Excuse me, what did you say? Pt. 5

"The service being requested is denied." These five words enrage me.  This post should really be titled "I hate insurance companies" because I really, really do. Nice people, lame policies, and a bunch of crap...insurance companies.

I am so over fighting to get insurance approvals for Natalie's care. One thing I have learned for sure in all of this is that obtaining a diagnosis for conditions like this is a crazy difficult and getting medical coverage for things that sick people need is an absolute battle. It is unacceptable and change needs to happen with both our insurance companies and the approach to patient care in this country.

After the Thanksgiving 2010 episode when everything changed for Natalie, we went to the parade of doctors in an effort to figure out what the heck was wrong with her. We yielded to the process, doctor after doctor and basically got no where. As I stated in an earlier post, the doctors pretty much said we don't know what is wrong or what to do, so we will just do nothing for now and see how bad it really gets. There were no further referrals brought up. They gave up.

I believe part of the problem is the fact that the symptoms with this condition are pretty random, affecting different parts of the body,  so you find yourself going to a myriad of doctors with no real case manager to tie it all together. Everyone is thinking about their piece and ruling things out, but no one is looking at the bigger picture. And as I explained before, the doctors who are truly knowledgeable about this condition are few and far between.

Because of their inability to think outside the box or connect the dots, we were forced to take matters into our own hands. After doing massive amounts of research on the Internet, I finally came across an article on cyclic vomiting syndrome and realized that the author was describing Natalie perfectly. Of course, just as in every medical situation Natalie has ever had, her presentation was atypical of the cyclic vomiting syndrome cases her neurologist had seen so he wasn't 100% board with that diagnosis. He did put her on a medicine (that I hated) which did little to improve her situation but came with horrible side effects. He was satisfied with her progress, but we were not.

With no where else to turn in our medical plan, I did some further research and found a doctor at Children's Hospital of LA who specialized in cyclic vomiting syndrome. I sent this man a 5 page single spaced email detailing my daughter's journey and highlighting key issues she has had since infancy at 10:30 on a Saturday night. I received a response within 30 minutes saying he wanted her on his caseload. And so began our care from Dr. Boles.  With this expertise, he was able to diagnose her, educated us, and create a treatment plan in our first appointment which was about 4 hours long. He is the one who restored my daughter's confidence in doctors. He is the doctor who I can email at any time and have a response back within a couple of hours. He is also the person that educated us on the fact that Natalie's cyclic vomiting syndrome is but a symptom of the larger Mitochondrial issue. He has taught us so much and provided amazing support for us.

The problem is he is not covered by our insurance. When we went to see him, it was backed by referrals from both our primary care doctor and the genetics/metabolic doctor Natalie had within network. It's not like I was/am some psycho mom without justification for seeing this doctor. Our local doctors (including the only doctor in Sacramento who handles medical conditions like Natalie's and is highly reputable) lobbied on our behalf for months stating that we needed to have a doctor with more expertise. The request was denied and so began the insurance battle that has raged for over a year now.  We had to pay out of pocket for everything thus far, with the most significant cost being the $3000 for the initial appointment and all it entailed (dietitian, social worker, genetic counselor, doctor, genetic mapping, etc).

We have jumped through every hoop and followed every process like a darn circus tiger jumping through a fire hoop. The last denial required us to go and see a bay area doctor for a consult. In the denial, it CLEARLY stated if he said we should continue to see Dr. Boles, they would approve it. We did this August 6th and left this doctor's office with his recommendation that we continue with Dr. Boles AND an authorization request for genetic testing (which both her and Dr. Boles feel is vital). This doctor realized that Natalie needed a higher level of expertise than he could provide and also would benefit from continuity of care that had been established with Dr. Boles. Today, I received a denial AGAIN even though we got what was required. They also did not authorize the $4300.00 genetic testing that we got done and are currently awaiting results on.  Insurance commission, here I come.

I get so angry at the fact that we are actually asking for very little when it comes to seeing Dr. Boles from a money perspective. We see him twice a year  - everything else is done remotely via email/phone. This would not cost insurance more than $1,000/year. Of the gazillion things Natalie takes each day, only two of them are covered by insurance. The rest are out of pocket adding up to quite a bit of money each month.

My favorite item that came in our previous denial for coverage is a copy of an email between the medical director and case worker at the medical group. It was clearly placed in the envelope in error and shows how little they even cared to look at my daughter's case. It shows a five word description of her claim and a link to the file. The timestamps reveal that exactly one minute after the medical director received the emailed claim, he denied it. He didn't even look at her file. When the case manager questions him (one minute later) and makes sure he is aware of the doctors backing the request, he says to deny it once again. The best quote of the email exchange is "Deny and redirect. Let them fight it out with HealthNet". Pretty fantastic, no? Nothing says our kid is a number like that. 

If it wasn't for Dr. Boles, we wouldn't even have a diagnosis or treatment plan, and I guarantee you that insurance would be paying out a ton more for all of the hospital stays that would be taking place. He is the reason her situation has been able to be as good as it has been. I just want my kid to be given the proper care she needs and he does this for us.

Part of the problem again stems from the lack of awareness about Mitochondrial Disease. The insurance companies do not understand this condition and why such expertise is needed to manage it effectively. Families have challenges getting the genetic testing that will provide much needed information to assist doctors with treatment AND help determine if other family members (or future offspring) are likely to be affected. Because there are a limited number of doctors with true expertise, families often do have to venture out on their own providing a huge financial burden. Many have to travel out of state to see the doctors required.

And...the "mito cocktail" inclusions are expensive and are not covered by insurance. This all adds up for families, especially those that are less fortunate. There have been petitions urging Congress to include mitochondrial disorders and related supplements in important legislation mandating coverage of medical foods (supplements, enzymes, vitamins) for inborn errors of metabolism. In the petitions, the argument is made that they should be regarded as equal to, and covered to the same extent as, medications critical to life - such as insulin for diabetes. It doesn't appear that these petitions have been all that effective. The costs for families range, but the average is around $250/month for these items. 

While we need to make some changes to healthcare in general to address these insurance issues, really it boils down to the need for MORE AWARENESS.  It's pretty hard to argue your case when the person on the other end is like, "Mito what?  I have never heard of that." Spread the word people!