The Washington Post : reported that Lawmakers slam new $89,000 price tag on rare disease treatment: “Unconscionable”

The planned list price for deflazacort is $89,000 a year, with rebates that will bring the net price to $54,000. (Yuri Gripas/Reuters)Politicians are, once again, concerned that a drug company that plans to sell an old medicine for a very high price is taking advantage of the system. Rare diseases were once thought of as unprofitable niche medicines, but the government in 1983 introduced incentives — including a seven-year monopoly — for treatments for orphan diseases that afflict fewer than 200,000 Americans. "That argument is not a defense of Marathon's actions, but rather an indictment of a system that allows drug companies to engage in such opportunistic pricing behavior," the politicians wrote. "We urge you to significantly lower your price for this drug before it goes on the market next month," they wrote.

Parents of adorable baby girl battling rare disease in desperate bid to raise £500,000 for 'wonder drug'

Three-month old Inaaya Shabbir, from Birmingham, has Wolmans Disease – a rare genetic disease that causes malnutrition. Babies with Wolmans disease are healthy and active at birth but soon develop signs and symptoms of the disorder. Wolmans disease is a rare inherited condition involving the breakdown and use of fats and cholesterol in the body. "The treatment is £500,000,I know that seems like an impossible sum but I must take a shot at this monster."WHAT IS WOLMANS DISEASE? "I am hoping to raise enough money to help fund Inaaya's treatment and help her get the medication she needs.

Parents of dying baby girl with rare disease in desperate rush to raise £500k for life-saving treatment

If it takes away a tiny amount of pain, it will be worth it."To help Inaaya, go to: www.justgiving.com/crowdfunding/vici-beardsworth-3?utm_id=1&utm_term=ED7mXZ4J7 Could not subscribe, try again later Invalid EmailThe distraught parents of a dying baby girl suffering from a rare disease that causes malnutrition have launched a desperate plea to raise £500,000 for life-saving treatment for their daughter. "I am hoping to raise enough money to help fund Inaaya's treatment and help her get the medication she needs. Adorable three-month old Inaaya Khan, from Birmingham, is suffering from Wolmans Disease - a condition so rare affects only one in every 400,000 children. Inaaya's devastated parents, Ibrar and Amber, with the help of friends, are now desperately trying to raise the £500,000 needed to pay for her to get life-saving treatment abroad, the Birmingham Mail reports.

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