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.
I would again encourage you to have a donations button because there are many of us out there that can afford to donate a few dollars. With the high costs of her treatment, it is not unreasonable or greedy to have a donations button. No one has to donate if they don’t want to – and if you really feel the need you can give them a shout out on your blog.
I am so impressed with how you have taken such an obstacle and utlilized the internet as it should be to give you knowledge and strength to fight this battle.
Is it me or does that seem criminal to charge such high prices to people who’s lives depend on such a drug.
I’m so sorry you’re having to go through all of this! I cannot imagine! Do you live in the US? If so, maybe it wouldn’t hurt to contact your congressman about this ridiculous cost for lifesaving drugs. You could even ask your fellow blog-readers to do the same. Maybe it would be a step in the right direction?
Hello, my name is Jaroslaw, I am 26 years old, come polish, a number of years, I am taking Cerezyme, and always had medical costs reimbursed by the state. years since 2009 have been suspended treatment and I do not know if my country I will still pay the costs, if not to me can not afford treatment.