Relentless

I went to the Dr. the other day b/c I was having chest pain. I know why. I was stressed to the max having to deal with all of Reagan’s super expensive medication that she was close to running out of. Oh the joys of switching insurance co’s (her insurance co. last year, went under). So we’re back with Humana. They are probably thinking, “not these guys again!!”


 

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Hi Humana! We’re baaaaack!!!

I’ll spare you the nitty gritty details, but the reason my heart started feeling like it was being attacked is b/c Reagan’s meds would be denied. After an initial (3 hour call) with the Humana pharmacy and their complete confidence in filling Reagan’s medications, no problem, I decided to proceed with them as our new pharmacy. But after many hours, days and three weeks of follow up, I was days away from being out of medication on multiple meds. The thing Humana forgot to mention is how ridiculously long the process would take and how three medications needed a Dr.’s prior authorization to be dispensed.  So while waiting, three medications were denied coverage, and then expedited appeals and peer reviews were required.

When we finally got to a point where things seemed to be on track, Reagan had one day left of one medication…it couldn’t be re-filled locally b/c CVS was showing that Humana filled it. But Humana couldn’t provide any information on when it would be shipped, I was only told, it’s in process somewhere in their warehouse. I imagined the millions of subscribers Humana might have and thought of that warehouse and wished I was able to go down the street to my local pharmacy. So after paying $25 for that medication days ago, if I needed it tomorrow, it would be $300 at CVS since it was too soon to refill. But alas, hours of phone time later, I had an override code, making that a $10 medication and Reagan not running out. #stressedtotheMAX.

This happened again with another, more expensive ($750) medication. She was almost out, I had paid…but it had not shipped and no one could tell me when it would ship. CVS couldn’t order it b/c the actual cost is $2500 and they needed approval from the CVS manager AND I had to confirm I would pay it. I needed another override code. Luckily the medicine arrived on the last day of medication we had.

So I didn’t really spare you the nitty gritty like I said.

Back to my Dr. appt and my chest pain (which turned out to be stress induced reflux). I told her I knew why it I had it, I was stressed, due to the above and she said, “Having a special needs child is relentless.”

Relentless.

Relentless.

That word has continued to stick with me. She’s right, it is relentless. There’s always a crucial battle to fight. Medications, therapy, formula, feeding supplies, measuring her food, giving her enough calories, but not too much protein. Managing sicknesses to avoid the hospital, juggling multiple dr. appts and blood draws and trying to sprinkle some fun in too. It’s hard.

So imagine, when I think the medication battle is over, and just this week I get a call from her case manager. “Hey Anne-Marie, it’s L the case manager…listen, another one of Reagan’s medications was denied. Try not to panic, we will do the expedited appeal, get authorization and then do another peer review, it can take up to 3 business days.”

[Siiiiiiiggggghhhhhh]

Another medication, down to the wire. Why is it always down the wire? (I’ve been working on this all month). And this medication retails for $16,000/month. And why are these meds so expensive? Can we just praise Jesus we’ve met our deductible in the first month of our insurance plan because of Rob’s cost/analysis spreadsheet genius-ness?

So, I just said “Ok” and sent one email to the Dr. office and left it up to God for the decision to be made in time.

I told God I can’t fight this fight. I have been fighting and crying and my body hurts. I don’t have the energy to fight or worry. I need you to fight for me. And my thoughts lately (from God) have been two words. PRAISE HIM. When trouble comes, praise Him, when it doesn’t make sense, praise Him. When you don’t understand how it will work out, praise Him. So that’s what I did. I hung up and I didn’t think about it again.

An hour and a half later, the medication was approved. Why didn’t I have this posture three weeks ago? I could have saved myself so much anxiety and stress! An hour and a half…I still can’t fathom it. The only thing that had changed from when I started this process to this one final medication was I fully trusted God.

That same day, I had taken my car to the dealer for a routine service. My car has 170,000 miles on it and ZERO warranty, it’s nine years old. I get a call from my service rep, “Hey AM, we need to talk about your car…there’s a repair that’s needed, it’s $2,500.” [GULP]. Again, my posture is to praise God and I ask him to please handle this…somehow.

Rob sends her an email and just asks if she can do any better on the price and we leave it at that. The following morning, we receive this:

Good Morning,

I wanted to give you good news first thing this morning. We contacted Lexus on your behalf. Due to the fact that you are a very loyal customer, Lexus has decided to cover the repair 100%! We are steadily working on it, but I wanted you to start out your morning on the right foot. I’ll let you know how the repair is going later today.

ARE. YOU. KIDDING. ME.

Covered. Paid for. And all I kept thinking was, God is relentless for me. God is continuously pursuing me, covering me and unrelenting in caring for me. And, he never tires in caring for my needs, Reagan’s needs or our family’s needs. What an amazing reminder I was given this week. God is in everything…in getting a medication approved in record time and in paying for my car repair. Relentless.

A Reagan Re-cap

We have some new visitors to the blog, FB and Instagram pages so I wanted to give a quick update and overview of why we’re doing these auctions and what GA-1 is and how Reagan has been affected.

Reagan has Glutaric Acidemia Type 1 (GA-1), a rare genetic disorder that was found on her newborn screening. GA-1 requires a strict diet and medication to help keep the amino acids Lysine and Tryptophan at lower levels. Reagan needs lower levels b/c her body does not metabolize these acids quickly and they can build up to harmful levels in her brain, causing seizures, brain damage or even death.

When people who metabolize normally get sick, their body breaks down proteins to fight infection…when people who have GA-1 get sick, their body also breaks down these proteins, unfortunately, the amino acids Lysine and Tryptophan don’t leave the body quickly, they stick around and build up. When Reagan gets sick, the protocol is a different formula recipe for sick days, and up to 8-12 additional fluid oz. a day to help flush things through. If Reagan can’t keep fluids down, we are hospital bound for IVs, Sugars, Glucose, etc. Her body needs something else to break down instead of the proteins she already has, like from her muscles.

The reason we are on our second auction for Reagan is b/c she did get sick, she did have seizures, brain damage and what the GA-1 community calls a metabolic crisis. The first illness Reagan had was RSV, it put us in the hospital for eight days. When we were discharged from the hospital, we were back in two days due to a metabolic crisis. Reagan collapsed and was essentially immobilized in a nanosecond. The scary thing is that even when the protocols are followed perfectly, nothing is 100% certain or preventative. Nothing in life is, really. And while Rob and I are so extremely grateful for the donations, for our friends who have set up these auctions and for all the money that’s been raised for Reagan, it reminds us of why we have to do this. I frequently think back to our hospital visits earlier this year. They were life changing moments.

Birthday buddies
First hospital visit for RSV. Spending my birthday in the hospital. Before her metabolic crisis.
Reagan hooked up to an EEG. There are about 50 wires under her cap
Second hospital visit, April 2014. Before we knew the results of Reagan’s MRI.

In the hospital, two of my closest girlfriends watched Reagan have a seizure. I recently spoke with my friend Laura and she revealed to me how it was the scariest thing she’d ever watched. She watched both Rob and I in fear, watching Reagan…she watched Reagan and feared for her life. We all did. We did not know that April 8th would be a line of demarcation in our lives, pre-crisis and post crisis.

The crisis took Reagan’s ability to crawl, walk, eat, swallow…it took away her muscle tone. We learned that muscle tone is not a strength or work out thing…it’s a neurological thing. Due to Reagan’s entire basal ganglia being damaged by her metabolic crisis, her motor control and muscle tone were lost. Rob and I had ZERO hope when we left the hospital. The neurologist told us Reagan would never smile, walk, talk, eat and that our job was to just “make her comfortable.” It was the most devastating time of our lives. Rob and I will NEVER forget the things we were told, how we felt…there’s even a particular smell that the hospital has and it reminds me of that time. The memories and feelings are forever seared onto us.

Due to Reagan’s brain damage, she also developed a movement disorder called Chorea, which causes involuntary movements, more commonly found in Huntington’s patients. Reagan is on medication for her movement disorder and she has greatly improved.

Reagan has improved in MANY areas. She’s cruising, crawling, standing and eating and drinking a little by mouth. That’s due to prayer, therapy and mediations. We pray A LOT! And we believe that God is doing his thing and being the Great Physician that he is…he’s not bound by earthly knowledge like that neurologist who said Reagan would never do any of these things. He made Reagan and he knows how she works. And God has given us hope to hold on to b/c we have been told over and over by the medical community that Reagan is making incredible strides and that she really shouldn’t be able to do a lot of what she is. The only explanation is G-O-D (are you with me?).

The auctions sprung from our insurance co. denying therapies after they approved them. Through social media, this blog and our friends hounding our insurance co. on Twitter and FB, our file was escalated and they found clear evidence that we were indeed told Reagan was to receive 272 therapies through the end of the year (not just 30…you need a bit more than 30 to recover from a traumatic brain injury).

{Read the insurance blogs here}

We’re quite certain an angel was working the day Reagan’s therapies were approved. But next year, they have let us know we will not have the amount of therapies that were approved this year and that’s why we’re raising money.

So now you’re up to speed on why we are having the auction…it starts TODAY here at 8 p.m. EST.

And unfortunately, Reagan is not feeling well today. She’s got a slight fever and is pretty congested. When she gets sick, it takes me back to the worst times of our life, spending those two weeks in the hospital for her metabolic crisis. The difference with her being sick now vs. then, is now she has a G-tube so we can get all the fluids we need to into her, as long as she keeps them down.

pool happy smile
I make G-tubes look GOOD!

If you could pray for Reagan to feel better, to not have another crisis or seizure we would be extremely grateful. And please check out the auction and bid…it’s for an amazing little girl. Thank you!

Make My Day!

Since the Dear Humana post, and email to their corporate relations blog post, I was contacted swiftly by Humana. First by customer service, and then by their social care department since I posted to social media.

In our minds, Rob and I had decided to stand still (especially after those waves) and allow God to fight for us.

But Moses told the people, “Don’t be afraid. Just stand still and watch the Lord rescue you today. The Egyptians you see today will never be seen again. The Lord himself will fight for you. Just stay calm. -Exodus 14:13-15

Jessica in the escalated customer service department knocked it out of the park. She contacted me Thursday late afternoon and said she was pulling every call, every note, speaking to every person at Humana who ever touched the file as well as to our providers, she also indicated that Humana was holding conference calls in regard to our case and that it was a top priority. Before we got off the phone on Thursday, she let me know she had compiled most the evidence and was still going through it, but that I’d likely have an answer on Friday.  I assume that she needed to comb through a somewhat sizable mound of stuff before arriving at an answer. I tried to remain confident in the outcome b/c I had evidence on my end, but I didn’t know what Humana would have.

On Friday, around 2 p.m. we had our answer. Humana could not find the call btw Dr. Ried and the originator of the authorization code, but they could see notes in their system that a call did happen on May 22, and there was overwhelming documentation in the notes of Humana’s authorization department that did confirm 288 total services (72 per discipline!) btw physical therapy, occupational therapy, speech therapy and feeding. Humana is honoring what they originally told us and our two providers on May 22 and May 28, as well as sending a letter to that effect, and agreeing to the 288 therapies until the end of the year!!

Thank you so much to everyone who shared our story and who told Humana to pay attention! Rob and I are so grateful for the massive army of Reagan warriors we have.

I don’t know what happens in other situations that may be similar to ours, I just felt like this had to be redeemed. We had to push, and you guys helped Humana notice. Always push for what is right and never, ever, ever give up!

Email to Humana Corporate Communications

Email address of corporate communications: enason@humana.com // found on this article filed under the tag Bruce Broussard, which is the Humana President.  


I posted this blog about our Humana experience in regards to my daughter’s therapy approvals and denials. HumanaHelp on Twitter reached out to me and requested information to help, as did Humana on FB, to which I replied to both immediately. No response was provided. I emailed Bruce Broussard via LinkedIn yesterday (no response, not surprised) and tweeted him this morning. There are some local news anchors pitching our story this morning and I wouldn’t be surprised if it was picked up. The details are clearly documented by multiple hospitals, Dr.’s, etc and the Humana response is deplorable. 

In just one day on FB there were 63 shares and 171 likes on our blog, not to mention, it got Humana’s attention, however no one has done anything. I will continue to blitz my daughter’s story until something is done with a favorable outcome…the outcome that was originally promised to my daughter.

Can you do anything? Can you put me in touch with someone who can?

Sincerely,
AM
tell my story.
tell my story.

Dear Humana

I know the posts have been intense lately…that’s b/c things are intense. I am hoping that this blog post will be the stick of dynamite needed to blow us out of our mine shaft, which is the term we’ve coined for our really tough season of life. This blog isn’t just about our victories, it’s about our struggles.

As a Realtor, my customers have called me a pit bull. If that’s how I am in business…how do you think I’ll be when it comes to my daughter? The term “Pit Bull” seems pretty inadequate.

Below is an email I just sent to our personal nurse at Humana, she is awesome by the way. A series of events have unfolded leading everyone working on Reagan’s care to believe her file has been tampered with. As of last week, Humana was saying that Reagan only had 72 additional therapies authorized, this was confirmed by our Humana nurse, by the rehab place, and by Nemours. However, now, they are saying that even those are denied. Meaning, that all the therapies we’ve had for Reagan in the months of June and July (totaling 81) will be denied. Read the below email I sent and then please share, post, send to a news outlet, I don’t care. Reagan will get the attention she needs and this story will be told.

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tell my story.

Subject: Tampering with Reagan Wurzel’s medical records

Holly,

Rob and I believe Humana has been tampering with our daughter’s records. I am requesting your IT/IS department to pull who has made alterations to our account, and what was made and on what day. An internal investigation needs to be opened into this issue. Here’s the chain of events:

May 22 Notes from Dr. Ried’s office

Dr Ried spoke with a reviewer who authorized 72 visits per specialty, PT, OT, ST, Feeding. until Sept 20,2014. 
The auth # is 064426015 and the phone number is 800-833-6917. I am requesting the call to be pulled, again.


May 28 – Florida Hospital Rehabilitation confirmation call
Elvira with Florida Hospital Rehabilitation called Humana and confirmed with “Jenny M” that the authorization code was indeed for 72 therapies per discipline. She called in the morning time, please pull the call. If the call on May 22nd didn’t happen or can’t be found, like Humana wants to continually say, then Elvira couldn’t have used the auth code to confirm the therapies with Jenny M.

July 22 – Florida Hospital Rehabilitation call
Elvira spoke with “Ziolata G” to check on Reagan’s account. Ziolata could only confirm 72 therapies for PT under the code 97110. The reference number for this call is 6302813623617. Please pull the call.

July 25 – letter from Humana (date on the letter is July 25th)
We receive a contractual denial letter from Humana stating that we are being denied therapies and that our policy only covers 30. My husband spoke with someone at Humana on July 29th who said this is the second time the letter has been sent, however we did not receive a previous letter and we have been looking for letters from Humana, and we scan every single document from Humana into our computer. The person at Humana that my husband spoke with said they could only see something from May 20. Even if that were true, all authorizations for therapies which were confirmed with two parties (Nemours and Dr. Ried’s office and Elvira with Florida Hospital Rehabilitation) came after that date.

Further points to consider which suggest record tampering:


  • A Sept. 20th date. Why would that date be provided by Humana? If we have a contractual agreement for 30 therapies, why would they provide a date of Sept. 20th to use them by? The reason: B/c it was not for our contractual agreement, it was for the 72/discipline.
  • Two providers on two separate dates confirmed with Humana the 72/discipline
  • Two months later, Elvira decides to inquire about Reagan’s account, and she confirms with Ziolata 72 for PT under the PT code
  • Now, there is no record of 72 for just PT, only 30 per our contract.

Today, my husband will be contacting the Florida Department of Insurance to file a formal complaint and to request an investigation be opened. Please put me in touch with whatever department handles this sort of thing, and please put me in touch with someone who is the head of the department. I am also requesting for a second time in this email that the IT/IS department look at Reagan’s account to see who changed what, and on what dates and times, b/c there is more than enough evidence to suggest a tampering with our daughter’s records.
While Humana may be audited (and uses this as an excuse to cover up their previous authorization) an audit of Humana is not of concern to us. What is of concern to us is what Humana said would be provided and confirmed by two separate providers. That is our concern. This series of events will not be placed on our shoulders to bear; if Humana made a mistake, if they made multiple mistakes, then Humana needs to bear that burden. Believe me when I say, this will get the attention it deserves one way or another.

Other facts to consider about our previous authorization and confirmation of additional therapies:


  • Page 22 of our policy defines what is considered outpatient therapies which is limited to 30 total visits per calendar year
  • Page 25-26 defines what is considered rehabilitation services, this does not limit us to 30 total visits per calendar year and does include PT, OT, Speech outlined
  • Reagan did not break her leg and require 30 therapies to help her walk again. What happened to Reagan altered her entire life and 30 therapies will not fully rehabilitate her, it won’t even come close. As I mentioned before, when Reagan left the hospital, she was not able to hold her head up on her own. Three months later, she was pulling herself to stand in her crib. The therapies are working, and we are not only requesting Humana to re-instate the 72/discipline, but to do so through the end of the year, since we have had to halt any further therapies until this is sorted out.

Feel free to forward this email along to anyone you see fit and know that I will be doing the same. Thank you for your hard work so far, and I look forward to working with you to resolve this.
Sincerely,
AM