{"id":363,"date":"2014-07-21T14:14:00","date_gmt":"2014-07-21T14:14:00","guid":{"rendered":"http:\/\/admin.patheos.com\/blogs\/janetheactuary\/2014\/07\/someones-got-to-pay-for-the-rd.html"},"modified":"2014-07-21T14:14:00","modified_gmt":"2014-07-21T14:14:00","slug":"someones-got-to-pay-for-the-rd","status":"publish","type":"post","link":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/2014\/07\/someones-got-to-pay-for-the-rd.html","title":{"rendered":"Someone’s got to pay for the R&D . . ."},"content":{"rendered":"\n<\/head>

From the New York Times, a report on a new medication for cystic fibrosis<\/a>:<\/p>\n

Kalydeco is truly a wonder drug.\u00a0<\/p><\/blockquote>\n

Developed by Vertex Pharmaceuticals, it is the first drug that attacks not just the symptoms but the underlying cause of cystic fibrosis, a genetic lung disease that usually kills victims by the time they reach their 40s. It doesn\u2019t work for every sufferer of the disease, but rather for a small subset \u2014 probably around 2,000 people \u2014 who have a specific genetic mutation that the drug targets. But for those it helps, it is life changing.\u00a0<\/p><\/blockquote>\n

. . .\u00a0<\/p><\/blockquote>\n

There is one other way that Kalydeco is an excellent example of personalized medicine: its cost. It\u2019s more than $300,000 a year. Because patients will likely be taking the drug for the rest of their lives, it could cost millions of dollars to keep just one patient on Kalydeco. That raises another important question about the coming of personalized medicine. How are we, as a society, going to pay for it?\u00a0<\/p><\/blockquote>\n

. . .\u00a0<\/p><\/blockquote>\n

Most state Medicaid programs \u2014 and private insurers \u2014 are paying Kalydeco\u2019s cost because it works so well, and because the patient population is so small.\u00a0<\/p><\/blockquote>\n

. . . .\u00a0<\/p><\/blockquote>\n

When I asked Vertex how it could possibly justify charging $300,000 for Kalydeco, a company spokesman pointed to the small patient population and \u201cthe benefit that the medicine provides.\u201d He also said that the company had spent $6.5 billion on research in its existence, and had only two drugs approved by the F.D.A. In effect, he was saying that the Vertex drug was priced, in part, to recoup not just the research and development that led to Kalydeco but all the company\u2019s R&D.; (For cystic fibrosis sufferers with no insurance, Vertex provides the drug for free.)<\/p><\/blockquote>\n

\u00a0This makes the hepatitis C $150,000 cure<\/a> practically a pittance, not to mention the $13,000 a year AIDs-preventative<\/a>.<\/p>\n

But there\u2019s no easy answer.<\/p>\n

Do we negotiate trade deals demanding that other developed countries pay their \u201cfair share\u201d of development costs? <\/p>\n

Do we treat drug companies as if they were monopolies, to the extent that they hold the patent for a unique drug, and scrutinize their books to ensure that their profit margin is at acceptable levels? <\/p>\n

Should the government get into the R&D; business more extensively, effectively nationalizing the process of drug-development, and leaving only the manufacturing of existing or invented-by-the-government drugs for private companies?<\/p>\n

In our current system, private corporations take the gamble that their research will pay off. \u00a0Would a future government-controlled system be willing to spend the research money to produce Kalydeco? \u00a0If it\u2019s taken over the entire lifetime of a CF sufferer, and if it prolongs that lifetime from a current 40 years to a normal 80 years, then that\u2019s $24,000,000 per person (though, of course, this ignores the loss of the patent in 20 years).<\/p>\n

It is already the case that the UK has a system called \u201cNICE\u201d \u2013 National Institute for Health and Care Excellence <\/a>\u2013 which determines whether the National Health Service will pay for new medications based on the cost per \u201cquality-adjusted life year\u201d \u2014 if taking this medication gains you an additional year of life, they\u2019ll pay for a medication cost of up to GBP 30,000, with statistical adjustments for medications that are only incrementally better than the prior version. \u00a0According to this methodology, Kalydeco has no hope of being approved \u2014 or, presumably can only be approved by lowering the price for UK customers.<\/p>\n

And maybe that\u2019s the right thing. \u00a0 $300,000 per year is a lot of money, paid for by the government or by other policyholders. <\/p>\n

The bottom line: \u00a0our system is pretty lousy \u2014 but is any other system any better?<\/p>\n<\/body><\/html>\n","protected":false},"excerpt":{"rendered":"

From the New York Times, a report on a new medication for cystic fibrosis: Kalydeco is truly a wonder drug.\u00a0 Developed by Vertex Pharmaceuticals, it is the first drug that attacks not just the symptoms but the underlying cause of cystic fibrosis, a genetic lung disease that usually kills victims by the time they reach […]<\/p>\n","protected":false},"author":2209,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-363","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"yoast_head":"\nSomeone's got to pay for the R&D . . .<\/title>\n<meta name=\"description\" content=\"From the New York Times, a report on a new medication for cystic fibrosis:Kalydeco is truly a wonder drug. Developed by Vertex Pharmaceuticals, it is\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.patheos.com\/blogs\/janetheactuary\/2014\/07\/someones-got-to-pay-for-the-rd.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Someone's got to pay for the R&D . . .\" \/>\n<meta property=\"og:description\" content=\"From the New York Times, a report on a new medication for cystic fibrosis:Kalydeco is truly a wonder drug. Developed by Vertex Pharmaceuticals, it is\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.patheos.com\/blogs\/janetheactuary\/2014\/07\/someones-got-to-pay-for-the-rd.html\" \/>\n<meta property=\"og:site_name\" content=\"Jane the Actuary\" \/>\n<meta property=\"article:published_time\" content=\"2014-07-21T14:14:00+00:00\" \/>\n<meta name=\"author\" content=\"Jane the Actuary\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Jane the Actuary\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.patheos.com\/blogs\/janetheactuary\/2014\/07\/someones-got-to-pay-for-the-rd.html\",\"url\":\"https:\/\/www.patheos.com\/blogs\/janetheactuary\/2014\/07\/someones-got-to-pay-for-the-rd.html\",\"name\":\"Someone's got to pay for the R&D . . .\",\"isPartOf\":{\"@id\":\"https:\/\/www.patheos.com\/blogs\/janetheactuary\/#website\"},\"datePublished\":\"2014-07-21T14:14:00+00:00\",\"dateModified\":\"2014-07-21T14:14:00+00:00\",\"author\":{\"@id\":\"https:\/\/www.patheos.com\/blogs\/janetheactuary\/#\/schema\/person\/ed9b99e0bd58c5eeeebae6b82fa5a77a\"},\"description\":\"From the New York Times, a report on a new medication for cystic fibrosis:Kalydeco is truly a wonder drug. Developed by Vertex Pharmaceuticals, it is\",\"breadcrumb\":{\"@id\":\"https:\/\/www.patheos.com\/blogs\/janetheactuary\/2014\/07\/someones-got-to-pay-for-the-rd.html#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/www.patheos.com\/blogs\/janetheactuary\/2014\/07\/someones-got-to-pay-for-the-rd.html\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/www.patheos.com\/blogs\/janetheactuary\/2014\/07\/someones-got-to-pay-for-the-rd.html#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/www.patheos.com\/blogs\/janetheactuary\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Someone’s got to pay for the R&D . . .\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/www.patheos.com\/blogs\/janetheactuary\/#website\",\"url\":\"https:\/\/www.patheos.com\/blogs\/janetheactuary\/\",\"name\":\"Jane the Actuary\",\"description\":\"\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/www.patheos.com\/blogs\/janetheactuary\/?s={search_term_string}\"},\"query-input\":\"required name=search_term_string\"}],\"inLanguage\":\"en-US\"},{\"@type\":\"Person\",\"@id\":\"https:\/\/www.patheos.com\/blogs\/janetheactuary\/#\/schema\/person\/ed9b99e0bd58c5eeeebae6b82fa5a77a\",\"name\":\"Jane the Actuary\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/www.patheos.com\/blogs\/janetheactuary\/#\/schema\/person\/image\/\",\"url\":\"https:\/\/secure.gravatar.com\/avatar\/8d6a493d380e87d49599d5487691c9fc?s=96&d=mm&r=g\",\"contentUrl\":\"https:\/\/secure.gravatar.com\/avatar\/8d6a493d380e87d49599d5487691c9fc?s=96&d=mm&r=g\",\"caption\":\"Jane the Actuary\"},\"url\":\"https:\/\/www.patheos.com\/blogs\/janetheactuary\/author\/actuaryjane\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Someone's got to pay for the R&D . . .","description":"From the New York Times, a report on a new medication for cystic fibrosis:Kalydeco is truly a wonder drug. Developed by Vertex Pharmaceuticals, it is","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/2014\/07\/someones-got-to-pay-for-the-rd.html","og_locale":"en_US","og_type":"article","og_title":"Someone's got to pay for the R&D . . .","og_description":"From the New York Times, a report on a new medication for cystic fibrosis:Kalydeco is truly a wonder drug. Developed by Vertex Pharmaceuticals, it is","og_url":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/2014\/07\/someones-got-to-pay-for-the-rd.html","og_site_name":"Jane the Actuary","article_published_time":"2014-07-21T14:14:00+00:00","author":"Jane the Actuary","twitter_card":"summary_large_image","twitter_misc":{"Written by":"Jane the Actuary","Est. reading time":"3 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/2014\/07\/someones-got-to-pay-for-the-rd.html","url":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/2014\/07\/someones-got-to-pay-for-the-rd.html","name":"Someone's got to pay for the R&D . . .","isPartOf":{"@id":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/#website"},"datePublished":"2014-07-21T14:14:00+00:00","dateModified":"2014-07-21T14:14:00+00:00","author":{"@id":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/#\/schema\/person\/ed9b99e0bd58c5eeeebae6b82fa5a77a"},"description":"From the New York Times, a report on a new medication for cystic fibrosis:Kalydeco is truly a wonder drug. Developed by Vertex Pharmaceuticals, it is","breadcrumb":{"@id":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/2014\/07\/someones-got-to-pay-for-the-rd.html#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/www.patheos.com\/blogs\/janetheactuary\/2014\/07\/someones-got-to-pay-for-the-rd.html"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/2014\/07\/someones-got-to-pay-for-the-rd.html#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/www.patheos.com\/blogs\/janetheactuary"},{"@type":"ListItem","position":2,"name":"Someone’s got to pay for the R&D . . ."}]},{"@type":"WebSite","@id":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/#website","url":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/","name":"Jane the Actuary","description":"","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/?s={search_term_string}"},"query-input":"required name=search_term_string"}],"inLanguage":"en-US"},{"@type":"Person","@id":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/#\/schema\/person\/ed9b99e0bd58c5eeeebae6b82fa5a77a","name":"Jane the Actuary","image":{"@type":"ImageObject","inLanguage":"en-US","@id":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/#\/schema\/person\/image\/","url":"https:\/\/secure.gravatar.com\/avatar\/8d6a493d380e87d49599d5487691c9fc?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/8d6a493d380e87d49599d5487691c9fc?s=96&d=mm&r=g","caption":"Jane the Actuary"},"url":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/author\/actuaryjane"}]}},"_links":{"self":[{"href":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/wp-json\/wp\/v2\/posts\/363","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/wp-json\/wp\/v2\/users\/2209"}],"replies":[{"embeddable":true,"href":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/wp-json\/wp\/v2\/comments?post=363"}],"version-history":[{"count":0,"href":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/wp-json\/wp\/v2\/posts\/363\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/wp-json\/wp\/v2\/media?parent=363"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/wp-json\/wp\/v2\/categories?post=363"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.patheos.com\/blogs\/janetheactuary\/wp-json\/wp\/v2\/tags?post=363"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}