Max Page, best known as the “Darth Vader Kid,” is lobbying Congress at just 12 years old.
Max starred in the beloved 2011 Volkswagen Super Bowl commercial in which he dressed as Darth Vader and tried to summon the power of the force to make objects work without touching them, like in the Star Wars movies.
Not all healthcare policy in Washington is messy and partisan; sometimes we just need to do what’s right. Every year, I meet with courageous families in Washington and Texas who introduce me to their children who suffer from complex medical conditions. These brave children require the care of multiple pediatric providers at multiple locations, sometimes out of state. All too often these families are forced to spend hours and hours navigating bureaucratic red tape, rather than focusing on caring for their loved one.
Medicaid, administered by individual states, plays a primary role in providing coverage for these children. For more than three years now, I have worked with children’s hospitals, primary and specialty care providers, state Medicaid directors, family advocates and our colleagues in the Senate to find common ground and improve the Medicaid program. As a result, Rep. Kathy Castor (D-Fla.) and I, along with Reps. Gene Green(D-Texas), Anna Eshoo (D-Calif.), Dave Reichert (R-Wash) and Jaime Herrera Beutler (R-Wash.) reintroduced the bipartisan Advancing Care for Exceptional Kids Act of 2017 (the ACE Kids Act).
Congressional Republicans’ plans to repeal and replace — or even just repeal — Obamacare may be on hold for now, but four Pennsylvania mothers of chronically ill and seriously disabled children said Tuesday they can’t afford to let up on their efforts to preserve the public program that pays for their children’s care.
As guests of the Pennsylvania Health Access Network (PHAN), a statewide health consumer advocacy group, the women spoke out about what cuts to Medicaid – a part of virtually all the GOP’s proposals – would do to working families like theirs. Although Medicaid is most often thought of as a health-care provider for the poor, it also funds care for people with severe conditions that would not be fully covered by private insurance.
For Marlee Stefanelli, 39, of South Abington, Medicaid helps pay for 5-year-old son Matthew’s 24-hour blood-sugar monitoring device, which makes it possible for the boy to go to school. The special device monitors Matthew, who has Type 1 diabetes, and sets off an alarm that lets teachers know if his blood sugar levels become unstable.
One of the primary reasons the Senate Republicans' proposal to repeal and replace the Affordable Care Act failed to get enough votes is because of how it would have cut Medicaid spending. Children's hospitals are particularly concerned about the possibility of Medicaid cuts, and the impact on children.
Here & Now's Robin Young talks with Mark Wietecha, president and CEO of the Children's Hospital Association, about his concerns about Medicaid cuts and what kind of health care revisions he wants to see.
North Brunswick resident Khalil Pereira, 22, was in a car accident while driving home from college and suffered a severe traumatic brain injury. He was 18 years old at the time and in his first year of college.
He spent weeks in intensive care and another six months at Children’s Specialized Hospital’s acute inpatient rehabilitation facility in New Brunswick, learning to walk, talk, eat, breathe on his own, and regain control of his body. He relied on Medicaid to cover cranioplasty surgery, neurosurgeon visits, outpatient therapies, transportation and other care vital to his recovery.
The U.S Senate's plan to replace Obamacare would cut funding for Medicaid and other health insurance subsidies by more than $1 billion a year within five years. That has many lawmakers, doctors, hospitals and patients across Massachusetts in a state of alarm.
"Where in this bill is the protection for children," asks Dr. Jonathan Davis, the chief of newborn medicine at Tufts Medical Center, as he stands in the hospital's NICU among babies who weigh as little as 1 pound. Roughly 60 percent of babies in the Tufts NICU are covered by Medicaid.
Davis pauses in front of an incubator that holds a tiny girl, just a few days old, who weighs 2.5 pounds. Her little lungs pump several times a second.
As a new parent, Jack Gilbert got a lot of different advice on how to properly look after his child: when to give him antibiotics or how often he should sterilize his pacifier, for example.
After the birth of his second child, Gilbert, a scientist who studies microbial ecosystems at the University of Chicago, decided to find out what's actually known about the risks involved when modern-day children come in contact with germs.
"It turned out that most of the exposures were actually beneficial," Gilbert says. "So that dirty pacifier that fell on the floor — if you just stick it in your mouth and lick it, and then pop it back in little Tommy's mouth, it's actually going to stimulate their immune system. Their immune system's going to become stronger because of it."
TAMPA, Fla., July 15, 2017 /PRNewswire-USNewswire/ -- This week, 12-year-old Natalia Ricabal joined nearly 50 other pediatric patients from across the United States on Capitol Hill to urge their members of Congress to protect, not cut, children's Medicaid funding as proposed in recently introduced federal bills, the American Health Care Act of 2017 and the Better Care Reconciliation Act of 2017.
Natalia was diagnosed with Ewing's sarcoma, a rare form of bone cancer, in August 2013. Her treatment required multiple surgeries, including a limb salvage procedure in which her femur was replaced with a cadaver bone, a year of aggressive chemotherapy, a month of daily radiation treatment, and substantial physical therapy.
Her family traveled to Washington D.C. as part of the Children's Hospital Association's annual Family Advocacy Day. The July 11-14 trip included one-on-one meetings with U.S. Representatives Gus Bilirakis, Vern Buchanan, Kathy Castor, Charlie Crist, Dennis Ross, Darren Soto and Senator Bill Nelson; a tour of Washington D.C.; and a celebratory dinner to honor the children and their families.
Special needs parenting—like all parenting—is a job that’s rife with emotion. Most often, though, I find much of my heart is divided between hope and despair.
Hope overwhelmed me when I first met my squirmy newborn, full of vim and vigor, the whole world in his tiny hands. But the despair that followed his first diagnosis, and each that has followed, has been all consuming. You grieve the future you imagined for your child and question where the world will take him.
We received Wayne’s diagnoses in fits and starts over the past six years, an emotional roller coaster our family will always ride. Failure to thrive, a meek newborn who couldn’t quite get the hang of eating. Missed milestones and confusing doctor’s visits over the years. Tests that confirmed a brain abnormality and a less than conclusive label of “atypical white matter brain damage” and suspected cerebral palsy. And with each diagnosis came tears and questions. And paperwork.
Potentially harmful chemicals that were banned from children’s teething rings and rubber duck toys a decade ago may still be present in high concentrations in your child’s favorite meal: macaroni and cheese mixes made with powdered cheese.
The chemicals, called phthalates, can disrupt male hormones like testosterone and have been linked to genital birth defects in infant boys and learning and behavior problems in older children. The chemicals migrate into food from packaging and equipment used in manufacturing and may pose special risks to pregnant women and young children.
The Food and Drug Administration has not banned their presence in foods, though a 2014 report to the Consumer Product Safety Commission urged federal agencies to assess risks “with a view to supporting risk management steps.” The report concluded that food, drugs and beverages, and not toys, were the primary source of exposure to phthalates.