Corrección: El nombre de la organización es Compassion & Choices. Una versión anterior de esta historia nombró la organización incorrectamente en idioma español. (3:30 p.m. MST. Abril 15, 2022)


Este sábado es el Día Nacional de Decisiones de Salud. Es un recordatorio de que todos deben tener planes en caso de que necesiten atención médica y no puedan manifestar sus deseos.

Un grupo conocido como Compassion & Choices aboga por la ayuda médica para morir, para personas con enfermedades terminales. Kim Callinan es la presidenta y directora ejecutiva del grupo. Ella dice que tener Directivas Anticipadas para Fin de Vida no solo es importante para la persona, sino también para su familia.

"Uno de cada dos adultos mayores ahora muere con o a causa de la demencia y, desafortunadamente, la mayoría no esta planeando cómo será el final. Y sin planificación, estás dejando a tus seres queridos y cuidadores teniendo que tomar decisiones desgarradoras sobre la atención que recibes o no recibes al final de la vida," añadió Callinan.

Agrega que existe una necesidad aún mayor en la comunidad latina, que según las investigaciones es el grupo con menos probabilidades de completar las instrucciones médicas anticipadas. Compassion & Choices tiene una Guía de decisiones para el final de la vida tanto en español como en inglés.

Texas se encuentra entre los 10 estados con más muertes por Alzheimer, y de los aproximadamente 6,2 millones de estadounidenses mayores de 65 años con enfermedad de Alzheimer, más de la mitad son mujeres. Las mujeres también son más propensas a tener otras formas de demencia.

Callinan argumenta que los avances en la medicina han prolongado la vida de muchas personas, pero en algunos casos, esto también puede conducir a años de sufrimiento.

"Con la planificación, puede interrumpir el sistema y tener un final mucho más compasivo. Sin planificación, está sujeto a un sistema de atención médica que se centrará en prolongar la vida, lo que, en el caso de alguien con demencia avanzada, a menudo prolonga el sufrimiento," mencionó también Callinan.

Callinan reconoce que no es fácil tener estas conversaciones con los seres queridos, pero dice que hay recursos disponibles para ayudar.

"Para el Día Nacional de las Decisiones de Atención Médica, alentaría a todos a tener conversaciones con sus seres queridos sobre la atención que desearían al final de la vida. Y, en particular, use nuestra Herramienta de Valores y Prioridades de Demencia, para que pueda documentar sus preferencias de atención para salvaguardar su futuro," aconsejó Callinan.

En Texas, más de 1 millón de familiares y amigos brindan atención no remunerada a personas con demencia, dedicando casi 2,000 millones de horas al año, atención que de otro modo le costaría al estado más de 25,000 millones de dólares.

Consumer advocates in Maine said the availability of enhanced subsidies have helped record numbers of people get the health care coverage they need.

Nearly 65,000 Mainers enrolled in health plans this year through the state's online marketplace.

Rachel Collamore, consumer assistance program manager at Augusta-based Consumers for Affordable Health Care, said more people are catching problems early and avoiding trips to the emergency room.

"It means that people who might otherwise kind of roll the dice don't have to anymore," Collamore emphasized. "They can get that security by having a health plan that is more likely to meet their budget and more likely to meet their health care needs."

Enhanced subsidies have cut some premiums, on average, by more than 40%.

Collamore noted open enrollment is closed until November but people can still get coverage if they experience certain "qualifying life events" like getting married or losing an employer-based plan.

The enhanced subsidies will expire at the end of the year unless Congress votes to extend them or make them permanent. Without action, the vast majority of marketplace premium payments will increase, and low-income enrollees will face the biggest premium hikes.

Collamore argued it should concern everyone because "healthy neighbors make good neighbors."

"We know that having access to medications that help you manage chronic conditions," Collamore pointed out. "Even just having access to affordable prenatal care; that those are really, really important and that kind of coverage is really out of reach for some many people if they don't have those tax credits."

Collamore added there are a lot of unknowns, but the Consumers for Affordable Health Care hotline is available for Mainers with questions about their coverage. She encouraged people to contact their elected officials to let them know the importance of keeping the enhanced subsidies in place.

February is American Heart Month and some Minnesota families are sharing their experiences with a sometimes overlooked disease among newborns: congenital heart defects.

Studies show congenital heart defects are the most common birth defect in the U.S., affecting nearly 40,000 babies each year. The American Heart Association said thanks to progress in the world of research and treatments, outcomes have improved. But families still find themselves in delicate situations.

Stephanie Johnson is a Minnesota mother whose son Henry was born with a syndrome restricting oxygen supplies to the body. Henry endured several surgeries and now lives a mostly normal life like kids his age but the worry is not over.

"We also know that the honeymoon period doesn't last forever," Johnson acknowledged. "At some point his heart's gonna get tired and he'll be looking at likely a heart transplant at that point."

Johnson hopes for additional medical breakthroughs but she and health experts noted congenital heart defect research is grossly underfunded. Another complication is government spending cuts sought by the Trump administration and the potential impact on agencies such as the National Institutes of Health. Policy experts say the research arm has already been dealing with flat funding levels.

In the absence of government support, current research heavily relies on awareness campaigns involving families navigating health scares. Johnson is among those trying to get the issue on the public's radar.

"We need to move science forward," Johnson urged. "Creating awareness for this is just incredibly important because awareness leads to funding, and funding leads to hope, and we're hoping for a cure."

Studies indicate congenital heart defects are underdiagnosed because milder symptoms are not always caught at birth. It means the disease is detected later in childhood or when the person becomes an adult.

Minnesota's Mayo Clinic and its HeartWorks program, as well as the Heart Association, are part of a network of health entities pushing for research advancements.

For Pennsylvanians with disabilities, there may be unexpected side effects to ending so-called Diversity, Equity, Inclusion, and Accessibility policies.

President Donald Trump has opted to eliminate DEIA initiatives in federal agencies and federally funded programs.

His executive order signed in January characterizes DEIA policies as "discriminatory."

But in Pennsylvania, Mallory Hudson - the director of the disability justice program at the Keystone Progress Education Fund - said a memo went out ordering the Justice Department's Civil Rights Division to not file any new complaints, motions to intervene, agreed upon remands, amicus briefs, or statements of interest.

"That means that the Department of Justice Civil Rights Division has been instructed not to file any new civil rights cases, right?" said Hudson. "And that includes ADA complaints. So, those are - that is one of the few ways that disabled people can even protect their civil rights."

She adds the Americans with Disabilities Act was first passed in 1990 under President George H.W. Bush, and its legal precedent was based on the Civil Rights Act of 1964.

Hudson said another potential concern is the future of the Inflation Reduction Act under the new administration.

She noted that the IRA has allowed the Centers for Medicare and Medicaid Services to negotiate drug prices - and many are benefiting from its progress, like a $35 co-pay for insulin.

"Older adults and some folks with disabilities have been able to do that $35 copay, and for folks on disability, that's still a pretty big chunk of change," said Hudson. "But it was better than before - and then, that meant taxpayers were paying the difference."

Lower prices have been negotiated for 10 medications so far, cutting costs for patients and saving taxpayers billions.

It's estimated that if the IRA had been enacted in 2023, it would have slashed prescription drug spending by 22% - or roughly $6 billion.