What I accomplished and learned today (Thursday)

I’ve done so much this morning, but I have so many other things in my head that need to be done too. My head is just spinning! I don’t think this has all soaked in yet, which is probably a good thing.

1] Talk to Aetna, our insurance company this morning. They are going to assign me a caseworker for Hannah so I can direct all of my questions to one person. The member services person I talked to ‘thinks’ that the Cerezyme treatment would be considered a medical expense as opposed to a pharmacy expense because it is done either in a hospital or an outpatient clinic since it is an IV-based infusion. But she isn’t sure. Hence, the assignment to a caseworker. That would be awesome, as we would only have to cover 10% of the cost. But I’m not getting my hopes up, because I’ve been reading about how some insurance companies find ways not to cover this kind of treatment.

2] Talked to our Early Intervention service coordinator. Hannah is going to start developmental therapy next Wednesday, and we will come up with a game plan for how often and what then.

3] Dr. W., the Gaucher’s specialist back east who emailed with me about 5 times yesterday (God bless him!) told me to find out if Hannah has a specific gene mutation (“If it is N370S, it is very, very unlikely that Hannah has type 3 disease despite her presentation early in life“). Then Dr. B., our amazing pediatrician (couldn’t ask for better), took it upon himself to look it up in the database (since I haven’t heard back from our genetics doctor since yesterday) and found the test results and forwarded them to Dr. W. Hopefully we’ll get an answer soon!

4] Found out that Dr. S., the expert that we were referred to, JUST joined Aetna’s network on 1/1/09! He is covered by our insurance. How amazing is that! We have an appointment with him scheduled from February 12th. It is about a 3-1/2 hour drive, but it will be so worth it.

5] Found out that the Cerezyme treatment is based on weight. So since she is just a baby, it shouldn’t cost anywhere near as much as it would if she was an older child or an adult. So if the insurance doesn’t cover it, that will help at least.

6] Set up an appointment with SSI (Supplemental Security Income) for next week to see if Hannah qualifies for benefits. We could use all the help we can get with these medical bills of hers. But I’ve been hearing that they reject almost 70% of the people who apply and a small percentage of that do get it after an appeal. The lady on the phone was very nice, as Hannah’s situation does “prequalify” us for an appointment. We’ll see.

7] Type 3 is so rare!! OMG, I am having such a difficult time finding parents with type 3 young kids. As a matter of fact, I’ve only found two so far that had infants diagnosed with type 3. I know Gaucher’s disease in general is rare, but apparently type 3 is the rarest of the rare! I’m not giving up though. I’m working to make some contacts through a couple of Gaucher’s organizations.

8] Ordered Hannah’s birth certificates. Two copies. $22 each! I remember when they were only $10 each back in California. I ordered two copies because we are going to need it for the SSI meeting and probably for other programs as well.

I’m probably missing something, but I’ll update later.