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HIPAA isn’t helping in fight against pandemic

A federal patient privacy law is keeping citizens in the dark over the real reach of COVID-19 in their communities. It is time for Congress to amend the Health Insurance Portability and Accountability Act (HIPAA) to allow for the mandatory release of otherwise protected health information during declared epidemics. Public health and safety concerns should always outweigh protecting personal privacy when lives and livelihoods are at stake.

“Do you actually know someone who has had COVID-19?”

Variations of that question are being bandied about social media. Most often the questions are in connection with COVID-19 virus deniers, or at least those who support the idea that the risk of the virus is overrated and that governments are overreacting to it.

Other than those who voluntarily come forward to share their experience with COVID-19, the names and stories of those whose lives have been impacted by it remain hidden from view. Lending truth to the saying “Out of sight, out of mind,” deliberately keeping the public in the dark over who could be contagious with a potentially life-threatening illness leads many to underrate their personal risks and assume they are safer than they may actually be.

Over the weekend, a fourth COVID-19 related death was reported to local health officials by the Taylor County Medical examiner’s office.

County health officials remain hamstrung by HIPPA rules from releasing any potentially identifying information about the deceased beyond that person was over 60 years old. With about 20% of the county’s population over age 60, this narrows the group to about 4,000 people.

With the lack of information, it is easy for misinformation to be spread about the person’s previous medical conditions or where they might have come into contact with the virus. There is an online cottage industry of individuals who are underplaying every reported death by spinning shadows and causing doubts.

In general, patient privacy is a good thing. Beyond prurient interest or the desire for salacious story to tell over tea, there is seldom a good reason to share personal medical information. However, in the case of a contagious pandemic, intentionally withholding information about who is ill and who may have been exposed undermines the ability of health officials to curtail the rate of transmission.

A century ago it was not uncommon to see the names of quarantined families listed in the local newspaper or have distinctive signs posted outside their homes. This was not done out of spite. It was an important tool to alert the public about risks while at the same time making people aware that there were real people being impacted.

In the current pandemic, Americans are drowning in data. There are regular releases of infection rates, death counts and the testing totals, all numbers denuded of any semblance of humanity. The ill and dead are counted as so many beans in the tallyman’s spreadsheet.

As of Monday, Taylor County has had 184 confirmed cases. We must not forget that each case is a person, someone who laughs and cries, is loved and loves others just like the rest of humanity does.

HIPAA and other privacy laws are doing more harm than good in efforts to battle the COVID-19 pandemic.