A new gene therapy has been approved by the FDA. It is called Luxturna and cures inherited blindness. As good as it sounds, it will set you back $850,000 making it one of the most expensive treatments in the world. Spark Therapeutics is that company that released the drug and had initially planned to sell it for a million dollars.
Health insurers raised their concerns on such a steep price and they eventually dropped it down to $850,000. This still makes Luxturna significantly more expensive than almost every other medicine available globally. This is the first gene therapy that treats an inherited condition. It is estimated that the rare form of inherited blindness it cures affect less than 2,00 people in the US.
Thi is a one-time injection that uses a virus to deliver a replacement gene into the retinal tissue of the people born with the type of inherited blindness. One injection cost $425,000 and you need one for each eye. “We wanted to balance the value and the affordability concerns with a responsible price that would ensure access to patients,” said Spark Therapeurics CEO Jeffrey Marrazzo told The Star.
However, Marc-André Gagnon, a pharmaceutical policy researcher at Carleton University told CBC News that prices would be even higher in the future: “We’ve had these promises for a very long time that we’d have these gene therapies, but if we set the price at such a high level you open the floodgates and things will get worse from there.”
Drug prices are not regulated by the US Government. This allows drug companies to set their own prices. They never offer any explanations to why the drug costs this much except the development costs. However, the trend is changing and people are raising their voices against the outrageous prices. This has led to companies providing more detailed explanations.
Spark Therapeutics argue that the cost of a blindness cure can easily exceed $1 million if you consider the lost earning and caregiver wages. They expect this drug to last a long time and are hopeful that it will last for life but have no data to support their claim yet.
“Spark Therapeutics is charging as much for Luxturna as they think they can get away with. Our system cannot handle unjustified prices like this,” David Mitchell, founder of the U.S.-based Patients for Affordable Drugs, said in a statement on the organization’s website.
As Luxturna is approved by the FDA, it will most likely be covered by health insurers. “If they decided not to cover it they would immediately have to face negative publicity,” Meredith Rosenthal, a professor of health economics at Harvard University said to CBC News. She added, however, that while insurers can negotiate price cuts on conventional drugs with several competitors, they have little if any leverage on the prices of breakthrough medicines.
The company has introduced many payment plans for payment and includes paying in installments over a number of years. The company will also repay some of the cost if patient’s vision does not improve as expected. This ground-breaking drug might see a cut down in price in the future, but for now, it stands at $850,000.
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