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The principle at work with orphan drugs is more deontological in its nature because it uses massive amounts of taxpayer money to provide drugs for relatively few individuals, under the idea that all Americans deserve their ailments to be treated, not just Americans with common ailments.
From this analysis, Vertex appears to be operating with poor ethics. From a utilitarian perspective, the American taxpayer has underwritten the development of this drug so that CF sufferers can also receive treatment, yet Vertex in charging such a price for Kalydeco is rejecting the bargain that it has with its backers. From a utilitarian perspective, this betrayal of the American taxpayer represents harm done to the masses for the benefit of a few (Vertex shareholders). That this behavior runs directly contrary to the spirit of the system places Vertex on shaky ethical ground from a deontological perspective as well. The company is not expected to behave altruistically, but both the law and societal norms reject the idea that a person's life should be held at ransom, especially in amount that it unreasonably high. Vertex is under no obligation to lower the cost for insurance companies, it is worth noting, as those companies have taken on the risk associated with that customer....
That is a business decision the insurance companies made, and for them the fact that they are losing on their actuarial gamble is of no concern to Vertex. The American taxpayer financed Kalydeco in part, and no insurance patient is being denied covered on account of price, because insurance companies can afford to pay, even if they don't like it. With respect to governments that face legitimate budget situations, again, governments make choices based on priority and in nations where governments have a bargain with their citizens to safeguard health (i.e. Canada, UK, etc.) it is the responsibility of those government to uphold that bargain. Their taxpayers are being abused by Vertex, but we have established that Vertex is in the wrong already, and this only lends support to this conclusion.
Works Cited:
FDA.gov. (2012). Designating an orphan product: Drugs and biologics. Food and Drug Administration. Retrieved March 19, 2012 from http://www.fda.gov/ForIndustry/DevelopingProductsforRareDiseasesConditions/HowtoapplyforOrphanProductDesignation/default.htm
Stein, R. (2012). Cystic Fibrosis drug wins approval. NPR. Retrieved March 19, 2012 from http://www.npr.org/blogs/health/2012/02/01/146166743/cystic-fibrosis-drug-wins-fda-approval
Works Cited:
FDA.gov. (2012). Designating an orphan product: Drugs and biologics. Food and Drug Administration. Retrieved March 19, 2012 from http://www.fda.gov/ForIndustry/DevelopingProductsforRareDiseasesConditions/HowtoapplyforOrphanProductDesignation/default.htm
Stein, R. (2012). Cystic Fibrosis drug wins approval. NPR. Retrieved March 19, 2012 from http://www.npr.org/blogs/health/2012/02/01/146166743/cystic-fibrosis-drug-wins-fda-approval
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