A Free-for-All From Readers and Tweeters, From Medical Debt to Homelessness

KHN gives readers a chance to comment on a recent batch of stories.

Letters to the Editor is a periodic feature. We welcome all comments and will publish a selection. We edit for length and clarity and require full names.

It is appalling that an article like this even has to be written. Our "healthcare" system is broken.How to get rid of medical debt — or avoid it in the first place https://t.co/EIo7lHps8k

— Karin Wiberg (@kswiberg) July 1, 2022

— Karin Wiberg, Raleigh, North Carolina

Lifesaving Information

I just want to thank you from the bottom of my heart for the work you do that exposes the utter brokenness of America’s health system (“Diagnosis: Debt: How to Get Rid of Medical Debt — Or Avoid It in the First Place,” July 1). You are helping to fix it!

— Ruth Worley, Athens, Ohio

Recovering from being sick or caring for a sick loved one should not ruin any American’s finances. Here are some tactics to navigate the system. https://t.co/ykvDkUecj0

— Bayeté (@BayeteKenan) July 10, 2022

— Bayeté Ross Smith, Harlem, New York

Patients Left Holding the Bag

Your “Diagnosis: Debt” articles are interesting and serve as further examples of how the health care industry is set up for the health care system and not the people who use it.

In the USA, medical debt should not be an issue, but we don’t teach people how to save or understand how to navigate the system. I am a nurse blogger/advocate and see the repercussions of what people go through who have inadequate insurance and lack savings or the ability to understand what is happening to them when they are thrust into the complex health care system. But, in reality, none of us really think about our health or the health care system till we are in the middle of a crisis. If we are honest, none of us are really prepared for a catastrophic event, and this is what we need to work on going further through education and advocacy.

I will continue to educate the public in my small way so people can understand their role in our health care system so they are prepared for a medical event and know that they can use their voice to speak up and advocate for themselves.

— Anne Llewellyn, Plantation, Florida

Portland has become a wasteland! Where are the environmentalists at least? Oh yeah, they're all in their gated communities, worrying about climate change and plastic straws for the rest of us. (hope you can see this LA Times article)https://t.co/WrboM9vtPs

— Bob Beddingfield (@bobbeddingfield) June 23, 2022

— Bob Beddingfield, Houston

Destination: Disaster

We visited Portland, Oregon, a year ago for a vacation and we will never go back: stores that don’t give baskets because people use them to steal. Stores that put poles on carts to keep people from racing out of the store with them full of merchandise. Closed storefronts. Homeless people everywhere (“Sobering Lessons in Untying the Knot of a Homeless Crisis,” June 21).

It was like a Third World country. I’m not a Republican, very far from it, but accepting the idea that anyone who wants can live on the streets, dump their trash, and get subsidized by the city cannot end well. And this problem is not limited to Portland. San Francisco is in a very similar situation with crime, drug abuse, and homelessness.

There is no one-size-fits-all solution. Throwing money at the problem and then ignoring the continuing unresolved problem hasn’t worked and, I think, never will.

The idea that a city can host an unlimited number of drug and alcohol addicts at public expense won’t work.

The idea that shoplifting, car break-ins, robberies, etc. are allowed, not arrested, not prosecuted, not punished can never work out well.

And people wonder why the Democrats are in such deep, deep trouble in spite of the horrible ideas the Republicans promote.

This will not end well.

— David Alexander, Palo Alto, California

Quite possible the best news story about our local homeless challenges I have read recently. 'Not safe anymore': Portland confronts the limits of its support for homeless services #homless #Portland https://t.co/Ujr5KzhYAi

— Ben Brown Jr. (@BenBrownJunior) June 22, 2022

— Ben Brown Jr., Beaverton, Oregon

On Wheelchair Repairs, Steering Clear of Error

As the CEO of National Seating & Mobility (NSM), I applaud the work of KHN in providing in-depth reporting about important issues in health care, including the complex rehabilitation technology (CRT) industry.

However, the recent article “Despite a First-Ever ‘Right-to-Repair’ Law, There’s No Easy Fix for Wheelchair Users” (June 2) presented several inaccuracies, misrepresentations, and errors in its characterization of NSM and our work.

The article stated that NSM and other CRT providers have limited their investments in service and repair to increase profits. NSM leadership has continuously invested in our service and repair business, including establishing a career path and certification program to professionalize the service technician role, improving onboarding and ongoing training programs, reorganizing our funding team to introduce repair-specific funding specialists to better assist clients in the repair process, investing in market analysis on competitive wages that resulted in a 15%-20% hourly pay increase for technicians, and more. In 2022, NSM has almost 500 service technicians on staff, which is 22% more technicians per count of client-delivered orders versus 2019. Our investment in service and repair is long-standing and will continue.

The article also suggested that Medicare’s use of competitive bidding favors large companies, often at the expense of quality and customer service. NSM was not part of the previous bidding session for durable medical equipment (DME) to establish current rates and was not awarded any Medicare contracts as a result. Most of the products we provide are considered CRT and are exempt from the competitive bid process and pricing. Due to section 16005 of the 21st Century Cures Act and House Bill H.R. 1865, product codes that can be used for CRT or basic DME are paid at the normal rate for CRT instead of competitive pricing.

Finally, the article makes false assumptions about our company: that we keep a limited inventory of parts, and we have little incentive to hire technicians or pay for training because we lose money with repairs.

Each mobility solution — and therefore each repair—is highly customized to a client’s needs. This customization means parts that are replaced less frequently across our client population aren’t likely to be stocked versus those parts that are frequently replaced. The current global supply chain disruption has also affected our inventory; the amount of stock we have on hand is entirely dependent upon availability. Additionally, the labor shortage our country is experiencing has created a challenge across all industries, ours included.

Repair reimbursement is a loss-leader for the CRT industry, exacerbated recently due to inflation in the supply chain and labor markets. While other companies are forced to turn down repairs due to these challenges, NSM continues to provide repairs because it is the right thing to do.

NSM is a customer service business, earning our business in every client interaction. We recognize improvements are needed, and we are committed to investing in advocacy, programs, and collaborative industry efforts to lead our industry in a new direction to improve the lives of those we serve.

— Bill Mixon, CEO of National Seating & Mobility, Franklin, Tennessee

This needs to change! It should not be so complicated to get simple repairs made to #wheelchairs!https://t.co/MpTAyeBEms via @KHNews #DisabilityRights

— W. Ron Adams (@WRonAdams) June 11, 2022

— W. Ron Adams, Erlanger, Kentucky

These folks have also worked so hard to get landmark legislation passed across the country, including a really important first step in Colorado on the right to repair wheelchairs: https://t.co/xaZPRnaYDD

— Hayley Tsukayama (@htsuka) June 3, 2022

— Hayley Tsukayama, San Francisco

Clearing the Air on Vaping vs. Smoking

I just listened to your piece on the FDA banning Juul (“KHN’s ‘What the Health?’: The FDA Goes After Nicotine,” June 23). One of your panelists mentioned she’d read (actually, she said she’d read only the headline) about diacetyl (she didn’t want to even try to pronounce this) and popcorn lung.

I believe it is irresponsible for so-called scientific experts to comment on things they haven’t read properly and things they clearly have no knowledge about. Diacetyl is present in cigarette smoke in concentrations hundreds of times higher than in vape products and yet there hasn’t been a single case of popcorn lung attributed to smoking. Anything to do with the toxicity of a chemical present must surely make reference to the concentrations, putting it in context. The fact that a chemical is detectable obviously doesn’t mean that it’s harmful in the concentrations present.

There is a terrible misunderstanding among consumers and indeed health care professionals regarding the relative harms of vaping vs. smoking — given that the vast majority of vapers are ex- or current cigarette smokers, this is the relevant point.

I suggest that the scientific credibility of your program is compromised by such sloppy and inaccurate commentary.

— Mark Dickinson, Twickenham, Middlesex, United Kingdom

Be wary when big companies come in to "save" local institutions, whether it be the hometown newspaper, local education or the hospital.https://t.co/gV4ZJDkR71

— Dave Gragg (@DaveGragg) June 15, 2022

— Dave Gragg, Republic, Missouri

Shoring Up Rural Care

Since 2010, 138 rural hospitals have closed, leaving many communities without access to health care. In rural areas, this can create a domino effect of other hardships — a hospital often serves as the largest employer, and when these facilities shut down, the hardware store or restaurants often face similar fates. Put simply, when a rural hospital shutters, it becomes harder for the town itself to survive (“Patients for Profit: Buy and Bust: When Private Equity Comes for Rural Hospitals,” June 15).

Then there is the most critical aspect: Without hospitals, rural Americans lose timely access to lifesaving medical care. On average, the distance between a rural hospital and the closest facility with 100 or more acute care beds is 28.9 miles. Preserving access to care in our rural communities and ensuring hospitals remain the cornerstone of the economy is essential. This is why addressing the hospital closure crisis must be a top priority in Congress.

To determine what needs to be done, it can be helpful to examine the cause of the crisis. Multiple factors have contributed to the high number of rural hospital closures over the past decade, with two major factors being slim or negative hospital operating margins and workforce shortages. The covid-19 pandemic has further strained the health care industry, leading to increased levels of provider burnout and perpetuating the workforce shortage.

On top of this, rural providers continue to feel the strain of Medicare sequestration, which reduces eligible payments to rural hospitals from Medicare by 2%. Relief from Medicare sequestration during the pandemic expired on April 1, contributing to the financial burdens rural hospitals already face. With many rural hospitals already operating on negative margins, these decreased reimbursements could be disastrous.

Further, due to recent statutory changes, provider-based rural health clinics affiliated with small rural hospitals are not eligible for cost-based reimbursement as they historically were. Unless Congress addresses this shortcoming, it may not be financially feasible for small rural hospitals to provide primary care in these settings, and care gaps in rural communities may widen.

Reps. Sam Graves, a Republican from Missouri, and Jared Huffman, a Democrat from California, worked together to introduce the Save America’s Rural Hospital Act. This legislation will help rural health care providers keep their doors open and ensure rural communities have access to the care they need and deserve.

For example, it will permanently eliminate Medicare sequestration for rural hospitals, allowing these facilities to be reimbursed for the entirety of their eligible cost. It will make permanent increased Medicare payments for ground ambulance services in rural and super rural areas. Further, this bill will reauthorize the Medicare Rural Hospital Flexibility Program to provide new grants to help eligible rural providers transition to new models and evolve to meet community needs in their changing health care environments.

To address potential primary care shortages, it will also create a voluntary quality measure reporting program for provider-based rural health clinics. If these facilities choose to participate, they will receive increased reimbursement in exchange.

Health care access is critical to preserving the rural way of life for more than 60 million rural Americans. This legislation must be considered to ensure stability in our communities, which will ultimately benefit the country as a whole.

— Alan Morgan, CEO of NRHA, Kansas City, Missouri

In short, our system is not set up for the unique needs of rural hospitals, making them financially stretched. Private equity swoops in, buys the hospital, takes the COVID-19 relief money, closes the hospital, then runs. #ruralhealth https://t.co/qZBHG7yeeH

— Whitney Zahnd (@WhitneyZahnd) June 15, 2022

— Whitney Zahnd, Iowa City, Iowa

A Pitch for Integrated Behavioral Health

I am a clinical psychologist who works at a large, safety-net academic health center in Colorado. I am writing about your recent article “Patients Seek Mental Health Care From Their Doctor but Find Health Plans Standing in the Way” (June 8). I appreciate the focus of this article on some of the barriers patients face in trying to access mental health care in the U.S. However, I was a little concerned that your article did not mention the rapidly growing field of integrated behavioral health. Although I understand that not all primary care providers’ offices employ an integrated behavioral health clinician, the numbers are growing quickly across the country. For example, in the hospital where I work, there is at least one IBH clinician in every community primary care center, and in most of the specialty clinics (e.g. oncology, OB-GYN) as well.

While I think PCPs are certainly able to dispense basic-level mental health advice (e.g., abdominal breathing exercises for anxiety), I don’t think the answer is to turn over mental health care to medical professionals, any more than I believe it would be a good idea to turn over a patient’s diabetes management to a psychologist, even if that psychologist had some basic training in how to treat diabetes. Instead, I believe it is in patients’ best interests to continue to advocate and nurture a team-based approach that includes both medical and mental health specialists within the same clinic.

— Trina Seefeldt, Denver

This madness must stop. Most of us in primary care do address/treat mental health problems. #insurance #healthcare #SinglePayer would solve this. Patients Seek Mental Health Care From Their Doctor But Find Health Plans Standing in the Way https://t.co/YyAzJ0GylL via @khnews

— Andrea DeSantis DO (@adesantisb) June 10, 2022

— Dr. Andrea DeSantis, Charlotte, North Carolina

In Defense of Free Clinics

I was reading with interest — and then dismay — at your article published June 23 on the Hispanic insurance gap (“Trump’s Legacy Looms Large as Colorado Aims to Close the Hispanic Insurance Gap”). In the opening paragraphs, you reference a man who had symptoms that “free clinics told him were hemorrhoids but were actually colon cancer.”

In that one phrase, you single-handedly and forcefully implied that free clinics deliver poor care and are not to be trusted. With the next sentence about his tragic death, you solidify that implication.

As a charitable clinic with more than 26 years of serving the uninsured in our community, I take great exception to this careless mischaracterization of a sector that has delivered high-quality care to millions of people who have fallen through the cracks.

Most free and charitable clinics care for people with absolutely no insurance. This can significantly limit the amount of outside testing and diagnostics that can be done with patients, even if they are symptomatic. Up until this year, our clinic had absolutely no option for sending someone to a gastroenterologist for a colonoscopy unless they were willing to pay out-of-pocket — upward of $5,000. We have to regularly tell people that we do not have any good options for them because we cannot access certain specialists or tests. Do they need it? Yes. Can we provide it to them? No. Does this incredible inequity and frustration with the health care system that prevents our patients from getting the advanced care they need weigh on us every day? Absolutely.

Free and charitable clinics are not part of the problem. They are part of the solution. And the broad generalization you made impacts how the public perceives this incredibly important piece of the health care sector.

For more information on free and charitable clinics, I invite readers to learn about the National Association of Free and Charitable Clinics at https://nafcclinics.org/.

— Suzanne Hoban, executive director of Family Health Partnership Clinic, Crystal Lake, Illinois

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Datos de las sobredosis, obtenidos por colaboración colectiva, resaltan en dónde hace falta la ayuda

El proyecto de la Universidad de Texas, llamado TxCOPE, busca resolver un problema que mantiene en vilo a los funcionarios de todo el país en su esfuerzo por reducir el número récord de muertes por drogas: obtener una imagen clara y precisa de las sobredosis no mortales y mortales.

EL PASO, Texas – Los hombres hacían fila en el exterior de Corner of Hope, un centro de recursos para personas sin hogar, esperando recibir los productos gratuitos que distribuía una furgoneta blanca.

Algunos querían bolsas con artículos de aseo personal o preservativos, pero otros se llevaban kits que los ayudan a consumir drogas de forma segura, o naloxona, un medicamento para revertir una sobredosis de opioides.

Gilbert Shepherd, trabajador social de Punto de Partida, una organización sin fines de lucro que atiende a las personas que hacen uso indebido de las drogas, interroga amablemente a quienes se llevan los kits de seguridad. Un hombre con anteojos de sol y camiseta negra le explicó que, no hace mucho, se tomó una pastilla que compró por $1,50 y perdió el conocimiento durante horas. Otro, con camisa a cuadros y pantalones caqui, contó haber visto a alguien sufrir una sobredosis tras tomar una pastilla azul.

Esas dos sobredosis se añadirán a una nueva base de datos de Texas llamada Texans Connecting Overdose Prevention Efforts, cuyo objetivo es mejorar el seguimiento de las sobredosis de drogas en el segundo estado más grande del país.

El proyecto de la Universidad de Texas (UT), conocido como TxCOPE, busca resolver un problema que mantiene en vilo a los funcionarios de todo el país en su esfuerzo por reducir el número récord de muertes por drogas: obtener una imagen clara y precisa de las sobredosis no mortales y mortales.

Los grupos comunitarios utilizan ahora los paneles de datos y los mapas de calor de TxCOPE para ver dónde aumentan las sobredosis, y dirigir así los esfuerzos de prevención a esos puntos conflictivos, con suministros de naloxona y personal que explique cómo usarla, dijo Christopher Bailey, coordinador de Project Vida, una clínica de El Paso.

Se trata de uno de los pocos proyectos en Estados Unidos que reúne datos de sobredosis recopilados de forma sistemática por grupos de reducción de daños (es decir, obtenidos por crowdsourcing), según Leo Beletsky, experto legal en salud pública de la Northeastern University. Estos proyectos compensan la falta de una imagen precisa de la crisis de sobredosis que dura décadas. “Es un escándalo”, añadió Beletsky.

Más de 107,000 estadounidenses murieron por sobredosis en 2021, según los Centros para el Control y la Prevención de Enfermedades (CDC). Pero no hay un recuento nacional de cuántas personas sobreviven a las sobredosis de drogas. Los CDC ni siquiera tienen un método estándar que los estados puedan utilizar para contar las sobredosis no mortales. Suma los datos de sobredosis de las visitas a las salas de urgencias basándose en los códigos clínicos y de facturación de los estados participantes, pero eso excluye a las personas que no interactúan con el sistema médico, señaló Bradley Stein, director del Rand Opioid Policy Center. Se trata de un “enorme punto ciego”, según Stein.

Además, los datos de sobredosis mortales suelen publicarse semanas o meses después, una vez que el informe oficial del médico forense o los resultados toxicológicos muestran qué sustancias causaron las muertes. “A los opioides los miramos por el retrovisor”, añadió Stein.

Otros proyectos que contabilizan las sobredosis no mortales, como el ODMAP, se basan en los informes de las fuerzas del orden o de los primeros intervinientes. Pero muchos consumidores de drogas no llaman a los servicios de emergencia ni informan de las sobredosis por miedo a ser arrestados, deportados o a otras consecuencias, como la pérdida de sus hijos o de su vivienda debido al consumo de drogas, afirmó Traci Green, profesora y directora de la Opioid Policy Research Collaborative de la Universidad de Brandeis.

“Los actuales sistemas nacionales de datos no han estado a la altura de la magnitud de la epidemia de sobredosis”, escribió el doctor Rahul Gupta, director de la Oficina de Política Nacional de Control de Drogas, en un llamamiento a la acción publicado el 30 de junio en JAMA. Añadió que es esencial crear un mejor sistema de datos y que su organismo se ha reunido con otras agencias federales para mejorar el seguimiento de los datos sobre sobredosis no mortales.

Green calcula que, a nivel nacional, un 50% de las sobredosis no mortales no se notifican, y que el recuento es mayor en los lugares donde la aplicación de la ley es más estricta y en las comunidades de color. La parte que falta en esta historia “es la de la diversidad”, apuntó.

En Texas, hasta el 70% de las sobredosis, en su mayoría no mortales, no se denuncian, estimó Kasey Claborn, investigadora principal del proyecto TxCOPE y profesora de la Facultad de Medicina Dell y de la Facultad de Trabajo Social Steve Hicks de la UT.

Según cifras oficiales, unos 5,000 tejanos murieron de sobredosis en 2021. Claborn cree que es un recuento insuficiente porque el estado tiene oficinas de examinadores médicos en solo  15 de sus 254 condados. La mayoría de los condados tienen jueces de paz que no siempre solicitan las costosas pruebas de toxicología para determinar la causa de la muerte.

El estado registró casi 4,000 llamadas relacionadas con los opioides a la Red de Control de Venenos de Texas el año pasado y casi 8,000 visitas a las salas de emergencia relacionadas con los opioides en 2020. Claborn analiza cómo se comparan los datos que recoge TxCOPE con esas estadísticas oficiales.

Los expertos en drogas han mostrado su frustración porque consideran que Estados Unidos no trata la epidemia de sobredosis con la misma urgencia que covid-19. Las muertes por drogas se dispararon durante la pandemia, ya que el fentanilo ilegal, que es entre 50 y 100 veces más potente que la morfina, inundó el suministro de drogas en las calles del país y la gente se quedó sin apoyo por abuso de sustancias.

Pero mientras las autoridades de salud pública basaban las restricciones de la pandemia en el número de casos locales de covid y en el recuento de muertes, los expertos y los trabajadores sociales carecían de datos en tiempo real que les permitieran reaccionar con intervenciones que pudieran salvar las vidas de los consumidores de drogas.

“¿Cómo ayuda eso en una emergencia de salud pública?”, se preguntó Daniel Sledge, un paramédico que ha puesto a prueba TxCOPE en el condado de Williamson, al norte de Austin.

Esa información podría ayudar a los trabajadores sanitarios a identificar qué zonas deben cubrirse con naloxona o si necesitan educar a la gente sobre drogas mezcladas con fentanilo letal.

TxCOPE, financiado por la subvención estatal contra los opioides y la Administración Federal de Servicios de Salud Mental y Abuso de Sustancias, comenzó en El Paso en junio de 2021 y luego se amplió a Austin, San Antonio y, posteriormente, al condado de Williamson. El lanzamiento oficial está previsto para el 1 de septiembre, con un despliegue al resto del estado en etapas.

Antes de que el grupo se pusiera en marcha, la difusión era más aleatoria. Se trataba de “atrápame como se pueda”, dijo Bailey, del Project Vida. Al igual que muchos grupos de reducción de daños, hacían un seguimiento informal de las sobredosis, que a menudo se producían entre una población itinerante.

Pero no tenían una forma de poner en común esa información con otros grupos de la ciudad ni de generar mapas para impulsar el alcance comunitario. TxCOPE ha ayudado al grupo a encontrar personas en riesgo para poder ofrecerles prevención de sobredosis, apoyo entre pares o derivaciones a tratamientos. Ahora “podemos centrarnos realmente en esas zonas, enfocados como un láser”, apuntó Bailey.

Paulina Hijar, trabajadora social de Punto de Partida, por ejemplo, contó que se encuentra habitualmente con personas que inyectaron a sus amigos con remedios caseros contra sobredosis que son peligrosos e ineficaces —leche o una mezcla de agua y sal— o que consiguieron naloxona y nunca llamaron a las autoridades. Aseguran que gracias a que los trabajadores sociales se han ganado la confianza de sus comunidades, ahora pueden recopilar información sobre las sobredosis, incluyendo cuándo y dónde se produjeron, algo que normalmente se omitiría en las estadísticas oficiales.

La privacidad es una clave del proyecto TxCOPE: las personas necesitan poder compartir información acerca de las sobredosis sin temor a las consecuencias, indicó Claborn. Texas aprobó en 2021 una ley para proteger a las personas que llamen a los servicios de emergencia durante una sobredosis, pero su alcance es muy limitado. Las personas que tienen una condena por delito de drogas, por ejemplo, no califican. Y alguien está protegido de la detención solo una vez. TxCOPE cuenta con un certificado federal de confidencialidad que lo protege de las órdenes judiciales, y Claborn no comparte los datos generales con el Estado.

Claborn quiere utilizar el proyecto, que está siendo renovado este verano antes de su lanzamiento, para traer más dólares federales al estado. “Hemos tenido dificultades para demostrar que existe un problema real en Texas, porque se ha ocultado”, afirmó.

Ha estado trabajando en una función que permitiría a cualquier persona de la comunidad informar de las sobredosis, un esfuerzo para mejorar los recuentos en las partes del estado que no cuentan con grupos de reducción de daños. Con el tiempo, Claborn quiere cotejar los datos obtenidos por el público con los informes toxicológicos.

Por ahora, sin embargo, el proyecto se basa en las pruebas anecdóticas de los consumidores de drogas y otras personas de la comunidad que informan de que han reanimado a alguien con naloxona, o que han visto a alguien perder el conocimiento, o sufrir otros efectos de tomar demasiada droga.

Una tarde reciente, Shepherd e Hijar reconocieron a un hombre en el parque Houston de El Paso. Les habló de una mujer que había muerto sola en su apartamento hacía una semana y media tras tomar una mezcla de drogas. También mencionó a un individuo al que pudo reanimar con naloxona unos dos meses antes. Los detalles fueron mínimos.

Los investigadores y los grupos de reducción de daños dicen que estos datos imprecisos son mejores que los que han tenido en el pasado. Aunque los datos anecdóticos del proyecto no se han comprobado a fondo, se trata de un gran paso hacia adelante, dijo Stein. “No tenemos nada más en este momento”, concluyó.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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Crowdsourced Data on Overdoses Pinpoints Where to Help

University of Texas researchers are testing a program that would allow harm reduction groups to crowdsource data on fatal and nonfatal drug overdoses statewide. While the data relies on word of mouth, they say, it is more comprehensive than anything that exists now and can be used immediately to prevent overdoses.

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.

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.

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.

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 laserlike 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.

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.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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