Cost of treating rare genetic blindness: $425000 per eye

Cost of treating rare genetic blindness: $425000 per eye

Cost of treating rare genetic blindness: $425000 per eye

Spark Therapeutics Inc said on Wednesday it would charge $850,000 per patient for its gene therapy to treat a rare form of blindness, lesser than analysts' expectation of around $1 million. The Post says it went with the lower figure in part because insurers indicated $500,000 per eye would shrink the pool of those who qualified, and the company is discussing rebate and payment plan options. It can improve the vision of those with a rare form of blindness that is estimated to affect just a few thousand people in the US. There are only about 1,000 cases of retinal dystrophy in the US now. It isn't hard to understand why these drugs are hitting the market with sky-high prices, but it is also undeniably problematic when a life-saving medication arrives with a price-tag that is out of reach to many.

'We wanted to balance the value and the affordability concerns with a responsible price that would ensure access to patients, ' said CEO Jeffrey Marrazzo, in an interview with The Associated Press.

Given Luxturna's federal approval and strong study results, experts say USA insurers will likely cover the drug.

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Like most prescription medicines in the USA, most of the immediate costs of Luxturna will be borne by insurers - not patients - including private plans and government programs. Now the highest priced therapy in the country - outpacing drugs like Spinraza at $750,000 for the first year of therapy - it falls on Spark to come up with the right pricing model that can persuade payers to cover the procedure for a small group of under 2,000 potential patients, with fewer than 20 new patients per year.

That makes the treatment, called Luxturna and made by Spark Therapeutics, the most expensive medicine sold in the USA, ranked by sticker price. So this means the company will pay rebates to certain health insurers if the treatment is not wholly effective. The therapy is also created to only be given once. That idea would apply to government programs like Medicare and Medicaid, which provide health coverage to the poor and elderly.

Spark said it had also designed a scheme that would allow the drug to be sold directly to insurers or special pharmacies, rather than hospitals or treatment centres, which tend to charge big mark-ups that can prove costly in the case of expensive drugs such as Luxturna.

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And on the other side of the Atlantic the Association of the British Pharmaceutical Industry (ABPI) has often suggested that expensive treatments could be funded by instalments, or vary price per patient according to effectiveness. However, some companies have begun to offer more detailed reasoning as the backlash against drug prices has grown more heated.

Luxturna is delivered to patients just once. The cost dilemma presented by gene therapies stems from the fact they are one-time treatments. Steve Miller, Express' chief medical officer, said that "Many people were anticipating this [retinal disease treatment] would be more than a million dollars..." "Our system can not handle unjustified prices like this, and the new payment models announced today are merely a way to disguise a price that is simply too high".

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