Elana Gordon, WHYY, Author at ºÚÁϳԹÏÍø News Mon, 23 Jul 2018 18:44:00 +0000 en-US hourly 1 https://wordpress.org/?v=6.8.5 /wp-content/uploads/sites/2/2023/04/kffhealthnews-icon.png?w=32 Elana Gordon, WHYY, Author at ºÚÁϳԹÏÍø News 32 32 161476233 For Aspiring Doctors With Disabilities, Many Medical Schools Come Up Short /news/for-aspiring-doctors-with-disabilities-many-medical-schools-come-up-short/ Thu, 15 Mar 2018 09:00:59 +0000 https://khn.org/?p=821920 Being a medical student or resident is hard enough, but what if you have a disability that adds to the challenge?

One medical resident with a physical disability was about a year and a half into training when the health care institution finally installed an automatic door he needed. Another student faced frustrations when arranging accommodations for taking tests, with it seeming like the medical school was “making up rules along the way.” When another resident first sought support, the disability representative for the school was allegedly unfamiliar with the Americans With Disabilities Act.

These firsthand experiences are documented in aÌýÌýissued Tuesday by theÌýand the University of California-San Francisco about the accessibility and inclusion of students and doctors with disabilities in the medical field. The culture and the environment surrounding disabilities varies widely, it found, with some places doing far better than others.

About 1,500 medical students in the U.S. have disclosed a disability and receive formal accommodations. That’s about 2.7 percent of students, according to the report, and represents a lower percentage than undergraduate programs, in which about 11 percent of students, on average, disclose a disability. The report found that in medicine especially, many students hide their disability out of a “fear of judgment, bias, and skewed perception of ability.”

Medicine is an incredibly tough and competitive field where, historically, doctors have been viewed as superhumans, operating at the highest physical and mental capacity at all hours of the day and night, performing miracles and saving lives. There’s an expectation of perfection. But doctors are human, too.

A lack of understanding about disabilities can create big challenges for otherwise qualified and talented future doctors, saidÌý, co-author of the report and a disabilities expert at the University of Michigan Medical School. Yet some schools may not even be aware of what they could be doing to foster a more inclusive environment.

“I don’t know of a school that doesn’t want to do the best practice,” said Meeks, who is also co-founder of the Coalition for Disability Access in Health Science and Medical Education, adding that schools

might just not have the tools.

For Dr. Geoffrey Young, AAMC’s senior director for student affairs and programs, the nearly 100-page report is a much-needed blueprint for medical institutions to better serve students with disabilities, whether those disabilities be the easily identifiable physical kind or invisible ones.

“I think we have to do a better job of educating those in the field about what the potential is for those with disabilities, versus what is consumed or assumed to be an automatic inability,” Young said, adding that the culture is shifting in medicine. “We are having this conversation in a very open way.”

The report identifies very clear barriers and considerations schools can take in response. That includes everything from the way disabilities are discussed in the admissions process to having a person within the institution who is well-versed in both disability access issues and medical school requirements, to help future doctors better navigate their training.

For Dr. Lina Mehta, associate dean for admissions at Case Western Reserve University School of Medicine in Cleveland, improvements start with changing attitudes and approaches at the onset. Case was cited in the report as a positive example for the disabilities language it has adopted in its materials.

“In admissions, we sort of dictate the face and function of what medicine is going to look like by virtue of who we bring in,” Mehta said. Having a more diverse future physician population, one that includes people with disabilities, improves the field’s ability to understand and care for patients, she said. “It’s critical we bring in a group of learners and future practitioners who will mirror patient populations that they’re taking care of.”

This story is part of a partnership that includes WHYY’s , and Kaiser Health News.

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What’s Next For ‘Safe Injection’ Sites In Philadelphia? /news/whats-next-for-safe-injection-sites-in-philadelphia/ Fri, 26 Jan 2018 10:00:22 +0000 https://khn.org/?p=808361 Philadelphia is a step closer to opening what could be the nation’s first supervised site for safe drug injection. But turning the idea into reality won’t be easy.

City officials gave the proposition the green light Tuesday. They were armed withÌý, harrowingÌýÌýand the backing of key leaders, including the mayor and a newly elected district attorney.

“There are many people who are hesitant to go into treatment, despite their addiction, and we don’t want them to die,” said Dr. Thomas Farley, Philadelphia’s health commissioner and co-chair of the city’s opioid task force. Supervised safe-injection sites, he said, save lives by preventing overdose deaths and connecting people with treatment.

While one big hurdle is now cleared, the details of how safe-injection sites would actually work in Philadelphia have yet to be figured out. Who will actually fund and operate a site? Where will it be located? Will users really be safe there?

“We have a long way to go,” saidÌý, first deputy managing director for the city.

Neither city council approval nor special zoning ordinances would be required to proceed, Abernathy said, but the city doesn’t plan to operate or pay for any sites. Instead, Philadelphia officials would play the roles of facilitator and connector with providers of addiction services.

In that way, Tuesday’s announcement by the city was more like an open call to potential investors and operators than it was the rollout of a specific plan.

“We took a really, really big first step,” said Jose Benitez, executive director ofÌý, a large, nonprofit needle exchange. “It’s early to talk about our involvement at this particular point. As the city officials said, there’s a lot to consider.”

Broadly, the city envisions a place where people would be allowed to bring in drugs and inject them using clean equipment. If someone overdosed, trained staff would respond to prevent death. The sites could save lives and money otherwise lost to hospitalizations and emergency response efforts. Advocates say the sites also could reduce neighborhood problems associated with addiction, like people injecting in public and discarding needles.

A safe, supervised site wouldn’t just be about a spot to inject, Farley stressed, but also somewhere people could connect with other services and treatment.

Still, the effort to open a site will likely face additional hurdles and unknowns, from community buy-in to legal concerns.

For one, Councilwoman Maria Quiñones-Sánchez, whoÌýÌýin her district (one at the heart of the crisis), is wary of the city’s plan.

“This notion of letting a private developer or a private person come tell us how this could be done, we’re not paying for it, we’ll do wrap-around services, so much of that is just up in the air,” Quiñones-Sánchez said. “So why make an announcement with no answers?”

Another question: Could such a site be immune from federal prosecution? Realistically no, said Philadelphia official Abernathy, thoughÌý.

The city’s police commissioner, Richard Ross, has gone from “adamantly against” any injection site to having an open mind. Whether police will take a hands-off approach remains to be seen. So would what the department’s role would be, what police officers would be asked to do, and how that would affect the policing of narcotics?

“I don’t have a lot of answers,” he said.

One point of clarity: Philadelphia District Attorney Larry Krasner has no plans to prosecute.

“What will we do? We will allow God’s work to go on,” Krasner said, citing state laws as justification that allow the committing of minor violations in the interest of preventing greater harms. “We will make sure that idealistic medical students don’t get busted for saving lives and that other people who are trying to stop the spread of disease don’t get busted.”

After all this, it should come as no surprise that the timeline is really unclear, too. Rollout will take months, at least, leaders have said. Though if it were up to Krasner, one would have opened years ago.

“My biggest concern moving forward with harm reduction is that government takes forever,” he said. “When we have three or four people dying every day, nobody can afford to wait.”

This story is part of a partnership that includes , and Kaiser Health News.

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It’s In The Mail: Aetna Agrees To $17M Payout In HIV Privacy Breach /news/its-in-the-mail-aetna-agrees-to-17m-payout-in-hiv-privacy-breach/ Thu, 18 Jan 2018 22:07:52 +0000 https://khn.org/?p=806297 ´¡±ð³Ù²Ô²¹ÌýÌýa lawsuit for $17 million Wednesday over a data breach that happened in the summer of 2017. The privacy of as many as 12,000 people insured by Aetna was compromised in a very low-tech way: The fact that they had been taking HIV drugs was revealed through the clear window of the envelope.

“I was shocked,” said Sam, who distinctly recalls the day he received the notice in August. (Kaiser Health News and NPR agreed not to use his full name because he worries about how going public with his HIV status might affect his work.) The letter came to his mailbox in an apartment complex in New Jersey. He wasn’t directly involved in the lawsuit but says the letter hit a level of vulnerability he had never felt before.

“I haven’t disclosed my HIV status to my parents,” said Sam, 36, who is a civil rights attorney. “Let’s say that letter had gotten forwarded to their house and someone happened to open the mail. Those were the types of things going through my mind.”

In a statement, Aetna wrote:Ìý“Through our outreach efforts, immediate relief program and this settlement we have worked to address the potential impact to members following this unfortunate incident.”

The insurer also said it is “implementing measures designed to ensure something like this does not happen again as part of our commitment to best practices in protecting sensitive health information.”

In an ironic twist, the letters were sent in response to a settlement over previous privacy violation concerns. Aetna had required members to obtain HIV medications through mail-order pharmacies. The affected people had taken medication to treat HIV or to lower the risk of becoming infected with the virus, an approach calledÌý, or pre-exposure prophylaxis.

Lawsuits filed in 2014 and 2015 alleged that policy was discriminatory, that it prevented patients taking HIV medicine from receiving in-person counseling from a pharmacist and that it jeopardized members’ privacy.

Aetna settled with the individual plaintiffs, changed its policy to allow members to fill HIV prescriptions in person at retail pharmacies, and, in turn, sent out notification letters to anyone who had filled prescriptions for HIV medications.

It was those notification letters that contained a large envelope window that exposed sensitive HIV information.

While the stigma surrounding HIV may be less severe than it used to be and treatments have improved greatly, Ronda Goldfein, director of the AIDS Law Project of Pennsylvania, said the reality is that serious discrimination still exists. That means protecting patient confidentiality is critical to ensuring people feel safe getting care.

As hundreds of calls from people who received the Aetna letter started coming into Goldfein’s office and others around the country, she learned of more harrowing and devastating experiences. She said she heard from one man who had homophobic slurs painted on his door when neighbors saw the letter. Other letter recipients felt the need to move out of their neighborhoods. For one woman, whose status became known in her tight-knit immigrant community, “she stopped being able to function, she stopped being able to go to work, and she lost her job,” Goldfein said.

The AIDS Law Project of Pennsylvania and the Legal Action Center initially issued a demand letter in late August that the insurer stop the mailings. The company responded, setting up a relief fund for affected people and apologizing. “This type of mistake is unacceptable, and we are undertaking a full review of our processes to ensure something like this never happens again,” the health insurer said.

Goldfein and othersÌýÌýthan first thought: Up to 12,000 people had received it. Her agency, the Legal Action Center and Berger & Montague PC filedÌý.

The privacy breach as outlined in the proposed settlement was twofold: Aetna released the names of 13,480 people to its legal counsel and a vendor without proper authorization. Of those, 11,875 got the letter that revealed they were taking HIV medication.

The proposed settlement is awaiting approval in federal court, but in it Aetna has agreed to pay $17 million and set up new “best practices” to prevent something like this from happening again.

As part of the payout, the law firms are setting aside at least $12 million for payments of at least $500 to the estimated 11,875 people who may have received a letter exposing that information, acknowledging that “the harm was in the status being disclosed,” Goldfein said. Plus, people won’t have to file additional paperwork and go through more mailings pertaining to their HIV medications.

A fund will be set up for those who experienced additional financial or emotional distress. Individuals will be able to claim up to $20,000. The rest of the money will go toward legal fees and costs.

“It’s a much bigger settlement than ordinary identity theft scenarios, where an online database has been breached and the main injury people are claiming is that they might be victims of identity theft and maybe have their financial information compromised,” said , a specialist in privacy law and data breaches at the University of Minnesota.

The amount may be unusual, but McGeveran also said low-level breaches like this aren’t. Companies may be so focused on IT security that they overlook other ways that privacy can be breached.

“They’re more common than people realize,” McGeveran said. “There’s so much attention to cybersecurity, and rightly so, but a lot of medical privacy concerns are much more analog than that. They’re about things being overheard, they’re about paper records and in this case it’s about a paper mailing.”

Beyond the payout itself, she hopes the suit helps change the culture of companies when it comes to the attention paid to medical privacy, and the rights of people with HIV in particular. To highlight that, lawyers used “Andrew Beckett” as the pseudonym for the original plaintiff in the case, a Pennsylvania man from Bucks County.

It’s a nod to the Tom Hanks character in the 1993 film “Philadelphia,”Ìýwho was fired after his law firm found out he had HIV. This “Beckett” is taking PrEP.

“HIV still has a negative stigma associated with it, and I am pleased that this encouraging agreement with Aetna shows that HIV-related information warrants special care,” the man known as Beckett said in statement.

This story is part of a partnership that includes , and Kaiser Health News.

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Aetna acuerda pagar $17 millones por revelar estatus de miembros VIH positivos /news/aetna-acuerda-pagar-17-millones-por-revelar-estatus-de-miembros-vih-positivos/ Thu, 18 Jan 2018 15:08:29 +0000 https://khn.org/?p=808334 Aetna resolvió una demanda por $17 millones por violar la privacidad de unos 12,000 pacientes, en el verano de 2017. La aseguradora de salud envió cartas por correo en las que se revelaba que habían estado tomando drogas para el VIH en una parte visible del sobre.

“Me sorprendió”, dijo Sam, quien recuerda claramente el día en que recibió el aviso en agosto. (Kaiser Health News y NPR acordaron no usar su nombre completo porque no quiere hacer público su estatus de VIH). La carta llegó a su buzón en un complejo de apartamentos en Nueva Jersey. Sam no participó directamente en la demanda, pero dijo que la carta le hizo sentir un nivel de vulnerabilidad que nunca había experimentado antes.

“No le he dicho mi estatus de VIH a mis padres”, dijo Sam, de 36 años, quien es abogado de derechos civiles. “Imaginemos que enviaban la carta a la casa de mis padres y ellos hubieran visto el sobre… esas fueron las cosas que pasaron por mi mente”.

En un comunicado, Aetna escribió: “A través de nuestros esfuerzos de divulgación, del programa de ayuda inmediata y de este acuerdo, hemos trabajado para abordar el impacto potencial para los miembros después de este desafortunado incidente”.

La aseguradora también dijo que “como parte de nuestro compromiso, se implementarán medidas para que algo así no vuelva a suceder, con las mejores prácticas para proteger la información médica delicada”.

En un giro irónico, las cartas fueron enviadas en respuesta a un acuerdo sobre preocupaciones anteriores sobre violación de la privacidad. Aetna había exigido a los miembros que obtuvieran medicamentos para el VIH a través de farmacias que envían pedidos por correo. Las personas afectadas habían tomado medicamentos para tratar el VIH o para reducir el riesgo de infectarse con el virus, una estrategia llamada .

Las demandas presentadas en 2014 y 2015 alegaron que esta norma era discriminatoria, porque impedía que los pacientes que tomaban medicamentos contra el VIH recibieran asesoramiento en persona de un farmacéutico, y también ponía en peligro la privacidad de los miembros.

Aetna llegó a un acuerdo con los demandantes individuales, cambió su política para permitir que los miembros obtuvieran sus medicamentos para el VIH en persona en las farmacias minoristas y, a su vez, envió cartas de notificación a todas las personas que tenían recetas para medicamentos contra el VIH.

Y fueron esas notificaciones las que contenían una gran ventana en el sobre en donde se expuso información sensible sobre el VIH.

Si bien el estigma que rodea al VIH puede ser menos grave de lo que solía ser, y los tratamientos han mejorado mucho, Ronda Goldfein, directora del AIDS Law Project de Pennsylvania, dijo que la realidad es que todavía existe una gran discriminación. Eso significa que proteger la confidencialidad del paciente es fundamental para garantizar que las personas se sientan seguras al recibir atención.

A medida que cientos de llamadas de personas que recibieron la carta de Aetna comenzaron a llegar a la oficina de Goldfein, y a otras en todo el país, la abogada se enteró de experiencias más desgarradoras y devastadoras. Contó que escuchó a un hombre que tenía insultos homofóbicos pintados en su puerta cuando los vecinos vieron la carta. Otros destinatarios de las cartas sintieron la necesidad de mudarse de sus barrios. Una mujer, cuyo estado se conoció en su comunidad inmigrante muy unida, “ya no pudo funcionar, dejó de ir a trabajar y perdió su empleo”, dijo Goldfein.

Al principio, el AIDS Law Project de Pennsylvania y el Legal Action Center enviaron una carta a Aetna exigiendo que suspendiera los envíos por correo. La compañía respondió disculpándose y estableciendo un fondo de ayuda para las personas afectadas. “Este tipo de error es inaceptable, y estamos realizando una revisión completa de nuestros procesos para garantizar que nunca vuelva a ocurrir algo así”, dijo la aseguradora de salud.

Pronto, Goldfein y otros abogados descubrieron que : hasta 12,000 personas las habían recibido. Su agencia, el Legal Action Center y Berger & Montague PC presentaron .

La violación a la privacidad descrita en el acuerdo propuesto fue doble: Aetna dio a conocer los nombres de 13,480 personas a su asesor legal y a un proveedor sin la debida autorización. De ellos, 11,875 recibieron la carta que reveló que estaban tomando medicamentos contra el VIH.

El acuerdo propuesto está pendiente de aprobación en el tribunal federal, pero en él, Aetna acordó pagar $17 millones y establecer nuevas y “mejores prácticas” para evitar que algo como esto vuelva a suceder.

Como parte del pago, las firmas de abogados están reservando unos $12 millones para pagos de al menos $500 a las aproximadamente 11,875 personas que pueden haber recibido una carta exponiendo esa información, reconociendo que “el daño fue en el estatus revelado”, explicó Goldfein. Además, las personas no tendrán que presentar documentación adicional y recibir más correos relacionados con sus medicamentos para el VIH.

También se establecerá un fondo para aquellos que experimentaron angustia emocional o financiera adicional. Las personas podrán reclamar hasta $20,000. El resto del dinero se destinará a honorarios y costos legales.

“Es un acuerdo mucho más grande que los escenarios ordinarios de robo de identidad, donde se ha violado una base de datos en internet y las personas más afectadas afirman que podrían ser víctimas de robo de identidad y tal vez poner en peligro su información financiera”, dijo , especialista en leyes de privacidad y violaciones de datos en la Universidad de Minnesota.

La cantidad puede ser inusual, pero McGeveran también dijo que irregularidades como ésta no lo son. Las empresas pueden estar tan enfocadas en la seguridad tecnológica que pasan por alto otras formas en las que se puede violar la privacidad.

“Son más comunes de lo que la gente cree”, dijo McGeveran. “Hay tanta atención a la ciberseguridad, y con razón, pero muchas preocupaciones sobre la privacidad médica son mucho más análogas que eso. Se trata de cosas que se escuchan por casualidad, se trata de registros en papel y en este caso se trata de un correo en papel”.

Más allá del pago en sí, se espera que la demanda ayude a cambiar la cultura de las empresas cuando se trata de la atención que se presta a la privacidad médica y a los derechos de las personas con VIH en particular. Para resaltar eso, los abogados usaron a “Andrew Beckett” como el seudónimo del demandante original, un hombre del condado Bucks, en Pennsylvania.

Es un guiño al personaje de Tom Hanks en la película de 1993 “Philadelphia”, a quien despiden de una firma de abogados luego de enterarse que tenía VIH. Este “Beckett” está tomando PrEP.

“El VIH aún tiene un estigma negativo asociado, y me complace que este acuerdo alentador con Aetna muestre que la información relacionada con el VIH merece un cuidado especial”, dijo el hombre conocido como Beckett en un comunicado.

Esta historia es parte de una alianza que incluye aÌý,ÌýÌýyÌýKaiser Health News.

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Desintoxicarse uno mismo: una pesadilla digna de “Freddy Krueger†/news/desintoxicarse-uno-mismo-una-pesadilla-digna-de-freddy-krueger/ Fri, 07 Jul 2017 19:31:33 +0000 http://khn.org/?p=750135 Para cuando Elvis Rosado cumplió 25 años, era adicto a los opiáceos y ya había estado en la cárcel por vender drogas para poder solventar su adicción.

“Yo estaba en un estado en el que decía ‘tengo que patear cosas, tengo que romper todo'”, dijo.

Para Rosado, que vive en Philadelphia, las drogas se habían convertido en una forma de disociarse de “la realidad que era la vida”. Despertaba necesitando físicamente los medicamentos para poder funcionar.

Su decisión de dejar de consumir lo impulsó a otro capítulo desafiante de su adicción y una de las experiencias físicas y mentales más intensas que pudo haber imaginado: la desintoxicación.

“Los síntomas son horribles”, contó Rosado.

Este contenido puede usarse de manera gratuita (detalles).

Hay centros de recuperación y tratamiento que pueden ayudar a las personas a dejar de usar drogas, de hecho, es . Pero esta ayuda puede ser costosa, y las listas de espera para programas estatales o financiados por la ciudad generalmente son muy largas.

Así que, ¿desintoxicarse uno mismo puede ser la solución? En la mayoría de los casos, la respuesta es no.

De hecho, un movimiento creciente dentro del campo de la medicina de la adicción desafía por completo la idea de la desintoxicación y la presunción de que cuando la gente logra “limpiarse” de productos químicos, está en camino a la recuperación.

“Es un mito realmente pernicioso y tiene implicaciones erróneas”, dijo el doctor Frederic Baurer, presidente de la .

Pero Rosado contó que, en ese momento, necesitaba poner fin a su “larga relación de amor” con la codeína. Al igual que la oxicodona y la morfina, la codeína es un opioide. En la cárcel, estos fármacos estaban disponibles fácilmente, recordó Rosado, a través de amigos y compañeros de celda.

Cuando decidió parar, no pidió ayuda al personal de la clínica de la cárcel, que podría haberle dado medicamentos para los síntomas de abstinencia. Rosado dijo que, si tomaba algo, “en mi cabeza era como si todavía hubiera estado usando. Así era como yo lo veía”.

Las primeras horas fueron graduales, como el comienzo de una gripe, recordó. Pero entonces empezó a sudar y temblar, su corazón se aceleró y comenzó a vomitar. Luego de unas 12 horas, dijo Rosado, estaba recordando lo agradable que era la intoxicación alimentaria comparada con esto. Dijo que sus calambres en el estómago parecían “tener a Freddy Krueger dentro de ti tratando de abrirse camino”.

Rosado no podía dormir; yacía en el suelo frío, temblando. “Tuve días en los que sentí que quería estar muerto”, dijo.

“Mi compañero de celda seguía diciendo ‘¡Mírate! Usa una bolsa o ve a la enfermera”.

Durante la semana siguiente, los síntomas intensos disminuyeron lentamente. Estaba exhausto, deprimido, irritable y dolorido.

Luego vino la siguiente fase: la tentación de recaer.

“Es una batalla”, dijo Rosado.

Rosado recordó escuchar una voz en su cabeza diciéndole que sería mucho más fácil ceder. “Toma algo, toma un poco”, le decía la voz.

La mayoría de las personas no pueden tolerar la desintoxicación de los opiáceos sin apoyo o medicamentos para aliviar los síntomas de abstinencia, dijo el , psiquiatra especializado en adicción en la Universidad de Pennsylvania.

La diarrea y el vómito de la abstinencia pueden hacer que una persona se deshidrate, lo que puede causar complicaciones graves, incluso la muerte en algunos casos. Y Kampman se preocupa por los grandes riesgos de los pacientes que tratan de automedicarse para evitar estos efectos secundarios o frenar el deseo de drogas.

“Si usted va a usar los medicamentos que un médico utilizará para hacer la desintoxicación, que podría ser la metadona o la buprenorfina, o incluso un medicamento para la presión arterial como la clonidina o sedantes, todos esos medicamentos son peligrosos”, dijo Kampman.

Pueden tener interacciones adversas con otros fármacos, y en el caso de la metadona, dijo, existe la posibilidad de que una persona pueda sufrir una sobredosis si no tiene supervisión médica.

Pero la mayor preocupación de Kampman cuando se trata de desintoxicación es la tasa de éxito extremadamente baja.

“Lo que más me molesta de pensar que la desintoxicación es un tratamiento adecuado es que sabemos que simplemente no funciona”, dijo. “Tenemos una larga historia de poner a las personas en desintoxicación, seguido por el tratamiento sin drogas que resulta en la recaída en un número abrumador de casos”.

Y si el paciente vuelve a usar, hay un mayor riesgo de sobredosis porque su tolerancia se ha reducido.

La adicción, dijo Kampman, no es algo de lo que el cuerpo pueda liberarse. Es una enfermedad.

Hace tres años, la doctora , directora del Instituto Nacional de Abuso de Drogas, . Y Baurer va más allá, sugiriendo que es mejor abandonar toda noción de desintoxicación.

“Creo que el término desintoxicación tiene connotaciones negativas”, dijo Baurer, que ha estado tratando a personas adictas durante casi tres décadas. También ha estado involucrado en un grupo de trabajo de la ciudad que evalúa la epidemia de opioides en la región. Dijo que el foco debe estar en un plan de tratamiento estabilizador, no en la desintoxicación.

Baurer es director médico en en Philadelphia, un centro de recuperación que cuenta con una unidad de desintoxicación interna de 21 camas. Pero, según Baurer, la unidad hace mucho más que sacar drogas del sistema de una persona.

“Está estructurado”, dijo. Los pacientes tienen tiempo de reflexión. Se controlan sus síntomas. Se reúnen con consejeros, se les propone un plan de tratamiento a largo plazo y, lo que es más importante, reciben medicamentos como la metadona para controlar los deseos de recaer.

Algunos de los medicamentos se dirigen a los mismos receptores en el cerebro que otros opioides, pero lo hacen por un período de tiempo más largo, lo que reduce los síntomas. Otra opción, Vivitrol, bloquea los receptores de opioides, lo que inhibe la capacidad de la persona de drogarse.

Baurer enfatizó en que no hay una fórmula.

“Tenemos que considerar todas las herramientas que están a la mano para ayudar a alguien a estar bien”, dijo.

Elvis Rosado dijo que primero desarrolló sus propias herramientas para afrontar el problema en la cárcel. Las rejas lo protegieron de las tentaciones de su antiguo barrio y encontró grupos de apoyo y consejería.

Sin embargo, puede ser uno de los pocos que trató de desintoxicarse por su cuenta y tuvo éxito.

Desde su liberación de la cárcel, Rosado ha obtenido títulos en salud mental y servicios sociales, y trabajó en centros de tratamiento. Ahora lidera los esfuerzos de prevención de sobredosis para , una organización sin fines de lucro que ofrece servicios preventivos en toda la región.

Rosado no cree que su enfoque de desintoxicación sea para todos.

“Si no damos a las personas el tiempo para comenzar a tener pensamientos claros y diseñar juntos un plan para sacar los químicos de su organismo, no les está haciendo ningún favor”, dijo.

Rosado también atribuye su propio éxito a largo plazo a una conversación muy específica que tuvo mientras estaba preso. Fue durante una llamada telefónica con su novia.

“Ella dijo, ‘estoy embarazada, ¿qué vamos a hacer al respecto?’ Y yo le dije: ‘Lo tenemos. Nos quedamos con el bebé’”.

Recordó que, en ese momento, se hizo a sí mismo la promesa de ser un buen padre. para él, al menos, eso funcionó. Pero, dijo, su compañero de celda también trató de librarse del hábito, y a los pocos meses de ser quedar libre, recayó y murió de una sobredosis.

Esta historia es parte de una alianza con WHYY’sÌý, yÌý.

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Do-It-Yourself Detox Can Be ‘Freddy Krueger’ Scary — And Usually Fails /news/do-it-yourself-detox-can-be-freddy-krueger-scary-and-usually-fails/ Fri, 07 Jul 2017 09:00:36 +0000 http://khn.org/?p=746196 By the time Elvis Rosado was 25, he was addicted to opioids and serving time in jail for selling drugs to support his habit.

“I was like, ‘I have to kick this, I have to break this,’ ” he said.

For Rosado, who lives in Philadelphia, drugs had become a way to disassociate from “the reality that was life.” He’d wake up physically needing the drugs to function.

His decision to finally stop using propelled him into another challenging chapter of his addiction and one of the most intense physical and mental experiences he could have imagined: detoxing.

“The symptoms are horrific,” Rosado said.

There are recovery and treatment centers that can help people quit using drugs — in fact, it’s aÌý. But this help can be expensive, and waiting lists for state and city-funded programs are often extremely long.

This story is part of a partnership that includes , and Kaiser Health News. It can be republished for free. (details).

But at the time, Rosado said, he needed to end his “longtime love affair” with codeine. Like oxycodone and morphine, it’s an opioid. In jail, these drugs were easily available, Rosado recalled, through friends and cellmates.

When he decided to stop, he didn’t ask for help from the jail’s clinic staff, who could have given him medicine for the withdrawal symptoms. Rosado said that, if he took anything, “in my head I was like, ‘I’m still using.’ That’s how I was seeing it.”

The first few hours were gradual, like the onset of the flu, he recalled. But then he started sweating and shaking, his heart raced and he started throwing up. About 12 hours in, Rosado said, he was reminiscing about how pleasant food poisoning was compared to this. He said his stomach cramps felt like “having Freddy Krueger inside you trying to rip his way out.”

Rosado couldn’t sleep; he lay on the cold floor, shivering. “I had days where I felt like I wished I was dead,” he said.

“My cellmate kept saying ‘Look at you! Use a bag or go to the nurse.’ ”

Over the next week, the intense symptoms slowly subsided. He was exhausted, depressed, irritable and sore.

Then came the next phase: the temptation to slide back.

“It’s a battle,” Rosado said.

He remembers a voice in his head telling him it would be so much easier to give in. “Take something, take a little bit,” he recalled the voice saying.

Most people can’t tolerate detoxing from opioids without support or medications to ease the withdrawal symptoms, saidÌýÌýa psychiatrist who specializes in addiction at the University of Pennsylvania.

Diarrhea and vomiting from withdrawal can make a person dehydrated, and that can lead to severe complications, even death in some cases. And Kampman worries about the big risks of patients trying to self-medicate to avoid these side effects or drug cravings.

“If you’re going to use the medications that a doctor would use to do detoxification, which might be methadone or buprenorphine, or even a blood pressure medicine like clonidine or sedatives, all those medications are dangerous,” said Kampman.

They can have adverse interactions with other drugs, and in the case of methadone, he said, there is a possibility that a person could overdose without physician oversight.

But Kampman’s biggest concern when it comes to detoxing is the extremely low success rate.

“What bothers me most in thinking detox is adequate treatment is that we know that it just doesn’t work,” he said. “We have a long history of putting people into detox, followed by drug-free treatment that results in relapse in an overwhelming number of cases.”

And if the patient goes back to using, there’s a higher risk of overdose because their tolerance has gone down.

Addiction, Kampman said, isn’t something you can just flush out of your body. It’s a disease.

Three years ago,ÌýÌýthe director of the National Institute of Drug Abuse told a Senate committeeÌý

When people addicted to opioids first quit, they undergo withdrawal symptoms, which may be severe (pain, diarrhea, nausea, vomiting, hypertension, tachycardia, seizures). Medications can be helpful in this detoxification stage, easing craving and other physical symptoms that can often trigger a relapse episode. However, this is just the first step in treatment. Medications have also become an essential component of an ongoing treatment plan, enabling opioid-addicted persons to regain control of their health and their lives.

Baurer goes further, suggesting it’s best to abandon the whole notion of detox, period.

“I think the term detox has negative connotations,” said Baurer, who has been treating people with addiction for nearly three decades. He’s also been involved in a citywide task force assessing the opioid epidemic in the region. He said the focus should be on a stabilizing treatment plan, not on detox.

Baurer is medical director atÌýÌýin Philadelphia, a recovery center that has an in-house detox unit of 21 beds. But, according to Baurer, the unit does a lot more than getting drugs out of a person’s system.

“It’s structured,” he said. Patients have reflection time. Their symptoms are monitored. They meet with counselors, come up with a long-term treatment plan and, perhaps most importantly, they get medications like methadone to manage cravings. Some of the medications target the same receptors in the brain as other opioids, but they do it for a longer period of time, which reduces symptoms. Another option, Vivitrol, blocks opioid receptors, which inhibits the person’s ability to get high.

Baurer said there’s no one formula.

“We have to consider all the tools that are out there to support someone in getting well,” he said.

Elvis Rosado said he first developed his coping tools in jail. The bars protected him from the temptations of his old neighborhood and he found support groups and counseling.

Still, he may be one of the few who tried detoxing on his own and succeeded.

Since his release from jail, Rosado has gotten degrees in mental health and social services, and worked in treatment centers. He now leads overdose prevention efforts forÌý, a nonprofit organization that provides prevention services across the region.

Rosado doesn’t think his detox approach is for everyone.

“If we don’t give individuals the time to start to have clear thoughts and put a plan together, getting the chemical out of their system — you’re not doing them any favors,” he said.

Rosado also credits his own long-term success to a very specific conversation he had while he was still locked up. It came during a phone call with his girlfriend.

“She goes, ‘I’m pregnant, what are we going to do about it?’ And I said, ‘We keep it. We keep the baby.’ ”

He recalled making a promise to himself in that moment to be a good father. And for him, at least, that worked. But, he said, his cellmate back in jail tried kicking the habit, too, and within months of being released, he relapsed and died of an overdose.

This story is part of a reporting partnership with WHYY’sÌý, andÌý.

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Pre-Obamacare, Preexisting Conditions Long Vexed States And Insurers /news/pre-obamacare-preexisting-conditions-long-vexed-states-and-insurers/ Wed, 26 Apr 2017 09:00:22 +0000 http://khn.org/?p=722645 For most of his life, Carl Goulden had near-perfect health. He and his wife, Wanda, say that changed 10 years ago. Carl remembered feeling “a lot of pain in the back, tired, fatigue, yellow eyes — a lot of jaundice.”

“Gray-like skin,” Wanda added. His liver wasn’t working, she explained. “It wasn’t filtering.”

Carl was diagnosed with hepatitis B. He is now 65 and on Medicare, but back then he had a flower shop in Littlestown, Pa., so he had been buying health insurance for his family on the market for small businesses and the self-employed.

The medications to manage Carl’s hepatitis cost more than $10,000 a year — and if he ever needed a liver transplant, as some people with hepatitis eventually do, the costs could be formidable. Thank goodness they had health insurance, the couple thought.

This story is part of a partnership that includes , and Kaiser Health News. It can be republished for free. (details), Pennsylvania’s insurance commissioner, said that steep increase in insurance rates was legal. And before the Affordable Care Act became law, a patient like Goulden might have had a hard time buying another policy. He likely would have been turned down by private insurers because he had a “preexisting” medical condition.

A family like the Gouldens would “just have been out of luck,” Miller said.

Pennsylvania: The Wild, Wild WestÌý

Before the ACA, states had differing approaches to handling preexisting conditions.

Pennsylvania was typical. Until the ACA mandated that insurers treat sick and healthy people equally, buying insurance seemed as lawless as the Wild West.

Insurers couldn’t overtly kick people off a plan if they got sick, but they could find ways to charge them much more, even those whose chronic condition wasn’t that serious — such as acne. For individuals looking to sign up in the first place, “an insurance company could simply decline to offer you insurance at all because of your preexisting condition,” Miller said.

Insurers who did offer a policy to someone with a preexisting condition might have done so with a catch — the plan could require a waiting period or might exclude treatment for that condition.

“So, let’s say you had diabetes, for example,” Miller said. “You might have been able to get coverage for an unexpected health care need that arose, but you’d still be on your own for any treatment and management of your diabetes.”

From the perspective of an insurance company, these practices were intended to prevent the sick from signing up for a health plan only when they needed costly care.

Pennsylvania tried to partially solve this problem by creating a scaled-back health plan, called adultBasic, for those with incomes too high to qualify for Medicaid who didn’t have any coverage. Household incomes had to be less than 200 percent of the federal poverty level, which at that time would have been $21,660 for an individual. More than in 2011, and nearly half a million were on the waiting list, Ìýbut the plans didn’t include coverage for mental health care, prescription drugs or more than two nights in a hospital. Even so, Miller said, the strategy proved too expensive for the state.

“That program was spending $13 million to $14 million a month when it was shut down,” she said.

High-Risk Pools

More than 30 other states dealt with preexisting conditions by setting up what are called , a separate insurance plan for individuals who couldn’t get health coverage in the private market.

These plans could be lifesavers for some people with conditions like cancer — which can cost tens if not hundreds of thousands of dollars to treat.

The experiences with high-risk pools varied, but states faced challenges, said John Bertko, an insurance actuary with the state of California. And the main problem was the high cost.

“The one in California, which I was associated with, limited annual services to no more than $75,000, and they had a waiting list. There was not enough money,” Bertko said. “The 20,000 people who got into it were the lucky ones. At one point in time, there were another 10,000 people on a waiting list.”

The pools also had catches: Premiums were expensive, as were out-of-pocket costs. And plans often excluded the coverage of preexisting conditions for six months to a year after the patient bought the policy.

New Jersey: Preexisting Conditions Covered, With A Catch

Around that same time, across the Delaware River, the state of New Jersey was trying something different.

“Insurers could not take health status into account,” saidÌý, director of Rutgers’ Center for State Health Policy who has been analyzing the New Jersey experience.

Before the ACA, New Jersey was one of just a handful of states that prohibited insurers from denying coverage to people with preexisting conditions. Insurers also weren’t allowed to charge people significantly more for having a health issue, and the plans had to offer robust coverage of services.

There was a one-year waiting period for coverage of a preexisting condition, but a larger issue became cost. The entire individual market in New Jersey became expensive for everyone, regardless of their health status, Cantor said. Because there was no mandate to have health insurance coverage, those who signed up tended to need it, and healthy people did not enroll.

And so, “the prices went up and up,” he said. And the premiums and enrollment “went down and down.”

The state tried to address this in the early 2000s by introducing a “skinny” health plan, Cantor said.

“By that I mean very few benefits,” he explains. “It covered very, very limited services.”

The plan was affordable and really popular, especially among the young and healthy people, and about 100,000 people signed up. But if a person had a health need, manyÌýcosts shifted to the individual.

“It left people with huge financial exposure,” he said.

That’s, in part, why the ACA included a rule that insurance plans now must offer good benefits and be available to everybody. In exchange, insurers have the mandate and subsidies — so that everybody will buy in.

Cantor said these experiences point to an ongoing quandary: A small portion of people consume a big chunk of health care costs. It’s hard to predict who will cost a lot — or when.

This story is part of a partnership that includes , and Kaiser Health News.

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Travel Ban Adds Stress To ‘Match Week’ For Some Doctors /news/travel-ban-adds-stress-to-match-week-for-some-doctors/ Mon, 20 Mar 2017 09:00:31 +0000 http://khn.org/?p=711255 Dr. Amin Rabiei knew he wanted to work in medicine from an early age. While growing up in Iran, he watched his dad experience seizures and his mom struggle to help. Rabiei went on to medical school in Iran, then practiced at a rural clinic there, all the while working toward an important career point that : getting matched to a medical residency training program in the United States.

“I decided to come here to have better opportunities for research and clinical education,” said Rabiei, who is already in Philadelphia on a research visa doing postdoctoral research at Thomas Jefferson University. His ultimate aim? “Hopefully, to share this information and these skills for the people who need this in the undeveloped countries.”

Rabiei hopes to train in neurology with a focus on epilepsy. For international medical graduates like Rabiei, becoming eligible for residency training in the U.S. is a rigorous process that can take years of planning, financing and work. In general, landing one of these coveted spots, a requirement for anyone aspiring to train and practice medicine in the U.S., is already competitive; about 32,000 slots are available to an applicant pool of 42,000. Last year, about the applicants from outside the U.S. were successful in getting a match.

This story is part of a partnership that includes , and Kaiser Health News. It can be republished for free. (details) nationwide, at least temporarily, last week.

Here’s why: Pinsky says President Trump’s executive orders in the visa process for foreign medical graduates — and the ambiguity puts the residency programs, as well as the applicants, in a bind. Though the training programs rank applicants according to their merits and qualifications, the matching system hinges on these young doctors being available and ready to start caring for patients in July. Many residency programs can’t risk having an empty seat because of visa processing delays.

“Program directors have to weigh various factors of applicants, from their medical knowledge, ability to communicate, their observed level of empathy, their leadership capabilities — and their ability to be available when July 1 comes,” Pinsky said.

He estimates that roughly 300 to 400 applicants this year from the countries covered by the White House executive orders would now need to apply for a visa — or change or renew the one they have — to train in the U.S.

About are already in medical residencies in the United States.

Further complicating this year’s “match week,” most residency programs ranked their preferences of applicants on Feb. 22 — in between the issuing of the first and second executive orders on travel restrictions. Those match decisions wereÌýreleased Friday.

“The timing and uncertainty of the executive order could not have come at a worse time,” Pinsky said.

The first White House executive order restricting travel came out in January and applied to seven Muslim majority countries: Iran, Iraq, Libya, Somalia, Sudan, Syria and Yemen. , announced in early March, removed Iraq from the list. It bans new visas from the remaining six countries for 90 days, but also that allow U.S. entry — such as for lawful permanent residents of the U.S. and those with other valid documents.

The Educational Commission for Foreign Medical Graduates, which is based in Philadelphia, is responsible for all international graduates who wish to apply for residency and practice medicine in the U.S. This involves administering qualifying exams and overseeing other background checks. ECFMG is also closely involved in the visa process, as a main sponsor of for international graduates — the most common type of visa granted for training and practicing medicine in the United States. A smaller number of institutions may directly sponsor residents through an .

“If someone has a visa, as I understand, even though they’re from one of these six countries, it’s not an issue,” Pinsky said.

Even so, it’s still unclear who is eligible to get a visa or how long it will take. His organization is awaiting clarification from the federal government on that process and whether, as before, the process can be expedited in order to be completed by the start of a medical residency.

, vice president of the , said large residency programs may be less affected by the executive orders than small ones.

“I think our bigger institutions, like Penn and CHOP [Children’s Hospital of Philadelphia], have very much said, ‘Just on principle we’re going to rank these people if we think these are the best people,'” Grover said.

“You know, if I’m Penn and I’ve got an internal medicine class of, like, 45 residents, maybe I can take more of a chance. If one resident doesn’t come maybe I can figure it out.” (Indeed, a spokesperson from Penn said they don’t think the executive order will impact the institution’s ability to train residents who match there.)

But waiting for somebody’s visa to come through can be a greater risk for smaller programs, Grover said. “You can’t afford to lose 10 or 25 percent of your class. It’d be a big gamble for them.”

heads a small pediatric residency program at Einstein Medical Center in North Philadelphia, and said about half the residents there are medical graduates from another country. The program can’t afford to accept someone in their new class of 10 if there’s a chance they might not be able to start in July because of visa issues.

“It’s unfortunate,” Wimmer said. “Many work their tails off to get to the U.S. We might be losing a lot of talent.”

While the United States has long been known as an epicenter for top medical research and care, Pinsky worries that reputation and the whole system could suffer if an uncertain immigration climate discourages young doctors from trying to train and practice in the United States.

“There could be an issue of access to health care as well as a quality situation,” he said.

Rabiei said he and his Iranian peers are trying to stay positive.

They feel encouraged by the support they’ve received from colleagues and their universities.

“When you try so hard to get to your dream, and all of a sudden you feel that there are some issues — unexpected problems — it’s a really bad feeling,” he said.

Rabei was thrilled to learn Monday that he has been offered a position by at least one institution. He knowsÌýother Iranians who were not so lucky. And on Friday, he got very good news: He matched with Drexel University College of Medicine. He will be able to stay in the United States —Ìýand even in Philadelphia.

This story is part of a partnership that includes , and Kaiser Health News.

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Dentists Work To Ease Patients’ Pain With Fewer Opioids /news/dentists-work-to-ease-patients-pain-with-fewer-opioids/ Wed, 08 Mar 2017 10:00:16 +0000 http://khn.org/?p=705351 Firsts can be life-changing — think about your first kiss, your first time behind the wheel of a car. But what about the first time you got a prescription for a narcotic?

James Hatzell, from Collingswood, N.J., is now a technology officer for a college addiction treatment program. He didn’t realize it at the time, but that spring day of his junior year of high school — seven years ago — was a pivotal moment in his life.

“We’re in our 2001 Honda Odyssey minivan, driving to the dentist,” Hatzell recalled. “And we get there, and I’m just pumped. I was very excited to get my wisdom teeth out.”

The prospect of pain didn’t thrill the teen, but he’d heard from friends that when the dentist took out his teeth, he’d get his very own bottle of pain pills.

Those pain pills, Hatzell now says, eventually derailed his life.

Dentists have long been of immediate-release opioids like Vicodin and Percocet for the pain from tooth extractions. That’s a lot of pills and teeth; annually more than 3.5 million people, mainly young adults, have their wisdom teeth removed.

This story is part of a partnership that includes , and Kaiser Health News. It can be republished for free. (details) of drug use has been fueled by the misuse of prescription painkillers.

So dentistry is at a crossroads. Many in the field are now reassessing their prescribing habits, with issuing new guidelines for patients and practitioners. As of this year, Pennsylvania requires new dentists and those renewing their clinical license to get training in the best practices of prescribing opioids.

Hatzell says he was always a little afraid of narcotics in high school, until that day he had dental surgery. He’d tried Vicodin recreationally before that, he says, but with caution. Friends would find an extra pill in a medicine cabinet at home; they’d crush it, mix it with pot and share it.

But getting his own prescription from a health professional felt different, Hatzell recalled. It seemed legitimate — like maybe it wasn’t as dangerous as he’d feared.

On the way home from the dentist’s office that day, Hatzell was still high from the drugs he was given during the procedure and could not wait to pop his first pill.

His mom noticed.

“We got home, and my mom took the pills and was like, ‘You can’t have these,’ ” he said.

But he knew where she’d hid the bottle. When she wasn’t watching, he sneaked into her room, emptied out the pills and replaced them with Advil.

“I definitely was every parent’s worst nightmare,” Hatzell said, laughing.

He can joke about that day now, he said, but what opioids did to him and his family wasn’t funny. A few years later, he was arrested for dealing drugs in college.

in the Journal of the American Dental Association estimates that dentists are responsible for 12 percent of prescriptions for fast-acting opioid pain relievers — just below general practitioners and internal medicine doctors as top of common opioids. Roughly 23 percent of opioids in the U.S. are used non-medically, according to the study.

, a dentist who specializes in oral and maxillofacial surgery in Devon, Pa., said that when he started out as a dentist more than three decades ago it was common to prescribe a bottle of 30 or more narcotic pills after procedures such as a wisdom tooth extraction. He now calls that excessive prescribing.

“Dentists don’t like to see patients in pain,” Funari explained. “We tend to be compassionate people, and I think we were falling into a trap we were creating ourselves.”

In 2014, Funari joined a group tasked by the Pennsylvania Department of Health to develop prescribing guidelines for dentists. In reviewing the science, he and his colleagues realized there’s a to address standard dental pain.

“Non-steroidal anti-inflammatory drugs — the Motrins, the Advils, the Aleves — when used in a certain way, are very effective,” Funari said. “More effective than the narcotics.”

NSAIDs reduce inflammation, which is a main source of the pain, he said. And because wisdom tooth removal is so common, it has actually been an ideal procedure to study from this alternative in treating pain.

The that Funari and his colleagues came up with are the state’s first to tackle how to best use a combination of opioids and other drugs to manage pain in dental patients. National discussions have been expanding, too.

Dr. Paul Moore, at the University of Pittsburgh’s School of Dental Medicine, studies the relative usefulness of ibuprofen and other NSAIDs in acute pain management, and worked on a recent update of the American Dental Association’s . It was the national group’s first update on the topic in a decade, Moore says.

The effort to get dentists and dental students to be wiser prescribers recently became personal for Moore. Among the more than 3,000 overdose deaths in Pennsylvania last year, one young man was Moore’s nephew. The growing particularly concerns him.

“I’m very sensitive to the issue,” he said.

Prescribing more pills than are needed to mitigate pain, Moore said, leaves extra pills or an unused prescription that can be sold or abused.

Dr. Elliot Hersh, a at the University of Pennsylvania School of Dental Medicine and a research collaborator of Moore’s, said he regularly brings in a retired narcotics officer to address his class of dental students.

“I’ve been teaching my students that you have to be really, really careful with these drugs,” he said. “That if you write too many of these prescriptions, for either good or bad intentions, either the state dental board and/or the DEA [Drug Enforcement Agency] is going to come down on you.”

Hersh saidÌýone of the biggest hurdles in improving prescribing habits is countering — among his students, practicing dentists and patients — long-held misunderstandings about the pain-relieving power of less addictive drugs.

NSAIDs work at least as well as opioids, he said; they just haven’t received as much hype, because they’re available over the counter.

“A lot of the lay public believes if they’re available over the counter, they’re weak and they don’t work,” Hersh said.

Hatzell is 23 and has been in recovery for his opioid addiction for three years. He says one of the most terrifying thoughts he faces as he navigates his recovery is that he might need surgery one day and again need pain medication.

These days, whenever he goes to a dentist or doctor, he makes it a point to say right up front that he cannot take opioids.

This story is part of a reporting partnership with WHYY’s , NPR and .

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Children Exposed To Hepatitis C May Be Missing Out On Treatment /news/children-exposed-to-hepatitis-c-may-be-missing-out-on-treatment/ Thu, 28 Jul 2016 09:00:23 +0000 http://khn.org/?p=643276 Several times a month, Jessica Wen, a pediatrician specializing in liver diseases, has a teenager show up at her clinic at the Children’s Hospital of Philadelphia with an unexpected diagnosis: hepatitis C.

Hepatitis C virus, or HCV, is the most common bloodborne infection in the U.S. and a leading cause of liver failure and cancer. Injection drug use is a common risk factor, as is receiving a blood transfusion before 1992. But some of the teens Wen sees picked up the illness another way: at birth, from their mothers.

“I have diagnosed moms after diagnosing the kids,” WenÌýsaid, referring to mothers who have hepatitis C, didn’t know it and then passed it to their babies during childbirth. Wen estimates that about 1 or 2 of every 1,000 young children have chronic hepatitis C.

A by the Philadelphia Department of Health points to what Wen and others in the medical profession see as a worrisome trend: Children with hepatitis C may be unaware of their diagnosis and the potential need for treatments down the road in order to prevent long-term liver damage.

This story is part of a partnership that includes , and Kaiser Health News. It can be republished for free. (details), lead author of the study. “When you think about children, you hope that the number would be 100 percent, that it should be in the interest of every provider to be doing the best they can to get information to the next provider.”

Kuncio, an epidemiologist with the city, worries that people who don’t know they contracted hepatitis C as babies won’t get the health care they need or realize they could spread the virus to others through blood-to-blood contact. It’s a concern intensified by a rise in both injection drug use and hepatitis C among women of childbearing age, she said.

“It’s a call to arms to figure out how we can do this better,” said , who specializes in pediatric liver diseases and hepatitis C at the University of Colorado School of Medicine.

Not so long ago, the lack of drugs to cure hepatitis C made screening less of a priority. But in 2013, the Food and Drug Administration approved the first of several drugs that effectively eliminate the virus. Now, with access to these , the condition has gone from chronic and debilitating to curable.

Narkewicz and others say the is to prove these treatments are safe and effective in children. Clinical trials are underway, and he thinks the drugs could become available for children in the next year or two.

But unlike HIV, which has safe and effective treatments that can dramatically reduce transmission of the virus from mother to child, “for hepatitis C, there are in a mom or in a newborn,” said Narkewicz.

Hepatitis C in children may be lacking attention for another reason: Perinatal transmission rates are a lot lower for hepatitis C compared to hepatitis B and HIV. For every 100 babies born to women with HCV, five to seven will contract the virus. Of those who do get it, 30 to 40 percent will clear it on their own before the age of two, said Narkewicz. That’s why the current for children exposed to HCV call for monitoring and then screening them at 18 months with an antibody test.

But up to 15 percent of those born with HCV will develop a more aggressive form of the disease during adolescence, said Narkewicz, which can result in advanced fibrosis or liver scarring that can progress over time. “It’s a small percentage, but it’s still a real number,” he said.

The medical community really hasn’t done a good job of projecting the costs and benefits of early identification and treatment in children, according to , a pediatrician at UNC Children’s Hospital in Chapel Hill, N.C.

“A lot of these other issues related to mom-to-infant transmission, it really all fallen by the wayside,” Javeri said. “[The conversation] still falls on, we don’t have resources to treat patients that are the priority right now.”

Having new drugs to treat hepatitis C in children will be a game-changer, according toÌý, a pediatrician at the University of Florida Health System in Gainesville.

“The old dogma was, why screen mothers if there’s nothing to be done?” said Gonzalez-Peralta, who has also been gaps in identifying children infected with HCV.

He said that while drugs to prevent transmission are not yet available, there are promising developments. “Now we’ve got drugs that potentially might be useful in preventing maternal-fetal transmission. This is going to become a hotter area,” he said.

Another issue under debate is for the virus. Dr. Damien Croft, an obstetrician at Hahnemann University Hospital in Philadelphia, doesn’t advocate it for everyone in the country. But he thinks it might be a good idea for his pool of patients. “There [are] enough women who are for hepatitis C in Philadelphia that maybe we should consider doing that.”

Croft also thinks it’s important to improve communication between obstetricians and pediatricians so the pediatrician will know which children are at higher risk for having hepatitis C and can recommend screening.

In the meantime, Philadelphia’s health department has begun working with health care providers and at-risk mothers in the city to improve the testing of infants born to women with hepatitis C, and when necessary, linking mother or child to specialists.

This story is part of a reporting partnership with NPR, WHYY’s health show The Pulse and Kaiser Health News.

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