Julia and Mia Paperella have suffered the type of pediatric disorders that require specialized care and years of therapy. Julia, 11, was an infant with life-threatening food allergies that caused ulcers, followed by speech delays. Mia, 8, had such hypersensitive skin that it made it difficult for her to put on clothes.
They found help with doctors and therapists at New Jersey’s Children’s Specialized Hospital, but a new study says that similar cases could be left untreated for months due to a shortage of pediatric specialists. Indeed, concern that current funding will be cut back is leading Julia and Mia, along with members of the Children’s Hospital Association, to meet with members of Congress today to ask for more money to train pediatricians.
“I sit in the waiting area and I’ve seen all kinds of parents and their desperate attempt” to get help for their children, said their mother Gina Paperella of Bayville.
While the healthcare reform debate spotlights shortages of generalist physicians, more severe shortages are becoming apparent in the field of pediatrics. And the lack of specialists is resulting in long waits before children can be seen, according to areleased yesterday, particularly in neurology and behavioral-developmental medicine.
“It’s really life and death, and we’re not moving to make sure there’s enough clinicians out there,” said Amy B. Mansue, president and chief executive officer of Children’s Specialized Hospital.
The lack of developmental pediatricians is a particular concern in New Jersey, where one in 49 – or about 2 percent of all children -- are diagnosed with autism, according to the federal Centers for Disease Control and Prevention.
Meanwhile, there are just 51 licensed developmental specialists, doctors who have special training in child development and children with special needs, Mansue said. “You can see the disparity in the number of children who get the services.”
The shortage is mirrored nationwide. Three out of four hospitals say the shortages have caused delayed appointments, according to the national survey of children’s hospitals. “By the time a child is able to get in for an appointment, he or she may be waiting up to seven times longer when compared to the ideal two-week appointment wait time that hospitals strive for,” the survey says. In the most affected specialties, children can wait nearly 15 weeks for appointments in developmental-behavioral medicine and nine weeks in neurology.
The federal government funds the training of pediatricians at freestanding hospitals -- those not formally tied to any other hospital or healthcare organizations -- including Children’s Specialized Hospital based in Mountainside. The training falls under the Children’s Hospitals Graduate Medical Education (CHGME) program. It was enacted 13 years ago to provide funding for residencies and fellowships, the training the physicians get in a hospital once they leave medical school. (Medicare and other federal programs also provide funding for residencies, but most of the money goes to hospitals that also serve adults.)
But cutbacks to the education program are what brought Julia and Mia and the group representing children’s hospitals to Washington, D.C. “We want lawmakers to put a face to the cause and not look at it as numbers,” said Gina Paperella “Budget cuts shouldn’t be made on the backs of the children.”
While Obama’s 2013 budget sets aside $88 million for training pediatricians and pediatric specialists, it’s a third of the money allocated last year when Congress stepped in to reverse the president’s decision to eliminate the money entirely.
The White House Office Management and Budget, in its report on, says the $88 million is enough to pay for the direct expenses of the program. The children's hospitals will be asked to find other sources of funding to support indirect expenses, such as additional diagnostic tests that residents may order during their clinical experience.
Last year, U.S. Rep. Frank Pallone Jr. (6th-District) was among the lawmakers who introduced legislation to restore the money to train pediatricians at the children’s hospitals.
“I will continue to fight to preserve funding for the Children’s Hospital Graduate Medical Education Program (CHGME), which is critical to the training of pediatric doctors nationwide,” Pallone said yesterday in an email. “I was proud to introduce a bill, that passed the House last September, to renew funding for the program for the next five years, and believe Congress must increase funding to this vital program to protect our children’s health.”
Across the country, 56 children’s hospitals benefit from the CHGME money. Children’s Specialized Hospital is the only hospital in New Jersey that receives federal dollars to train specialists. Last year, 19,265 children were treated in 10 locations across the state, and the hospital expects to expand in Newark early next year, Mansue said.
Children’s Specialized Hospital receives just a small slice of the federal money, about $50,000 a year, Mansue said. The money covers about 10 percent of the costs to teach doctors -- 113 physical medicine and rehabilitation residents trained in the facility since 1999.
Nationally, the bigger children’s hospitals get bigger slices of the funding pies, with children’s hospitals in Philadelphia and Boston receiving about $20 million each year to train pediatric specialists. Altogether across the nation, 5,600 pediatricians and pediatric specialists get the specialized training because of the federal money -- 40 percent of the nation’s pediatricians and 43 percent of pediatric sub-specialists.
But as care for the smallest patients has evolved into high-tech treatments and life-saving procedures, advocates fear those numbers are nowhere near enough.
It’s not just a training issue. Medicaid covers one in three children, making it the largest payer of children’s healthcare services. Yet, the federal program faces funding cuts and plays a role as an “economic disincentive” to doctors choosing a career in pediatric specialty care since an average Medicaid reimbursement is nearly 30 percent less than Medicare, according to the national survey.
“Although significant progress has been made to support children’s healthcare in recent years, children still face barriers when accessing pediatric care,” said Mark Wietecha, president and CEO of the Children’s Hospital Association. “Children deserve better. More needs to be done to ensure they’re getting the care they need, when they need it and in the right care setting.”