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An Old Drug Gets a New Price to Fight a Rare Disease: $89,000 a Year

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Source: Bioethics.com.

Source: Bioethics.com.

February 17, 2017

(The Washington Post) – An old steroid treatment, long available outside the United States, received approval this week for a rare disease that afflicts about 15,000 Americans. Though not previously approved in the United States, the drug, deflazacort, has for years been available to patients suffering from the devastating and fatal disease Duchenne muscular dystrophy; families can import it from abroad for about $1,200 per year on average. The new list price for the drug? $89,000 a year.

This article was originally published on Bioethics.com under a Creative Commons License.

This article was originally published on Bioethics.com under a Creative Commons License.


The views, opinions and positions expressed by these authors / blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Human genome editing report strikes the right balance between risks and benefits

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Source: The Conversation, Academic rigor, journalistic flair. The ConversationThe Conversation

Excerpt:

Gene therapy is growing in its capabilities, but there should be limits to its use. Shutterstock

If you recognise the words “CRISPR-mediated gene editing”, then you’ll know that our ability to alter DNA has recently become much more efficient, faster and cheaper.

This has inevitably led to serious discussions about gene therapy, which is the direct modification of someone’s DNA to rectify a genetic disorder, such as sickle cell anaemia or haemophilia. And you may also have heard of deliberate genetic enhancement, to realise a healthy person’s dreams of improving their genome.

Both of these issues have now been tackled in a comprehensive report on gene editing released today by the US National Academy of Science and National Academy of Medicine.

The message is fairly simple: relax, we’ve seen this all before, little if any harm has eventuated, and society is well placed to move forward together on this.

A definite maybe

Of all human technologies, recombinant DNA has arguably been one of the safest. There have been multiple benefits in both medicine and agriculture. And the legitimate concerns that arose when viruses were first mixed with bacterial genes, when cloning was first introduced, and when stem cells were developed, have not come to pass.

I cannot list all the benefits here, but if you have received the Hepatitis B vaccine or Australian Ian Fraser’s Gardasil vaccine, which protects against cervical cancer viruses, you have been protected from disease thanks to recombinant DNA technology.

Read more at theconversation.com
The views, opinions and positions expressed by these authors / blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.