Insurers Battle Families Over Costly Drug for Fatal Disease

Nolan and Jack Willis, twins from upstate New York, and just 10 other boys took part in a clinical trial that led to the approval last fall of the very first drug to treat their rare, deadly muscle disease.

Now the Willis boys are again test cases as a different type of medical question comes to the fore: whether insurers will cover the controversial drug, Exondys 51, which can cost more than $1 million a year even though it’s still unclear if it works.

The boys’ insurer, Excellus BlueCross BlueShield, refused to cover the cost of the drug because the twins, who are 15, can no longer walk. Their disease, Duchenne muscular dystrophy, overwhelmingly affects boys and causes muscles to deteriorate, killing many of them by the end of their 20s.

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Don't take away the Medicaid lifeline that protects our children's health coverage

COLUMBUS, Ohio -- As a pediatrician in training, I know firsthand the importance of ensuring children have access to affordable, comprehensive health care coverage. I stand with the American Academy of Pediatrics in urging the Senate to forge a new path forward to protect children's coverage.

Children are our future, and if we desire to raise the healthiest and most productive Americans that we can, we must ensure that children have their health care needs met.

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The littlest lobbyist: a 6-year-old, whose life depends on ACA, heads to Capitol Hill

Timmy Morrison arrived at the United States Capitol on Tuesday morning with a big grin, a bright orange shirt, Velcro-strap shoes, and a vague understanding of what senators do.

The 6-year-old boy was on the Hill to do what hundreds of other people were there to do (though usually not in Velcro): lobby Congress.

Over the course of a taxing day, Timmy and his mother snapped photos with senators and scored an elusive meeting with the office of a crucial Republican swing vote on the pending bill to repeal and replace the Affordable Care Act. But their time on the Hill would prove vexing — they found it was difficult to lobby on a health care bill that they expect to affect them massively, but also haven’t seen.

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Cerebral Palsy Didn’t Stop This College Junior. Obamacare Repeal Might.

HILLIARD, Ohio ― Justin Martin, 21, is in many respects a typical junior at Kenyon College. He lives in an off-campus apartment, which he shares with six other guys. He’s majoring in English, helps run a student improv group, and last semester he took five courses instead of the usual four ― a “terrible idea,” he now concedes. Sometimes he pulls all-nighters to write papers or study for exams, drawing sustenance from soda and chocolate-covered almonds. And sometimes he stays up late just to have long arguments with his roommates ― like over whether it’s OK to ban campus speeches by white supremacists (Martin says no) or whether the seventh Harry Potter novel was the worst (Martin says yes).

But in one respect, Martin is unique on the Kenyon campus and rare among college students in general. He has cerebral palsy, the disorder in which damage to the brain impairs muscle movement. Martin cannot walk or care for himself without assistance. His life in college ― getting to room with his fellow students, carrying a more-than-full course load ― is a testimony to many things, including supportive administrators and his own stubborn determination. But, Martin says, none of this would be possible if it wasn’t for the help of government programs. And perhaps the most important among them is Medicaid, the federal-state health insurance program that provides coverage to the needy, including people with disabilities.

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Real Stories Of Americans Who Will Be Affected By The Proposed Changes To The ACA — And What YOU Can Do To Fight

A survey, conducted by Brunswick Partners, found that “75 percent of Americans agree that the proposed changes to Medicaid in the AHCA are a bad idea. And that we should not allow 14 million Americans to become uninsured even if there is a potential to reduce Medicaid spending. These results are significant because they find majorities of Americans identifying as conservatives (55 percent), moderates (82 percent) and liberals (90 percent) are opposed to the AHCA’s Medicaid provisions.”

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Losing Fat, Gaining Brain Power, on the Playground

Better grades might be found on the playground. A new study of elementary-age children shows that those who were not part of an after-school exercise program tended to pack on a particular type of body fat that can have deleterious impacts on brain health and thinking. But prevention and treatment could be as simple as playing more games of tag.

Most children do not meet the federal health guidelines for exercise, which call for at least an hour of it a day for anyone under the age of 18. Physical inactivity can result in weight gain, especially around the midsection — including visceral fat, a type of tissue deep inside the abdomen that is known to increase inflammation throughout the body. It is also linked to heightened risks for diabetes and cardiovascular complications, even in children, and may contribute to declining brain function: Obese adults often perform worse than people of normal weight on tests of thinking skills.

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Why ‘Dirt is Good’ For a Child’s Developing Immune System

Is my house too clean? Should I get a dog? Is it okay for my child to eat dirt?

For many parents, questions of hygiene and health weigh heavily on their minds. A new book argues that a fixation on cleanliness won’t lead to healthier children. It’s called “Dirt is Good: The Advantage of Germs for Your Child’s Developing Immune System.”

One of the book’s co-authors, Jack Gilbert, joins Chicago Tonight for a conversation. He’s a professor at the University of Chicago’s Department of Surgery and faculty director of its Microbiome Center.

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Average teens as sedentary as 60-year-olds, study finds

Here's some compelling evidence that Americans have become a sedentary bunch: Research suggests that the average teen is no more active than the average 60-year-old.

Researchers analyzed data from more than 12,500 people of various ages who wore activity tracking devices for seven straight days as part of national health surveys conducted between 2003 and 2006.

The study found that physical activity levels among children and teens were lower than previously thought. The World Health Organization recommends at least 60 minutes of moderate-to-vigorous physical activity a day for children ages 5 to 17.

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Supporting your child’s mental health

Much is discussed about taking care of your child’s physical health, from tips on diet and fitness to immunizations and safe sporting equipment, but what about mental health? Helping children feel good about themselves and teaching them how to manage their emotions can aid them all their lives.

Help your child build confidence

Not every child is going to have that bold, outgoing personality that can’t wait to speak up in class or take the stage for the class play. But every child can learn to feel confident about own self-worth and unique gifts. With a good foundation, confidence can grow. One of the easiest ways to build confidence is to encourage any special interests or attributes your child has.

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Mean federal budget proposal hurts children

The progress made in improving Tennessee children’s well-being is encouraging.

The state now ranks 35th in the 2017 KIDS COUNT report — up three spots from last year. This is the highest ranking Tennessee has earned in how states are measured upon the economic, educational, health and family state of children.

However, those gains are threatened by proposed draconian cuts in federal funding that could set back the Volunteer State’s kids.

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