Dear Editor:

September is National Childhood Cancer Awareness Month. You've seen the chemo-kids in fundraising brochures, the baldheaded ones with the IV's in their arms, innocent and helpless unless YOU help, contribute. These kids didn't smoke, disregard a cancer warning, or tempt fate. They were truly innocent and more helpless than you may think. Beyond using them for sympathetic, fundraising tools, what do we adults and the medical profession really offer these kids in return for their innocent images? It's time to become aware.

While it is a fact that childhood cancer is rare, it is also true that cancer is the number one killer of children over the age of one. According to the National Childhood Cancer Foundation (www.nccf.org) estimates, there will be 12,500 new cases of childhood cancer in the US this year with almost 2,000 deaths. Compared to American Cancer Society figures for new cases of the "Big Four" adult cancers, breast-212,600, lung-171,900, colon-105,500, and prostate-220,900, childhood cancer is hardly noticeable. Unfortunately, it is the relative rarity of childhood cancer that is often used as the explanation why it is poorly diagnosed, treated with "hand-me-down" drugs, and neglected when it comes to research funding earning the sardonic nickname "Orphaned cancers."

Some childhood cancers are not easy to diagnose. Most pediatricians may see only a handful of rare cancer cases during their entire career. Since many of the symptoms mimic other more common childhood diseases, cancer is usually suspected only after other possibilities have been investigated and ruled out. Subtle sarcomas often have nagging pain as the only noticeable symptom and with any active child, bumps and scrapes are part of being a kid. It is common that after as long as a year or more of pain complaints from a child, scans that can detect tumor cells, X-Rays and MRIs that show irregular bone and tissue formations are finally brought into the picture and a biopsy and chromosome study are done to make a proper diagnosis. But, the critical time advantage for early diagnosis is gone.

Most drugs that are used to treat pediatric cancer were originally developed for adult cancers; breast, lung, colon, and prostate, diseases children are unlikely to get. These "hand-me-down" drugs started with years of clinical trials before they became widely available to adults. If they showed effective results in adult treatment, often more years of clinical trials had to be repeated for pediatric use in order to, for example, test whether a drug developed for lung cancer could have a positive effect on an 8 year old with bone cancer.

The simple truth is that there are differences between pediatric and adult cancers, and yet a staggering amount of research for adult cancers and patients continues while pitifully little is being done for cancers that target kids exclusively. Large drug companies, who often pay to have their products used on patients for clinicalstudies, charge huge fees for the use of their drugs to recover research and development costs once the FDA has approved them. Therefore, it's good business to research the diseases that provide the most customers and to promote the notion that chemotherapy is the best treatment available. Once again, the rarity of childhood cancer works against the health of children.

If basic research and innovative new therapies are to be undertaken, funds from the public sector must provide most of this support. The National Cancer Institute, a branch of the National Institutes of Heath, awards grants for basic research and clinical trials for innovative new treatment ideas. One of the problems for some non-profit groups like the American Cancer Society and even the Sarcoma Foundation, is that they fund research for more common adult cancers because, in part, that's where their own dollars come from, not kids. In a sense, they compete with drug companies for the funds from the same adult group, one for profit in the use of their products and the other through soliciting donations, reasoning that to do so is in their own best interest.

Without economic resources, political clout, education, even the right to vote, kids are helpless to influence the direction of research for their own best interests. The weapons they are left with to fight a life threatening disease are the drugs available from adult cancers and adult research. Kids who are unlucky enough to be stricken with a cancer that focuses almost exclusively on adolescents, like Ewing's and Osteosarcoma, are truly the orphans among orphans.

Nearly all of the research and clinical trials being done in the US make an assumption that is very profitable for drug companies; the best treatment for cancer is chemotherapy. But what if the cancer is chemo resistant? For some unlucky patients, a return of one's cancer can reduce the chance for survival to single digits. This horror is unfortunately true for adults and children alike. For example, if the cancer returns to a pediatric Ewing's sarcoma patient, which happens in about 50% of cases, the survival chances drops to 15%. There is a limit to the effectiveness of chemotherapy. It is in the best interests of both adults and children to quickly find non-chemo/non-toxic treatments, because sadly every day patients are running out of ammunition against cancer.

Dr. James Geiger, tumor immunologist from the University of Michigan's Mott Children's Hospital, is hot on the trail of a cancer vaccine. His non-toxic approach "teaches" the patient's immune system to recognize resistant tumor cells and kill them. With public funds from the NCI and grants from the University of Michigan, the results of his Phase I Clinical Trial using this approach were very positive, showing the stabilization or regression of cancer in pediatric volunteers with significant bulk disease (dying kids). The implications of these results for all cancers are thrilling. The biggest side effect from the treatment was fatigue.

The expanded Phase II Clinical Trial proposal that would utilize the vaccine on adolescent specific Ewing's Sarcoma patients, was not approved. Why? It didn't include adults. So, what chance does a Ewing's kid (survival rate of 50%) have if the cancer comes back (survival rate now at 15%) and one of the most promising treatments left was not approved because adults were not included in the clinical trial for a disease that targets adolescents. In my opinion, this is not only logically mindboggling but shows bureaucratic indifference to kids who are actually dying every day waiting to receive this treatment, not to mention the adults who could receive it "off-study" (not part of the trial) anyway.

If this month of Childhood Cancer Awareness is to be truly meaningful to our children and ultimately ourselves, we must respond by giving to cancer research on the condition that our funds go specifically to pediatric research. That way, we give kids a fighting chance to enjoy the same specialized treatment we adults demand for ourselves. We can show these vulnerable youngsters that they are a valued part of our society and not just important for sympathetic promotional pictures soliciting donations for organizations that will ignore them when it comes to research allocations.

Fred Morden
The Brian Morden Foundation
2809 Columbia Dr.
Altoona, 16602
946-9369
www.brianmordenfoundation.org

 

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Contact The Brian Morden Foundation at fdj@brianmordenfoundation.org