Hidden but not forgotten

Breanne Ward describes the heart-wrenching experience of treating people with suicidal thoughts.

“Their focal point of pain is so severe that they don't even want to consider reasons to stay.”

She explains that some have a plan, and others just disappear.

“Some clients say, ‘I have pills that I'm trying not to take,’ some say, ‘People will be fine if I'm not here.’ Some are giving away things, some people are making statements to others as if they are saying goodbye. It runs a gamut, and then there's others that you don't know until you're getting a call that they're gone.”

Clinicians dedicate their lives to healing others. Sometimes this means dealing with complex cases and challenging situations, sometimes with dire outcomes. Losing a patient can make even the most confident, well-qualified practitioner question themselves.

“It makes you feel like, are you competent enough, as a clinician,” Ward, a CEO and licensed mental health counselor, mused.

Which makes having evidence-based clinical tools at their disposal even more important.

Yet, in January, these tools they depend upon started disappearing with little to no warning. As of Feb. 2, a New York Times article counted over 8,000 government web pages missing.

Guidelines protect Americans by offering the most effective, scientifically back treatment plans. They also provide information on treatments that might be less effective, at best, and harmful, at worst.

For mental health providers, this applies to their treatment decisions as well. And these guidelines are backed by data, data which make prevention and appropriate policy change possible.

When Ward found these guidelines and data were gone, she told me, “I was in shock. In disbelief. I was confused.”

She was not the only one with negative feelings regarding the outages.

For Sara Anne Willette, data helps protect her life.

“When the pandemic started in 2020, my husband and I had to go into isolation because I have Common Variable Immune Deficiency,” she said.

Willette watches infectious disease data to determine how safe it is for her to go out in public, even to the doctor for necessary treatment.

“During times of high transmission, we tend to not go get necessary medical care because we're trying to avoid a worse outcome,” she said.

Willette uses the Iowa COVID 19 Tracker, which uses wastewater data to create visual representations of infectious disease trends. Now we are entering a time of increased infections – influenza, COVID, RSV and bird flu, to name a few.

“This would be the time to provide as much information to the American people as possible to help,” Willette told me.

She also is concerned about the economy as well.

“It happened (with COVID), and it will likely happen again with H5N1 because a bunch of people are going to get sick,” she said. “When people can't go to work, businesses can't do work. Then we have macroeconomic problems.”

If people have doubts about illness shuttering entire buildings, they can talk to parents in Johnston. Beaver Creek Elementary was closed for two days at the end of January due to 20 percent of the kids being sick.

Contrary to what our future health secretary says, infectious disease scientists will not receive a “break for the next eight years.”

They will just be hamstrung without data.

As Willette says, “Infectious diseases don't care if you don't track them. They are still going to get people sick.”

And all of these public health issues can have a multiplier effect.

“COVID did a number on many people,” she aid. “Yes, there were high mortality rates due to the virus itself, but people also lost their sense of belonging, their sense of self-concept and self-esteem. We definitely have seen an increase of suicidal ideation.”

While the justification to remove datasets was to comply with anti-trans and anti-diversity executive orders, the effects will not be isolated to these populations.

“Less data could leave us with gaps in time to inform whether policies and practices are working,” Lisa Cushatt, executive director of Iowa ACES 360 explains.

She went on to state one of the datasets, the Youth Risk Behavior Surveillance System, hasn’t been used in Iowa for years, but “in general, youth data is critical to identify immediate needs and interventions and to inform prevention for health and well-being concerns.”

“I can't overstate how important it is to have publicly available, national datasets,” she said. “Across our states and communities, we need the most current data and information available to more effectively provide support and services that improve well-being. We need to compare to similarly populated states and other states in our region to help understand health trends. If we don't have data today, it is hard to inform and improve health in the future.”

Willette agrees and is worried that some will be even more adversely affected.

“When we take away public data, it makes it harder for kids with disabilities to be safer or have easier access to healthcare. It's just sad. All of this is avoidable with public data.”

One of the executive orders related to the information removal ironically begins “ending radical and wasteful government.” Radical and wasteful both accurately describe the irrational act of obscuring science from our health care and scientist leaders.

Yet Iowa practitioners refuse to be hamstrung and will do the best they can with what they have at their disposal.

Willette explains datasets were downloaded, and other data exists, such as the WHO data.

“There's going to be a big gaping hole for the United States, but we can look at other countries to give us a general idea of what’s happening around the world and then extrapolate that to the U.S.”

And Ward has creatively responded to increased demand for services.

“We started offering 30 minute consultations because people have so many misconceptions about what mental health treatment is,” she said. “People can come in with questions and curiosity and interview us to make sure that we will have good therapeutic rapport.”

She also finds hope in building community.

“I think the most beautiful way to build community is creating spaces for narrative. How can we come together and fill those gaps like we saw with COVID?”

And as one of our northern neighbors said, “The more you try to hide the truth, the more you expose it.”

Chris Espersen is a Gazette editoial fellow. chris.espersen@thegazette.com`