We will be using it as a secondary insurance, but hopefully this will also give us some more flexibility with our nursing hours.

It was a bit of a reality check though, because I read the part where it says “The child(ren) must have a level of care that would be provided in a hospital, nursing facility or intermediate care facility for the mentally retarded.”   I keep thinking — that is not my Hannah!!  (Goes into my hatred for the term “mentally retarded,” but that is a rant for another day.

This has been a huge weight that has been lifted off our shoulders.  Medical security ‘just in case.”   Yes, we will always have to worry about budget cuts affecting this, but for now, we have a medical insurance security blanket!

On an aside, I found this great article on who Katie Beckett was…very enlightening!

Nolo.com has some great information on what exactly a “special needs trust” is.  

Use a trust to leave money to a disabled loved one — without jeopardizing government benefits.

If you want to leave money or property upon your death to someone with a disability, you must plan carefully. Otherwise, you could jeopardize your loved one’s ability to receive Supplemental Security Income (SSI) and Medicaid benefits. By setting up a “special needs trust” in your will, you can avoid some of these problems.

Owning a house, a car, furnishings, and normal personal effects does not affect eligibility for SSI or Medicaid. But other assets, including cash in the bank, will disqualify your loved one from benefits. For example, if you leave your loved one $10,000 in cash, he or she won’t be able to get SSI or Medicaid.

How a Special Needs Trust Can Help

A way around losing eligibility for SSI or Medicaid is to create what’s called a “special needs trust” in your will or living trust. Instead of leaving property directly to your loved one, you leave it to the special needs trust.

You also choose someone to serve as trustee, who will have complete discretion over the trust property and will be in charge of spending money on your loved one’s behalf. Because your loved one will have no control over the money, SSI and Medicaid administrators will ignore the trust property for program eligibility purposes. The trust ends when it’s no longer needed — commonly, at the beneficiary’s death or when the trust funds have all been spent.

How Trust Funds Can Be Spent

The trustee can’t give money directly to your loved one — that could interfere with eligibility for SSI and Medicaid. But the trustee can spend trust assets to buy a wide variety of goods and services for your loved one. Special needs trust funds are commonly used to pay for personal care attendants, vacations, home furnishings, out-of-pocket medical and dental expenses, education, recreation, vehicles, and physical rehabilitation.

I wrote a letter to Senators John Cornyn and Kay Bailey Hutchison, our Texas senators, about our situation last week.  I ended the letter asking for help with that issue as well as “In addition to requesting assistance from your office to obtain eligibility, I would like to work with your office to alter the eligibility requirements for individuals with severe chronic medical issues to obtain SSI benefits.“

I also wrote our local congressman, Kevin Brady.  Kevin Brady’s office sent me an “I’m sorry but that is the way it is” letter with a phone number to call the state senator to see if there are other assistance programs available.  Not quite what I was looking for. 

Today, less than a week later, I received a letter back from Senator Cornyn’s office:

“Thank you for your recent correspondence and for bringing this matter to my attention.  The decisions of the federal agencies have a direct impact on the lives of many Texans.  For that reason, I understand the iportance of this issue to you.  As your United States Senator, I am happy to offer my assistance.

However, the Privacy Act of 1974 requires me to have your written authorization before obtaining personal information from a federal agency on your behalf.  If you would like for me to proceed with a congressional inquiry, please complete, sign, and return the enclosed form to my office…It is a priviledge to represent you in the United States Senate.  I will await your response.”

How awesome is this!   I don’t know how a “congressional inquiry” proceeds and what exactly it means, but it has to mean something!

After talking to a few long-time friends about this, they agreed that these friends were looking out for us, probably when we weren’t looking out for ourselves.  

It made me really think over the last couple of days (like I haven’t been doing that enough lately — see what happens when I slow down?) about our financial situation.  Yes, it sucks.  Now that I am no longer bringing in an income, we are living off our savings to make up for that income.  I know it won’t last forever. 

I have NO problem with the fundraiser and raising money for GD23 research, because that is the only shot we have of saving Hannah’s life.  Yet, I don’t want to be considered a personal charity case, either.  I don’t know why it is so hard for me to accept people wanting to help us personally like that.  But are we being irresponsible parents by trying so hard to raise money for research and not thinking of ourselves and our family?  Yet, if we do accept money for ourselves and we lose Hannah, I’m not sure I could handle the guilt of thinking that we didn’t try everything we could to save her.  Then what about Ethan and Abby’s future if we are forced into a more serious financial situation? 

My brain hurts.  I wish I knew what to do, what was the right answer.   Objectively, if it was someone else’s situation, I would tell them they had to protect their family first.  But in my heart, I don’t know if I could handle the guilt if we lose Hannah because we didn’t try everything we could.

Cerezyme – over $3300
Infusion Center – over $10,800

1. Consultation with the hematologist/oncologist regarding a possible bone marrow transplant for Hannah.  When the lady called me to schedule the consult that Dr. G., the genetics doctor, recommended, I was taken aback.  From everything I’ve read about Gaucher’s Disease, a bone marrow transplant is the last line of defense when the Cerezyme (first line) and the Miglustat (second line) do not work.  Even then, the risks versus benefits are not in favor, as it doesn’t always work.  I made it clear to the lady who made the appointment that we weren’t even considering a bone marrow transplant at this point, and she apparently knew this.  So, we are meeting this doctor on the 2nd of Febrary after meeting with the Jewish Family Services to see what they have available for us.
2. Scheduling her first Cerezyme treatment.  So it looks like they are shooting for February 6th.  We went from doing one treatment at the Infusion Clinic downtown (to watch for side effects) with subsequent pediatric Home Health visits to now doing more treatments there and no Home Health yet.  I’m not sure why.  Even though it will be a pain to drive every 2 weeks, I’m not that upset only because she will be in a more controlled environment just in case she experiences side effects or something.
3. Medical Records scramble.  I’m still trying to get the medical records from the clinic downtown for Dr. S., the Gaucher’s specialist, next month.  Supposedly, at least I was told this, they will be worked on this Monday.  I sent them in on January 9th.   I’m sure I’ll have to follow up on this too.
4. The Project Charity.  I talked with Nicole who is heading up The Project Charity, an organization that is just what I needed when I first started learning that Hannah had a very rare disease.  I’m going to work with her on a community-based and interactive portion of their site to help other families, especially those that don’t have access to experienced medical professionals in their area.   She has fantastic ideas for the future of this program, big time, and I am so excited to be a part of it and get involved.
5. Got my eye appointment in finally.  I had to postpone it three times because of various appointments for Hannah that popped up the same time I happened to schedule this.  Fortunately, my eyes are still healthy, and my contact prescription hasn’t changed (in about 15 years!).  Note to self…order contacts!
6. I picked Little Girl A up at 2:15 PM today instead of 4:30 PM at school.  She was already at the window waving at me when I drove up.  You could see the huge grin on her face.  Her teacher told me that she had been saying all day that I was going to pick her up early.  While she was getting her stuff ready, I said three different times that I won’t do this again and that she will have to stay the whole day, and she said “she knows.”  We will see.
7. Fighting with the insurance company/laboratory about this dang $400+ lab bill from three months ago.  The doctor or laboratory coded it wrong, and the insurance company won’t cover it.  Trying to get someone to fix this for us is a nightmare.   Everyone passes it off to someone else.  Now, we got a deliquency notice, and my insurance rep said that basically we should pay it now (the lab bill) instead of waiting until it hits our credit.  Great.

Other than that, nothing much else happened today!

They don’t care that a substantial portion of our income will now be going to go to medical treatments even after the insurance company pays what they said they will! Even if my husband earned $1000 less a month, we would only qualify for $84 a month. Basically, unless you are living just above the poverty level with our family of five, you don’t qualify — regardless of your needs!

I asked if we could appeal their decision. She said “of course,” but it would continue to be denied because of our income. If we HAD the income they think we have, then we wouldn’t need the assistance!

What pisses me off, and I am pissed with “the system,” is that why do I have to pay for something that I can’t benefit from when I truly need the help? Seriously, that is just not right.

Apparently it isn’t as straight forward as 90%/10% (we cover 10%) and a yearly max-out-of-pocket like our coverage says. Basically, Aetna, our doctor’s hospital group, and Genzyme (who make the cerezyme) are going to “negotiate” a payment, and then it has to go to the Aetna review board for approval. I would love to be a fly on that wall! It is my understanding that once the review board goes through and comes up with what Aetna will pay and what we are responsible for, then I’ll hear back. Many people I’ve talked to said that they have had to appeal the decision, some with favorable outcomes and some with no change.

The only positive so far is that Aetna already has active codes for the ERT (enzyme replacement therapy) and the process for it, so Hannah won’t have to go through a precertification process before getting started. It should save us some time.

I’m hoping to hear back from our Genzyme rep who is working with Aetna and our doctors. Thank goodness for her… she at least is getting us answers and a lot faster than I could!

How are we going to afford all of this even IF the insurance will cover 90%? That is still $20,000 a year just for the drug not including the bills for the doctors, clinics, therapies, and other procedures (if she needs a bone marrow transplant). Some articles even put it at up to $350,000 a year for adults.

The average can be as high as $200 per kg every two weeks. Hannah already weighs 7 kg. That is $1400 every two weeks, and she is not even 6 months old. Will this be a problem for her to get insurance in the future?

~~~~~~~~~~~~~~~~~~~

Cashing in on ‘orphans’ (CNN)
Pharmaceutical companies like Genzyme reap huge profits off treatments for obscure diseases.

NEW YORK (CNNMoney.com) — Some of the most successful blockbuster drugs in the world treat diseases that most people have never heard of. They’re called orphan drugs, and the government doles out big tax breaks to companies that deliver them. Even without the tax incentives, plenty of biotechs have found ways to profit big off drugs for rare diseases. How do they do it? By charging gobs of money.

Cerezyme, Genzyme’s Gaucher drug, is one of the world’s most expensive drugs. An annual supply can cost $200,000. About 5,000 patients take Cerezyme, according to company spokesman Dan Quinn, who said that’s at least half the world population for Gaucher patients. “Genzyme charges a higher price per patient because patients need the drug and there’s no other enzyme replacement therapy out there [that's] approved,” said Biren Amin, analyst for Stanford Financial Group.

~~~~~~~~~~~~~~~~~~~

Cutting Dosage of Costly Drug Spurs a Debate (NY Times)
When a drug can cost more than $300,000 a year, the right dose becomes a matter of public debate.

The drug in question, Cerezyme, is used to treat a rare inherited enzyme deficiency called Gaucher disease. Some experts say that for most patients, as little as one-fourth the standard top dose would work, saving the health care system more than $200,000 a year per Gaucher patient.

With Cerezyme, which is made by Genzyme, the profits are sizable. Gaucher disease, which can have complications like ruined joints, is rare; only about 1,500 people in the United States are on the drug and about 5,000 worldwide. Sales of Cerezyme totaled $1.1 billion last year, making it a blockbuster by industry standards.

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.