Insurance coverage, round 1

I say “round 1″ because after everything I’ve read, this is going to be a long process to get Hannah covered and to find out exactly what Aetna will end up covering.

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!

Cerezyme…why so expensive?

Cerezyme is the enzyme replacement therapy that Hannah is going to start hopefully soon. I’ve been doing some research on it, and I have found quite a few opinions on blogs and the news about it. Pretty disheartening knowing that she is going to have to be on this for the rest of her life.

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?

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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.

Consider Genzyme, one of the more prolific producers of orphan drugs, also known as “orphans.” The Cambridge, Mass.-based biotech has three on the market, including a $1 billion-a-year treatment for a debilitating, hereditary disease called Gaucher. Gaucher disease results from a specific enzyme deficiency in the body.

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.

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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.

“It is economic malpractice to give a much higher dose of an expensive drug than is required,” said Dr. Ernest Beutler, an authority on Gaucher disease at the Scripps Research Institute.

Some other Gaucher specialists argue otherwise, saying that skimping on the medicine could endanger patients.

But all sides agree on one thing. “Nobody would even be wasting their time talking about this if it were a cheap drug,” said Dr. Neal J. Weinreb, a Coral Springs, Fla., specialist in Gaucher (pronounced go-SHAY).

In that sense, the dispute over Cerezyme could be a sign of the increased scrutiny that dosing will receive as drugs become more expensive. Pharmaceutical companies have faced complaints for years over prices, but now they might have to defuse efforts to use less of their drugs to cut costs, and to rebut accusations that doses are inflated to bolster profits.

There are also economic and social questions about how much burden taxpayers and co-workers should be expected to bear; ultra-expensive drugs, especially in full doses, can raise the cost of everyone’s insurance.

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.

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.

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