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Precision medicine demands more than mere rhetoric

President Obama recently announced plans for a “Precision Medicine Initiative,” which seeks to improve the quality of medical care by tailoring treatments to individual patient needs. The president’s goals are laudable. But parts of his signature legislation, the Affordable Care Act, stand in the way of tailoring treatments to individuals. These parts must be addressed to ensure this $215 million initiative succeeds and helps millions of chronically ill patients.  

To understand the value of precision medicine, consider the challenges faced by people living with the autoimmune disease lupus. With this chronic inflammatory condition the immune system cannot tell the difference between foreign invaders and the body’s healthy tissues and creates auto-antibodies that attack and destroy healthy tissue.

{mosads}Like many diseases, no two cases of lupus are exactly alike. There are no one-size-fits-all treatment plans. Currently, it can take months or years for doctors to find the right combination of medicines to treat each case of lupus. 

Precision medicine — which involves creating a unique treatment regimen for each individual patient based on understanding the causes of disease, including the person’s genetic and health history — could help doctors find the right drug much quicker. Lupus isn’t the only condition that requires such a tailored medical response. Those suffering from epilepsy, diabetes and rheumatoid arthritis, among many other diseases demand similarly precise treatments. 

Many insurance plans sold under the ACA Health Insurance Marketplace price certain medications out of reach for many patients. For example, among mid-level “silver” plans, 60 percent of some cancer medicines require the highest level of cost-sharing by patients. Such cost-sharing requirements force patients to pay thousands of dollars out-of-pocket. As a result, many patients and their doctors may choose a medication that is not as effective simply because of cost. 

Another common feature of health insurance marketplace plans is the so-called “fail first” policy, which require patients to prove that a cheaper medicine is found to be ineffective before their insurance plan will pay for a moreexpensive alternative. In other words, these plans tell patients they must get sicker before they can receive the medicines doctors know will make them better. A similar restriction requires patients to seek prior authorization before they can access a particular medicine.

These policies put patients’ health — and their lives — at risk. 

Such “utilization management” policies are far more common in ACA Marketplace plans than in employer-provided insurance plans, according to healthcare consulting firm Avalere. For example, more than half of Marketplace plans impose utilization management policies on medicines for mental health conditions. In comparison, just 11 percent of employer-sponsored plans force patients to jump through these hoops. The increased use of utilization management policies such as fail first coupled with increasingly high cost sharing make it enormously difficult for patients to obtain and maintain customized treatment regimens prescribed by their doctors.  

In addition, years of budget cuts to the National Institutes of Health have slowed research that could lead to a better understanding of the root causes of disease.  Lagging funding also threatens the advancement of precision medicine, which demands heavier investments in basic research. In the case of lupus, scientists still haven’t discovered the underlying causes of this autoimmune disease. The answers will likely come from basic scientific research funded by the NIH. 

However between 2003 and 2014, lawmakers cut the NIH budget by 22 percent after adjusting for inflation, according to the Congressional Research Service.  Do the Congress and the President expect that the $215 million Precision Medicine Initiative will make up for the multibillion shortfalls in NIH funding? Only by improving the ACA and fully funding basic scientific research at the NIH can Congress and the president ensure the $215 million Precision Medicine Initiative reaches its potential and helps millions of chronically ill patients.   

It’s encouraging to see so many leaders in Washington championing the precision medicine model. Nevertheless, if they are serious about this approach to healthcare, they will need to prove it with their policies.

Raymond is president and CEO of the Lupus Foundation of America.

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