A geneticist himself, Collins helped discover the gene tied to cystic fibrosis in 1989. In the State of the Union address, Obama highlighted a drug for the fatal lung disease as an example of the medical advancement his initiative will seek to propel.
"I want the country that eliminated polio and mapped the human genome to lead a new era of medicine—one that delivers the right treatment at the right time," Obama said in the Jan. 20 speech. "In some patients with cystic fibrosis, this approach has reversed a disease once thought unstoppable."
He was referring to Vertex Pharmaceuticals' Kalydeco, the first drug to address the genetic cause of cystic fibrosis. It was approved by the Food and Drug Administration in 2012, in a review that took just three months rather than the standard 10 or accelerated six.
Vertex is among companies whose executives received mysterious invitations this week to attend an event at the White House on Friday. Others include Regeneron, Merck, Illumina and Foundation Medicine.
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"We believe strongly in this model of using human genetics to identify new targets," Vertex Chief Executive Officer Jeff Leiden said in a telephone interview. "Our experience with cystic fibrosis tells us that works well."
So what is precision medicine? It's a term used frequently, often interchangeably with "personalized medicine." Dr. David Altshuler, a geneticist and founder of the Broad Institute of Harvard and MIT, as well as Vertex's recently appointed chief scientific officer, puts it this way:
"Precision medicine is a new way of discovering medicines that target the underlying cause of disease," he said by telephone. "What distinguishes it is starting with a target that really is a root cause rather than one involved in symptoms of a disease, with the potential that a medicine will actually be able to modify the course of the disease, or even prevent the disease."
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Here's how the White House breaks down the $215 million investment, to be included in the president's budget proposal expected Monday:
-$130 million to the National Institutes of Health to develop the "voluntary national research cohort" of a million people.
-$70 million to the National Cancer Institute, part of the NIH, for work identifying the genomic drivers of cancer and drug development resulting from that research.
-$10 million to the FDA to develop databases needed to support regulatory aspects of the program.
-$5 million to the Office of the National Coordinator for Health Information Technology to support systems for secure data sharing across systems.
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Which companies were invited says a lot about what the administration is seeking to encourage with the initiative. Regeneron, for example, announced its own human genetics initiative early last year, partnering with Geisinger Health System to sequence the genomes of about 100,000 volunteers to seek the genetic roots of disease.