AT THE beginning of the year, the US surgeon-general declared 2005 the “Year of the Healthy Child”. And there is much to celebrate about the health of American children: tremendous progress in medical treatments, a growing recognition that children are not merely little adults, and more children than ever covered by health insurance.
But when New Scientist took a closer look at what is happening in the children’s hospitals that lead the way in paediatric research, training and clinical care, it became clear that some serious problems threaten to undermine the rhetoric. We heard from paediatricians who say they are still struggling to meet the basic goal of delivering quality healthcare tailored to children’s special needs. And we found that funding for children’s hospitals is under threat on more than one front: there are question marks over future funding for training researchers, and Medicaid cutbacks could dry up a significant source of revenue.
Thomas Boat, chairman of paediatrics at Cincinnati Children’s Hospital in Ohio, sums up the feelings of many in the field when he says that the surgeon-general’s declaration “rings hollow”. He accuses Washington of promising action on the one hand while cutting programmes that support children’s health and welfare on the other. “Raising awareness about children’s health is good, but there has got to be substance behind it.”
Children’s hospitals are vulnerable to budget cuts no matter where these strike. If the funding is pulled in one area, it can mean resources from another are used to fill the gap, Boat points out. “It’s not a matter of focusing either on training or research or patient care. They are all integrally linked, so one imbalance will affect all of them.” A drop in revenue from clinical services can reduce the amount available to doctors for their research projects and training, for example.
Of biggest concern are cuts to Medicaid, which on average provides children’s hospitals with half their patient-care revenue. Congress passed a $2.65 trillion federal budget in April that aims to slash Medicaid support to states by $10 billion over five years as part of the administration’s effort to reduce the federal deficit. Children’s hospitals nationwide could be badly hit.
Many states are also planning programme restructuring or cuts. In Ohio, for example, a 1 cent sales tax that helps pay for Medicaid is likely to be repealed soon, Boat says.
“Medicaid funding is more at risk than usual this year,” says Peters Willson of the National Association of Children’s Hospitals (NACH), which represents more than 120 hospitals nationwide. “The way in which Medicaid is cut could have a ‘tipping point’ effect because children’s hospitals are so heavily financed by the programme.”
And Medicaid is not the only budget battle this year. Congress is considering whether to re-authorise the Children’s Hospitals Graduate Medical Education Payment Program for 2006-2010, which provides more than $300 million annually to 60 independent teaching hospitals. It helps pay for the training of paediatricians, many of whom also conduct research. “This funding directly supports the training of the future paediatric research workforce of the nation,” Willson says.
Cuts in Medicaid could have a ‘tipping point’ effect because children’s hospitals are so heavily financed by it
Money for research grants is also likely to drop. The US National Institutes of Health gives around a third of its total funding for paediatric research to children’s hospitals and affiliated medical schools. But many commentators expect funding from the NIH, which provides the bulk of financial support for many children’s hospitals (see Graphic), to remain the same at best, or to gradually decline.
If these funding reductions are enacted, children’s hospitals will need tighter budgets in all areas. Vocal objections by advocates for children’s health have so far managed to protect academic medicine, but hospitals cannot count on persuading the lawmakers every time. None of the hospitals contacted by New Scientist is planning any cuts yet, but they are cautious about expanding further. Cincinnati Children’s Hospital, for example, is already looking at whether it needs new employees and programme expansions, Boat says. “We have to prepare and try to keep as many programmes going as we can.”
One size fits all?
Children’s health needs differ from adults’, and their treatment must be tailored accordingly. That is the premise behind the Pediatric Research Equity Act, the landmark 2003 federal legislation that forged collaborations between the government, children’s hospitals, universities and pharmaceutical companies, and spurred the development of drugs specifically for children by giving the Food and Drug Administration (FDA) clear authority to demand safety testing in children, not just adults.
But there is another pressing challenge that lies outside the scope of the act: developing safe and effective medical devices for children. Take stents, the devices routinely used in adults for holding open blood vessels and breathing passages. These don’t come in children’s sizes, so where children need them, paediatricians have to modify an adult version.
“It makes us – and even the patients and their families – worry because we don’t have the engineering expertise,” says Jon Abramson, a paediatrician at Wake Forest University in Winston-Salem, North Carolina. What’s more, children outgrow their implants, so they often need repeat operations to fit a replacement as they grow. This happens to children with hydrocephalus, who require tubes and pumps to shunt excess fluid out of their brains.
“There’s a great need for devices for children not currently being met by the medical manufacturing industry,” says Andre Muelenaer, medical director for the Carilion Biomedical Institute in Roanoke, Virginia. But because the market for child-sized devices is relatively small, manufacturers have been reluctant to put much effort into producing them.
To encourage government intervention to help fill this void, a group of major players in children’s health put forward a series of recommendations to Congress in January. As well as researchers, it included the American Academy of Pediatrics, the Elizabeth Glaser Pediatric AIDS Foundation, NACH, government agencies and the manufacturers’ association AdvaMed. Its recommendations for getting child-friendly devices developed, tested and brought to market include tax breaks for companies, and regulatory changes to streamline the approval process. In addition, the US Institute of Medicine will issue a report in July that examines how the FDA might monitor the safety of implantable devices for children.
Meanwhile, the first consortium aimed at developing paediatric medical devices is sprouting in Virginia, led by Muelenaer and Alfred Wicks, a mechanical engineer at Virginia Tech in Blacksburg. “This is about taking what we’ve got and making it work now,” Wicks says. He and Muelenaer hope to recruit device manufacturers and turn a regional consortium into a national one. But to do that they will need to convince Congress to back their request for $2 million in start-up money, and persuade the government to promote new legislation and regulations to help get devices like theirs into hospitals.
The good news is that new technologies and drug treatments are allowing children with once fatal diseases such as cystic fibrosis, cerebral palsy, spina bifida and congenital heart defects to survive into adulthood. But this success brings further challenges.
In particular, it raises the question of how to prepare children with special needs for the bigger world of adult care, in which few doctors are trained to help them. An estimated 600,000 children with chronic illnesses are reaching adulthood each year. “Most children’s hospitals close their doors when a patient turns 18 or 21, and few prepare young people for moving on,” says John Reiss of the University of Florida Institute for Child Health Policy in Gainesville. Betty Presler, a nurse practitioner at the privately funded Shriners Hospital in Lexington, Kentucky, who helped develop a transition programme there, says monitoring these young people is vital throughout the move. Yet one survey found that only 6 per cent of families received help in making the transition. “This is a hot issue because it is the measure of our success, and it looks like the paediatric healthcare system is failing,” Presler says.
Politicians and officials are keen to be able to claim the Year of the Healthy Child is improving the well-being of the young. But as those working in children’s hospitals point out, if issues as important as funding are glossed over, no amount of good intentions will improve children’s health.