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    • #26261
      Colleen Steele
      Keymaster

      My husband’s insurance changed in May. Prior to transitioning my son to adult care at a new medical center I called them and was assured that Cullen will be covered there. Not even a month later, after a hospital stay, insurance tells me he will not be covered at that facility after August 1st.

      I’m still fighting it but it’s not looking promising. They will cover the hospital in CA and that is where he will have to seek care again if they don’t make an exception for his care in WA, which is where we live. I explained that even if we switch back to the hospital in CA he will still need doctors in WA willing to coordinate with Stanford about emergencies and basic care.

      Has anyone experienced this type of problem – fought and won? My dad has suggested calling the Bureau of Banking and Insurance for help. Has anyone every done that? We are also looking into military insurance to see if they can help.

      What has been your biggest insurance battle?

    • #26265
      Jen Cueva
      Moderator

      Oh no, @colleensteele, I certainly wish I could help in some way. I know how much it took for you to prepare and change to WA already! It is horrible the hoops some have to jump through to get the care that they need and pay for.

      The only time I had was the worst was the story that I shared a few weeks ago about my PH doctor. It was overwhelming, draining, frustrating, and nothing I would wish on anyone. This sounds even more complicated as Cullen was transitioning to adult care, too. I do not think the insurance understands the simple things. You will need to have local doctors who know Cullen and can work with those out of state if they cannot approve this.

      This is just insane that they did not tell you until after the first appointments and hospitalization! My heart aches for you and your family as you struggle with this. I know that PHA offered some excellent resources with insurance years ago. I am unsure what changes have been made. But, I am sharing one of the links.

      In the meantime, LMK if I can be of any help. I will say a few extra prayers and sending you hugs.

    • #26268
      Dawn
      Participant

      Hi @colleensteele. So sorry this insurance change isn’t going smoothly for you. The biggest battle I’ve had with insurance was when I was in therapy at the worst of my depression. My employer at the time had minimal health insurance coverage, and the coverage for mental health care was the absolute minimum they could do. It took me a number of months, and a letter from my therapist, but they finally increased the number of visits allowed annually. Once I got them to ok the change for that year they didn’t challenge it in future years because the exception had been made, and the precedent had been set.

      The suggestions I can think of would be involving Cullen’s doctors if they are willing to advocate for Cullen. Also, check your state’s laws as far as insurance coverage regulations for Cullen’s particular needs. Find other cases similar to what you’re faced with that were successful in getting the coverage sought. Many employers provide health advocate services through a third party too. Sometimes I’ve heard of people having success with an insurance issue when they got involvement from their state/local political representatives.

      Not sure any of those will help, or are anything you haven’t already thought of, Colleen, but I wish you luck with this. The biggest thing I found was tenacity, and going as far up the insurance contact hierarchy as needed to get to the right person.

    • #26280
      Colleen Steele
      Keymaster

      Thank you for your support @dawnt and @jenc. I’ve been told by doctors that this issue has been forwarded to the proper channels at the UW. I’m not sure what if anything they can do but at least the issue has been brought to their attention. Doctors from both his old and new team have offered their assistance in any way they can.

      Right now I’m in wait mode. I’m afraid to make too much noise or research other hospitals and possibly mess up the efforts other people are making to help. I can’t wait past next week though. I need to make sure Cullen has doctors past August 1st.

      Thank you Dawn for your advice. Normally I hate confrontation but I’m in mamma bear mode, so watch out!

    • #26282
      V.R. Peterson
      Participant

      I’m so sorry you’re experiencing this, @colleensteele. About 4 years ago, my son went to the ER to our small local hospital because of A-fib and a racing heart rate. The insurance covered that ER bill. However, that hospital wasn’t equipped to handle my son’s health issued so they transferred him to a larger hospital by ambulance. The hospital refused to cover that hospital stay because the larger hospital that was equipped to deal with his health issues was not in-network. My son is still paying off the bill on that.

    • #26288
      Jen Cueva
      Moderator

      Oh @colleensteele, I can bet those mama bear claws have been out as you advocate for Cullen. It is horrible that anyone has to fight this much just to get the care needed and close to home. I am hoping and praying that you have some better news ASAP.

      Cullen is fortunate to have such strong and will-powered moms fighting for his health! Despite his calm and quietness, I know he appreciates you much more than you will ever realize! Hugs to you and keep us posted.

    • #26289
      Jen Cueva
      Moderator

      That is unfortunate, @mamabear007. I had a 911 bill that I was told was uncovered a few years back. I said them my hubby called 911, and they came. He did not have time to ask if they were “in-network.” Have y’all heard of the ambulance ride not being in-network? I refused to pay, and eventually, my insurance did cover it.

      I am sorry that your son has to pay on this bill when they transferred home. Once they transferred me, they did not want to cover the cost of the ambulance there either. But at that time, my hubby asked if he could drive me since it was just downtown and was told now. We are still fighting that one. Insane the shenanigans we deal with.

      I understand but still wish no one had to endure this as we have so much already to deal with.

    • #26296
      V.R. Peterson
      Participant

      @jenc, the insurance covered the ambulance cost and the the first hospital bill. They didn’t cover the hospital stay in the second hospital. It was about a week in the cardiac wing. Utah state law requires health insurance companies to cover emergencies (which it most definitely was), but they refused.

    • #26300
      Colleen Steele
      Keymaster

      Thank you @jenc, @mamabear007 and @dawnt for your support! I’m sorry to hear but sadly, not surprised to hear about the struggles you have all faced with insurance too. This recent battle with them I think was nearing the tipping point of what I can handle.

      By some miracle, it has all worked out! Both the hospital and the insurance case worker updated me that the two worked things out and contracts have been re-signed. This is not just for Cullen’s benefit but all of those using this insurance. What I hoped but wasn’t on my breath on was that approval would be permanent and not temporary. They have assured us that this has been resolved for now and the future. I actually cried and then crashed because I had been so stressed. Most of the weekend I slept. That’s how I recover from intense stress – what about you?

    • #26301
      V.R. Peterson
      Participant

      @colleensteele, that’s wonderful the hospital and insurance signed a new contract! I’m celebrating right along with you!

    • #26304
      Jen Cueva
      Moderator

      @colleensteele, as you know, I am so happy that this all ended on a positive note. I know this not without a ton of hard work and lost sleep on your part. I am happy that you rested well. I am hopeful that you could relax a bit more and enjoy your weekend once you caught up on rest! I love you, and Cullen has one fierce mama bear on his side! Well done!

    • #26307
      Colleen Steele
      Keymaster

      Thank you @jenc! Any progress with insurance on your end? How are you feeling?

    • #26312
      Colleen Steele
      Keymaster

      Thank you @mamabear007! It really wasn’t looking promising. I was shocked when told that contracts were signed. Thank you for your support. I really appreciate it!

    • #26314
      Dawn
      Participant

      @colleensteele, what great news!! I’m so happy for you & Cullen. I go for the sleeping when stress wipes me out too. I’m guessing you were probably exhausted getting through such a trying time. What a relief!

    • #26316
      Jen Cueva
      Moderator

      Thanks, @colleensteele. I am doing OK, thanks. I am planning to have a virtual visit with Neurology later this week. I am still awaiting approval for testing, but they are waiting for my doctor to add a diagnosis, then it should be OK. I also am waiting as my PH doc wants the Neuro opinion first before he does the test.

      I am so happy that this all worked out as I know how difficult this has been for you. It still makes me smile, and my mom heart happy each time I think of this success! You truly are a gift to Cullen and us all. Thank you.

    • #26328
      Colleen Steele
      Keymaster

      @jenc keep us updated. You are on my mind all the time.

    • #26391
      Jen Cueva
      Moderator

      Hi @colleensteele, I guess that I spoke too soon. I DID have a virtual appointment with the neurologist on Thursday. It went really well, and I was feeling hopeful. He scheduled a test the following day. I awoke at 6 AM and had no coffee to prepare for this test. This is too early for me already, hehe.

      We were told 2 hours before the appointment that the insurance is not out of network. Crazy, as I checked with them on Tuesday and gave them my information again from my insurance card. The gurl was friendly, and I waited as she ran it through. I wanted to double-check before having that first appointment. She said yes and told me it was covered at 100% as I have met my max out of pocket.

      As y’all can imagine, my Friday went downhill. I then ended up canceling the procedure to talk with the office manager and Cigna again. I was still on the phone at 5 PM, Friday afternoon. No nap, thank God, I did have some coffee after that 11:30 appt was canceled. Never a dull moment, right?

      I am not giving up! I have some calls with that office and my case manager tomorrow. I am hoping and praying that we can resolve this. This Neuro was very thorough. I would love for him to do the testing that he needs to help me.

      Sorry for my long vent! I know that you and our members can relate, unfortunately. It is horrible what we have to fight- Hugs to y’all!

    • #26450
      Colleen Steele
      Keymaster

      For what it’s worth, here is this week’s column. It’s about my recent battle with health insurance.

      The Power of Persistence When Battling Health Insurance

    • #26451
      V.R. Peterson
      Participant

      @colleensteele, the article is excellent!

    • #26462
      Colleen Steele
      Keymaster

      Thank you so much @mamabear007!

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