3 posts tagged “Health insurance”

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

Posted July 10th, 2017 by

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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Loud and clear: The patient voice on the ACA

Posted March 2nd, 2017 by

Have you had chance to check out that poll where 2,000+ PatientsLikeMe members shared their views on the Affordable Care Act (“Obamacare”)? It was the largest patient poll on potential changes to the health care law, and several media outlets are now listening up.

A recent CNBC article called “The human side of the Obamacare debate” featured quotes from those who took part in the poll. Here’s a glimpse of the patient perspective:

“Raising the age of dependent coverage to age 26 was a lifesaver for our daughter. ACA is not perfect as there are stories of those who’ve hated it and it cost them more money in the long run, but there are just as many positive stories of all the people the ACA helped. Health care in this country is big business and complicated. The ACA didn’t uncomplicate it, but it helped many more Americans have affordable health insurance. It is a mistake to just repeal it without anything to take its place.”

  • Jeanne of Jackson, WI, living with fibromyalgia, depression, generalized anxiety disorder and primary biliary cirrhosis

 

ACA patient poll by PatientsLikeMe

2,197 PatientsLikeMe members weighed in on the ACA.

 

“I lost my health insurance because my husband was laid off. Then, I had Medicaid for five months, but that was taken away because my husband made ‘too much’ on unemployment which wasn’t much. This doesn’t take into account our other bills like keeping a roof over our heads. I am in the middle of a disability case. I can’t afford insurance. If I start having seizures again from my [traumatic brain injury] or other issues, I am screwed financially. I don’t have any savings; I can’t work. I am borrowing money from credit cards just to make ends meet.

And to insist that I have insurance (the lowest quote I received was $270 per month) with no financial way of paying and getting fined because of that is an insult. I have been paying into a system that is supposed to help when I need it, but no. This has hurt me and so many others.”

  • Shawn, Lakewood, CO, living with severe traumatic brain injury

Thanks again to all who participated and helped elevate the patient point of view. Let’s keep the dialogue going, together.

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