Fighting for children’s health care: A pediatrician’s perspective
Health policy decisions made in Sacramento and Washington trickle down to communities where the results are deeply felt. For Dr. Chamberlain, one baby’s story showed how big a difference policy can make.
I remember two things about my patient, Maria, a tiny baby who was born a little early. One was her large, beautiful eyes. The other was that when I put my stethoscope on her chest, I heard an enormous heart murmur. Maria had been born with a serious heart condition that would change her life and the life of her mom.
Good patient care at a time like this involves much more than treating a child’s heart. At that first appointment, Maria (not her real name), her mother and I began a long journey punctuated by multiple hospitalizations, surgeries and procedures.
Maria was born at Lucile Packard Children’s Hospital Stanford and lived with her mom in East Palo Alto. As her general pediatrician at Ravenswood Family Health Center, I came to know them both well. I focused on helping the tiny infant gain weight, so that she would be strong enough to undergo her heart surgeries. We brought in the Women, Infants and Children program to support her nutrition. I explained to her mom what the surgeries would do. I reviewed what Maria’s medicines were for, and when her mother couldn’t pay for them I helped gain authorization from county staff, who were able to get them dispensed at the pharmacy. When I realized Maria’s mom didn’t have enough money for food (due to many absences at work), I made sure she applied for food stamps.
My experience with Maria coincided with my research at Stanford involving access to care for kids in California. As a result of the research, I spent part of my time in Sacramento, working with legislators on changes to California Children’s Services (CCS). This program is critical to the care of low-income children with serious medical conditions. My research, which involved analyzing data on publicly insured pediatric care like Maria’s, showed that access to high-quality care for low-income kids was pretty good in California compared with other states, but that there was variation among its 58 counties.
While working on the program’s reform in Sacramento, I spent time in countless staff meetings, public hearings and hallway discussions. I often thought about Maria, whose life depended on CCS. The research data I brought to these negotiations was as important as sharing Maria’s story — how her mother lost her job because of time spent caring for her fragile daughter, how the family sank more deeply into poverty and how services needed to be more focused on families. As changes to the CCS system were being discussed, I imagined how they would benefit or hinder Maria’s care and her future.
I came away very impressed with how hard elected officials and their staff members work. They are dedicated and smart.
The health policy decisions made in Sacramento and Washington, D.C., impact health care programs, and these changes trickle down to communities where the results are deeply felt. Before spending time in Sacramento, I had been on the receiving end of seemingly capricious program shifts. I had spent my time at Stanford teaching, doing research and seeing patients in East Palo Alto. The policy arena was a foreign land, complete with its own calendar and language. But I came away very impressed with how hard elected officials and their staff members work. They are dedicated and smart. They ask good questions and scramble to understand the multiple, complex issues that confront them on a daily basis.
As a physician, I have experienced the scarcity of time firsthand. No matter how quickly I work, there never seems to be enough time. But legislators and their staff members have even more compressed days. The speed with which they meet, consider, decide and take action is exhausting. They are open to, and benefit from, the perspectives of parents, doctors and patients, and they value the work of advocacy groups, in this case Family Voices, a group that advocates for children with special needs. As California’s legislators considered changes to the CCS program, this input helped to inform legislation to protect children and minimize the potential for unintended consequences.
I am happy to say that Maria is thriving. The talented pediatric surgeons and cardiologists at Lucile Packard Children’s Hospital saved her life, and the network of community support systems and programs coalesced to make it all happen. She now is in elementary school, and her mom is back at work. Maria had access to the right care at the right time, and she wasn’t dependent on her family’s ability to pay. This is something to celebrate — the CCS program and the state of California enabled everyone to do their jobs and do them well.
I realized that bringing the voices, experiences and patient stories to the policymaking arena leads to policy shifts that have fewer unintended consequences
The programs that support the most vulnerable kids like Maria cannot sustain significant changes without risking the well-being of children. Moreover, health policy that works well in communities cannot be created in a vacuum. Through my experience, I realized that bringing the voices, experiences and patient stories to the policymaking arena leads to policy shifts that have fewer unintended consequences. It is up to us all to engage with our dedicated policymakers to protect what is working while improving the systems so many depend upon. We need this engagement now more than ever.
Hear more from Lisa Chamberlain about how policy can affect children’s health and how programs like Medicaid benefit all children:
This piece was originally published by Stanford Medicine.