No Patient Left Behind: Finding Cancer Care for Noncitizen Children

Presentation at the APOSW Annual Meeting in Norfolk, VA, May, 2005

Childhood cancer is an equal opportunity disease, striking one in every 300 children in the USA without regard to race, ethnic group, or family income. Presently the rate of childhood cancer is increasing at about 1% a year. Some children may be at increased risk for developing cancer due to environmental exposures at home or via their parents' work. Particularly affected are low-income children—often the children of recent immigrants—whose parent(s) work in certain industries and in agriculture. However, there is anything but equal opportunity when it comes to securing treatment for all children who develop cancer.

To be able to assist all uninsured child patients from low-income immigrant families, it is important to understand the legal-political framework affecting their eligibility for public benefits and to learn how to seek help given the situation. This presentation examines key concepts in detail, including:

Social workers and other members of the oncology team need to develop and strengthen skills relating to the social context of a child's illness. A major barrier to receiving timely diagnosis and appropriate care is lack of health insurance. The welfare and immigration reform laws in force since 1996 have created even more barriers for those in low-income immigrant families, due to the enactment of the 5-year minimum bar on receiving public benefits for most. There is a direct correlation to a child's being insured and the citizenship status of parent(s). At least one-third of children eligible for Medicaid and/or state programs, but not enrolled, are the children of immigrants. But some 75% of children of immigrant parents are themselves US citizens, and thus eligible. A combination of misunderstanding on the part of both families and enrollment workers, communication problems due to language and cultural barriers, and an anti-immigrant political climate, have meant that eligible children are not being signed up for programs to which they are entitled. When a child develops cancer, the lack of coverage can be lethal.

Now more than ever it is critical that oncology social workers enlist the help of immigrant advocacy and legal services organizations for assistance in determining a child's eligibility and in enrolling those who qualify. The particulars of immigration law and its many special categories and rules are quite complex, mandating the need for expert help. Likewise, child welfare organizations, at both the community and national levels, can offer valuable assistance in finding support for children not eligible by virtue of their immigration status, and for underserved children in general.

Further information is shared on rationale and techniques for working for system change so that no child is denied timely treatment now or in the future. Case examples from various states are included, along with tips on how to strategize treatment and supportive care plans for individual children. The presentation concludes with information about relevant national policy issues and current proposed legislation.

The presentation concludes by examining the even more difficult, but no less important, current situation facing children in need of cancer care in low- and middle-income countries of the world. Access even to diagnosis is extremely limited and appropriate treatments are often simply unavailable or priced out of reach of the majority of families. The result is a very high mortality rate, in stark contrast to the greatly increased survival and cure of children with cancer in wealthy nations. Due to enhanced global communications, families are aware that excellent cancer treatments are available in the USA, and seek them for their children when care is not available at home. Due to financial and logistical barriers, this avenue too is almost impossible for most.

Included here is a step-by-step guide for assessing whether care for an individual child in the US could reasonably be considered, basics of how to go about making such arrangements, and other possible alternatives. Also examined is the context in which these grave access problems occur. Specific focus areas such as the need for affordable medicines, the role of governments and nongovernmental organizations, and initiatives that can be undertaken by individuals and institutions are covered.

Current world events should also convince us that now is the time to extend the well-known therapies that have turned around childhood cancer for the few, to the many worldwide who need them. The international segment of the presentation closes with a call to action to join in existing efforts—and to create new ones—to end this inexcusable situation.

To view the slide show "No Patient Left Behind: Finding Cancer Care for Noncitizen Children", presented at the 2005 APOSW Annual Meeting, please send an e-mail request to jdr@ramoslink.info. Be sure to include your full name, affiliation, and a brief statement about your interest in the topic. Also, please indicate if you would be interested in becoming part of a future network addressing children's access to cancer care.

Resource Guide

Selected Bibliography