Childhood Cancer -- The Forgotten Ones

Many readers may have seen A Lion in the House, which ran on PBS stations the past few days. It's a poignant portrayal of how families deal with childhood cancer, the subject of my post on June 11. As reader Joana Ramos of Cancer Resources and Advocacy, a Seattle, WA-based group, notes, my column left out some very important realities about childhood cancer around the world. Here's what she had to say:

Adequate and appropriate R&D for new drugs to treat childhood cancer, accompanied by rational use of drugs, are only part of what needs to be done to combat this disease. Unfortunately, health and healthcare inequities in outcomes from childhood cancer continue to confound the perception that curing children with cancer is a success story. In low- and middle-income countries of the world, the survival and cure rates are almost the exact opposite as they are in the USA and other wealthy countries: about 80% of children diagnosed with cancer die, and in many countries, only some 10-20% receive any treatment at all, many times not even pain relief in their final days. (sources: International Confederation of Childhood Cancer Parent Organizations (ICCCPO) and International Society of Pediatric Oncology (SIOP).

Here in the USA, the same type of cancer outcome health disparities that exist among adults are reflected in the pediatric population also. Various studies have shown that survival and cure rates are significantly lower among children who are members of racial/ethnic minority and low-income groups, but that outcomes can be equalized when all have access to timely and appropriate care. With the ever rising numbers of uninsured and under insured children and families, and the bar on access to public benefits programs for immigrant children, appropriate access is still beyond the reach of many. From my colleagues in both ICCPO and SIOP, as well as the Association of Pediatric Oncology Social Workers, I am aware that it is not just in developing countries or the USA that all children do not have access to existing medicines needed for cancer treatment, but this is presently true also in Canada where access to prescription medicines is handled separately from coverage of care by HealthCanada, and each province sets it own formulary of covered drugs.

Combatting childhood cancer needs to be based not on just what is good for the pharmaceutical and medical supply companies, but on the needs of all affected children and adolescents. I agree that the whole area of medicines R&D, and the patent system -- which also grants Orphan Disease extensions for purported pediatric uses -- need to be urgently revised. Cancer advocacy organizations need to get on board too, as presently, besides very vital psychosocial supports and services to survivors, most of them focus primarily on raising awareness and funds for cancer research, not on improving access for all children. And even the most well-insured families whose children are diagnosed with cancer in the USA incur often tremendous uncovered expenses in the form of months or years of lost wages, costs of transportation, meals, and
double housing expenses, child care fees, follow-up care and myriads of prescription drugs, as well as the cost of many nonmedical supportive care needs of the patient, and much more. Those American children who do survive cancer often also find themselves among the ever-growing group of 18-35 year olds who are uninsured, and may end up never able to get insurance both despite and because of their lifelong need for specialty follow-up care.

Joana also corrects my statement that the Children’s Oncology Group (COG) is the only group conducting childhood cancer clinical trials and is run by the National Cancer Institute. In fact, COG is an independent entity, the research arm of the National Childhood Cancer Foundation. For more information about COG, see their CureSearch website. NCI has its own pediatric cancer research program, the Ped-Onc Branch, whose website is here.