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Medicare Refuses to Share Substance Abuse Data With Researchers

Last Updated on February 3, 2021 by Inspire Malibu

Scientific research into addiction has come a long way since locking alcoholics and drug addicts in sanitariums for the insane. We now know that addiction is a chronic, relapsing brain disease that some people are at risk for due to genetics, while others develop the condition as a result of post-traumatic stress disorder, depression or a number of other underlying factors. Scientific studies have played a vital role in how physicians treat addiction.

Medicare Deleted Addiction Files

In 2013 though, the Centers for Medicare and Medicaid Services (CMS) began deleting substance use disorder data from files they previously shared with researchers. This is a blow to everyone in the field of addiction. Scientists can no longer track and compile information on the millions of people suffering from dependency issues, which makes it all but impossible to know which procedures and interventions are working or not.

The news of CMS deleting data files broke in December 2014, but made little news until Nobel Prize winner August Deaton, and his co-author Anne Case, released the findings of their latest study. The researchers found that mortality rates of middle-aged white men are spiking more in the U.S. than anywhere else in the world.

What are the Substance Abuse Research Findings From August Dean and Anne Case?

  • An uptick in reliance on opioid pain medications, starting in the late 1990s and leading to poor health and mortality outcomes
  • An increase in the suicide rate among middle-aged men and women
  • Chronic liver disease related to alcohol and drug abuse among middle-aged men is on the rise
  • Fatalities from drugs, alcohol and suicide among whites from all education groups, not just low-income, have surged


Deaton and Cases’ findings are considered a “bombshell” in the healthcare community. CMS, the federal agency that controls the largest bank of health data, however, won’t allow researchers to follow up on Deaton and Cases’ results. This makes it nearly impossible to understand the role of substance abuse in the American health care system.

The Centers for Medicare and Medicaid Services have responded to the scientific outcry by claiming it’s a privacy issue. Citing a 1987 ruling, the agency has said that researchers must get an individual’s consent to use their information in a study. Not only did this contradict the way CMS had been handling data for decades, very few, if any, researchers have the resources to obtain consent from millions of people.

Jonathan Skinner, Ph.D., a professor in Dartmouth’s economics department told Vox News, “Just as we begin to understand the severity of drug and alcohol abuse, CMS rules to make it impossible to track trends or better understand fundamental causes.” He added that this move has blocked the medical field’s ability to confront the nation’s current public health crisis related to addiction.

Because of the enormous amount of stigma associated with addiction, some believe the Centers for Medicare and Medicaid are acting out of good intentions.

But at a time when an estimated 23 million Americans struggle with the painful symptoms of addiction on a daily basis, their timing couldn’t be worse.

With lobbying and a greater awareness surrounding this issue, many in the research community are hopeful that CMS will make adjustments and once again release the crucial data sometime soon.


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