The medical goal for children diagnosed with pediatric cancers is remission or cure, but consistency and speediness of health insurance coverage is critical to access to preferred treatment. The therapeutic intervention differs based on the cancer type, stage, tolerance of the child to radiation and pharmaceutical agents, and numerous other factors. For this reason, the physician and medical team develop an individually-tailored treatment plan that depends upon a payment source to sustain it over a period of time.  Naturally, the costliness of pediatric cancer treatment is of keen interest to employer-sponsored health insurance plans, state Medicaid agencies, and Medicaid health plans – which together cover the vast majority of all American children with cancer.

Background and Stats on Childhood Cancers:

Annually, around 12,000 children in the U.S. are diagnosed under age 20 with cancer and cancer remains a leading cause of pediatric death.1 Leukemias, brain cancer, and central nervous system (CNS) cancers are the ones most commonly found in childhood, and the highest incidence rate is among children between 1-4 years old.2 Furthermore, these forms account for nearly half of all diagnosed childhood cancers.3 While cancers in adults are classified by the primary tumor anatomical site, pediatric cancers are classified by histology (tissue type).4

Besides environmental factors (e.g., exposure to unsafe levels of radiation and specific chemicals) and inherited risks, the cause for most childhood cancers is largely unknown. However, genetic mutations typically occur in children afflicted with cancer that cause tumor suppression genes to “turn off”. A recently discovered risk factor for acute lymphoblastic leukemia (ALL) is a modification within the PAX-5 gene, which (like knowledge of the BRCA gene related to breast cancer) may enable earlier detection and medical treatment.5

Reports of U.S. Pediatric Cancer Clusters:

Reports to the CDC’s National Center for Environmental Health (NCEH) of suspected cancer clusters are investigated if the cluster parameters meet their specific guidelines.6 This investigative data is maintained by the federal Agency for Toxic Substances and Disease Registry (ATSDR).7 According to an article in the American Journal of Epidemiology, CDC investigations between 1961-1977 were conducted in the following eight communities: 1) Niles, Illinois, 2) Kendall Park, New Jersey, 3) Middletown, Connecticut, 4) Niles, Michigan, 5) Milpitas, California, 6) Cranston, Rhode Island, 7) Dubois, Pennsylvania, and 8) Winchester, Virgina.8 In a research article in 2012, the authors found that the greatest number of ATSDR reports since 1990 have been from Illinois and Texas (followed by Massachusetts, Delaware, Missouri, and Ohio).9

Intensive uranium mining in the Southwest between 1948 to the 1980s has left a legacy of adverse health effects,10 including cancer clusters on Native American reservations.11 A study by the Indian Health Service (IHS) over a two year period found that cancer rates were high on the Wind River Reservation in Wyoming (with 40 percent of surveyed residents reporting a blood relative with cancer), and suggested contaminated sites as the causal factor.12

Geographic Information System (GIS) software has made it possible to view epidemiologic reports of outbreaks on a map. While public health agencies are the customary users of this software, the insurance industry is also utilizing it for risk management.

Pharmaceutical Management of Pediatric Leukemias:

The two primary forms of pediatric leukemia are acute lymphoblastic leukemia (ALL) and acute myelogenous leukemia (AML). Chemotherapy is the standard treatment, but radiation, immunotherapy, and transplantation may also be employed. In utilizing chemotherapy, the following are the four typical treatment phases:13

  1. Induction
  2. Consolidation
  3. Intensification
  4. Continuation

Asparaginases are the standard pharmaceutical agents typically utilized for ALL14 (the more common type of pediatric leukemia). Classified as an enzyme, asparaginases are derived from bacteria (and especially E. coli). However, 30 percent of patients are allergic to the E. coli-derived asparaginase.15 As an alternative, the FDA in 2011 approved Asparaginase Erwinia chrysanthemi (Erwinase).16

For AML, etoposide and idarubicin are two chemotherapy drugs utilized. Antibody therapy—a form of immunotherapy—is also utilized (e.g., unconjugated monoclonal antibodies and anti-CD20 antibodies).17  In comparison to ALL, the long-term survival rate remains significantly lower.

Childhood Leukemia Costs and New Concerns Under ACA:

The average cost in 2009 for a pediatric leukemia hospitalization in the U.S. was $55,700.18  Complications due to chemotherapy—as well as infections—can necessitate numerous re-hospitalizations in the first year of treatment. Meanwhile, the mortality rate for childhood leukemia declined 81 percent from 1969-2011 in youth aged 15 and younger, according to a report by the Leukemia and Lymphoma Society).19

In Medicaid, there are no out-of-pocket costs (deductibles, copayments, and coinsurance) for children’s healthcare. In private health insurance coverage, it is a different story, especially under the Affordable Care Act (ACA).  While the ACA bans the use of annual or lifetime caps on coverage, the ACA is also driving a dramatic increase in out-out-pocket spending, with families facing much higher deductibles for physician and hospital care and dramatic increases in coinsurance for the specialty drugs.  It is not uncommon for consumers to now have to pay 50 percent of anti-cancer drug therapy.  This comes at a time where the average annual increase in drug prices, net of rebates and discounts (not the “list” prices too many inappropriately use to track pharma prices) is 5.5 percent, according a new brief from the IMS Institute for Healthcare Informatics.

The threat to access to pediatric cancer treatment and family finances is obvious.

References to Learn More:

  1. Centers for Disease Control. Cancer – Childhood Cancer and the Environment. Webpage: http://ephtracking.cdc.gov/showChildhoodCancer.action
  2. Centers for Disease Control. Cancer Prevention and Control – Cancer Among Children. Webpage: http://www.cdc.gov/cancer/dcpc/data/children.htm
  3. Centers for Disease Control. Cancer – Childhood Cancer and the Environment. Webpage: http://ephtracking.cdc.gov/showChildhoodCancer.action
  4. American Cancer Society. Cancer Facts and Figures 2014 – Special Section: Cancer in Children and Adolescents. Webpage: http:[email protected]/documents/webcontent/acspc-041787.pdf
  5. Schinnerl D, Fortschegger K, Kauer M, et al. (2015). The role of the Janus-faced transcription factor PAX5-JAK2 in acute lymphoblastic leukemia. Blood 125(8): 1282-1291. Webpage: http://www.bloodjournal.org/content/125/8/1282?sso-checked=true
  6. Goodman M, Naiman JS, Goodman D, et al. (2012). Cancer clusters in the USA: What do the last twenty years of state and federal investigations tell us? Critical Reviews in Toxicology 42(6): 474-490. Webpage: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3408895/
  7. Goodman M, Naiman JS, Goodman D, et al. (2012). Cancer clusters in the USA: What do the last twenty years of state and federal investigations tell us? Critical Reviews in Toxicology 42(6): 474-490. Webpage: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3408895/
  8. Health CW Jr. (2005). Community Clusters of Childhood Leukemia and Lymphoma: Evidence of Infection? American Journal of Epidemiology 162(9): 817-822. Webpage: http://aje.oxfordjournals.org/content/162/9/817.long
  9. Goodman M, Naiman JS, Goodman D, et al. (2012). Cancer clusters in the USA: What do the last twenty years of state and federal investigations tell us? Critical Reviews in Toxicology 42(6): 474-490. Webpage: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3408895/
  10. Moore-Nall A. (2015). The Legacy of Uranium Development on or Near Indian Reservations and Health Implications Rekindling Public Awareness. Geosciences 5(1): 15-29. Webpage: http://www.mdpi.com/2076-3263/5/1/15/htm
  11. Ahtone, Tristan. (January 19, 2012). Cancer-Riddled Wind River Reservation Fights EPA Over Uranium Contamination. Indian Country Today Media Network.com Webpage: http://indiancountrytodaymedianetwork.com/2012/01/19/cancer-riddled-wind-river-reservation-fights-epa-over-uranium-contamination-73103
  12. Wyofile.com. (2013). Study ties cancer on the Wind River Indian Reservation to uranium tailings site. Webpage: http://www.wyofile.com/blog/study-relates-cancer-on-the-wind-river-indian-reservation-to-uranium-tailings-site/
  13. Tong WH, van der Sluis IM, Alleman CJM, et al. (2013). Cost-analysis of treatment of childhood acute lymphoblastic leukemia with asparaginase preparations: the impact of expensive chemotherapy. Haematologica 98: 753-759. Webpage: http://www.haematologica.org/content/98/5/753
  14. Pieters R, Hunger SP, Boos J, et al. (2011). L-asparaginase treatment in acute lymphoblastic leukemia: a focus on Erwinia asparaginase. Cancer 117(2): 238-249. Webpage: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3000881/
  15. Vrooman LM, Kirov II, Dreyer ZE, et al. (2013). Preliminary Results Of a Pharmacokinetic Study Of Intravenous Asparaginase Erwinia Chrysanthemi Following Allergy To E Coli-Derived Asparaginase In Children, Adolescents, and Young Adults With Acute Lymphoblastic Leukemia Or Lymphoblastic Lymphoma. Blood 122(21): 3904-3904. Webpage: http://www.bloodjournal.org/content/122/21/3904?sso-checked=true
  16. Leukemia and Lymphoma Society. Facts 2014-2015. [Pub. No. PS80 5M 1/15]. Webpage: https://www.lls.org/sites/default/files/file_assets/facts.pdf
  17. Vedi A, and Ziegler DS. (2014). Antibody Therapy for Pediatric Leukemia. Frontiers in Oncology 4(82). Webpage: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4000992/
  18. Warner EL, Kirchoff AC, Nam GE, et al. (2015). Financial Burden of Pediatric Cancer for Patients and Their Families. Journal of Oncology Practice 11(6). Webpage: http://jop.ascopubs.org/content/11/1/12.full
  19. Leukemia and Lymphoma Society. Facts 2014-2015. [Pub. No. PS80 5M 1/15]. Webpage: https://www.lls.org/sites/default/files/file_assets/facts.pdf
  20. Lin Y-F, Lairson DR, Chan W, et al. (2010). The Costs and Cost-Effectiveness of Allogeneic Peripheral Blood Stem Cell Transplantation versus Bone Marrow Transplantation in Pediatric Patients with Acute Leukemia. Biol Blood Marrow Transplant 16(9): 1272-1281. Webpage: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2919628/