Think you pay way too much for your monthly prescriptions? These amazingly expensive drugs may put things into perspective. Paying $10,000 or even $30,000 in annual prescriptions might be busting many peoples’ budgets, but those price tags pale in comparison to some that come in at over $400,000 for an annual treatment.
So why isn’t someone doing something about this obvious highway robbery? How could the FDA let evil pharmaceutical companies get away with this? The truth is that these are often lifesaving drugs that would not exist if it were not for their incredible cost. To be fair, pharmaceutical companies spend an amazing amount of money to make highly specialized drugs, often in the range of hundreds of millions of dollars. As such, the FDA supports this practice with the Orphan Drug Designation program, which encourages the development of drugs for rare diseases that, without special protections and benefits, might not ever be developed. While patients may be losing their shirts to the pharmaceutical companies, they are at the same time lucky not to lose their lives thanks to these drugs. Still, it is quite interesting to marvel at the sheer cost of annual treatment, and we’ve compiled a list of 11 mind-bogglingly expensive medicines being used to treat conditions in America right now.
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Soliris
Soliris has been made famous by Forbes as the world’s single most expensive drug, coming in at $409,500 a year. Soliris is used to treat paroxysmal nocturnal hemoglobinuria, a rare blood disease that affects 8,000 Americans. Soliris’ high price tag is largely due to $800 million investment and 15 years of research that Alexion Pharmaceuticals put into its development. Its 2009 sales were $295 million, and in 2010, Alexion pulled in $541 million for the drug. The high cost of Soliris is shocking, but it does seem to be worth every penny: studies show that Soliris use results in a 90% reduction in the most serious complication and cause of death from paroxysmal nocturnal hemoglobinuria.
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Elaprase
Patients who suffer from Hunter syndrome, an inherited disease caused by a lack of the enzyme iduronate sulfatase can find relief in the recombinant form of this enzyme, but at an incredibly high price of $375,000 each year. Some estimates put its annual cost as high as $657,000. Each vial of the drug is reported to cost $4,215 each, and in the U.S. alone, the 500 Americans who suffer from Hunter syndrome spent a combined $353 million on Elaprase in 2009.
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Naglazyme
Naglazyme is right behind Elaprase’s reported $375,000 price tag, coming in at the bargain price of just $365,000. This purified human enzyme is used to treat Maroteaux-Lamy syndrome, a rare genetic metabolic condition that typically presents itself in childhood through growth retardation in intellectually normal toddlers, and can cause tissue damage and mental retardation. The administration of the drug improves growth and joint movement, as well as range of motion and pain management.
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Cinryze
Patients with hereditary angioedema suffer from severe swelling, often in the face and airways, caused by low levels or improper function of the C1 inhibitor protein. This condition is hereditary, and there’s usually a family history, but often, deaths from hereditary angioedema go undiagnosed and reported as a sudden and premature death of a family member. This makes the condition relatively rare, and the treatment is quite expensive: an estimated $350,000 per year for Cinryze, an injectable man-made protein form of complement C1 esterase inhibitor. Cinryze maker Viropharma has mapped out yearly sales of the drug ranging from $95 million to as much as $350 million.
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Folotyn
Getting cancer is bad enough, but things just get even worse when the cost of treating such a severe disease begins to sink in. Patients with T-cell lymphoma typically turn to Folotyn when their cancer has not improved with treatment, or comes back. This drug works by killing cancer cells, and has a short course of treatment. Typically, patients will take the drug for about six weeks, but even in that short amount of time, the bill for this treatment is staggering — around $30,000 per month.
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ACTH
If you think $30,000 per month is insane, consider this: it’s a bargain compared to the approximate $115,000 per month families pay for ACTH. This drug is used to treat infantile spasms, seizures that often affect infants 4 to 6 months of age. Daily injections of ACTH are given for a period of weeks up to several months. At $23,000 per vial, patients often use 6 to 7 vials per course, and often go through two courses, which adds up to more than $300,000 in prescription drug bills. Unfortunately, ACTH is not FDA-approved to treat infantile spasms, and that means families may have trouble getting their insurance companies to pay for this mind-boggling bill.
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Myozyme
Developed by Genzyme, Myozyme costs up to $100,000 per year for child treatment, and about $300,000 per year for adults. Myozyme was created to treat a rare and often fatal disease, Pompe, which disables the heart and skeletal muscles. Often affecting infants, most of its sufferers die in the first year, and those who do survive typically need assistance like ventilators and wheelchairs. But thanks to Myozyme, some patients can do fairly well with the disease, able to speak, walk, and feed themselves. The drama behind creating such an expensive, yet lifesaving drug, was depicted in the movie Extraordinary Measures, sharing the race against time and profit motives experienced in the drug’s development.
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Arcalyst
Rare genetic conditions like Familial Cold Auto-inflammatory Syndrome and Muckle-Wells Syndrome are inflammatory disorders that cause the body to develop symptoms without a known cause, including virus and illnesses, and can affect the bones, joints, and major organs, leading to deafness, kidney impairment, and vision loss. These inherited conditions impair the immune systems of sufferers, but with Arcalyst, the symptoms associated with these syndromes can be treated and even prevented. It’s even been found to help prevent gout flares, but all of this helpful treatment comes at a very high cost: a reported $250,000 per year of treatment.
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Ceredase/Cerezyme
Patients with Gaucher disease, a condition that causes lumps of fat to build up in various places in the body, including the heart, brain, and spleen, suffer from the disease due to a missing enzyme. With Ceredase, made from human placentas, that enzyme can be replaced. But placentas don’t come cheap: the price of this drug is $150,000 per year. A new version, Cerezyme, came out in 1994, made with genetically engineered hamster cells, and was expected to be cheaper, but unfortunately for Gaucher disease sufferers, the price has actually gone up to $200,000 per year for the average patient. The drug has annual sales of more than a billion dollars.
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Fabrazyme
Like so many other terribly expensive drugs on this list, Fabrazyme replaces a necessary enzyme in the human body. Patients with Fabry disease suffer from the lack of or faulty enzyme that is needed to metabolize lipids. Without it, lipids are not effectively broken down, and can build to harmful levels in the nervous system, cardiovascular system, eyes, and kidneys, leading to cloudiness of the cornea, increased heart attack and stroke risk, as well as an enlarged heart and impaired kidneys. It’s not hard to understand why this condition is just downright harmful, and why it’s so important to treat. Using Fabrazyme, patients can make up for their enzyme deficiency, reducing deposits throughout the body. The treatment is reported to cost $200,000 for a year of treatment, that is, if you can get it: in 2009, Fabrazyme maker Genzyme’s plant was shut down due to contamination, and is just now resolving its manufacturing problems.
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Aldurazyme
Aldurazyme is used to treat a genetic enzyme condition, a far too common and expensive issue on this list. The condition in this case is Hurler syndrome, a metabolic disorder in which the lack of an enzyme keeps the body from breaking down certain sugars and proteins properly. Like Fabry disease, sugars and proteins not broken down will build up, leading to enlarged organs, breathing issues, decreased physical abilities, and more. With Aldurazyme, breathing and walking ability can be improved, but it does cost a pretty penny: $200,000 per year. The drug is usually given on a weekly basis in a clinic or hospital setting, which may incur additional costs as well.
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