Obama’s precision medicine idea – build huge genomic biobank

Word on the street is that President Obama’s precision medicine initiative will involve building an enormous database of genomic information – the first logical step, many say, in bringing tailored therapy to the masses. It’ll compile the information for a million Americans, perhaps, Science reports: It would not be created from scratch by enrolling new volunteers, however, but […]

Word on the street is that President Obama’s precision medicine initiative will involve building an enormous database of genomic information – the first logical step, many say, in bringing tailored therapy to the masses. It’ll compile the information for a million Americans, perhaps, Science reports:

It would not be created from scratch by enrolling new volunteers, however, but would instead pull together existing studies into one giant database.

The buzz comes a number of scientists familiar with Obama’s project who spoke on background, Science says. Fuller details are expected to emerge Friday.

The biobank’s aim will be to study the relationships between genes and the manifestation of disease – with an ultimate goal of folding these insights into routine clinical care. While we’re many years and dollars (this project’s projected to cost hundreds of millions, Science says) away from this outcome, creating a repository of genetic and phenotypic data is viewed as the logical next step in fine-tuning medical treatment.

J. Craig Venter, for instance, has proposed a similar biobank to study the genetic backbone to aging, as proposed by his new company, Human Longevity Inc.

There are, of course, obstacles to developing a wide-ranging precision medicine plan. One is that there have been related projects, but it’s thus far been hard to push them forward:

A 2011 report from a panel of the National Academy of Science recommended collecting molecular data on millions of patients. It also called for a type-2 diabetes project to identify the amino acids in the blood of people who develop the disease, and assess how pre-diabetes becomes full-fledged.

Nearly four years later, neither study is under way.

This government-endorsed initiative could, of course, “breath life into them,” two panel members told Reuters.

Another hurdle – while there’s been an outpouring of support for precision medicine from patient groups, biotechs, doctors and researchers, one important player could stand in the way: Insurers. They are still grappling with the best way to fund these proposed tailored therapies, which are at present hugely expensive. The Hill says:

The only interests standing in the way of progress are health insurers and PBMs.   Rather, they have made it clear they oppose anything that speeds new treatments to patients.

The opposition exposes the orchestrated outrage over drug prices, led by AHIP National Coalition on Healthcare and big pharmacy benefit managers such as Express Scripts and CVS Health, as nothing but part of cynical plan to limit access to precision medicines.

A recent New England Journal of Medicine study found that health plans and PBMs are working to together to discriminate against sick people.   They are forcing people with HIV, cancer, psoriasis, multiple sclerosis and many other diseases to fail first on cheaper medicines before accessing precision medicines.  And even when the precision medicines are made available, patients have to pay thousands of dollars to use them.   The plans and PBMs know that such out of pocket costs will discourage people from starting new drugs.

Actually, here’s an interesting infographic from the California Association of Health Plans that illustrates the mounting costs that have insurers gobsmacked.

In any case, the piece from Science continues:

As a pilot project, NRC suggested building a large research database with medical and genetic data on 1 million adults. That appears to be reflected in the precision medicine initiative. The plan is to link up existing NIH-sponsored cohort studies and large biobanks created by health care providers. They may range from the famed 67-year-old Framingham Heart Study in Massachusetts funded by the National Heart, Lung, and Blood Institute (NHLBI) to research databases being built by the Marshfield Clinic in Wisconsin and Kaiser Permanente in San Francisco that are linking genetic data with health records.

As we await President Obama’s expected announcement, it’s also worth noting – as CNBC first reported – that several major drugmakers have been invited to the White House on Friday. Vertex (widely known for its precision cystic fibrosis therapy), Regeneron and Merck all received invites to join the President.