I Used to Believe 'Good' Health Insurance Was Actually Good. I Was Wrong

By Crystal Lindell

Chronic pain is not a patient teacher— especially when you combine it with a private health insurance system. 

I first developed debilitating chronic pain in 2013, and I’ve been learning to live with it ever since. Over the last 12 years, I’ve been forced to learn a lot about the realities of what it’s like to live in a country with a mostly private healthcare system.

While I am currently among the lucky few who are able to mostly manage my pain with daily opioid medications, I am also now among the 26 million people in the United States who don’t have any health insurance. As a result, I pay for all of my doctor visits and prescriptions in cash.

It wasn’t always this way though. 

When I first got sick, I had what I would have described as “good health insurance” through my job. I kept that insurance until I was laid off in 2022. But in those nine years, even with that insurance, I still managed to rack up more medical debt that I could ever pay off in my lifetime. 

Until I actually needed my insurance and learned how it works, I really did believe that having it would somehow shield me from drowning in medical debt.

I was wrong.

It turns out that even with good health insurance, you can still rack up thousands or even tens of thousands of dollars in medical bills pretty quickly — even without being hospitalized or undergoing surgery.

Having health insurance means you likely pay a relatively small co-pay for routine appointments — which is good when all you need are the routine appointments.

But the minute you start needing medical tests, specialist care, physical therapy, prescriptions, and ER visits? All bets are off.

It’s partly because many of those things are not covered by co-pay programs. They fall under extremely high deductible programs that can require you to spend thousands of dollars out of your own pocket before insurance kicks in. 

Co-pays can also add up fast when you need to see a different doctor every other week, and all of them prescribe you a different name-brand prescription and a different long-term treatment.

For example, if you have a $50 co-pay for every physical therapy appointment and you need physical therapy three times a week for 12 weeks – that’s suddenly $1,800 right there. 

Or if you need a prescription that doesn’t have a generic available, it can literally be hundreds of dollars each month just for a co-pay.

The first few years I had chronic pain, I was desperate for answers and help, so I saw every specialist I could and got every medical test and treatment that was offered to me. It made sense at the time. After all, wasn’t that the whole point of why I was paying hundreds of dollars a month in premiums for my good health insurance?

But the thing about all those doctor visits and treatments is that nobody ever discusses cost with you beforehand. Instead, you only find out when you get an enormous bill in the mail weeks or even months later. 

Suddenly, the simple X-ray means you somehow owe $3,000. 

I was not making much money at the time, and I make even less money now because I’ve had to scale back my life to accommodate my chronic pain. So a lot of those medical bills just ended up with medical collection agencies, which destroyed my credit. 

The frustrating thing is that most of the money I owe was for doctors who missed my eventual diagnosis of Ehlers-Danlos Syndrome, and for treatments that weren’t nearly as effective as cheap generic hydrocodone. 

But it didn’t matter that I was misdiagnosed or how little help I got from those treatments, because I still ended up with thousands of dollars of medical debt all the same.

I always say, everyone loves their private health insurance, right up until they actually need to use it. Then they find out just how little it actually covers.

We can do better in this country. Even incremental changes to regulations around insurance companies and medical billing practices would make a huge difference. And of course, there’s always the option of universal health care, which could be modeled after similar programs that most developed countries around the world already have. 

We have the most expensive healthcare system in the world, nearly $5 trillion annually or $14,570 per person. Much of its is spent on administration and insurance billing.

Nobody deserves to end up with thousands of dollars of medical debt just because they got sick. We must do better, because only then can patients focus on what really matters: Getting better.

Many Multiple Sclerosis Patients Misdiagnosed

By Pat Anson, Editor

Multiple Sclerosis (MS) is a chronic disease that attacks the body’s central nervous system, causing pain, numbness, difficulty walking, paralysis, loss of vision, and fatigue. Patients diagnosed with MS face enormous physical, emotional and financial challenges coping with a disease that cannot be cured.

Many also discover that they don’t actually have MS.

A new study published in the journal Neurology looks at 110 patients who were incorrectly diagnosed with MS when they actually suffered from more common and treatable conditions such as migraine and fibromyalgia.   

One third of the patients were misdiagnosed for a decade or longer, most took unnecessary and potentially harmful medication to treat a disease they didn't have, and some even participated in clinical trials for experimental MS therapies.

About a third suffered from “unnecessary morbidity” – morbid thoughts of death.

"Misdiagnosis of MS is common; patients may experience common MS symptoms, such as numbness and weakness with a variety of different conditions, many that are more common and less serious than multiple sclerosis," says the study's senior author Brian Weinshenker, MD, a neurologist at Mayo Clinic.

"With the advent of treatments for MS, many physicians feel pushed to reach an early diagnosis, and may be less strict than they should in requiring more specific symptoms or objective neurological findings before making a diagnosis of MS.”

Unlike other chronic illnesses, there is no specific biomarker or blood test for MS. The nerve damage caused by MS is also associated with a wide range of symptoms, many of which are also caused by other conditions such as Lyme disease, lupus, fibromyalgia, and Vitamin B12 deficiency.

Some diagnostic tests for MS, such as magnetic resonance imaging (MRI), can also be misinterpreted.

“Nonspecific MRI abnormalities that can mimic those of MS are very common in healthy individuals, and widespread use of MRI as a diagnostic tool increases the rate of misdiagnosis," said Weinshenker.

The 110 patients included in the study were identified by MS subspecialist neurologists at Mayo Clinic, University of Vermont, Washington University and Oregon Health & Science University.

Twenty two percent of the misdiagnosed patients actually had migraine; 15% had fibromyalgia; 12% had a nonspecific condition flagged by an abnormal MRI; 11% had a conversion or psychogenic disorder; and 6% had neuromyelitis optica spectrum disorder.

"This study suggests significant and long-term unnecessary risks for these patients," said lead author Andrew Solomon, MD, a neurologist at the University of Vermont College of Medicine. "While there may be different reasons for misdiagnoses by subspecialists and nonspecialists, this study suggests that we all make mistakes, and I think we can all do better.”

A previous survey of MS specialists found that more than 95% had seen at least one patient in the past year that was misdiagnosed with MS by another provider.

Some treatments for MS carry serious side effects. One drug, taken by 13 percent of the misdiagnosed patients in the current study, can cause a potentially fatal brain infection. Other patients suffered from the discomfort and inconvenience of daily injections; others experienced side effects from medications or lacked treatment for the conditions they actually had.

There are also enormous financial costs involved. The cost of medications to treat MS in the United States now exceeds $50,000 a year.

"Premature diagnosis of MS should be avoided," says Weinshenker. "When in doubt, physicians often can defer a diagnosis if it is not clear that there is a serious neurological problem or if a patient is stable. Physicians should request a second opinion when they are unsure but concerned that it might be harmful to delay a definitive diagnosis of MS."

Weinshenker and Solomon hope their study will encourage better education of clinicians on the proper use of MS diagnostic criteria and to further studies on how to recognize patients incorrectly diagnosed with MS.