Children's health gains are at risk of reversal

It is bitterly ironic that during this season when our newspapers and televisions are filled with touching stories of children with a variety of serious chronic illnesses -- such as cystic fibrosis, diabetes, cancer, autism and sickle cell anemia -- the policies that shape our public commitment to these children have never been at greater risk.

Children with a chronic illness require two things: comprehensive health insurance and access to specialty care. The good news is that a number of counties, led by efforts in Santa Clara County, have implemented programs to provide basic health coverage for all children. The bad news is that the development of county-by-county programs is creating a highly inefficient patchwork quilt of programs with differing eligibility and benefit rules. Moreover, this haphazard approach leaves the long-term funding base for many of these programs unclear.

The second requirement, access to specialty medical care, is the essential component at greater risk. During the 1960s and 1970s, California created regional networks of community providers and specialty hospitals to facilitate referrals and immediate hospitalization for children with complex or critical cases. Coordinated by California Children's Services, a state agency, these networks have had a dramatic impact, resulting in great improvements in children's survival and quality of life. The system is one of the real triumphs of modern child health care.

This success, however, is currently being undermined by a remarkable indifference to the needs of seriously ill children as federal and state governments seek to cut health care spending. In Washington, the recently passed House budget covered the costs associated with Hurricane Katrina by slashing Medicaid funding for the poor and disabled. Beyond its breathtaking cynicism, this step will ultimately hurt our state's ability to address the needs of poor children with serious illness.

At the state level, a variety of proposals are swirling in Sacramento to dramatically alter or abolish our current systems for caring for seriously ill children. Although some are well-intended and seek to make much-needed improvements, most are concerned with cutting costs and are wildly uninformed. A major problem with much of this discussion is that children are being thrown into policy changes that are primarily directed at adults. This is understandable in some measure because the vast bulk of expenditures are generated by adults.

But children are not just small adults. Their patterns of health problems are very different and they are far more vulnerable to even slight interruptions in access to specialty care. This is because serious, urgent illnesses in children are relatively rare. While most health care facilities have the capacity to handle most serious adult cases such as heart attacks and diabetes, they commonly lack experience in dealing with seriously ill children, such as a 6-year-old who has sickle cell anemia with acute chest syndrome, a relatively rare but urgent, life-threatening condition in a child.

The regional referral systems have been set up precisely to address this kind of situation. However, these networks are based on a fragile set of financial structures, and great care will be needed to ensure that revised policies strengthen rather than undermine them.

The issue is not really one of cost. Public expenditures on children's health are minuscule when compared to those spent on adults. Indeed, this is one of the main reasons that children's health issues are being overshadowed by a focus on adult care. The current approach seems to be to worry about the elements of the adult policies now and deal with the child-focused details sometime in the future. The problem is that children with severe disorders live and die in the details.

A recent survey from the Lucile Packard Foundation for Children's Health (``What Bay Area Parents Worry About Most,'' San Jose Mercury News, Oct. 27) pointed up some of the many financial and emotional pressures faced by parents of children with chronic illnesses (see accompanying box). Today, there is a striking opportunity for the governor and the Legislature to provide statewide leadership in support of those families.

First, there can be no excuse for not working with the counties in creating a strong and stable program to insure all children in California. The counties already have done the heavy lifting on this issue; it is time for the state to act. Second, the incoherence in the public debate over the best ways to reform programs for children with chronic illnesses must end.

Our elected leaders must ensure that the enormous capacities and commitment of state health agencies are more purposefully linked to the real-world insights of parents with seriously ill children and health providers who have long cared for these children.

Such a process will best ensure that necessary reforms and cost reductions are constructive and that the quality and coordination of care actually improve.

However, without such a process -- one that respects the special requirements of children -- the successes of the past will be left unprotected, the real opportunities for constructive change will go untouched and, ultimately, our hearts and private charity will be increasingly uncoupled from our collective commitment to health policies that are both effective and just.

Parenting children

with chronic illnesses

Parents of children with chronic illness, compared to parents of children without chronic illness, are:Three times as likely to report that their family income is not enough to provide for their child's basic needs.

Twice as likely to report that their child's level of stress is ``high'' or ``very high''.
Four times as likely to be ``very concerned'' that their child may be depressed.
Source: Survey of Bay Area parent opinion conducted by the Survey and Policy Research Institute at San Jose State University for the Lucile Packard Foundation for Children's Health, October 2005.

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