a known phenomenon and often affects women. Studies have found that women stating health issues are generally taken less seriously than men, and often their physical symptoms are brushed off as being ‘all in their heads.’ “It’s well documented that when women experience pain, they are more likely to be labeled as having a psychiatric cause for the pain. Even the word hysterical is very much tied to sexism, and it’s only used for women,” Arghavan Salles, MD and PhD at Stanford, says. Salles is a surgeon, but additionally researches gender bias in medicine, as well as develops programs related to diversity and inclusion. Salles, like many female surgeons, has personal experience with gender bias in medicine. “When I was a mid-level resident, a female surgeon was concerned about a patient who was not doing well. She wasn’t screaming or anything; she was rightfully concerned. A male surgeon said, ‘You don’t have to get hysterical over it.’ The same guy also said to me when I was a second-year resident, ’I don’t know why we bother to train women to become surgeons because they just want to go off to have babies.’” Those comments did not have any consequences for the person who said these things, according to Salles. On top of this, she noticed differences how female doctors are treated compared to their male colleagues in terms of their attitude. “Male doctors are usually talented or skilled, but for women, words like pleasant or unpleasant were used – not smart, or she did the right thing.” When those biases are experienced as a patient, the consequences can be detrimental. One study found that women who present to the ER with abdominal pain are less likely to receive pain medication than men. Even worse, women with acute coronary syndrome – all conditions that lead to reduced blood flow in the heart – experienced large delays in access to proper care compared to men. This got more prevalent when those women were young and lived with preexisting conditions such as anxiety. “I think it’s important to know that this is not intentional. Most people are not consciously telling themselves that the woman patient is making things up. It’s part of the biases we take in from the world around us, which makes it harder to fight because if people don’t even know they are doing this, the behavior is harder to change,” Salles explains. 

Based on a literature review by Swedish researchers, the ‘typical’ man is usually presented as being stoic, tolerating and denying pain, whereas women are seen as sensitive to pain, hysterical, emotional, complaining, and, again, as if the pain is all in their head. Women also get prescribed more antidepressants. And these stereotypes can affect our performance and how we view ourselves. This phenomenon is called stereotype threat. “If you are a woman doing a math test and somebody asks your gender before the test that reminds you that women aren’t supposed to be good at math. And that simple reminder seems to be enough to worsen people’s performance. You are thinking about this stereotype that exists and how you are going to disprove it, and just having those thoughts on a subconscious level might take away from your working memory capacity and thereby lowering your actual performance,” Dr. Salles says. She explains further that it’s not only men who are biased. Any person is influenced by the people around them, the news sources they consume, shows they watch, and many other things. “We all have developed ways of taking in the massive amounts of information around us very quickly, putting people into categories to make sense of the world. That is how it happens.” 

Nevertheless, how can we change this, so female patients are treated as equals? “I think that we have a lot of different challenges. It’s important not to focus only on implicit bias. It’s definitely part of the problem, but there is still explicit bias, there is still actual sexism, there is racism. People are ableist. People still express consciously in addition to implicit bias,” Dr. Salles states. The researcher thinks it’s important to build more systems that bypass biases, much like a blind audition at an orchestra.

“Everybody wants to say that implicit bias training is the solution. And I am not here to say it’s bad, but we don’t have strong data supporting behavior change after implicit bias training. Sometimes people walk out of the training and feel even more empowered to be biased because they get the message that everyone is biased and so it’s okay. People want a quick solution, like with anything in life. Your sink is clogged, you want to have it fixed now. You don’t want to work on a clogged sink for the next six months. Unfortunately, in the realm of biases – explicit or implicit – there is no quick fix. It’s constant vigilance at any level. That’s the only way we get around it,” she adds. 

Barby, a woman with long brown hair leans against a blue wall. She is wearing a blue dress and smiles.

Barby, 47, Arizona

Barby is an advocate for people with chronic illnesses and lives with several herself: endometriosis, reflex sympathetic dystrophy, dystonia, and she is a breast cancer survivor. As a self-proclaimed ‘cheerleader of hope,’ she is dedicated to helping other people navigate the healthcare system. “I had to learn the hard way, and I wanted to be the light for someone else who struggles,” Barby says. As a strong voice in her community, she advocated for more transparency of healthcare pricing in the state of Arizona, which led to law HB2045 being put into place requiring hospitals and healthcare providers to reveal the prices for medical tests and treatments before the procedure. In theory, this sounds beneficial for all patients, but according to Barby, a part of this legislature was misinterpreted: the co-insurance payment. “Prior to this law, we saw lots of denied prior authorizations. That’s one way insurances would delay care so the patient would give up. Now, with this transparency law, it’s the providers who are blocking access to care. Because what we are seeing now is that the provider will say, ‘You need this procedure or medication, and you have to pay the 20 percent you are responsible for – the co-insurance – before we give you the care.’ In the past, they would give you the procedure you needed and then send you a bill that you could pay over time. Now, they say you have to pay the whole amount up front,” Barby explains. She has been experiencing the consequences of this interpretation firsthand for more than two years. 

Barby needs bladder surgery to treat incontinence, which has significantly altered her quality of life. “They said the surgery costs 30,000, so I owe 6000. Until I pay that, they won’t give me the surgery. You suffer – and in my case, pee your pants. It’s really a tough situation to be in. You can’t get the care you need. And you don’t have a choice. So people are giving up; people are at the end of their ropes,” Barby says. It already took her 18 months just to be able to pay the co-insurance for the diagnostic test needed before the surgery, and since then, she has tried everything to save the money for the actual operation – so far unsuccessfully. “As a patient, I had to realize that I am not going to be able to improve this area of my life until years down the line because I do not have the ability. And I have seen a deterioration in my health overall because of this,” Barby states. 

As a chronically ill person, the implemented law combined with the already substantial burden of the prior authorization process makes Barby worry about her future life. “When I had pneumonia, my doctor said, ‘Before you come to my office, I want you to stop at the imaging center and get an x-ray.’ So I went up to the counter, and the lady said it is 36 dollars I need to pay before the x-ray. I literally had pneumonia and trouble breathing and did not know what was wrong, and they had to charge me upfront. What if this was life-threatening, and I just cannot come up with the money?” she explains. 

Healthcare costs and systems

Despite having a decent insurance plan, many people can barely afford their co-insurance. Paying 20 percent of a test or treatment that costs several thousand dollars can lead to a life full of medical debt, not even considering people who are uninsured and have to pay the whole amount out-of-pocket, causing bankruptcy. In 2007, one study found that the cause for more than 60 percent of bankruptcies in the US was medical debt. Continuously, studies have shown the US has by far the most expensive healthcare in the world. A liver transplant, for example, as Steve needed twice in the past, costs 62 percent more compared to other developed countries. A report by the International Federation of Health Plans (IFHP) found that medical costs – whether for surgery, medication, imaging, or hospital stays – are almost always the highest in the US. An MRI, for instance, costs an average of 1430 Dollars in the US, while it is only 190 Dollars in Holland. 

“It’s often said things are just more expensive in America. But actually, that’s not true. It is more likely that there is less competition in the system in America. Certainly, there is no competition in free health services, like in the UK and New Zealand,” Christopher Watney, CEO of the IFHP, says. The IFHP is an industry body that represents health insurance companies around the world and helps them to create networks. Together, they work on the big issues that affect all health insurance businesses around the world, largely driven by challenges in delivering healthcare. 

According to Watney, a contributing factor to the high healthcare prices in the US is an inefficient regulation due to the system being so fragmented and large. In New Zealand, for example, drug prices are regulated by a government entity called PHARMAC. “PHARMAC is given the amount of money the government wants to spend on drugs; they are the only organization pharmaceutical companies can negotiate with, and they are extremely good at negotiating,” Watney explains. Such an entity does not exist in the US. Adalimumab (Humira), a medication commonly used to treat autoimmune conditions such as rheumatoid arthritis or Crohn’s disease, costs 4480 Dollars in the US, while affected people can get it for 740 Dollars in South Africa, or 1570 Dollars in Germany. 

“And then there is a huge amount of administrative waste in the US, because of all the different systems which require a variety of people to manage those without standardized health records. If I can’t find the results for the MRI scan, I am not going digging for them. Let’s just do another one, right? This happens all the time to the point where up to a third of all healthcare costs in America – and to be fair, in most parts of the world – are wasted,” Watney states. “Fundamentally, America is the land of the free market. And when it comes to healthcare, that’s the same philosophy. However, there is no real good reason for America having such disproportionally high healthcare costs. You can explain it, but it is very hard to justify.”

Prices for the same procedure can vary widely, depending on the hospital and state, and without any regulation, every institution can decide how much they charge. While the average cost of an MRI in US is 1430, mine, which was performed at one of the elite hospitals in the US was priced at 14,000 dollars. “It really comes down to what the market will bear. You price up to the point when the supply doesn’t meet the demand anymore. In America, particularly in terms of health, there are many things that are world-leading. If you can afford it, you can get some of the best care in the world,” Watney says.

The world roughly has four different healthcare systems. In the UK, for instance, the Beveridge Model is applied. Here, the government and ultimately taxation pays for all healthcare-related costs. Another well-functioning system is the Bismarck Model countries like Germany adapted. The Bismarck Model depends on a universal multi-payer system, meaning employers and employees pay into funds that finance insurances. The National Health Insurance Model combines both of these. And then there is the Out-of-Pocket Model, which is less of a health system and more of not having established care in the country. It means everyone pays all expenses themselves, which, unfortunately, counts for many Americans that lost their jobs and, therefore, their insurance during COVID times. 

The US, in fact, has all four health systems, according to Watney. And there really isn’t a perfect one, but a few countries seem to do better than others. “Cuba has a really interesting health system. They do two things really well: education and healthcare. It’s a good example of matching costs to needs because all of the healthcare staff is employed by the government. Some European models are quite good, too, like the German or the UK model. Ultimately, it comes down to efficiency when these systems are judged, but what I am proposing is that health systems should actually be judged by their outcomes, not by how efficiently the money is spent,” Watney says. What he is referring to is a system that switches its focus to the patient’s well-being. “It means we don’t pay the surgeons for the number of knees they can replace. We pay them on the basis of the mobility of their patient. Usually, the surgeon’s incentive is to cut people open and replace hips and knees. But what if we paid them anyway even if you don’t need to get your knees replaced?” Watney explains. An outcome-based system would reward the surgeon for the amount of people that are walking well – not for how many knees he or she replaced. “This system could make a big difference to delivered healthcare in the US and reduce the cost of healthcare overall.”

The US healthcare system is quite broken in many areas. However, most of the people I interviewed got the care they needed – sooner or later – but not without a long and straining fight. In my case, after four weeks of daily calls, taking every legal route possible, an independent reviewer assigned by the California Department of Insurances decided to overturn my insurance’s decision. As a governmental entity, the Department of Insurances has the last word, which forced my insurance to authorize the MRI without further delays. I won. However, the process put an immense strain on my mental health. I had the MRI on July 16, seven weeks after my doctor ordered it. Fortunately, it came back negative; no cancer. Steve got his second liver, but only because his family was fortunate that their new insurance covered the expenses. If they didn’t have this option, he would likely not be here today. Amy got her surgery; however, too late. She has to live with a permanent disability. And Barby’s fight continues. Unless she can pay her co-insurance in total before surgery, she won’t get the treatment she needs. 

Even though, we have seen positive developments in the US healthcare  system with the ACA, for example, it’s still a long way to go until we meet the needs of most Americans. Specifically people with chronic illnesses and disabilities need better and faster access to healthcare without discrimination. We can only hope that the hard work of organizations such as the PAF or Families USA, and researchers like Dr. Arghavan Salles pays out at some point and improves conditions for all Americans. Until then, we have to keep fighting for the most important part of our existence: our health; and the care that we need to continue living the best way we can. 

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By Karina Ulrike Sturm

*The insurance company did not respond to several interview requests.

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