Maine CDC stalling release of coronavirus testing data

When we hear about the challenge of testing for the coronavirus (SARS-CoV-2), we often hear that tests may take a few days to report a result. Perhaps, as a recent piece in the New York Times suggests, we need tests with a quicker response, even if they are less sensitive.

Finding an active case of COVID-19 involves a diagnostic test using a technique known as polymerase-chain reaction, or PCR. These tests detect viruses, such as influenza and the coronavirus that causes COVID-19, by looking for fragments of the virus’s genetic material (RNA) in a swabbed sample from the patient.

The test is run through multiple cycles in order to amplify the level of viral RNA in the sample, and once reaching a certain level, is deemed a positive result. The number of cycles needed to register a positive test is called the cycle threshold (CT) value. In short, the lower the CT value, the greater the amount of virus, or viral load, in the patient’s sample.

It is important to note that diagnostic tests are different from antibody tests, which measure the prevalence of a particular antigen in a patient’s blood. Those are used to better understand if a patient has been exposed to the coronavirus and if their immune system countered with an antibody response.

Last month, using data from Massachusetts, New York and Nevada, the Times found that up to 90% of positive coronavirus test results would be negative if the labs that processed them had set a lower cycle threshold.

Examining 872 positive test results from the New York state lab, they found that if the state had established a cutoff at 35 cycles instead of 40, 43% would no longer register a positive. If the CT was set at 30, almost-two-thirds of those would not count as a positive. In Massachusetts, over 85% would have been negative results had the test been limited to 30 cycles. 

The predominant coronavirus diagnostic test used by the Maine CDC recommends cutoff at 45 cycles of amplification. The US CDC notes a median CT value of 33.

Since the Times highlighted this issue, many people, including myself, became curious as to how positive you can be about a positive COVID test. So I reached out to the Maine CDC, requesting similar data: CT values for all of the positive coronavirus test results processed in Maine thus far. 

To my request, the Maine CDC spokesperson replied:

“The information is not available in the format you describe. Accommodating your request to provide a customized data presentation would require Maine CDC lab staff to remove personally identifying information from more than 50,000 test result records. At present, the lab’s priority continues to be pandemic response. Redeploying staff to fulfill your request would inhibit that response.”

To be clear, I have not requested that Maine CDC pour over 50,000 test results. Maine has confirmed less than 5,000 COVID-19 cases through positive test results. The rest of the nearly 5,400 total case number is made up of “probable cases.” While understanding that the CDC has a duty to protect personal medical records, my request merely requires a 30,000 foot view of the positive test results. 

That is why I followed up with an official request for this data under Maine’s Freedom of Access Act (FOAA).

According to FOAA, state agencies must acknowledge any request for public records made, and deliver a time and cost estimate for fulfilling the request, including issues that might preclude an agency from releasing some information, like personally-identifiable medical records.

On Wednesday, a representative of the Maine Department of Health and Human Services responded that, “Insofar as the estimated timeframe for processing your request is six(6) months and the cost exceeds $100; please note that the Department will not further process your request until and unless you pay the estimated cost of $100.”

I have followed up with Maine CDC to clarify that I am requesting data from less than 5,000 records, not more than 50,000, and to confirm that fulfilling my request would actually take six months.

Compared to the enormous suffering that the administration’s coronavirus response has already wrought on Maine people’s lives and livelihoods, the $100 fee seems trivial.

If data from Maine mirrors that from Massachusetts and New York, it would be a bombshell finding. It could render much of the contact-tracing and case-chasing regime that Governor Mills, Dr. Shah and public health officials employ to maintain control over Maine people useless, because the “cases” being tracked are carrying very low amounts of the virus and would be less likely to spread it throughout day-to-day life. 

Obviously, every interaction between people is different, and so far, no one can calculate the odds of contracting the virus from any one person. Many factors are at play: the amount of viral load in a patient’s respiratory tract, the length of time someone is exposed to the virus, the physical distance between the patient and another contact, and the level of innate immune resistance carried by the second contact, to name a few.

It is mind-boggling that the difference between 5,000 confirmed cases and 500 confirmed cases could be a minuscule difference in the amount of viral load detected in a patient, which depends on the sensitivity of the diagnostic test (which is dependent on the test chosen by state public health officials). 

That could also be the difference between the current economic malaise brought on by the governor’s disastrous lockdowns and a policy that kept Mainers’ rights and lives intact. The sad thing is that, as of today, our fate is still in Gov. Mills’ hands.