Category Archives: Insurance

Just Add It To The List

The life of someone with a chronic illness is not easy. Not only do we have to live with the cards we are dealt, but we are constantly bombarded with new ones. Every time a new symptom pops up in our lives, we have to question it: Is it caused by the tremendous stress we are under? Is it a new symptom to a current illness? Is our illness getting worse? Is it, Heaven forbid, a NEW illness?

The sad truth is that those of us with a chronic illness -like fibromyalgia or the plethora of autoimmune diseases out there- are susceptible to developing other illnesses. We can lose track of all the diagnostic labels thrown at us by well-meaning doctors. It is a dirty secret in the fibromyalgia community that none of us have just fibromyalgia. If I counted all my illnesses using my fingers, I would easily need both hands. Now image trying to take medications for all of those! I am lucky enough to have found medications that treat multiple symptoms and illnesses.

Recently, I succumbed to family pressure to jump down the rabbit hole of medical tests yet again. After enduring so many tests in the past with little to no helpful results in the end, I was not eager to go through them again. However, my symptoms were not getting any better and those who care for me were very worried. For three years I was losing weight at a steady rate without intentionally changing anything I was eating or doing. I would have flare ups of symptoms for discreet amounts of time – e.g., nausea, vomiting, abdominal pain, bloating, inability/desire to eat, feeling full quickly.

I started going to a GI doctor at a prestigious hospital hoping she could figure out the problem. If anyone ever complains that socialized healthcare in Canada or the UK is slow, they obviously have never tried to be diagnosed in the US. Unless you are in critical condition (i.e., dying), the process can be painfully slow. It can take up to three months to get an initial appointment with a specialist. Then, another month to get in for a test and another month to see the doctor again. If your tests come back normal -like mine do- this goes on and on. After almost eight months, I still have no official diagnosis but have dished out the overwhelming sum of almost $1000. How does one pay that bill on disability?

I was so distraught over the last test coming back normal that I called my doctor. I was upset and discouraged. I honestly did not see the point in going through more tests. I was finally on an anti-nausea medicine that helped enough to stabilize my weight. I was to the point where I was just going to suck it up and suffer through my debilitating flare ups. I was already on disability. My prospects of ever working full-time again were slim to none. So what if I was in more pain and more disabled than before? What difference does it make? It isn’t like they give you more money the more disabled you are. There is no prize for being the “disabled-est.”

I would like to congratulate my doctor for not giving up on me. She is also the type of doctor who doesn’t blindly follow tests. She knows they are not always correct. She knows that they can be normal at times even when you are really sick. She knows that if I am not in a flare up those omnipotent tests are not always omnipotent.

She came up with a working diagnosis – gastroparesis. It basically means that during flare ups, my stomach forgets to digest food so it just sits there for hours and hours and hours. I can vomit my dinner six hours later. That, my readers, is not normal! Instead of waiting for a test to comeback positive, she prescribed medication for it.Unfortunately, the medication does not always work and has a list of permanent side effects. Those are side effects that do not go away even if I stop taking the medication. I am not sure I want that added to my already complicated life. So what does that leave me? You guessed it! I need to suck it up and live with it…

Broken Health: Status of Healthcare in America

It is with a sad heart I report the status of the healthcare system in America as broken and with no hope in sight. When the Affordable Care Act was passed into law (and survived numerous attempts to repeal or severely limit it), I was excited. Finally! Everyone now has the opportunity to have healthcare coverage. We are finally moving towards universal healthcare like EVERY OTHER DEVELOPED COUNTRY IN THE WORLD!!!

But I was wrong! I had been misled. It is possible to have health insurance and still not be able to afford to go to the doctor and/or afford testing ordered by your doctor. Sad, but true… With copays to see specialists usually set at $50 per visit, who can afford to go? And when a test is ordered, no one can give a definitive price for it. I know one woman who thought she was being smart by shopping around for a cheaper MRI. She went to a specific facility because they quoted her the best price under her insurance. Guess what? The final price billed to her insurance company and then to her was significantly higher that what she was quoted. Upon questioning the facility, they said there were other charges applicable on top of the simple price for an MRI. Of course, they failed to mention those extras when she was shopping around. There is no system of accountability when this happens. No other business in this country could get away with blatantly irresponsible behavior. There is no governing body responsible for ensuring that patients and health insurance companies are not being bilked by providers. There are serious consequences to this lack of oversight.

I briefly knew a woman I met through my advocacy efforts. We talked during monthly conference calls and on Facebook. This past May, I got the opportunity to meet her in person at the Caterpillar Walk in New York City to raise awareness and funds for fibromyalgia. For a few short months, this free-spirited woman suffered from debilitating nausea, vomiting, and other gastrointestinal problems (on top of her fibromyalgia and other chronic health issues). Because of the ACA, she was able to afford health insurance and was finally diagnosed with clostridium difficile colitis. WebMD defines this as:

bacteria that can cause swelling and irritation of the large intestine, or colon. This inflammation, known as colitis, can cause diarrhea, fever, and abdominal cramps.

It is a completely treatable illness. There is no morally acceptable reason for an insurance company to deny treatment coverage – but hers did. She could not afford the inpatient treatment that her doctors recommended without insurance. So she did the only logical thing she could think of – she switched insurance companies. Less than a week after switching health insurance companies and finally being admitted to the hospital for treatment, she died. Allow me to let that sink in… She died from a curable illness. She died in a country that prides itself on being THE BEST in everything (even when it is not). She died where help was only a breath away. She died…

Unfortunately, this story is not unique. It happens all too often.

Who Knew That Medicare Does Not Pay For Most Wellness Visits?

I am in the middle of appealing Medicare’s decision to NOT pay for my annual wellness visit with my primary care physician. When I called my doctor’s office to find out if they had any idea what the problem was, I was told that there are numerous billing codes that can be used for an annual wellness visit, BUT Medicare only covers a pitiful few of them. What the heck is going on? Doesn’t Medicare realize that I am on disability due to several chronic illnesses (although none of them keep me from complaining online) and need periodic checkups to monitor my health? I take numerous medications that can negatively impact my liver and/or kidneys at any time. Without annual testing, a problem can go unnoticed until it is severe – or deadly. Doctors rely on blood and urine testing to make sure medications are not destroying their patients.

During the same wellness visit, I also complained about problems swallowing and severe heartburn – the type of heartburn that keeps a person from eating just to avoid the pain. I think THAT qualifies for a visit to the doctor. Don’t you? I saw my primary first to find out if I should see a specialist and to get recommendations. Isn’t that what my doctor is there for? If Medicare won’t pay for a visit to the doctor when I am sick, what will they pay for? Incidentally, they had no qualms about paying for my specialist bills. So what gives?

As I said in the beginning, I am in the process of appealing. My first appeal was denied so I am appealing the appeal now. I came to find out that Medicare requested my medical files from that visit for review a few weeks before the holidays, which was ignored by my doctor’s office because the person who sends the files is out until the middle of January. Seriously? No one in the doctor’s office could make simple photocopies and fax/mail them to Medicare? Apparently my doctor’s office doesn’t want to be paid – I keep ignoring their bills in the hope that Medicare will eventually come to their senses and pay for my $224 doctor’s bill. Come on, folks! I am on disability. Do I look like I am swimming in $100 bills? Anyone who collects Social Security (for retirement or disability) knows that every year our benefits cover less and less as inflation raises the prices around us. It is like being frozen at the salary you last made even if that was 10 or 20 or more years ago. Not the best of situations, I tell you.

So, Medicare, when are you going to get off your stingy butt and eliminate all this red tape regarding paying for annual wellness visits?