As Many Sick Kids Wait for Care, Jacksonville Family Speaks Out for Preserving and Improving Children’s Access
Proposed Cuts to National Programs Would Harm Children’s Ability to Access Timely, Quality Health Care
July 9, 2012
As federal legislators continue to grapple over the best way to bring better health care to all Americans, children’s health care hangs in the balance. That’s why a local Jacksonville family is taking their story to Washington, D.C., this month to ask Congress to take action to protect care for children in the face of proposed cuts to national healthcare programs kids rely on.
Chloe Marshall and her family will join nearly 30 other children’s hospital patients and their families traveling to the nation’s capital to help bring to life the importance of adequate funding for pediatric care as part of the Children’s Hospital Association’s Family Advocacy Day, taking place July 23-25, 2012. The event includes one-on-one congressional visits, a congressional luncheon, a tour of Washington and a celebratory dinner to honor the child patients known as Family Advocacy Day “All Stars.”
The Marshall family knows firsthand the value of quality pediatric care. Chloe was born in December 2009 with a rare and serious heart defect called persistent truncus arteriosus. In this condition, the embryological structure known as the truncus arteriosus fails to properly divide into the pulmonary trunk and aorta. Chloe was immediately sent to the Newborn Intensive Care Unit at Wolfson Children’s Hospital while awaiting open heart surgery. At only a few days old, Chloe had her ventricular septal defect (a hole in the wall between the right and left ventricles of the heart) closed with a patch, and her pulmonary arteries were then detached from the common artery (truncus arteriosus) and connected to the right ventricle using a tube; fortunately, she recovered well. Soon after her surgery, it was confirmed through a blood test that Chloe also had DiGeorge syndrome, a deletion on the 22nd
chromosome. One of the effects of this syndrome is a weakened immune system causing her to have multiple life threatening respiratory infections. Now 2-1/2 years old, Chloe recently had another open-heart surgery at Wolfson Children’s Hospital and will need more surgeries in the future. But for now, she is doing great and growing bigger and stronger every day.
“We feel incredibly blessed for the specialized care and attention our Chloe receives from the physicians and nurses at Wolfson Children’s Hospital,” said Donya Marshall. “Timely access to pediatricians and specialists for all children is critical. We’re taking our story to Washington to help our leaders recognize the need to protect and preserve quality health care for kids all across the country.”
Experts agree that several proposals have the potential to harm children’s access to care.
- Children’s Hospitals Graduate Medical Education (CHGME), a national program solely devoted to helping children’s hospitals train pediatricians and pediatric specialists, supports the training and development of nearly half of all pediatricians and pediatric specialists practicing in the U.S. Unfortunately, CHGME funding is far below the support needed to close the gap between demand for care and the supply of pediatric specialists. The result is a national shortage of pediatric specialists.
- Medicaid, a federal-state program that provides health coverage to one in three children faces proposals that would slash program funding. President Obama’s fiscal year 2013 budget proposes Medicaid cuts of $56 billion over a 10-year period. The House fiscal year 2013 budget proposes capping the amounts of funding states receive for Medicaid, which could negatively impact children’s health care.
“Because kids get sick, and some kids get very sick, timely access to well-trained pediatricians and pediatric specialists should be a priority for Congress,” said Wolfson Children’s Hospital President Michael D. Aubin. “Children are not small adults. They are constantly growing and developing, and need specially trained healthcare providers who can meet their needs. To ensure they get the best care to grow and succeed child health programs should be protected, not cut.”
The Children’s Hospital Association will release findings from a survey of children’s hospitals to better understand the impact of pediatric specialist shortages on children’s ability to access timely medical care. The release will occur during Family Advocacy Day (July 23–25).