This article is from the source 'washpo' and was first published or seen on . It last changed over 40 days ago and won't be checked again for changes.

You can find the current article at its original source at http://www.washingtonpost.com/national/health-science/obama-seeks-215-million-for-personalized-medicine-initiative-using-genetic-data/2015/01/29/75789342-a7f4-11e4-a7c2-03d37af98440_story.html?wprss=rss_homepage

The article has changed 2 times. There is an RSS feed of changes available.

Version 0 Version 1
Obama seeks $215 million for personalized medicine effort Obama touts ‘lifesaving’ potential of personalized medicine
(about 11 hours later)
The centerpiece of President Obama’s new “precision medicine initiative” would be a massive database containing the genetic profiles, medical histories and other data of a million or more willing Americans. President Obama, in announcing an ambitious plan on Friday to invest hundreds of millions of dollars in cutting-edge biomedical research for treatments tailored to the genetic makeup of individual patients, said the effort would “lay the foundation for a new generation of lifesaving discoveries.”
The effort, which federal officials said would partly include pooling volunteers from existing studies into a single project, is aimed at helping doctors and researchers better understand the complicated mechanisms underlying any number of illnesses. In recent years, targeted therapies have led to more effective treatments for various cancers and other diseases, such as cystic fibrosis. The Food and Drug Administration has approved a growing number of specialized drugs for patients with specific genetic mutations, and the biotech industry has many more drugs in development.
The trend has benefited from sharp declines in the cost of genome sequencing. Decoding one person’s genome, which used to cost hundreds of millions of dollars, costs about $1,000. Storing massive amounts of data is cheaper than ever, and the world is increasingly connected by mobile technologies and electronic medical records.
Lawmakers from both parties have embraced the broad idea of speeding up medical innovation, even if the details about how best to do that remain unresolved.
“The really good news — this is how you know that the moment is right — is there’s bipartisan support for the idea here in Washington,” Obama said in the East Room on Friday morning, drawing a laugh from the crowd of renowned researchers, rare disease patients and officials from the biotech industry. “Which makes me very happy.”
Obama said he hopes to tap that bipartisan support and ask Congress for a $215 million for research on precision medicine. The request will be part of his annual budget scheduled for release Monday.
Still, for all its promise, the potentially staggering cost of some of the targeted drugs that have this kind of research has raised concerns.
Kalydeco, a drug approved in 2012 and highlighted by Obama on Friday, has done wonders for about 4 percent of cystic fibrosis patients with a specific genetic mutation. But it carries a price tag of about $300,000 a year.
“We want to be sure that when these drugs come to market, they aren’t priced at a level people can’t afford,” said John Rother, president of the National Coalition on Health Care, which represents insurers, employers and consumer and religious groups, among others. “That’s not the kind of world we want to live in.”
Drug makers and researchers note out that the cost of developing them is high, while the number of patients who benefit from them can be small. In addition, they say, creating treatments that profoundly change the course of a disease can save money by avoiding other long-term medical costs.
The centerpiece of Obama’s plan involves $130 million for NIH to develop a national database, containing the genetic profiles, medical histories and other data of a million or more willing Americans. That effort, which would likely combine patients from existing studies, is aimed at helping doctors and researchers better understand the complicated mechanisms underlying any number of illnesses.
“This research will dramatically advance our knowledge of diseases, how they originated and how we may prevent or treat them,” said Francis Collins, director of the National Institutes of Health.“This research will dramatically advance our knowledge of diseases, how they originated and how we may prevent or treat them,” said Francis Collins, director of the National Institutes of Health.
Obama plans to outline the idea Friday morning at the White House in front of academics, researchers and drug-industry officials. It is part of a broader initiative to bolster “precision medicine,” which tries to tailor treatments and preventive measures based on individuals’ makeup. Another $70 million would go to the National Cancer Institute to expand research on the genetic factors that can lead to cancer and to develop better treatments. Cancer, among the most pervasive and deadly diseases, is also where researchers have made some of the greatest strides in developing effective therapies for certain subsets of patients.
“It holds the potential to revolutionize the way we approach health in this country and, ultimately, around the world,” Jo Handelsman, associate director for science at the White House Office of Science and Technology Policy, told reporters before Friday’s announcement. “Precision medicine is about moving beyond [the] one-size-fits-all approach to medicine and, instead, taking into account people’s genes, their microbiomes, their environments and their lifestyles.” Under Obama’s plan, the FDA and the Office of the National Coordinator for Health Information Technology would receive $10 million and $5 million, respectively, to evaluate new innovations and put them on a fast track, and to build the technological infrastructure to share data while protecting patients’ privacy.
As part of that push, the president plans to ask Congress for a $215 million investment when he unveils his annual budget request next week.
About $130 million of that would go to the NIH to develop the national database, which would protect patients’ identities but allow researchers to share reams of genetic data. The Food and Drug Administration and the Office of the National Coordinator for Health Information Technology would receive $10 million and $5 million, respectively, to evaluate and fast-track new innovations and build the technological infrastructure to share data securely. Another $70 million would go to the National Cancer Institute to scale up research into more and better treatments for specific types of cancer.
Proponents of the approach often point to advances in the cancer field as an example of the promise of precision, or personalized, medicine. In recent years, the FDA has approved numerous drugs that can target specific types of the disease effectively.
The push toward more targeted therapies in recent years also has led to breakthroughs for other diseases, including hepatitis C and cystic fibrosis. Kalydeco, approved by the FDA in 2012, targets the underlying genetic cause of cystic fibrosis for a small subset of patients with a specific mutation.
For all the promise of precision medicine, the staggering costs of many targeted drugs has caused consternation among patients and insurers. Kalydeco, for example, costs about $300,000 a year. Sovaldi, a new hepatitis C treatment, costs $84,000 for a 12-week treatment, or about $1,000 per pill. Numerous cancer drugs cost more than $100,000 a year.
Drug makers note that the cost of developing such drugs costs is high, while the number of patients who can use them is often small. And drug makers say that curing hepatitis C patients can save money by avoiding long-term medical costs.
The cost of genetic research, meanwhile, is falling, said NIH director Collins. Sequencing a person’s genome used to cost many millions of dollars. It now runs about $1,000. Storing massive amounts of data is cheaper than ever, and the world is increasingly connected by mobile technologies and electronic medical records.
“This concept of precision medicine ... is not entirely new. After all, blood transfusions have been based on blood typing for almost a century,” Collins said. “But for much of medicine, this kind of personalizing has just not been possible. We just didn’t know enough. That’s all changing now and at an unprecedented pace. Which makes now the right time to launch this initiative.”
Read more:Read more:
Obama announces new ‘Precision Medicine Initiative’Obama announces new ‘Precision Medicine Initiative’
How will the ‘Precision Medicine’ plan help you?How will the ‘Precision Medicine’ plan help you?