Saturday, August 22, 2009

My Story as a Nurse and Patient, in the Face of Healthcare Reform

The healthcare reform debate is heated, and has become full of scare tactics to serve an anti reform agenda.

It's important to be able to decipher the loads of articles, reports, and information, and figure out where the truth lies. It's also important to leave the political agenda out of healthcare. Healthcare is not Democrat or Republican, because illness isn't biased. No matter which side of the aisle you’re on, you need to look at the truthful facts.

If you or your family have not suffered with a serious illness or injury, or are not a healthcare professional you have not had enough healthcare experience to decide whether your insurance will adequately cover you if or when the time comes to really need it.

I have been on both sides of the healthcare system as a nurse and a patient with 2 chronic incurable illnesses. I have personally debated for a long time whether I would tell my own healthcare story. There are several reasons why I am, but mostly because I want people to understand the fine line we walk with our health, and what anyone can face in our current system.

Like many, I thought my private insurance was great, and I was covered, until I really needed it. I found out the truth as I have spent over $70,000 in 5 years on medical expenses. I went from a healthy, active, hardworking woman, and mother, to a very sick woman who had a horrific 5 year battle with insurance companies and healthcare system, in an effort to be diagnosed and treated.

I was one of the people you hear about denied by my insurance company. I fought for 4 years for one diagnosis, Chronic Fatigue Immune Deficiency Syndrome. It was nearly 5 years before I was finally and fully diagnosed with another, Sjogren's Syndrome. About 3 years into an unexplainable illness and exhaustive battle, 7 doctors wrote my insurance company recommending the Cleveland or Mayo Clinic, because they were unable to diagnose me.

Care Choices, my insurance company at the time, denied access to either clinic. I was so sick at the time; I literally felt I would die. Some days I was too exhausted and felt the battle was too big to continue the fight, and other days I felt I was battling for my life, and I had to keep pushing. I decided to appeal Care Choices.

If you have never appealed an insurance company’s decision, let me give you the ugly picture of it all. I had a hearing scheduled with the board that allowed me to bring my own representatives. I brought my family. Since I am a nurse, I am not easily intimidated by healthcare professionals, or administration. I can imagine the typical patient attending a hearing of this type would be extremely intimidated, as they sit in a board room across the table from several board members to fight for their health.

I can still picture the room, and sitting across the table from 8 or 9 executive board members with their condescending looks. The meeting was announced, and after going through the appeal I had initiated and the process, we were able to speak.

My family described to the board just how sick I was. How they had watched me go from a very health and active woman to a woman they saw dying before their eyes. How significantly my life had changed, and the years I had gone to different doctors and specialists, the countless tests, medications, and even surgeries that found no cause to my life changing illness. While watching my son and sister with tears in their eyes, I heard for the first time, my family tell this group of decision makers how they feared for my life.

This was difficult to hear. Although I had many days I wondered if I'd die, I kept that to myself for the most part to avoid worrying my family. I knew how I felt, but didn't really understand the scope of what they saw and felt. The funny thing about chronic illness is you can usually hide it pretty well. To most outsiders I appeared completely fine, when I was able to leave my bed and home. To others that really knew me, I guess I wasn't able to conceal the toll this illness was taking on me.

The board made remarks and asked questions with a patronizing tone, which would make anyone in my place angry. It was finally my turn to speak, and I quoted their mission and statements which did not fall in line with what I was experiencing. I demanded approval based on specific language in my policy. I had done my homework, and I think they knew it. I watched a couple board members change their facial expressions from condescending to sympathetic, while others remained cavalier, and appeared determined to continue the denial.

Following the appeal I was approved 2 visits to the Cleveland Clinic, one for an evaluation and one for tests. Understand when you are extremely ill, have no idea why, and suffer from multiple symptoms, it is difficult for a nurse, let alone someone without medical knowledge, to determine which department you want to be evaluated by. I had to choose a department, so with daily significant abdominal pain and 60 lb weight loss, I decided on the gastrointestinal clinic.

I took 3 years of tests results, and physician reports to the Cleveland Clinic. The physician glanced through them and asked the same questions I had been asked by the 11 or so doctors I previously went to. He said he wanted tests repeated I had already had, stating they had found more answers than other physicians with those same tests.

I went home and waited for the call to schedule the tests. The nurse from the GI Clinic in Cleveland called stating the doctor wanted a colonoscopy, upper endoscopy, and abdominal CT's performed with and without dye. She wanted to schedule the tests over a few days. I told her my insurance company approved 1 day for tests, so I couldn't have them over several days.

We both understood the affect having those tests in one day would do to my body, so she said she was going to work on further approval from Care Choices. A couple weeks went by, and we spoke again. Care Choices would not approve more than one day of tests, so she reluctantly scheduled them in one day. I had to go to Cleveland the day before to prepare for the tests.

I cannot explain what having those 4 tests in one day made me feel like. I can only tell you I was so weak I couldn't walk. I was wheeled through the hospital in a wheelchair so weak I couldn't stand without help.

Since my insurance company allowed 2 visits, I wasn't even approved to go over my test results in person with the doctor. This angered my doctor and nurse, but they were sympathetic to my position and agreed to fax me the results and go through them on the phone. They had found a couple things not previously found, but did not produce a diagnosis as I had hoped. They could not further evaluate or recommend any other department because Care Choices would not approve anything further. The decisions were not between my doctor and myself, they were made by the insurance company. The staff at the Cleveland Clinic wanted to continue to help me, but could go no further, so I was left feeling like I had exhausted my options.

It was another year of illness, and trying to control the extreme pain and fatigue before I decided I had to go outside of the network and pay out of pocket, in an attempt to get diagnosed. This was a very expensive choice, but I was out of options.

My insurance at this point was through COBRA, and coming to an end. I needed to remain insured but had only one choice other than Care Choices, and that was Blue Cross Blue Shield. The only insurance I could obtain with a pre-existing condition, which hadn't even been diagnosed. It was at this time I found out that our medical information and history is put into a national system that insurance companies have access to.

Once on BC/BS I looked for additional options. Through a recommendation of a friend I went to a clinic that specializes in Chronic Fatigue. The initial appointment was over $400, none of which would be covered by Blue Cross. Not surprised!

I went to the clinic where it was finally acknowledged just how sick I was. Most of the doctors I had been to knew I was sick, but without an official diagnosis, or understanding of my condition, they didn’t realize just how sick I was. They would recommend the next specialist or send me on my way with telling me they were sorry they couldn’t help me, good luck, and good bye.

There were times during my illness that I would’ve rather heard I had cancer than to not know what I was facing. Not knowing was much worse than knowing I have 2 chronic incurable illnesses. Unless you have been there, you have no idea the relief to finally have a doctor give this mysterious illness a name and an acknowledgement of just how devastating of an illness it is.

My 1st appointment at the clinic was very thorough. Several tests were ran that none of the previous 12 doctors had run, and several factors contributing to my illness were found. The course of treatment was discussed. I would receive weekly IV's, injections, prescribed medications, and supplements. Treatment would be expected to last at least six months to a year, maybe longer.

Now I was looking at a miracle with a hefty price tag. My only hope in 4 years…if I could afford it. It was going to come out of pocket because the clinic is not in the "network" of BC/BS, and would not be covered.

To make this story shorter, I applied for a credit card to finance treatment, and began an 8 month course of IV's, injections, and 54 pills a day. I was prescribed a medication in January that cost over $900 a month, and my prescription limit on Blue Cross was $2500 a year, not to mention the other prescriptions I was ordered.

I stopped treatment after 8 months because I could no longer afford the $700=$2000 a month I was spending. Now it was time to find another doctor who would understand Chronic Fatigue, and possibly know of a treatment my insurance would pay for. I found a Rheumatologist at the University of Michigan, Dr. Peredo, who would not only understand Chronic Fatigue, but would suspect another diagnosis on my 1st visit. After one test it was confirmed I have Sjogren's Syndrome. None of the 12 previous doctors had ever mentioned it, and it turned out to be my primary diagnosis, with CF being my secondary.

Care Choices did not have the University of Michigan Health System in their "network", so it wasn't until I changed to BC/BS that I could even pursue an evaluation or treatment there. I could have saved myself 5 years of agony, thousands of dollars and the battle of my life if I had an initial choice.

You could say, ”oh, hers is one story.” Yes, it’s true. Mine is one story, as a patient. I can tell you countless stories as a nurse, but there would be no end to this article. Not only have I been through it personally, I have witnessed it professionally, more times than I care to think about.

I highly recommend the movie SICKO. Whether you are a Michael Moore fan or can’t stand him, this movie gives a very accurate view of having private insurance and being sick in America. I was in a movie theater the 1st time I saw the movie with tears running down my face because I could’ve been one of the people in the movie, and you could be too. I thought every person in America needs to see this movie. I believe that now more than ever, while we face healthcare reform.

I read the opinions, watch the naysayers, and scare tactics out there, and wish the people fighting healthcare reform could understand how at risk they are for exactly what I went through. So many are in fear of a government based insurance. I can tell you if I had been on Medicare or Medicaid, I would’ve had a choice. I wouldn’t have been out thousands of dollars, and my entire savings. I would’ve been treated earlier and suffered less.

So many comments I see are based on ignorance of a system they have no experience in. When I see comments such as “I don’t want to change insurances, I like what I have”, I wonder how much they’d like it if they were sick like I was, or like millions of others. Put yourself in the shoes of the families who have lost a loved one who was denied treatment, or lost their home because of medical expenses. I liked my insurance too, until I really needed it. I do understand that thought pattern, but it is so far from reality when you face a devastating illness or injury. I can imagine the thoughts going through some readers minds…”not my insurance!” I say, don’t bet on it!

Like I said, I have been on both sides of the system, as a nurse and patient. We are in a crisis, and it will get much worse, unless we have healthcare reform. The 2 largest nurses associations in the US are the American Nurses Association, and the California Nurses Association, which are 3 million members strong. Both are advocating for reform, as well as a single payer system. AARP is backing reform, the largest senior advocate group in the US. AARP represent 35 million members, who have trusted their advocacy since 1958.

Think about it…Can 3 million nurses and AARP be wrong? It would be wiser to get your information from medical professionals and patients who know the system, than your political party or the media.

Angil Tarach can be reached for questions or comments at


  1. Thanks for telling your story. Reform is needed. I just hope we can get it right.

  2. Thank you for sharing your journey. You are right,unless people have been there they don't see the need for reform. I will be sharing this post!


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