Lauren Peace, Tampa Bay Times, Author at Ģ��ӰԺ Health News

A Paramedic Was Skeptical About This Rx for Stopping Repeat Opioid Overdoses. Then He Saw It Help.

Lauren Peace, Tampa Bay Times — Mon, 25 Mar 2024 09:00:00 +0000

OCALA, Fla. — Fire Capt. Jesse Blaire steered his SUV through the mobile home park until he spotted the little beige house with white trim and radioed to let dispatchers know he’d arrived.

There, Shawnice Slaughter waited on the steps, wiping sleep from her eyes.

“Good morning, Shawnice,” Blaire said. “How are you feeling today?”

“I’ve been good, I’ve been good,” Slaughter said. “Much better.”

Three days earlier, Blaire — a paramedic who leads the fire department’s emergency medical team — met Slaughter at a nearby hospital. She had overdosed on opioids. It took four vials of an overdose reversal medication and dozens of chest compressions to get her breathing again.

At the hospital, Blaire told Slaughter about a free program that could help. It wouldn’t just connect her with a recovery center but would also get her doctors’ appointments, plus rides there. More important, she would get medicine to alleviate withdrawal symptoms so she wouldn’t search for drugs to ease the sickness. Blaire would bring that medication, daily, to her home.

“I have a son,” Slaughter, 31, told Blaire. “I need to be alive for him.”

Every morning since, Blaire had driven over for a check-in. He reminded Slaughter of appointments and took note of what she needed: clothes, food, help with bills.

And at the end of each visit, from a lockbox in the back of his car, he dispensed to her a couple of tiny, lifesaving tablets.

Those tablets — a medicine called buprenorphine — represent a tidal change in the way counties in Florida and other states are addressing the opioid crisis. The idea: Get addiction medication to people who need it by meeting them where they are. Sometimes, that’s on the street. Sometimes, it’s in the driveway of a big house with a swimming pool. Sometimes on the steps of a modest home like Slaughter’s.

***

For a long time, many people who could benefit from buprenorphine, commonly known by the brand name Subutex, couldn’t get it.

Until recently, doctors needed a federal waiver to prescribe it to treat opioid use disorder. Amid misconceptions about treating opioid use disorder with medication, only about 5% of doctors nationally underwent the training to qualify. And in 2021, only who could have benefited from opioid addiction medication were receiving buprenorphine or another drug therapy.

But as evidence supporting the drug’s efficacy grew and the urgency mounted to curb opioid deaths, Congress axed the waiver requirement in late 2022, clearing the way for greater availability.

And in rare cases, such as in Ocala, medics on the front lines began bringing treatment to patients’ front doors.

In Florida, the state-run Coordinated Opioid Recovery Network, known as the CORE Network, provides guidelines on medicine distribution to areas hit hard by overdoses. Services through the network are free for patients, funded by money from the state’s opioid settlement.

The network looks different in each of its 13 counties. Not all hand-deliver buprenorphine. But the common goal is to create a single entry point for services that have typically been siloed and difficult for patients to navigate, such as mental health care and housing support.

In a recovery landscape rife with shoddy facilities and prohibitive price tags, simplifying the path for patients stands to make a meaningful difference.

“We know that the more people are in contact with services, the more they’re treated with respect, the more likely they are to reduce or cease drug use,” said , a public health professor at Johns Hopkins University.

As opioid settlement dollars continue to come in, state officials have said they hope to expand to more counties.

***

Becoming a firefighter and paramedic satisfied Blaire’s craving for adrenaline and his conviction, informed in part by his Christian background, that he was put on this Earth to help others.

At 20, he imagined responding to car crashes and heart attacks, broken bones and punctured flesh. But after years on the job with Ocala Fire Rescue, the calls began to change.

At first, Blaire felt some resentment toward the people overdosing. His team was suddenly responding to hundreds of such calls a year. He viewed drug use as a moral failure. What if a grandmother had a heart attack or a kid drowned while his team was on an overdose call?

Unlike with other emergencies, he never really felt he was saving a life when responding to an overdose. It was more like delaying death.

Over and over, he’d pump a patient full of naloxone, an overdose reversal medication often known by one of its brand names, Narcan, and drop them at the hospital, only to find they’d overdosed again after being discharged. One Christmas, he said, he responded to the same person overdosing five times on a single shift.

“I didn’t understand it. I thought that they wanted to die,” said Blaire, 47. “I’m embarrassed to say that now.”

About a decade ago, the scope of the epidemic had already come into full view to Blaire’s crew. It seemed the team was responding to overdoses at big houses in wealthy neighborhoods nearly as often as they were in the park and under the bridge.

One week, his team went to a home on a cul-de-sac with two kids and a swing set — the kind of place families take their children trick-or-treating.

The dad had overdosed. The next week, it was the mom.

“Money can mask any problem, but we’ve seen it from the top to the bottom,” Blaire said.

Over time, Blaire began to understand addiction as the disease it is: a physiological change to someone’s brain that traps them in a dangerous cycle. Maybe it started with a prescription painkiller after surgery, or an indulgence at a party, but the majority of people weren’t using drugs to get high, he realized. They were using them to avoid being sick.

“Imagine the worst flu you’ve ever had, then make it a lot worse,” Blaire said.

When a person dependent on opioids stops taking them, their body goes into withdrawal, often accompanied by shakes, nausea, fever, sweating, and chills. Though rare, people . Still, historically, the emergency health care system has focused on reversing overdoses, rather than treating the withdrawal side effects that keep people returning to drugs.

In the past, Blaire said, he saw patients released from the hospital with little more than a phone number for a recovery center. Getting an appointment could be challenging, not only because of wait times or insurance complications, but because the patients weren’t stable — they were in withdrawal. To make it through the day, Blaire said, they’d often use again.

“‘Good luck, you’re on your own,’” Blaire said. “That’s how it was. And that doesn’t work for somebody who is sick.”

Under Blaire’s leadership, Ocala Fire Rescue sought to stop the revolving door by launching its Community Paramedicine program and the Ocala Recovery Project in 2020.

They modeled it after overdose quick-response teams around the country, which vary in makeup. These mobile teams, typically helmed by paramedics like Blaire, connect people who have overdosed with services aimed at stabilizing them long-term. On some, a registered nurse embeds with paramedics in an ambulance or SUV. Others have a therapist or peer recovery coach on board. Some are bare-bones: a single responder with a phone on 24 hours a day. Some get in touch with patients through a call or a home visit after a reported overdose.

Others, like Blaire’s team, intercept patients at the hospital.

Blaire likens the system to that of a trauma alert — a message sent to medical centers to ready a response to near-fatal car wrecks or shootings. When a trauma alert goes out, operating tables are cleared, CT scanners are prepped, and responders stand by for arrival.

“We set the same system up for overdoses,” Blaire said.

Now, when somebody in Ocala overdoses, whether it’s on opioids, alcohol, meth, or cocaine, an alert goes out, notifying Blaire and his team, a peer recovery coach, a behavioral health specialist, and a local recovery center.

His team usually beats the ambulance to the hospital.

The next day, team members follow up at the patient’s home.

Then, last May, under the guidance of the EMS medical director, Blaire’s team started offering addiction medication to opioid users, too.

Since then, Blaire said, his team has connected 149 patients with treatment. Only 28 of them have needed additional intervention, he said.

***

When Blaire first heard about buprenorphine, he was skeptical.

How could giving somebody with an addiction more narcotics help?

That common response misunderstands the reality of addiction, said , director of the National Institute on Drug Abuse.

People perceive that one drug is being substituted for another, Volkow said. Instead, the use of medications like buprenorphine is more akin to those that treat other psychiatric conditions, like mood disorders or depression.

Research shows that opioid addiction medication — including drugs like methadone — can greatly of overdose deaths, and increase a person’s retention in treatment. But a Grossman School of Medicine found that nearly 87% of people with opioid use disorders don’t receive any.

Such addiction medications work by stimulating opioid receptors in the brain.

Opioids — like oxycodone or fentanyl — are what experts refer to as “full agonists.” Imagine an opioid receptor as a rounded bowl. A full agonist — like fentanyl — fits perfectly in that bowl and latches tightly to the receptor.

Buprenorphine is a “partial agonist.” It fits in the bowl — and satiates a craving — but doesn’t completely bind like a full agonist. Instead, it eliminates withdrawal symptoms so people won’t get sick or crave illicit drugs, without producing a high. Second, it counteracts the effects of other drugs, so a person can’t overdose on other opioids like fentanyl or heroin while taking it.

And for somebody who already uses opioids, overdosing from buprenorphine is nearly impossible.

“They help a person regain control of their everyday life,” Volkow said.

***

On this Monday in January, Blaire pulled into Beacon Point, a local treatment center, just past 2 p.m.

He’d spent his morning calling on people like Slaughter, but now he was meeting paramedics from his team. After nearly three weeks of home visits, a man in the recovery network program was set to have his first appointment with a doctor.

Blaire has found that once people are stable on buprenorphine, more often than not they want to get into a treatment program.

While Blaire waited, a woman walking out of the center approached, smiling.

“I just got my first clean urine analysis,” she said. “I’m doing great, I’m so excited.”

“That’s awesome news,” Blaire said, a smile stretched across his face. He’s often stoic, straight-laced, with combed hair and aviators. But when he lights up, his all-business exterior gives way to gentleness.

Jacqueline Luciano is sober for the first time in 30 years. She’s proud, glowing, and Blaire is proud, too.

Luciano first came to Blaire through a referral when she was living at a women’s shelter. She said she had $20 in her pocket and wanted to get high — needed to.

Fentanyl withdrawal had left her shaky and cold. Her stomach was seizing, her muscles spasming. To quell the agony that day in early January, she went on the hunt.

Luciano said she had first used drugs when she was 9. Her family had been torn apart by pills and powders, she said, a sickness she’d inherited.

But this time, a woman — “like an angel” — passed her a number for someone who she promised could guide her into a brighter future, blame-free. Luciano, 39, paused, skeptical.

Then she gave Blaire a call.

For about a week, Blaire delivered her a daily dose of buprenorphine using a Safe RX bottle — essentially a trackable pill bottle with a lock code to limit who can open it. He helped connect her with food and clothing donations.

And as Luciano started to feel more like herself, absent of cravings, she began to hope.

Blaire got her an appointment with doctors at Beacon Point, then drove her to her first screening. Now, in the parking lot, she thanked him for everything.

“It made all the difference in the world,” Luciano told Blaire. “I really didn’t think that I could get better. I didn’t. But I am.”

As a tear rolled down Luciano’s face, Blaire’s phone rang.

***

The call came from the health department. A man in his 40s or 50s had come some 40 miles from Gainesville, Florida, for help, steered through word of mouth.

He’d tried to get into a recovery center there but said he was turned away. Something about insurance and a criminal record had stood in the way.

It’s a pattern that drives Blaire crazy. He’d seen it a lot before his team was formed. People would get a moment of courage or clarity, only to be told “not yet.”

“Your first answer has to be ‘yes,’” he said. “‘Yes, I can help you.’”

He knew about a woman who had come from 25 miles out of town, then was told to come back days later. She didn’t have a car or a home to return to.

“They didn’t even offer her a ride,” Blaire said. “Sometimes you only have one shot.”

Blaire has learned that building trust starts with a small offering. A car ride. A sandwich. Help getting a government ID. Anything to show that you care, that you’re useful. That you see someone trying.

Outside the health department, a man in muddied jeans and a frayed T-shirt stood waiting on the curb. He introduced himself as Jetson and didn’t give a last name. Blaire shook his hand before they loaded into the car.

“So what brings you this way?” Blaire asked, once both were buckled in.

“I heard there were services here,” Jetson said, his voice gruff, quivering. “I’ve tried to stop using so many times, but I keep messing it up.”

Jetson shook his head.

“Well, I’m glad you found us,” Blaire said. He asked the man if he wanted to go to the recovery center for a screening. He did.

Over the 10-minute drive to Beacon Point, Blaire and Jetson talked, not about drugs or meds, but life. Baseball. Cabbage (good when fried).

When they pulled up, Blaire handed Jetson a card.

“Please call me,” Blaire said. “If you need anything. We can get you help.”

For a moment, the men sat there. Jetson pulling at his fingers. Taking deep breaths.

Then, he got out of the car — Blaire’s card in hand — and walked through the glass door.

This article was produced in partnership with the Tampa Bay Times.

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Pacientes con narcolepsia enfrentan una doble pesadilla: escasez de medicamentos y estigma

Lauren Peace, Tampa Bay Times — Wed, 03 Jan 2024 21:20:05 +0000

Nina Shand no puede mantenerse despierta.

Desde que era adolescente dormía siestas por la tarde para poder vivir la vida plenamente; “trabajar duro, jugar duro”, pensaba. Pero alrededor de sus 25 años la somnolencia se volvió un problema.

Una simple tarea en la computadora la adormecía, y manejar 20 minutos por San Petersburgo, la ciudad de Florida en donde vive, le provocaba una somnolencia tan intensa que sus párpados temblaban, obligándola a detenerse. Supo que algo estaba realmente mal cuando ya no se sentía segura al volante.

En 2021 recibió un diagnóstico de narcolepsia, un trastorno poco común que provoca somnolencia diurna excesiva.

Su médico le recetó Adderall, la versión de marca del medicamento con anfetaminas que se usa comúnmente para tratar el trastorno por déficit de atención e hiperactividad (TDAH).

Funcionó. Por primera vez en mucho tiempo, Shand, que ahora tiene 28, se sentía llena de energía. Ya no tenía problemas en el trabajo ni dormía siestas a escondidas, ni tomaba café para engañar a su cuerpo y poder mantenerse despierta. Se sentía esperanzada.

Pero en 2022, por culpa de la escasez nacional de Adderall, las farmacias no podían surtir su receta. Shand y muchas otras personas en Estados Unidos perdieron acceso al medicamento y tuvieron que armar un plan de tratamiento nuevo y a veces menos efectivo, mientras los doctores hacían lo posible por satisfacer sus necesidades.

Más de un año después, esta escasez persiste. En octubre, los demócratas de la Cámara de Representantes le a la Administración de Alimentos y Medicamentos (FDA) y a la Administración de Control de Drogas (DEA) que trabajaran con farmacéuticas para garantizar un mejor suministro.

“No podemos permitir que esta sea la realidad de los estadounidenses”, decía la carta, encabezada por la representante , demócrata de Virginia.

Pero por ahora lo es.

Cada mes llega con las mismas ansiedades. Los pacientes navegan una confusa red de logística e incertidumbre para tratar de obtener los medicamentos que necesitan para vivir normalmente.

La cobertura periodística de la escasez, e incluso la carta de los demócratas de la Cámara de Representantes, se ha centrado principalmente en las personas con TDAH. Pero para aquellos con trastornos del sueño, como Shand, las consecuencias pueden ser aún más serias.

Actividades básicas como conducir se vuelven peligrosas o imposibles sin la medicación. El rendimiento laboral y académico se ve amenazado por el sueño repentino y, en algunos casos, por episodios de parálisis. La afección también puede interferir con los pasatiempos y la vida social.

“Adderall me devolvió la vida”, dijo Shand. “La experiencia de dejar un medicamento que estabas tomando es como una montaña rusa de la que quieres bajarte desesperadamente”.

Estos desafíos, dijo, han destacado la soledad de vivir con un trastorno raro e incomprendido.

¿Qué es esta afección?

Se estima que una de cada 2,000 personas en los Estados Unidos vive con narcolepsia (más de 160,000 en todo el país). Forma parte de un grupo más amplio conocido como trastornos de hipersomnia, o afecciones que se caracterizan por la dificultad para mantenerse despierto durante el día.

Hay de narcolepsia.

Ambos afectan la capacidad para mantenerse despierto, pero el tipo 2 suele ser menos grave. Además de trastornos del sueño, la mayoría de las personas con narcolepsia tipo 1 experimentan una pérdida repentina y temporal del control muscular o parálisis, llamada cataplexia.

Las emociones fuertes, como la sensación de sorpresa o un ataque de risa, pueden desencadenar un episodio de cataplexia. Se puede manifestar en distintas formas: para algunas personas con narcolepsia los síntomas incluyen mandíbula caída o manos flácidas, mientras que para otras se trata de una parálisis que afecta a todo el cuerpo.

Las causas de la narcolepsia tipo 1 pueden incluir enfermedades autoinmunes y lesiones cerebrales, pero se cree que el problema subyacente son los niveles bajos de hipocretina, una hormona que afecta la fase REM del sueño (cuando se experimentan los sueños).

“La narcolepsia se debe a un interruptor defectuoso en el cerebro para el sueño REM”, dijo , doctor y director médico del University of Florida Health Sleep Center.

Las personas con narcolepsia entran en la fase REM extremadamente rápido, dijo Syed. Las personas que no tienen trastornos del sueño entran en REM a los 60 o 90 minutos de dormirse. Pero los que sufren de narcolepsia pueden entrar en la fase REM casi de inmediato y tener un sueño completamente desarrollado en solo minutos, explicó Syed.

En algunos casos, los síntomas también pueden incluir parálisis del sueño y alucinaciones.

Aumento de la demanda

Desde que comenzó la escasez de Adderall, , especialista en medicina del sueño en University of South Florida (USF) Health, ha recibido llamadas a su consultorio todas las semanas de pacientes que están teniendo dificultades para obtener su medicamento.

A los estudiantes universitarios les preocupan las bajas calificaciones y los exámenes finales. Los pacientes de 70 años, que han controlado sus síntomas con Adderall durante décadas, ahora se ven obligados a probar otros medicamentos, como Ritalin.

Hussaini y su personal de USF Health han hecho lo posible para ayudar a los pacientes a adaptarse a nuevos planes de tratamiento, pero no se puede negar que la situación ha sido estresante. A algunos pacientes les preocupa que una nueva droga interfiera con su calidad de vida mientras continúe el desabastecimiento.

La escasez de medicamentos en Estados Unidos no es algo nuevo, pero en los últimos años ha alcanzado picos históricos, dijo Michael Ganio, director de práctica farmacéutica y calidad de la , que representa a farmacéuticos en todo el país.

La escasez de Adderall, agregó Ganio, está relacionada con un aumento en la demanda.

La pandemia de covid-19 provocó una oleada de nuevos diagnósticos de TDAH. De acuerdo con algunos estudios, la ausencia de rutina y el aumento del tiempo frente a la pantalla pueden haber sido factores que influyeron. Con esos diagnósticos vino un crecimiento en el uso de fármacos estimulantes, dijo Ganio, en muchos casos recetados mediante telesalud.

Adderall es una sustancia controlada clasificada en la Lista II de la DEA, altamente regulada debido a su potencial de abuso como droga recreativa. Antes de la pandemia, los pacientes debían hacer una cita médica en persona para que les recetaran el medicamento. Pero ese requisito se eliminó durante la emergencia de salud pública y se les permitió a los proveedores recetar mediante telesalud, una medida que ha sido .

“Hay un amplio grupo de pacientes que nunca tuvieron acceso o que de repente tienen un acceso más fácil a proveedores que pueden hacer ese diagnóstico y recetar”, dijo Ganio.

Otra causa de la escasez son las limitaciones de producción impuestas por la DEA. A cada fabricante de medicamentos se le asignan restricciones sobre la cantidad de la droga que puede producir. Pero como estas compañías están protegidas por leyes de secretos empresariales, no siempre está claro si los límites impuestos por la DEA son demasiado bajos o si los fabricantes simplemente no están produciendo a su máxima capacidad.

En agosto, los líderes de la FDA y la DEA enviaron una a los fabricantes pidiéndoles que trabajaran juntos para aumentar la producción y que confirmaran estar cumpliendo con sus requisitos mínimos.

Una pesadilla administrativa

En noviembre, Nadine Dixon, de 50 años, esperaba ansiosamente en el estacionamiento de un Walgreens del condado de Pinellas, en Florida, para que surtieran su receta de Adderall. Era la tercera vez en un día que tenía que esperar en el estacionamiento de una farmacia.

Para Dixon, cuyo neurólogo le receta Adderall durante consultas en persona todos los meses, el año pasado fue una pesadilla administrativa. Los efectos de la escasez, dijo, se agravaron por los obstáculos burocráticos en torno a los medicamentos clasificados en la Lista II.

A diferencia de los fármacos para la presión arterial, por ejemplo, que se pueden dispensar a los pacientes en un suministro de 90 días, la receta de Adderall de Dixon sólo cubre 30 días, y no se permite surtirla automáticamente.

A medida que se acerca el final del mes y su frasco de pastillas se va vaciando, aumenta su ansiedad.

En su cita con el doctor, recoge su receta y comienza de nuevo el tedioso proceso de tratar de surtirla.

Algunos meses Dixon ha tenido que ir hasta a 10 farmacias hasta conseguir su medicamento. A veces llama antes para preguntar si lo tienen, pero rara vez le dan una respuesta.

Cuando encuentra una farmacia que tiene Adderall, se enfrenta a un nuevo desafío. Detalles minúsculos, como un número escrito con cifras en vez de letras, o la firma de un doctor que luce levemente distinta a la del mes anterior, pueden hacer que la farmacia la rechace. En esos casos, su única opción es volver al consultorio del doctor y pedir que ajusten la documentación.

Los proveedores pueden enviar recetas electrónicas a una farmacia para evitar problemas con la escritura a mano, pero éstas traen sus propias complicaciones: solo pueden enviarse a una farmacia a la vez y no se pueden transferir.

Si la farmacia que recibió la receta no tiene el medicamento, el paciente debe volver a pedirle al doctor que mande la receta a otro lugar. Y en muchos casos sólo el doctor (no una enfermera ni un asistente médico o miembro del personal) está autorizado para hacerlo.

, especialista en medicina del sueño en Johns Hopkins All Children’s Hospital, dijo que esto ha sobrecargado a los proveedores, que están haciendo malabares para reescribir recetas, aconsejar a los pacientes, y manejar las citas y el trabajo de investigación.

El resultado suele ser una respuesta atrasada.

“Puede ser realmente angustiante”, dijo Ortiz. “Se les está acabando el tiempo y necesitan este medicamento para funcionar normalmente. Cuando al final lo obtienen, no saben qué les espera el mes que viene. Tienen que pasar por todo esto de nuevo”.

Dixon, a quien le diagnosticaron narcolepsia con cataplexia en 2010, estimó que ha pasado hasta ocho horas al mes tratando de conseguir su medicamento desde que comenzó la escasez. En tres de los últimos seis meses, su receta no se ha surtido a tiempo. Ha tenido retrasos de cuatro o cinco días.

Esto le ha causado fuertes migrañas, cambios de humor, debilidad muscular y, por supuesto, sueño repentino, contó.

“Se siente como si hubieras estado despierto durante cuatro días seguidos y tratando de mantener los ojos abiertos”, dijo Dixon. “En cuanto me siento, me quedo dormida”.

Dixon se describió a sí misma como una persona con energía cuando toma su medicamento. Es madre soltera y cuida a una mujer mayor, y mantiene un trabajo en línea para ganar dinero adicional. También lleva una vida social plena.

Pero sin su medicamento, dijo, su vida se paraliza. No puede ir a tomar unos tragos con amigos. No puede salir a caminar. Simples conversaciones sobre temas estresantes pueden desencadenar ataques de cataplexia que hacen que sus extremidades se entumezcan.

“Es horrible”, dijo Dixon. “Las irregularidades con la medicación son duras para el cuerpo”.

Casi una hora después de llegar a la farmacia ese día de noviembre, mientras esperaba en el estacionamiento, recibió una llamada del farmacéutico pidiéndole que entrara. No pudieron surtir su receta, le dijo, porque hubo un error.

La despidieron con una nota detallando los ajustes necesarios.

Regresó al consultorio de su neurólogo, pero cuando llegó se enteró de que el doctor ya se había ido a su casa.

Tendría que volver a intentarlo al día siguiente.

Estigma y esperanza

Adderall no es el único tratamiento utilizado para la narcolepsia. Existen otros estimulantes, así como medicamentos más nuevos fabricados específicamente para tratar los trastornos del sueño, pero pueden ser caros y los seguros no siempre los cubren.

Y cuando un paciente encuentra un medicamento que funciona, cualquier cambio puede resultar aterrador, afirmó Shand. Desde que recibió su diagnóstico ha probado al menos otros tres tratamientos.

“Adderall ha sido el único estimulante que me mantiene despierta sintiendo que puedo estar todo el día sin tener que dormir”, dijo.

Ha podido renovar su receta desde que comenzó el otoño, dijo, pero ha aprendido a no darlo por hecho. Nunca sabe lo que le espera el mes siguiente y si las farmacias locales tendrán el medicamento disponible.

Para Shand, que padece narcolepsia con cataplexia, los años desde su diagnóstico han sido marcados por sentimientos de frustración y tristeza, pero también de soledad.

En la televisión y las películas, los narcolépticos suelen ser objetos de burla, dijo. Descubrió que la mayoría de las personas no saben realmente qué es la narcolepsia.

“La realidad no es tan graciosa como parece”, dijo Shand. “Es debilitante. Es algo que te cambia la vida”.

Este artículo se produjo en colaboración con Tampa Bay Times.

Ģ��ӰԺ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Ģ��ӰԺ—an independent source of health policy research, polling, and journalism. Learn more about .
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Patients With Narcolepsy Face a Dual Nightmare of Medication Shortages and Stigma

Lauren Peace, Tampa Bay Times — Wed, 03 Jan 2024 10:00:00 +0000

Nina Shand couldn’t stay awake.

She had taken afternoon naps since she was a teenager to accommodate her “work hard, play hard” attitude, but when she was in her mid-20s the sleepiness became more severe.

Menial computer tasks put her to sleep, and a 20-minute drive across her city, St. Petersburg, Florida, brought on a drowsiness so intense that her eyelids would flutter, forcing her to pull over. She knew something was really wrong when she no longer felt safe behind the wheel.

In 2021, she received a diagnosis: narcolepsy, a rare disorder that causes excessive daytime sleepiness.

Her doctor prescribed her Adderall, the brand-name version of the amphetamine-powered medication commonly known for treating attention-deficit/hyperactivity disorder.

It worked. For the first time in years, Shand, now 28, felt energized. She was no longer struggling at work, sneaking naps, or downing coffees to trick her body into staying awake. She felt hope.

But by 2022, a national Adderall shortage meant pharmacies were no longer able to fill her prescription. Shand and countless others across the country were being turned away, left to piece together a new — and often less effective — treatment plan with doctors scrambling to meet their needs.

More than a year later, the shortage continues. In October, Democrats in the U.S. House of Representatives and Drug Enforcement Administration to work with drug manufacturers to ensure better supply.

“We cannot allow this to be the continuing reality for Americans,” read their letter, led by Rep. (D-Va.).

But for now, it is.

Each month is accompanied by familiar anxieties as patients navigate a web of messy logistics and uncertainty while trying to get the medication they need to live normally.

Media coverage of the shortage — and even the House Democrats’ letter — has focused primarily on the harms to people with ADHD. But for those with sleep disorders, like Shand, the effects may be even more consequential.

Basic tasks — like driving — become dangerous or impossible without medication. Job and school performances are threatened by the onset of sudden sleep and sometimes even paralysis. Hobbies and social lives can fall by the wayside, too.

“Adderall gave me my life back,” said Shand. “Going from having a medication to not, it’s like a roller coaster you desperately want to get off.”

The resulting challenges, she said, have made particularly clear the loneliness of living with a rare and misunderstood disorder.

What Is Narcolepsy?

An estimated 1 in 2,000 people in the United States live with narcolepsy — more than 160,000 people nationwide. The disorder is part of a broader group known as hypersomnolence disorders, or conditions characterized by difficulty staying awake during the day.

There are of narcolepsy.

Both types affect one’s ability to stay awake, but Type 2 is typically less severe. In addition to sleep disturbance, most people with Type 1 narcolepsy experience sudden, temporary loss of muscle control or paralysis, called cataplexy.

Cataplexy attacks are typically triggered by emotion — like laughter or surprise. For one person living with narcolepsy, an attack might look like a slack jaw or limp hand. For another, it could trigger full-body paralysis.

Causes of Type 1 narcolepsy can include autoimmune disorders and brain injuries, but the underlying issue is believed to be low levels of hypocretin, a hormone that is thought to affect REM sleep — the dream state.

“Narcolepsy is due to a faulty switch in the brain for REM sleep,” said , a physician and the medical director of the University of Florida Health Sleep Center.

People with narcolepsy go into REM extremely quickly, Syed said. A person without a sleep disorder will enter REM around an hour or 90 minutes after falling asleep. But a person with narcolepsy may go into REM almost immediately and could have a fully fleshed-out dream in just minutes, Syed said.

In some circumstances, symptoms can also include sleep paralysis and hallucinations.

Increased Demand

Every week since the Adderall shortage began, , a sleep medicine specialist at University of South Florida Health, has had calls to her office from patients struggling to access their medication.

College students are worried about plummeting grades and final exams. Patients in their 70s, who have managed symptoms with Adderall for decades, are now forced to switch to other medications, like Ritalin.

Hussaini and her staff at USF Health have worked to help patients adjust treatment plans, but there’s no denying the added stress. Some patients worry what a new plan may mean for their quality of life as shortages continue.

Drug shortages in the U.S. aren’t new, but the past couple of years have brought an all-time high, said Michael Ganio, who directs pharmacy practice and quality for the , which represents pharmacists nationwide.

The Adderall shortage, Ganio said, is linked to increased demand.

The covid-19 pandemic brought on a flood of new ADHD diagnoses. Studies have found absence of routine and increased screen time may have played a role. With those diagnoses came an increase in stimulant prescriptions, Ganio said — often via telehealth.

Adderall is a Schedule II controlled substance. It’s highly regulated because of the potential for being diverted for recreational use. Prior to the pandemic, patients were required to have an in-person doctor appointment to get a prescription. But that requirement was waived during the public health emergency, and telehealth appointments were allowed. The telehealth allowance has since .

“There’s a broad group of patients who never had access, or suddenly have easier access, to providers who can make that diagnosis and prescribe,” Ganio said.

Another reason for the shortage are production limitations put in place by the DEA. Each drug manufacturer is effectively given quotas of how much of the drug they can produce. But because manufacturers are shielded by trade secret protections, it can be hard to know whether the DEA quotas are too low or if the manufacturers just aren’t producing to full capacity.

In in August, the leaders of the FDA and DEA called on manufacturers to work together to increase production and confirm they are working to produce up to their quotas.

A Logistical Nightmare

From the parking lot of a Pinellas County, Florida, Walgreens in November, Nadine Dixon, 50, waited anxiously to have her Adderall prescription filled. It was the third time she’d sat in a pharmacy parking lot that day.

For Dixon, who gets her prescription through monthly in-person visits with a neurologist, the past year has been a logistical nightmare. The effects of the shortage, she said, have been compounded by the layers of red tape around Schedule II drugs.

Unlike, say, blood pressure medication — which can be dispensed to patients in a 90-day supply — Dixon can get enough Adderall only for 30 days, and automatic refills are not allowed.

As the end of each month approaches and her pill bottle empties, her anxiety spikes.

At her doctor appointment, she picks up her prescription, commencing a cumbersome routine.

Some months, she has had to drive to upward of 10 pharmacies to find her medication. Sometimes she calls in advance to ask if they have it, but she rarely gets answers.

When she finds a pharmacy that has Adderall, a new challenge hits. Minuscule details — like a number written with numerals instead of being spelled out, or a doctor’s signature that looks slightly different than it did the month before — can result in the pharmacy turning her away. Her only option then is to drive back to the doctor’s office and ask for the paperwork to be adjusted.

Doctors can send electronic prescriptions to a pharmacy to avoid the issues with handwriting, but those pose their own complications: They can be sent to only one pharmacy at a time, and can’t be transferred.

If the receiving pharmacy is out of medication, patients have to go back to their doctor to ask that they send the prescription elsewhere. And often only the doctor — not a nurse, nor a physician assistant, nor a staff member — is allowed to address that call for help.

a sleep medicine specialist at Johns Hopkins All Children’s Hospital, said that’s put a strain on doctors, who are juggling efforts to rewrite prescriptions, guide patients, and handle appointments and research.

The result is often a delayed response.

“It can be really nerve-wracking,” Ortiz said. “Their time is running out, and they need this medication to function normally. When they finally do get it, they don’t know what the next month will hold. They have to go through it all again.”

Dixon, who was diagnosed with narcolepsy with cataplexy in 2010, estimated she’s spent up to eight hours a month trying to get her medication since the shortages began. In three of the past six months, her prescription hasn’t been filled on time. She’s experienced delays of four or five days.

The results are terrible migraines, mood swings, muscle weakness, and — of course — sudden sleep, she said.

“It feels like you’ve been awake for four days straight and are trying to keep your eyes open,” Dixon said. “The second I sit down, I fall asleep.”

Dixon described herself as an energetic person when she’s on medication. She’s a single mom and a caregiver for an older woman, and she works an online job for extra money. She has a full social life, too.

But without medication, she said, her life comes to a standstill. She can’t go have drinks with friends. She can’t go for walks. Simple conversations about stressful topics can trigger cataplexy attacks, which cause her limbs to go numb.

“It’s really horrible,” Dixon said. “Irregularities with the medication are hard on your body.”

Almost an hour after she arrived at the pharmacy that November day, she got a phone call asking her to come in from where she’d been waiting in the parking lot. They couldn’t fill her prescription, the pharmacist told her. The prescription had an error.

They sent her away with a sticky note spelling out the necessary adjustments.

She drove back to her doctor’s office, but when she got there, she learned the doctor had left for the day.

She would have to try again the next day.

Stigma and Hope

Adderall isn’t the only treatment used for narcolepsy. Other stimulants, as well as newer drugs made specifically for treating sleep disorders, can help, but those can come with hefty price tags and insurance battles.

And when a patient finds a drug that works, any change can be scary, Shand said.

Since her diagnosis, Shand said, she’s tried at least three other treatments.

“Adderall has been the only stimulant that really keeps me awake and feeling like I can go through my entire day without having to sleep,” she said.

She’s been able to get her prescription refilled since fall began, she said, but she’s learned not to get comfortable. She never knows what the next month will hold — what stock local pharmacies will have available.

For Shand, who has narcolepsy with cataplexy, the years since her diagnosis have brought waves of frustration and grief but also a sense of loneliness.

In television and movies, narcoleptics are often the butt of a joke, she said. Most people, she’s found, don’t really know what narcolepsy is.

“It’s not actually all that funny,” Shand said. “It’s genuinely debilitating. It’s life-altering.”

This article was produced in partnership with the Tampa Bay Times.

Ģ��ӰԺ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Ģ��ӰԺ—an independent source of health policy research, polling, and journalism. Learn more about .
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More Cities Address ‘Shade Deserts’ as Extreme Heat Triggers Health Issues

Lauren Peace, Tampa Bay Times and Jack Prator, Tampa Bay Times — Mon, 28 Aug 2023 09:00:00 +0000

TAMPA, Fla. — If it weren’t for the traffic along South MacDill Avenue, Javonne Mansfield swears you could hear the sizzle of a frying pan.

The sun is scorching with such violent intensity that even weathered Floridians can’t help but take note.

In a hard hat, Mansfield pushes a shovel into the earth. Heat radiates from the road, the concrete parking lots. It’s around 10:30 a.m., and his crew is starting a 10-hour shift fixing traffic lights in West Tampa. Cloud coverage is minimal — thin and wispy. There’s no greenery or trees to shield them, no refuge from the blistering sun.

“I can feel it,” Mansfield says, “like I’m cooking.”

A mile south, near Palma Ceia Golf and Country Club in South Tampa, Kiki Mercier walks a poodle mix along a row of stately homes. It’s the same city on the same July day, but here, the heat feels different.

Plush lawns spotted with children’s toys help absorb the sun’s rays. But it’s the dozens of live oak trees with sprawling branches that make the biggest difference to Mercier, who walks dogs for a living.

Here, it feels possible to be outside, protected by natural tunnels of shade.

As the climate warms, a person’s health and quality of life hinge, in part, on the block where they live or work. Green space and shade can be the difference between a child playing outside and being stuck inside on hot summer days, the difference between an elderly person fainting while waiting for a bus and boarding safely, the difference between a construction worker suffering heatstroke on the job and going home to their family.

Neighborhoods with more trees and green space stay cooler, while those coated with layers of asphalt swelter. Lower-income neighborhoods tend to be hottest, a , and they have the least tree canopy.

The same is true in cities across the country, where poor and minority neighborhoods disproportionately suffer the consequences of rising temperatures. Research shows the temperatures in a single city, from Portland, Oregon, to Baltimore, can vary . For a resident in a leafy suburb, a steamy summer day may feel uncomfortable. But for their friend a few neighborhoods over, it’s more than uncomfortable — it’s dangerous.

ever. As Americans brace for an increasing number of hot days and extreme weather events linked to climate change, medical professionals stress that rising heat will make health inequities worse.

“Heat affects quality of life,” said Cheryl Holder, co-founder and interim director of , a coalition of medical professionals that advocates for solutions to climate change. “It’s poor and vulnerable patients who are suffering.”

Now, cities like Tampa are trying to build heat resiliency into their infrastructure — including by boosting their tree canopy — all while experts warn of a public health threat growing more severe each year.

Unrelenting Heat

As a human body warms, sweat gathers and evaporates from the skin, transferring heat away and into the air.

But in Florida, humidity hangs like a blanket, making it harder for the body’s cooling system to work.

“The sweat just doesn’t evaporate, so you don’t lose heat as effectively,” said Patrick Mularoni, a sports medicine physician at Johns Hopkins All Children’s Hospital in St. Petersburg.

In these unrelenting summer months, doctors like Mularoni have seen up close the toll heat can take.

Muscle cramps and headaches. Fatigue. Heatstroke — which can be fatal.

Daily temperatures are one benchmark of heat’s impact, but factors like humidity, wind speed, and sun angle also affect the toll on the body.

The heat index, often called the “feels like” temperature, accounts for temperature plus the added burden of humidity. For instance, while the thermometer may read 91 degrees, the heat index means it can feel like 110 degrees. The National Weather Service defines or higher as dangerous.

Between 1971 and 2000, Tampa saw about four days a year with a heat index greater than 105 degrees.

By 2036, that number is projected to jump to as many as 80 days a year.

Without extreme steps to reduce global temperatures, , Tampa residents will experience 127 “dangerous” days annually by 2099 — more than a third of the calendar year.

When the body temperature goes up to 104 as a result of overheating, the body begins dysregulating and shutting down. Decreased blood flow to the organs can cause multisystem organ failure.

Without prompt intervention to lower the body temperature, according to the Centers for Disease Control and Prevention, heatstroke can be fatal.

This summer, heat waves have in Texas and one in Louisiana, where the heat index reached 115 degrees. In Arizona, have died, and 69 other deaths were being investigated for potential links to heat illness. Other Arizonans have been hospitalized for after touching scalding concrete.

As far north as Maryland, a died in July — the state’s first recorded heat-related death of the year.

And in Parkland, Florida, a died of heat exposure in January after he’d spent hours pulling weeds and propping up bell pepper plants. Investigators said his death was preventable. He’d recently moved from Mexico; it was his first day on the job.

In Tampa, a Shrinking Canopy

Last year was to date.

The city’s average annual temperature has risen by 2.5 degrees since record-keeping began in 1891, according to the city’s .

All the while, a natural tool for reducing heat has been slowly disappearing. According to a 2021 study, tree canopy coverage in Tampa is at its lowest in 26 years.

Experts say vanishing tree cover coupled with hotter summers is a lethal combination.

The uneven distribution of trees — and therefore shade — means lower-income and Hispanic neighborhoods are more affected by heat, Tampa’s city report found.

MacFarlane Park, east of Tampa International Airport, ranks among the least shady areas of the city, according to the report. It has 21% canopy coverage, or nearly a third less than the city average.

Only 15% of East Ybor City and 18% of North Hyde Park benefit from tree cover. All these neighborhoods have gradually lost trees over the past few decades.

Many factors influence the shrinking canopy, the city’s analysis found, including the loss of old and dying trees and the removal of trees for construction. In some lower-income neighborhoods, residents have chosen to cut trees down because they can’t afford the upkeep, or because dangling branches pose a threat.

Some wealthier areas are seeing faster and more recent canopy loss as old trees die or are cut down, but their total tree cover is still double that of poorer neighborhoods.

On the upper end, the canopy of mansion-lined Bayshore Boulevard is not far behind those of a series of housing developments along Flatwoods Park in New Tampa, one of which hovers around 73% coverage.

Gray Gables, a neighborhood bordering West Kennedy Boulevard, lost the highest proportion of trees from 2016 to 2021, but canopy still covers 38% of its total area.

It’s not just shade the city is losing. Trees release water vapor, which helps cool people off. Each year, according to the , Tampa’s trees remove 1,000 tons of air pollutants, capture the potential carbon dioxide emissions of 847 tanker trucks’ worth of gasoline, and reduce stormwater runoff equal to 850 Olympic swimming pools.

Natural shade also determines the paths people walk — or whether they walk at all — and how often their kids can play in the yard.

On a July day in West Tampa, a girl on a bike squints as she pedals, beads of sweat dripping from her brow. A woman pushing a stroller contorts her body while waiting for the bus, trying to make use of a strip of shade no wider than 6 inches, cast from a traffic pole.

Angela Morris stands in her sun-drenched driveway and rinses sandy beach toys with a hose. She’s layered in sunscreen, but in the blazing heat, her skin is already burning.

“It’s almost unbearable,” Morris says. Her kids — ages 2 and 5 — are inside.

Do they ever play outside in the summer?

“Never,” Morris says. “It’s a lot of younger families with kids who would benefit from some shade and a sidewalk.”

Data Deficiency Poses Problems

Heat-related deaths also prove difficult to track.

A doctor might code a fatal heart attack on an extremely hot day as a cardiovascular event without noting, for example, that heat likely exacerbated the condition.

“What often gets lost are the circumstances surrounding deaths and illness,” said Christopher Uejio, a Florida State University researcher who studies the effects of climate on health and has led data projects for cities around the country.

Extreme heat in the U.S. kills more people than hurricanes, floods, and tornadoes put together, according to the . It’s the country’s No. 1 weather-related cause of death.

About 67,500 emergency room visits and just over 9,000 hospitalizations across the U.S. each year are tied to heat, according to the CDC.

But those numbers account only for instances in which doctors specifically code the visit as a heat-related event.

Similarly, between 2004 and 2018, of only 702 across the country were reported to the CDC.

“We know that’s a pretty gross underestimate,” said Uejio. “Our best scientific estimates are anywhere between 5,000 to 12,000 deaths in the United States due to conditions exacerbated by heat each year.”

Low reporting continues today, experts say.

Despite patchy reporting, it appears heat-related deaths are on the rise. Last year’s number of estimated deaths was more than double the number from a decade ago.

Medical schools must teach doctors to look for and document heat-related illness, said Holder, of Florida Clinicians for Climate Action. Her group has held lectures for students and doctors on topics like the effects of climate change on patients.

Holder said she has seen how heat exposure over time harms the predominantly low-income and minority patients she served in her community clinic in South Florida.

There was the elderly man who had signs of worsening kidney function on days when he worked long shifts selling fruit on hot Miami streets.

The mother whose asthma worsened as temperatures rose.

The Fort Lauderdale woman with chronic lung disease who was arrested for fighting with her daughter over a fan. She died three days after returning to her broiling apartment.

A More Resilient City

That the tree canopy is shrinking is . In April, Tampa Mayor Jane Castor set a goal of planting 30,000 trees by 2030.

Whit Remer, Tampa’s sustainability and resilience officer, said the target might be difficult to nail.

Remer said trees are competing for space in the right of way with sidewalks and utilities. Limited open land also poses a challenge. Tampa has no room for new parks, he said. Now, it’s about maximizing that finite green space.

“Planting trees has been the hardest thing that I have done as the city’s resilience officer,” Remer said.

Remer said he’s looking to other cities for solutions. In Phoenix, a uses a water-based asphalt layer to reflect heat off roads. Last year, Miami-Dade County appointed the world’s first chief heat officer. Washington and Oregon have begun distributing thousands of air conditioning units to vulnerable residents and barred utility companies from cutting power to homes during heat waves.

Remer said Tampa is still in its “learning and listening” phase. Last year, the city was by the National Academies of Sciences, Engineering, and Medicine to develop a guide for understanding and fighting the effects of heat in East Tampa, a predominantly Black neighborhood, where at least a third of children live below the poverty line.

The project director is Taryn Sabia, an urban designer and associate dean at the University of South Florida who focuses on climate resiliency work, which spans hurricane preparedness, flooding, and, increasingly, extreme heat.

Planting trees is helpful, Sabia said, but they take time to grow and effort to maintain. Quicker actions could include erecting better shade structures at bus stops or implementing rules for construction to encourage the use of materials that generate less heat in the sun. For example, some cities in the Northeast — including Philadelphia and New York — provide financial incentives for “,” in which the top of a building is covered with plants.

Another easy step: painting everything white. Light colors while dark colors absorb heat.

And while Florida codes require homes to have a mechanism to provide heat in the winter, there are no codes requiring landlords to provide air conditioning.

“You can no longer be here and not have it,” Sabia said.

Tampa could better tailor weather advisories for specific needs and neighborhoods, she said. Heat becomes more dangerous more quickly on upper floors of older apartments, for example, because heat rises. Expanding access to cooling shelters is also key.

It’s the hottest week of the year so far in Tampa, and 75-year-old Benjamin Brown is walking home from the eye doctor, about a 30-minute walk.

There are few trees in sight, but Brown, who is without a car, makes a similar trek every day, running errands, visiting friends.

“It’s very oppressive. It does get to me,” Brown says as he nods, wipes his forehead, and continues down the street in the blistering Tampa sun.

Shade — any shade — would be a lifesaver, he said.

This article was produced in partnership with the Tampa Bay Times.

Ģ��ӰԺ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Ģ��ӰԺ—an independent source of health policy research, polling, and journalism. Learn more about .
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Millions Are Stuck in Dental Deserts, With No Access to Oral Health Care

Lauren Peace, Tampa Bay Times — Mon, 01 May 2023 09:00:00 +0000

Every day, Adrienne Grimmett and her colleagues at Evara Health in the Tampa Bay area see stories of inequity in their patients’ teeth, gums, and palates.

Marked in painful abscesses, dangerous infections, and missing molars are tales of unequal access to care.

All of these ailments — which keep patients out of work because of pain or social stigma, and children out of school because they can’t concentrate with rotting roots — are preventable.

Annual dental checks are essential to overall health. But of the 67 counties in Florida, experts say, only one has enough dentists to treat all patients. Nine counties in Florida have fewer than three practicing dentists apiece. Lafayette County, in north Florida, doesn’t have a single one.

“It’s a social injustice,” said Grimmett, director of dental services at the not-for-profit, which serves Medicaid and uninsured patients in the Tampa Bay region.

“You will never be totally well if you don’t have oral health,” she said.

In Florida and across the nation, vulnerable and marginalized communities — already prone to higher rates of chronic disease and limited access to health care — are left behind in these dental deserts. There, patient volume exceeds the capacity of providers, or too few dentists are willing to serve those on Medicaid or the uninsured.

Constricting the pool of dentists are low — or nonexistent — reimbursement rates for services paid through the state’s Medicaid programs. Meanwhile, costly dental education can make dentists reluctant to work in more rural areas.

About 6 million Floridians , according to data from the U.S. Department of Health and Human Services. That’s the largest state population living without basic dental care in the U.S.

The consequences can be catastrophic, as people try to navigate a health system with few providers willing to serve them and costs that make services unattainable.

They’re people like Mark Maggs, a 54-year-old Pinellas Park resident diagnosed with cancer last year. He delayed treatment because doctors said he needed to have teeth pulled first. His daughter started a GoFundMe to raise the $3,000 for the extractions.

They’re people like Lisa Lambros, a 40-year-old New Port Richey resident who drives 90 minutes to Tampa for appointments at the county health department. She lost her teeth due to cancer three years ago and desperately needs dentures, but hasn’t been able to afford them. She feels bad for her kids, embarrassed when they bring friends home to meet her.

“I had perfect teeth until I got sick,” Lambros said. “Now people treat me different. They look at me like I’m a bad person.”

Lambros and Maggs both live with daily pain that could be relieved with dental care.

Health equity advocates are fighting for long-term investments in oral health at the local, state, and federal levels to close gaps in care.

Where Are All the Dentists?

Poor dental access is not the result of too few dental school graduates.

Enrollment has been ticking up nationally, with more than 26,000 students in school last year. That’s about a tenth the number of working dentists in the U.S., according to the American Dental Association.

But the majority of those graduates aren’t practicing in underserved communities and don’t accept uninsured patients or those enrolled in federal health insurance plans.

The issue is uneven distribution, said Joe Anne Hart, who’s worked for the for nearly two decades.

Recruiting dentists to rural communities, where public infrastructure is typically worse, can be a challenge, Hart said.

And often, she added, there’s a financial reason why dentists choose to practice in more affluent regions: student loan debt.

As of 2020, new graduates left dental school with an , according to the American Dental Education Association.

With fewer patients in mostly poorer rural communities, graduates flock to private practices elsewhere, seeking financial stability. But it’s not just rural residents who struggle to access care. Because Medicaid reimbursements for dental care are paltry, even in urban areas, most dentists opt not to serve Medicaid patients.

Nearly 8 in 10 Florida dentists reported they did not accept Medicaid patients, according to the most recent from the state Department of Health. More than 70% of respondents cited low Medicaid reimbursement rates as the main reason why.

In Florida, fewer than 5% of dentists work in publicly funded dental offices and community clinics. The survey found the majority work in private practices.

“When you look at our dental Medicaid funding, we haven’t had an increase since 2012,” said Christopher Bulnes, who practices in Hillsborough County. “We’re at the bottom of the nation.”

In 2020, the Medicaid reimbursement rate for child dental services in Florida was of what private insurance reimbursed on average, according to the American Dental Association. That’s one of the lowest reimbursement rates in the country. In Texas, for example, the rate is 70.3%. Arizona’s reimbursement rate is nearly double that of Florida’s.

For standard adult services, such as preventive cleanings and imaging, there is no benefit in the Sunshine State.

Kimme Heller is a 38-year-old St. Petersburg mom who lost her teeth after pregnancy as she battled infection after infection, a product of unlucky genetics and lack of access to preventive care. Her jawbone is so deteriorated from decay that her face is starting to change shape. It hurts to eat. She’s been looking for a dental surgeon, but availability is limited. Even if she could get in, she couldn’t afford the procedures.

“The rich get their smiles. The poor get disease,” she said.

Representatives of the Florida Dental Association said the state — which controls how much dental coverage is offered under Medicaid — should promote oral health care and increase coverage for vulnerable patients.

Additionally, the organization is lobbying for programs that would encourage dentists to care for underserved communities. One initiative they’ve floated would offer dentists up to $50,000 a year in student loan relief for efforts such as serving Medicaid patients or working in areas without enough providers.

As lawmakers convene in Tallahassee, the association has asked the state to set aside $1.8 million per year to support the Dental Student Loan Repayment Program. But with days to go, lawmakers have yet to act.

A Costly Toll

The percentage of adults and kids who have visited a dentist in the past year is lower in Florida than in any other state.

“We’re talking about quality-of-life issues,” said Grimmett, of Evara Health. “Every day we see patients who weren’t able to move forward with cancer treatment because they needed and they weren’t able to get it. We’ve seen patients who have been in pain for long periods of time who can’t sleep or eat and need treatment. We see people without teeth who need dentures.”

Each year, more than $45 billion is lost from the U.S. economy — tallied in work missed and job opportunities lost — because of untreated oral disease, according to the U.S. Centers for Disease and Control and Prevention. Nearly 1 in 5 adults reported that oral disease affected their appearance and hampered their ability to get work. Some struggle to eat through the pain.

Children, meanwhile, miss class.

“I can’t tell you how many times I’ve received calls from a parent or school nurse because a child cannot focus or learn because they are in pain,” said , who serves Medicaid patients near Pensacola.

In 2020, of people ages 1 through 20 on Medicaid received preventive dental care, such as an annual screening. In Florida, about 67% of kids on Medicaid went without.

Black and Hispanic children are to have untreated oral illness.

For people 65 or older who use Medicare, dental care can also remain out of reach. Medicare does not cover standard services such as cleanings and fillings.

is a founding member of Floridians for Dental Access and former dean of the University of Florida College of Dentistry. His organization is a partnership between nonprofits, individual dentists, and medical centers working to improve health access in the state.

He’s motivated to close disparities — and not just those directly related to health. Oral pain can affect children’s educational outcomes too.

“The literature now documents very clearly that if you are in pain, you’re going to miss school more often than other kids, you’re not going to learn as well,” Catalanotto said. “You’re going to have social issues, because if you’ve got broken-down front teeth, kids are going to make fun of you.”

Catalanotto said there’s also a financial toll. When people don’t have access to local providers and are in pain, they often go to the emergency room.

In 2020, Florida hospitals billed roughly $330 million for more than 100,000 emergency room visits that stemmed from preventable oral health problems, according to analysis of hospital data by CareQuest Institute for Oral Health, a national nonprofit that focuses on health equity.

Much of that burden falls on taxpayers.

And while health care access is limited across medicine — not just in dentistry — Catalanotto stressed that teeth don’t fix themselves.

Some minor ailments, such as colds and viral infections, can simply run their course. A minor dental ailment, he said, does no such thing.

Oral disease is progressive and ongoing and ultimately leads to severe infections.

Until more people have access to preventive care, the most vulnerable are going to continue to get unnecessarily sick.

“We have a crisis in Florida,” Catalanotto said. “That is abundantly clear.”

This article was produced in partnership with the .

Ģ��ӰԺ Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at Ģ��ӰԺ—an independent source of health policy research, polling, and journalism. Learn more about .
USE OUR CONTENT
This story can be republished for free (details).