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Health Care Is Too Expensive: How Patients Advocate for Themselves to Lower Costs

Understanding your medical coverage options and demanding answers are critical tools.

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Design by Zooey Liao/CNET

This story is part of Priced Out, CNET's coverage of how real people are coping with the high cost of living in the US.

Evan Stewart has epilepsy, so going a day without health insurance isn't an option. When he left his job in the medical field to tour with his musical band, he was able to keep his benefits through COBRA. That meant a large part of his income — $800 a month — went toward keeping that coverage until he qualified for another insurance plan with his new employer. 

Brandon Douglas/CNET

The cost wasn't bad considering the alternative. "If a seizure lasts me more than five minutes, an ambulance has to come to my house, and then I'll probably go to the emergency room," said Stewart, who lives in Seattle. "Without insurance, the ambulance ride would bankrupt me, and the hospital stay would keep me in medical debt for the rest of my life." 

Stewart was nervous about switching his job because he didn't want to give up his health care benefits. That's fairly common in the US: One out of every six adult workers who get medical insurance through an employer stay in their jobs out of fear of losing coverage, according to a recent Gallup poll. While the majority of larger employers offer health benefits, annual premiums have soared in the last decade, reaching a yearly average of $7,911 for single coverage and $22,463 for family coverage. Many of these plans also have costly copays and high deductibles, requiring employees to pay even more. 

Even with a good insurance policy like Stewart's, Americans often find themselves paying insurmountable out-of-pocket medical expenses. 

"We have an incredibly complex health care system," said Amy Niles of the PAN Foundation, a nonprofit that helps underinsured patients in need. "And unfortunately, at the end of the day, a lot of the cost gets shifted onto the patients." 

That's why, according to Niles, it's important to understand the price tag when considering your own health needs. Getting affordable medical care isn't impossible, but it means sifting through an array of options: from private short-term plans to the Affordable Care Act's marketplace tiers to government- or state-based insurance, all with different rules, requirements, enrollment dates, premiums and deductibles. It also means becoming a strong self-advocate. If a household can't afford health insurance, there are other resources that provide help and low-cost care.

'My heart goes out to all freelancers'

Freelancers and gig workers without access to employer-based plans can jump onto their partner's plan or apply for Medicaid, but often they have to select the plan they can afford on the health insurance marketplace, commonly referred to as the exchange.

Jeanette Smith
Jeanette Smith

Jeanette Smith, a freelance fiction editor who resides in Dallas, said she has paid anywhere from $150 (with a premium tax credit) to $450 a month for self-employed insurance, and the costs have only been increasing. Though monthly insurance premiums on the exchange vary by tier, plan and state, the US average for the lowest-cost plan is $342. Smith said if she goes with the cheapest plan, she'll have a $7,200 deductible -- and the premium is still a big portion of her monthly income. 

"My heart goes out to all freelancers navigating these tricky waters," Smith shared in a LinkedIn post as this year's open enrollment began. "May we miraculously find (and afford) the plan that helps us the most rather than resorting to the one that screws us the least." 

Deciding on a plan takes a lot of guesswork and some risk, according to Smith. "It's a matter of trying to estimate how many times you might go to the doctor or what your prescriptions might cost or what a visit to the emergency room might be," she said. Still, it's impossible to predict if you'll have some kind of accident and suddenly need better coverage. 

The first step to selecting health insurance is reading the fine print and knowing all the details, according to Niles. "When looking for a plan, you want to understand the costs relating to that plan," she said. That means knowing the deductible, the premiums, the coinsurance and the out of pocket maximum, as well as confirming that the plan will cover specific needs, such as your prescription medications. 

Read more: Millions of Americans Can't Afford Their Prescription Drugs. Now What?

'The system was designed to be obtuse'

A huge portion of medical expenses comes from the high cost of prescription drugs. 

Jacob Sherman, who works as a research tech in Atlanta, has type 1 diabetes and depends daily on his insulin, pump and blood glucose monitor. When Sherman was offered different coverage options through his employer, he picked a plan that provided "preventative care prescriptions" at no cost. 

jacobsherman.png
Jacob Sherman

But after two months of picking up his insulin pump supplies from CVS without a problem, he suddenly got a bill of over $300, which he couldn't afford. Sherman spent more than four hours on the phone with his insurance company and his prescription provider, where he was bounced between representatives giving him conflicting information. Frustrated, he reached out to a diabetic co-worker for help. 

Sherman discovered that his insurance would only cover his meds if he got them by mail, instead of at the pharmacy. "The first couple times I received the prescription in person without issues was apparently a grace period," he said. "But I was never informed about this, nor was I told to request the prescriptions by mail."

The same thing happened with his insulin. After initially being charged a $35 copay, he was later informed that a monthly supply would cost him $800. After a multitude of phone calls, Sherman found out that he needed to order a three-month supply through a new doctor's prescription in order to be covered. 

In both instances, Sherman was dangerously low on his meds and supplies, and without them, he'd be hospitalized. "During the whole process, I got the impression the system was intentionally designed to be obtuse in hopes that I would cough up an extra month's rent worth of money to avoid a medical emergency," Sherman said. 

Those kinds of surprise expenses contribute to the vast amount of debt due to health care costs in this country. Nearly 20% of all US households carried medical debt in 2017, according to US Census Bureau data. About half of those reporting significant medical debt owe more than $2,000 from not being able to pay their bills in full. The same study showed that families that had trouble affording housing costs, such as rent or mortgage payments, were nearly three times more likely to carry high medical debt. 

The importance of self-advocacy 

To avoid going into debt, Sherman did something that many Americans don't always have the time, patience or wherewithal to do: He demanded answers.

The hardest thing for people struggling with an insurance issue or medical bill is knowing how and when to ask questions, according to Caitlin Donovan, senior director of public relations at the National Patient Advocate Foundation. In her line of work providing free case management and financial assistance to patients with diagnosed conditions, she said that usually the provider or insurance carrier presumes you're going to give up and eat the cost. "Even people who know how to navigate the system get bulldozed," Donovan said. 

The key is to be persistent regardless. For example, the first step to becoming a self-advocate is to "assume there's a mistake in every medical bill you get," Donovan said. In nearly half of the medical bills that the Patient Advocate Foundation reviews, there's some kind of error the patients won't see, such as a wrong billing code, a double charge or a data entry typo. 

It's also important to check any medical bill against an insurance EOB, or explanation of benefits, to make sure an insurance claim was processed and that the provider isn't sending the patient a bill first, said Donovan. If insurance has covered its portion of the claim and the cost is still high, Donovan recommends asking the insurance company why something isn't covered or asking the provider to change the diagnostic billing code. In some cases, patients can use the healthcare bluebook to find out how much a medical procedure should actually cost and demand fair price transparency. 

If that fails, Donovan said it's always worthwhile to dispute a high bill by going through the appeals process. "Over 40% of appeals work out for the patient," she said. The Patient Advocate Foundation offers training sessions and sample letters for clients who need assistance submitting an appeal. 

The last step is for patients to figure out how much they can actually afford and then propose a payment plan to the provider or insurance carrier. "If they say no, you're no worse off. But they may say yes and meet you halfway, and then it's really worth it," Donovan said. 

Know your options — and the costs

About half of US adults say they have difficulty affording health care, and a large share of Black, Latino and lower-income households delay or forgo medical care due to cost, according to a report by the Kaiser Family Foundation

What about those patients who can't afford health insurance? On the Medicaid website, low-income adults can check their state's eligibility criteria and apply for the program. Patients can go to the federal healthcare.gov website to see what low-cost coverage they qualify for through a quick location search. There's also a useful cost and coverage breakdown of the health plan categories on the health insurance exchange: bronze, silver, gold and platinum.

Plans with the lowest monthly premiums generally have very high deductibles, which means the insured patient will be covering a large amount of their costs out of pocket before the policy is activated, according to Donovan. 

"Even if you don't think you can afford health insurance, it's always important to at least carry that high-deductible, zero-premium plan," she said. That's because those plans still fully cover preventative care and service — such as immunizations, blood pressure screenings and annual checkups — without copays or coinsurance. Plus, if there's an emergency, at least there's some kind of foundational base to get treatment, Donovan noted. 

There are also catastrophic health plans, which offer protection from incurring high costs after getting seriously sick or injured, and can be an option for someone wanting to get from point A to point B. Short-term plans and private plans also exist, but Donovan said those tend to have less patient protections. Moreover, they're not subsidized like those under the Affordable Care Act, and they don't offer premium tax credits, which reduce the monthly insurance payment when purchased on the exchange. 

In underserved areas, low-cost community health centers, which rely on federal funding, and local free clinics also serve as critical lifelines, providing primary health care to millions of Americans regardless of their ability to pay. Advocates from patient assistance programs and charitable organizations also step in to fill the gap, helping patients navigate just about everything: pricey medical bills, health insurance applications, prescription drug appeals and emergency payment plans.  

The health advocacy nonprofit Families USA has a useful explainer on how to get financial assistance to pay for health insurance. Through its FundFinder, the PAN foundation also keeps track of charitable foundations that can help cover medical costs or offer other patient assistance. 

Read more: How Health Care Fails Pregnant Families