Team of Advisors member Kimberly’s care team fell apart and she was left with 10 days to build a new one

Insurance series part one


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.

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6 thoughts on “Team of Advisors member Kimberly’s care team fell apart and she was left with 10 days to build a new one”

  1. Good for you firefly84 ! I’m glad that you can work through the Healthcare system. We need to be proactive to get what we need for healthcare. See you on PLM loracs

  2. Hi Kim! Your article was really insightful! I will definitely keep my notebook handy! It is always good while it is fresh and you can remember details to write it down at the time of the conversation! Another thing I wanted to add is it is really important to get the name of the person you talk with! This can be handy if you need to get back with the same person you have talked to prior! It can save you a lot of time and frustration not to have to repeat your story to everyone in the office. Also, if you get bad information and you want to file a complaint you will need the person’s name! Thank-you Kim, I have really enjoyed these articles. Marcia Holman

  3. I am running into a similar situation right now. I have been living with until an undiagnosed gastro issue that has had me running to an ER 10 times over the last two years. The last one, the beginning of this month had me in the ER at 3:00 AM. I was admitted two hours later and released on 8/4 late in the afternoon. This time there were a lot of diagnosed issues Acute Pancreatitis among them. As a result I was on Intravenous therapy and no food for over 30 hours. My insurance supposedly allows you to go to whatever emergency room service in the area. The closest one is only 6 blocks from my house and is out of network. My insurance company is trying to deny coverage by indicating that my issues did not meet their standard for hospitalization and decided I could have been treated in a stepped down position. Needless to say I am appealing this as not only am I being billed for part of the hospital costs but all of the doctors who were assigned to me that were also out of network. Previously my insurance company did the same thing to Sloan Kettering which is in network. And at the same time refused to pay for a medication that we were hoping would stop the intestinal spasms that go along with the issue I am having. I have threatened the insurance company with filing complaints with two state insurance departments, the state where I am employed and the state where I live. I had to appeal each denial which was I believe six different insurance claims from the various providers.

  4. Thank you for this eye opener. I have been with the same neurology department for 20 years. In that time I have had 2 MDS’s: one for 1998-2013 and one the rest of the way. I have had PD for 20 years, am 73. I got an ANS DBS-stn since 2006 that I got on a Clinical Trial. All this just to show the problems I would have within the MDS bailiwick alone if this happened to me. 🙂 vic

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