In Absence of National Data on Drug Overdoses, University of Texas Project Turns to Crowd-Sourcing

In Absence of National Data on Drug Overdoses, University of Texas Project Turns to Crowd-Sourcing

In El Paso, Texas, men lined up outside the Corner of Hope, a homeless resource center, eyeing free supplies on plastic shelves inside a white van.

Some wanted bags with toiletries or condoms, but others took kits that help them safely use drugs or naloxone, an opioid overdose reversal medicine.

Gilbert Shepherd, an outreach worker for Punto de Partida, a nonprofit that serves people who misuse drugs, gently questioned those who took the drug safety kits. A man wearing sunglasses and a black T-shirt explained that not long ago he took a pill he bought for $1.50 and, within minutes, he passed out for hours. A man in a plaid shirt and khaki pants described seeing someone overdose after taking a blue pill a month before. Texas Tribune

Those two overdoses would be added to a new Texas database called Texans Connecting Overdose Prevention Efforts, which aims to improve drug overdose tracking across the nation’s second-largest state.

The University of Texas project, known as TxCOPE, is one attempt to solve a problem exasperating officials nationwide who are trying to lower the record number of drug deaths: getting an instant, accurate picture of both nonfatal and fatal drug overdoses. Community groups are now using TxCOPE’s data dashboards and heat maps to see where overdoses are spiking and then target those hot spots with prevention efforts such as naloxone training and supplies, said Christopher Bailey, project coordinator at Project Vida, a health center in El Paso.

It is one of the few projects in the U.S. pooling crowdsourced overdose data from harm reduction groups in a systematic way, according to Leo Beletsky, a public health law expert at Northeastern University. Such projects compensate for the lack of an accurate picture of the decades-long overdose crisis. “It’s scandalous,” Beletsky said.

No national data

More than 107,000 Americans died of drug overdoses in 2021, according to the Centers for Disease Control and Prevention. But there is no national count of how many people survive drug overdoses. The CDC doesn’t even have a standard method that states can use to count nonfatal overdoses. It aggregates overdose data from emergency room visits based on clinical and billing codes from participating states, but that excludes people who don’t interact with the medical system, said Bradley Stein, director of the Rand Opioid Policy Center. It is a “huge blind spot,” Stein said.

Plus, fatal overdose data is often published weeks or months later, once an official medical examiner’s report or toxicology results show what substances caused the deaths. “We’re looking in the rearview mirror with opioids,” Stein said.

Other projects that count nonfatal overdoses, such as ODMAP, rely on reports from law enforcement or first responders. But many drug users won’t call emergency services or report overdoses for fear of arrest, deportation, or other consequences such as the loss of their children or housing due to drug use, said Traci Green, a professor and the director of the Opioid Policy Research Collaborative at Brandeis University.

“Simply put, current national data systems have not kept up with the scale of the overdose epidemic,” wrote Dr. Rahul Gupta, director of the Office of National Drug Control Policy, in a call for action published June 30 in JAMA. He added that building a better data system is essential and that his agency is convening with other federal agencies to improve the tracking of nonfatal overdose data.

Nationally, Green estimated, about 50% of nonfatal overdoses go unreported, with a higher undercount in places with stricter law enforcement and among communities of color. The missing part of the picture “is a very diverse one,” she said.

In Texas, up to 70% of overdoses, mostly nonfatal, go unreported, estimated Kasey Claborn, lead researcher on the TxCOPE project and an assistant professor at UT’s Dell Medical School and Steve Hicks School of Social Work.

Officially, about 5,000 Texans died of a drug overdose in 2021. Claborn believes that is an undercount, too, because the state has medical examiners’ offices in only 15 of its 254 counties. Most counties have justices of the peace who don’t always request pricey toxicology tests to determine the cause of death. The state recorded nearly 4,000 opioid-related calls to the Texas Poison Control Network last year and nearly 8,000 opioid-related emergency room visits in 2020. Claborn is analyzing how the data TxCOPE collects compares with those official statistics.

“How is that helping in a public health emergency?”

Drug experts are frustrated the U.S. doesn’t treat the overdose epidemic with the urgency it does for covid-19. Drug deaths surged during the pandemic as illegal fentanyl, which is 50 to 100 times more potent than morphine, flooded the nation’s street drug supply and people were cut off from substance abuse support. But while public health authorities based pandemic restrictions on local covid caseloads and death counts, experts and outreach workers have lacked real-time data that would allow them to react with interventions that could save drug users’ lives.

“How is that helping in a public health emergency?” said Daniel Sledge, a paramedic testing TxCOPE in Williamson County, just north of Austin.

That information could help health workers identify which areas to blanket with naloxone or whether they need to educate people about a batch of drugs laced with lethal fentanyl.

TxCOPE, funded by the state’s opioid grant and the federal Substance Abuse and Mental Health Services Administration, started in El Paso in June 2021 and then expanded to Austin, San Antonio, and later Williamson County. An official launch is planned for Sept. 1, with a rollout to the rest of the state in stages.

Before the group started, outreach was more haphazard. “It was catch as catch can,” said Bailey, with Project Vida. Like many harm reduction groups, they would informally track overdoses, which often occurred among an itinerant population. But they didn’t have a way to pool that information with other city groups or generate maps to drive outreach. TxCOPE has helped the group find pockets of at-risk people so they can provide them with overdose prevention, peer support, or treatment referrals. Now “you are able to really home in on those areas with laser-like focus,” he said.

Punto de Partida outreach worker Paulina Hijar, for example, said she routinely meets people who injected their friends with dangerous and ineffective homemade overdose remedies — either milk or a mixture of water and salt — or got naloxone and never called authorities. Because outreach workers have built trust in their communities, they say, they can gather information about overdoses, including when and where they occurred, that would normally be omitted from official statistics.

A hidden problem in Texas

Privacy is a key feature of the TxCOPE project — people need to be able to share overdose information without fear of consequences, Claborn said. Texas passed a law in 2021 intended to shield from arrest people who call emergency services during an overdose, but it’s narrowly tailored. People who have a felony drug conviction, for example, don’t qualify. And someone is protected from arrest only once. TxCOPE has a federal certificate of confidentiality that protects it from court orders, and Claborn doesn’t share raw data with the state.

Claborn wants to use the project, which is being revamped this summer before the launch, to bring more federal dollars to the state. “We’ve had difficulty proving there is an actual problem in Texas because it’s been hidden,” she said.

She has been working on a feature that would allow anyone in the community to report overdoses, an effort to improve counts in parts of the state without harm reduction groups. Eventually, Claborn wants to check the crowdsourced data against toxicology reports.

For now, though, the project relies on anecdotal evidence from drug users and others in the community who report reviving someone with naloxone or seeing someone lose consciousness or suffer other effects of taking too much of a drug.

On a recent afternoon, Shepherd and Hijar recognized a man in El Paso’s Houston Park. He told them about a woman who had died alone in her apartment about a week and a half earlier after taking a mixture of drugs. He also mentioned a guy he was able to revive with naloxone about two months earlier. Details were minimal.

Researchers and harm reduction groups say this nebulous data is better than what they’ve had in the past. Even though the project’s anecdotal data isn’t thoroughly vetted, the step toward timeliness is great, Stein said. “We’ve got nothing else right now,” he said.

The Texas Tribune is a nonpartisan, nonprofit media organization that informs Texans — and engages with them – about public policy, politics, government and statewide issues.

Amid Overdose Crisis, Harm Reduction Groups Face Local Opposition

Amid Overdose Crisis, Harm Reduction Groups Face Local Opposition

Casey Malish had just pulled into an intersection in the 2nd Ward when a woman with tattoos and pinkish hair unexpectedly hopped into the back seat of his gray Mazda. He handles outreach for the Houston Harm Reduction Alliance, a nonprofit that helps drug users like her stay alive.

The woman, Desiree Hess, had arranged to meet with him, but Malish, as usual, wasn’t sure what to expect on this recent afternoon. Hess told Malish to take her to near the Value Village thrift store before she explained why she was so frantic.

Earlier that day, around 2 a.m., Hess said, a woman — a “teeny-tiny little girl” — overdosed in the warehouse where Hess was hanging out. No one there could find naloxone, a medicine that reverses opioid overdoses, and the woman’s lips turned blue. Hess said she blew into the woman’s mouth, trying to keep her alive, while others covered her with ice. Finally, someone found some naloxone, often referred to by the brand name Narcan, and sprayed the medication into her nose. After the woman regained consciousness, Hess made a decision. Originally published in Kaiser Health News.

“I knew I had to call Casey,” the 39-year-old recalled, “to get more Narcan.”

Malish drives city streets handing out needles, naloxone, cotton balls, and condoms from the trunk of his sedan. But the Houston Harm Reduction Alliance, which tax records show operates on less than $50,000 annually, can afford to pay Malish only a couple of thousand dollars every now and again. His full-time job is as a research assistant at the University of Texas Health Science Center at Houston.

Malish — a 31-year-old who said he had a problem with alcohol and opioid pills and then heroin before giving them all up nearly 10 years ago — estimated he can reach only about 20 people like Hess a month. Meanwhile, drug overdoses killed 1,119 people in the city last year, according to the Houston Police Department.

President Joe Biden wants to expand harm reduction programs like the one Malish works for as part of a broader strategy to reduce drug overdose deaths, which surged to more than 107,000 nationwide in 2021. But the $30 million plan faces a complicated reality on the ground. In Houston, as in many parts of the country, harm reduction programs operate on the fringes of legality and with scant budgets. Often, advocates like Malish must navigate a maze of state and local laws, fierce local opposition, and hostile law enforcement.

Regina LaBelle, who served as acting director of the Office of National Drug Control Policy until November, credits the Biden White House with being the first presidential administration to openly embrace harm reduction to curb drug overdoses. She said that the $30 million, tucked into the $1.9 trillion American Rescue Plan Act, is still just a first step and that too many groups rely on an unstable patchwork of grants.

“You shouldn’t have to hold bake sales to get people the care that they need,” said LaBelle, who now directs an addiction policy program at Georgetown University.

Plus, the administration faces limits on what it can do when programs face blowback from state legislatures and local leaders. “What you don’t want to do is have the federal government coming in and imposing something on a recalcitrant state,” she said.

Both Republican- and Democratic-led states have legalized aspects of harm reduction, but many remain resistant.

By 2017, all states and Washington, D.C., had loosened access to naloxone, according to Temple University’s Center for Public Health Law Research. Yet, fentanyl test strips — which help people avoid the powerful synthetic opioid or take more precautions when using it — are illegal in about half of states. According to KFF, seven states don’t have a program that provides people with clean needles, which help prevent the spread of HIV and hepatitis C, as well as bacterial infections and embolisms that develop when overused, weak needles break off in a vein. And New York is the only city operating injection sites, where people can use drugs under supervision, although Rhode Island has legalized them and the Justice Department has signaled it may pave the way for more sites to open.

Texas is among the states that have been slow to embrace the interventions — and hasn’t expanded eligibility for Medicaid, so Texans with low incomes have limited access to recovery programs. During the 2021 legislative session, lawmakers scuttled a bill that would have rescinded criminal penalties for possessing drug paraphernalia, items such as clean syringes and fentanyl test strips.

That means the Houston Harm Reduction Alliance operates in a “legal gray area,” said Malish. Although it has tacit support from the Houston police and other local entities, the nonprofit could face trouble if it strayed into a neighboring city.

“Programs that facilitate addictions by providing the tools people need to continue using drugs are not helping our community,” Texas Sen. Ted Cruz, a Republican, wrote to KHN in an email. In February, Cruz criticized Biden’s grant program by saying it would fund “crack pipes for all” in a retweet of a story on a conservative website. Fact checkers debunked the story’s claim, but it continues to provide fodder to opponents of harm reduction practices in state and local governments, even in places where overdose deaths are quickly rising.

Louisiana allows local officials to decide whether to authorize syringe exchange programs, but only four of the state’s 64 parishes allow the services. “We know in the public health space how these programs save lives,” said Nell Wilson, project director for Louisiana’s Opioid Surveillance initiative. “But being a more conservative state, a lot of the problem is battling against wide-ranging misconceptions not based in fact.”

In Kentucky, local public health departments run harm reduction programs, said James Thacker, a program manager at the University of Kentucky’s harm reduction initiative. In some parts of the state, local law enforcement agencies support programs. In others, they enforce laws that consider fentanyl test strips illegal drug paraphernalia.

Harm reduction programs face backlash in progressive places, too, such as San Francisco, where some residents believe they foster drug use.

Still, state and local harm reduction groups say the Biden administration’s $30 million grant isn’t enough money to expand their programs to reach the number of people who need help.

“We were disappointed by that number,” said Cate Graziani, co-executive director of the Texas Harm Reduction Alliance, which sought the maximum $400,000 in funding but wasn’t among the two dozen organizations to receive grants. Her group planned to distribute the funds to local outposts such as the Houston Harm Reduction Alliance.

“These programs are still running on a shoestring,” said Leo Beletsky, a public health law expert at Northeastern University. “That is not how public health is supposed to be done.”

Advocates for harm reduction don’t believe such efforts alone will suddenly halt overdose deaths. Addiction is a complicated, chronic disease. And in 2021, overdose deaths jumped 15% from a year earlier, according to the Centers for Disease Control and Prevention. Today, illegal fentanyl and its analogs from Mexico and China have tainted the street supply of counterfeit pills, heroin, and even stimulants like cocaine and methamphetamine, causing both casual users and those with long-term addiction to overdose and die.

“No one thing is going to solve the overdose crisis, but this is going to save a lot of people’s lives,” Dr. Nora Volkow, director of the National Institute on Drug Abuse at the National Institutes of Health, said about harm reduction efforts.

Many of Malish’s clients talk about wanting to quit drugs. People who use syringe services programs are five times as likely to start treatment and three times as likely to stop using drugs, according to the CDC.

As Malish drove Hess past the Value Village to the abandoned strip mall where she usually lives, she said she plans to start methadone treatment for heroin addiction as soon as she can get an ID the city offers to people without housing.

“I’m so sick of seeing my friends die,” said Hess.

When she got out of Malish’s car, he loaded her arms with boxes of syringes, sterile water, injectable naloxone, tourniquets, and fentanyl test strips for her to share with others.

Hess then asked Malish if she could take two quarters she found in the seat cushions of his car to buy drinking water, before walking through the mall’s double doors.

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