David Tuller, Author at ºÚÁϳԹÏÍø News Fri, 23 Sep 2022 18:53:25 +0000 en-US hourly 1 https://wordpress.org/?v=6.8.5 /wp-content/uploads/sites/2/2023/04/kffhealthnews-icon.png?w=32 David Tuller, Author at ºÚÁϳԹÏÍø News 32 32 161476233 Sex Apps for Gay Men Join Forces to Fight Online Insults /news/article/mental-health-gay-sex-apps-fight-online-insults/ Fri, 10 Dec 2021 10:00:00 +0000 https://khn.org/?p=1417729&post_type=article&preview_id=1417729 Editor’s note: This article contains references to racial and ethnic slurs.

Corey Baker, a gay man in Columbus, Ohio, has seen many dating app profiles that include phrases like “Blacks — don’t apply.” Sometimes when he declines invitations, he said, men lash out with insults like “you’re an ugly Black person anyway.” And some of his friends have been slammed with the N-word in similar situations.

Many of these events occurred “when I didn’t think I was attractive or deserving of love,” he said. And they took an emotional toll. “If you’re experiencing a wall of people saying they’re not attracted to you, I think that does impact your mental health,” said Baker, who is 35 and a school librarian.

The notion of kinder, gentler rejections on hookup sites might seem like an oxymoron. Yet experts in sexual health — as well as users of gay meeting apps, like Baker — say the harshness of much online behavior can exacerbate low self-esteem and feelings of depression or anxiety. That toxic combination can also lead to impulsive and potentially unsafe sexual choices.

In response, Building Healthy Online Communities, or BHOC, an organization in the San Francisco Bay Area focused on HIV and STD prevention, has launched an effort to boost niceness on apps designed for men who have sex with men. “People in the LGBTQ community face discrimination externally, but we also have to acknowledge that there is discrimination within the community,” said BHOC director Jen Hecht.

Through surveys and focus groups, BHOC asked more than 5,000 users of nine gay apps how the sites could support better online behavior related to race, appearance, HIV status, age, disability, gender identity and other factors. It also sought advice on technical improvements the apps could make, such as offering users greater flexibility in conducting searches for contacts.

“If I can filter out people who wrote ‘no fats, no fems, no black people,’ I don’t even have to deal with seeing it,” wrote one respondent quoted in BHOC’s report on the data gathered from app users. Representatives for some of the participating apps said they welcomed the collaboration. “We’ve had a non-bullying policy since day one,” said David Lesage, marketing and social media director for Adam4Adam.

Mean online behavior is, of course, not limited to apps for men. When asked last month by email whether meeting sites that cater to the general population should also be trying to address the issue, Evan Bonnstetter, Tinder’s director of product policy, responded that the company was “unable to participate in this opportunity.” (Bonnstetter has since left Tinder.) Bumble, another site popular with heterosexuals, did not respond to a request for comment.

Gay and bisexual men, like other groups that face discrimination, have higher rates of depression, substance misuse and related mental health concerns. But John Pachankis, an associate professor at the Yale School of Public Health who studies gay men’s health, said his research has identified aggressiveness within the gay community as a major problem.

“I was initially quite surprised that gay men were consistently noting their treatment at the hands of other gay men as being a predominant stressor,” Pachankis said. Apps, he added, “are a site of a lot of potential rejection in a short amount of time in a way that is particularly anonymous and efficient and can be really detrimental.”

In one study, Pachankis and his colleagues simulated a gay app environment in which some research participants were exposed to dismissive comments and others to approving comments. (The comments were all computer-generated.)

In subsequent responses on questionnaires, the men exposed to the dismissive comments reported greater emotional distress and expressed more skepticism about the benefits of condoms. They were also more likely to choose riskier options in a card-playing game.

Given that the app environment is the source of stress, Pachankis said, it makes sense for BHOC and other public health organizations to try to influence it

Some respondents quoted in the BHOC report dismissed the initiative as silly or unwarranted. “If someone does not meet the preferences specified by the user for being ‘fat,’ ‘too old,’ or not the right ‘race,’ then too bad,” wrote one. “I find this overreach in striving to be PC as offensive and ridiculous.”

But most respondents recognized that apps could support better online behavior and reduce unnecessary pain, Hecht said.

“It’s a society-wide problem, and I do agree that gay men’s dating apps are not going to single-handedly address it, but that doesn’t mean they can’t play a role,” she said. “To the extent that the users get to control and customize, that will increase their positive experiences on the apps and decrease the likelihood that they’ll have these negative experiences.”

One popular recommendation from respondents was to allow all users, and not just paying customers, to block anyone they feel is being abusive. Another was to allow users to restrict who can see profile fields with potentially sensitive information, such as HIV status or gender identity. Respondents also believed apps could help diminish the pain of rejection by providing neutral, pre-written messages for users to send, such as “sorry, it’s not a match.”

Grindr, one of the participating apps, does not include standard rejection statements but is exploring this option to help users on both sides of what is inevitably a “high-intensity moment,” said Jack Harrison-Quintana, the company’s director of equality.

“It’s very easy to feel very rejected because you are getting rejected,” Harrison-Quintana said. “People experience a lot of hurt from things that are said to them online, and that is what we are trying to address.”

Jehangeer Ali Syed, an international development consultant in Washington, D.C., said he has been disturbed by being treated as an “exotic element” in online exchanges. Although he is not from the Middle East, some men “sexually objectify me as an ‘Arab stallion,'” said the 36-year-old Pakistani. “I have been called a ‘sand-[N-word],’” he added.

This sort of encounter, he said, “makes you doubt yourself, makes you feel insecure and makes you question if I’m doing anything wrong.”

BHOC noted in its report that many respondents were unaware of existing app features that could help them customize and control their experiences. The report called for apps to expand their educational efforts about these possibilities.

That suggestion resonated with Grindr’s Harrison-Quintana. Grindr already includes some of the options recommended in the report, he said, but it could do a better job of communicating with customers. “It’s not just about implementing features, it’s also about maybe letting users know those features are available to them,” he said.

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For Covid ‘Long Haulers,’ Battling for Disability Benefits Adds Aggravation to Exhaustion /news/article/for-covid-long-haulers-battling-for-disability-benefits-adds-aggravation-to-exhaustion/ Wed, 10 Mar 2021 10:00:00 +0000 https://khn.org/?p=1266864&post_type=article&preview_id=1266864 Rickie Andersen took a brief break from work in March after she fell ill. Her cough, fever and chills were typical covid-19 symptoms, but coronavirus tests were so scarce she could not obtain one to confirm the diagnosis.

After Andersen returned to her job as an information systems project manager in the San Francisco Bay Area, she struggled with profound fatigue, cognitive difficulties and other disabling complaints. For six months, she tried to keep awake during meetings and finish basic tasks that took much longer than before.

Finally, she decided to retain legal help so she could take advantage of the disability insurance coverage offered as an employee benefit. “I realized this is not going to be a short-term thing,” Andersen said.

Hundreds of thousands of people around the world are experiencing what is being called “long covid” — a pattern of prolonged symptoms following an acute bout of the disease. Many have managed to continue working through accommodations like telecommuting, cutting down on hours and delegating responsibilities.

Others have found it impossible to fulfill their professional obligations and are making the tough decision to stop working and seek disability benefits. But as they pursue the application process, they are discovering a particular set of challenges.

Given the lack of testing in the first months, many “long haulers,” like Andersen, have no laboratory proof of infection. While antibody tests can provide such evidence, their accuracy varies. Moreover, many of the reported symptoms, including fatigue and cognitive impairment, are subjective and not clearly linked to specific organ damage.

Beyond that, compiling a thorough record for a disability application and navigating the bureaucratic hurdles require sustained brain power, something many long-haul patients can no longer muster. Barbara Comerford, a New Jersey disability lawyer, said she received dozens of inquiries starting last fall from long haulers seeking advice on filing for disability and often citing what is being called “brain fog” as their main complaint.

“Most are people calling to say, ‘I thought I could do it. I can’t. My mind doesn’t function for more than really brief periods of time,’” Comerford said. She gave a presentation to the New Jersey State Bar Association in mid-February on how to develop evidence for such cases.

In the U.S., close to 30 million people have tested positive for the coronavirus, although many cases of infection are asymptomatic. What proportion might be affected by long-term illness isn’t known. Scientific understanding of the phenomenon is in its infancy.

In January, that around three-quarters of more than 1,700 covid patients who had been hospitalized in Wuhan, China, reported at least one ongoing symptom six months later. More recently, investigators from the University of Washington that around 30% of 177 patients who had tested positive for the coronavirus still reported symptoms when they were surveyed one to 10 months later.

The Social Security Administration provides long-term disability to American workers who qualify under , but applicants often get turned down on the first try. A few states, including California and New York, provide short-term disability benefits, in some cases for up to a year.

Tens of millions of Americans also have private disability coverage, most often as part of their employment benefit packages.

The maximum currently available to an individual through the Social Security Disability Insurance program is just over $3,000 a month. A typical private long-term disability plan might cover 60% of a beneficiary’s base salary, with a much higher maximum amount.

Sandy Lewis, a pharmaceutical industry researcher, fell ill last March with what she assumed was covid. She recovered but relapsed in April and again in May.

Through her employer-based insurance coverage, she received short-term disability for November and December, but the insurer, Prudential Financial, rejected her request for an extension. Soon after, she was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, a debilitating illness that can be triggered by viral infections.

Lewis, who lives outside Philadelphia, is planning to appeal Prudential’s rejection of the short-term extension and apply for long-term disability. But the matter is unlikely to be resolved before fall. The situation has left her feeling “devastated,” she said, and in serious financial distress.

“This has been such an arduous journey,” she said. “I have no income and I’m sick, and I’m continuing to need medical care. I am now in a position, at 49 years old, that I may have to sell my home during a pandemic and move in with family to stay afloat.”

In Lewis’ case, a Prudential reviewer noted that her symptoms were “subjective” and that there were “no physical exam findings to correlate with any ongoing functional limitations,” according to Cassie Springer Ayeni, an Oakland disability lawyer who is representing her as well as Andersen.

Prudential would not comment on a specific case. Evan Scarponi, chief claims officer, said in a statement that “our collective understanding of covid-19 and any associated long-term effects are still evolving” but that Prudential is “well-versed in evaluating both subjective and objective aspects of disability claims.”

Lawyers and advocates in the field expect the numbers of covid-related long-term disability applicants to rise this year. But it’s still too soon to detect any such increase, said a spokesperson for the American Council of Life Insurers, a trade association. Workers typically must be unable to work for half a year before becoming eligible for long-term disability benefits, and applying can itself be a lengthy process.

Brian Vastag, a former Washington Post science and health reporter with ME/CFS, stopped working in 2014 and then sued Prudential after it rejected his long-term disability claim. Insurance companies, he said, can easily find reasons to dismiss applications from claimants with chronic illnesses characterized by symptoms like fatigue and cognitive impairment.

“The insurance companies will often say, ‘There’s no objective evidence, so we have nothing to support your claim,’” said Vastag, who in 2018. “I’m worried about the long-covid patients who can’t work anymore.”

Claimants can appeal a rejection. If the insurer rejects the appeal, claimants have the right to sue, as Vastag did. However, most such cases fall under the . Because this federal law requires a losing insurer to pay the unpaid claims but does not provide for punitive or compensatory damages, critics argue it incentivizes the denial of coverage.

In the event of litigation, the court’s role is to assess the already existing evidentiary record. That means it is essential to present a robust case in the initial application or during the administrative appeal before any litigation begins, said Ayeni, the disability lawyer for Andersen and Lewis.

“It’s the only shot to build a record for the courts, to develop a full body of evidence,” she said.

However, a successful disability case ultimately depends on documenting inability to work, not on obtaining a specific diagnosis. To augment the medical evidence, Ayeni often sends clients for neuropsychological testing, investigations of lung function and other specialist assessments. She also gathers affidavits from family members, professional colleagues and friends to confirm patients’ accounts.

In Rickie Andersen’s case, the strategy worked. Recognizing how complicated the application process was likely to be, she sought legal help early on. The insurer contracted by her employer approved her for short-term benefits late last year and granted her application for long-term benefits in February.

“I knew all of it was completely exhausting, so it wasn’t something I thought I could do on my own,” Andersen said.

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Comienzan a popularizarse las pruebas de saliva para COVID, que son fáciles de usar /news/comienzan-a-popularizarse-las-pruebas-de-saliva-para-covid-que-son-faciles-de-usar/ Tue, 06 Oct 2020 20:56:50 +0000 https://khn.org/?p=1190712 Cuando estalló la pandemia de coronavirus en todo el país, los proveedores de servicios de salud y los científicos usaron el método estándar para detectar los virus respiratorios: introducir un largo hisopo en la nariz para obtener una muestra.

Pero pronto se hizo evidente la dificultad para realizar estas pruebas a gran escala.

Entre otras cosas, muchas personas eran reacias a someterse al desagradable procedimiento, llamado hisopo nasofaríngeo. Sólo pueden realizarlo trabajadores sanitarios capacitados, lo que los pone en riesgo de infección y aumenta los costos. Y los hisopos y los productos químicos necesarios para analizar el virus comenzaron a escasear.

En algunas jurisdicciones, como el condado de Los Angeles, de saliva y esputo. El proceso era supervisado, en lugares donde no era necesario bajarse del automóvil, por personal capacitado vestido con equipo de protección personal. Mientras, los investigadores comenzaron a buscar alternativas más baratas y sencillas, incluyendo el depositar saliva en un tubo de ensayo.

Pero la transición no ha sido inmediata. Reguladores y científicos suelen ser cautelosos con las nuevas tecnologías, no contrastadas, y tienen un sesgo comprensible hacia los protocolos bien establecidos.

“La saliva no es un fluido de diagnóstico tradicional”, dijo la microbióloga de Yale, Anne Wyllie, parte de un equipo cuya prueba basada en la saliva, llamada SalivaDirect, recibió en agosto la autorización para uso de emergencia de la Administración de Alimentos y Medicamentos (FDA). “Cuando nos golpeó un virus que salió de la nada, tuvimos que responder con las herramientas disponibles”.

Ocho meses después del inicio de la pandemia, la prueba de saliva gana adeptos y decenas de miles de personas en todo el país se someten a estas pruebas diariamente. Sin embargo, las pruebas de saliva representaban sólo un pequeño porcentaje de las más de 900,000 pruebas realizadas diariamente, en promedio, al finalizar septiembre.

Yale facilita su protocolo de forma abierta y recientemente para realizar la prueba. Además de la prueba de Yale, la FDA ha autorizado el uso de emergencia de otras, incluidas las versiones desarrolladas en la Universidad de Rutgers, la Universidad de Illinois en Urbana-Champaign, la Universidad de Carolina del Sur y la SUNY Upstate Medical University. Otro avance, , también de la FDA.

Desde el comienzo de la pandemia, el enfoque de la administración Trump sobre las pruebas se ha visto obstaculizado por errores y controversias.

Como agencia de salud clave durante una emergencia sin precedentes, la eficacia de la FDA depende de la confianza del público en la forma en que equilibra la necesidad de rapidez en la autorización de productos innovadores, como las pruebas de saliva y las vacunas, con la garantía de seguridad y eficacia, explicó Ann Keller, profesora adjunta de políticas de salud en la Universidad de California-Berkeley.

“Obviamente, se desea incorporar nuevas pruebas rápidamente para abordar la emergencia, pero aún así es necesario mantener los estándares”, dijo Keller. La presión de la Casa Blanca sobre la FDA ha complicado los esfuerzos de la agencia al socavarse su credibilidad e independencia, añadió.

Los virus respiratorios colonizan áreas de la cavidad nasal y en la parte posterior de la garganta. Además del enfoque nasofaríngeo, las muestras nasales obtenidas con hisopos más cortos y menos invasivos han demostrado ser eficaces para el coronavirus y se han llevado a cabo, aunque por lo general también requieren la participación de un trabajador de la salud. Los millones de pruebas rápidas que se distribuirán en todo el país, según un , se basan en hisopos nasales.

En los primeros meses de la pandemia, algunos estudios informaron de niveles significativos del virus en las secreciones orales. En , por ejemplo, se encontró el virus en la saliva de 11 pacientes de los 12 con infección confirmada de coronavirus.

En Los Angeles, que , se recogen más de 10,000 muestras al día, señaló Fred Turner, director ejecutivo de Curative, la empresa que la desarrolló.

Turner ve una ventaja en la estrategia del hisopo oral. El procedimiento de auto-exploración toma sólo de 20 a 30 segundos, mientras que producir suficiente saliva para la prueba puede tomarle a una persona de dos a tres minutos, y a veces más tiempo, dijo. “Puede que no parezca mucha diferencia”, comentó Turner, “pero lo es cuando se trata de hacer pasar a 5,000 personas por un lugar de pruebas”.

Los tres laboratorios de Curative procesan decenas de miles de pruebas de jurisdicciones de todo el país además de Los Angeles, dijo Turner. Una prueba desarrollada en , que se espera que esté disponible en los laboratorios estatales de Nueva York, también utiliza un hisopo oral.

Para la prueba de Curative, un trabajador de la salud supervisa la recolección de la muestra; recordándole a la gente que tosa para sacar fluidos, por ejemplo. Cuando los investigadores de la Universidad de Illinois lanzaron lo que llamaron “Proyecto Manhattan” para desarrollar una prueba de saliva, a mediados de junio, esperaban que la gente visitara un lugar de recolección, que escupiera en un tubo de ensayo, lo sellara y lo dejara sin la ayuda de un trabajador de la salud.

La universidad realiza pruebas, en estos momentos, a más de 10,000 personas al día en sus tres campus y trata de ampliar el acceso a las comunidades de todo el estado y del país, aseguró el profesor de química Paul Hergenrother, que dirigió el equipo de investigación. Al igual que la prueba similar de Yale, se ha puesto a disposición de otros laboratorios de forma gratuita. La Universidad de Notre Dame, en Indiana, la adoptó recientemente.

Al igual que las pruebas que utilizan hisopos nasofaríngeos y otros tipos de hisopos nasales, estas pruebas de saliva se basan en la tecnología PCR, que amplifica pequeñas cantidades de material genético viral para facilitar la detección.

Tanto las pruebas de Yale, como las de la Universidad de Illinois, han logrado simplificar el proceso eliminando un paso intermedio estándar: la extracción de ARN viral. Sus protocolos tampoco requieren el Medio de Transporte Viral, o VTM (los productos químicos generalmente utilizados para estabilizar las muestras después de su recolección).

“No se necesitan hisopos, no se necesitan trabajadores de la salud, no se necesita VTM y no se necesitan kits de aislamiento de ARN”, dijo Hergenrother.

En el , el equipo de Yale informó que detectó más ARN viral en las muestras de saliva que en las nasofaríngeas, y que una mayor proporción de las pruebas de saliva mostraron resultados positivos hasta 10 días después del diagnóstico inicial.

La Asociación Nacional de Baloncesto (NBA) aportó $500,000 en apoyo al proyecto de Yale, comunicó David Weiss, vicepresidente de la NBA. Dijo que la decisión del equipo de Yale de eliminar el proceso de extracción de ARN, que separa el material genético de otras sustancias que podrían complicar la detección, requería ajustes pero no comprometía el valor de la prueba.

“Cualquier prueba molecular que implique extracción de ARN va a ser, casi por definición, más sensible, pero también será más costosa y llevará más tiempo y utilizará suministros que son escasos”, explicó. “Si buscamos pruebas de detección para abrir escuelas y residencias de mayores, una prueba que sigue siendo muy sensible y mucho más barata es una innovación importante”.

Los precios de las pruebas de coronavirus varían mucho, superando los $100. Las pruebas basadas en los protocolos de Yale o de la Universidad de Illinois, que requieren materiales baratos, podrían estar disponibles por tan sólo $10.

El servicio de pruebas de Curative, que incluye la recolección y el transporte de las muestras, así como la parte del laboratorio, tiene un promedio de unos $150 por prueba, dependiendo del volumen; apuntó Clayton Kazan, director médico del Departamento de Bomberos del Condado de Los Angeles, que utiliza las pruebas.

A pesar de los avances en la recolección de muestras, las pruebas que utilizan la tecnología PCR —reacción en cadena de la polimerasa— todavía requieren un procesamiento en laboratorio. Los investigadores han estado investigando otros enfoques, incluyendo pruebas de antígenos basados en saliva, que podrían ser auto-administradas en casa y que proporcionarían resultados inmediatos. (Mientras que la PCR puede detectar material genético de coronavirus, las pruebas de antígenos buscan proteínas virales que pueden significar que hay una infección).

Al menos que busca autorización para uso de emergencia de una prueba de antígenos de saliva, aunque otras dos han abandonado los planes de desarrollar sus propias versiones por considerarlas inviables, . Mientras tanto, científicos de la Universidad de Columbia, la Universidad de Wisconsin y en otros lugares investigan el uso de la saliva con otro tipo de tecnología de pruebas rápidas.

“Hay mucho interés” en una prueba de saliva en casa, señaló Yvonne Maldonado, jefa de enfermedades infecciosas pediátricas de la Facultad de Medicina de la Universidad de Stanford.

“La gente está ansiosa por tener acceso a una prueba del tipo del kit para el embarazo”, dijo. “Básicamente se podría enviar a la gente un pequeño paquete con pequeñas tiras, cada día se saca una tira y se pone debajo de la lengua”.

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Easier-to-Use Coronavirus Saliva Tests Start to Catch On /news/coronavirus-saliva-tests-self-administered-easy-covid-screening/ Tue, 06 Oct 2020 09:00:01 +0000 https://khn.org/?p=1186812&preview=true&preview_id=1186812 As the coronavirus pandemic broke out across the country, health care providers and scientists relied on the standard method for detecting respiratory viruses: sticking a long swab deep into the nose to get a sample. The obstacles to implementing such testing on a mass scale quickly became clear.

Among them: Many people were wary of the unpleasant procedure, called a nasopharyngeal swab. It can be performed only by trained health workers, putting them at risk of infection and adding costs. And the swabs and chemicals needed to test for the virus almost immediately were in short supply.

Some places, like Los Angeles County, of saliva and sputum, with the process supervised at drive-thru testing sites by trained personnel swathed in protective gear. Meanwhile, researchers began investigating other cheaper, simpler alternatives to the tried-and-true approach — including dribbling saliva into a test tube.

But the transition has not been immediate. Regulators and scientists are generally cautious about new, unproven technologies and have an understandable bias toward well-established protocols.

“Saliva is not a traditional diagnostic fluid,” said Yale microbiologist Anne Wyllie, part of a team whose saliva-based test, called SalivaDirect, received emergency use authorization from the Food and Drug Administration in August. “When we were hit by a virus that came out of nowhere, we had to respond with the tools that were available.”

Eight months into the pandemic, the move toward saliva screening is gaining traction, with tens of thousands of people across the country undergoing such testing daily. However, saliva tests still represented only a small percentage of the more than 900,000 tests conducted daily on average at the end of September.

Yale is providing its protocol on an open-source basis and recently designated  as capable of performing the test. Besides the Yale test, the FDA has authorized emergency use of several others, including versions developed at Rutgers University, the University of South Carolina and SUNY Upstate Medical University. A further advance,Ìý,Ìý be headed for FDA authorization, too.

Since the start of the pandemic, the Trump administration’s approach to testing has been hampered by missteps and controversy. As a key health agency during an unprecedented emergency, the FDA’s effectiveness relies on public trust in how it balances the need for speed in authorizing innovative products, like saliva tests and vaccines, with ensuring safety and effectiveness, said Ann Keller, an associate professor of health policy at the University of California-Berkeley.

“You obviously want to get new tests into the mix quickly in order to address the emergency, but you still need to uphold your standards,” Keller said. The White House’s public pressure on the FDA has complicated the agency’s efforts by undermining its credibility and independence, she said.

Respiratory viruses colonize areas inside the nasal cavity and at the back of the throat. Besides the nasopharyngeal approach, nasal samples obtained with shorter and less invasive swabs have proven effective for the coronavirus and have become widely adopted, although they also generally require a health care worker’s involvement. The millions of rapid tests that will be distributed across the country, per , rely on nasal swabs.

In the early months of the pandemic, some studies reported significant levels of the virus in oral secretions. In , for example, the virus was found in the saliva of 11 of 12 patients with confirmed coronavirus infection.

In Los Angeles, , more than 10,000 samples are collected per day, said Fred Turner, chief executive of Curative, the company that developed it.

Turner sees an advantage to the swabbing strategy. The self-swab procedure takes only 20 to 30 seconds, while producing enough saliva for testing can take people two to three minutes, and sometimes longer, he said. “That might not sound like much difference,” Turner said, “but it is when you’re trying to push 5,000 people through a test site.”

Curative’s three labs process tens of thousands of tests from jurisdictions across the country in addition to L.A., Turner said. A , which is expected to become available at state labs around New York, also uses an oral swab.

For the Curative test, a health care worker is supposed to oversee the sample collection —reminding people to cough to bring up fluids, for example. When investigators at the University of Illinois launched what they called a “Manhattan Project” to develop a saliva test by mid-June, they hoped to make it possible for people to visit a collection site, drool into a test tube, seal it and drop it off without the aid of a health care worker.

The university is now testing more than 10,000 people a day at its three campuses and is seeking to expand access to communities across the state and country, said chemistry professor Paul Hergenrother, who led the research team. Like the similar Yale test, it is being made freely available to other laboratories. The University of Notre Dame, in Indiana, recently adopted it.

Like tests using nasopharyngeal and other kinds of nasal swabs, these saliva tests are based on PCR technology, which amplifies small amounts of viral genetic material to facilitate detection. Both the Yale and University of Illinois tests have managed to simplify the process by eliminating a standard intermediate step: the extraction of viral RNA. Their protocols also don’t require viral transport media, or VTM — the chemicals generally used to stabilize the samples after collection.

“You don’t need swabs, you don’t need health care workers, you don’t need VTM, and you don’t need RNA isolation kits,” Hergenrother said.

In , the Yale team reported detecting more viral RNA in saliva specimens than in nasopharyngeal ones, with a higher proportion of the saliva tests showing positive results for up to 10 days after initial diagnosis.

The National Basketball Association provided $500,000 in support for the Yale project, said David Weiss, the NBA’s senior vice president for player matters. He said the Yale team’s decision to eliminate the process of RNA extraction, which separates the genetic material from other substances that could complicate detection, involved trade-offs but did not compromise the value of the test.

“Any molecular test that has an RNA extraction step is almost by definition going to be more sensitive, but it will also be more expensive and take longer and use supplies that are in shorter supply,” he said. “If we’re trying to look at surveillance testing to open up schools and nursing homes, a test that’s still very sensitive and a lot cheaper is an important innovation.”

Prices for coronavirus tests vary widely, running upward of $100. Tests based on the Yale or University of Illinois protocols, which require only inexpensive materials, could be available for as little as $10. The Curative testing service, which includes collection and transportation of samples as well as the laboratory component, averages around $150 per test depending on volume, said Clayton Kazan, chief medical director of the L.A. County Fire Department, which uses the tests.

Despite the advances in sample collection, tests using PCR — polymerase chain reaction — technology still require laboratory processing. Researchers have been investigating other approaches, including saliva-based antigen tests, that could be self-administered at home and would provide immediate results. (While PCR can detect coronavirus genetic material, antigen tests look for viral proteins that can signify a current infection.)

At least it is seeking emergency use authorization for a saliva antigen test, although two others have dropped plans to develop their own versions as infeasible, . Meanwhile, scientists at Columbia University, the University of Wisconsin and elsewhere are investigating the use of saliva with other kinds of rapid-test technologies.

“There’s tons of interest” in an at-home saliva test, noted Yvonne Maldonado, chief of pediatric infectious diseases at Stanford University School of Medicine.

“People really do want to get that pregnancy-type kit out there,” she said. “You could basically send people a little packet with little strips, and you pull off a strip every day and put in under your tongue.”

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Sex In The Time Of COVID: Gay Men Begin To Embrace A ‘New Normal’ /news/sex-in-the-time-of-covid-gay-men-begin-to-embrace-a-new-normal/ Fri, 24 Jul 2020 09:00:35 +0000 https://khn.org/?p=1119935&preview=true&preview_id=1119935 Dr. Jeffrey Klausner, a primary care physician in Los Angeles, has treated gay men for decades. Since the start of the coronavirus pandemic, he said, many patients have so dramatically changed their sexual behavior that they shrug off the need for routine screenings for sexually transmitted diseases.

“They say, ‘I haven’t had any contact since I saw you last, so there’s no need to do any STD tests,’” said Klausner, an adjunct professor of epidemiology and infectious diseases at UCLA.

But attitudes among these patients are shifting, Klausner has noticed, now that California and other states are loosening policies on social distancing. “People are starting to think about a return to engaging [in sex],” he said, “and are asking me, are there ways they can remain safe” from COVID-19?

Concerns about sexual intimacy during an epidemic are universal and not limited to gay men, of course. Public health experts, including those long involved in HIV prevention, recognize that a proportion of all people are likely to ignore or reject categorical mandates about sexual behavior — whether they involve using condoms or limiting contact because of social distancing norms.

“It didn’t work when we had to deal with HIV, and it won’t work in dealing with COVID,” said Pierre-Cédric Crouch, a clinical nurse researcher at the University of California-San Francisco, and an expert in HIV prevention.

The coronavirus is known to spread through oral and nasal secretions but not specifically through sexual intercourse. In New York City, the health department issued that counsel against sex with those outside your household but advise those who choose otherwise to “have as few partners as possible.”

The guidelines, which note that “kissing can easily pass the virus,” suggest that people “make it [sex] a little kinky” by being “creative with sexual positions and physical barriers, like walls, that allow sexual contact while preventing close face to face contact.” In the Netherlands, the government has advised single people considering sex to find a symptom-free sexual partner.

For many gay men, especially in urban areas, sexual exploration with multiple partners is a way of life, whether single or not. Many committed male couples maintain open relationships.

Research supports the notion that gay men tend to have more sexual partners than do heterosexuals. A 2012 among adults ages 18 to 39 noted that men who have sex with men (a phrase often used in scientific studies that focus on sexual behavior rather than sexual identity) “reported significantly more lifetime partners than heterosexual men and women at all ages.” In the 35-39 age group, the median lifetime number of sexual partners reported by men who have sex with men was 67, compared with 10 for heterosexuals, according to the study.

Damon Jacobs, a therapist with many gay clients, lives alone in Brooklyn and remained celibate for the first month of the lockdown. At that point, he said, he reached out to a regular and trusted sexual partner.

“He’d also been alone for four weeks except for going outside for groceries, and he also had zero symptoms,” said Jacobs, 49.

“So we got together and started hanging out again,” Jacobs added. More recently, he has met up with several other partners after asking about their social distancing practices. He has also found many of his clients dealing with similar issues after months of being on their own.

“Human beings can cope with certain levels of pain and suffering for a specific amount of time if they perceive an ending,” said Jacobs. After more than two months, he added, people who have been physically isolated are “starved for touch.”

A mid-April provided a snapshot of how the coronavirus had affected sexual behavior. While about half reported fewer sexual partners than before the pandemic, only 1% reported more, with 48% reporting no change. (The survey did not ask about the number of partners or whether sex was with a household member.)

Many gay men remain cautious. Lewis Nightingale, a retired graphic designer in San Francisco who lived in New York during the early years of the AIDS epidemic, said he had spent much more time using online apps such as Grindr and Scruff to flirt and sext with other men.

He has received, and turned down, occasional invitations to meet up in person, he said. As an older man, he knows he is in a higher risk group for coronavirus complications. But refraining has been challenging, he said, since expressing himself sexually has played such a big part in his life. “For a lot of gay men, sex is pretty essential for a feeling of connection, for excitement, for validation,” said Nightingale, who has been in a relationship for 16 years.

Last month, Eric, a 42-year-old male escort in Manhattan who asked that his last name not be used, began weighing when and how to return to work. A former occupational therapist whose husband is a physician, he shut down business in mid-March and finally started seeing clients again earlier this month.

For now, he plans to limit scheduled appointments. He intends to see only those he knows well enough to believe they are truthful about routinely wearing masks and being symptom-free. And he is meeting people at his home rather than in a hotel room or their place. “I figure if I have people coming here, I’m only exposed to that person’s germs,” he said.

Eric also plans for now to avoid clients who have attended recent protests against police brutality. “I support the protests 1,000%, but I think they are probably pretty good breeding ground for the virus,” he said. “I don’t want to take that risk.”

In advising his gay patients about sexual activity, Klausner, the Los Angeles physician, said he tries to put the risk in context. The majority of coronavirus cases, he noted, have emerged from workplace and residential settings, such as meatpacking plants and nursing homes, as well as big indoor gatherings, such as concerts and religious services. Although the virus can be transmitted one-to-one in more intimate contexts, he said, “individual risk is really driven by people’s potential exposure to these crowded settings.”

A common misperception — that actions can be clearly defined as risky or not risky — can hamper understanding of other people’s actions, said Julia Marcus, a Harvard epidemiologist and HIV prevention expert. As restrictions on social distancing relax, she said, almost everyone will be making choices and engaging in activities that involve some level of risk — yet will likely be judged by various standards.

“There are very few zero-risk situations,” she said. Unfortunately, she added, “the gay guys are going to be shamed for hooking up, while the straight people having dinner together are less likely to be shamed.”

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Hisopado bucal tomado por el paciente, próximo paso para detectar el coronavirus /news/muestras-de-hisopado-bucal-tomadas-por-el-paciente-proximo-paso-para-detectar-el-coronavirus/ Fri, 01 May 2020 12:48:54 +0000 https://khn.org/?p=1096816 Las pruebas para coronavirus suelen ser una experiencia desagradable e incluso dolorosa en la que un proveedor de atención médica empuja un hisopo por la nariz del paciente.

El presidente Donald Trump declaró que someterse al proceso fue .

Desde finales de marzo, tres jurisdicciones del sur de California, el condado de Los Ángeles y las ciudades de Los Ángeles y Long Beach, han ofrecido una alternativa más aceptable a este muestreo nasofaríngeo, cuyo nombre ya representa un desafío.

En 21 sitios de autoservicio, moviendo un hisopo de algodón alrededor de sus bocas, colocándolo en un tubo y dejándolo en una caja al salir, todo dentro de la comodidad de sus autos.

Algunos expertos sugieren que este enfoque de auto recolección puede proporcionar una forma más fácil de tener pruebas masivas en los Estados Unidos.

“Abogo firmemente por el hisopado oral”, dijo el doctor Clayton Kazan, director médico del Departamento de Bomberos del condado de Los Ángeles, que supervisa el programa de pruebas al paso del condado. “Puede o no ser inferior, dependiendo del estudio que leas, pero, logísticamente, no tiene comparación”.

Sin embargo, muchos funcionarios de salud pública se resisten a confiar en estas pruebas más simples a menos que los datos científicos muestren de manera convincente que funcionan tan bien como los métodos ya aceptados.

“Tengo verdaderas preocupaciones sobre las decisiones que se toman en base a estudios que no han sido revisados ​​por colegas”, dijo el doctor Richard Besser, CEO de la Fundación Robert Wood Johnson y ex director interino de los Centros para el Control y Prevención de Enfermedades (CDC).

“En medio de esta pandemia, no queremos comprometernos, especialmente si las personas van a usar esa información para decidir si van a seguir el distanciamiento social”, dijo el doctor Adam Jarrett, director médico del Holy Name Medical Center, en Teaneck, Nueva Jersey.

Las muestras nasofaríngeas han sido estándar durante mucho tiempo para diagnosticar la gripe y otras infecciones respiratorias porque se sabe que los patógenos colonizan la parte superior de la garganta detrás de la nariz.

Por el contrario, el método más simple que se usa en el condado de Los Ángeles, en el que se pide a los pacientes que tosan y luego se pasen un hisopo por dentro de las mejillas y la parte posterior de la boca, se basa en un conjunto limitado de investigaciones emergentes.

Actualmente, los CDC llaman a los hisopos nasofaríngeos la “opción preferida” para las pruebas de coronavirus. No recomiendan los fluidos orales recogidos por la persona misma, y el número de jurisdicciones que siguen esta estrategia sigue siendo limitado.

A principios de abril, el condado de Middlesex, en Nueva Jersey, también comenzó a ofrecer a personas sintomáticas pruebas al paso con muestras orales tomadas después de toser. El lunes 27 de abril, funcionarios de la ciudad de Nueva York dijeron que planeaban comenzar a ofrecer pruebas usando muestras orales y nasales recolectadas en hospitales públicos.

Los científicos y expertos en salud pública han promovido el aumento de las pruebas virales y la vigilancia como clave para cualquier estrategia para flexibilizar las restricciones sociales, y la necesidad de recolectar muestras nasofaríngeas por parte de profesionales con equipo de protección representa un obstáculo importante.

Por eso está aumentando el interés en el uso de muestras orales, así como de hisopados nasales que pueda recolectar la misma persona, dijo Lisa Barcellos, epidemióloga de la Universidad de California-Berkeley.

“Es imposible ampliar cualquier cosa que requiera que los profesionales de salud lo hagan, y con un equipo que es difícil de conseguir”, dijo Barcellos. El aumento en la demanda de los hisopos especializados de 6 pulgadas requeridos para el procedimiento nasofaríngeo ha llevado a una escasez crítica, agregó.

Los sitios de pruebas auto recolectadas del condado de Los Ángeles, Los Ángeles y Long Beach, diseñados para personas que experimentan síntomas, procesan colectivamente alrededor de 7,000 pruebas al día, con una tasa positiva de poco más del 7%, según Curative, la compañía de diagnóstico que proporciona las pruebas.

Curative está teniendo conversaciones con jurisdicciones en otras áreas y la semana del 27 de abril anunció un acuerdo para evaluar al personal de la Fuerza Aérea.

Kazan reconoció que la muestra nasofaríngea se considera el método más confiable, pero señaló que estudios recientes han reportado resultados prometedores de muestras orales.

Además, agregó, confiar en las llamadas técnicas auto administradas elimina el peligro para el personal de atención médica y minimiza la necesidad de equipos de protección personal escasos, como máscaras, protectores faciales y delantales.

Kazan dijo que las personas que reciben las pruebas se sienten aliviadas al saber que recolectar secreciones de sus bocas es relativamente rápido y fácil.

“Creo que mucha gente imagina lo que vieron en YouTube, personas con equipo de protección que parecen astronautas colocando largos hisopos en sus narices”, dijo.

Pero para ser útiles, las pruebas de diagnóstico deben ser precisas. Un “falso negativo”, en el cual la prueba no puede detectar el coronavirus, podría hacer que una persona infectada piense que está a salvo y que no representa ningún peligro para los demás.

El 21 de abril, la (FDA) otorgó su primera autorización para una prueba casera de hisopo nasal hecha por LabCorp. La agencia había emitido previamente sobre los kits de prueba caseros de coronavirus “fraudulentos” que se comercializan por internet.

La investigación emergente también ha investigado las pruebas de fluidos orales, como las que se realizan en el condado de Los Angeles, con los individuos generalmente tosiendo para expectorar la saliva rica en virus antes de frotarse la boca o escupir en un recipiente.

Un con 65 pacientes en China informó que la tasa de detección del nuevo coronavirus fue mayor en la saliva que en otras muestras respiratorias. han encontrado que las pruebas de fluidos orales no son tan precisas cuando a las personas no se les recuerda toser de antemano.

Carey-Ann Burnham, directora médica de microbiología del Hospital Barnes-Jewish de St. Louis, dijo que la investigación inicial sobre fluidos orales parece “notablemente prometedora”.

Pero “un hisopo nasofaríngeo es una técnica de muestreo estandarizada que se ha hecho durante décadas”, agregó Burnham, quien también es profesor de inmunología y patología en la Facultad de Medicina de la Universidad de Washington. “Saliva, secreciones orales: no son formas estándar en que hemos buscado virus respiratorios, y en este momento todos lo hacen de manera un poco diferente”.

Eso hace que sea más difícil comparar estudios y resultados, dijo.

La autorización de la FDA para la recomienda que el proceso de auto recolección sea “observado por un trabajador de salud capacitado”. Kazan, el director médico del departamento de bomberos, dijo que el personal capacitado lo hace. Si bien reconoce las limitaciones de los primeros datos, Kazan insiste en que las necesidades del momento son primordiales.

“Este es el espacio entre las personas inteligentes que leen literatura médica y aquéllos como nosotros que tenemos la tarea de poner en práctica estas recomendaciones”, dijo.

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Do-It-Yourself Cheek Swab Tested As Next Best Thing To Detect Coronavirus /news/do-it-yourself-cheek-swab-tested-as-next-best-thing-to-detect-coronavirus/ Fri, 01 May 2020 09:00:18 +0000 https://khn.org/?p=1095393&preview=true&preview_id=1095393 Coronavirus testing is commonly an unpleasant, even painful experience in which a health care provider pushes a torturously long swab up your nostril. President Donald Trump declared that submitting to the process was

Since late March, three Southern California jurisdictions ― Los Angeles County, and the cities of L.A. and Long Beach ― have offered a more palatable alternative to this nasopharyngeal sampling, whose very name poses a challenge. At 21 drive-thru sites, by swishing a cotton swab around their mouths, putting it in a tube and dropping it in a receptacle on their way out — all within the comfort of their cars. Some experts suggest this self-sampling approach may provide an easier way to ramp up massive testing in the U.S.

“I strongly advocate for the oral self-swab,” said Dr. Clayton Kazan, medical director for the L.A. County Fire Department, which is overseeing the county’s drive-thru testing program. “It may or may not be inferior, depending on the study you read, but, logistically, there is no comparison.”

But many public health officials balk at relying on the simpler tests unless scientific data convincingly shows they work as well as the accepted methods.

“I have real concerns about decisions that are made based on studies that have not been peer-reviewed,” said Dr. Richard Besser, CEO of the Robert Wood Johnson Foundation and former acting head of the Centers for Disease Control and Prevention.

“In the middle of this pandemic, we don’t want to compromise, especially if people are going to use that information to decide if they’re going to follow social distancing,” said Dr. Adam Jarrett, chief medical officer at Holy Name Medical Center in Teaneck, New Jersey.

Nasopharyngeal samples have long been standard for diagnosing influenza and other respiratory infections because the pathogens are known to colonize the upper part of the throat behind the nose. In contrast, the simpler method being used in L.A. County — in which patients are asked to cough and then swab their cheeks and the back of their mouths — is based on a limited body of emerging research.

The CDC currently calls nasopharyngeal swabs the “preferred choice” for coronavirus testing. It doesn’t recommend self-collected oral fluids, and the number of jurisdictions pursuing this strategy remains limited.

In early April, Middlesex County, New Jersey, also began to offer symptomatic individuals drive-thru tests using oral samples produced after a cough. On Monday, officials in New York City said they planned to begin offering testing using self-collected oral and nasal samples at public hospitals.

Scientists and public health experts have promoted increased viral testing and surveillance as key to any strategy for safely loosening societal restrictions — and the need to collect nasopharyngeal samples by professionals dressed in protective gear represents a major obstacle. That’s why interest is rising in the use of oral samples as well as nasal swabs that can be self-administered, said Lisa Barcellos, an epidemiologist at the University of California-Berkeley.

“It’s impossible to scale up anything that requires health professionals to do it, and with equipment that’s hard to get,” Barcellos said. The surge in demand for the specialized 6-inch swabs required for the nasopharyngeal procedure has led to critical shortages, she added.

The L.A. County, Los Angeles and Long Beach drive-thru sites — designed for people experiencing symptoms — collectively process about 7,000 oral swab tests a day, with a positive rate of just over 7%, according to Curative, the diagnostics company that provides the tests. Curative is holding discussions with jurisdictions in other areas and last week announced an agreement to test Air Force personnel.

Kazan acknowledged that nasopharyngeal sampling is considered the most trustworthy method but noted recent studies have reported promising results from oral samples. Moreover, he said, relying on self-administered techniques eliminates the danger to health care personnel and minimizes the need for personal protective equipment in short supply, like masks, face shields and protective suits.

Kazan said people who receive the tests are relieved to find that collecting secretions from their mouths is relatively quick and easy.

“I think that a lot of folks envision what they saw on YouTube, people in PPE that look like astronauts putting swabs way up people’s noses,” he said.

But to be useful, diagnostic tests must be accurate. A “false negative,” in which the test fails to detect the coronavirus, could lead someone who is infected to think they are safe and pose no danger to others.

Since the pandemic began, a growing body of research — some of which has not yet undergone peer review — has compared how accurately different sampling techniques detect the virus. “Everybody’s looking for better ways to do this,” said Barcellos, who is involved in a major study of the prevalence of coronavirus infection in the East Bay region.

Both oral and nasal samples can be obtained in more and less invasive ways. Oropharyngeal swabs require the instrument to be inserted down the throat; like nasopharyngeal swabs, they are supposed to be performed by a trained provider because the procedure can be uncomfortable and tends to produce a gag reflex.

And swabs of secretions gathered from just inside the nostril can be self-administered, unlike the nasopharyngeal swabs. A Seattle study of hundreds of coronavirus patients found that self-collected samples were almost as accurate as nasopharyngeal swabs in identifying viral infections. In March, Seattle public health agencies launched a home-testing surveillance project using the nasal self-swab, with local residents registering online.

On April 21, for a nasal self-swab home test, made by LabCorp. The agency had about “fraudulent” coronavirus home test kits being marketed online.

The emerging research has also investigated oral fluid tests, like those being conducted in L.A. County, with subjects generally required to cough in order to bring up virus-rich saliva before they swab their mouth or spit into a container. A of 65 patients in China reported that the detection rate of the novel coronavirus was higher in saliva than in other respiratory samples. have found that oral fluid tests aren’t as accurate when people are not reminded to cough beforehand.

Carey-Ann Burnham, medical director of microbiology at Barnes-Jewish Hospital in St. Louis, said the early research on oral fluids looks “remarkably promising.”

But “a nasopharyngeal swab is a standardized sampling technique that’s been done for decades,” said Burnham, who is also a professor of immunology and pathology at Washington University School of Medicine. “Saliva, oral secretions — that’s not a standard way we’ve looked for respiratory viruses, and right now everyone’s doing it a little bit differently.”

That makes it harder to compare studies and results, she said.

The recommends that the self-collection process be “observed by a trained healthcare worker.” Kazan, the fire department medical director, said that trained staffers observe the oral self-swabbing. While acknowledging the limitations of the early data, Kazan insists that the needs of the moment are paramount.

“This is the space between smart people reading medical literature and those of us who are tasked with operationalizing these recommendations,” he said.

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New Protocol For HIV Prevention Drug Reduces The Number Of Pills Required /news/new-protocol-for-hiv-prevention-drug-reduces-the-number-of-pills-required/ Mon, 29 Jul 2019 09:00:38 +0000 https://khn.org/?p=977536&preview=true&preview_id=977536 Health officials and AIDS advocates in San Francisco hope to expand the use of an effective HIV prevention drug with a new approach that requires fewer pills than the standard once-a-day regimen.

San Francisco’s public health department and the San Francisco AIDS Foundation have long promoted what is known as preexposure prophylaxis, or PrEP, for those at high risk of contracting HIV. With regular PrEP, the daily pill is taken indefinitely. But both organizations now endorse a strategy that requires taking just four pills timed to a specific sexual encounter — two within two to 24 hours before sex and one on each of the two following days.

They believe this approach will make PrEP more palatable to people who are ambivalent about the medication because of the cost, fear of potential side effects, mistrust of pharmaceutical companies or a general dislike of taking drugs.

The new strategy, called “2-1-1” or “on-demand” PrEP, is becoming popular overseas but has gotten little traction in the United States thus far. It has been proven effective only among men who have sex with men and is currently not recommended for women.

Proponents say the approach can work well for men whose encounters are intermittent and predictable: people in long-distance relationships who know when they will be with their partners, for example, or individuals who occasionally go out to pursue sexual activity.

The approach is not suitable for those who cannot plan for sex at least two hours in advance.

“There are people who really object to taking a pill every day if they’re not having sex that frequently,” said Dr. Oliver Bacon, a deputy director and physician at the San Francisco Department of Public Health. The on-demand approach, he added, “extends PrEP to people who actually need it based on the sex they’re having but wouldn’t take a daily pill.”

Since the Food and Drug Administration approved daily PrEP use for HIV prevention in 2012, more than 200,000 people in the U.S., most of them men who have sex with men, have taken the drug. But people are at risk for HIV infection and could benefit from the treatment, according to the Centers for Disease Control and Prevention.

The list price of the PrEP drug, sold by Gilead Sciences under the brand name Truvada, is when taken daily — though patients generally do not pay that much out of their own pockets.

Insurers typically cover much or most of the cost, but many have been onto patients in recent years. Help may be on the way, however.

Following a recommendation by the U.S. Preventive Services Task Force that doctors offer PrEP to at-risk patients, most health plans will be — though not the clinical and lab services that accompany its use.

And Gilead agreed earlier this year to enough Truvada to cover 200,000 patients annually for up to 11 years, though critics argue that cutting the price would be a more effective way to increase access.

Gilead declined to comment on the on-demand approach for using the drug.

Don Kirchman, a self-employed building developer in San Francisco who is on Medicare, started the on-demand regimen last year after discussing it with his doctor. He had previously taken Truvada daily, but then experienced heart trouble and a related drop in sexual interest and activity.

The new approach meets his current needs, because he prefers not to take unnecessary medication and is concerned about his out-of-pocket drug costs, he said. “There are times when I don’t feel like I’m in a sex cycle or I have a health issue that I’m concentrating on, so I’m not putting my attentions towards dating or hooking up,” Kirchman said.

In San Francisco, the health department issued an HIV update in February for local providers, suggesting they “consider” on-demand PrEP for men who were “ambivalent” about taking a pill every day. The department’s City Clinic began offering the option as a second-best choice for those reluctant to adopt the standard PrEP method.

In March, the San Francisco AIDS Foundation began formally enrolling men for on-demand PrEP at its Strut clinic in the city’s Castro district. In contrast to the health department, the foundation has presented on-demand and daily strategies as equal options. In the first two months, about a fifth of those who got PrEP at the clinic chose to take it on demand.

Since 2015, has found on-demand PrEP to be effective at preventing HIV. Advocacy groups and health agencies in France, Netherlands, Australia and elsewhere have promoted it. The World Health Organization this week during an international AIDS conference in Mexico City.

So far, neither the CDC nor the FDA has endorsed the on-demand approach. But Bacon, of the San Francisco public health department, said the city’s experience is being closely watched and he has fielded questions about the initiative from health officials in New York, Seattle and elsewhere.

A big challenge public health officials face with PrEP is that its adoption has been among men of color than among whites. African Americans and Latinos are more likely to have undiagnosed or untreated HIV, so boosting awareness and use of PrEP is viewed as a key strategy for preventing infections.

Chicago physician John Schneider said the African-American gay and bisexual men he sees at a South Side clinic tend to distrust the health care establishment, including drug companies, because of a legacy of medical discrimination. “Patients don’t like taking a lot of pharmaceutical products,” he said.

Though Schneider generally recommends the standard once-a-day PrEP regimen, he said he sometimes suggests the on-demand approach for patients whose sexual behavior is compatible with it, if they struggle with taking a pill every day.

Some people who want PrEP but prefer to minimize their consumption of it have adopted a different non-daily strategy: a four-day-a-week approach known in the United Kingdom as the “T’s and S’s,” in which pills are taken on Tuesdays, Thursdays, Saturdays and Sundays.

Earlier found that four pills a week conferred a high level of protection.

Timothy Price, an HIV prevention coordinator at the Northeast Indiana Positive Resource Connection, a Fort Wayne HIV/AIDS services organization, said he had relied on the T’s and S’s to limit his consumption of Truvada after a dispute with his insurance company involving prescription refills.

Price, a 56-year-old gay man, said he understood the science and knew he could safely reduce his intake to make his pills last longer. “I had a long period of time when they refused to fill it, so I decided after that I needed to build up some kind of cushion,” he said.

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For Those With Developmental Disabilities, Dental Needs Are Great, Good Care Elusive /news/for-those-with-developmental-disabilities-dental-needs-are-great-good-care-elusive/ Fri, 03 May 2019 09:00:32 +0000 https://khn.org?p=941840&preview=true&preview_id=941840 When Ava Terranove began feeling oral pain last July, her parents took her to her regular dentist. The dentist determined that Ava, who has an autism-like condition, needed two root canal procedures to treat infected teeth.

Because of her developmental disability, Ava, now 15, requires general anesthesia for non-routine dental work. The dentist, like most of his peers, was not equipped to provide it.

The girl’s parents, schoolteachers who live in Huntington Beach, Calif., called other dental offices in the region. They were turned down dozens of times before finally finding a dentist prepared to work with an anesthesiologist to treat their daughter.

But there was a hitch: Insurance would not cover general anesthesia for root canals. So Ava’s parents decided to pay the $2,400 from their savings to ensure their daughter received prompt care.

“What about kids who don’t have parents who are professionals or who have no one to advocate for them?” wondered Donny Terranove, Ava’s father.

People with autism, cerebral palsy and other developmental disorders face enormous barriers to adequate and timely dental care — on top of their other challenges. Many dentists either avoid treating these patients or lack the skills needed to do so. Some patients with developmental disabilities are unable to endure even regular dental exams or cleanings without general anesthesia.

But most dentists don’t offer it and getting insurance to cover it for routine dental work is often a struggle.

Because it is difficult for them to get treatment, people with developmental disorders suffer “a high burden of dental disease,” according to a of over 4,700 patients published in the Journal of the American Dental Association. One-third of the patients studied suffered from untreated cavities, and 80% from serious gum infections.

“Many individuals with developmental disabilities cannot personally maintain their own dental hygiene,” according to by the California Legislative Analyst’s Office (LAO). “Often they need extra appointments or special accommodations that dentists are unable or unwilling to provide.”

In many cases, patients need these extra appointments to help them get accustomed to the environment of a dental office, including the equipment, procedures and personnel. This can help minimize their anxiety and reduce the need for deep sedation or general anesthesia.

But sometimes there is no alternative to anesthesia.

Mike Loughran, 54, of Tacoma, Wash., has a 14-year-old son with Down syndrome and autism. After years of failed attempts to complete a basic checkup, Loughran and a willing dentist concluded that the child should have general anesthesia for any and all dental work. That led to hefty charges.

For one routine, 45-minute exam that uncovered no problems, the anesthesia bill was $1,155. Loughran’s insurer, Tricare, adjusted it down to $912 — a sum he described as “very reasonable.” But the hospital charged nearly $21,000 for the operating suite. Tricare agreed to coverage and negotiated the price down to about $15,000. That left Loughran with a $2,500 out-of-pocket copayment. He later got the state’s Medicaid program to cover most of that amount as his son’s secondary insurer.

Still, Loughran was taken aback by the astronomical amount charged for his son’s care. “The whole idea of it costing that much to get a dental exam, and you’re supposed to do that a couple of times a year — it was just stunning when I got the bill,” he said. “I don’t think I would take him to the operating room anymore.”

Without access to regular cleanings and other preventive care, “you get to the point that you need anesthesia because you’ve had a little problem that’s gotten big,” said Eileen Crumm, executive director of Family Resource Navigators, an advocacy group in Alameda County.

To accommodate the many patients who do need general anesthesia, some hospitals and regional centers for the disabled allocate a limited amount of surgical time for dental care. But because of the strong demand for these services, it can take many months or even more than a year to reserve an available operating slot, patient advocates say.

Like the Terranoves, Mariana Murillo had trouble finding appropriate care a few years ago for son Oscar, 20, who has cerebral palsy and cannot communicate verbally. Oscar, a teenager at the time, was in pain from impacted wisdom teeth, and his regular dentist said an oral surgeon would have to extract them. But Murillo, who lives in Lompoc, Calif., had difficulty finding one who would accept Denti-Cal, the state’s Medicaid-funded dental coverage for low-income people.

Murillo ended up paying $1,600 out-of-pocket to an oral surgeon. The surgeon agreed to extract Oscar’s four wisdom teeth while the boy was already under general anesthesia for the removal of a benign growth on his tongue — a procedure covered by Oscar’s medical insurance.

“Our financial situation is not great, but it was not too bad,” said Murillo. “Knowing Oscar was going to be free of that pain, we decided to do it.”

In some states, officials and private-sector organizations are trying to address this large unmet need among patients who may suffer in silence, unable to articulate their distress.

New Mexico, for example, has a that entitles dentists who have completed a special training program to an extra fee of $90 each time they treat a patient with developmental disabilities. And New York University’s College of Dentistry recently opened a strictly for the care of people with disabilities.

In California, most patients with developmental disabilities are eligible for care under Denti-Cal, but only a fifth of dentists in the state accept it. And only a fifth of developmentally disabled patients with Denti-Cal received even one dental service in 2014, 2015 or 2016, according to the LAO report.

Last year, to increase payments to Denti-Cal providers for the 2018-19 fiscal year — up $70 million from the amount of tobacco tax money it had earmarked for that purpose the previous year. Federal matching dollars bring the total amount of new money for the program to as much as $600 million. The most recent boost will help pay for the additional time needed to treat patients with special needs, as well as for anesthesia.

A particularly difficult challenge for patients with developmental disabilities is the transition from pediatric to general dentists as they age, said Dr. Joseph Castellano, president of the American Academy of Pediatric Dentistry, who practices in Laredo, Texas. That’s because pediatric specialists generally receive some training in working with that population, whereas general dentists tend to have little or no such experience.

“A lot of times [patients] will just stay in the [pediatric] practice,” Castellano said. “We know the patients and are comfortable with them, and they and the families are comfortable with us.”

Dr. Wade Banner, a Southern California dentist, took the matter into his own hands in 2014, when he launched a mobile dental program and began making house calls to patients with developmental disabilities. Banner, who has a nephew with autism, said he wanted patients to receive basic care in an environment where they felt most comfortable and were less likely to require major sedation.

Noting the paucity of providers for patients who need general anesthesia, Banner said, “one of my main goals in starting house-call dentistry was to prevent them from having to be put to sleep, if at all possible.”

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Patient Advocacy Or Political Ploy? Union, Industry Square Off Over Dialysis Initiative /news/patient-advocacy-or-political-ploy-union-industry-square-off-over-dialysis-initiative/ Fri, 05 Oct 2018 09:00:41 +0000 https://khn.org?p=878819&preview=true&preview_id=878819 This year, California dialysis clinics — and their profits — are in a powerful union’s crosshairs.

On Nov. 6, the Service Employees International Union-United Healthcare Workers West union hopes to deliver a stinging blow with a ballot measure designed to limit clinic profits.

Proposition 8, or the “Fair Pricing for Dialysis Act,” would cap dialysis clinic profits at 115 percent of the costs of patient care, with revenue above that amount to be rebated primarily to insurers. Medicare and other government programs, which pay significantly lower prices for dialysis, would not receive rebates.

It’s been a costly campaign, suggesting high stakes for both sides. The union, which sponsored the initiative and represents and other health care workers in California, so far has invested nearly $17 million in the effort.

Two leading national for-profit dialysis companies, DaVita and Fresenius Medical Care, dominate California’s market and are fighting back hard, contributing more than $40 million and $22 million respectively to defeat the measure. Overall, dialysis companies have raised more than $72 million to oppose the initiative.

In California, close to 70,000 patients need regular dialysis, which essentially performs the function of kidneys for patients whose own kidneys are failing. DaVita and Fresenius control 70 percent of the nation’s market. Between them, they reported more than $4 billion in operating profits last year.

Proponents say the initiative would spur clinics to reduce executive salaries, increase investment in patient care and lower the prices for patients with private insurance.

“It will allow these companies to make good profits, but not the obscene profits they make now,” said Steve Trossman, a spokesman for the union and the “Yes on 8” campaign.

Opponents argue the issue is too complicated to be decided at the polls and that it could reduce patients’ access to care, causing the vast majority of clinics to lose money and forcing many to shut down.

Fresenius and Davita referred questions on the initiative to the “No” campaign. But in an , DaVita CEO Kent Thiry said the passage of the initiative in California would have mostly “unsustainable” effects on dialysis centers.

A win for the union, known as SEIU-UHW, could encourage similar efforts elsewhere, said Laurel Lucia, director of the health care program at the Center for Labor Research and Education at the University of California-Berkeley.

“The initiative addresses a national problem,” she said. “If the policy is implemented successfully here, it wouldn’t be surprising if it spread to other states.”

Similar measures pushed by the union in Ohio and Arizona did not make the ballots for this November’s election.

The initiative is part of the union’s wide-ranging campaign to force changes in the dialysis industry. In August, California legislators approved a bill promoted by the union that would have effectively capped reimbursement rates for dialysis clinics. While that was perceived as a solid victory for SEIU-UHW, Democratic Gov. Jerry Brown vetoed the measure last month.

A few years ago, SEIU-UHW began organizing among dialysis clinic workers, raising concerns about poor sanitation, high infection rates, understaffing, exorbitant prices for those covered by private insurance and other problems. The union ramped up its efforts on the ballot measure after legislative attempts to address some of the issues stalled last year.

Since 2012, the union has spent tens of millions of dollars on multiple state and local ballot initiatives in California relating to a wide range of health care issues, including access to affordable insurance, hospital and clinic funding, and training for in-home supportive services.

In 2013, for instance, SEIU-UHW launched ballot measures in California targeting hospital pricing and executive pay, and opponents accused the union of abusing the ballot process to force compliance with its demands.

According to Thad Kousser, a professor at the University of California-San Diego and an expert in the legislative process, the strategy of using ballot measures for political leverage is standard practice and not unique to SEIU-UHW. Even if the dialysis initiative is defeated, Kousser said, the effort will likely provide the union with a bargaining edge in future negotiations.

“It strengthens the union’s hand for future bargaining, even if it doesn’t win now,” Kousser said.

The union says it uses ballot measures to improve health conditions for all state residents, not just its members. “We made a decision as a union a number of years ago that in order to be successful, we couldn’t just be worried about our own members and our own narrow interests and have blinders,” Trossman said.

Nonsense, say critics.

“The spin from the SEIU-UHW is that the union is crusading for a healthier California, not trying yet again to get leverage over health-care employers,” declared an last year in the San Diego Union-Tribune. “Californians with failing kidneys have enough worries. They should not be political pawns.”

The “No on 8” campaign, citing findings from the Centers for Medicare & Medicaid Services, notes that California’s clinics rate higher than those in other states on quality-of-care measures, such as avoiding unnecessary transfusions, preventing infections and maintaining proper blood levels of calcium levels.

“The ‘Yes on 8’ people talk about a crisis in dialysis and that’s not even close to being the truth,” said Kathy Fairbanks, spokeswoman for the “No” campaign.

But other research, such as a 2014 study of Medicare beneficiaries nationwide, found that patients treated at for-profit clinics had higher hospitalization rates than those in not-for-profit centers.

In June, found DaVita liable for the deaths of three patients who suffered cardiac arrests following dialysis treatment, ordering the company to pay almost $400 million in damages. Witnesses had accused DaVita of failing to provide sufficient warning to doctors about the possible risks of a medication commonly used during dialysis. The company said at the time it would appeal. In 2016, Fresenius agreed to pay  to resolve thousands of lawsuits involving the same medication.

In the heated battle over next month’s ballot measure, both sides have lined up many dozens of endorsements from community and statewide organizations. Proponents have strong labor and Democratic Party support. The California Medical Association, and some other medical groups, along with many veterans’ and business organizations, back the “No” campaign, arguing that the change would put dialysis patients at risk.

The “No” campaign has spent millions on as the election nears. The “Yes” campaign has also launched an aggressive ad campaign.

Not all dialysis patients support the bill. Dialysis patient DeWayne Cox, a 55-year-old independent filmmaker and Uber driver in Sherman Oaks, said his opposition goes against his natural inclination to support labor. But he fears the mandated changes would force clinics to close and make it harder for patients like him to get dialysis.

“The thing is, I come from a union family, I believe in unions, but in this case I question their [SEIU-UHW’s] motives,” Cox said.

This story was produced by , which publishes , an editorially independent service of the .

ºÚÁϳԹÏÍø News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about .

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This story can be republished for free (details).

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