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For many people, health care is something to think about once, maybe twice a year.
They pick a health insurance plan in the fall, get an annual physical and don't worry about their plan unless there's an emergency.
But for the millions of Americans who have a chronic disease, health coverage is an ongoing, expensive and sometimes bewildering challenge.
Health care in America "just doesn't seem like it has a rhyme or reason," said Fatima Muhammed, 29. “It just seems like random laws mashed together. There's no pattern or systematic way of understanding it."
Muhammed has sickle cell anemia, a disorder that causes red blood cells to become shaped like a crescent. This shape hinders blood flow and leaves her body short of oxygen.
Any form of physical stress can lead to oxygen restriction, a regular and painful occurrence for Muhammed. When it happens, she can drink fluids, take medication and rest to alleviate the pain.
If that doesn't work, she must go to the hospital for oxygen or a blood transfusion. While she was pregnant with her now-1-year-old son, she was in the hospital every month for an average of five days.
"As you can imagine, that's a really high cost," Muhammed said.
Having a pre-existing condition like sickle cell anemia, diabetes or HIV was even more expensive prior to the passage of the Affordable Care Act, when these conditions would lead to an automatic decline for health insurance or higher rates. The health care law signed by former President Barack Obama ended this practice, banning insurers from refusing to cover or charging more to people with pre-existing conditions.
This protection is under threat. A lawsuit filed by a group of Republican governors and state attorneys general seeks to overturn the Affordable Care Act, including its protections for people with pre-existing conditions. A judge in Texas ruled in 2018 to strike down the entire law, but the decision was appealed. A panel of appeals court judges is expected to decide on the case by the end of the year.
"That really scares us, my wife and I," said David Simon, 53.
Simon has diabetes. He worries a repeal of the law could make his health insurance even more expensive. Even with the protections of Obamacare, his annual premium for a plan from the federal marketplace is $24,000 and his deductible is $15,000, which Simon considers "reasonable." He spends $100 a month on insulin.
Simon, a real estate broker, can afford to pay this cost on his own and therefore doesn’t qualify for subsidies unlike 87% of his fellow Obamacare shoppers. Aside from regular visits to an endocrinologist and a diabetes consultant, Simon reasons that he's healthy enough to avoid a pricey hospital stay, so he doesn't mind a high deductible.
"I don't even think about it," Simon said.
But his medication and his premiums have become steadily more expensive each year. He's gone from taking oral medication to insulin injections to an insulin pump. Vials cost $300 every three months.
"I wish insulin cost less," Simon said. "I wish they had it in a generic form of some sort."
Enrolling in health insurance can be confusing even for people with uncomplicated health needs. You need to know the difference between terms that may be unfamiliar, like a premium, copay and deductible. (Few people do, based on a recent Policygenius survey.)
People with chronic illnesses must do even more homework, said Caitlin Donovan, a spokeswoman for the Patient Advocate Foundation, a nonprofit that helps patients with chronic and life-threatening diseases access health care. For example, does the insurer require you to get its permission before you can use coverage for medical procedures or prescriptions? If you need medical equipment, how often will the insurer cover replacements?
Price is far from the only factor to consider.
"Your coverage may seem like a good deal right off the bat, and the second you need to use it, it doesn't cover anything you actually need," said Donovan.
Under the Affordable Care Act, every plan must include a summary of benefits outlining the broad strokes of what it covers. People with chronic illnesses often need to dig deeper, to see whether plans cover specific providers, hospitals and medications, Donovan said.
One way to check is by using the insurance company's online portal, but they aren't always easy to use, Donovan said. Another option is to call the provider directly to find out if they'll be in-network during the plan year.
Deductibles are a particularly pressing concern for people with chronic illnesses. Healthy people talk about their deductible in hypotheticals. If they get sick, or if they get into an accident, they'll need to have that amount on hand.
In contrast, many people with chronic illnesses plan assume they'll hit their deductible, thanks to frequent doctor visits, tests and prescriptions. A high-deductible health plan can sometimes be a sound financial choice, but for frequent users of health care, a lower deductible can make health care costs more predictable, said Mark Fendrick, a professor and director of the Center for Value-Based Insurance Design at the University of Michigan.
Muhammed prioritizes a low deductible when she's picking a plan for her family. She ends up in the hospital so often, even a high premium is a justified cost — she usually hits her out-of-pocket maximum.
"I feel like we budget well enough so it's not as big of an issue," Muhammed said.
Not everyone can afford high premiums, though. Research by health economist YoonKyung Chung shows the onset of a chronic illness can reduce earnings by as much as 18% in the long run.
Health disparities often go hand-in-hand with financial disparities, Fendrick said.
"People with lower incomes also have higher numbers of chronic conditions compared to those who don't," Fendrick said.
For more than a decade, Fendrick has pushed for a policy change that would make treating chronic conditions more affordable. The IRS finally adopted the rule, which allows high-deductible health plans to cover 14 services to treat chronic illness on a pre-deductible basis, this year. Previously, insurers were not allowed to cover these services, which include blood pressure monitors for people with high blood pressure and inhalers for people with asthma, until patients hit their deductible.
Ruby Levine, 30, has spent countless hours on the phone fighting administrative battles over health care. It took 33 phone calls — she counted — to transition from an individual health insurance plan to Medicaid.
Levine has chronic pain and has been diagnosed with fibromyalgia. She's studying to become a social worker, so she should be well-versed in dealing with health insurance.
"It's kind of my job to understand it both personally and professionally, but it's complicated," Levine said. "It's terrible."
Battling bureaucracy is part of life for people with chronic illnesses, Donovan said. And it can have consequences beyond time spent on the phone.
A recent Policygenius survey found that more than one in four people had avoided medical treatment because they were unsure what their health insurance covered. The survey didn't ask specifically about people with chronic conditions, but Donovan said they tended to face more obstacles because they cost insurers more money. These obstacles include requirements to get prior authorization before receiving certain treatments, and step therapy protocols, which require patients to try less expensive drugs and treatments before "stepping up" to more costly methods.
"Administrative headaches, perhaps not by intent, but certainly by execution, stop people from accessing their care, and they kick in more frequently for higher-priced things," Donovan said. "You have people with chronic conditions who aren't getting the care they need because there's so many barriers in the way to get it."
One thing that can make fighting these battles easier? Having someone in your corner.
Levine is in Facebook groups for people with chronic pain, where she's given and received recommendations about specific doctors in her area, and found an outlet to share her struggles and get support. Levine has also gotten help from her family.
"I have parents who have been able to support me financially when I haven't been able to support myself," she said.
When she had individual insurance, her dad, who is retired, helped her call doctors to find out who took which plans, saving her hours.
David Simon, the real estate broker from New Jersey, reached out to the Diabetes Foundation, a nonprofit that helps people with diabetes access medical resources. The foundation connected him with a diabetes consultant at a local hospital who helps him manage the disease.
"Even someone else to talk to about diabetes makes a world of difference," in coping with the highs and lows, Simon said.
Everyone with a chronic illness should have someone in their life who can help navigate the health system, even if they're not a professional, Donovan said.
"If you can just have someone who is a neighbor, a family member, a friend, either go with you to an appointment or help you with some of these phone calls, we think you're much more likely to get the result you need," Donovan said.
Case managers at the Patient Advocate Foundation make an average of 22 phone calls per issue, and they're professionals. It helps to have someone to split the workload of managing a chronic disease, or even just to keep your morale high, Donovan said.
If you're having trouble finding someone to help navigate the health care system, a good place to start is online groups of people who have the same illness. In addition, the Patient Advocate Foundation has a free app called My Resource Search that allows users to search for various types of assistance, from transportation to help finding resources to aid for medical bills.
"Find a community," Levine said. "Find other people who have been doing it."
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