THE INSURANCE SERIES: Part 2 – Understanding your coverage and unlocking good habits

This blog was written by me for part of a series for PatientsLikeMe. I have been given permission to post here. Note that the link to the original post from 9/20/2017 is here.

part2 insurance series

Most of you have probably played the game “telephone” when you were younger. The first person whispers something to the next and it goes down the line of people until the last person says what they were told. 99% of the time, the result was absolutely nothing related to the original statement. Things got misconstrued, wording got changed, and as a result it was totally wrong. Well the same goes for health insurance and healthcare in general. The saying, “If it isn’t documented, it didn’t happen,” is used all the time.

Unlocking good habits

Documentation is the key to healthcare. There are many times when we speak to someone who passes that message along to another person, and your original question has likely been reworded in some form. If you don’t remember anything else from this blog, here is what I want to plant in your head: Document! How many times have you called a doctor’s office or insurance company, had a conversation and then hung up the phone without giving it a second thought? How many times have you taken notes during conversations or written a summary afterwards regarding the content? My guess for many of us would be zero, zip, zilch, nada! You’ve always assumed that the information that was passed along would be correct and that whoever was answering your questions was documenting everything you said.

Start making it a habit of keeping a notebook for your healthcare conversations. That way if there is ever a question of what was discussed, you can refer back to it. If possible, use patient portals if they are available through your doctor or insurance company. Most, if not all of them have messaging features, which is a simple way to ensure things are documented. My practice has always been to attempt to send messages for non-urgent matters. This can also be used for evidence if anything becomes a legal issue.

Knowing your coverage inside and out

No matter what insurance you have, it is essential to know what doctors and facilities are covered. If you have private or employer-based insurance, who is in your network? Are there differences in your in-network vs. out-of-network coverage?

A handy place to find this information is on your insurance company’s website. Most companies have a link that lets you search for doctors and facilities. Your insurance will have your PCP (primary care physician) listed already – make sure that it is correct and update it if there is a change.

Do you remember the pile of paperwork that you received when you got your current insurance? Did you read it? I mean REALLY read it! If you’re like many consumers, you probably skimmed through your Summary of Benefits and were able to see a brief overview of what your deductible, copay, premiums, and out-of-pocket maximum amount were. It also described the difference between coverage for in and out-of-network coverage.

The Certificate of Coverage is going to be your “bible,” if you will. It is the 70+ page document that goes into every detail you ever wanted to know about your coverage. This is a document that I highly recommend you read. If you ever have doubts or questions about anything, this is where the fine print is at. It also will address how to file an appeal or grievance.

Taking a closer look at the types of insurance

Maybe it’s time to look for something more affordable or perhaps you are just coming off someone else’s plan. No matter the circumstances, insurance is something that can be very confusing. Premiums, deductibles, copays, blah, blah, blah. What does it mean? That’s what I can imagine going through your head. Brace yourself for a tidal wave of information.

If you’re wondering what the different types of insurance are, you’re in luck. It’s time for a bare necessities lesson (minus the singing and dancing). Check out this handy one page I wrote that shows the types of public and private insurance available.

Understanding your pharmacy options

Often there will be a Pharmacy Rider, which will list the tiers or classifications of medications for coverage. A rule of thumb is that a generic drug is always less expensive than a brand name. Some patients are unable to tolerate generics or experience a different response than with the brand name, if that’s the case you can ask your provider to file a prior authorization form with your insurance company showing you’ve tried generic alternatives of the drug which have not had the desired effect, and you’ll need to be prescribed the brand name version only. Once again, this information can usually be found in the certificate of coverage or by simply calling customer service.

In addition to your pharmacy coverage, there are many programs available for patients with private or employer-based insurance. Almost all pharmaceutical companies have financial assistance available or will offer copay cards for newer medications. This is the case very frequently for injectable medications.

Also, don’t hesitate to do an internet search. There are a lot of free drug discount cards available. However, many of them cannot be used in conjunction with insurance. That is a detail that you will have to clarify.

I truly hope that this blog has been helpful. There are so many different things that go on within a single policy for one patient that it can be overwhelming. Always ask if there is ever doubt, and DOCUMENT. Don’t play the telephone game!


THE INSURANCE SERIES: Part 1 – Losing Eight Doctors Overnight

This blog was written by me as part of a series for PatientsLikeMe, I have been given permission to post here. Note that the link to the original posting from July 10, 2017 is here.

Kimberly (firefly84) is part of the PatientsLikeMe 2016-2017 Team of Advisors. She’s living with autonomic neuropathy, a rare disease that prematurely ended her career as a registered nurse. In her time as an RN, she was often charged with navigating the ins and outs of insurance companies on behalf of her patients, something she says can be like “trying to find a needle in a haystack.” Kimberly tells the story of how eight of her doctors became out-of-network overnight when her insurance changed, and how she navigated the system to replace those providers and get her care team back on track. Here’s her story…

Last fall we knew that there was a strong possibility that there was going to be a change in our employer based insurance, and that turned out to be true. A decision had been made and we received final word ten days prior to the switch. Along with the letter, there was a form that you could fill out if you had a complex case, or needed assistance setting up care. As a patient who happened to have a very complex case, as well as someone who was going to be utilizing resources galore, this form was what I needed. This piece of paper was my golden ticket. It was filled out almost as soon as the envelope was ripped open. I also attached two more pages with everything detailed, so there was nothing left for the imagination. Medications, treatment dates, specialists, and conditions all were listed, so that they had as much information as possible to start the process.

From in-network to out

We were currently with an HMO Provider in the same town, but our new HMO was not part of the same network. After frantically searching to see if ANY of my providers were going to be able to continue caring for me, I sat in shock.

“Eight of the members of my care team (doctors and physician assistants), were now going to be considered out of network.”

I was feeling a little bit like Cinderella, with a midnight curfew and had to work on setting up a new care team FAST! Luckily, I have an amazing primary care physician (PCP), who was still considered in-network, as well as my local hospital. I knew that I would need referrals to get established with new specialists and my PCP initiated the referral process for multiple specialties. Those took a backseat for the moment, as I had a more immediate need. My monthly infusion for my immunodeficiency was scheduled within a week of our plan change, and I knew that I didn’t even have an immunologist anymore, let alone orders for the infusions! Calling back on a whim one more time to ask for a transitional case manager turned out to be the piece of luck that I needed.

A disconnect in healthcare

The transitional case manager was only responsible for making sure that the first two weeks of my care were set up correctly. Prior to the end of the first two weeks of care, I called and asked to be assigned a complex case manager to move forward with. After speaking to triage, I received a phone call that made me really reflect on the multitude of reasons that led people to enter healthcare. After about five minutes on the phone with a nurse for the case management portion, I was asked two questions:

Her: “Can you get to doctor appointments?

Me: “Yes”, I find rides all the time because I can’t drive more than 10 miles.”

Her: “Do you need help meeting goals?”

Me: “If by goals you mean symptom control, yes, but if it’s checking blood pressures and reporting back to my physician, then no.”

Then came the moment when I almost completely came unglued. The nurse, who was doing her job, calmly said, “You don’t meet the criteria for complex case management.”

My reply was as polite as I could muster at that point, “I just lost eight doctors, so I don’t have any appointments to get to, how about some help with that?”

I was told that it wasn’t part of their job and then the phone line went dead. Sitting back in shock all I could think of, was what if I was sitting at her desk? Perhaps some customer relation training should be part of the continuing education. I got over the incident as quickly as possible and then called back to triage for case management. We discussed what had transpired and then I was assigned a social worker, who has made the entire transition much easier. Neurology was going to be the next hurdle. I was due for a three-month checkup for my autonomic dysfunction and several other procedures.

These were due the beginning of December and I had given ample warning that if we did not stay on the same schedule for procedures, that I would end up in the hospital with a migraine. Let’s just say that my warning became reality. They believe me now.

Rebuilding a care team

We also found out that nobody in-network treats patients with autonomic issues. So, we were given the choice of two facilities to go to. We picked one and literally the beginning of May was when we had our first neuro visit. This was six months later than my previously scheduled one was supposed to occur.

We have been with this insurance provider for eight months now and still aren’t completely settled. Sometimes I have days that it is a full-time job just to return phone calls or update doctors. Plus, I have a case manager with insurance and a social worker within the facility. Remember the form that was mentioned at the beginning? Well, it got lost; good thing I kept a copy. It has been the guide for my care as we have been moving forward. If I didn’t have case management background, I would be lost. I would have given up and my disease would have complete control. I never have given up easily and I don’t intend to now. Every day is a new one, full of opportunity, but this has been by far one of the largest challenges that I have faced in this entire illness.

Kim Call out box



How much a journey changes

If you would have asked me in 2014 where I would be today…

Everyone has goals and dreams for life. We all were asked what we wanted to be when we “grew up.” From a very young age, I knew without any doubt that I was going to be a nurse. My health was poor from the time I was born. When you spend your entire life around the medical community, there are pretty much only two options.

The first: run like hell the other direction and never look back! The second: dedicate your life to what you have already grown up with. I chose the second. When I played with my dolls, I always had a hospital set up. They got shots and IVs. When I got sick, my Cabbage Patch doll also was sick. If Vicks Vapor Rub went on my chest, the doll got it too.

A word to the wise…don’t put Vicks on a Cabbage Patch doll. It doesn’t make the doll feel better; it actually makes everyone around you feel worse because of the stench! Okay, so I learned a lesson; menthol and fabric don’t mix well…but I still was providing compassionate care at the age of four and didn’t even realize it.

I was always sick with respiratory or sinus problems from September to May. Every single year this was the pattern. Needless to say, that equals A LOT of doctor visits. By the time I was in junior high, I was telling the nurses what vein to use for an IV. I was picking up knowledge without having to pay for college credits, although I think college ended up being cheaper than medical bills in the long run.

In high school my mom got diagnosed with Multiple Sclerosis. She had been showing symptoms for a long time and we just needed the “multiple” symptoms to finally get the label. One morning she woke up and couldn’t see out of her left eye. I drove her two hours to the neurologist instead of going to school. At that point I had transitioned to caregiver, aside from the fact that she was my best friend.

Starting nursing school finally was my dream and it happened. I was struggling with migraine headaches along with illness after illness, but I graduated with honors. On my weekends when I went home, I was able to practice my injection skills on my mom, who by then was requiring medications for her MS. There weren’t any oral options available yet.

I had always worked in small, rural hospitals. When I say small, I mean three nurses on a night shift, kind of small. The one area that scared me the most, that I vowed I would never work, was the Emergency Room. It turned out that it was one of my favorite places. Before my life was turned upside down, the areas that were my passion were ER, Intensive Care, and Hospice.

Yes, I realize that those are on completely different ends of the spectrum. But actually they are on very similar ground at the same time. Compassion is needed so much in all three areas. In a week, I could have been with a family who had a son or daughter killed in a car accident, had an 80-year-old father removed from life support, and had a 40-year-old pass away from liver cancer. Each situation was unique, but each required empathy, tenderness, and more compassion than you could imagine.

In 2010, I had a mass in my chest that was removed because we thought it was cancer. That was in February. In August, my mom had gastric bypass surgery. Three days later she had a seizure, aspirated, had a respiratory arrest and ended up on a ventilator. I was by her side so much; I wished I could have curled up in bed with her. In the morning I would walk in and the chart was always open for me to look at her labs, ventilator settings, and new orders from the night. Checking the doses on all of the IV medications was my next step and then finally rounding with the doctors. Sitting down each day with the doctors by myself and looking at images. Discussing situations and knowing that as a Registered Nurse, this was a critically ill patient who was losing the battle. Also knowing as an only child, that my mom wasn’t going to walk away from the hospital.

Each year, I blindly walk this road. From August 26th to September 11. It’s a long, narrow road filled with emotion. I’m typing this while tears run down my face. My best friend, my mom, my patient…I had to do the compassionate thing, I had to let her have dignity in her final moments. Making the decision to withdraw life support is one that nobody should ever have to do, even if you know it is the correct choice. No matter how ready you think you are, nothing prepares you for the finality of it. Nothing brings a parent back…no matter how hard you cry or go through the “what if” game…nothing.

Four years later, my nursing career was stopped in its tracks. A virus triggered autonomic nervous system meltdown. My body began to abandon me and I felt so helpless. I knew how rare this was and even as a nurse, I couldn’t do anything to stop it. At the same time, I finally was diagnosed with a Primary Immunodeficiency. Luckily, we could do something about that. 10-hour long monthly infusions, provide me with my “immune system in a bottle” for four weeks at a time.

Last year, I found my voice again. Although my health is still deteriorating, I have been able to advocate for improved healthcare. My compassion is able to shine through and still make an impact. It takes my mind off of my situation and allows me to make a difference on a much larger scale.

Every three to six months, a new symptom shows up. That means learning how to live all over again. More rare diseases, genetic testing, mitochondrial testing…it’s coming.

At the same time, I become more and more involved in advocacy. This disease may have my body, but it doesn’t have me! Welcome to my new life.