Response: Disparity in outcome of young adults with ALL

Response

Thank you very much for your interesting and insightful comment that provides an additional and very important dimension to the discussion of what factors contribute to the differences in outcome for older adolescents and young adults with ALL. In the discussion section of our paper,¹  we hypothesized that one of the explanations for the worse outcome for the “older” adolescent (18-20 years old) who comprised the majority of patients on the CALGB trials, but the minority of the patients in the 16- to 20-year-old age group treated on CCG trials was their “emancipated” status—that is, that they may no longer have been tightly linked to parental supervision and support and, consequently, may have been less compliant with the follow-up visits and adherence to their outpatient medications that are so critical to the successful treatment of ALL.

As Drs O'Brien and Kantarjian astutely observe, one other very important possible explanation for the lack of compliance in these “emancipated” young adults is that they may not have had access to the same kind of insurance coverage as the younger adolescents who still receive coverage under the “umbrella” of their parents' or the states' insurance policies for children with life-threatening illnesses. We wholeheartedly agree that this may be another crucial component of care that is often overlooked when trying to explain issues of compliance and in analysis of treatment outcome for ALL. Using data that were collected at the time of patient entry onto the CALGB studies, we tried to identify what type of insurance coverage, if any, was listed for these young adult patients. Our results are not very satisfactory because insurance data were not captured for all patients. Of the 124 young adults entered onto CALGB studies, type of insurance was listed for only 56 (46%) of the patients: 35 patients listed private insurance, 8 listed Medicaid, 3 had military-sponsored health care, 3 were self-pay, and 7 patients indicated no insurance coverage at the time of study entry. As these numbers are incomplete and do not delineate the coverage for outpatient medications (the bulk of therapy for ALL) or the subsequent acquisition of coverage after diagnosis, it is not possible to comment on their significance. Furthermore, we have no information about the health care policies of the adolescents entered onto the CCG studies. It is clear, however, that medication costs alone can play a large role in compliance with the lengthy and costly regimens that characterize ALL therapy. These issues have been highlighted recently in national debates and in the press and have focused on the crucial need for health care reform in the United States.² 

To better address the hypothesis of Drs Kantarjian and O'Brien, we have included in our new US intergroup trial (C-10403; http://www.cancer.gov/clinicaltrials/CALGB-10403) which uses a pediatric regimen for treatment of all young adults aged 16 to 30 years with ALL, a number of patient surveys that will prospectively address some of these issues. Patients are queried about their insurance data and socioeconomic and psychosocial status, as well as their understanding of the importance of the different components of outpatient treatment of ALL. Our hope is that these surveys, along with careful surveillance of physician practice and adherence to protocol, will begin to provide some answers to the complex and fascinating questions surrounding the treatment and outcomes of young adults with ALL. At the national level, I also look forward to a fruitful 4 years that may bring the much needed reform to our health care system that will allow for more universal coverage for our citizens and may remove some of the barriers that likely contribute to poor outcomes for patients with ALL.