A little boy shuffles down the hallway in his yellow hospital-issued socks, completing yet another lap around the unit. You would never guess that he has leukemia, a blur of dark hair and restless energy. In many ways, he is the healthiest child on the pediatric oncology floor. Today marks his twentieth consecutive day in the hospital. Yet he does not have to be here to receive the drug he needs.
Our nation’s pediatric home health system is to blame.
The pediatric home-care system lacks the capacity and payment structures to support therapies like this at home for all children who need them. As a result, children are forced into prolonged hospital stays for treatment that could be delivered safely outside the hospital. Congress could address this failure by extending to children the same home-based services it has repeatedly protected for seniors.
Our children deserve care that is at least comparable to what we provide for older adults.
The reality of pediatric cancer treatment
The drug this boy is receiving is blinatumomab, or “blina” for short, one of the most significant advances in childhood cancer treatment in a generation. In late 2024, a landmark trial showed that adding blina to the standard therapy increased survival by 10 percent and prevented two out of every three relapses in children with acute lymphoblastic leukemia (ALL), the most common childhood cancer. Even more remarkably, it is a therapy that can cure children without making them feel sick.
As a pediatric oncologist, I care for children receiving blina both in the hospital and at home. I have seen firsthand what the data show: Children receiving blina can and should be home, sleeping in their own beds, attending school, and living their lives.
If this same boy lived in another part of the country or had different insurance, he might be on a playground with his infusion pump tucked into a backpack. Instead, with no local pediatric home-care agency able to support the treatment, his family faced an impossible choice: forgo lifesaving treatment or remain hospitalized for a month at a time.
This is not a medical problem. It is a care-delivery failure.
Blina is administered as a continuous 24-hour intravenous infusion for roughly a month at a time. It requires exchanges of the multi-day drug-containing bags, line care, and close monitoring, all well within the scope of pediatric home care. Yet an estimated 70 percent of children in the United States lack access to the services needed to receive blina safely at home. Many instead face the equally burdensome reality of intensive outpatient care, frequent clinic visits, transportation challenges, and missed work and school, all for care that could safely be delivered within the home.
The structural barriers to pediatric home care
The reasons are structural, including several key barriers:
- Reimbursement rates too low to sustain pediatric home-care programs
- A nationwide shortage of pediatric-trained home-care nurses
- Decades of underinvestment in home- and community-based care for children with complex medical needs
Science has moved forward, but our infrastructure has not.
Medicaid is the primary payer for pediatric home care. While federal law entitles children to these services, that promise is unevenly realized. In some regions, pediatric home-care agencies simply do not exist. Provisions in the so-called “One Big Beautiful Bill Act” will introduce deep cuts to Medicaid and the Children’s Health Insurance Program. History shows what happens when state Medicaid budgets tighten: “Optional” benefits like home and community-based services are among the first to go, especially in rural areas.
Pennsylvania families are not immune to these pressures. Even in a state celebrated for its world-class medical institutions, access to pediatric home-care services remains patchy. Without action, one of the greatest breakthroughs in childhood cancer risks widening the inequities we already see in pediatric care.
The financial and human cost of hospitalization
There is, however, one argument that should resonate across party lines: cost.
Keeping an otherwise healthy child hospitalized for a month is extraordinarily expensive. Children’s hospitals report daily charges that can exceed $5,000 per day, meaning a single month-long cycle of blina can run well into six figures before accounting for labs, imaging, and inpatient staffing.
[Image comparing pediatric inpatient care costs versus pediatric home health care costs]
Meanwhile, published evaluations of home-infusion pathways for blina show savings of $30,000 per patient in drug-related costs alone. When care can safely move home, costs fall and scarce inpatient beds can be preserved for the sickest children.
We have already seen what is possible when policymakers invest in care delivery. Just a few months ago, the U.S. House of Representatives overwhelmingly approved extending Medicare’s “Hospital at Home” through bipartisan leadership, including Pennsylvania Reps. Lloyd Smucker and Rep. Dwight Evans. Children deserve that same commitment. The contrast in pediatrics is stark. Despite great need, children remain largely excluded from the home-based care wave widely embraced for adults. There are only two pediatric “Hospital at Home” programs nationwide and far fewer options for pediatric home health services.
A call for policy reform
Scientific breakthroughs matter only if they reach the people they are meant to help. No child should spend months confined to a hospital to receive treatment that could safely continue at home. Congress should direct the Centers for Medicare and Medicaid Services to launch a pediatric home-infusion demonstration program, with enhanced federal matching and dedicated funding for states to sustain pediatric home-care capacity, including pediatric nurse training and expanded rural services.
With targeted federal incentives and thoughtful payment reform, we can make sure that the next great pediatric cancer innovation reaches every child and build the care infrastructure that lets children heal where they belong: at home.
Alexis Chen Boulter is a pediatric hematology-oncology fellow.
