Asked for basic data, state agency hides behind HIPAA

Every year, about 12,000 babies are born in Montana, among the 4 million babies born annually in the United States.

Like every other state, Montana has a newborn screening program. Shortly after a baby is born, between 24 and 48 hours of age, it is subjected to routine tests for 28 rare disorders that, if left untreated, could result in intellectual disability, brain damage or death.

The most important factor in these newborn screening programs is speed. The whole point of the testing is to detect disorders quickly so babies can be treated early enough to prevent tragic consequences.

There are a lot of regulations that have to be followed. If a sample is collected at less than 24 hours of age, the test must be repeated. If a test is administered on a baby that doesn’t meet the weight requirement of at least 1,500 grams, that also triggers a repeat of the test.

Also, hospitals are required to send samples to the lab within 24 hours of collection, or have them picked-up and delivered by a medical courier.

One complication is that the Montana Public Health Laboratory is open six days a week, Monday through Saturday, with limited hours on Saturdays. What happens to babies born on a Friday?

Well, here’s what happened in Colorado: Two babies born at hospitals just an hour’s drive apart were both born with MCAD deficiency, a rare but treatable disorder. The baby born on Tuesday lived, and the baby born on Friday died. Because of limited lab hours, the Friday baby’s blood sample wasn’t picked up by courier until two days later, and the baby died at just 4 days old.

Naturally, a new parent would want to know if hospitals in Montana are performing up to snuff when their newborn’s life is at stake. Right?

So, I’m sorry that I have to be the one to bring the bad news: If you want to know whether the hospital in your community is performing at the level it should be, you’re out of luck. The Montana Department of Public Health and Human Services (DPHHS) refuses to release the information and be held accountable.

In Great Falls Tribune v. Day (1998), a well-known right-to-know case that went all the way to the Montana Supreme Court, Justice Terry Trieweiler noted that “government operates most effectively and is most accountable when it is subject to public scrutiny.” But it seems DPHHS doesn’t agree.

I have been attempting to negotiate with DPHHS for the release of newborn testing information, statewide, since October 2014. I’ve been doing everything I can because I care about the health and welfare of Montana’s children, and I want to know how our hospitals are performing compared with other hospitals around the country.

I have been stonewalled from the start and have gotten nowhere. I have made several requests. All were denied. It took DPHHS almost a month and a half just to respond to the first request. I also placed several phone calls to DPHHS Director Richard Opper and MTPHL Newborn Screening Supervisor Vicky Tiberi. None of them were returned. I had one conference call with Deputy Chief Legal Counsel Shannon McDonald and Public Information Officer Jon Ebelt, but nothing came of it.

Part of the problem is that Montana’s Public Records Act is relatively weak, compared to some states. Here’s why:

♦ There is no time limit for how long an agency can take to respond to your request.

♦ There is no formal appeal process, meaning that if your request gets denied, your only recourse is to file a lawsuit, which allows the agency to begin wasting taxpayer dollars.

♦ In other states, requesters have the option of appealing to the attorney general. In Montana, the attorney general has no such prescribed role.

♦ Even if you win the suit, there is no guarantee the judge will award you litigation costs and attorney’s fees. However, Rep. Donald Jones, R-Billings, who sponsored House Bill 123, which just cleared the House last month, aims to change that, among other things.

The department claims that the release of newborn screening information would violate HIPAA, the federal Health Insurance Portability and Accountability Act of 1996, as well as some sections of Montana law that deal with privacy. For almost 20 years now, government agencies have routinely used HIPAA as an excuse not to release any healthcare-related information. DPHHS is doing so again.

The privacy provisions of HIPAA mainly deal with the release of information that can be used to identify patients. That should not have been a concern in this case. I requested extremely basic and limited information with no identifiers. The information I asked for could never be used to identify a single individual.

I did not request any identifiable information, such as date of birth, gender, medical ID number, or the outcomes of the testing. I simply asked for the names of hospitals, the sample collection date, and the date those samples arrived at the lab. Confidentiality should not have been an issue.

I, like many others, just want to know if the newborn screening program in Montana
is performing at the level required by law. If we, the public, are not allowed to inspect this information, how do we know whether hospitals are succeeding or failing? How do we know whether newborn babies’ lives are being put at risk, unnecessarily?

In 2008, out of 12,500 births in Montana, 17 babies were treated for a condition found as a result of newborn screening. Those 17 newborns were found to have a potentially severe or deadly condition.

It is a shame that the press and the public in Montana so often have to file lawsuits against local government agencies just to get a records request fulfilled. The cost of a single lawsuit can easily exceed $30,000. Worse yet, sometimes a local government—like the city of Billings, for instance—just might decide to sue you for simply exercising your right to request public records.

And remember, every time those who represent us behave in such an irresponsible manner, it’s taxpayer money that is being wasted to hide information the public is entitled to know.

I will continue to press for the release of this information. In the meantime, if you’re a parent with a child who has had a particularly good, or bad experience, with newborn screening; I would love to speak with you about it. Please visit the Montana Center for Investigative Reporting’s site and fill out our contact form, or send an email to: news@mtcir.org.

This story was written with support from the Fund for Investigative Journalism. Follow Jeremy Chapman and the Montana Center for Investigative Reporting on Twitter.

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