According to a story from the Vancouver Sun, five rare disease drugs just received coverage in British Columbia. The funding comes from savings accumulated thanks to a recent agreement that reduced the price of generic drugs.
The drugs in question include Lemtrada, a treatment for the relapsing-remitting variant of multiple sclerosis. Another drug called Firazyr also received coverage, and is meant as a treatment for hereditary angiodema, a condition that is characterized by severe swelling that can occur on arms, legs, intestinal tract, and airway. Zaxine, a treatment for hepatic encephalopathy, was also approved for coverage. Hepatic encephalopathy is an altered state of consciousness caused by liver failure. Two treatments for idiopathic pulmonary fibrosis, Esbriet and Ofev, also got coverage.
It is estimated that the drug coverage could allow 1,500 people living in British Columbia to access treatment for these conditions. Many of the drugs were prohibitively expensive for many of the people that needed them, and covering the drugs could cost an estimated $30 million over the next three years. The Health Minister of British Columbia, Adrian Dix, says that the new coverage fills a significant health need for the region, and that patients have been waiting years for the approval. Dix also says that the coverage would not have happened had the government not been able save around $20 million thanks to the previously mentioned generic drug agreement.
Public demand for coverage of rare disease treatments has been an issue of controversy for British Columbia. For example, a student last year in the region who had atypical hemolytic uremic syndrome needed coverage for Solaris, a treatment for the condition that costs a staggering $700,000 a year. At that time, Dix argued that coverage for extremely expensive treatments should be reviewed on an individual case basis. A special review committee ultimately approved the drug for coverage in the student’s case.
In another case, a student’s coverage for Orkambi, a treatment for cystic fibrosis, ran out. The treatment costs $250,000 per year, but this time Dix did not automatically approve the drug for coverage. Instead, he blamed Vertex, the drug’s developer, for its high price tag, extreme negotiation strategy, and its failure to obtain approval in other areas of the country.
